@allenlewis
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Allen Lewis posted an update 1 year, 9 months ago
My wife heard about a Chinese doctor who claimed success in curing many diseases, including of course ALS, with cannabis oil. She is talking about contacting this quack and arranging an appointment. Please, will someone give me something to say to her that will nip this lunacy in the bud.
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Allen Lewis started the topic A cure for ALS in the forum Research Topics 2 years ago
If Mark Zuckerberg, Jeff Bezos or Bill Gates, or one of their loved ones, contracted ALS today do you think we’d see a cure in the foreseeable future? The sad truth is that there are simply not enough of us potential customers to justify the cost of finding a cure, no hope of a return on investment. All we’ve got is a pathetic little pill that…[Read more]
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Allen Lewis replied to the topic How do you prepare for the “not so ordinary” emergency? in the forum Living With ALS 2 years, 1 month ago
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…[Read more]
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Allen Lewis replied to the topic How do you prepare for the “not so ordinary” emergency? in the forum Living With ALS 2 years, 1 month ago
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…[Read more]
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Allen Lewis posted a new activity comment 2 years, 5 months ago
Thank you, Dagmar. I’ve already contacted the Social Security division of the US Embassy in Manila which handles SS issues for US citizens living in southeast Asia. Awaiting response. Allen
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Allen Lewis posted an update 2 years, 5 months ago
I live abroad, receive Social Security benefits and was diagnosed with ALS about a year ago. Do I qualify for SSDI benefits, and how do I apply.
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Allen, it looks like you can…but it always pays to contact the SS office to ask. Here is a link that addresses US citizens living abroad:…[Read more]
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Thank you, Dagmar. I’ve already contacted the Social Security division of the US Embassy in Manila which handles SS issues for US citizens living in southeast Asia. Awaiting response. Allen
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Allen Lewis posted an update 2 years, 5 months ago
Question: Has anyone had any first-hand experience with stem cell therapy for ALS? There are a couple of new, high-tech and very pricy clinics in the city where I live. The have lavish advertising on the Internet making wild claims, mostly about anti-aging and youth restoration, but also about slowing and in some case reversing the symptoms of…[Read more]
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Allen Lewis replied to the topic No cure for ALS in sight in the forum Living With ALS 2 years, 5 months ago
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…[Read more]
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Allen Lewis replied to the topic Rilozole experience? in the forum A Forum for ALS Caregivers 2 years, 8 months ago
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…[Read more]
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Allen Lewis replied to the topic Rilozole experience? in the forum A Forum for ALS Caregivers 2 years, 10 months ago
I have ALS-related speech issues. Don’t know what “banking my voice” means.
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Allen Lewis replied to the topic Rilozole experience? in the forum A Forum for ALS Caregivers 2 years, 10 months ago
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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Allen Lewis replied to the topic Rilozole experience? in the forum A Forum for ALS Caregivers 2 years, 10 months ago
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…[Read more]
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Allen Lewis replied to the topic Do you have any feedback about ways we might be able to improve our forums? in the forum Using our Forums 2 years, 10 months ago
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…[Read more]
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Allen Lewis posted a new activity comment 2 years, 11 months ago
Hi Amanda
Thanks for your warm welcome to the forum. I’m new here. I was (sort of) diagnosed with ALS about a month ago, pretty much confirmed by electromyography and nerve conducton tests two weeks ago. Then two days ago I had yet more tests including a cervical spine MRI, lung function test and blood tests I’d never heard that will take…[Read more] -
Allen Lewis replied to the topic Information or results on RILUZOLE in the forum Research Topics 2 years, 11 months ago
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 extr…[Read more]
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Allen Lewis replied to the topic Information or results on RILUZOLE in the forum Research Topics 2 years, 11 months ago
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…[Read more]
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Allen Lewis replied to the topic Information or results on RILUZOLE in the forum Research Topics 2 years, 11 months ago
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…[Read more]
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Allen Lewis became a registered member 2 years, 11 months ago
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Hello Allen,
Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. If you have any questions, concerns, or even…[Read more]
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Hello Allen, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost m…[Read more]
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Hi Amanda
Thanks for your warm welcome to the forum. I’m new here. I was (sort of) diagnosed with ALS about a month ago, pretty much confirmed by electromyography and nerve conducton tests two weeks ago. Then two days ago I had yet more tests including a cervical spine MRI, lung function test and blood tests I’d never heard that will take…[Read more]
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