Defeat ALS

Hospital Gown + Confidence = Oxymoron

2010-08-05T03:00:00.000-07:00

Fifteen years in retail fashion taught me many things. But the most important thing I learned is that when I feel like I look good, I honestly feel and "do" better. To this day, if there is an important event - interview, meeting, presentation, date, etc., I will take the time to make sure I have the perfect outfit and all the correct accessories. Then I only have to worry about what I'm going to say....not about how I look. Why, you might ask, is this important to share with you???

In my opinion, going into the hospital, for any reason, is a time for making sure all of the confidence chips are stacked in your favor. The night before my mastectomy, I laid out a cute, but comfortable outfit. On surgery morning, I showered and got dressed. Took time to do my hair. No make-up, but made sure my face was clean and moisturized. My friend picked me up promptly at 5:00AM with "wow, you look adorable!" With my confidence boosted, I was ready for surgery!

At 5:30AM, the pre-op nurses, put a quick and decisive end to my adorable-ness when they handed me a bluish-gray, standard-issue, one-size-fits-none, hospital gown w/unmatched robe, white compression stockings, gray slipper socks with white grippey stuff on the top AND the bottom and an over sized "hat" that most self respecting cafeteria workers would not be caught dead in! In the span of 30 minutes, I went from confident patient, to just another patient to be operated on, and I was less than thrilled. Now, before you start in, I can practically recite all the reasons for this change of garments, but does it really have to be that way?????

According to Rachel Zinney, the founder of Dear Johnnies, the answer is a resounding NO! The tagline "the get better hospital gown", is true! With a little pre-planning and some cash, I gave myself the gift of dignity and style, in a place where there is precious little of either!! You can give yourself or someone you love, the gift of a hospital gown that is bright, stylish, improves the color in your cheeks, covers your assets AND meets the needs of your medical caregivers. A win-win all around!

It will probably take a little work to convince the nurses, that your hospital gown is not just any gown you brought from home to wear in the hospital - but I promise you, it is absolutely worth the effort!! The minute I changed into my own gown, I started to feel more like Kathie and not "the patient in room 95W". These gowns are the genuine article - open in the back as needed, but snap closed and tie in the back to protect your dignity as you walk around the floor, and have shoulder snaps to accommodate IV equipment or nursing. Size matters....so these gowns come in a couple of sizes, including Plus for several styles. Once my nurses were satisfied that they would not be inconvenienced, they were quick with the "oooohhhs" and "aaahhhhhs". Sprung from the hospital, I re-gifted my COCO gown to my friend Megan, an ALS patient who is in and out of the hospital....hopefully she will feel just as stylish!

Thank you Rachel for giving us confidence and dignity at a time when we feel especially vulnerable!

Props to Peter Shankman and HARO for sharing the Dear Johnnies link earlier this year!

Bringing Sanity to Mass Communication

2010-07-30T03:00:00.000-07:00

Back in January, as I was beginning my journey with breast cancer, I quickly discovered that, one of the biggest challenges of getting sick, is that
my friends all wanted to know how I was doing, and more importantly....how they could help me. I found myself fielding lots phone calls at all times of the day and night, and I felt like I was always repeating myself...."haven't we already talked about this?" I didn't know who I'd spoken to, couldn't remember what I'd said or who I'd spoken to, and frankly, it was tiring for me. But I clearly understood the love and concern of my friends, and their need to know what was going on, so that I didn't feel alone.

In frustration one day, as I chatted with my friend Patti, I remember saying that "I just needed an easy way to communicate with my friends and family, you know, post it once and let them log in to see what was going on." I've been around technology long enough that I was sure there was a solution, I just didn't know about it. Her answer,"why don't you just set up a CaringBridge site?" My startled response, "I've never heard of CaringBridge." Turns out this is the best kept secret on the internet!!

It was easy to get started. You can do this as a patient, or someone on your caregiving team can work the magic! Once the basics were in place I could start typing my thoughts into the journal section. I can share thoughts, test results, updates and more, once. Then friends and family can log into the site with a web browser and get the exact same information, when it's convenient for them. Did I mention that the best part is I only have to post it once!? My CaringBridge journal has significantly cut down on the number of phone calls, which allowed me to get the rest I needed and heal.

I still get lots of calls, but now it's to offer good wishes, fill in some of the details on what I posted and catch up on their lives...it's the best! Since I started using Dragon Naturally Speaking, I just speak my thoughts into their journal site and it's even quicker! The guestbook section allows anyone to leave encouraging messages, which has proved invaluable over the past few months, helping to keep my attitude positive and strong.

CaringBridge is easy to setup, easy to maintain and more importantly it easy to share the login credentials. This was a huge help when I was in the hospital, when everyone was the most worried! No one had the burden of answering a million phone calls to find out how I was doing!

The most time consuming part of getting started was collecting all of the e-mail addresses of friends and family and sending the URL once I had the site set up. This part requires a bit of advance work, but it's worth the extra effort. To the Dev team at CaringBridge, if you're listening...it would be awesome if there was a built-in tool to import an address book!!

I use Outlook. I used the export feature and created a master list of friends and their phone #/e-mail addresses. From there, I created about 10 logical categories, based on a common thread (e.g. church, relatives, colleagues, belly dance, etc) and asked one friend in each group to be the point person. I gave each point person a list of close friends associated to that group and then gave the master list to my friend Cindy. Several friends sent out an advance notice, pointing their list members to the site early!

The best part of all this, in my opinion, happened on surgery day. Cindy made about 15 calls and one posting to the site to start the communication tree; notifying about 450 of my friends and family members, scattered across the world, that I had made it through surgery with flying colors. It was awesome!

To get started, go to www.caringbridge.org. Have fun, pass the word about this cool resource, and let me know how it's going!

School was NEVER this much fun!

2010-07-25T03:00:00.000-07:00

I'm a student again!!! I've returned to a learning mode, working to learn the craft of blogging. In the past few weeks, I've read a number of blogs and have stumbled onto some great practical resources. One of them is pro-blogger.net. On July 15th, Darren Rouse, the author of pro-blogger.net posted a challenge to his readers to take part in the 7 Link challenge. The idea is to publish a post a list of seven links to posts that you and others have written that respond to the seven questions listed below. This sounded like a lot of fun.

So, while it's a little after the fact, here is my entry for Darren's challenge:

Your first post: Shift F10
A post you enjoyed writing the most: Aftermarket add-ons for your wheelchair
A post which had a great discussion: 100 things...leading to a single choice
A post on someone else's blog that you wish you'd written: How to pissed off the fatally ill written by the fabulous Carla Zilbersmith, who lost her battle with ALS earlier this year.
Your most helpful post: Project Gift Box - Organizing Yourself
A post with the title that you are especially proud of: Hey Papa....I'm doin' OK!
A post that you wish more people had read: I had a tie here! Kids and ALS and Why Does Fundraising for ALS Matter...Really?

This was a fun challenge to complete! I urge you to check out some of the posts, then head over to Darren's site to check out other entries. If you are a fellow blogger, consider sharing your entry with me and I'll check out as many as I can. If you enjoyed this post, please leave a comment or become a subscriber.

Thanks for reading!

Off the Bench…Back in the Lineup Again!

2010-07-21T03:00:00.000-07:00

I am a huge baseball fan! And…even though they regularly break my heart, I remain true (29 years and counting) to the orange and black jerseys worn by the San Francisco Giants. My brother, an equally devoted Oakland A’s fan, and a few other friends have offered to pay for therapy! Hopefully, this bit of insight into my psyche sets a context for this post.

I’ve missed writing. I’ve been on the bench for 6 months after taking an “I found a lump” curve ball to my left breast on January 21st. Four little words that have significantly changed my strategy to playing this game called life. Turns out, I was lucky to get a “brush back” which allowed me to assess my life and make some changes, so that I have the stamina to stay in the game. Here are just a few of the life lessons I’ve learned from baseball and my time on the bench:

In January, when it’s still gray and icky, my heart leaps hopefully when I can start counting the days to spring training, along with all of the sports pundits. Hope springs eternal in January – it’s a new season and this could be the year we go all the way! Every 365 days, I get to be hopeful - to start over to reach my personal dreams.
There’s a lot of strategy to baseball. Pitching rotations and match-ups; hitting lineups; officiating; home or away; number of days on the road, and so much more. Same as life. Lots of things to consider when making changes, but it helps to know my team, how rested I am, am I on my home turf or on the road, what/who can I always count on?
It’s a team game that takes 9 players, plus a cast of back-ups. And…any one player can be the hero or the (scape)goat for any given game. I’m only as good as the people I surround myself with.
One game does not a season make. One has to shrug off a bad break or performance and mentally get into the next game fast. There’s never a lot of time for boo hoo-ing or second guesses. Equally important, a good performance today, does not guarantee a good performance tomorrow!
Each player is a specialist, but there are times when opportunity knocks and one needs to abandon specialty to get the job done.
168 games makes for a long season, so players must have endurance and be resilient to make it through a full season. Health, training/preparation, attitude, support and flexibility, all play into one’s ability to make it through a long season.
The game is on the field! Fans and coaching makes a difference, but in the end, the coach and fans are not on the field, the players are. If it is to be….it’s up to me!
For a variety of reasons, players can spend a lot of time on the bench and not on the field. No one wants to be on the bench any longer than they have to! Time off is good. Too much time off is not good – at least for me!
From a purely biased perspective, San Francisco has the cutest little ballpark in the league, and where else but a ballpark, can you enjoy beer, friends, and the smart crack of a line drive? It’s good to remember to stop and smell the roasted peanuts!

Six months has brought many changes and insights which are great topics for a blog about meaningful giving. For now, I am ready to play ball, so I’ll see you on the field - or in this case - on this blog!!! For all the baseball fans, what are your favorite ballpark memories? What life lessons has baseball taught you? Please comment and share your stories!!

If you are interested, my CaringBridge online journal chronicles much of my personal journey with my breast cancer diagnosis.

Photo by Backpacker.

Rock on Carla Z!

2010-02-19T07:45:00.000-08:00

If you've not discovered and/or taken the time to read the blog Carla Muses, you are seriously missing out. Just my opinion. Carla Zilbersmith is sassy, smart, and wicked funny. Oh...and she just happens to have ALS. I didn't know her bALS (before ALS) - my loss I assure you - but I suspect the disease has only served to sharpen an already razor-sharp perspective on everything...from the world, politics, dating, self care and quite literally, EVERYTHING in between. She is a gifted writer, gamely sharing her ALS journey in full, out loud, living & breathing, color. Late to the game, but yes....I am a fan!!

With that in mind, you should not be surprised to hear that she's written an informative and (it wouldn't be Carla's if it wasn't!) irreverant guide to living (with a capital "L") with ALS instead of waiting around to die from it. While the Vain Girl's Guide to Living with ALS is clearly targeted to women living with the disease, never fear. With and open heart and an open mind, there is something for everyone. There are quite a few take-aways for me!!!

Once your laugh muscles are warmed up, the next step is to check out the film "Leave Them Laughing - a Musical Comedy about Dying". Treat yourself to a full, "Carlaful" experience.

Enjoy!!

ALS claims tireless California ALS Advocate Steve Hall

2010-01-20T21:04:00.000-08:00

I met Steve Hall twice during my tenure as the Advocacy and Public Policy Chair for the ALS Association - Greater Bay Area Chapter. After his retirement from the ACWA in 2007, as the effects of ALS made it difficult to work, Steve became an advocate for legislation on ALS at the state Capitol. His motto became, "As much as I can for as long as I can." Steve held the ear of many influential legislators in Sacramento, testified on behalf of ALS Patients for legislation carried to the State Senate and Assembly, and helped to open important doors for the CA ALS Advocacy team. He was every bit as gracious and courageous as Bob describes.

On Thursday, January 28th, a floor session is scheduled in the California Senate. Senate President pro Tem Darrell Steinberg will speak about Steve’s life, his battle with ALS, and adjourn the California Senate in his memory.

I too, am saddened that another champion has been lost to ALS and send his family my fondest prayers and wishes as they grieve Steve's passing. Each of us can hope that our lives are remembered in such a warm and clearly enthusiastic manner!

Greetings:

It is with a heavy heart, that I share with you news I received this evening that Steve Hall passed away this afternoon due to the ravages of ALS (Lou Gehrig's Disease).

Steve was a blessing to me far more than anyone can ever know. He was a competent, loyal and caring boss for nearly 10 years during my tenure at ACWA. He was a wonderful mentor. He was a great friend. He was a brother in Christ. It is the faith I share with Steve upon which I rely upon tonight, comforted in the knowledge that Steve has escaped from his broken earthly body and entered into glory to experience joy and peace eternally with our Lord and Savior, Jesus Christ. I know that Steve's faith carried him through the suffering he knew that lay ahead of him when he was diagnosed with ALS. His spirit was strong; his smile and sense of humor still evident long after he lost the ability to speak. What bravery and courage he displayed for all of those who knew him. I shared my e-mail updates with him during the water conference committee hearings this past fall. He replied one day, taking great glee that nothing much had changed in his absence and admonishing me to keep up the fight.

Steve and I first met when I worked as the senior consultant to the Assembly Water, Parks & Wildlife Committee in the mid-1980s and Steve was head of a San Joaquin Valley farm water coalition forged during the Kesterson Reservoir agricultural drainage (selenium) upheaval in the San Joaquin Valley. Water deliveries were threatened; farming was threatened and entire communities held their collective breath. Steve swung into action in the State Capitol, admitting to being out of his element, but one would never know it. He accompanied then Assembly Member Jim Costa and me to meeting after meeting, hearing after hearing. We took on those interests and powerful legislators who would rather see farming in the west side of the San Joaquin Valley abandoned and won a 3-year reprieve for farm drainage ponds from the Toxic Pits Cleanup Act.

Our paths did not cross again until Steve was named Executive Director at ACWA. I was General Manager of the El Dorado County Water Agency at the time and I was asked to take part in the effort to rejuvenate and reorganize ACWA. The personal characteristics that Steve demonstrated in our earlier work together remained when I worked with him again in our respective new roles. His leadership qualities, his ability to listen, his steadiness, his ability to slow down for his members when necessary were becoming more evident to those who did not know him before he took over the leadership of ACWA. He wasn't perfect mind you and I do not intend for you to reach such a conclusion. Steve would be the first to counter any such contention.

I left the El Dorado County Water Agency in the summer of 1993 and embarked on a 2-year adventure in public finance investment banking. My timing was poor as the bottom of the municipal finance market fell out after a historic run of refinancings made men and women in the industry wealthy. I suffered two layoffs within 13 months of each other. In May 1995, I came up to Steve at the ACWA Spring Conference at Lake Tahoe following a luncheon event. I just wanted to say 'hello' and renew our acquaintance. He greeted me warmly and spent a few minutes getting caught up as staff and members swirled around him beside the head table. He asked me if I ever came through Sacramento and if so, could I stop by to visit. Something told me this was more than Steve being gracious, so I called his assistant Audrey Ryder the following week. He and I met about two weeks later and he shared with me that he was thinking about reorganizing ACWA staff--would I be interested in coming to work at ACWA to lobby for the Association? I told him that I would be interested. He said he had a long way to go in the process, a lot of people to talk to, other candidates to think about, an executive committee and a board of directors to convince--if the reorganization occurred, it could be 6 to 12 months away from happening. Four weeks later, while I was assured by the partners of the regional investment banking firm where I worked that they thought I had a future in public finance, they asked me to stay on without pay--relying solely on commissions for the immediate future. Since I hadn't earned a commission in two years while at two firms, and I had a family and mortgage to take care of, I asked to be laid off. I called Steve from a pay phone in Walnut Creek about an hour later. I asked him if he had thought any more about our conversation. He said that he had and asked why I was calling. I told him about getting laid off. He said he would get to work on bringing me to ACWA. I started working at ACWA in the new position of State Legislative Director on August 1, 1995--six weeks after that telephone call!

There are too many funny, too many interesting political and workplace stories to share here--many intensely personal and private experiences that will remain between Steve and me.

Steve was always very health conscious and very athletic--playing tennis with Jim Costa and others; golfing with Mike Dillon and others; playing basketball (and blowing out an Achilles tendon). Well, even with all of that physical activity, he returned from an annual check-up to share that he had high cholesterol and needed to take better care of himself. He tried mightily to stick to a healthy diet. I can't tell you how many times at ACWA department manager meetings during that time that the managers laughed amongst ourselves as Steve--over the course of an hour or two hour meeting, started out eating just one quarter of a muffin or doughnut, only to go back three times to end up eating the remainder of the muffin or doughnut--I guess it had fewer bad calories that way! Well, this lead to one of the few lighthearted moments that came after Steve was diagnosed with ALS. He was still working at ACWA, but at that time confined largely to the JoyRider to move about. I happened to be visiting on the second floor of ACWA HQ one day when Steve came around the corner toward his office with the largest chocolate-covered raised doughnut on a plate in his lap that I think I have ever seen . I said: "Well, I can see you're not worried about your cholesterol buddy!" We both shared a laugh.

I am blessed to have known Steve Hall; I am a better man for sharing a part of my life with him. Words are wholly inadequate to describe the loss I feel tonight. He deserved much better from life, but had no complaints.

Some of you knew Steve well, some of you were acquaintances and some just knew him by observing his work at ACWA. Please feel free to share this small remembrance with others as I do not have all the e-mail addresses of friends and colleagues here at home. Please keep Steve's family in your thoughts and prayers.

Bob
Reeb Government Relations, LLC
1107 9th Street, Suite 510
Sacramento, California 95814
PH: 916-558-1926
E-mail: robertreeb@comcast.net

Angels Among Us...continued

2009-11-18T01:00:00.000-08:00

So…hospice is a little tricky, psychologically. Timing is everything! When you turn to hospice, you are admitting that the end of your physical life is somewhat imminent and that you do not want to take any extraordinary measures to extend it. You are going to die. Soon. And you are ok (more or less) with the next steps. Not a decision to be considered lightly!

Bill and I were clear with each other that we weren’t ready to give up hope. But, to “understand our options”, we filled our hospice prescription about a month later. As we suspected, we were a bit premature. But, it turns out, there is a step you can take that extends some, but not all of the benefits of hospice. It’s called Palliative Care – think hospice lite. Our experience was brief but positive. I would highly recommend that anyone facing a potentially life threatening illness investigate the services offered by palliative care practitioners in your community.

Our stay in palliative care lasted about a month…until our next clinic visit. By then it was clear that Bill’s ALS had a plan of its own and didn’t really care about our need to get comfortable with the stages of the disease. The palliative care nurse recommended that we contact hospice. It turned out to be the best decision of our lives.

Because it’s scary to admit that death is inevitable, and potentially close at hand, it’s hard to bring hospice into the picture. Typically, the hospice team is brought in during the last stages of the patient’s life, allowing them to die outside of the clinical environment of a hospital, affording comfort and dignity. We filled our prescription and received a perspective on what hospice COULD be.

If the hospice caregivers are brought into the family early on, they have a chance to get to know the patient, the family and gently walk everyone through the process. Not that their job is especially fun, but it isn’t meaningful for them if they are just around to help medicate a patient. They will do it, but optimally, there are lots of resources available which can make the journey much easier for the patient and for the primary caregivers. For example,

Chaplains can address spiritual needs.
Social workers can bring in community resources.
Nurses and medical professionals can baseline vitals and have the difficult end of life discussions at a pace that seems comfortable and respectful.

And so it was with us. A care team was assigned to us. Jolene was the case nurse and a perfect fit for Bill. She respected him, listened to his wishes, was his advocate when I disagreed with a particular course of action and in general got to know him as a whole person. Not just a patient with symptoms to be managed. I loved her, because I could use her as an ally as needed! Jolene handled any major medical issues and made sure I was trained to handle the day to day issues. In the early days, a team of aides came twice a week to help with bathing and personal care. As we progressed, they came more often, giving me an hour of respite and Bill a clean shave and a smiling disposition. Showers will do that! Emmy was always his favorite. Hospice programs vary, so do your homework to find a good fit. I know of an ALS patient and his wife who received regular massages in their home as part of their hospice services!

I’m not certain why someone chooses to pursue a career in hospice. It may be that hospice chooses them. No matter! I am eternally grateful for these special angels among us. Thanks to them, the passage from this life is easier, and the resulting “good death” can indeed be celebrated.

Also posted to Fashionable Giving

Angels Among Us

2009-11-17T08:15:00.000-08:00

When we are born, we come into the world amid much celebration and joy. When we die, why isn’t it the same?

Full disclosure at the beginning. Some may find the next few posts uncomfortable to read, because we don’t generally discuss death and dying in this culture. I hope you will stay with me as I share part of my personal story and thoughts on a model for a good death as I recognize the many angels who have chosen a career in hospice, during National Hospice month.

In my lifetime, pets, grandparents, friends, in-laws, my dad and my husband have died. For my dad and my brother in law, a gunshot wound and a motorcycle accident ended their lives almost instantly, mercifully. For those of us left behind, the process of processing their death was painful. We have all been very philosophical, saying “at least he didn’t suffer”. But it still hurts some 20+ years later when I want to run something by my dad and have to grapple with the quantum physics/time-space continuum involved in that conversation. Needless to say, I’m snapped quickly back to the present moment! We have the conversation; I just have to listen a little more closely for the answer!

Since pets have chronologically shorter lifespan, we are generally prepared for them to die in our lifetime. I completely agree that the grieving process is intense, but philosophically, humans tend to be more prepared for a pet death. For my pets, I have been grateful for the caring counsel of a marvelous team of veterinarians!

For everyone else I’ve lost, hospice staff and volunteers have often been involved, at least to some degree. In the cases where hospice was involved, they were generally brought in at the last few days/weeks of life, primarily to help manage pain and offer some comfort to the survivors. And I will never be able to sufficiently express my gratitude for their marvelous work!

When we received Bill’s ALS diagnosis, we did a lot of soul searching. We suddenly found ourselves facing a lot of questions about death and dying. And….facing a question neither of us planned to discuss at only 23 years into our relationship. I’m not sure when we planned to have the conversation exactly, but I promise you, it wasn’t then! And from a now experienced vantage point, questions like “How do you feel about death?”, “What is quality of life for you?”, “Do you want to be buried or cremated or something else?”, “ What kind of funeral would you like to have?” need to be brought up sooner than later. Yikes!

As I write, I am so grateful for the counsel of Dr. Will North, one of the finest human beings I have ever met, and a darned good neurologist! During one of our early visits, with Will, Bill needed to know the particulars of what the last few hours and minutes of his life might be like. Not an especially surprising curiosity from a guy who had spent a most of his career in rescue situations and had seen his share of death. Me….I started to squirm and look for the exit route, knowing full well there is no escape, either from ALS or this particular conversation. Damn!

With his characteristic candor and amazing bedside manner, Dr. North walked us through what the final days and hours would likely bring for Bill. Turns out that the ONLY kind thing about ALS is that in most cases, it allows the patient a very peaceful passing and I can report that is what happened for us. Once Dr. North had satisfied all of Bill’s technical questions, he broached the subject of hospice and wrote out a prescription, with the understanding that we could “fill” it whenever we were ready. I remember our walk back to the car and ride home as exceptionally quiet as we each processed this new information.

I don’t remember who finally broke the silence but it was as if each of us was waiting for the other and finally couldn’t stand it anymore! We agreed that we were too early for hospice – Bill was still walking at this point – but we agreed that when the time came, we wanted hospice involved.

To be continued….

Also posted to Fashionable Giving

Bill turns 49 1/2

2009-10-28T01:00:00.001-07:00

In January 2005, in the midst of building a ramp for the house, getting Bill ready for his wheelchair and who even remembers what else, our friend Connie asked, "Bill will be 50 this year, right?" Indeed, his odometer would turn to 50 in October. Always up for a party, Connie suggested we start planning!

A couple of weeks passed and it became pretty clear that Bill's ALS was progressing much faster than any of us were prepared for. I called Connie and suggested that we hold off on the planning. Based on his progression...it didn't look like we'd have a guest of honor for this bash and I didn't want to put anyone through a lot of trouble or heartache. She said she'd get back to me!

Within a matter of days Connie had decided that waiting was not an option. She delivered the new plan. We would we quickly organize and still throw the party to celebrate Bill's 49 1/2 birthday! I told you....she's a party girl!! She and her husband Eric organized all of the details. Bill and I had just 2 assignments. Put together the favors and show up to enjoy some snacks, cake and the good wishes of friends and family.

Every picture tells a story! This one tells of an amazing group of friends, who quickly organized before ALS could snatch their friend, to celebrate a milestone birthday - 6 months early! Bill is smack in the center grinning, and Connie is in the lower right corner, with the bright, beautiful smile in the black, floral dress. I've told them personally, but this tells the world how grateful I am for the friendship I enjoy with Connie and Eric. I will ALWAYS appreciate their thoughtful, unselfish gesture.

Oh...and the party favors? A CD of Bill's favorite songs. No small task for a 15 year DJ'ing veteran! Volume I was such a hit, he immediately received requests for Volume II. But that...is another story!

Here's the playlist...You'll probably scratch your head and determine that my husband's taste in music ran to the extremely eclectic. And you would be so right!! Enjoy...and let me know what's playing on your iPod!

Fox Fanfare
Beach Boys - 409
Disney - A Pirates Life
Eagles - Hotel California (w/acoustic intro)
Free - It's All Right
3 Stooges - Hello (sound clip)
Jump in the Saddle - Curly Shuffle
Los Lobos - Mustang Sally, Slow Your Mustang Down
Michael Franks - Inside You
Star Wars Quote - "I find your lack of faith disturbing" (sound clip)
Ray Charles - America the Beautiful
Santana - Samba Para Ti
Sara Evans - Suds in the Bucket
Animal House Quote - "Fat, Drunk and Stupid is no way to go through life son" (sound clip)
Shelly West - Jose Cuervo
Southern Comfort - Liquored Up, Lacquered Down
Steppenwolf - Born to be Wild
THX Movie Opening Theme
Vivaldi - Concerto in D Minor, Allegro
Toby Keith - Courtesy of the Red, White, and Blue
War - Low Rider (remix)
Tracy Byrd - The Truth About Men
AD/DC - Back in Black
Backdraft Sound Track - Fahrenheit 451
Braveheart Sound Track - Amazing Grace

Patients with Pluck!

2009-10-24T01:00:00.000-07:00

From the Yahoo Education dictionary, I found the following definition for the word "pluck"

"Resourceful courage and daring in the face of difficulties; spirit."

And PLUCKY would be the best one-word description for 3 ALS patients, each far too young to have this shitty disease, whom I have come to admire and consider as personal heros. They have truly taken the lemons life has handed them, added some salt and tequila (the 100% Agave GOOD stuff!) and done shots! While they are still around to read these words, I offer the following tributes.

Carla Zilbersmith is a singer, actress, mom and a hell of a funny woman! She lives her life out loud and ALS is just one of the many facets of this extraordinary woman. Read Carla Muses regularly for a funny, irreverant and emotionally engaging look at her life, which just happens to include ALS. I often wish that our paths had crossed when Bill was still alive. I can only imagine their friendship and possible collaboration. Maybe....in heaven!? Her latest post "A Cripple Danced at a Gay Cowboy Wedding" is not to be missed.

Jason Picetti is young, smart, a self proclaimed nerd/former math teacher and writes the blog Adventures of ALS Boy. Jason teamed up with Carla and was photographed, wheelchair and all, surrounded by a bevy of very sexy looking young women. All in the name of raising awarenss for ALS. "We're Bringing Sexy Back" is his account of the recent photography session. Jason, like Carla writes from the heart. "Last Call" is just one of a hundred+ gifts of insight that will allow his baby girl Emma to know the dad that will be taken from her too soon. His wife Fehmeen is gracious and shares Jason's ability to look at the funnier side of life.

Last, but certainly not least is Sarah Ezekial who has made it her life's work to raise ire and eyebrows, as well as awareness for ALS or MND (Motor Neuron Disease) as it is known in the UK. Sarahville is one of my new favorites for a variety of reasons....but mostly because, like Carla and Jason, Sarah doesn't flinch. She tells it like it is and isn't afraid to shake up the status quo. Please take the time to read "MND is..." including the embedded link to "Is my pain really too shocking for television?". The advert (in America we say commercial, but advert is so much cooler!) "Sarah's Story" is brave, direct and has created a lot of conversation...proving once again that one person can indeed make a difference.

Who are your ALS heros? Cheers!

http://www.flickr.com/photos/sheeprus/ / CC BY-NC-ND 2.0

Developing YOUR Story - a few tips/tricks

2009-10-20T14:20:00.000-07:00

My best friend got married this past Sunday and as her coordinator, I have been consumed with ALL things wedding related. It was a GORGEOUS wedding, perfect in every way. So....now I'm back to the real world and realize that a month has passed without a new entry to Defeat ALS. My how time flies!

In the past, on a number of different occasions, I've mentioned "telling your story". Generally it's been in the context of advocacy and involvement with changing public policy. I believe you need to be able to tell your story, in a concise and compelling way so that you can inform and educate, whenever the opportunity presents itself. With ALS, this is particularly difficult, but critical, since few people know much beyond how to spell ALS. Each time I talk about developing a story, I get a blank look or the question "how do I do that?" It's hard to tell someone else how to write their story....I don't have the same perspective, experience or voice. And besides....it's not my story to tell!

A few months ago, a childhood friend referred on of her friends to me for support, following the loss of her father to ALS. Today's post is my response, which includes my thoughts on how to develop and tell your story. I hope you find it helpful as you document YOUR story.

Dear Denise...

It's taken me a couple of days to think about your question and to (hopefully! answer in a thoughtful way. I'm thinking that the true goodness of Facebook is that we don't actually need to know each other - we can be brought together by a mutual friend. Because we share a very special bond - I'm pleased to "meet" you! First I'm so very sad that you lost your father to this s^%&ty disease. While there is never a "good" time to lose someone you love, I'm sure that losing him just before you delivered your daughter was especially difficult. I can't imagine that pregnancy hormones and the joy of a new baby mix very well with grief. Thank you for your kind words regarding my husband. This is an especially difficult time of the year for me, so I truly appreciate your thoughtfulness.

Congratulations on making the decision to participate in the Idaho Walk to Defeat ALS. I found the walks a good way to channel my grief - I had something to focus on besides a broken heart. The walks are also a good way to organize friends who want to help you. Unfortunately I'm going to agree with your friends and tell you that telling your story is the best way to educate people about the disease and to work through your own grief. You don't really have to go into anything long or drawn out. the good news is that the story will get better and your delivery will get easier over time. Interestingly, this was one of the Twitter messages in my inbox this very morning!
"@schwerdtfeger: Speaking: Don't look for grandiose stories. Tell stories about YOUR life. The audience will connect with the emotions you describe."
Your ultimate goal is to educate people about the disease, share your experience, talk about what the ALS Association does to help people with the disease and then ask them to help you honor your father by supporting the good work done by the association. I believe your focus on raising money to find a cure will ultimately help you speak. Here are a couple of points to consider as you craft your own story.

When I share my story, I will generally start by asking someone if they are familiar with ALS. Depending on the answer, I might add, "You may have heard it called Lou Gehrig's disease." 90% of people will recognize it then. Lately I've added that we just celebrated the 70th (yes 70 years!) anniversary of the famous speech give by Lou when he retired from the Yankees in 1939 because he was too weak to play ball. You may have heard the speech. I call it the "luckiest man speech" and there are lots of versions out on YouTube or the Lou Gehrig Wikipedia page. Major League Baseball did a pretty big push earlier this month, so folks may have seen some of the stories and advertising.

I talk briefly about the statistics. In the US, 16 people will get an ALS diagnosis today and 16 others will die from ALS. One person every 90 minutes. Less than 10% of the cases are geneticly transmitted and veterans returning home from mid-East conflict duty are twice as likely as the general population to receive an ALS diagnosos. ALS is truly non-discriminatory. It strikes young (17), old (83) and everyone in between. My husband was 49 years old when he was diagnosed. Whenever somebody asks me "why?" to any of these questions, I am hones and say I don't know. Scientists are working on it, but there's been little, significant progress. And I'm getting pretty impatient!

Then I move into helping people understand the disease. I recently came across a wonderful analogy that people "get" right away. Talk about "...being on the beach with sand for miles around. We've all seen the dads who allow their children to use their plastic pails and shovels to bury them in the sand. When the children finish the project they are generally happy with their work and the dad looks indulgent. You see the dad's head sticking out of the sand, he's fully aware of what has happened/is happening, but cannot move anything. He cannot even get out of the sand by himself". Then you can say...."imagine what that might feel like." And then let that sit in the air for a couple of seconds. Then you can quietly say, "that's what it was like for my dad." I promise you, people will have a new understanding of ALS!

You can then share a quick story of what it was like for you as a caregiver and how hard it is for you that you lost your dad before he could even hold his first grandchild. Your daughter will grow up with stories about her grandfather, but won't have his knee to climb up onto to share a story. Carry tissues for a while, this part will be hard, but it really helps people connect with you and your loss. Take a deep breath and settle yourself.

I would then talk about the walk and why you are asking for money, especially in these tough financial times. I find that talking about honoring my husband's memory works pretty well. I also talk about the support groups and regional care managers funded by the association. If your dad benefited directly from the services offered by the chapter, PLEASE SHARE this information. Talking about the good work done and how you/your family personally benefited, makes it real! I will sometimes talk about how expensive the disease is, especially in the late stages, often running $225K annually for equipment and full-time skilled care.

Finally, I come back to Lou Gehrig. I ask people to think about the diseases that have discovered, in the past 70 year...like AIDS, Breast and many other types of Cancer, Parkinson's, MS, Swine Flu and more. In our lifetime, researchers and scientists have been able to find what causes these diseases, created tests for early detection, have found therapies to help patients manage symptoms and to extend life and/or live relatively normal lives. None of this has happened for ALS.

I then ask them to walk with me or to go to the website and sponsor me. I talk about the walk and joining Bill's Brigade. If they can't walk, I ask for sponsorship. I've taken checks for $25, $50 (and more!), but lately I am asking people to think about a regular monthly pledge of $10. It's only $2.50 per week, less than a fancy coffee drink at Starbucks, but it really means a lot to the chapter to support their work. Most people can find $10 a month in their budget and not miss anything important in their household. But $120 annually to the chapter is significant!

I can also tell you that this is a very effective way to craft an email campaign. Go to the Walk website, register a team to honor your dad, and then us the email tools provided by the chapter to send "your story" out to all of your friends/family via email. When I use this method, I thank them for their support and ask them to pass the email on to their friends and family. SOMEONE else has been impacted by the disease and will want to help you out!

I sure hope this helps!! You are in my thoughts and prayers and I appreciate your trust in reaching out to me. Please give my best to Brenda.

Kathie

ALS patients are not babies...

2009-09-19T01:00:00.000-07:00

I've become a fan of Carla Zilbersmith. Which actually kind of sucks for me because I didn't know her before ALS and would have really liked to. My loss. My only consolation is that I am able to read her blog, admire her joie d'vivre and truly appreciate the tremendous effort that goes into each of her narratives. Her recent post, Big Baby on Carla Muses had me laughing AND crying as I recalled some of the caregiver/patient moments I experienced with Bill. My post today is from the opposite end of the continuum.

For the record, we did not have babies, we had a three year stint as legal guardians for three 16 - 19 year olds. My skills were just as limited and impatient as Carla described, so you can only imagine the conversations between the two control freaks living in our house! To Carla's point, it is painfully frustrating (even without factoring in the potential humiliation) to be an adult who is no longer capable of operating independently. It is all too easy to treat an ALS patient or an elderly relative as if they are a small child, even when we are fully conscious of the fact that they have learned full well how to dress, bathe, drive, and more. Please repeat after me:

It is not ok to treat an ALS patient like a baby, not even when or if they are acting like one. ~William Neil Lichtig

Each and every day some bit of independence is stolen from these loved ones, and deposited into the hands of a well intentioned caregiver.  And it happens of necessity, not because you and the patient came to some sort of mutually agreed to arrangement!

Take a minute to reflect on what it might be like if the circumstances were reversed. Would you be a "good" patient? Would you trust and allow your spouse, child, parent to be your caregiver? How would you negotiate the boundaries and know when to speak up or shut up?

Think about it. When you are rushed, it is much easier and certainly more efficient to put the shoes and socks onto a pokey toddler who is learning to dress on their own. However, we cheat them of the opportunity to learn independence. It's natural to yell "hurry up" when someone is dawdling. After all, there are place to go and people to see and we're on a schedule. In the same way, it's easier and much faster to do everything for the ALS patient you are caring for, ultimately shortening the dwindling thread of their independence and cheating you of some much needed respite! I am not for one minute suggesting that you allow anyone, child or adult, do anything that is dangerous or will result in serious injury. But I am suggesting that it is in your best interest to slow down and work to encourage/retain independence for as long as possible.

I consider myself pretty fortunate that Bill was able to adjust quickly to his circumstances and remind me ever so gently (...not!) of what he was still capable of doing. He could no longer manage the wash, but he could handle the dryer. He couldn't carry groceries with his hands/arms, but if I could hang the bags onto the handles of his wheelchair or the boxes of soda onto his lap tray, he could zoom up the ramp into the house while I secured the van and he would keep me entertained as I put things away. He could still carry his share of the load, and sometimes all of it!

I learned to make myself scarce but stay within earshot so that I could protect myself from the heartache of watching my husband struggle to button his shirt, brush his teeth, walk any distance or any one of a hundred other little tasks. I learned to tell him he had to do the best he could while I took care of something else. And I learned to ASK him first, to see if he really needed my help to complete a task. We learned to build more and more time into the schedule to accomodate his needs and capabilities.  And just as the world doesn't stop spinning when the kid goes out in mis-matched socks because everyone was rushed, it didn't stop when it took us an hour and a half to complete the grocery shopping instead of 45 minutes!

Caregiving is a full-time gig. It's demanding and generally exhausting work. Change is not easy. Work together and do not willingly make this job any tougher, any sooner, than you have to. It would be great to hear how you manage this delicate dance.

Calendar Girls (and Guys!) for ALS

2009-09-16T01:00:00.000-07:00

Carla Zilbersmith is extraordinary. And...she has a great idea! I am posting this to help her find the 11 patients she is looking for! Please contact Carla directly if you are game to join her!

TO FELLOW ALS PATIENTS:

My name is Carla Zilbersmith and I was diagnosed with ALS in December of 2007. I have been thinking about something I would like to do to both raise awareness and raise funds for ALS research but I need the help of 11 other bold people with ALS.

I would like to create a cheesecake calendar using ALS patients as models. I’ve seen calendars like this to raise money for cancer but they have always used friends and family members instead of the actual people living with the disease. I don’t know about you, but I don’t like to be marginalized because of the fact that I’m in a wheelchair or that I slur my speech a little. I feel like I’m the same person inside and I am forever looking for ways to remind people of that fact.

Here’s what will happen: If you’re even remotely interested in participating in this project, you will email me at carlazilbersmith@yahoo.com with your questions as well as any concerns that you might have. I will arrange for a photographer or photographers to take our pictures and wrangle someone to help with hair, make-up, and clothing (Obviously, men won’t need make-up and bald people won’t need hair styling). The photo shoot should take no more than 2 hours of your time including make-up. None of the pictures will involve nudity but they will be provocative. You don’t have to consider yourself “hot” to participate and ideally people at all stages of the disease from not even needing a cane to using a ventilator will be part of this. I want to show the world that we are more than a disease. I have been in the entertainment business for over 20 years and I know what I’m doing, so you can trust me when I say I promise you will not be embarrassed by the picture we choose and you will not have any pictures taken that you aren’t comfortable with.

I will find a printer and a graphic artist to donate their time to creating the calendar, which ideally should be ready by Thanksgiving so absolutely everyone can buy several as Christmas/Hanukah/Kwaanza presents.

I hope you will consider being a part of this project. We won’t raise millions of dollars but we will cause a stir, make some money, and let people know that we are alive and kicking until we’re dead. Thanks for your consideration.

Carla Zilbersmith

More comforting words....

2009-09-15T13:18:00.000-07:00

A few weeks ago I posted Comforting Words and shared the letter Bill wrote to me just before he died. The feedback/comments I received were wonderful and heartwarming....thank you! A few days ago, my mom sent the following, to be added to my "wonderful collection of quotes". I don't think she anticipated how much comfort it would bring me.

As you might imagine, with ALS a constant presence, Bill and I talked a lot about death and the process of dying. Not in a morbid or fatalistic way, but more from a perspective of curiosity and observation. We became avid students and both agreed that whether you believe in creation or evolution, the body is quite an amazing vehicle! My mom attended the memorial services of a friend of ours who died recently, not from ALS (thank goodness!), but rather in the way I hope to go...natural causes. Hilarie was well into her 90's and had lived a very full and productive life. She was sassy and good natured, right to the end, so I find this quote is especially fitting.

In coming to the realization that his life was coming to an end, Edward Madison Cameron shared these words with his aging body:

“When you can go no further, I shall leave you and be free… When we separate I shall continue to exist. A Power greater than you and I started us on our journey. Your journey is approaching its end and you are aware of it. My journey has merely begun and I know it because I have never felt more alive. Our separation is, therefore, not one of sadness, but of joy. You are weary and want to stop. I am longing to alight from this slowing vehicle and go on without you.”

To my dad, Bill, Hilarie, and the many friends and family members who are no longer with me physically, I toast your spirit and offer a prayer of gratitude for the many gifts of love and life you've left behind.

Dignity, Self Sufficiency and Safety...PRICELESS!

2009-09-04T15:49:00.000-07:00

Earlier this week I posted Why does fundraising for ALS matter...really? I received some feedback that the story got lost in all of the gadget photos. So I decided to separate them. I just adore technology!!!

Dignity, Self Sufficiency and Safety may be priceless, but they DO come at a cost. That's where each and every donor hero comes in! Yep...you are (or can be!) a Donor Hero. And trust me...that too is priceless! Please understand that ANY donation, no matter the size is put to good use by any number of organizations serving patients and families with ALS, such as Augies Quest, ALSTDI, ALS of Michigan, or the ALS Recovery Fund. Bill and I were blessed to be associated with the ALS Association Greater Bay Area Chapter. But there are many others - use GoodSearch or Google to find an organization near you. BTW, GoodSearch is a great way to donate "passively" to the organization of your choice!

Here are a few of the zillions of ways your donations and fundraising efforts can help a family living with ALS:

A $25 donation allows a patient DIGNITY and SELF SUFFICIENCY.

Built up utensils, straw holder, scoop plate and a grip cup allow an adult to feed themselves

A Button/zipper pull and a key turner allow independent dressing and access to the home

A $50 donation purchases SAFETY...Bathroom grab bars and a shower chair retain independence and safety around the toilet and shower. A Gait Belt allows a caregiver to safely transfer a patient from bed to chair and back, protecting their back and retaining safe control of the patient.

$1 per day Provides speech amplifiers for those whose voices are now too faint to be heard. or Helps a family transport their loved one to a clinic visit. or Offers an hour of a Chapter Care Manager’s expertise.
ALSTDI estimates that it takes $100 to fund 1 minute (60 seconds!) of ALS specific research. Remember we still don’t know what causes ALS which means we cannot begin to find a cure for ALS.
A $500 donation allows an ALS specialized Regional Care Manager to do their job for 1 week. Every day, our Care Managers assist patients by recommending community resources for financial/emotional support, securing appointments for power wheelchairs, providing recommendations for in-home care, recommending speech devices, reviewing physical therapy techniques, checking in on a patient who lives independently, delivering educational presentations to a wide variety of audiences, coordinating equipment loans/transfers between patients and vendors, and so much more.
$1000 supports specialized care at an ALS certified clinic, where patients see a battery of specifically trained medical professionals – Neurologist, nurse, occupational therapist, respiratory therapist, speech pathologist, physical therapist, social worker, augmentative communication specialist, and physical therapist. Consider that these costs are not always covered by insurance!
$2000 supports the MDA's Durable Medical Equipment program - specifically the grants for motorized wheelchairs, enhancing mobility and independence

How have you been supported by an ALS organization? Please give a shout out to the heros that help make each day a tiny bit better. Thank you in advance for your generosity. Together, we can make a difference. But it WILL take all of us.

Calm in the midst of a storm.

2009-09-04T11:47:00.000-07:00

I have often joked, "pick your own natural disaster and call it home". Me...I live in earthquake country. It's crazy I know, but a small price to pay to be within 4 hours of any kind of weather I want, exquisite dining and culture, the Golden Gate Bridge and a short drive to some of the best wines in the world! For you, it may be floods, hurricanes, searing heat, sub-zero cold, tornados, or humidity (that acts like MiracleGro® to blood-sucking mosquitos!), but we all brave the elements, wherever we live.

Because there is generally no warning before an earthquake, there are measures I have taken to be prepared for when the "big one" hits. I check my supplies at least once a year, but for the most part, I don't have to think much about it, because I can physically go to that spot whenever I am feeling anxious, touch the supplies/check my list and ground myself with a measure of confidence. In addition to regular fire drills (stop, drop and roll), evacuation drills (remain calm and move quickly to the designated area) and earthquake drills (drop, cover and hold on), I know that if the time ever comes, I can go my spot, take a deep breath and remind myself that whatever else happens, at my core, I have the basics covered, I've practiced and I'll be ok.

Friends who know me well, know that I am a great believer in the natural order of the universe. Everything happens for a reason. There are no accidents. Most of the angst in the world results mostly from our own perception of words, circumstances or specific situations. Life and its experiences (good and bad) come at us thick and fast. We just catch our breath and we're on to the next "adventure". For me, it's not what happens, it's how I handle or react to what happens, that ultimately makes the difference in whether an event bends me, breaks me or catapults me forward into something infinitely better. My reaction ultimately determines my resiliance and perception of the event.

And...I can hear you all loud and clear! "Hey Kath...wouldn't is be just ducky if there was an emotional disaster preparedness kit?" A great question and there is! Today's post from the DailyOM - one of my favorite websites - reminds me of exactly why I subscribe to their daily newsletter to help me stock my psychic supply box with everything I could possibly need to weather life's storms.

This site is an online fountain of inspiration and practical tools to help each reader find his/her own center in the midst of the crazy, fun, chaos we call life. Their tagline is "Nurturing Mind Body and Spirit" and for me that is exactly what they deliver. Day in and day out the writers at DailyOM deliver a thoughtful and positive message, complete with practical suggestions, that reminds me of the emergency/disaster preparedness kit I have for the times when Mother Nature gets fussy.

Today's message is literally about taking a deep breath in the midst of all of the swirling and noise to touch base with our inner source, as a way to safely anchor myself to the universe and remember that I have everything I need to weather any (perceived!) threats to my emotional stability. I also subscribe to their daily horoscope and am frequently amazed at just how targeted the message for the day is?! I am regularly reminded that it is in my best interests to listen to and value the thoughts and opinions of others, and patience is a virture for which I will always strive! Some days I'm quite sure there's a secret satellite webcam following me so the writers will know EXACTLY what message I need to heed!!

So how about you? What do you do to keep your balance when the inevitable storms hit? Please share your stories here. In the meantime, "Cool Runnings" Peace be the Journey!

Why does fundraising for ALS matter....really?

2009-08-31T13:10:00.000-07:00

For the next ten minutes, I’d like to have you “unplug”, read and absorb the following words. After reading the next few paragraphs, please close your eyes and really paint this picture in your mind. Ready?

You and your family have decided to enjoy a beautiful, sunny day at the local beach. You pack your picnic basket and enjoy the drive. You have laughed watching your children dig a rather large hole in the wet sand. You think to yourself, this was a great idea…it’s so good to get out, enjoy the sun and watch their joyful play!! After much pleading, coaxing and cajoling, you agree to be buried in their sandy pit. Before long, one child has been working at your feet. They are now covered with wet sand and you can’t get away. In the meantime, another child has been dumping buckets of wet sand onto your left arm, and pretty soon, you can wave to your spouse with your right arm and shout out that you are having fun. The children see progress and several other children join in so they can quicken their pace! Pretty soon, your left arm is buried and they are making good progress covering your legs, hips, waist, chest and finally your shoulders. Now…only your head is visible.

You know exactly what is happening, and it is quickly apparent that you are at the full and complete mercy of your children! And, by the way, remember the sand is wet, so it’s heavy on your chest, and you realize that it’s getting a little difficult to breathe. Your stomach growls and you convince the children to bring you some fruit and something to drink. You instinctively reach out to get your snack, only to discover that your hands are useless, you are truly not capable of feeding yourself. Your children laugh and scamper off to chase the waves. You cannot move and you know it.

At some point, you have convinced your children – via pleading or threats of death before their next birthday – to dig you out. It takes a bit, but you are free and the only sign of your ordeal, is that you are covered with sand, which is quickly washed away by a quick dip in the water. You are once again fully functional and independent. For an ALS patient, there is no gleeful option to “dig them out”.

Tomorrow, as you (without assistance) get out of bed, stretch, eat your cereal, take your shower, get dressed, walk to your car, enjoy your Starbucks®, curse your allergies and blow your nose, go about your busy workday, navigate the traffic home, take the dog for a quick walk, enjoy a glass of wine with a juicy steak, hold your children as you read their bedtime story, bend over and pull up the covers to tuck them in, brush/floss your teeth, use the toilet, take your medications, put on your pajamas, climb into bed, read for 10 or 15 minutes, kiss your spouse, reach up and turn out the lights…please think back to the beach scene and consider that EVERY 90 minutes, of every day, ALS claims 2. Someone will get an ALS diagnosis and start the descent into the sand pit of complete dependence on a family of caregivers. And one will die from complications of ALS, usually because they can no longer breathe.
Now…again with the beach scene firmly in your mind and, because you can, I ask that you take the following three steps. Make a difference for the hundreds of families living with ALS who are served by the ALS Association in your community.

Put on your tennies or ride your bike for a wheelchair bound patient in one of the Walks/Rides to Defeat ALS to be held around the US this fall. Please click http://web.alsa.org/site/PageServer?pagename=WLK_BP_stateselect to find the most convenient ride/walk and sign up today. While the economy struggles to get back onto its feet, consider that most ALS patients are trying to do the same and need your help – today more than ever. There are a number of examples below which will help you understand the safety, dignity and independence your generosity provides. I recommend a monthly donation of $5, $10, $25, $50, $100 or more (whatever your budget allows).
In addition to your personal donation, make a commitment to raise $250. In the advanced stages, care for an ALS patient can reach $250,000 annually. In the early stages of the disease, your donation can buy independence, safety and respite for a patient or their family members.
Pass this message along to everyone in your address book. Share it with friends, family, neighbors, co-workers, schoolmates, teachers, and local business owners….everyone within your sphere of influence and ask them to join you on the walk and to make the fundraising commitment.

Thank you!

Tentra Progress Report - Week 1

2009-08-25T15:01:00.000-07:00

Last week's post regarding the Tentra as a prescription for daily living has turned out to be a great way to channel my blues! I'm starting to feel more like "me" again....here are a few of the highlights:

Give people more than they expect and do this willfully.

Work has been somewhat challenging. I've made it a point to ask about the "next steps" for each of my tasks. Most of the time, my colleagues have appreciated the extra effort. I've appreciated that fact that I at least asked/offered.

When you say "I love you," say it truthfully.

I've adapted this slightly to recognize and demonstrate appreciation for people in my life and to be specific about what they mean to me. I found a set of quotes over the weekend and have posted them to Twitter, recognizing specific Tweeps for what they bring to my life. It felt really great to recognize someone I've never actually met!

Never mock other's dreams.

I'm generally pretty good at encouraging the dreams and aspirations of those I love/care about, so I had no thought that this would be challenging for me. That is until my sister-in-law shared a "vision" that she had about her late husband (Bill's older brother) and then asked me if I thought she was crazy?! I found myself answering "It's not uncharacteristic, but if you think you did/are doing the right thing, then it only matters what you think and I will defend you to my last breath". She laughed and said she loved me - and it was a big deal for both of us!

Talk slow, think fast.

This still needs work!

Bless a person who has just sneezed.

Saying "Bless you" or "God bless you" is almost reflexive for me. But this week, paying attention to my intention I noticed the most of the folks in the surrounding cubes (including me) suffer from significant allergies. We're all convinced it's the circulation - which is good for all the desktops, but not so great for the humans. We are quite a sympony of sneezing, sniffling and nose blowing, punctuated by a chorus of "Bless you's", no matter who sneezes. I'm thinking of trying accupuncture as an alternative to Zyrtec and Puffs!

Spend some time alone.

I am really comfortable on my own and am fortunate to enjoy my own company. Maybe sometimes too much! I probably need to re-think this suggestion and consider reaching out a little more. Just a thought....

Read more books and watch television less.

This is pretty easy since I don't have cable. So I don't watch TV unless I'm traveling and staying in a hotel. And then...I'm a channel surfing, clickker crazed maniac! I fairly certain I have undiagnosed ADOSD (Attention Deficit Ooooohhh Shiny!!! Disorder), so I tend to read magazine articles. They suit my short attention span. It's hard for me to pick up a book and read. Tech geek that I am, I purchased a Kindle from Amazon and boy is it neat!!! I'm reading "The Zen of Fundraising: 89 Timeless Ideas to Strengthen and Develop Your Donor Relationships". Hey....it's a start!

Be gentle with our planet Earth.

As a youngster, I was very active in a Masonic youth group called Job's Daughters. One of the promises you make when you join is "I will try to do at least one useful act each day". Every day this week, I have picked up bits of trash that have been in my path and paid closer attention to my recycling habits. It really took me back to my childhood and that earnest promise to do or be helpful...every day. It's amazing how much litter there is!! I've felt like I was picking bits of lint off Mother Nature's beautiful dress. It's so easy to just pick it up and deposit it into a trash can. And it truly felt good to do something that only I knew about.

I'm not generally fond of having my photo taken, but my niece shot this when we were in Coronado (San Diego, CA) for a family reunion a few years ago. I love that she took the photo and that I am this close to the water! And yes....I am very fond of my bright yellow shawl!

That's it for me this week. How have you done with this list - let me know!!

The Tentra Totem - A Rx for Living

2009-08-17T13:26:00.000-07:00

The key to getting over a case of the blues is to get out of my head. I mean, I have to literally take steps to stop THINKING! About me, about my troubles, about my blues. It's not ALL about me!! One of the best lines from the baseball movie Bull Durham is when Kevin Costner says to Tim Robbins “Don’t think ‘meat’, you just hurt the team.” Not so easy to do, but when the student is willing, the teacher arrives!

Over the weekend, I came across one of those chain emails (the ones where you almost reflexively hit delete!) that I read and then copied/saved, thinking at the time I suppose, that it might come in handy some day. Re-reading it yesterday, it seemed more like a “bucket list” for everyday living. And then it hit me! I can follow the suggestions on this list as kind of an antibiotic for the blues! So...it is my intent to follow this "Rx" for the next 30 days, as a gentle reminder of how much abundance I currently enjoy and practice some good, old fashioned gratitude! I'll keep you posted on my progress!

This Tentra Totem has arrived from India and was sent to you for good fortune. It has already circled the world 10 times. Whether you believe in superstitions or not, devote a few minutes to read the Tentra, good
fortune will reach you within four days from receiving the Tentra. Share the link to this post to whomever you think is in need of good fortune.

Eat plenty of whole rice.

Give people more than they expect and do this willfully.

Learn by heart your favorite song.

Don't believe anything you hear and do not sleep as much as you would like to.

When you say "I love you," say it truthfully.

When you say "I'm sorry," say it with eye contact.

An engagement period of six months is crucial before marriage.

Believe in love at first sight.

Never mock other's dreams.

Love deeply and passionately. You may get hurt, but this is the only way to live life at its fullest.

Deal with discontentment, fight fairly, but do not offend.

Do not judge others because of their relatives.

Talk slow, think fast.

When someone asks you a question you do not want to answer, smile and ask, "Why do you want to know?"

Remember that the greatest love and the greatest success also hold many risks.

Bless a person who has just sneezed.

When you lose, do not lose the lesson.

Remember: respect for yourself, respect for others, and respect for your actions.

Do not allow a small disagreement to hurt a great friendship.

When you notice that you have made a mistake, take the appropriate steps to correct it.

Smile when you answer the phone. Those who call can "hear" your smile.

Marry (or be with) the person you love talking to the most. When you get old, conversation will be more important than anything else.

Spend some time alone.

Accept change with open arms; yet do not give up your values.

Remember that sometimes, silence is the best answer.

Read more books and watch television less.

Live a good, honorable life. Later, when you grow old and remember the past, you will enjoy it once more.

Believe and trust God, whomever/whatever you conceive God to be, but securely lock your car.

An atmosphere of love at your home is most important. Do all that you can to create a calm home full of love.

Do not bring back the past.

Read in between the lines.

Share your knowledge. It is the way to live forever.

Be gentle with our planet Earth.

Pray. Prayer has incredible power.

Never interrupt someone who flatters you.

Take care of your problems.

Do not trust a man or woman who does not close their eyes when you kiss them.

Once a year, visit a place you have never seen before.

If you make a lot of money, channel it so as to help others while you are alive. This is the greatest satisfaction a treasure can reward you.

Remember that sometimes, not getting what you want is very lucky.

Learn all the rules and then break some.

Remember that the greatest relationships are the ones in which the love between two people is greater than the need one has of the other.

Judge your success in light of what you had to give up to obtain it.

Relate to love and to the kitchen completely. (All the reason you need to see the movie Julie and Julia!)

I hope you enjoy and are inspired!

Support Group - Strength and Knowledge in numbers

2009-08-16T15:15:00.000-07:00

I am very fortunate to be able to attend a local ALS support group, supported by the Greater Bay Area ALSA chapter, located in Northern California. Each month, anyone from the area is welcome to share a cookie, their story, and learn firsthand about how to cope with ALS. More importantly, in my opinion, is that for just a few minutes, attendees know without a doubt, that however hideous this disease is, one does not have to fight alone....there are others on this same journey.

I am always impressed by our group leader Eileen Nevitt's ability to secure top flight speakers. A few months ago, Dallas A. Forshew, R.N., BSN Manager, Clinical Research (ALS) at the Forbes Norris ALS/MDA Clinic gave a presentation on the ABC's of ALS. We were fortunate that she allowed us to film her presentation, which can be found on the chapter's YouTube channel.

Yesterday, Margie Petrakis, RRT, RN and one of the outstanding Regional Care Managers in Northern California, gave an informative and comprehensive presentation on respiratory care and equipment for ALS patients. 90 minutes passed quickly as she discussed the physical mechanics of breathing, what happens to patients with ALS, and the various options to manage symptions, available to patients to maintain good quality of life.

Maintaining respiratory health is important, regardless of an ALS diagnosis! While especially important for ALS patients, some of the very basic things we can ALL do keep breathing easily are:

NO smoking!
Early detection and treatment of everyday illness - don't let a "little cold" grow up!
flu/pneumonia vaccines
avoid infection - steer clear of favorite germy hotspots like crowds, public transportation, doctor's offices, sick people, magazines, grocery carts, kindergarten classes, etc. and, if you must venture into these places, take precautions like paper masks, hand sanitizers, disinfecting wipes.
Wash your hands!

Respiratory Care for an ALS patient breaks down to three major components: Testing, Treating symptoms, and Follow-up (clinic and home care).

Testing determines how efficiently your respiratory system is operating and gives clinicians the necessary data to make appropriate recommendations for your individual circumstance. In addition, you and your primary caregiver are the most reliable source for what is "normal" for you. You know your body best. In order to determine the best possible solution for you, it is critical to participate and partner with your medical team. If you experience any of the following symptoms, please share them with your clinician, as they could indicate the need for additional testing and/or solutions to keep you running your best.

Excessive daytime fatigue
Trouble thinking or concentrating
Morning headaches
Not feeling refreshed in the morning
Frequent awakenings at night (known/unknown reasons, unusual sleep patterns, nightmares, night sweats, respiratory complaints)

Follow-up
Once you and your physician have agreed on a solution, COMPLIANCE is critical. And...it will probably take some time to get used to the new routine. Margie shared some helpful tips.

Choose an interface (mask/nasal apparatus) you think you can live with - there are many to choose from. Some vendors offer special 30 day trial programs.
Whatever interface your choose, make sure it fits properly (not too loose and not too tight) and that it doesn't leak into your eyes. An RT (Respiratory Therapist) can help guide you to finding the interface that is "just right" for you.
If the vendor doesnt respond, contact your physician immediately and request a change of vendors early!
Be persistent and keep trying. It may take a couple of tries to find the right solution.
Keep a positive attitude and work with your caregiver to make the necessary routine adjustments.
Enjoy the benefits of better breathing!

Each of us received a copy of "ALS Respiratory Decisions" A Guide for Persons with ALS and their families, produced and distributed by the Jim "Catfish" Hunter Chapter of the ALS Association. This concise and informative guide was written by Connie Paladenech, RRT, RCP with Sue Humphries, LMSW. I found this guide to be well written and as with all information written regarding ALS, is designed to provide some basic information. It should help guide the conversation with your professional health care team and is not, in any way, a replacement for sound medical advice. To find an ALS chapter providing services in your area, please visit the National ALSA website.

Comforting words

2009-08-10T10:29:00.000-07:00

Today marks the 4th anniversary of losing my best friend and life partner to ALS, a disease that sucks the very life out of anyone it touches. I share this final letter from Bill, in the hopes that it will inspire ALS patients to take the time TODAY to write a similar note and say everything you need to say…to your partner, to your children, to your grandchildren, to your parents, to your closest friends. Ask or give forgiveness and clear the air. Tell them you love them. Share your hopes and dreams for them. Whatever you choose, it will be great!

To honor Bill’s memory, I read this letter and (kind of!) enjoy my annual shot of Jose Cuervo. I laugh and I cry, but I am always comforted and reminded of just how lucky I am to have given and received unconditional love. It’s also the reminder I need that it’s safe to come out of “the cave”.

From: William Lichtig [blicht01@pacbell.net]
Sent: Monday, July 25, 2005 10:08 PM
To: Comm
Subject: Meow.doc

Meow;

We have reached the point all too quickly in my trek to the end of my life where everything that happens to me is not just a safety issue to both of us or, a health issue to me, but it seems literally life and death now. Sucks, doesn’t it?

My outside looks almost normal to people sprinkled with an occasional thunder storm that you have weathered with strength, dignity, and conviction, much stronger than I have.

The doctors can only guesstimate and treat by what they see and measure, but the soul makes the real BIG decisions on what happens to a person.

My body has taken control of itself, away from me, so all that is left of me that I can still control is my soul, my essence if you will, and even control of that is wavering more and more on a daily, sometimes hourly basis. Everyone has told me that my landing will be peaceful and quiet, with dignity. Can I just tell you the trip is anything but, sort of like our daytrips in Mexico!

I will miss your laugh, your snuggling, but most of all, your soul, your essence, that what makes you, you.

There is so much more I could say, but you know in your heart how much I loved you, through thick and thin. The fact that you have stuck by my side throughout this ordeal, being my voice when I could not speak and my staunchest advocate, has showed me your strong will, your dedication to our relationship and most of all, your love for me.

I am extremely sorry to leave our relationship this soon and this way, but we fulfilled our vows to each other, in sickness and in health, till death do us part.

I love you.

B.

100 things, leading to a single choice

2009-08-09T19:28:00.000-07:00

Last week, the LA times published a beautiful piece written by Martin Welsh, who is the cousin of Jared Gill, one of my fellow ALSA board members. I was truly moved by the piece and asked Martin if he would agree to be a guest writer for DFTALS this week. He agreed and I am thrilled to share his thoughtful essay.

By Dr. Martin Welsh July 26, 2009

I am a 55-year-old retired family doctor with a large, loving family and innumerable friends and former patients whom I see often. I am an extraordinarily lucky man. For the last five years, I have also been a patient. I have ALS (or Lou Gehrig's disease), a cruel neurological illness in which a normally functioning intellect becomes trapped in an increasingly weak and eventually paralyzed body. Soon, I will die from it.

Through my career, I tried to honor my patients' end-of-life wishes. But after a quarter-century as a firsthand witness to death, I've developed my own perspective. It's not that I'm a quitter. I have struggled against adversity of one sort or another all my life, and those challenges have helped prepare me for what I face now. I still delight in accomplishing difficult things, and I always wear a bright red ALS wristband that says "Never Give Up. "That said, there will come a limit. I have made it very clear to my wife, my family and my doctors that I want no therapy that will prolong my suffering and lengthen the burden on others. I do not want a feeding tube nor a tracheotomy when the time comes that I can no longer eat, drink or breathe for myself.

Physicians and families sometimes feel an obligation to do all that can be done to keep someone alive. I believe this is based in equal measure on a fear of death and on Western medicine's increasing ability to prolong life near its end. I was able to diagnose myself at a fairly early stage of the disease. My case was slower to progress than some, and so I was able to keep working as a physician for nearly two years. During that time, I was enormously grateful -- for my patients, for sunsets, for golf games with good friends. Life has been truly wonderful, even as I have slowly lost the use of my hand, then an arm, then both legs and my speech. But as much as I have stayed focused on what I am still able to do, it has become harder to ignore the things I am losing. Today, my guitars sit idle. I haven't used my stethoscope in years. My jogging shoes gather dust in a closet as I watch my belly grow from lack of exercise. I remember the last time I tried to shoot a free throw with a basketball and I was five feet short of the rim.

Today, I find myself facing the kind of "quality of life" issues I discussed innumerable times with my patients. Answers vary from person to person. But the fundamental question is always this: At what point is the quality of life no longer worth the emotional and physical costs of maintaining it? I am not afraid of dying or death, and that is a wonderfully comforting thing for me right now. I have seen so many "good" deaths in my time as a physician that I know this passage can be peaceful, spiritual and even comforting to those left behind. I hope for such a death.

I have also started to think about how I will know when I am ready for it. To that end, I often think about what I call the "100 Things." Here's how it works. Imagine a list of 100 things you do most days. Some are routine, some are "chores," some are pleasurable. Get out of bed and walk to the bathroom. Kiss your wife. Answer the phone. Drive your car to work. Go play golf with your friends. Brush your teeth. Write a letter, lick and seal the envelope closed and put a stamp on it. Hug your child. Of course we do many more than 100 things each day, but for now, just imagine 100 that are essential to the life you live. Now if you take away one, you can still do 99. Is life worth living without being able to smell the rose in the garden? Of course it is! How about losing two or seven, or 23 -- is life still worth living? Of course!
But suppose you get to where you've lost, say, 90 things, and now with each thing taken away, a bad thing is added. You can no longer walk well, and you start falling, and it hurts. Your grip is gone, and you also suffer the ignominy of wetting your pants because of bladder spasms. You can't turn over in bed, and that also means you will get bedsores unless someone turns you frequently. Life is still worth living, but you're getting tired. At some point, no matter who you are or how strong, you can lose enough things that matter -- and acquire enough negatives -- that the burdens will outweigh the joys of being alive. This is the stage when, as a doctor, I would reassure my patients and their families that they had fought the good fight and it was now OK to accept moving to the next phase.
I know I will one day reach that point. And that's why I worry about feeding tubes and ventilators. It has been my experience that these things are at times started almost automatically, and once they are started, they are next to impossible to stop. I have seen too many unfortunate people kept alive for years in hospitals or nursing homes, beyond all quality of life. Sometimes it causes untold stress in a family. Some of these cases even have made national news, and, unbelievably, our government and some national religious leaders even weighed in, as if they had a right to do so. I worry that at some point a feeding tube, or other artificial substitute for a basic body function, will be medically "indicated" in my case. Intervention at that time might seem to make sense to those around me. But the result may be that I am kept alive only to count off the remaining things on my list of 100, such that I am forced to live well past where I would want to say "Enough."

I like to know where a road leads before I set out on a journey. Right now, one path I could take leads to a place I don't want to go. I am determined not to start down that path, even if others think I'm being premature in my decision. In short, I may well be ready to die before my family and friends are ready to say goodbye. But they know that, as I face my diminishing list of the 100 things that make life worth living, the choice of quality over quantity has to be mine to make.

Reprinted with permission, this article was first published by the L.A. Times, July 26, 2009. Martin Welsh grew up in Los Angeles and graduated from UCLA Medical School. He now resides with his wife in Camino, Calif.

Gratitude

2009-08-07T15:55:00.000-07:00

I learned a very valuable lesson earlier this week and I want to thank you for taking me on as a willing student...and teaching me! In the past, I haven't been good about sharing my progress and setbacks in the process of grieving. I'm not too excited by my own company, so I certainly don't want to burden my friends! "The Funk" post was the first time I'd really been honest, even with myself, about how hard it is to grieve.

By reaching out, sharing my experience and asking for feedback, I received a wealth of warmth, personal sharing and encouragement, from places I never expected. Just like when I was a full-time caregiver, I am once again humbled by the lessons ALS has managed to sneak into my consciousness! THANK YOU!

4 months ago today, a young man named Drew Schemera earned his ALS wings and is free from this stupid disease. In his ethereal wake, he left a wonderful BLOG with a comprehensive set of links to ALS related sites. Even better...a fabulous (encouraging, thoughful, uplifting) playlist of 147 songs from all music genres. I'm listening to it as I write. #80, "You Get What you Give" by the New Radicals has become my new anthem! I'm sorry I never had the chance to meet Drew, but I am very grateful to his family for leaving his writings on the web.

Lesson learned: Be honest and reach out. There will always be a hand to clasp yours and a hand out of the funk can come from some unlikely places!

The "Funk"

2009-08-04T22:20:00.000-07:00

So....I haven't written for about a month or so. I've missed it, but the summer months are difficult for me. I go into a funk and climb into my "cave", a self imposed RIF (reduction in fun) to hibernate with my grief. I lost my dad in August. I lost my husband in August. I lost his brother in September. I can get through the routine stuff...you know, go to work, try and work out, pay the bills, wash some clothes, and the like, but that's about it. Every other bit of energy seems to be absorbed in this whole process of processing grief. It's a job!

In the year following Bill's death, I was completely numb. I went through the motions - 365 days passed and I could barely remember what had happened, let alone identify specific moments in time. The second year, I went into a dark place and couldn't identify what was happening. I couldn't shake the sadness. Just when I thought I would be OK, Bill's brother was killed in a freak motorcycle accident. I felt like I'd been pushed under water. The sadness in my bones lasted until after the first of the year and took the remainder of the year to melt away.

Year 3 approached and I really dreaded the summertime. I just knew that I was going to be sad, and sure enough... I received what I anticipated! However, my time in the cave didn't last as long and I was encouraged. Late last fall, during a period of intense introspection, I finally figured out (with much gratitude!) the source of my sadness. For me, summer and early fall are closely linked to loss of loved ones. To cope, my normally cheerful, optimistic self crawls to a place of safety (the "cave") and assumes the fetal position for whatever length of time it needs to sort through all of the feelings of anger, sadness, hopefulness and faith that are associated with loss, leaving the rest of me to cope with the world. For me, this period is now fondly referred to as "the funk". You might imagine that with the cheerful "me" on hiatus, the rest of "me" is not all that much fun - and you would be correct! I'm just not very good company during this period.

Coming out of "the cave" last year, I resolved to be more present with this period of time each year...to pay attention to what was happening to see if I might learn anything. It's odd paying such close attention to my feelings!? This year, I've noticed that the funk started a little later....and curiously it doesn't seem to be quite as intense this year. Good news! I'm hopeful that this hibernation period is brief and restorative!!

How do you handle grief? I'd love to hear your thoughts, so please post a comment!

Aftermarket add-ons for your wheelchair – Safety and Style

2009-06-25T22:18:00.000-07:00

A while back, I wrote about the horn Bill and his brother rigged up for his motorized wheelchair. If you missed it, read "Aftermarket add-ons for your wheelchair - The Horn". Here is the story of a few OTHER additions made to the chair...

We got the wheelchair in early March 2005. To break in the new wheels, Bill decided to take himself to the barber for a haircut. It was a perfect spring day and his favorite Supercuts salon was only about 2 ½ miles from the house. We knew he had enough power, so I checked his wallet on a string, fastened his seatbelt, reminded him about looking both ways at the intersections, kissed his head and sent him off. Little did I know my admonition would come in handy! About two and a half hours later he returned with a buzzcut and a “mad-on”. Dear Lord…he wasn’t gone that long, what could possibly have happened? Through his wild eyes and keyboard banging, I learned that drivers could not see him, they often honked at him, and a couple of times he felt really terrified. For the record, it’s not easy to scare a guy who made his living by running into burning buildings!

Over the years, I’ve learned that there are times when it’s best to just listen and not try to do or say anything. This was one of those times. Once his blood pressure was back into the range of normal, he announced that we were headed to a bicycle shop and Home Depot, in that order. I grabbed my shoes, my handbag and the car keys, and loaded us up into the van.

We got to our favorite bike shop and he sped right to exactly what he wanted – a bright orange flag, the kind that parents generally add to a tricycle or the bike of a small child. Next stop…Home Depot. That part of the trip did not go as smoothly! He was having a hard time explaining to me what he had in mind. Never mind that he had to use “talky” to try and translate! We started to draw a small crowd! Frustrated for both of us, I told him to stay put and went to find a hardware guy! The universe was truly watching out for me that day, because the first guy I found turned out to be an angel in an orange apron! Within just a few minutes, he completely “got” what Bill was trying to accomplish. While he was looking at the chair, he noticed that Bill had strategically angled his walking stick between the chair seat and the handles. He asked if that was working and the answer was “only part of the time”. They had another quick round of discussions and our new friend set about making the necessary alterations. About 20 minutes or so later, not only was the flag attached to the chair, but so was a piece of PVC piping. Both the flag and the piping were mounted to the back of the chair with metal brackets. The walking stick fit neatly into the pipe and his baseball cap fit over the pipe, keeping both close at hand. The flag actually had a joint, allowing me to detach the top part of the flag so that he could get in and out of the van easily. When it was in place, the flag extended approximately 3 feet above his head. It was just enough to make him feel safer when he was out and about on his own. It was really quite ingenious!

A few weeks later, our good friend “Aunty Em” gave him a bouquet of bright yellow (his fave color!) silk daffodils. He loved them and immediately asked me to stick them into the PVC pipe to wedge the walking stick. Turns out, the rattling was making him a little crazy and this was a perfect, stylish solution! The daffodils were a small bit of sunshine wherever he went and never failed to draw a smile.

In addition to the normal wheelchair adjustments and equipment additions we made to accommodate ALS as it progressed there was one final bit of flair added. The chair we received came with 3 sets of removable fenders. So his best friend took the silver set and with the help of an artist friend who details fire engines, added some hand painted flames to the otherwise vanilla looking fenders. When all was said and done….it looked like he’d won a trip to the reality show “Pimp my Ride”!

The addition of the flag allowed Bill to feel more confident when he was out and about on his own – a true blessing which allowed him to keep his independence just a little bit longer. The flowers and the flames were the icebreakers that made the chair a little less threatening to strangers and children. For me….I just smiled and was thankful that ALS only got his body and not his spirit!

Hey papa....I'm doin' OK!

2009-06-21T21:23:00.000-07:00

I no longer have men to honor on Father's Day. Big sigh! I am incredibly grateful to my mom who had to step up way too early to fill both roles when my dad was killed in 1986. She is awesome! I spent the weekend with friends and strangely, my dad and both of my grandfathers have been very close to me today. Note to self...it's probably because I finally slowed down a bit so that I could hear their wisdom! It's the end of the day and I've actually been feeling a little sorry for myself. Boo hoo...pity party's over!

A short history! I'm the oldest of three and my father's (and mom's) first daughter. I was the first grandchild for my mom's parents and the first girl for my dad's parents. In sales, this is called the "sweet spot!" My sister-in-law Flo reminded me tonight that I was truly blessed to have a dad who told me (as did hers!) that I could be and do anything I wanted. Both of my grandfathers spoiled and shaped me with equal parts of love and discipline. Over the years, I've spent countless hours crafting a card or saving money to purchase just the right card and gifts to honor the great men in my life. Tonight I realize that I honor each of them with the gift of the woman I have become, complete with a little tiny spark from each of them. Here are a few of the many lessons I have learned from three great men.

At two (ish), I was a driver...no surprise to those that know me, but in this case it's not a personality trait... I really thought I was a driver! I was left unattended for a split second, crawled up into the driver's seat of my grandfather's car, pulled the gear shift into reverse and gleefully rode backwards, down the driveway into the street of a very quiet suburban neighborhood in Van Nuys, CA. My Grandpa Bernie was a fair, but stern disciplinarian and as soon as I was pulled safely from the driver's seat, he administered a single, very firm swat to the seat of my too young to drive bottom. Tears ensued. I went to the judge of my favorite court...my dad...knowing that through my tears, justice would be served! "Grampy spanked me!" My father, an equally fair man heard both sides of the story, held me in his arms and decided in favor of the defendant "You probably earned it!" Case dismissed. I learned very early that there will always be consequences for my actions, but that I could always count on my dad to hear my side of any story. I love this photo of my sister "J" and me which was on my grandfather's dresser for as long as I can remember.

I moved away from home when I was about 23. My parents were equally supportive and helped with the move, but it was my dad who drove with me from Concord to Petaluma with the last load of my belongings. We talked about a lot of things that day, but I remember asking if he was going to miss me once I moved out. I had the cool parents growing up! After a long pause, he said no, that he was going to miss my friends. I was crushed and could not hold back the big aligator tears of my disappointment. He pulled me close and said that I would always be in his heart, so he would never actually miss me. It was a small consolation at the time, but over the years, I've come to understand this single moment in time from his perspective. As a parent, you pray that your children will make good choices when selecting their friends and associates. My parents believed that your character is measured by the company you keep. I am truly blessed and always have been, with some extraordinary friends. I have friends today, that never knew my dad, but I know in my heart that he would have loved them and would be proud of my choices!

From my grandpa Mac, I learned grace, quiet dignity and the fine art of entertaining seven young grandchildren at a formal dinner table. You can see from the photo there was a certain twinkle in his eyes that drew everyone in and made them feel special. My grandmother Gladys was certain that it was her sole responsibility to ensure that we were instilled with civility and table manners. She did a great job, but kids are kids and sometimes you just have to "bust out"...even if you're a big kid!! My grandfather would never defy or challenge my grandmother openly...that could only lead to the woodshed! However, he was a kid at heart and would slip us a piece of forbidden candy, whisper something funny to one of us and ask us to pass the "secret" to one of our parents, or some equally mild mischief. To which, my grandmother would often raise an eyebrow, give us all "the look" and order would once again be restored to her beautifully set table. At one holiday meal, with 15 or so of us seated around a very long table, my father (seated at one end) asked his father (seated at the opposite end) "hey pop, can you toss me a roll?" Without hesitation, my grandpa Mac selected a roll from the linen napkin lined basket and launched a perfect pitch to my dad, who was equally quick to raise his hands and form a two handed catcher's mitt. Thud! All eyes turned to my grandmother who had moved to the kitched for something. Not one single breath, peep, twitch, blink, or other movement came from 7 awestruck grandchildren and 2 nervous mothers, for a full 30 seconds. You could have heard a pin drop on the carpet!!! A (very, faintly) fleeting smile accompanied her trademark raised eyebrow and everyone let out a collective breath. I can only imagine the conversation my grandmother had with my grandpa that night after we were all safely in our respective beds!! The lesson I learned was that good table manners matter, sometimes you need to be serious, but when it gets too serious, it's a good practice to toss a roll!

My dad was and will always be a super-hero. This is one of my favorite photos from when I was in Job's Daughters. The final lesson learned from my dad that I will share tonight is this. It is not the job of parents to just hand things to children or to do all their thinking. My dad told me regularly that his official job was to teach me to think for myself. He and my mom believed that parents are responsible for raising children who can operate independently in the world. His job was to think for himself and just stay a little ahead of me so he would always seem to be wise!

If you think about it, it's really too much work to think for two people. My gift to my dad tonight is to acknowledge the following exchange between us... the coolest gift my dad ever gave me. "Dad...I'm doing/planning to do XYZ". "Are you sure you want to do that?" "yeah dad...I'm sure". "Are you SURE, you're sure?" "Absolutely!" "OK. I have band-aids and bactine ready on the sidelines. The next time we talk, I'm gonna patch you up, pat you on the behind and send you back into the game...cool?" "OK dad...what is it that I'm not seeing?" "I raised a very wise and beautiful daughter!"

To my dad and grandfathers...you rock! I miss you so much, but know that I am a living tribute to each of you. I am grateful for your love and strength. To all the dads out there....EVERY SINGLE DAY is Father's Day. Hug your daughters tight and tell them you love and respect them. Remind them daily they can do or be anything they choose. Tell them you are honored they carry your name and that you are their #1 cheering section. Tell them you will always be on the sidelines with bandaids and bactine. Love them as you patch them up and send them back into "the game" of life. Tell them you pray they will marry men who will respect and honor them. Teach them to hold out for those honorable men. It is the single best gift you can give us.

"It gets a whole lot more complicated when you have kids...The most terrifying day of your life is the day the first one is born...Your life as you know it is gone. Never to return. But they learn how to walk, and they learn how to talk...and you want to be with them. And they turn out to be the most delightful people you will ever meet in your life." Bob Harris, Lost in Translation

Learning to laugh

2009-06-17T09:59:00.000-07:00

ALS has taught me to laugh. Really laugh...from your belly until you start crying...laugh! And...I'm so very grateful! There are so many scary, crappy, outrageous, ridiculous, sad, terrifying, (name that emotion) moments with ALS. With that said, there are also a lot of really funny (slapstick comedy) moments with the disease, and these are moments I treasure most. They get me through the "I'm so sad I'm sure I can't breathe anymore" moments I still go through almost 4 years later. I have learned..it's not what happens, it's how you handle what happens. Laughter was the life saving/relationship saving option for us. Here are a couple of my fonder moments....

Fun with Feeding tubes

The body is a closed system! When you introduce a hole (feeding tube), you "open" the system - but it can be managed. It requires that you pay attention and be completely present to the moments when the system is open! BIG NOTE HERE....If you don't keep control of a feeding tube, you allow pressure that is normally controlled by a stomach wall to run free, and you end up with stomach contents on the ceiling! This BAD but can be especially entertaining if there was red liquid tylenol going into the tube when you let go!!!! Once I regained control of the tube, capped it off and caught my breath, I laughed so hard I cried!

Speaking of feeding tubes....There was a communicaton glitch between the surgeon and his staff when we had the surgery to install Bill's feeding tube. As we were finishing up in the recovery room, I remember saying to the nurse.."Um...Great…we are the proud parents of a feeding tube. I have no idea how to feed it, change it, burp it or put it to sleep! Now what?" Panic and shock ensued! There was a scramble to get someone to give me the fundamentals before we left the hospital. We got a full training the following day! Lesson learned: Humor helps get you what you need.

Garage Door Opener
Bill's brother Howard and another attorney friend of ours agreed to install a garage door opener for me. This led to the installation of an additional electrical panel. I know…who would have thought that an attorney could/would tackle this kind of task?! Bill was a little frustrated that he was unable to help, so he set about creating some mischief for his brother. He found a laser level in his toolbox, waited very patiently, and chose his time to shine a light on the work.

As Tom and Howard were very intently putting the final touches on the work, a tiny laser dot appeared on the wiring. Both men were fully aware of what they should be seeing on the panel and a laser dot was not on the list. Quietly, because he could not speak, Bill was doubled over in hysterics at his brother’s panic. Once the hysteria died down, we reminded Bill that any judge worth his robes would have dismissed any murder charges levied on the guys as justifiable homicide! I think of this story every time I watch a Powerpoint presentation and laugh! Oh…and the garage door opener still works perfectly!

Truly Living, an essay by Julia Miller

2009-05-26T17:57:00.000-07:00

Angels are delivered to us every day. Sometimes we know...and sometimes we don't. We were fortunate to receive help from EXTRA HANDS FOR ALS, founded by ALS patient Jack Orchard and his wife. Matt Nevitt and Julia Miller were the students who came every Monday for about 6 months to be with Bill and me, to help out and be our "extra hands". I will always be grateful to, and hold a special place in my heart, for both of these sefless young adults. Today, I share the essay that Julia wrote about her experience. Enjoy!

Truly Living

When I first signed up for Extra Hands for ALS, I thought it would be a nice way to spend free time, volunteering with real people and trying to make the world just a little better. I had no idea that the day I walked into 1847 Linwood Drive would forever change me. Extra Hands for ALS is a program through which patients with Amyotrophic Lateral Sclerosis (“ALS”) are connected with volunteers who help them accomplish things they no longer have the ability to do on their own. ALS (commonly known as “Lou Gehrig’s Disease”) is a heartbreaking and debilitating disease that slowly deteriorates a person’s motor functions yet leaves the brain untouched, in effect holding them prisoner in their degenerating body until they die. ALS is a terrible disease, both for those who have it and for those who must watch their loved one slowly die in front of them. Yet to die from ALS is relatively easy compared to living with it. It requires an amazing strength and bravery, and an acceptance that our time alive on Earth is not guaranteed. Although he knew that this disease was terrible in every way, my patient Bill Lichtig lived with it with an uncanny dignity and was able to indirectly use the disease to teach me amazing life lessons. And he has changed me forever.

The day I met him, Bill wore glasses, had a cane resting against his knee and two golden retrievers lying at his feet. He stood up to shake my hand in greeting although I could see it pained him to do so. This was my first glimpse of what I learned was his steadfast resolve to live despite his disease, an amazing bravery I hope to one day see in myself. Bill has left me, but he leaves me with resonating lessons about three things: love, life and laughter.

Bill was a lover, of people, of life, and of laughter. You cannot just teach someone about love, but you can show them. Bill showed me that you must let people love you, even when you do not want to. Bill’s wife, Kathie, was his primary caregiver. This meant that she was in charge of feeding him, among other things. Seeing Kathie fearlessly feed Bill through his feeding tube truly showed me love. She chatted with him about unimportant things while she did it, I guess in an attempt to show him it was not a big deal to her. Yet through that action I could feel the outpouring of true, deep love they felt for each other. Kathie could have had a nurse take care of Bill, but she did not; Bill could have told her he wanted a nurse so as to not inconvenience her, but he did not. Bill allowed Kathie to care for him because he loved her, and Kathie never stopped nursing Bill because she loves him. There is a song by a band I like, Death Cab for Cutie, who sings a song with the lyric: “Love is watching someone die.” When I first heard those words I instantly thought of Bill and Kathie, who have taught me more about love than I may ever learn the rest of my life.
Besides love, Bill also taught me about life. One day, before he could no longer comfortably chew them, Bill was enjoying his daily snack of Oreo cookies and he said to me: “Cookies fix anything.” While unfortunately cookies could not physically cure Bill, they symbolized a deeper meaning. Cookies were all the small things Bill did to enrich the last part of his life. Sitting outside in the sun, petting the dogs, even sniffing the air in the kitchen as I attempted yet another meal under his instruction. Bill showed me that focusing on small, positive things can help you ignore large negative ones—or at least keep them from ruining your day.

One day Bill, who liked to speed in his motorized chair, was enjoying wine through his feeding tube. He told me if a cop pulled him over he was fine because he could truthfully say: “Officer, no alcohol has touched my lips.” I know his mischievous humor kept him alive when he no longer had the physical strength. This alone proved to me the importance of laughter, and he made me laugh constantly. Once he could no longer speak himself, he used a computerized voice, although typing was tedious and frustrating for him. He maintained his dignity, even when others were not so understanding. For example, he was sometimes mistaken for a prank caller when using the telephone, but his strength to even recount these stories to me displayed an undaunted will to fight his disease. A coward would be embarrassed by such an event, but not Bill—by reliving the experience he was showing everyone he was still here, and still strong.

The most important lesson I learned from Bill came when he told me: “Yes, this isn’t an easy disease to live with. But there’s nothing I can do about it. I can either spend my days crying or laughing—and I choose to laugh.” This statement concisely sums up what I learned from Bill. I learned not to let small things, like forgetting an item on our grocery list or messing up our projects, ruin my day. I learned to see a small mistake as just that: a small bump in the road rather than the end of the world, as I used to do before I met Bill. He taught me that so much of life is mistakes. Who we are is based on how we deal with those mistakes and how we react in the life’s obstacles. We can cry or we can laugh, and it is always better to laugh.

Bill also taught me how to die. August 10, 2005.

Material things don't really matter

2009-05-25T21:52:00.000-07:00

I know, we've all heard it! But it's really interesting when you finally "get" it. I'm not great with my ability to totally recall bible verses, but I know there is a passage somewhere that goes something like "ashes to ashes, dust to dust, we shall all return to our maker". Frankly, I'm a 70's girl and think that the band Kansas got it right with "Dust in the Wind", one of my all time favorite songs to belt out in the car....but I digress.

Because, we had a year to spend together and say our goodbyes, Bill and I had the chance to talk about what he wanted, what his life would stand for, and how he wanted to die. At first I was pretty "creeped out" - no one rationally chooses to talk about death, the meaning of life and how you want to be remembered! Do you?? But once he convinced me that he was serious, I swallowed hard and agreed to just listen. Turns out, it took the full year, but it was one of the smartest things I ever did! For the record, it's not easy to have these conversations, but for me, I received the ultimate peace. I didn't have to guess or wonder what he wanted....I already knew.

My husband was a firefighter for 20+ years. He loved his job and was really good at it! He left the department and went to work for Sprint PCS. Again...he was really good at what he did. Up until the day he went on disability, he was actively working with emergency service providers to fine tune the response program for 911 calls from your cell phone in Northern California. Over the years, he touched (and saved) a lot of lives. But he often wondered if it was "enough".

Bill was part of a UCSF memory and aging study, conducted by Dr. Bruce Miller and his extraordinary research team. The sessions were informative and fun - something to look forward to. During one visit, because of the family history of ALS and FTLD, we were asked to consider "gifting" his brain and spinal cord to the research program. It would be autopsied and contribute to the ongoing research. After talking it over, Bill decided that if he never did anything else with his life, at least he could consciously contribute to the process of trying to find the key to ALS and FTLD. Turns out, for him, that would be enough!

On our next visit, we agreed to the donation and signed the necessary paperwork. We were all finished and as we were about to leave, the program manager, after thanking us profusely, asked "what would you like to do with the rest of the body?" eeeeeeeeeeeerrrrrrrrrhhhhhhhhh What?! Turns out, they really wanted JUST his brain and spinal cord. In true style, he quickly typed the following response on his laptop..."Well, I'm not gonna need it!". They looked at me and I (equally as quickly!) assured them that I did not want it! Lucky for us, the University has a Willed Body Program. It's awesome! We signed the additional paperwork and never looked back.

As the ALS progressed, we talked about everything and he even helped with the arrangements for his memorial service. His only request was that when he died, he wanted to make sure that his "never give up" silicon bracelet and his golden retriever, beanie baby went with him. It's a long story about the beanie baby, but suffice it to say, it was important! We ultimately had to leash the beanie baby to his wheelchair to make sure they were always together!

On August 10, 2005, Bill passed peacefully in his sleep. Emmy, the angel aide from hospice, arrived in the early morning to give him his last bath. After a quick discussion, it was decided that he didn't need any clothes - that a clean sheet would suffice for his final ride to the University. That was it! He came into the world with nothing and would leave in exactly the same way, with 2 small exceptions. Truly, material things do not matter in the final hour.

The rest of the hospice team arrived to help me through all of the final details. And finally the team from the University arrived, carefully and respectfully loaded him onto the gurney, covered him with a bright blue, stretchy cover and escorted him back to the university lab. For all that it was sad, the process was actually pretty wonderful. I had little to think about and I was comforted to know that he was in good hands, doing exactly what he wanted to do.

Later that evening, as my head finally hit the pillow, I had a chance to think about the day. I felt really good about the decision to donate, but...I had this random thought! And...from time to time, I reminisce and wonder about the student who opened the drawer to begin the autopsy. I can't help but wonder if they thought "hmmmm, naked guy with a bracelet and a beanie baby. I'll bet there's a good story here!"

In the end, it's not the material things that matter. I believe it's how you lived your life, thought of others and made people smile.

The New Road

2009-05-22T07:27:00.000-07:00

Starting over without your life partner is not easy. In fact, I am inclined to agree with what many say about ALS. It SUCKS!

The reality is, while he is never any farther from me than my own heartbeat, my best friend and life partner Bill will never again share my bed, tease me about my terrible joke telling skills, "handle" the bugs and rodents that occasionally show up or even send up his distinctive "meow" because I've wandered away from him in the grocery store and he can't find me. This, and oh so much more...I miss.

So...each and every day I have a choice. I can (attempt to) stay firmly rooted in the past, where it's familiar, where I would like to be. Where Bill and I were - together. I can stay in bed, under the covers, and let the world go on its merry way. I don't have to participate and you can't make me. (sound like a petulant 3 year old you know?!) I did in fact, choose this option in the first days and weeks following Bill's death. I can definitively tell you that it's dark and not particularly interesting under the covers!

So the only real option for me seems to be - put on my big girl knickers and a brave face, pack a snack and hit the new road. I've learned and come to appreciate, that if I am nothing else...I am resilient. I am not wired to live in the past....I live in the here and now. Unfortunately, I'm told that I make grieving look easy, or worse, that I didn't grieve at all?! For the record, I grieved along the way. Every day, some new bit of functionality was lost and Bill had to hand that off to me. Trust me, we both cried.

So the question is, how to keep the bravery going? Just as ALS has its own path with every patient, so the recovery path is different with every survivor. With Bill's passing, I knew that fundamentally I was different. But when I looked in the mirror, I saw the "same" me. I would get tripped up and start the crying all over again. And we all know what that looks like! After a good cry, you can't breathe, your eyes are red and swollen, your nose is runny and red from blowing, you have a raging headache and in general...look/feel like crap! Great!? How would I ever break the cycle?

For me, it was a change in haircolor. I will forever be grateful to my hairdresser, and good friend Alisa who mixed her magic and transformed me from blonde to the red I should have been born with. This one small change put me on the firm road to recovery. We did not get the red "right" the first time, but the change was transformative. Each time I looked in the mirror, I literally saw a new person. In time I began to think differently. I began to act differently and with each baby step, I got stronger and more confident in my new path. It's not always easy, but each day it gets easier and I have never looked back. Thank you Alisa...you are a genius!

SPECIAL NOTE: DO NOT TRY THIS ON YOUR OWN! Seriously. If you choose to make a significant change with your haircolor, go to a trained, certified colorist. Get recommendations and spend the money to have it done right.

SHARE THE CARE: Offering help

2009-05-21T11:25:00.000-07:00

Some time ago, I wrote a post entitled Ask for help / receive offers for help graciously. In it I wrote, "We are just not programmed to receive help. How often is it beat into our heads (from childhood!), “it is better to give than to receive”? Well, the truth is, somebody forgot to close the loop on this little axiom. If nobody receives, it makes it damn HARD to give!"

I had a conversation about a week ago with someone who agreed with my sentiment but shared a slightly different perspective. She said "I would love to have some help! I want help, I know I need help, but with everything I'm trying to cope with, I can't always articulate what I need. The truth for me is that when you ask me "what can I do to help you?", the offer is so vague, my brain goes into overload and I just can't answer!" Hmmmmm. We finished our conversation and went our separate ways.

A bit later in the day, I walked into a card store and was immediately greeted with "May I help you?", and the "how can I help" conversation came rushing back...in a flood. I've had extensive sales training over the years, and the #1 taboo in sales is to greet a customer with "may I help you?" It's too overwhelming and immediately invites the customer to put up his/her defenses. (All together now..."no thanks, I'm just looking!") In that instant, I understood what my companion was trying to say about offers of help.

The same way I've taught my team members over the years to greet customers with ANYTHING but "that sentence" (I've actually levied fines to retrain my forgetful team members!!!), I thought it would be helpful to share some specific alternatives to "How can I help?". This is a "starter set" to consider. Just remember the goal....narrow down the options for the patient/caregiver - so that you are much more likely to get a positive, definitive answer and everyone wins!

The photos in this post are of just a few of the many angels who inspired this post and came to my rescue....more than once!

I make a mean tuna cassarole and my family raves about my spaghetti. Which does your family prefer? (Obviously, insert your personal specialties!!!)

I am free to run the "kid shuttle" on Monday or Thursday. Which would be better for you?

I have an hour on Saturday to pull weeds or mow the lawn. Which chore would you like to delegate?

I can help you with household chores for about an hour - you know change beds, fold laundry, etc. How about Tuesday evening around 7 or Wednesday after 3?

I can take the kids Friday or Saturday night for a sleepover, which works best for you?

You get the idea! PLEASE add to this list by posting your suggestions! Another alternative: Don't ask - just DO!

Most of these suggestions require little or no planning and best of all, you can do them whenever YOU have the time, energy and inclination! Please keep your friend's temperment and your relationship in mind!! A word of caution...in the interest of fair disclosure: following any of these next suggestions is potentially risky! However, I am reasonably certain that even the most die-hard indivualists would appreciate it if you were to:

Take your kids, a couple of rakes and some big trash bags and just rake the leaves in your friend's yard. or...Trim the hedges. or....Mow the lawn. or...Deadhead/fertilize the roses. Other???

Shovel the driveway

Safely, with a buddy, clear the gutters. or...Wash the outside windows. or...Wash a car left in the driveway.

Your imagination is the only limit to builiding your Mitzvah list. Let me know how it goes!

Life is like needlepoint...thoughts on perspective

2009-05-21T11:08:00.000-07:00

My mom's mom, my "Grammy" Jean, was an artist. She (front lower right in the yellow shirt) doesn't look like it here, but in her day, she was an accomplished painter, seamstress, sculptor, knitter and so much more. She also created beautiful, large scale tapestries (think love seats and major wall installations!) in needlepoint. The canvas on the right side of the photo is her interpretation of The Three Wise Men. She often said that all of her brains were located in her fingers! I don't think that's exactly true, but she was truly gifted!

When I was young, my gramdmother would patiently try and teach me the fine art of needlepoint. As you might guess, the operative word in the previous sentence is "try"! I've never gotten the hang of it! While I'm not great with needlepoint, I am very blessed to have inherited not only her name, but some of her creative talent. I feel very close to her whenever I am in my studio making jewelry.

Anyway....a few years ago, a co-worker gave me a new appreciation for needlepoint! As a metaphor to appreciate the beauty that lies in the trials of life. Cindy is a very devout Christian woman with her own special ministry. To help people understand the big picture, she frames her conversations in the context of needlework. Her theory...when you are the artist, your skill and confidence determine how you approach your project.

Beginners head to the local craft/fabric store and select a kit with an appealing design. The canvas is pre-printed and the yarns, colors, design and very often the tools are all neatly tucked into the package. Assuming the artist has even a modest amount of talent and patience, the finished project is pretty well assured and generally looks beautiful. However, if you've ever looked at the back side of a beginner project, you know that the view is less than beautiful. Knots, frayed threads, crossovers, slipped stitches, and more decorate the back of the canvas. Which is why beginners will inevitably head to the local frame shop and have the framer stick a piece of cardboard over the back....to cover it up!

On the other hand, if the artist is accomplished and confident, a pre-printed design is rarely, if ever selected. The artist gets an idea and then selects a blank canvas, the yarns and embellishments which suit the mood. Very often, timing and the yarns dictate the final design and I have seen my grandmother change her mind in the middle of a project! Only the most confident can do that and have it turn out to be anything in the end!! But even the most accomplished needlework artist still has her (his...my Great Uncle Ken did exquisite counted cross stitch!) knots, frayed threads and less than perfect stitches. Instead of leaving and covering up the imperfections, they will patiently work until the back is almost as beautiful as the front. There are still knots, but they are usually small and work into the grand design. The artist may even share the story of how the knot came to be and how she worked through it.

I believe in God. And this will sound presumptive, but I'm pretty sure God took needlepoint lessons from my grandmother! Here's the tie-in. We - as humans - are threads in one really big, gigantic tapestry and God is an accomplished and very confident artist. God does not need a pre-printed design, He ultimately knows the design for each of our lives. I, like Cindy believe that He knows exactly the colors (situations) and threads (people) to be used in the design for each of our lives.

Seriously....take a minute to think about this! He knows the joys and the sadness, the circumstances, the pain, the reactions....everything. Each and every person you come into contact with is a thread in your tapestry. Some are around briefly and add an accent. Some are in your life for a while, fall away and come back to fill in another part of the canvas. Others are in your life longer and create part of the focal design. Still others form the borders or add special embellishments. Each circumstance brings you into contact with more people (threads) for your special design. And you....are a thread in the lives of everyone you know or have come in contact with. (Kinda takes your breath away there for a minute!?)

As we make choices, we potentially change the design. Yet He works with us to weave an incredibly beautiful, rich, colorful, tapestry that we each call a life. He directs the path, and is responsible for some of the knots and slipped stitches. But I believe that He is a patient artist and works to minimize the impact. But there are times, very often through our own choices and actions, that we are the ones creating the knots and loose stitches of our lives. We can work patiently to work through the knots or we can become frustrated and tie them ever tighter. We can turn to Him and count on his perspective to help ease the bumps and crossovers. We can learn to appreciate the beauty of the process or choose to look for something to cover up what we don't want seen.

To Him, it is all part of the grand design and it is completely beautiful....knots and all! To us...maybe not so much! I've come to believe the difference is perspective. He is always looking at the front of the canvas and we are looking at the back! What if we changed our perspective?

Memorial Day - a tribute to the freedom fighters

2009-05-21T10:49:00.000-07:00

General Order Number 11 of the Grand Army of the Republic was the document that established Memorial Day, or Decoration Day as it has been also called, as a nationwide observance. It is appropriate to honor our military heros and their families any time, as demonstrated by the ALS Association during the recent ceremony at the Tomb of the Unknowns in Arlington National Cemetary.
With so many of our military veterans, returned safely to loved ones, only to find themselves under attack from ALS, it is fitting to consider the following passage in the orignal General Order: "...Let us in this solemn presence renew our pledges to aid and assist those whom they have left among us, a sacred charge upon a nations gratitude the soldiers and sailors widow and orphan."

Please take a few minutes this weekend to recognize and thank (even silently) the men and women who have given their lives to defend and preserve our way of life. Better yet, take action and write to your representatives in Washington, DC. Ask them to support the 2009 Public Policy priorities set by ALSA National. Visit the Advocacy Action Center to learn more.

To read the full text of the General Order...

Peace!

CA Income Tax Check-off initiative update

2009-05-20T10:33:00.000-07:00

As part of the stack of bills introduced and signed into law by Governor Schwarzenegger late last year, a tax credit check-off box benefiting ALS research was added to the 2008 CA State income tax return. Initially, the bill was not scheduled to go into effect until the 2009 tax year. However, thanks to some very quick action taken by the Franchise Tax Board, CA taxpayers were able to make a difference, one year early!

The 896 early birds who filed in January 2009 designated $8,630 toward ALS research. Avg donation per filer was $9.63

Through March, 8000+ taxpayers had designated $86,154 to the fund. The average donation thru March was $10.76 per return.

April filers were even more generous!! 6240 Californians checked the ALS box and an additional $76,931 was directed to the research fund. Avg. donation on the April returns: $12.33!

So....the totals for the 2008 tax season are: 14,248 returns, with an average donation of $11.45 per return, for a grand total of $163,085 designated for research. Hard times always seem to bring out the best in people, and it’s amazing (and gratifying!) to see how quickly it all adds up!

You can check our progress, by clicking the following link to the contribution report: http://www.ftb.ca.gov/individuals/vcfsr/reports/023.pdf

PS: If you filed an extension...please remember to "check the ALS box" when you file your return.

Advocacy in action...

2009-05-20T10:09:00.000-07:00

Anyone following this blog has probably figured out that I am passionate about advocacy on behalf of ALS patients and families! I truly believe it is imperative for us to gather as a community and raise our collective voices. We must be heard. Legislators at all levels of government must hear and understand the devestation ALS wreaks on individuals, families AND our communities.

2 weeks ago, 1000+ ALS patients, family members, friends and numerous professionals gathered in Washington, DC for the Annual ALS Conference and Advocacy Day on Capitol Hill. It is a powerful and exlihirating event. What I have learned however is that Advocacy is a year round job! As constituants, we must build relationships with our legislators. It is not easy, but it's not as tough as being an ALS patient!

For several months, I've been writing a quarterly newsletter discussing various topics relevant to California ALS patients, more specifically, how to use the tools that are currently available to reach and inform legislators and the media. The newsletter has been limited to advocates in Northern California...so the natural progression is to move the newsletter to BLOG format!

Please check back regularly for news/tools you can use to bring ALS to the attention of your own elected officials. Use these tools to learn who represents you in Washington, in your state and in your local community. Get to know their staffers in the local office. Share your story. Help them understand ALS. Together....we can (and will!) make a difference.

Join Our Virtual Advocacy Day: Support the ALS Advocates on the ground in Washington DC

2009-05-11T09:48:00.000-07:00

Even if you can't be at this week's Advocacy Conference in Washington, you can still make a difference! Today, we need every ALS Advocate who is not in Washington DC for the Advocacy Conference to contact their U.S. Senators and urge them to support continued funding for the ALS Research Program (ALSRP) at the Department of Defense (DOD).

Specifically, ask them to sign the "Casey-Snowe" ALS Dear Colleague letter, which is being circulated in the Senate this week. The letter calls on Congress to provide $10 million in funding to continue the ALSRP, the only ALS-specific research program at the DOD. Continued funding for this program also is critical because, unlike many other research programs that focus on basic science, the ALSRP is specifically designed to develop new treatments for ALS. So please contact your Senators TODAY.

The nearly 1,000 advocates from across the country who are attending the Advocacy Conference will put a face on this disease (and your message) when they meet with Members of Congress on Tuesday, May 12. With your help, we can send a loud and clear message to Congress. So please contact your Senators TODAY. And tell your friends, family and colleagues to do the same. A sample letter you can send directly to your Senators is available in the Advocacy Action Center of the ALSA National website: http://capwiz.com/alsa/home/.

If you don't know the names of your Senators, don't worry. The Advocacy Action Center will identify them for you and allow you to send a message to them directly from the site. A copy of the Dear Colleague letter being circulated by Senators Bob Casey (D-PA) and Olympia Snowe (R-ME) is available by clicking here .

Thank you! Through advocacy, we are creating the roadmap that will lead to a cure!

Photo: Patient Lorri Coppola, 2007 Advocate, Lost her battle with ALS in 2008.

New Clinical Trial @ Emory University for Familial ALS

2009-05-06T12:49:00.000-07:00

Even though Bill has been gone for several years, I continue to receive information regarding clinical trials. In the past, I've discarded the notices....I don't need them. However, I thought it might be useful to post the information here.

Department of Neurology @ Emory University School of Medicine

"...We will be starting a clinical trial of a drug called arimoclomol (pronounced ari-mok-low-mole) for people with rapidly progressive forms of ALS caused by mutations in the SOD1 gene. " "If the genetic cause of ALS in your family is unknown, then we'd like to encourage you to contact us so that we can find out if the SOD1 gene is the cause. Please contact Cathy Raiser, study coordinator at craiser@emory.edu or (404) 712-8578." "If you have ALS and we can establish that a change in the SOD1 gene is the cause of ALS in your family, then you may be eligible to participate in this clinical trial. "

Michael Benatar MBChB,DPhil
Assistant Professor of Neurology and Epidemiology
Emory University

There are a number of links to clinical trial sites. Here are a few I've found. Please feel free to add to the list.
http://www.alsa.org/patient/drug.cfm
http://alsindependence.com/ALS_Clinical_Trials.htm
http://alstrials.ucsd.edu/
http://www.als.net/research/studies/publishedClinicalTrialList.asp

Advocacy Toolkit

2009-05-04T11:45:00.000-07:00

In a previous post, I presented an overview of the tools available on the Public Policy Page of the National ALSA website. This post is designed to make you more familiar with the options on the Elected Officials tab. Practice using the tools by sending a thank you letter to your State Legislators for their work to pass the CA State Income Tax Check-off and ALS Registry bills this year! Just give a brief overview of your story and why the passage of these bills is important to you. Helpful hint: It’s easy to compose a letter in your normal word processing program (i.e. Microsoft WORD) and then use the Copy/Paste function to add the text to the online/web form.

Step by Step

Before you start, you will need your Zip +4 code. Launch your web browser and access the Public Policy Advocacy Action Center using the link: http://capwiz.com/alsa/home

Click the Elected Officials tab.

Enter your Zip +4 Code in the search criteria boxes. Click the radio button marked STATE and click GO. The system will present a list of the elected officials who represent you.

Click the name link and the system will present an overview of the selected legislator with links to their official web page.

Click the View button located next to the Issues & Legislation section and the system will display a number of options, including a link to tips & protocol when writing to legislators.

Alternatively, you can also use the tools provided by the State of California to locate your local legislator. Click the link: http://www.leginfo.ca.gov/cgi-bin/memberinfo

Enter your zip +4 in the search box and click search. The system will provide a list of your State representatives.

Click the name link to be taken to the official web page for each legislator.

Click the Contact Me link.

Complete the information requested.

Click Submit.

Be informed – subscribe to e-news from your legislator. Learn about town hall meetings, new legislation, community events and more. Visit their website and sign up today.

NEW…VA Benefits Online Resource

2009-05-04T11:39:00.000-07:00

Newly launched, ALSA National has created a new section on their website, targeted specifically to our military veterans and their surviving spouses. Designed to help veterans understand and apply for the benefits they are entitled to, the site includes important resources for vets with ALS, their families and survivors, such as answers to frequently asked questions about the new VA regulations for ALS and a link to our Roll Call of Veterans. Please share this information and encourage all vets to join the Roll Call of Veterans. Non-veterans also can become ALS Advocates via the site and receive the tools and information they need to help us fight for veterans and all people with ALS.

--Veterans Page: http://www.alsa.org/policy/veterans.cfm
--Benefit Information & Eligibility: http://www.alsa.org/policy/article.cfm?id=1358
--Applying for VA benefits: http://www.alsa.org/policy/article.cfm?id=1357

You’ve signed up to be an advocate…now what?!

2009-05-04T11:17:00.001-07:00

You went to the Public Policy Advocacy Action Center –http://capwiz.com/alsa/home/ and registered with ALSA National to become an ALS Advocate. THANK YOU! You have taken the first step to making a difference for patients and families living with ALS. The next step is to get familiar with the Public Policy Page and some of the great tools available to us on the ALSA.org website. Here is a quick overview of the page – I’ll cover individual tools in future posts.

There is much more content, but this is the “meat” of the home page.

The Elected Officials tab allow you to find your elected officials, including members of Congress, governors, state legislators, local officials, and more. Enter your Zip +4 Code, select your search criteria and click GO.

The Issues & Legislation tab allows you to learn about key legislative priorities and send email messages to your legislators.

The Media Guide tab provides a comprehensive listing of the newspapers, TV stations, and other media organizations which cover your zip code.

The resulting media list allows you to send an email message directly to the key contact at up to 5 media organizations. This is just a partial listing for the 94547 (my hometown) zip code!

I’ve found the site to be very user friendly. So…logon and take a look around!

ADVOCACY 101

2009-05-04T10:21:00.000-07:00

What is an advocate? (Webster’s) One that supports or promotes the interests of another

What is ALS Advocacy? The support and promotion of ALS related interests, more specifically research, health & long-term care and caregiver support, at all levels (National, State, Local) of elected government. ALSA advocates work to effectively lobby Congress, the White House, and related national organizations, as well as state and federal agencies for funding and support of programs which will benefit PALS and their families. The true strength of the advocacy network is the dedication of the many individuals affected in some way by ALS. Individuals who have made the decision to make a difference today, so that the future can be brighter for PALS and their families.

Why is it important? Joining together to raise our voices on behalf of PALS, we have been able to accomplish the following:

Presumptive Disability (and accompanying benefits) for Veterans
Passage of the ALS Registry Bill
Passage of the 24-month Medicare waiver for ALS patients and the presumptive disability ruling from the Social Security Administration.
Increased federal funding for ALS research at the NIH
Federal funding for ALS research through the Department of Defense

Who can be an advocate? Anyone with a commitment to help current and future generations affected by this horrific disease. Anyone willing to raise their voice or write a letter to an elected official. Anyone willing to make a difference. You!

As an advocate, what do you do?
ADVOC[ATE*]

Join in (or start !) a social networking discussion
Join the “Advocates for ALS” group on Facebook
Sign up: http://www.facebook.com/home.php?ref=home#/group.php?gid=46567667530&ref=ts
Become a Greater Bay Area Chapter Facebook FAN
Sign up: http://www.facebook.com/home.php#/pages/San-Francisco-CA/ALS-Association-Greater-Bay-Area-Chapter/7265231215?ref=ts
Join the “ALS Association-Greater Bay Area Chapter” group on LinkedIn
Sign up: http://www.linkedin.com/groups?gid=1723587
Join the ALSA advocacy team.
Sign up at http://capwiz.com/alsa/mlm/signup/

PARTICIP[ATE*]

http://web.alsa.org/site/PageServer?pagename=WLK_BP_CA_eventlist
-Use the online tools to raise money for research and patient programs. It’s easy and fun!

Sign up, don your padded shorts and ride your bike to Defeat ALS.
-Pick your ride: http://www.ridetodefeatals.com/Pick_your_ride.html
-Use the online tools to raise money for research and patient programs.

Sign up and volunteer for one of the many chapter events/projects.
-Register today: http://webba.alsa.org/site/PageServer?pagename=BA_volunteer
-There are LOTS of opportunities! We can find a job to suit your skills and time commitment.

EDUC[ATE*]

Learn the answers to FAQs
-Wikipedia:

http://en.wikipedia.org/wiki/Amyotrophic_lateral_sclerosis
-ALSA: http://www.alsa.org/als/what.cfm?CFID=3127178&CFTOKEN=6299aa0f7dad5592-E96C37F7-188B-2E62-80C54B5B86E267D5
-Whatisals.com: http://www.whatisals.com/

Speak up and speak out.
-Educate your friends, family, co-workers, everyone in your personal community. Get them involved!

POPUL[ATE*]

Update your social networking sites (i.e. Facebook, LinkedIn, Twitter) on a regular basis.
-Share links to research, interviews, stories, events, clinical trials
-Post encouraging messages
Promote local events to raise ALS awareness by participating and sending event invites to your friends.

[*ATE] – ALS…Together it Ends

Kids and ALS

2009-03-16T20:20:00.001-07:00

I think sometimes we work too hard to shield children from the difficult circumstances of life. I don't personally think it's right to frighten children by initiating conversations they aren't curious about, or overwhelming them with so much information they are in tears of confusion. But I think we do them a disservice when we hide or whitewash the natural order of life.

During Bill's illness, the children in our neighborhood ranged in age from 3 to 18 with the majority falling between 8 and 13. Initially I was pretty nervous about answering the question "what's wrong with Mr. Bill?" Bill, God bless him, set me straight. "It's just like talking to adults, only just a little different. You need to listen more carefully, answer only the question they ask and use simple words". OK....great! As usual, he was right! Here's an example:

Q: Why is Mr. Bill in a wheelchair? A: His legs don't work so well anymore.

Q: Why? A: Because his brain can't talk to his legs to make them move.

Q: Does it hurt? A: Nope!

Q: Will he get better/walk again? A: No

Q: Can I look at the laptop? A: Sure!

Q: What's he saying? A: Why don't you ask him. He can hear/understand you and he'll answer any question you ask!

Bill's laptop or "talkie" as we came to call it, was an endless source of fascination and information for the neighbor kids and their parents. In my experience, kids understand a lot more than we give them credit for and are very quick to adapt to changing circumstances, generally without intervention from adults! The kids naturally adjusted to the wheelchair and to Bill's funny, computer generated voice. It was the most natural thing in the world after we explained the basics. I will always be grateful to whatisals.com for the kid-friendly explanation posted on their website.

The kids figured out a rotating schedule among themselves to help me walk the dogs. Sometimes they would invite Bill to "walk" with them so they could ask their questions, knowing that Bill would answer honestly. I would often hear laughter, because that was his style and because a computerized voice is naturally funny!

Sometimes we would lose track of time and we'd have parents knocking on our door to collect their kids for the evening. In the early days, they would be aghast at the questions asked (you know how direct children can be!) and try to "shush" the kids. Bill would quickly re-assure the children that he would answer the question, inform the parents that there were no issues and then set about to patiently and carefully answer all of their questions. He always answered honestly and in an age-appropriate manner. It was truly a wonder to watch.

One of my fondest memories is the day he actually died. It had been a full day and I had dinner with friends in Orinda. I came home and parked the van in the driveway. Most of the kids were out playing, enjoying the freedom of late night play that only comes in August when there is no school. They all ran to the driveway and when the ramp didn't drop, the older kids instinctively knew he was gone. Zack...a lively and curious 6 year old asked the question on everyone's lips...
Z: "Hey....where's Mr. Bill?"
K: "Well Zack, Mr. Bill is in heaven." (I knew I had a choice to tell the truth or paint a story. I chose the truth and will always be glad I did.)
Z: "Heaven....all dogs go to heaven" (long pause as he looked around at the older kids starting to tear up) "That was a really sad movie"
K: "Zack...you are so right!"
Other kids: "Mrs. L., can we come in?"
K: "Sure, but you need to tell your folks where you are"

And that was that. About 10 minutes later, many of the neighbors came back to the house with their children to pay their respects and ease into their grief by reminiscing. As Zack's older sister Michaela came into the house, she spotted Bill's empty wheelchair, and without any hesitation, went to the chair and said her goodbyes to Bill by gently kissing the small bunch of silk daffodils anchored to the back. I'm sure she had no idea I was an observer to this fleeting, selfless, authentic gesture, but I will always remember her gentle manner and my gut reaction of "kids "get it" if we just give them a chance!"

Laughter is good medicine

2009-02-26T20:40:00.000-08:00

One of the more interesting symptoms of bulbar onset ALS is excessive/uncontrolled laughter and crying. We used to joke that the bouts of laughing and crying were kind of like the weather. You just need to be a little patient and the storm will pass.

I remember one particular incident where something got Bill laughing and then he couldn't stop. He was standing at the kitchen sink and I watched helplessly as he just "slid" down the cabinets to land in a pool of laughter on the floor. Fortunately, at least on this occasion, he didn't hurt himself! I jumped up and got behind him, to lift him safely as he'd carefully taught all of his caregivers. Only...his legs were not in a cooperative mood. I'd get him about half way to standing and he'd start laughing again, melting any bit of strength in his legs. After 3 attempts, I realized that until the lauughing passed, we didn't have a prayer of getting him vertical again.

So...we managed to get him propped up in a corner, leaning against the cupboards. I grabbed a glass of wine for each of us and pulled up a seat on the floor right beside him. You can get a very interesting perspective on life and your housekeeping skills from this vantage point! The dogs must have thought we'd lost it, but decided to join us as well. What a site! We enjoyed the wine and talked about a lot of different things that night. The laughter ran its course in about 30 minutes and once he was back in control, we were able to get him safely standing again. We were back to "business as usual". I've often joked that my life is "The Truman Show" and this was definitely one of the funnier episodes!

Lessons learned:
1) Life is about falling....Living is about getting back up!
2) Laughter is good. Too much laughter is not so good.
3) Take the time to laugh and enjoy the moment...don't fight it - join it!
4) Hire a housekeeper!

Join an ALSA sponsored Support Group

2009-02-23T22:00:00.000-08:00

I'm a huge fan of the ALSA support groups! They are a lifeline, when you receive an ALS diagnosis and think you are about to snap off the earth. That lifeline extends throughout the progression of the disease and then supports the grieving process.

Each group is slightly different, but the basics are the same. Each regional group meets periodically (usually once a month) and is facilitated by a volunteer, generally a licensed social worker. Patients, surviving spouses/partners, caregivers, family members and friends share their journey with ALS. It's a safe place to ask all of the "dumb" questions, find out about current research and clinical trials, share the more pragmatic aspects of dealing with the disease, learn from various experts (communication devices, construction, how to give/receive a sponge bath, etc.) and so much more. For me...it was (and still is) a place to feel normal and with patients in various stages of the disease and different progression, it's much easier to get a feel for the bigger picture.

To find a support group near you, check the National ALSA website.

THE PROJECT GIFT BOX - Organizing yourself and friends to help with caregiving.

2009-02-22T17:31:00.001-08:00

Asking for help is a very difficult task. I'm not certain why, but I suspect it is because we, as Americans, are such rugged individualists....we just don't need any help. As mentioned in previous postings, I am a true believer that it takes a village to care for an ALS patient. I was discussing this with some friends recently and came up with a possible solution - a way to turn the "gift" of time and service into something that we can intellectually accept with grace. When you think about it, if someone you cared about took the time to wrap up a small gift and gave it to you, you wouldn't turn it down. You would thank them immediately, unwrap it, oohh and aahh, and then probably send a thank you note. Here are suggestions for creating your own "Project Gift Box".

Find a box with a lid

Go all out and decorate it to your hearts desire! Wrap the box and the lid separately.

Find 4 - 5 different colors of paper - Medium sized PostIt squares are the perfect size!

Colors correspond the the amount of time which can be donated for any given offer (i.e. 15 - 30 min., 30 - 60 min., 1 -2 hours, 3+ hours)

Tape one slip of each color with the time allotment to the inside of the lid (to help you remember!)

Think about the projects around your household that can be shared/delegated (see suggestions below)

Jot each project onto a colored slip of paper and add it to the decorated box.

When someone asks "What can I do to help you?", ask them how much time they have to "gift you" and then ask them to pull out a colored slip from your gift box.

There are chores that only you can do. But the list of chores to be done (and it doesn't really matter by whom!) is endless and limited only by your imagination and willingness to let your friends and family help you. Trust me...friends will truly be grateful for the opportunity to help with your caregiving responsibilities. Here are some distinct project ideas to get you started. Share your ideas and successes by responding to this post!

change the bed linens

fold clean laundry

assemble a grocery list (look in the cupboards and learn the specific brands you prefer)

go grocery shopping

put away groceries

pull weeds

read to a patient or a restless toddler

help with homework

walk the dog(s)

clean the catbox, hamster cage, rabbit hutch, bird cage, goldfish bowl, etc.

empty the diswasher

clean the toilet(s)

mow the lawn

take the car to the carwash

follow you to the dealership/repair shop for auto servicing

drop off a bank deposit

plant flowers/veggies

clean the pool

run the vacuumn

rake leaves

clean gutters

carpool kids to school, soccer, dance lessons, etc.

collect the trash/recycling

pick up a prescription, dry cleaning

return library books, video rentals

shovel snow

hose off window screens

Get Strong Today!

2008-06-22T08:11:00.000-07:00

Do not wait as long as I did!!! Find 45 minutes a day and get to Curves® if you are a woman or the YMCA if you are a man. There are lots of things you can do at home, but it is my opinion that you need a program, the equipment and the coaching to give you muscle strength quickly. Both Curves and the Y fit the bill. If your PALS is still reasonably self-sufficient (they can manage by themselves for 45 -60 minutes) get signed up and get going - every day. If necessary, get someone to stay with them for an hour. Whatever it takes...you will absolutely, positively need muscle strength to manage your PALS as they lose muscle capability. When you say "I've got you....don't worry"...make sure you've got a muscle (or three) to back it up!

Ask for help / receive offers for help graciously.

2008-06-22T07:41:00.000-07:00

We are not programmed to receive help. How often is it beat into our heads (from childhood!), “it is better to give than to receive”? Well, the truth is, somebody forgot to close the loop on this little axiom. If nobody receives, it makes it damn HARD to give!

Now is the time to turn to friends and family – you have to let them in - to share the load. If you can figure this out, the road will be a lot less bumpy and considerably more meaningful for you and your circle of loved ones.

I personally believe it is particularly critical while your PALS is still mobile to get people to take him/her out, for a period of time so that your PALS is safe and entertained. They get a change of scenery, you get some time to yourself, even if it's to take care of chores and (bonus!) you have something different to talk about besides ALS! This will get harder as your PALS loses mobility, but it's not impossible. You may have to do some negotiating as the disease advances. It helps to have friends who have been caregivers!

I always had a backpack stocked (think diaper bag!) and several friends learned how to feed and water him so that he could remain independent and interesting. Bill was really great about going out for up to 3 hours, which was about the maximum capacity of his bladder. He didn't want anyone to help him transfer in the bathroom but me. Again...I totally realize now how fortunate I was that he was willing to let people be that intimate with him!

Here are some less intimate options for when someone says “I want to help, what can I do?”

Ask them to cook a meal and make enough for left-overs.
Have them talk to you as they unload your dishwasher so that you can sit still for 5 minutes and watch them do it.
Have them arrange for a neighborhood rotation to rake leaves, mow the lawn, trim the roses, etc. Have your PALS supervise the effort.
Help you (organize a weekly blitz to) change the beds, vacuum, mop, clean the toilets, etc.
Hand them a shopping list (be specific about brands you prefer!) and your debit card and ask them to go to the grocery store. Even better, take your PALS with them so he/she can help with brand decisions! If your PALS is not in a motorized wheelchair, they can use the motorized carts in the store. They don't have to hurry!!!! Use the time to get a shower, meditate or read.
Sit still in a chair, on your hands if necessary, and coach them on where things go in the pantry when they get back with the groceries.
Hand them your bag of dry cleaning and ask them to take care of it the next time they run their errands.
Ask them to pick up a box of haircolor and a bottle of wine. Set your PALS up with a 90 minute movie and ask them to help you color your hair!
If you go to the grocery store, and the courtesy clerk asks "would you like help", the only answer is "yes please"!!!!
Ask the kids in the neighborhood to help decorate your porch for the holidays. It may not be perfect, but it will get done, they'll have a ball and who knows...you might like it better. I often had Bill "supervise" these projects. The kids loved it!
Consider doing you holiday shopping online and then having friends help you wrap everything. Again...send your PALS shopping with friends and a list.

There are millions of little opportunities! Be creative and allow your friends the ultimate gift of helping you. You aren't a burden! Please consider this...you would be sorely offended if you offered help and they turned you down, if the circumstances were reversed.

Family...a new definition

2008-06-22T07:22:00.000-07:00

Family isn’t just about biology. Family and friends come in all sizes, shapes, colors, skill sets, dispositions, geographical locations, and more. To list my “family”, would require a very long list! I thank my lucky stars for all of the everyday angels God has sent my way….you all know who you are!!! Please know that you have my humblest thanks for all that you have done for Bill and me, and continue to do for many others…every day. I would like to publicy thank the ALS clinic and the Memory & Aging teams at UCSF for their friendship, skill and their (collective!) outstanding bedside manner. The Kaiser Permanente angels include Will North, David Fields, Carolyn & Fran, Danijela, Jolene, Anita and Emmy.

It pays to get your legal/financial house in order and the peace of mind is worth every dime you invest. Thank you Steven & Joelle, and Henry & Jean.

Some days it’s an effort to get out of bed, put one foot in front of the other and just get on with the business of “getting on”. Terri, Janey, Phil, Chris, Teri, Tom, Patti, Sherri, Diane, Howard, Flo, Michelle, Tom, Nancy, Matt, and Julia are just a few of the angels who daily came to lift us up and carry us through the day.

If you’re lucky, you have friends who just seem to know what you need, when you need it and aren’t afraid to step in when it’s not so easy to do just that. I have been truly blessed by your friendship, humor and grace.

Aftermarket add-ons for your wheelchair - The Horn

2008-05-15T08:32:00.000-07:00

During the final six months of Bill’s life, his brother Howard, his wife Flo, Bill and I spent a good deal of time commuting between Port Orford, OR and Concord, CA. On one trip to Langlois Mountain to visit the Sr. Lichtigs, Bill complained that drivers couldn’t see him and he often felt unsafe when he was out and about on city streets in his wheelchair. He felt that he needed a horn that could be heard - the "piece of crap that came with the chair" just wasn't cutting it! I will share with you that Howard and Bill shared a distinct glint in the eyes whenever either of them had a "great idea". Some have called in mischevious...I preferred to think of it as trouble - with a capital T! On this particular day it was Howard's turn to have "the glint". Four of us piled into the van and headed to the Radio Shack in Bandon. The result (I’m sure you know where this is going!):

12 volt battery operated siren horn - $25 on debit MasterCard
Assorted wires, wire ties, cabling, duct tape and a pile of AA batteries - $ 34 on debit MasterCard
The ability to scare the living daylights out of your wife, your dogs and any drivers who dare to ignore you – priceless!

A few months later, Bill decided that the horn still wasn’t quite enough, so he and Howard, in a tequila/scotch inspired brainstorming session, determined that "launchable" rockets were in order. You know...like Top Gun. Howard headed back to Port Orford, enlisted the assistance of the local cub scout troop (he was a pack master) and returned to California a few weeks later with some very lifelike looking rockets – minus the gun powder - which were promptly mounted to the underside of the laptop tray on the wheelchair. Success!

The "boys" spent the remainder of Bill’s life trying to figure out how to actually launch the rockets without blowing up Bill, the chair or the surrounding neighborhood! Given enough time, I fear they may have succeeded. Thank goodness...the world will never know!

ALS is not a license for either of you (but especially the patient!) to be a jerk.

2008-05-15T08:29:00.000-07:00

Treat each other with care. This is an incredibly scary time for both of you. Early on, when Bill fell, my initial reaction was fear and I would yell at him - "didn't he know that (x) would cause him to fall? What in the world was he thinking?!" He finally had the courage to say to me - after he'd fallen and cracked the tile soap dish with his head (it's a great story!) - "I didn't start out to fall, it's not my intention to scare you, but you can't just start out by yelling at me!"

We both shed a lot of tears that evening, but I quickly adopted a personal rule and in spite of my terror, I didn't approach him with anger. More than once, I'd laugh, sit down beside him, check for blood/broken parts, make a smartass comment about the situation ('hmmm...lucky for us you're in the advanced ballet class now!" or "3rd grade gymnastics has really come in handy"), take a breath and then ask if he had any thoughts on how to get him upright/safe again. He usually did...and we managed pretty well! I treasure those moments the most today...my eyeballs are leaking as I type!

Learn to let go....

2008-05-15T08:21:00.000-07:00

This one is really HARD. I am a board certified control freak! I wanted (needed!) to have everything be normal. Please try not be as stubborn as I was on this point!! I swear to you on my life...nothing is going to be "normal" anymore. And realistically, now that I'm on the "other side" of ALS, I've learned that "normal" is pretty subjective! I promise you...the only normal, is what really "is", here and now, this very minute, cold hard facts. While completely counter-intuitive, by letting go and living totally in the present (do what you can, with what you have right now and worry about the rest another time) you actually gain control. Trust me...I'm still working on this, two and a half years later....but I've almost got it!

Anti-depressants are truly God's gift to us!

2008-05-15T08:16:00.000-07:00

Get connected to a mental health professional...NOW! I was very fortunate. On his own, Bill applied to Kaiser mental health very soon after the diagnosis. We got a fabulous psychologist - Sherry Batterson - I still keep in touch! She was a safe place for him to vent about what he was losing and how he was feeling. She gave him very concrete ideas on what he could do to manage his circumstances. Toward the end, she saw us both, primarily because I literally became his voice. She did a great job keeping us straight and helping us focus on what mattered most. I can't promise you a Sherry, but still strongly encourage both of you to find a psychologist.

Check with your PALS' psychologist, primary care physician or clinic doc for a prescription for some type of anti-depressent. In my opinion...depression is a very normal part of ALS and the symptoms need to/can be managed. I believe that the docs from the ALS specialized clinics agree.

I would also strongly urge you to consider (and ASK for) them as well! I didn't think I needed them, but my gynocologist (during a routine girlie checkup) prescribed them for me. I started taking a low dose (20mg) of Prozac about 6-8 weeks after we got the diagnosis, got up to 40 mg about 6 months in and then took myself off about 8 months after Bill died. The meds give you the "headroom" to to deal with everything that's happening. I truly believe that the meds allowed me to keep my head and my sanity as we dealt with the freight-train pace of Bill's progression. Just so you know...Prozac has a 6-8 week "ramp-up" time, so sooner is better than later!

You don't have a lot more time together...

2008-05-15T08:08:00.000-07:00

The good news is that you know that! Make the choice to use whatever time you have wisely!!! I will always be grateful to our therapist Sherry Batterson for the lessons and direction she shared with us early on. They are:

Say what you need to say.
Do what you need to do.
See who you need to see.
Enjoy every minute that you have together.

You don't have any extra time to pussyfoot around. You can be blunt or direct without being mean or mean spirited. This means that you have to get off the eggshells and tell your PALS that you're scared, angry, overwhelmed, whatever. You must also hear the same from them. Give yourselves permission to take time out if necessary and then go back in to talk about the tough stuff. Write it down if you have to. Hire a mediator if you have to...but get it done. Then, once everything is off your chests....truly let it go! I don't believe either of you can afford to harbor any ill will.

Talk to each other about how your PALS can continue to contribute to the household without getting on your nerves. I don't know if you have children, but if you do, think back to when they were 3 or 4 and learning to dress themselves. It wasn't perfect, but they learned independence. The same principle applies here. Allow your PALS the dignity of doing what they can, gracefully pick up the bits that get dropped (if necessary) and then let the rest go. You'll have lots of time to clean it up (and think about how you would probably do it over if you had another chance!) later.

If there are things that are really important to you, just tell them. It wasn't easy, but I got really picky, really quick, about anything that took me away from having fun with Bill!

Shift F10

2008-05-15T08:03:00.000-07:00

Across the top of a PC keyboard, there are F keys or shortcuts to various operations on the computer. The shift key doubles the capability of the F keys. Bill quickly lost the use of his vocal chords, but never lost his "voice". He used a laptop to speak and programmed the F keys to say certain everyday things for him. He could touch 1 F key to greet you with a wave file of the 3 Stooges…Hello, hello, hello….hello. Another F key would tell you that he had ALS, he could understand you perfectly and looked forward to a conversation, but it might take him a moment to respond. You get the idea. F1 was (a very enthusiastic) Yes. F2 was ( a brief and to the point) No.

His friend Janey assisted with the "adult" content. Shift F10 was “shut the F_#% up”. Shift F9 was the companion “go F_#% yourself”. Both had several contexts:
1) That is incredible….I can’t believe it!
2) No way….you’re kidding me!?
3) Oh man…I certainly didn’t see that coming.
4) Oh….aren’t you quite the smartass today?!
5) You need to stop talking right this minute.

The key to context was all in the eyes! There were times when we were together with friends and one of the group would be in context 4. We would see Bill reaching for the keyboard and would quickly say, “don’t even reach for Shift F10!” or “go ahead…I deserve a Shift F10 for that”! We would be rewarded with a huge grin, a nod of acknowledgement and a few minutes later, he would have queued up an appropriate song.

Key: It's critical to retain your voice!

Introduction

2008-05-15T07:55:00.000-07:00

In this blog you will meet the faces of an ALS community. These communities are everywhere, literally all over the world. This one happens to be in the San Francisco Bay Area of California. This is a love story…dedicated to a man who lived, laughed and loved in a community. Now each of his friends carry his story, because he can no longer tell it for himself. It takes a village to care for an ALS patient. This is the story of our village. It is my privilege to share this collection of thoughts. Please use them as a starting point for finding your own best path.

Life is a series of events handed to you. It’s not the event itself that’s important…it’s how you handle the event. My dad explained to me early on that there are two ways to handle the events in your life:
1) Stay in bed, pull the covers up over your head, don’t come out….ever.
2) Get out of bed, dry your eyes, put one foot in front of the other and do the best you can.

I now believe there is a third option:
3) Don’t even bother crawling into bed, give the event a “raspberry”, and then run and have fun! My new favorite quote is from Matt Frewer. "Never knock on Death's door: ring the bell and run away! Death really hates that!"

So…once we got our ALS diagnosis, we had two rules that we lived by. We weren’t perfect, but we did a really good job!

Rule #1: NO REGRETS - NONE!

Rule #2: Get mad at/fight the disease, not each other! ALS will test and bring out what's great and maybe not so great in your relationship with those you love. Neither of you caused the ALS to happen and neither of you can change the diagnosis. You have a choice to make together... You can work together to make the best of a shitty hand of cards dealt to you. OR… you can spend your time fighting. It really is a choice.

You are incredibly brave….please don't ever forget that! But…I have a question? How do you want to be able to coach the next ALS family that's coming behind you? Now is your time to decide how you're going to write your ALS story....together! The rest is still unwritten.

It is only now that I'm realizing how fortunate I was/am and how much Bill and I grew, as individuals and as a couple once ALS was introduced into our relationship. It is my fondest prayer that you will find new strength in yourselves and each other and that once your PALS is gone, you'll look back fondly on this time and be glad that you got it together, together!