allen-lewis
Forum Replies Created
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At one-year plus from als diagnosis I still have virtually full use of my limbs, can walk, drive etc. without problem. But I get cold sweats behind the wheel just imagining an accident or a traffic stop, because I CAN’T FRIGGING TALK! My mouth has ceased to function. (I believe it’s called bulbar onset). When I open my mouth to speak what comes out is saliva and incomprehensible drivel. My solution: I take my wife almost everywhere I want or need to go. And I take her anywhere she needs to go. We’re both long retired so she doesn’t mind, and appreciates the chauffeur service since she doesn’t drive. And, thanks to unspoken signals, signs and body language accrued over 36 years of marriage she understands about 90 percent of what I’m trying to say. So, that’s my emergency prep.
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The reason no cure or treatment for ALS is in sight, and won’t be for a long time, if ever, is that it’s rare and non-contagious. The disease is yours and yours alone and you couldn’t give it away to your worst enemy if you wanted to. Malaria? Yellow fever? Smallpox? Typhoid? All now curable or controlled by vaccines. Even Covid 19. A vaccine formulated and already being distributed…in under ONE YEAR. Why? Obviously, those were pandemic-grade diseases with enormous political capital to reap, not to mention the potential to wipe out huge swaths of the human race. ALS? Most politicians have never even heard of it, let alone care about a cure. No, we are on our own, to live – well or less well – and then to die.
Allen
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PS to Duane
That slipped right by me, but you mentioned a cough-assist device to help clear your throat. What is that exactly? Sometimes my throat gets so clogged with phlegm that it takes me several minutes of hacking and coughing to clear it. Drinking hot water with lemon juice helps. But I didn’t know there was a device for that. Thanks, Allen
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The first thing I zeroed in on after my ALS diagnosis was how to end my life once those horrible, crippling symptoms began to manifest themselves to the point where I would be totally helpless and dependent on others to eat, dress, shower, use the toilet etc. I have seen countless YouTube videos of agonized sufferers documenting those travails and absolutely swore to myself I would never allow myself to die like that, paralyzed, with tubes in my nose, down my throat, in my stomach. The only encouraging news I’ve had was from the first neurologist I saw, who I recently asked if there were any way she could procure a supply of Phenobarbitol for me, off the books of course. Actually what I first asked was if she knew a veterinarian, who would have a supply for animal euthanasia. Because phenobarbitol as a sleeping pill and anesthetic is pretty much out of general use today, not available in hospitals or the large chain pharmacies in malls. And her answer totally blew me away. You don’t need a prescription for phenobarbitol in this country, she said. It’s pretty much out of use for humans as a sleeping pill. But I’m pretty sure you can find it in some of the small, independent drug stores out in the neighborhoods. Voila! My next project, while I can still drive.
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I was officially diagnosed with bulbar onset ALS seven months ago. I say “officially” because in retrospect the symptoms began showing probably a year ago: at first a slight lisp, then a slight slurring of certain words and sounds which became too noticeable to ignore. I still drive and am abundantly thankful for that. Driving has always been and remains one of my great sources of relaxation, pleasure and independence. My speech continues to deteriorate to the point that only my wife can understand me. Fortunately we live in a country where I do not speak the language and English is a far second, so a few words at the gas station and coffee shop are all that are required of me, and I can still manage that. As to driving ability, I honestly think I am a better driver than before the diagnosis, much more vigilant, careful, ever watchful for changes. But so far so good, as they say. With my 79th birthday just around the corner, the only real symptoms I’m experiencing are deteriorating speech, difficulty chewing and manipulating food in my mouth, and a bountiful flow of saliva which is increasingly difficult to keep in my mouth. I wear a hand towel draped around my neck as part of my standard attire and find myself constantly wiping my mouth. I am also experiencing a profound general fatigue and weakness later in the day and evening, which I attribute to the combined side effects of Rilutek and hormone shots I get for prostate cancer. Early morning walks with my wife are a high point of my day. That, and driving…anywhere, really..are I think what’s keeping my spirits reasonably upbeat, although the elephant in the room of my mind is always what’s in store in the near future, and the awful realization that I will gradually lose my ability to care for myself and become an unbearable burden on my wife, who is younger than me but not much, already in her 70s. I am seriously considering at what point it would be time to just call it quits and have secretly made preparations for that. I have no intention of ending my days in a powered wheelchair or hospital bed with tubes down my throat and in my stomach. I have witnessed people close to us end their lives like that over years. That’s not for me.
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Thanks to all for sharing. For what it’s worth, I honestly can’t put my extreme fatigue squarely on Riluzole. I also have prostate cancer and get a three-month Enantone shot, a major side effect of which is…wait for it…extreme fatigue. So I guess what I’m experiencing is kind of a perfect storm of side effects. To this erudite observation my neurologist responds with a shrug and “yeah, probably.” Should I just quit all the meds and take up rock climbing? My wife says “don’t you dare!” I have to say, though, that I’m feeling a bit lucky that this ASL thing has waited until nearly my 80th year to strike. My attitude would surely have been much different if it had been 40 years ago.
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Been taking Riluzole about four months and have noticed a bone-crushing fatigue that sets in later in the day. I try to get in a 30-minute walk around dawn when my energy level is highest, followed by some light weight trainiing and if there’s any energy left some time on a stationary bike. But fatigue and sleepiness later in the day is really debilitating. I can’t pass up a bed or sofa without lying down for a nap. I even take a nap BEFORE retiring for the night. Anyone else on this drug experiencing similar fatigue?
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I have ALS-related speech issues. Don’t know what “banking my voice” means.
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Dagmar — I’m just getting the hang of swallowing, and throat clearing, before attempting to speak. I’ll give lozenges a try. Thanks. – Allen
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I’m in the early stages of ALS, having been “diagnosed” a month ago through systematic elimination of all other possible causes of symptoms that began about four months ago with slurred speech and constantly wet and drippy lips. I just started my second month on Riluzole yesterday. Funny thing: since beginning Riluzole the saliva problem has progressed from mildly annoying to a right pain in the butt. I’ll be trying to talk or eat or just sitting at my laptop and a big drop of saliva will just pop out of my mouth onto my chin, chest, lap, table, floor, whatever. I need to be consciously aware and as I feel it accumulating inside my lower lip suck it back into my mouth and tighten my lips. Not a problem at all when I’m lying on my back, only sitting up. Neurologist says it’s just one of the symptoms and drugs might help but cause other side effects. I know in comparison to other stories I’ve heard this is hardly worth bitching about. I still walk, drive etc without impediment. Anyone else have this saliva problem?
Thanks, Allen -
Well, yes, I have some feedback. I’m having trouble navigating your site and forums, undoubtedly to my lack of dexterity and technical knowhow. I just today read a very interesting article by Rick Jobus which touched in part on the progression of his symptoms. And I am keenly interested in the time line he experienced, eg-occasional slurring of speech to unintelligble babbling. How much time? Days? Weeks? Months? From unassisted limping to cane to walker to wheel chair to hospital bed etc. How much time? My own symptoms now consist of very noticeable slurring and an abundance of saliva, but no noticeable muscular impediment. No problem walking, driving, etc. But I have no illusions about what’s ahead. I would just like to get some idea how much time I have in each phase. When I pose these questions at the end of his article where it says “ADD COMMENT” nothing seems to happen. What am I doing wrong?
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Dagmar
Thanks so much for sharing that. My ALS seems to have started at the opposite end of the body from yours, in the mouth – slurred speech and drippy saliva. I think it’s what they call bulbar onset. Not a huge problem yet. My wife says she understands me fine, and that’s all that matters. I’m watching closely for any involvement of extremities but so far so good. I still walk, exercise and drive without problem and am hugely thankful for that. I will definitely start Riluzole this week at my next followup with the neurologist, largely based on your experience. I look forward to reading more of your blog, your articles and your book. Take care, and thanks again.
Allen
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Hi Dagmar
Thank you so much for your comments on Riluzole and your history taking it. And please don’t apologize for any “long-winded” reply. You’ve been more informative and more encouraging than any of the doctors I’ve seen. The last one concluded by saying something like there was clinically a two-to-three year life expectancy with ALS and I could try Riluzole if I wanted to. So, 10 years, wow, that’s a different ball park, isn’t it?
I wonder if I could ask, without being too invasive, what are your symptoms, what is your condition today after 10 years on Riluzole? And what sort of time-line did they progress along? What physical limitations are you living with? Do you use a walker, a wheel chair etc. How is your speech? How self-sufficient are you? How mobile? Can you drive?
I know these are terribly personal questions to put to a stranger, and I apologize. But I really have no one else to ask. Everything else I’ve read is anecdotal. I need to make a decision on Riluzole next week.
Thanks again. Really!
Allen
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Hi Rick
Thanks for your post. I’m new here and sorry to say I can’t offer any info on Riluzole since that, in fact, is what I’m seeking myself. You said your neurologist suggested the drug but I don’t think you said whether or not you are taking it. I was only diagnosed with ALS two weeks ago and am still in kind of shock, but in retrospect I think my symptoms began nearly a year ago when I first began to notice a slight lisp in my speech. It wasn’t until a couple of months ago that this progressed to a noticeable and annoying slurring of speech and saliva dripping from my mouth. My doctor sent me straight to a neurologist who ordered a brain MRI which showed nothing remarkable. She sent me to yet another neurologist at a larger hospital, who did a whole battery of electrical nerve tests and told me it was in all probability ALS. But he wants to do a cervical spine MRI and some more blood tests to rule out other causes. He said Riluzole was an FDA-approved treatment option that might slow progression of symptoms, but he was vague and non-committal about its efficacity. To take it or not was up to me, which is what you really love to hear from a doctor. I’m booked for the MRI and blood work on July 4 (no, I do not live in the US), at which time I need to decide on the Riluzome. Meanwhile, the only symptoms I’m experiencing, other than general fatigue and sleepiness, are the speech and saliva issues. So, I’m still curious as to whether you are actually taking Riluzole, for how long, and what if anything you’ve noticed. Thanks much for your help.
Allen
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Hi Dagmar
I read through your post a few times and am not 100% sure whether it’s you or your husband who’s doing the driving. If, after living with als for 10-something years (am I correct there?) you’re still able to drive, well, that’s very encouraging. At 79 years driving has become very meaningful for me since it’s really the only physical thing I can still do well, aside from walking. I feel curiously calm, comfortable and at ease behind the wheel, even for short drives to the grocery or pharmacy. And frankly I’m not sure which way I would go if given the choice between driving and talking.
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Thanks, Rich. I’ll give it a try.
Allen -
Duane
Thanks much for the tips. I checked out the T-70 on the web and I don’t think it’s for me. Actually, I think we are talking about two different problems. The T-70 is designed to clear mucus from the lungs and bronchia. That’s not my problem. I have been seeing a respiratory specialist who told me about 12 years ago that I have a mild case of COPD and she checks me regularly and says my lungs are reasonably clear. When I occasionally get a drop of liquid or a crumb of food down there I can usually clear it with a few brisk coughs. My problem is the other tube, the one that does go to the stomach and, in my case, seems to get coated regularly with thick mucus which I deal with by vigorously clearing my throat in the time-tested, noisy and attention-getting manner. Usually, a mug of hot water with lemon or lime juice seems to thin this mucus and makes it easier to clear. -
Hello Duane
Your comments were encouraging and I appreciate them. Thank you. I totally agree about the gruesome videos and I’m so done looking at them. Thing is, I have a real life picture in my mind of two family members, inlaws, stroke victims, who were left totally immobile and paralyzed but conscious and kept alive by artificial means for YEARS. Their wives, for religious or ethical reasons, refused doctors’ subtle and repeated hints that it might be time to just let go. And I swore to myself – and to my wife – that I would never allow my life to end like that. We both have living wills, but now, a year on from my ALS diagnosis, I want more concrete assurance that I will have control over the how, when and where when the time comes. So far my symptoms are limited to slurred speech and drooling saliva. I still walk and drive without problem. But my neurologist has made clear to expect worse down the road and I’m waiting for the other shoe to fall. The speech impediment is frustrating. Talking on the phone with customer service is a bitch. But my wife can understand me, so I can live with that for now. I’m gobbling Rilutek pills for whatever good they might be doing. My research has turned up a couple of viable life-ending options, relatively simple, painless and not requiring much physical strength or dexterity, and I’m comforted knowing they are there should the time come. Thanks again for your thoughts. Fourteen years, wow! That’s a lot more than they promised me.
Allen