Following the shock of my diagnosis of ALS in 4/04, and lacking any preparation, I felt lost in a nightmare, overwhelmed by negative thoughts. Gradually, by going to numerous websites and other sources, I learned something about coping but it wasn’t until February, 2005, when I joined Living with ALS, a message board group, contributed to by patients and their family members, that it all started to come together. There, I picked up practical and basic information, all with the personal contact missing from other sources, and a philosophy of learning to live as fully as possible with ALS. The supportive and compassionate nature of the posts helped me through some rough times and, through reading the messages and chat transcripts, I came to better understand the meaning of courage. Eventually, I regained my bearings and had, in the process, accumulated a great deal of information on coping with ALS and related areas. The idea spontaneously arose to use what I knew to compile a Guidebook/Manual for those who had been recently diagnosed so that they would have one resource to turn to that offered integrated information presented in a positive, patient/peer oriented framework, rather than having to go through the time consuming process of sifting through many sources on their own. Thus, this Guidebook was born.

The Guidebook could not have come into existence without the help of the Living with ALS members. Thanks are due to  Sherry, Susan, Jeff, David, Erin, Wayne, Cookie, Ruth Anne, Lee, Lisa, Alper, Don, Edith, Thom, Diane and the whole group, too numerous to name, from newbie to veteran, who have taught me so much. A special thanks goes to those who contributed personal stories and articles to the Guidebook.  Danny Dandignac reformatted the Manual and made it look more professional. Jerry Bergen created my webpage so that the Guidebook could be read on line and/or downloaded and comments left.

I want to thank my two children, Brett Roberts, M.D. and Heather Roberts for sharing their knowledge of Microsoft Word. Without their help, I would still be copying and pasting.

Finally, I wish to thank my wife Pam for her loving care and steadfastness throughout my ordeal with ALS.

Randy Roberts

Ellicott City, Maryland

January, 2006

As a result of the popularity of the first edition and feedback from readers, I decided to assemble a second edition of the Guidebook/ Manual that presents major revisions and new material.  There are three new chapters on Advocacy, Research and Major Materials/ Resources available at no charge. The chapter on Entitlements and Benefits has been completely rewritten. There are significant additions to many of the original chapters. All the articles were written by PALS or CALS.   

I would like to thank members of the Living with ALS Group and others who contributed posts and articles to the Guidebook. Without the help of Jerry Bergen, the guidebook would never have appeared on line.

Finally, I would like to thank my wife, Pam, who has been at my side every step of the way.

Randy Roberts

Ellicott City, Maryland

November, 2006

As we jokingly like to say, welcome to the club that nobody wants to join. Right now, you are likely to be in a state of shock; your world rocked by a disease that you may never even have heard of. Alternatively, you may be in denial, blithely going about your business, but with doubts creeping in. Once the shock wears off, and it will, you are likely to go through different stages or, more accurately, states of mind.

•  Denial (this isn't happening to me!)
•  Anger (bitterness, short-tempered, why is this happening to Me?)
•  Bargaining (I promise I'll be a better person if...)
•  Depression (I don't care anymore)
•  Acceptance (I'm ready for whatever comes)

Different personality characteristics and circumstances may influence the course of movement through the stages. For example, I went from a lengthy shock state right to depression before I reached some degree of acceptance. Few people move up the states of mind in sequence. Even after acceptance is reached, regressive but usually temporary moves are to be expected after significant losses in functioning abilities. By now I have experienced all the states of mind, many, many times. I can return to the shock stage, too, and then work my way back.

This list of classical stages can be used as a yardstick to measure your own progress towards acceptance.  If you regularly feel bitter, hostile and irritable, then you might be caught up in Anger. If nothing matters to you anymore and life brings no enjoyment, then you might be mired in Depression.  But these feelings can be worked through, and periods of acceptance will follow, which will open the window to adjust better to your vastly changed circumstances.  It sucks to have ALS, there is no other way to say it. It is one crummy disease, but you will see in these pages how many people go on to live rewarding and meaningful lives, nonetheless. There is life after ALS. Our emphasis is on Living with ALS, and we hope this Guidebook will assist you in doing just that.

You are not alone, there are many PALS (Person with ALS) and CALS (Caregiver to a Person with ALS, usually meant to include spouses, relatives, or significant others) to help you with their knowledge, support, humor and insights.  We have been through the same kinds of symptoms and feelings as you and are ready to share our experience.  What you read can inspire and give you courage to fight this illness.

                                                                                                                                                                     This Guidebook is an introduction to our world; pieces written by PALS and CALS as well as articles offering practical information, culled and integrated from the large ALS literature. Materials were chosen specifically to be appropriate at this most vulnerable and traumatic time in your lives. I hope that reading this Guidebook may help lift the fog of confusion that you may be feeling. May it also provide a more informed and hopeful approach to ALS than the one you now may hold.  Much of the material in the first section on coping comes from posts on the Living with ALS message board group. They are unedited but come directly from the heart. Later sections provide information about the full array of resources that you need to battle this disease.  Most of all, the Guidebook will help you link up with the peer community of PALS and CALS.

If some of the terms used in this Guidebook are unfamiliar, please go to chapter where definitions of medical and related terms are provided.

There is much more available to help you move in a positive direction. Many references have been included for you to obtain more information.  This Guidebook contains too much to take in at one sitting, so come back to it every so often. Eventually, you may expand to new areas and more comprehensive and in-depth material. 

As mentioned, this Guidebook is designed for people who have internet access, although a paper edition is available. If you do not yet have a computer, you should consider getting one as soon as possible. Without the capacity to go on line, a window to the world of ALS resources and peer support will remain closed and you will lose the opportunity to spend many hours productively.

Once again, welcome to our family and we hope that this Guidebook is helpful to you, our newest PALS and CALS members.  Please remember that you are not alone; many others are there with you and for you.                                                                                                                                               

Although this guidebook is about coping, a few words about ALS itself might help. ALS stands for Amyotrophic Lateral Sclerosis and the Amyotrophic is the most telling part of the disease’s name. “A” stands for no, “myo” for muscle and “trophic” for nourishment. This literal definition indicates that our muscles are lacking something essential. But ALS is not a muscle disease. Something else has gone wrong and it is the key to understanding the illness. The nerves or neurons that command the muscles are gradually dying off and that is the real culprit in ALS. When you want to move a body part, say your arm, an impulse is generated in your brain and the signal to move is then sent via motor neurons to the spinal cord and finally out to the muscle. And then the arm moves. In ALS, however, the neurons begin to die off and the command to move does not reach the muscle as well. Muscles that receive diminished signals from the neurons will weaken and shrivel up.  Muscles cannot stay strong without continual input from neurons.  

Wherever the neuron death begins, it gradually spreads to other motor neurons in the body, causing further weakness. The rate of this spread is called “progression” and can vary quite a bit between PALS, but tends to stay steady for individual PALS.

The disease affects only motor neurons in the body and only those neurons that serve muscles over which we have voluntary control, such as limbs, swallowing, eating, etc. The heart muscle, for example, over which we don’t have voluntary control, is not affected by ALS. The illness does not affect sensory neurons.

There are 30,000 to 40,000 people in the US with ALS. It can strike as low as the early 20’s and as late as the 70’s, but onset tends to peak at late middle age.

ALS is not as rare as people think. It is diagnosed with nearly the same frequency as MS (Multiple Sclerosis), a much more recognized disease. ALS is much more lethal than MS so our numbers (prevalence) is much lower.

There is yet no effective treatment for ALS (Rilutek, the only medicine for ALS,which increases life span by only a modest amount), nor is there any scientific understanding of what causes the disease. However, more research is underway now than ever before.

This section contains stories and articles designed to help PALS and CALS live with

ALS not just endure it or, even worse, feel miserable. Although each has a different point of view, some recurring themes emerge, as given below:

This section contains stories and articles designed to help PALS and CALS live with

ALS not just endure it or, even worse, feel miserable. Although each has a different point of view, some recurring themes emerge, as given below:

•   Maintain a positive, determined, and optimistic attitude

•  View ALS as a disability with major challenges that can be overcome

•   Find ways to remain productive and engaged in life

•   Manage negative emotions

•  Express personal feelings

•  Keep involved with significant others and new on line PALS and CALS

•  Possess knowledge of the illness and of resources that can help substitute for failing capacities.

•   Feel a sense of spirituality, however defined

•  Live within a supportive care giving atmosphere

These characteristics define the acceptance stage: an active and persistent effort to cope with the disease.

Fans, for the past two weeks you have been reading about the bad break I got. Yet today I consider myself the luckiest man on the face of this earth.
I have been in ballparks for seventeen years and have never received anything but kindness and encouragement from you fans. Look at these grand men. Which of you wouldn’t consider it the highlight of his career just to associate with them for even one day?
Sure I’m lucky.
Who wouldn’t consider it an honor to have known Jacob Ruppert? Also, the builder of baseball’s greatest empire, Ed Barrow? To have spent six years with that wonderful little fellow, Miller Huggins? Then to have spent the next nine years with that outstanding leader, that smart student of psychology, the best manager in baseball today, Joe McCarthy?
Sure I’m lucky.

When the New York Giants, a team you would give your right arm to beat, and vice versa, sends you a gift – that’s something. When everybody down to the groundskeepers and those boys in white coats remember you with trophies – that's something. When you have a wonderful mother-in-law who takes sides with you in squabbles with her own daughter – that's something. When you have a father and a mother who work all their lives so you can have an education and build your body -- its a blessing. When you have a wife who has been a tower of strength and shown more courage than you dreamed existed -- that's the finest I know.
So, I close in saying that I may have had a tough break, but I have an awful lot to live for.

How has your life changed since being diagnosed with ALS? I realize
this is a broad one, please share whatever you feel is pertinent.

Obviously I'm not much of a basketball or baseball player anymore.
It's given me an opportunity to slow down & smell the roses. I've
also been able to see the best in people from my wonderful caregivers
to the kindness of strangers. It's amazing in the worst circumstances
people do some great things. I've become more compassionate &
Spiritual in my thinking. I've had to be willing to adapt to changes
as they come & try & stay ahead of the curve. I've become closer to
my family, parents, sisters, brother, Son, nieces & nephews. I'm
fortunate to have them all close by. ALS truly is a family disease.
My son Kyle is 18 & has grown into a nice young man & handled my ALS
better than I ever imagined. He does drive me nuts at times but
that's his job. I think my parents pay him to bug me too for payback.
(: The strange thing that happened is my nephew was learning to walk
as my walking declined. Only he didn't have as far to fall when he
stumbled. (: Now he & his brother are really good basketball &
baseball players.

How do you find the strength to be such a positive force/what
inspires you to really live your life?

I think my faith in God has helped me a lot in my life before &
after ALS. I knew where the
right path was even though I've done some serious off roading. (: I
have a lot of people praying for me & all PALS. I know God must have
helped me get this far & hope he has more use for me on Earth. I've
tried not to ask Why me? too much but it's only natural for us. I
don't think God gave us disease because of anything we did wrong. In
fact many good people have had it worse than I have. I believe God is
all around us in good deeds that people do everyday. We can see this
if we slow down & really look.

If we're put on Earth to help others then I'm a golden opportunity.

ALS may take my body from me but it will never conquer my spirit.
There is always hope! Hope is what keeps humans going
each day in whatever life throws at us. As long as we realistically
make plans or take steps to prepare for a worst case scenario while
remaining hopeful that things may be ok, that's not denial in my
opinion. Balancing being prepared but not dwelling on the "worst"
while remaining hopeful is the key to coping. The old adage "plan
for the worst but hope for the best" is good advice.
Steaming the Titanic at full speed through ice laden waters with few
lifeboats because of the unsinkable belief, that's denial or plain old
PPP.

How do you handle the moments when you feel sad, frustrated or angry
with ALS?

Honestly, I'm seldom sad. I don't allow myself to feel sad. I use
humor a lot. You have to laugh at some things that happen. Like when
people talk loud at me. I didn't know wheelchairs made your hearing
bad.
I found when I let go of the things that were out of my control & let
others help that I wasn't as angry & frustrated. I then focused on
other things I was able to do & became more contented & happy. It's
important for PALS to feel some worth & contribution no matter how
compromised we become. With my Eyegaze computer & ability to access
the internet I'm able to do many things my family cannot so that's my
niche.(:


My Dr. who dx'd me in June 1996 at age 29 said to me "You're not dead
yet." He's still right almost 10 years later. Back then there were
only a handful of websites on ALS & Riluzole was just approved by the
FDA. Now there are 100's of ALS Sites & orgs raising money for
research. The human genome project has mapped the genes of humans &
is still being searched for clues on possible treatments. Super
computers are testing all the compounds of medicines for possible
treatments & stem cells are being studied & MAY be the treatment or
cure we need. Polio & Smallpox were once devastating diseases & now
thanks to brilliant & dedicated scientists they are almost
nonexistent today. I have a lot of hope that the next Jonas Salk
(polio) or Edward Jenner (smallpox) is in a lab or classroom today. I
hope it will be soon though. I don't count the last times I'll do something again anymore like I did at first. I seldom think about dying anymore & I really don't
think I'll die from ALS. I like Morgan Freeman's line in The
Shawshank Redemption. "You need to get busy living or get busy
dying." The point is don't worry about things you can't control. Keep
busy doing what you can today & learn new things to replace the old
things that you have to let go of. You will be surprised at how you
can adapt to each new challenge & find joy in simple things.

•  To this life than meets the eye. You will have plenty of time to think about these things, the ultimate meaning of life, the nature and existence of something or someone beyond us and upon which we depend. You don't have to have any formal religious training or upbringing. The process of discovering meaning and purpose beyond our own little worlds is the beginning of spirituality. Spirituality does not have to have any complicated theology. In fact, the simpler the better.

•  Trust your instincts. In spite of a lifetime of religious faith, I have come to believe that God did not cause me to have ALS, and in fact is as saddened by the bad things that happen to people as we are. I also am confident that God is with us in all of these things just as he/she/it has been with millions of others over the centuries.

•  This disease can help us develop a sense of gratitude and wonder about the mystery of life and death. It has taught me to embrace the difficult experiences of life as opportunities instead of as obstacles to a meaningful life. I enjoyed "Learning to Fall" by Philip Simmons, a teacher and writer who had ALS.

Taking care of your caregivers.

•  ALS is a social disease; it not only affects us who actually have the physical symptoms, it also profoundly affects and changes the lives of those around us who love us and care for us. We have a responsibility, especially if we want to learn how to adapt and prosper, to make sure we don't overtax our caregivers physically and emotionally. We will naturally tend to become demanding, frustrated and impatient at times. But the more we do this, the less people will want to be around us.

•  Make sure your network of care is wide enough to give people some time away to recover and recuperate. Avoid the temptation to just pick out one or two favorites upon which to rely completely. No one, no matter how much they love us can handle the load by themselves.

•  You will learn gradually that you can tolerate not getting immediate help that you don't really need: tolerating an itch you can't reach.

What we think about plays a major role in how we feel. That is obvious but much more subtle than we realize, because we are often unaware of what thoughts are running through our mind. We get so engrossed in the thoughts that their relationship to our feelings is not easily grasped.  The same brain chemicals that alter mood are released whether an emotion-laden event is occurring or whether it is being imagined. The brain doesn’t seem to register the difference. So, if we think of a horrible event we feel the same way as if the event were actually occurring.

When I was first diagnosed and relatively free from major symptoms, I would wake up in the morning feeling ok, but within 10 minutes I became an emotional wreck. I didn’t really understand why until later when I realized that I had begun to think about having a “dreaded” and “awful” disease.  Focusing on those negative thoughts destroyed my good mood very quickly.  Then, I began to look at other times during the day when my mood became blue and I realized, in every instance, it followed similar negative thoughts. I was able to divide these pernicious thoughts into three categories:

1.Reminding myself over and over that I had ALS, that I would never recover and questioning why this happened to me, thus re-traumatizing myself constantly.

2.Thoughts about my limitations; what I couldn’t do anymore, what I was missing out on, envisioning myself becoming a “cripple”, etc.  I noticed that seemingly minor events could instantly set off a barrage of negative thoughts, seemingly out of conscious awareness, e.g. seeing somebody running (I used to be a jogger), hearing others’ vacation plans, etc.

3.Fantasies of what “horrible” things awaited me in the future.

Thoughts of what lie down the road for PALS, which tend to focus on our worst fears, are guaranteed to bring you down quickly, even though what we imagine is often illusory. Our lifetime of experiences has taught that the future is filled with the unexpected. Of course, obsessive worry is to be distinguished from reasonable planning, which is valuable. But still we cling to the idea that we know what lies ahead. A recent experience of mine provided yet another lesson. When I was first diagnosed, I became focused on making certain all my financial matters were taken care of. I called my stockbroker, told him of my illness, and asked him to take over the remainder of our securities because I wouldn’t be able to manage them on my own soon (which itself turned out to be inaccurate). He expressed shock and sympathy at my plight and assured me that our assets would be managed well. About six months later as  I tuned into his weekly regular radio show and learned that he had died in a tragic, freak accident. This vibrant and healthy 45 year old man, who was supposed to take care of our assets for many years to come after my death, was now gone and I was still here.

I began to see a one to one correspondence between the more exaggerated the negative thoughts and images and the more miserable I felt.

I was also able to observe the opposite: when I was productively engaged in something, I was not depressed. Where was the ALS then? Where was my suffering?

I can say all this in another way.  The future is unknowable and unpredictable. All we really have, all that anyone has, is the present moment.

I also observed how negative thoughts, once started, develop their own momentum and can take you far from your starting point. Here is a fictional example. You are driving down a road, feeling ok, admiring a pretty view, when the thought pops up: My arm is so stiff that I won’t be able to do this much longer.” And the following internal dialogue may ensue, with your mood going down and anxiety rising the more thoughts add on. “Why did I have to develop this awful disease. How could there be no cure. I am doomed. Why go on with life, with all the awful stuff coming that I’ve read.  Life had been so good and we were all set for retirement in a few years. I won’t be here when our grandchildren are born. I’ll miss so much. I don’t want to die. I bet I will be one of those with fast progress. I don’t want to be a cripple. I don’t deserve this. I can’t stand it anymore, etc.”   So this person goes from enjoying a pleasant experience to feeling hopeless and depressed, due to a runaway train of thoughts.  

As I became more aware of how these automatic negative thoughts destroyed my peace of mind, I became able to drop some of them, just cut them off as soon as I became aware of them, before they did more damage.  

So newbies, try this: when you start feeling down and anxious, stop for a second and identify what you had just been thinking or visualizing. I’ll bet it was one of the three categories of negative thoughts and images described above or something close to them.  Just dwelling on them for a minute can detrimentally affect your spirits, dwelling on them longer can wreck your peace of mind.  Do this same exercise time and again until you really begin to see the link between those thoughts and your worsened mood. Then, work on letting go of those thoughts as they arise. The earlier you are able to intervene, the better. Waiting until the thoughts become entrenched makes for a tougher situation to deal with. Let the downward spiral in your mood act as a guide. As soon as you feel it, get into action mode. We can’t change ALS, but we can change how we think. You will feel better and start living more.

One last point, don’t think I am saying that you should do away with all past and future thoughts. Memories are a source of pleasure and define who we are. Thoughts of the future can give us something to look forward to. However, just stay alert because such thoughts can quickly turn negative as we drift into thinking how ALS has ruined our lives.

Many PALS also take antidepressant and/or anti-anxiety medications to obtain further help with depressed/anxious mood. You might speak to your doctor about it.

If you've ever wondered what hope looks like, it looks like Jeff Lester. He was 26 and a former high school football player when he met his future bride.

"He was very sweet, very caring heart. Good looking, tall, dark, handsome," said Lisa Lester.

But there was something wrong. That same year, after feeling weak and lethargic for months, he was diagnosed Amyotrophic Lateral Sclerosis, also known as Lou Gehrig's disease.

"And I didn't even know how to spell Gehrig, I mean like Lou Gehrig's disease," said Lisa. “I had to ask a guy how to spell Gehrig because I knew nothing about the player, the disease or anything."

Named after the Hall of Fame Baseball Player who died of the disease, ALS attacks the nerves causing muscles to waste away.

Lisa decided to marry Jeff anyway.

"I don't know. We just had this connection. We loved each other and it was just one of those things where a healthy man could die tomorrow. We just took it day by day and took what came," said Lisa.

Thirteen years later, Jeff Lester is still very much alive. A ventilator helps him breathe. And while you and I might have trouble Lisa understands him perfectly.

"This disease can take my physical but I'm going to live as normally as I can," she translated as Jeff spoke.

Jeff's pride and joy are his children. Jordan is just four months. Emily is three. Kelsey, who is 10, helps take care of her dad. Kelsey wants to become a doctor or nurse when she grows up.

"Because I know a lot of things about ALS,” she said.

Jeff says one of the reasons he's beaten the odds is because he maintains a positive attitude. Thanks to a computer and the laser technology on a special pair of glasses, he's able to pass on that advice when he talks to ALS patients around the world, while hosting a weekly chat on the Muscular Dystrophy Association website. Dying, according to Jeff, is not an option.

"I really don't think about it. I'm too busy being a husband, father and working with other ALS patients, he said.

There is no cure for ALS. But Jeff Lester believes there will be soon, and that one day he may actually walk his girls down the aisle
Until then, he plans to go on living with ALS.

JEFF LESTER’S RESPONSE TO A POST ON PREDICTING LIFE EXPECTANCY

I will only add that you should not only ignore any prediction of life expectancy but also totally IGNORE any limitations they give you. I was basically told to go home and plan my funeral at 26 but instead now over 12 years, getting married, 3 daughters after that suggestion and with countless achievements under my
belt; MY LIFE HAS JUST BEGUN with an exciting business venture and more writing in my immediate future and who knows what great adventures after that maybe even getting off the ventilator and walking again (God willing and with a visionary political leader who rises above the noise to push essential research forward!)

Oh Honey,

I recognize so much of myself right after my own diagnosis in
your post. You're exhausted and overwhelmed by everything right
now. Please, please hang in there and don't continue to despair.

You're still alive, and you're surrounded by love. Look at your
grandchildren, look at your husband (back with you after all these
years), look at the world around you.

The world we're in has so many beautiful things to appreciate
today and tomorrow. Enjoy everything around you, recognizing that
there isn't one among us who will get out of this life alive. That
said, no one is pushing you out the door today either.

Talk to your doctors about your inability to sleep and your
feelings of being overwhelmed to see what they can do to help you
get some much-needed rest so you can battle to LIVE with your
ALS.

Everything in life happens for a reason. Our job in life is
dealing with what's thrown at us. It sounds like you've done that
wonderfully all your life. Roll up your sleeves, Dear, and get back
in the game. Trust that there is a higher power watching over you
and your loved ones.

Write to let us know you've turned that corner and see the
bright light of day is ahead of you...with many more to follow.

Pleez xcuz my Shrthnd, as im n my 12th yr LIVIN W/ ALS, aka Lou Gehrigs
Disease ... I type very sloly w/ 1 finger, so ever Shrtct counts ...
Bsides, wen th Brits conjured up th language, they made it 2 complicated


Hi 2 all my felloW PALS & all my frnds ...as Mark Twain once sed, " th news of my demise, has bin grossly xagerated"…Still on th ranch sw of Williams , i dont get around much anymore, as th song sez but, i hope 2 get more nvolved as i "cultivate more caregivers”

i was recently ask y I’ve lived so long w/ ALS, so ill xplain my thoughts in
this lettr … im n good shape 4 th shape im n ..... lots of water under th bridge, as im n 2 my 12th yr livin w/ th beast its a soberin thought
wen i think abt it, thers more & more of us sailin right past that magical 5yr mmark, hopin 2 baround 4 th cure ......THERS HOPE N THE FUTURE ......... 4 THINGS I CREDIT 2MY LONGIVITY .......

1st is SPIRITUAL .dosnt take long 2 GET RELIGIOUS wen yur told u have a
terminal illness ... especialy wen yur told that you have is 5 yrs, & u
kno that used to be 2 or 3 yrs up ... dosnt matter if yur a CHRISTIAN,
JEWESH, BUDHIST, ETC .... AS LONG AS U REALIZE THERE IS A GREAT SPIRIT
THATS A DEMINSION WE DONT UNDERSTAND RITE NOW ..... wen u find the Lord
(watever he, she, or it is), yur on th rite track ... ther r many paths
leading 2 th same place wich n my faith is heaven ..... i attend church
services, Sunday School & Prayer meetins on a regular basis ... i havnt
bcum a fanatical born agen Christian, but i get a lot of support frm my
church family & i bleev n th power of prayer ........also included n
spiritual is Love......... wen i was named 1 of 2 Ironman PALS n 94, my
bro-n-law said after th banquet, he culd feel all th Love w/ n the hall
....thers a tremendous of Love thruout th ALS Community, as well as
my Church Family ....w/ Love they’ll find th cure ..... Americans r
obsessed w/ death ..its as natural as birth & n the grand scheme of
things,our life hear on earth is but a grain of sand on th beach .. RE
DEATH,...... iv planned my funeral & my closest dear frnds last week
delivered my casket . i gav them plans 4 a pine box & they came up w/
perfect knotty pine finished & put 2gether as th finest pc of furniture I own .. usin it 4 a "hope chest" now, but if i get my own diggins
it'll b a large coffee table .......its n my bedroom now & i look at it
everday, remindin me that no1 gets out of this world w/out dyin
another focal pt n my bedroom, is my restored (cost me $1800 2
restore it) hrdtop 4 my Austin Healey, wich reminds me that 1 of th goals n
my life, is 2 drive th Healey again..back 2 th casket; ill send a
picture & nfo wher 2 get th plans . jst 1 more thing dun & i hope 2 use
it as storage 4 another 20 yrs .... "ILL B TAKIN A LONG TIME DYIN; FOR
ILL B A LONG TIME DEAD"...... ILL B LAID OUT N LEVIS, SPENDERS, & A RED
SHIRT ...YA GOTTA LUV CLAMPER FUNERALS... Also, re my funeral, there will b a min of Preachin & a max of music...people will b surprised who i pick 4 Pall Bearers & Honorary P Bers, as iv overlooked sum frnds of
over 60 yrs n favor of thos that stood by me n “Livin w/ ALS”.. iv even
picked out th Parson & planned th menu 4 th party after th service
...im hopin it’ll b a happy celebration of my life, as iv said above,
people r obsessed w/ death, wile ever one does it .....’

2nd is KEEPIN ACTIVE W/ YUR MIND ... people that no me, no that i have
many nterests & blong 2 many clubs .... ie, im still a comish on th Wms
Rural Fire Disrict,E Clampus Vitus,Guns (bin a life member of NRA since
1963), Austin Healey Club of America, Early Ford V8 Club of
America,(flatheds), Graham- Paige Club  several Model T Clubs, restorin old cars, huntin & fishin, Snowmobile club, Bucks Lake, ranchin n general, wantin 2 c & hear frm old friends, meeting new
PALS & CALS n person & on th net, stayin up w/ research,and doing my best 4 ALS AWARENESS, RAISIN $$$/ ALS, & more thins that i 4get
4 now .......i also have a never endin desire 2 learn more abt almost
everthing b4 i cross th river .......i surf th nternet a lot & read a
varity of magazines & nuzpapers........ I ADVIZ NU PALS 2 KEEP SUM OF
THEIR “TOYS” & HOBBIES, AS IV DUN..... U C THAT IM 2 BUSY 2 GET SICK OR
LET ALS TAKE OVER & RUN MY LIFE........

3rd ... is HUMOR ...i njoy all sorts of jokes rangin frm super clean to
rank ...... if u go thru life w/out laffin, u wont last long ...there’s
lots of humor of ever kind on th net, so if your readin this, u hav access 2 lots of people & lots of sites, thus no excuse 4 not smilin ....... i luv the work of John Calahann, & visit his site on a reg. basis . hes a Virgel
Parks "as n VIP" type, but his focus is on people w/ disabilities . My
favorite is th 1 that shos th old west sheriff w/ his posse, surruondin an
Empty wheelchair.... ther r crawl tracks leedin away & th caption sez
"dont worry boys, he wont get far afoot" ..... gotta luv it ....... if u
cant find humor n yur disease, it'll consume u .

4th... EMBRACE TH DISEASE ... consume it & spit it out ...... when they
wrote me up 4 winnin th Bay Area ALSA Ironman award n 94, they say
my tenacity was my strongest trait ....... I’ve never have let on
that ALS will ever beat me .. i believe I’ll beat it .. not a false
hope, but a reality … get involved w/ the many resources available on
Internet.......if u dont use a computer, use the fone or th snail
mail.........help raze $$$ 4 research, as private $$$ gets results
then th govt $$$....... be vocal, rite letters, spread the word ...its

called ALS AWARENESS... I KNOW OF NO OTHER DISEASE THAT HAS A WORLD WIDE SUPPORT SYSTEM LIKE ALS .. there r 100s of ALS sites out there ..
4 starters i tell interested people 2 chk out the
<living-with-als @yahoogroups.com>, & subscribe 2 Bob Broedel's ALS Digest, iv got a long list of sites, but that’s a startin point .
again, as u can c im 2 busy 2 b very sick ..sure, i cant talk, walk or
eat normal, but I’m still control my destiny ...... i even think, i can
contribute sumthin b4 i go 2 the Golden Hills, up younder .. every PALS is a different story & different circumstances .. there’s no prototype,
jst sayin what works 4 me .....

Keep thee Faith, God Bless, & of course,
 Love to All

I am like every one else, I have my down periods but I don't let them last too long. My personality before ALS is the same after my dx. We as pals lose control of our body but we still have control of deciding what type of mood we want our minds to be in. I chose to be in a good mood, and have a fun sense of humor. Also I have had time since my dx to spend a lot of time with myself and exploring many different spiritual beliefs. I was a very physically active person before my dx. Now my brain gets all the activity. I've never been bored in my life; I've just always found something else to do. I spent a lot of time after dx catching up on my art hobbies. Now I spend a lot of time on the computer, ordering movies, bird watching, sunning myself outside and just enjoying quiet moments.  Being bored is a choice. I am still enjoying myself.

REFLECTIONS

By Chris Pendergast

Chris is president of Ride for Life, a strong advocacy organization on behalf of ALS. Through various fundraisers, Ride for Life raises hundreds of thousands of dollars which is distributed to researchers to help find a cure for ALS and to patient services. Their website: http://www.rideforlife.com/  provides further details and contains many features of interest to PALS.

When I saw the posting on living with ALS which called for long term patients to submit their thoughts about their experiences with the disease overtime, I felt obliged to write.  My name is Chris Pendergast and I was diagnosed on October 13, 1993. 

I am currently in my 13th year of living with this very unwelcome guest within my body.  By the grace of God, or blind luck (you take your choice) I have had a very slow progression.  My breathing is still reasonably good, probably in the 50% of normal range.  I began using nightly bi pap support in the hopes of maintaining optimal lung health and condition.  For colds and congestion, I have a cough assist machine to assist me with clearing mucus and keeping my airways clear and open.  A pulse ox machine helps monitor my O2 level.  I am still able to talk and eat as well.  However, my speech is no longer as strong and clear as it was in the past. 

Although my symptoms presented first as foot and ankle weakness, I am still walking to this day.  Well, I like to call what I do walking, but my wife would argue otherwise! She says I “walk” like a drunken sailor.  I do not walk far nor outside.  However, for those short distances around the house or a building, I still ambulate.   I am happy each time the legs move and transport me.  My arms have quit on me years ago, so I cannot use a walker.  I gave up driving about 5 years ago.  More recently, my fingers decided to take a permanent vacation.  That translates, I can’t type or channel surf (or pick my nose, for that matter).  Normally, I do not list or speak about my inabilities.  Since this is for other PALS, I am certain you are curious about my function and so I wanted to describe them.  It is far more healthy and upbeat to identify those things I can still accomplish along with finding new things to enjoy. Regardless of the loss, there are doors that open and opportunities arise which allow us to do different or new things. 

The Manual’s creator, Randy Roberts, wanted us to reflect and share our insights about the disease.  After reading all of the thoughts express by the previous writers, I wondered what else I could add?  They did such a good job.  I agree and support the wisdom and advice presented.  I will try to add some novel ideas. 

Above all, my goal is to give hope to newly diagnosed patients and their families.  Let me broadcast loudly and clearly, “Life goes on after diagnosis.  Good times are still ahead.  So are challenges and unforeseen obstacles.  From this point forward, what happens to each PALS and their family is wholly within your power to control.  ALS does not end your life, it only changes it.”

Writers have pointed out that ALS is not fatal in itself.  It is the damage done by the paralysis to other organs which lead to death.  There are steps that can be taken at each stage which will preserve life.  The question that must be answered, and only each individual PALS can do it, “how can I be happy, content and at peace” at different stages of the disease.  Living as long as I have, I have met the full range of reactions.  I know people enormously happy and productive although tethered to a vent.  They get out and about.  They write, read, manage their finances, play games all those activities that we consider normal.  Living with a vent is an inconvenience, not a nightmare.  In fact, during our Annual Ride for Life, which is a multi-day 150 mile journey, we have had vent patients join us! 

By contrast, I have met PALS who were so distraught at needing a cane or requiring assistance with dressing.  Few of them were able to cope with the progression of the disease. Each loss was marked with inconsolable sadness layered with bitterness.  Rather then surviving (and even flowering) in spite of the disease, they sunk in a deep, dark hole. 

What makes PALS react so differently?  Is it possible that with encouragement and support, PALS can be guided to a different view of their illness?  Can they learn and fight to create a healthy mental outlook which will make their surviving years happy?   Can we help PALS who are optimistic and encouraged remain that way?  I believe they can and that is why I am writing. 

Other writers have given wonderful advice.  Stay positive and engaged in productive activity.  Keep abreast of research and be involved in some advocacy group.  Become an expert and advocate for your care.  Stay ahead of the wave and know what steps and adjustments lie ahead.  Take part in fundraisers and awareness activities.  Embrace your illness and learn to live with it instead of constantly fighting against it.  Adjust your life, so you can continue your journey, rather then dig in and refuse to accept the inevitable changes.  It is like the Kenny Rogers song, “You gotta know when to hold them and know when to fold them.”

Allow others the joy of helping you.  Think back about when you helped others and remember the good feeling that it brought you.  Don’t let your pride and stubbornness interfere with loved ones and friends who are eager to help you.  Ironically, your need can be a blessing to someone else who has the opportunity to be a friend and help. 

Lastly, don’t fear death.  Everyone will die.  It is inevitable.  Once you are struck with an illness like ALS, death is no longer an abstract idea.  We face it in the mirror everyday.  Carrying the fear of death can be devastating and debilitating.  Facing and accepting it is liberating.  Henry Thoreau expressed it best when he said he was not afraid to die, he was more afraid of never living. 

So my ALS family, let me challenge you to follow the words of Thoreau.  Don’t be afraid to die from ALS.  I want you to be afraid of failing to live while you have it. 

I continued my career as a teacher even though I was dependent upon my electric scooter and I was unable to write.  I believe my students learned far more about life than from any other teacher they had.  Even with my serious disability, I was nominated as a candidate for New York State Teacher of the Year. I retired after reaching pension benefits in 2003.  I continue to teach through school presentations I deliver about ALS throughout the Metropolitan New York area. 

Early in my illness, I formed a not-for-profit, IRS recognized charity to raise awareness and money for research.  With the help of countless friends and supporters, we have ridden thousands of miles, across a half a dozen states on our mission to spread awareness.  Through the efforts of so many PALS and their families, Ride for Life has raised nearly 1.5 million dollars which funded so many research grants and assisted scores of patients. I have published stories and articles about the disease. 

Today, at 56, my life is not at all like I dreamed.   My pension does not pay for a winter retreat but instead for a live in caregiver.  It is not a life I would have chosen.  However, none of us can select our future.  We all plan for our future but so often life makes us do a ninety degree turn.  All we can do is take what we are given and make the very best of it. 

I shared some of my accomplishments and life not for praise or out of pride.  I shared it simply as a model.  I am not superhuman. I am no different than the other long living PALS who have written about their lives.  What we have done, you can do.  We simply want to give you hope. 

A treatment will be found.  The disease will be slowed or stopped by medicine.  It is only a matter of time.  I hope everyone who reads the Manual will live to see that day. 

My final thought is personal and perhaps controversial.  Don’t be afraid to turn to God.

MY STORY OF LIVING WITH ALS

By David Jayne

This month marks 18 years when ALS symptoms first appeared in my left arm. I was diagnosed later in 1988. In the same week I was diagnosed I found out my life long dream to become a father had come true. While that week was incredibly bittersweet, I am certain it is the key to my longevity. After I recovered from the shock of the typical death sentence we all receive, I decided ALS would not take my life because I had a child to raise. I want to share some thoughts from my experiences.

Diagnosis, I was diagnosed very early in the disease process. I was sure it was nothing more than a pinched nerve. I was diagnosed at Emory University hospital and I agreed that interns could follow my case. The day the neurologist told me I had ALS; I was seated on an examination table with several interns surrounding me. The neurologist spoke matter of factly, it was how I would prefer to be told I was going to die if I just had some idea that kind of news was coming.  I was so unprepared that my first thought was to be concerned for an intern that was physically shaken by the neurologist's words. Yes, it is devastating and life changing, but life does not end when you are diagnosed. ALS for the most can be managed as a disability rather than a terminal illness.

For me the decline into paralysis and letting go of my wanted way of life was much more difficult than being paralyzed. With all of the challenges facing us, we must be proactive in our care. I imagine I have encountered just about every challenge ALS can dish out except being locked in. There were solutions available for every problem I faced, but I had to seek most of them out myself. You need to attend an ALS/MDA clinic or at least see an occupational therapist and a physical therapist at a rehabilitation hospital with a seating clinic for wheelchair fittings.

Adaptive equipment- I was so foolish early on and I thought if I used adaptive equipment I was giving into the disease. Please do repeat my mistake. Everything I have used has restored some degree of independence and improved qualify of life.

Feeding tubes- Everyone should get one at the first hint of swallowing or speech difficulty. Again, I was an idiot and postponed this almost too long, because of my foolish thinking. For those of you that have decided not to take any life prolonging measures, a feeding tube will do nothing to arrest the disease process. A feeding tube will greatly improve qualify of life and prevent hours of stress on your family and caregivers watching you choke. I deeply regret being so selfish and putting my family through that. I strongly recommend to only eat food through your feeding tube. If formula was so wonderful why doesn't the rest of the world without swallowing problems exist on Ensure and Boost? Doctors best argument for not eating food is the feeding tube will clog. That is a simple problem to solve. Demand prior to surgery at least a 20 french size feeding tube. I have never had a problem in 13 years and I am certain food is a major factor in my longevity.

Bi-PAP- Well, breathing with a bi-pap is like hanging your head out the car window going 90! Seriously, with a properly fitting comfortable mask or nasal pillow, a bi-pap can easily become second nature. Find a new doctor if your doctor recommends a c-pap. Again, a bi-pap will not arrest the disease process, but it will greatly improve qualify of life.

Ventilator- Deciding to go on the ventilator is a personal decision. Critical things to consider, rate of progression, family and situational finances and do you find enough enjoyment living with ALS. Your decision once on a vent is not permanent; the Supreme Court has ruled a patient can elect to terminate mechanical ventilation therapy.

Miracle cures, therapies and supplements, save your precious money, time and energy. I have seen many and waste money on a supplement years ago. Millions are spent every year attempting to cure and arrest ALS. News of a legitimate cure or therapy will spread like a wild fire. Hope is critical for our survival, but false hope can be more destructive than this disease.

Finally, ask for and accept help. Learn to laugh at yourself. Believe you can still make anything possible, because you can.

FIVE YEARS OF LIVING WITH ALS

By Chris Stammler

In my personal opinion I think family support and my deep faith have helped me through many rough times. In 2001 I was told by my doctor that I would be lucky if I lived two years. In the early days after diagnosis, I was very depressed and I felt like no matter what I did I was going to die so it didn't matter.

The doctor was wrong.  i have lived almost five years. I think the doctors need to understand what it is like to receive that death sentence. Not until I told myself I wasn't going to let this thing control my life did I see that I could live with this illness.  Then the more time that passed I realized I was still alive. I cherish every moment with my family. I know I wouldn't be here if it wasn't for God. My will to fight is very strong and my will to live is even stronger. I have two teenage sons. My oldest is going to graduate this year and my youngest is going to graduate next year. I live with my mom. My sister has taken the role of my caretaker. I have excellent support. I was only 33 when I was diagnosed. I was working 12 hour shifts I never thought anything was wrong, until I started tripping over nothing. Then I woke up one day and there it was staring me in the face. I believe that pals & CALS are the best, bravest and most caring people I have ever met. 

Resolved

I refuse to die
I choose to defy
Prognosis (poor)

I will see
Daughters
     Graduate
     Marry
     Grandchildren

I refuse to die
I choose to defy
Prognosis (guarded)

I must
     Love
     Help
     Work
     Dream
     Eat chocolate every day

I refuse to die
I choose to survive
Prognosis (good)

 

1. Be compassionate to yourself. If you are like me, your first reaction to being told you may have ALS is shock and fear. We all go through wild emotional swings when we hear such dreadful news. Allow yourself to go through denial, grief, anger, and whatever else you feel without criticizing yourself for it. It's natural and necessary for you to experience powerful emotions. Many feelings will arise again and again as ALS progresses.

This will pass, and being gentle with yourself is a big help.

2. Reach out to family and friends. Many people may want to help and not know how. Talking openly to a family member or friend about your situation will help both of you cope. Ask for assistance with preparing meals, running errands, doing household chores, or ask to be taken to the movies. Building a support network will help you and your primary caregiver.  Also, this allows family and friends to get involved.

3. Learn about ALS. Knowledge is power. ALS tends to make people feel powerless. Learning all you can about the disease, about supplements and drugs that might slow progression, and about current research, can help empower you. Sharing what you learn will help raise awareness about ALS and the need for more research money.

4. Do everything you can for your health. Improve your diet, quit smoking, take up yoga and/or meditation, practice positive visualization, get plenty of sleep, and work with your doctor to develop your own regimen of helpful vitamins. Every little effort will help you, both physically and mentally.

5. Take charge of your treatment. Pick your health care providers carefully. Remember, they work for you. Talk to your primary care provider and your neurologist about any vitamins and supplements you may want to take. Ask lots of questions. If they don't patiently and respectfully answer (or research) all of your questions, fire them and find someone else. Don't be passive about your treatment options. You are always in charge.

6. Develop a relationship with a major ALS center.  Centers and clinics associated with The ALS Association have a lot of experience with ALS. They take a multidisciplinary approach with ALS patients and can be helpful at every stage of the disease. The ALS clinical team is there every step of the way to provide expert medical care to people living with ALS. A list of ALS centers and clinics affiliated with The ALS Association can be found here.

7. Do things you have always wanted to do. Take that trip to Europe, spend more time with your family, go skydiving, write a book, or raft the Grand Canyon. Whatever it is, go ahead and do it. In a few months, you may no longer be able to do these activities.

8. Find ways to help others. One of the best ways you can help yourself is to help other people with ALS. Consider raising money for research, joining advocacy efforts, volunteering for clinical trials, attending support groups, and reaching out to others who need emotional support. Giving to others enriches your life as well as theirs.

9. Practice hopeful, positive thinking. Maintaining a positive attitude in the midst of trying circumstances takes practice, but it's worth it. Not only is your moment-to-moment experience improved, but experts agree that a positive attitude can improve your body's resistance to disease. Remaining hopeful helps me to enjoy my life, in each moment. In addition, a lot of promising research is being conducted in many different areas of investigation. Remember, a breakthrough could happen at any time.

10. Stay ahead of the curve. Get a wheelchair when walking difficulties begin, even though you can still walk. Get a feeding tube before you lose weight. Begin using augmentative communication aids before you need them. Get respiratory support by using a Bi PAP at night as soon as possible. By taking these and other steps early, you remain in control. No one with this disease regrets doing these things early; many regret waiting too long.