One of the BEST daily emails I subscribe to is called Peaceful Daily.  Thank you Sandy for your daily wisdom, and especially for this story....a reminder to me of all the "shit" that's been shoveled my way.... it doesn't have to bury me, it can be a way up and out.  How are you shaking off the dirt and stepping into your freedom.  It's always a choice!

Peace


One day a farmer's donkey fell down into a well. The animal cried piteously for hours as the farmer tried to figure out what to do. Finally, he decided the animal was old, and the well needed to be covered up anyway; it just wasn't worth it to retrieve the donkey.



He invited all his neighbors to come over and help him. They all grabbed a shovel and began to shovel dirt into the well. At first, the donkey realized what was happening and cried horribly. Then, to everyone's amazement he quieted down. A few shovel loads later, the farmer finally looked down the well. He was astonished at what he saw.

With each shovel of dirt that hit his back, the donkey was doing something amazing. He would shake it off and take a step up. As the farmer's neighbors continued to shovel dirt on top of the animal, he would shake it off and take a step up. Pretty soon, everyone was amazed as the donkey stepped up over the edge of the well and happily trotted off!

MORAL: Life is going to shovel dirt on you, all kinds of dirt. The trick to getting out of the well is to shake it off and take a step up. Each of our troubles is a steppingstone. We can get out of the deepest wells just by not stopping, never giving up! Shake it off and take a step up.

Extra Hands

One of the serendipities that happened to us was a group called "Extra Hands for ALS", founded by Jack Orchard, an ALS patient who lost his battle way too young. The premise was to get high school and college students involved in specific volunteer work to help families living with ALS, and then educate the general public about their experience.  Help families, great ALS awareness/advocacy, and a great learning experience for young adults.  Win, win win!

I'm sure that the experience was different for every family involved in the program, and sadly, the group died out not long after Jack died.  Still, we had a wonderful experience with Matt and Julia, our "extra hands" and the nuggets of experience I took away could reasonably be applied today, without a formal program.  I think!  Here are some thoughts on how someone in an "ALS Tribe" could harness the energy and enthusiasm of students and young adults to benefit a patient/family.

Disclaimer....please, please, please, use good judgement and common sense!  If you are the primary caregiver for a patient, DO NOT attempt this.  You have far too many other things to worry about!  Do what makes sense for you, the group of young people involved, and absolutely respect the wishes of the patient and primary caregiver.  The idea here is to help them, not add unnecessary/unwanted stress, even if your intentions are honorable. 

Logistically, you will need

• a mentor
• a schedule
• a willing family with an ALS patient - or any other chronic/catastrophic illness actually!
• a few willing students
• tasks that the family feels comfortable delegating or having help with.

The MENTOR is the liaison between the family and the students.  This person should be strong in organizational, scheduling and diplomacy skills.  He/she will be the one to coach both the students and the family, help resolve disputes and to generally supervise the relationship.

The SCHEDULE is coordinated between the family and the student.  Kind of obvious...I know!  We found that once a week, for a couple of hours worked out really well.  It gave me time to organize tasks and think abouut any instructions that might be needed.  And, it gave Matt and Julia the structure they needed to plan for homework and other activities.  Depending on the task(s) and the time of year, your schedule could be different, e.g., more frequent, but less time; less frequent, but more time; more people, regular rotation, etc.  You will know what works for your situation.

The WILLING FAMILY.  If you are a relative or neighbor who takes on the mentor role, one of the biggest challenges will be to work with the patient and primary caregiver.  In general, my experience has been that patients and their families are pretty private and will insist that they are quite able to handle things on their own.  No one wants to be a burden to anyone else.  You may have to get creative in your approach to find the willingness!  It's a delicate balance between handling everything and delegating tasks to relieve the burden of caregiving.  And there's always the competency dance....no one does it like I do, or like I like it done.  We humans are funny that way!!

For example, it's pretty easy to suggest allowing a student to walk the dog(s).  Easy to do and not much instruction needed. And...somebody needs to do it!!  However, if the only respite the primary caregiver gets is the 30-45 minutes to take a walk and clear their head, they are probably not going to delegate.  If however, you know that the dog is getting a quick 5 minute "do your business" outing, a longer walk a few times a week will be good for the dog and likely relieve some guilt that the family pet is getting short changed!

Grocery shopping is another easy, but tricky to delegate task.  For Bill and me, shopping was always like a date for us, so it was hard for me to let go.  However, by having Matt and Julia become Bill's arms and legs at the local Safeway, he was able to get a change of scenery, feel like he was still contributing and he often managed to teach the kids something they wouldn't have learned otherwise!  They usually returned from these outings all smiles, and the 45-90 minutes of peace was a great gift for me.  It often meant I got more that a quick rinse off in the shower and I could "doll up" a little.  A pretty good trade off!

One of the most special events that came out of our EH experience was a dinner that the kids prepared for their parents, who hadn't met prior to the program. Under Bill's direction, they planned the menu, shopped for and prepared the food, set the table, provided the entertainment (we watched them cook/interact), and cleaned up the mess. I can't speak for the parents, but I was truly impressed by how well the kids worked together, as equals, to bring fun into our home and provide a brief glimpse into their futures. It was a truly special evening!


WILLING STUDENTS.  We were lucky!  The Extra Hands team recruited and screened the students in the program.  If you're working with family members or neighbors, you're probably familiar with their skills, temperaments and background.  I would NOT recommend organizing strangers, unless you have the background and resources to screen and insure these volunteers.  It's a HUGE undertaking.  Again, please use common sense!!!

One of the components I found appealing about the EH program was the learning opportunity for the students.  At the end of each 6 month segment, or at the end of a volunteer engagement, the students were required to formally document their experience.  Julia and Matt both did formal write-ups for school projects. Julia shared hers with me at the time of Bill's death and it was quite moving. I haven't seen her in 7+ years, but she left a beautiful imprint on my heart and I think of her often.

You might encourage your volunteers to keep a journal or diary of their experiences.  Record the day's events and their thoughts on the patient, the relationship, how they were challenged, what they had to overcome....really anything and everything!  Think about this as you set up your program.

You can also arrange a regular meeting with the family as a check-in session to share these types of insights.  I imagine that it would be a rich and rewarding experience.  It will also help with insights into additional opportunities to provide help.  A quarterly session to consider what is working and what can be improved, can also be rewarding.  If the patient progression is rapid, you might want to meet more frequently. 

The TASKS are limited only by your imagination and the willingness of the family. 

• If there are younger children, students can help with homework or help out with household chores.
• Yard work is an easy to manage project as well.  Consider basic mowing, raking, weeding, deadheading, or annual planting. This is also a good, one-time project for a neighborhood group to tackle!!
• Routine chores like folding laundry, making beds, helping kids clean rooms are tasks that are easily delegated.
• We had Matt and Julia help prepare meals, take Bill grocery shopping, build a kitchen island (3 week project), shop for plants/potting soil, and I'm sure there are more that I've forgotten!!  As previously mentioned, grocery shopping was a favorite.

A little imagination, some good organization and great communication can go a long way! Consider setting up an Extra Hands "like" program for someone you love and please leave a message on how it goes.  I'd love to hear about your experience!

 

Bringing Sanity to Mass Communication

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!

Patients with Pluck!

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

Calendar Girls (and Guys!) for ALS

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

Dignity, Self Sufficiency and Safety...PRICELESS!

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.

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?

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.

1. 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).
2. 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.
3. 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!

The Tentra Totem - A Rx for Living

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!

Aftermarket add-ons for your wheelchair – Safety and Style

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!

The New Road

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.

Advocacy in action...

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

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.