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You are absolutely correct Kathy. I am a bulbar pALS and continue to experience a very rapid progression of the disease. I have not experienced signs of depression because I accepted my fate from the beginning and know that feeling depressed will only make things worse, not better. It is what it is, no point whining about it. I prefer to focus my limited energy on getting through every day as best I can with the love, help and support of my wife, family and friends. That said, I often get frustrated when I cannot communicate my needs or desires to anyone when I need immediate assistance. I can barely type with my remaining functional hand but when I’m away from my computer all communication is lost. Still, I’m staying focused and getting by as best I can but also hope this unbearable pain and suffering will end soon. More weeks, months, or, Heaven forbid, years more of this would be pure hell.

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Right on Richard. A Lack of Support says it all. Don’t count on any improvement during our limited lifetime.

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Hi Cindy. Sorry to hear about the terrible pain you are now experiencing. I am a year into my diagnosis and am progressing very quickly, having already lost use of both legs and all of my left side. I cannot speak and have a difficult time eating and swallowing. My right arm/hand barely function so I can type using the ‘hunt ‘n peck’ method, but I can tell that will soon be impossible, sad to say. So far the only pain I’ve experienced is with my neck and back. I’ve tried different types of pain relief medicine but they all cause constipation so I quit using them. I hope you can find lasting pain relief soon. Living in constant pain is not worth living as far as I’m concerned. As I’ve said many times before, I’d rather ‘leave the building’ sooner than later. It’s only going to get worse. God bless, young lady!

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Hi Richard. I agree with you 100%. I too am more concerned with quality of life than life expectancy. I understand that others may have a different opinion and that’s okay. But for me, if there is zero quality of life then there is no point suffering with this horrible condition any longer than I have to. I’ll be 76 next month and had a great life. Now that ALS has destroyed any hope of getting better, I’m ready to ‘leave the building’ the sooner the better. You expressed my thoughts perfectly. Thanks for your post.

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I agree that the quest to live longer with ALS is pointless if the quality of life is zero. Not only does one with advanced ALS have to suffer with the disease as it continues to worsen day by day, but the burden others have to endure caring for your every need 24/7 is cruel. There is a huge difference between ‘life’ and living. I am well into my second year with this horrible disease, wheelchair bound and 100% dependent on my wife and caregiver for everything, and I mean everything. It only gets worse with each passing day with no hope of an effective treatment in sight, let alone a cure. Why would anyone want to prolong the inevitable pain and suffering any longer than necessary? Not me. It is what it is. I would prefer to end it sooner than later.

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I was diagnosed with ALS one year ago (March 2020) but had obvious symptoms six months earlier when I noticed slight difficulty speaking and a small, but noticeable loss of muscle in my left arm and hand. I did some research and realized that it was most likely ALS and so began a four-month long process involving four different specialists and every medical test known to man. Finally a neurologist confirmed what I had already suspected – ALS. My wife had no idea that I suspected anything so she took it very hard when we were given the news while I took it in stride, knowing the obvious. At first I spent countless hours reading everything I could get my hands on about the disease and eventually came to the realization that there was nothing anyone could do about it. Even the neurologist said I had 24 to 36 months to live, and that my future was going to be extremely difficult as the disease progressed, which I already knew. He told me about one medicine that would, at best, extend my life by 60 days, but said it came with significant side effects and went so far as to not recommend it. I decided not to bother taking it. Why prolong the terrible suffering any longer than I have to? Makes no sense to me. I spend much of my time communicating with relatives and friends via e-mail using my ‘good’ right hand as I can no longer speak. I follow ALS patients here on the Forum often and learn how they manage to cope from day to day. Some comments are interesting and helpful about how they’re dealing with their lives. I’ve learned more from them than from most published articles on the subject. I think it’s a waste of time constantly reading about ALS trials, potential new treatment options or any possible cures on the horizon. If they haven’t found an effective treatment, let alone a cure, in over 100 years, I seriously doubt they’ll suddenly find any during my limited lifetime. I live in the present one day at a time with my loving wife and family, and frequent visits from my many friends. I get online every day and watch TV a lot while waiting for the elevator we’re having installed to be completed. We live across the street from the ocean in Haleiwa, Hawaii with a great view of the ocean. I miss going outside to enjoy our beautiful weather and environment. We live in a flood zone that requires our living space be 10 feet above sea level. As a result, I can’t get up and down the stairs unless someone carries me, something I try not to bother anyone with. I spend nearly all of my time in the house. Hopefully, when the elevator is completed, I’ll spend much of my remaining days outside in my electric wheelchair, enjoying the beautiful Hawaii weather and awesome surroundings.

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In response to a recent post about living with this dreadful disease, I realize everyone deals with it in their own way and that is how it should be. Most of the posts I see talk about hope for a cure, but I’m a realist. Every day I sit at my computer and review the latest information I can find about ALS in general, including potential new effective treatments (still nothing in sight), current surveys, and input from ALS patients from around the world. The other day I noticed a recent survey that reveals military vets with ALS are more than four times as likely to commit suicide than veterans who do not have the disease. I’m not surprised. This disease destroys any hope of recovery, leaving patients with near zero ‘quality of life.’ Why would anyone want to continue living in such extreme pain and suffering, knowing that it will only get worse with each passing day? I have been suffering with ALS for over a year now with the debilitation and aggravation that comes with. Personally, I would prefer to die as soon as possible, peacefully in my sleep, hopefully. This hideous disease continues to destroy every aspect of my body, forcing me to rely on others to care for my every need, a burden they do not deserve and should not have to endure. I am not ‘living,’ I’m merely existing, sitting in my chair day after day waiting to die. Why prolong the inevitable in this horrible condition? Suicide is not an option for me, but I would be happier and much better off if I died peacefully in my sleep tonight. I understand how others have a completely opposite point of view and strive to live with this terrible disease as long as possible, hoping against all hope that a cure may be just around the corner. I admire their determination and resolve and wish them well, but this ‘life,’ such as it is, is not for me. I suspect I am not the only ALS patient thinking this way. Meanwhile, I’ll ‘hang in there’ as long as I can for the sake of my loved ones and continue to make the best of it, but in truth I’m tired and ready to let go, the sooner the better.

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Hi Lisa. Thank you for your thoughtful response. While it sounds like you have ALS, I’m sure any neurologist can make a definitive diagnosis after conducting a few tests. In my case, the constant loss of muscle tissue follows no obvious pattern. I can sense it happening to various parts of my body, the latest being in my neck and back. I already have an electric wheelchair and not a moment too soon. I suspect within another week or two I will no longer be ale to stand, even with a cane or walker. With my new chair at least I’ll be able to ride around outside and enjoy this beautiful Hawaii Island my wife and I call home. Last year was not a good year for me health-wise, but 2021 will only be worse. I suspect any reasonably effective treatment for ALS is decades away and a cure is but a dream. I sincerely hope your doctors find that you have something other than ALS, something they can treat. I wish you all the best and will continue to watch for your posts on this forum. God bless!

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Hi Lisa. I experienced just what you describe before I was diagnosed with ALS last March. Like you, I’ve always been an extremely fit person, so I noticed the loss of muscle tissue on my left side and obvious signs of atrophy right away. My right side remained as strong as ever, but arms and hands on my left side rapidly became weaker to the point where they no longer function. Can’t even raise my left arm above my waist or pick up a pencil with my left hand now. Thankfully, I’m right-handed. So far the loss of muscle on my right side, while definitely getting weaker, isn’t progressing nearly as quickly as my left side did. My neurologist advised me not to exercise, explaining that muscle tissue will continue to waste away no matter what. He went on to explain that remaining muscles have to work harder to make up for tissue already gone. As we all know, ALS responds differently from one person to the next. There are so many unknown variables. After much research about the disease I accepted what was happening to me and decided early on that it is what it is with no realistic hope of slowing it down, let alone medical science finding a cure in my lifetime. I will not accept any ‘treatment’ or participate in any trials because of the unknowns. While some patients hang on and hope for a cure (and I honestly wish them well), I’m going to ride it out with the hope that my life ends sooner than later. Struggling to get by from one day to the next with this dreadful disease is not living to me, it’s merely existing. The pain and suffering I must endure every single day, not to mention the heavy burden caring for me others must carry, is not worth it.

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In March of 2020 at the age of 75 I was diagnosed with ALS after months of tests and exams by four different specialists. I had been a very healthy, active physically fit man all my life, so much so that my primary doctor always marveled that I was the healthiest 75 year-old patient she ever met. The disease came on overnight, when awoke and noticed a slight speaking problem, not slurring speech, but rather slight difficulty pronouncing certain words. Months later, when I was given the diagnosis, my wife immediately cried, devastated beyond words, and while I felt so bad for her I myself did not experience a similar response. Instead, I immediately accepted the diagnoses and knew that I was in for a long and difficult journey until the end. It was hard to take, but I knew that grief and sadness would do nothing to change the situation and would only make things worse as the days, weeks and months progressed (I was given 24 to 36 months, tops). The fact that my neurologist explained that there are no reasonably effective treatment options available only made me determined to make the most of every day I have left with my loving wife. At the time I could walk and talk reasonably well, but within weeks the disease proceeded on a rapid pace. Today I cannot speak other than utter a few meaningless sounds, I can eat some solid food (must be soft and not dry) but it’s difficult to swallow and very messy. I need a cane to move about, but I can tell that I am only a few weeks from a wheelchair, something I am not looking forward to but know it has to be. I also know that I am only a few weeks away from needing a fulltime caregiver as I’m barely able to bathe or groom myself. My wife shaved me for the first time this morning with an electric shaver (not bad!). Thank God my loving, caring wife can help me get through it all and make life, such as it is, as comfortable as possible under the circumstances. I do not feel sadness, self-pity or experience any depression because I know none of it will help in any way. I regret that I can no longer drive my sports car convertible around this beautiful Island (Oahu, Hawaii) or swim in the awesome beach across the street, but I relish the many wonderful moments of the past with my wife when I was healthy and physically fit. I have no desire to try various experimental treatments or take what few medical options are out there, but rather I want to just ride it out and hopefully pass away peacefully in my sleep when my time is up. Terminal means terminal, and I fully accept it. I have settled all personal obligations, leaving my wife in reasonably good financial status, and have made preparations for my funeral. I understand that everyone who is diagnosed with any terminal disease finds their own way to cope with it and that’s as it should be. Since there is no reasonably effective way to treat, cure or even slow down ALS, I accept it for what it is and am thankful for the wonderful life I’ve lived. God bless.

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Hi Anne. I too experienced uncontrolled drooling and total loss of speech just a few months after I was diagnosed with bulbar ALS in March 2020. Like you, I was embarrassed whenever I drooled and often didn’t realize it until it dripped down my chin. Now I wear a bib, even at night. But the good news is my doctor prescribed HYOSCYAMINE SULFATE 0.125 MG SL TAB, which I take dissolved in a small cup of coffee three times a day (don’t even notice it). It really works well. I get minimal secretions after taking it. I began to lose my speaking ability early on. It started with mispronouncing certain words, eventually my voice pitch changed dramatically and finally all I can make are moans and groans. Taking videos now while you can is a great idea. Remember, things that you can do today will not be possible in the days, weeks and months ahead. That’s the nature of the beast. If you are able to word bank, you need to get on it right away before it is too late. I too have difficulty keeping my head upright. Been like that for months now. It’s extremely painful when my head moves in either direction. I take a low dose of morphine twice a day and it pretty much eliminates the pain (Hospice provides the morphine). Hope this information helps. I wish you the very best Anne.

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Good Lord, setting a goal like that is merely a weak attempt to fool people into believing that making ALS ‘livable’ nine years from now is attainable when we all know it’s nothing but pie in the sky nonsense. Nothing has been done in the last 100 years to come up with anything close to reaching that imaginary goal, so what makes them think that will all change by 2030? How’s the ‘treatment’ you’re getting these days working for you? They can set all the lofty goals they want, but ALS patients like us need and deserve ‘effective treatment’ now. Realistically, there is nothing on the horizon for us. The last thing we need are more false promises. God bless everyone who suffers every day with this horrible disease.

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Hi Russell. You may be jumping the gun on the possible diagnosis. While there is definitely something going on, it may or not be early symptoms of ALS. When I first experienced symptoms a year ago I noticed a weakening of my left side, plus a very slight problem speaking. I also began to feel tiny little twitches on my left arm and leg, which slowly increased and became more pronounced over the following weeks and months. After seeing four different specialists and having every medical exam known to man, I was finally sent to a neurologist who instantly suspected ALS but ordered a special exam (can’t remember the long name) that confirmed his suspicion. I hope and pray that you do not have ALS, but some other medical condition instead that can be effectively treated, if not cured. Let’s not jump to conclusions and hope for the best, my Friend.

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I agree Astrid. Surely there must be some form of assistance to enable at least some limited use of a limb lost to ALS. I’m surprised there isn’t anything available, at least nothing that I’m aware of. Lost total use of my left arm and leg months ago. Would be great to have at least some use of both. I know I’m losing use of my right side too. Not looking forward to that!

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Hi Richard. I’m hangin’ in there day by day, but I see nothing but quickly fading stars out there and know they will all eventually fade away into total darkness while I sit here and continue to suffer with this dreadful disease. I see no logical reason to prolong the inevitable. The sooner I leave the building, the better.

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Thanks Victor. I agree. Without any ‘quality of life’ what is there? Nothing but suffering in misery for months or years until you die? Makes no sense to me. I’m ready to go right now.

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Hi Kathy. Yes, all we can do is try to get through every day as comfortably as possible and be thankful for loved ones and caregivers who do their best to help us day in and day out. God bless them. I don’t see any reason to hang on to false hope when we all know that our future will only bring more pain, suffering and misery. That’s no ‘life’ for me.

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Hi Lisa. Hopefully you’ll be able to follow your dream and travel to Hawaii before your illness gets any worse. I wish I would have traveled more while I could still walk, but the pandemic and all the confusing lock-down restrictions made it nearly impossible to enjoy visits with family and friends on the mainland. I was born and raised in Maine. Joined the Air Force after graduating from high school and eventually was assigned to a secret joint military installation here on the Island of Oahu. I loved living here so much that I never went back to the snow and cold winters of Maine after my discharge from the Air Force. We bought a beautiful home across the street from a spectacular semi-private beach where my three sons learned how to swim and surf before they were five years old. I have no doubt you would love it here. Please let us know when you finally get diagnosed with your illness. I’m hoping it isn’t ALS, but rather something else that offers effective treatment options for you. Wish you nothing but the best for the new year.