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

Alan Larrivee

Home Members Alan Larrivee
show less show more
Profile picture of Alan Larrivee

@ajlarriveegmail-com

  • Activity
  • Profile
  • Friends 1
  • Forums
  • Articles
  • Personal
  • Mentions
  • Favorites
  • Friends
  • Profile picture of Alan Larrivee

    Alan Larrivee replied to the topic artificial voice/speech equipment in the forum Mobility Aides, Assistive Technology and Medical Equipment 3 days, 7 hours ago

    Hi

    this may not be the best place but I can’t find it anywhere

    my speech is getting worse. Slow and sometimes slurred. Don’t like talking.

    It was recommended that I have a card with me that states I have have ALS and it affects my speech. (In case I get pulled over by the police .

    Does anyone know more or how have other people handled this issue?

  • Profile picture of Alan Larrivee

    Alan Larrivee replied to the topic artificial voice/speech equipment in the forum Mobility Aides, Assistive Technology and Medical Equipment 3 days, 7 hours ago

    There is a free app I use on my iPad called Notability. I can use my finger or a stylus to draw words.

    Its simple to learn and use and very effective.

  • Profile picture of Alan Larrivee

    Alan Larrivee replied to the topic Which ALS-related science, research, etc. topic is on your radar right now? in the forum Research Topics 3 days, 21 hours ago

    Joined A Phase 2a Study of TPN-101 in Patients with C9ORF72 .

    Had to promise not to use any of the other drugs. Fair enough. They only promised a slight delay in symptoms.

    maybe TPN-101 will turn out to no better but I feel like maybe I’m helping the science move forward.

  • Profile picture of Alan Larrivee

    Alan Larrivee replied to the topic Newly diagnosed? What do you want to know right now? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 month, 1 week ago

    Hey Jerry

    you caught my eye with Nuedexta .

    Are you saying you take it for Mucas? I can’t find much information.

    i would love to know more

  • Profile picture of Alan Larrivee

    Alan Larrivee replied to the topic Relyvrio in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 month, 1 week ago

    Folks paying 700 a month, 8,000 a month. 22,000 a year. A drug that costs 150,00 a year??? All this to delay the inevitable.

    insurance companies making medical decisions.

    imagine what the price would be if they had a cure

    I don’t want to bankrupt the people I leave behind.

    yes, I am frustrated

  • Profile picture of Alan Larrivee

    Alan Larrivee replied to the topic Loose bowel movements in the forum Living With ALS 1 month, 3 weeks ago

    thank you

  • Profile picture of Alan Larrivee

    Alan Larrivee replied to the topic Loose bowel movements in the forum Living With ALS 1 month, 3 weeks ago

    Not loss of appetite but has anyone else been having an issue with keeping food down?

    a lot of times now after eating if I bend over I come close to losing it. Sometimes just turning. Even very small meals.

  • Profile picture of Alan Larrivee

    Alan Larrivee replied to the topic Speaking Up for Your Healthcare Needs in the forum Living With ALS 1 month, 3 weeks ago

    I’m fortunate that my wife and primary caregiver is not afraid of ruffling feathers. She can get things done. With my speech difficulties (coupled with a predisposition not to rock the boat) I can’t always advocate for myself. I am very grateful for her.

  • Profile picture of Alan Larrivee

    Alan Larrivee replied to the topic Another theory! Causes of ALS in the forum ALS News 2 months, 1 week ago

    I live in New England. But my ALS is curtesy of my Italian heritage.

  • Profile picture of Alan Larrivee

    Alan Larrivee replied to the topic Welcome to the Club in the forum Living With ALS 2 months, 1 week ago

    I forgot to say that I am so sorry to welcome you to the club.
    I always fall back to Groucho Marx who said I wouldn’t want to be a member of any group that would have me as a member…

    Amanda, you will be in my prayers

  • Profile picture of Alan Larrivee

    Alan Larrivee replied to the topic Welcome to the Club in the forum Living With ALS 2 months, 1 week ago

    That pesky C9 is what my family passed on to me. The drugs are important to me, I would love nothing more than a cure. But as I got it, so I am passing it on. That makes me saddest. I truly hope that my children and grandchildren get a chance for a cure. That’s why I will fight. Donate. Push for more funding and research. Praise the efforts b…[Read more]

  • Profile picture of Alan Larrivee

    Alan Larrivee replied to the topic Learning to LIVE with ALS in the forum Living With ALS 2 months, 4 weeks ago

    I have a question. It seems now I am far more emotional than I ever was. I can’t believe it but movies and songs can now bring a tear to my eyes. I chock up talking to people and can’t finish my thoughts if it’s an emotional topic. It’s nothing to do with me or my situation most times. I don’t understand.

    Has anyone else had this issue? I’…[Read more]

  • Profile picture of Alan Larrivee

    Alan Larrivee replied to the topic Confused about progression of symptoms in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 3 months, 1 week ago

    Diagnosed over this last summer. Started mostly as loss of clear speech. Muscle twitching became regular. Have seen atrophy in the hands. Right side weakness. But still functioning. I swim laps 3 times a week. Have dropped number of laps by a third. Try not to push it, too much and I can get pains in the muscles, but still love the water. Will be…[Read more]

  • Profile picture of Amanda

    Amanda and Profile picture of Alan LarriveeAlan Larrivee are now friends 3 months, 1 week ago

  • Profile picture of Alan Larrivee

    Alan Larrivee replied to the topic When did you first hear those dreadful three letters…A….L….S ? in the forum ALS Awareness and Advocacy 3 months, 1 week ago

    For some reason the response I posted to you was lost.

    I try again. I was genetically tested with C9. When my brother was diagnosed they could only test for SOD 1. He was negative for that. My mom died in 2002 and I don’t think there was any genetic testing being done. At least none was discussed.
    Good news though I have been accepted into a d…[Read more]

  • Profile picture of Alan Larrivee

    Alan Larrivee replied to the topic When did you first hear those dreadful three letters…A….L….S ? in the forum ALS Awareness and Advocacy 3 months, 3 weeks ago

    My grandfather died of ALS 5 years before I was born. So I grew up with the knowledge. When my mom was diagnosed in 2000 it was reinforced. That was followed quickly by a sister in law and a then my brother. I couldn’t trip without the thought of ALS sneaking into a conner of my mind.
    Then it was my turn. That news came on my birthday last s…[Read more]

  • Profile picture of Alan Larrivee

    Alan Larrivee replied to the topic Is it a Happy Season? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 3 months, 3 weeks ago

    That was well said Katie. All I want to add is that I treat this as possibly my last Holiday season that I’m near fully functioning. I owe it to my loved ones to do what I can to make this season a fond memory. Happiest of Holidays to all.

  • Profile picture of Alan Larrivee

    Alan Larrivee replied to the topic How Do you Decide What Medical Interventions are Acceptable? in the forum Living With ALS 3 months, 3 weeks ago

    Diagnosed only a few months ago. Bulbar. Voice is getting weaker. From a family of ALS, no one lasted more than a few years. I have no illusions about the future. Have a few advance directives. That said I will reserve the right to override myself if it want. Do not think I will but you never know. My faith sustains me. I feel the love and support…[Read more]

  • Profile picture of Alan Larrivee

    Alan Larrivee replied to the topic Getting over the Tofferson Fear in the forum Research Topics 4 months ago

    Was just informed that I have been accepted to a screening for a Transposon Trial. If I pass the screening there will be 3 spinal taps over the next year. Never had one before. Seen them on Doctor shows. Not comfortable about it but I don’t want to spend my days sitting around waiting for the end. Besides if I make it sound like I had an awful t…[Read more]

  • Profile picture of Alan Larrivee

    Alan Larrivee replied to the topic Winter is coming! What are your tips for avoiding weather-related ALS symptom aggravation? in the forum Living With ALS 4 months, 1 week ago

    First winter. Central Massachusetts isn’t the worst place. Have hyper reflexes. So much to look forward to. Thank you all for the heads up. It’s not something I would have thought about.

  • Load More
Profile Photo Katherine

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

  • Which ALS-related science, research, etc. topic is on your radar right now?
  • Which ALS-related science, research, etc. topic is on your radar right now?
  • artificial voice/speech equipment
  • artificial voice/speech equipment
  • Which ALS-related science, research, etc. topic is on your radar right now?

Members

Newest | Active | Popular
  • Profile picture of Dagmar Munn
    Dagmar Munn
    Active 2 hours, 2 minutes ago
  • Profile picture of Ray Chandler
    Ray Chandler
    Active 2 hours, 58 minutes ago
  • Profile picture of Kevin Schaefer
    Kevin Schaefer
    Active 6 hours, 30 minutes ago
  • Profile picture of Erin Dittoe
    Erin Dittoe
    Active 20 hours, 20 minutes ago
  • Profile picture of Alan Larrivee
    Alan Larrivee
    Active 1 day, 7 hours 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
  • Careers
  • Contact Us
  • Terms of Service
  • Privacy Policy
  • Disable Notifications
  • 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
  • Careers
  • Contact Us
  • Terms of Service
  • Privacy Policy
  • Disable Notifications
  • 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