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!

 

Hospital Gown + Confidence = Oxymoron

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

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!

Rock on Carla Z!

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!!

Angels Among Us...continued

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

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

ALS patients are not babies...

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.

Support Group - Strength and Knowledge in numbers

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

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.

Learning to laugh

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

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

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.

Life is like needlepoint...thoughts on perspective

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?

Laughter is good medicine

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!

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

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!

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!

Family...a new definition

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

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!

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

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!