ALS News Today Forums logo
  • Home
  • About Our Forums
  • Forums
  • Groups
  • Members
  • Activity
  • Search
  • What can we help you find today?

Allen Lewis

Home Members Allen Lewis
show less show more
Profile picture of Allen Lewis

@allenlewis

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. Thanks View
  • Activity
  • Profile
  • Friends 0
  • Groups 0
  • Forums
  • Articles
  • Personal
  • Mentions
  • Favorites
  • Friends
  • Groups
  • Profile picture of Allen Lewis

    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.
    Thanks

  • Profile picture of Allen Lewis

    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]

  • Profile picture of Allen Lewis

    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]

  • Profile picture of Allen Lewis

    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]

    • Profile picture of Amanda
      Amanda replied 2 years, 1 month ago

      Allen, that is an awesome share!! I love the way you two support each other even in the face of challenges!

  • Profile picture of Allen Lewis

    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

    View Conversation
  • Profile picture of Allen Lewis

    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.

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 2 years, 5 months ago

      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]

      • Profile picture of Allen Lewis
        Allen Lewis replied 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

  • Profile picture of Allen Lewis

    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]

  • Profile picture of Allen Lewis

    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]

  • Profile picture of Allen Lewis

    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]

  • Profile picture of Allen Lewis

    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.

  • Profile picture of Allen Lewis

    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

  • Profile picture of Allen Lewis

    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]

  • Profile picture of Allen Lewis

    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]

  • Profile picture of Allen Lewis

    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]

    View Conversation
  • Profile picture of Allen Lewis

    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]

  • Profile picture of Allen Lewis

    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]

  • Profile picture of Allen Lewis

    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]

  • Profile picture of Allen Lewis

    Allen Lewis became a registered member 2 years, 11 months ago

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 2 years, 11 months ago

      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]

    • Profile picture of Amanda
      Amanda replied 2 years, 11 months ago

      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]

      • Profile picture of Allen Lewis
        Allen Lewis replied 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]

Profile Photo Steve Hoffman Profile Photo Alexandra Marroquin

Register

Search forums

Generic selectors
Exact matches only
Search in title
Search in content
Post Type Selectors
Search in posts
Search in pages
Search in posts
Search in pages
Search in posts
Search in pages
Search in posts
Search in pages
Search in posts
Search in pages
Search in posts
Search in pages

Who’s Online

There are no users currently online

Recent Replies

  • Organ donation and ALS
  • Relyvrio
  • Relyvrio
  • Relyvrio
  • Does fungus cause ALS!

Members

Newest | Active | Popular
  • Profile picture of Alan Larrivee
    Alan Larrivee
    Active 1 hour, 52 minutes ago
  • Profile picture of Andrew Darke
    Andrew Darke
    Active 4 hours, 56 minutes ago
  • Profile picture of Rich
    Rich
    Active 6 hours, 26 minutes ago
  • Profile picture of LORRAINE N BERGKVIST
    LORRAINE N BERGKVIST
    Active 8 hours, 27 minutes ago
  • Profile picture of Sigmund Lundanes
    Sigmund Lundanes
    Active 9 hours, 38 minutes ago

Forums

  • Coronavirus (COVID-19) and ALS
  • In Loving Memory
  • Living With ALS
  • ALS Awareness Month
  • Flash Briefings
  • A​ ​Forum​ ​for​ ​ALS ​Caregivers​
  • Diagnosis​ ​Information​ ​and​ ​General​ ​Questions
  • Mobility Aides, Assistive Technology and Medical Equipment
  • ALS ​and​ ​Relationships
  • Research Topics
  • ALS Awareness and Advocacy
  • ALS News
  • ALS In The Media
  • Using our Forums
  • Most popular topics
  • Topics with no replies

ALS News Today Forums

BioNews Services, LLC
3 W Garden St
Suite 700
Pensacola, FL 32502
Email: [email protected]
Phone: +1-800-936-1363
  • Email Forum Support
  • Publishing Team
  • Leadership
  • Our Culture
  • Corrections Policy
  • Terms of Service
  • Privacy Policy
  • Careers
  • Contact Us
  • Advertising Policy

ALS News Today Forums is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

BioNews, Inc.

3 W Garden St
Suite 700
Pensacola, FL 32502
Website: bionews.com
Email: [email protected]
Phone: 1-800-936-1363

  • Email Forum Support
  • Publishing Team
  • Leadership
  • Our Culture
  • Corrections Policy
  • Terms of Service
  • Privacy Policy
  • Careers
  • Contact Us
  • Advertising Policy
Disclaimer

This site is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Copyright © 2017-2023 All rights reserved.

©2023 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending

Log in with your credentials

or     Create an account

Lost your password?

Forgot your details?

I remember my details

Create Account