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

Susan

Home Members Susan
show less show more
Profile picture of Susan

@susanarchitect

  • Activity
  • Profile
  • Friends 4
  • Groups 0
  • Forums
  • Articles
  • Personal
  • Mentions
  • Favorites
  • Friends
  • Groups
  • Profile picture of Susan

    Susan replied to the topic Genetic Mutations and Muscle cramps? in the forum Living With ALS 2 years, 6 months ago

    yes C9 gene and muscle cramps..first in calves then hands

    My late dad also C9 had bad leg cramps

  • Profile picture of Susan

    Susan replied to the topic Home renovations and ALS in the forum Mobility Aides, Assistive Technology and Medical Equipment 2 years, 7 months ago

    We are adding an elevator and making bathroom and kitchen more accessible. no step shower.

    a nice front porch with ramp and deck too.

     

  • Profile picture of Dagmar Munn

    Dagmar Munn and Profile picture of SusanSusan are now friends 2 years, 8 months ago

  • Profile picture of Susan

    Susan replied to the topic Have you traveled soon after your diagnosis? in the forum Living With ALS 2 years, 9 months ago

    Yes traveled with cane and scooter but since March 2020 home bound.

  • Profile picture of Susan

    Susan replied to the topic Rilozole experience? in the forum A​ ​Forum​ ​for​ ​ALS ​Caregivers​ 2 years, 10 months ago

    I took it for 6 weeks then bad side effects, light headed, distressed stomach, and weakness and more..Doctor said to stop  so I did.

  • Profile picture of Susan

    Susan replied to the topic Information or results on RILUZOLE in the forum Research Topics 2 years, 11 months ago

    I took RILUZOLE for 6 weeks and the side effects were awful. so my neurologist told me to stop and I felt much better.

    Susan

     

  • Profile picture of Susan

    Susan replied to the topic Do you experience muscle twitching? in the forum Living With ALS 2 years, 11 months ago

    I did have some but then I stopped caffeine and ate well and gluten free too.  So my body is calm now

    also B12 and D3 and other vitamins and zinc.

  • Profile picture of Susan

    Susan replied to the topic Do you experience muscle twitching? in the forum Living With ALS 2 years, 11 months ago

    I did have some but then I stopped caffeine and ate well and gluten free too.  So my body is calm now

  • Profile picture of Kathryn F. Kennedy

    Kathryn F. Kennedy and Profile picture of SusanSusan are now friends 2 years, 11 months ago

  • Profile picture of Danielle Uskovic

    Danielle Uskovic and Profile picture of SusanSusan are now friends 2 years, 11 months ago

  • Profile picture of Amanda

    Amanda and Profile picture of SusanSusan are now friends 2 years, 11 months ago

  • Profile picture of Susan

    Susan replied to the topic Does ALS slow you down? in the forum Living With ALS 2 years, 11 months ago

    oh yes, I was diagnosed 11/19 and in my legs and some weakness in arms but still functioning…Getting dress takes 10 x’s as long but I’m very careful too. Making Lunch takes awhile but I’m OK with ALS time so far.

     

  • Profile picture of Susan

    Susan replied to the topic ALS Awareness Month Spotlight: Susan Gray in the forum ALS Awareness Month 3 years ago

    Hi Susan,

    I noticed my left foot slapping in October/November of 2017. I was misdiagnosed with Lyme, the test and Positive for ALS. I was with a cane for a good year, then a walker and wheelchair. As a hiker, I purchase a Grit Freedom Chair, that is good on hills and dirt paths. Keep moving as long as you can!

    I’m a Susan too.

  • Profile picture of Susan

    Susan posted a new activity comment 3 years, 6 months ago

    Thank you!

    View Conversation
    • Profile picture of Amanda
      Amanda replied 3 years, 6 months ago

      Hello Susan, Thank you for joining the group! I have the SOD1 gene mutation, but do not have ALS yet. I have volunteered for several studies, one (pre-fALS out of the University of Miami) is ongoing. I go at least once a year and do a lot of the tests that they do when they are trying to rule ALS in or out. They also collect blood, urine and…[Read more]

  • Profile picture of Susan

    Susan posted a new activity comment 3 years, 6 months ago

    Hello Dagmar,
    Thank you. I recently found out that I have the C9orf72 gene with too many repeats. So it fALS for me and FTD for my younger brother in his 50’s… ( my father FTD in his 70’s and his father ALS in his 50’s) I would be very interest with other with this gene and what they have done. Thank you.

    View Conversation
    • Profile picture of Dagmar Munn
      Dagmar Munn replied 3 years, 6 months ago

      Amanda, who shares Forum moderating with me is a fALS. She will be a good resource and helpful support for you. You’ll be hearing from her soon. 🙂

      • Profile picture of Susan
        Susan replied 3 years, 6 months ago

        Thank you!

        • Profile picture of Amanda
          Amanda replied 3 years, 6 months ago

          Hello Susan, Thank you for joining the group! I have the SOD1 gene mutation, but do not have ALS yet. I have volunteered for several studies, one (pre-fALS out of the University of Miami) is ongoing. I go at least once a year and do a lot of the tests that they do when they are trying to rule ALS in or out. They also collect blood, urine and…[Read more]

  • Profile picture of Susan

    Susan became a registered member 3 years, 6 months ago

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 3 years, 6 months ago

      Hello Susan,
      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 Susan
        Susan replied 3 years, 6 months ago

        Hello Dagmar,
        Thank you. I recently found out that I have the C9orf72 gene with too many repeats. So it fALS for me and FTD for my younger brother in his 50’s… ( my father FTD in his 70’s and his father ALS in his 50’s) I would be very interest with other with this gene and what they have done. Thank you.

        • Profile picture of Dagmar Munn
          Dagmar Munn replied 3 years, 6 months ago

          Amanda, who shares Forum moderating with me is a fALS. She will be a good resource and helpful support for you. You’ll be hearing from her soon. 🙂

          • Profile picture of Susan
            Susan replied 3 years, 6 months ago

            Thank you!

            • Profile picture of Amanda
              Amanda replied 3 years, 6 months ago

              Hello Susan, Thank you for joining the group! I have the SOD1 gene mutation, but do not have ALS yet. I have volunteered for several studies, one (pre-fALS out of the University of Miami) is ongoing. I go at least once a year and do a lot of the tests that they do when they are trying to rule ALS in or out. They also collect blood, urine and…[Read more]

Profile Photo Cate Profile Photo Cindy

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

Profile picture of Maryann

Recent Replies

  • Does fungus cause ALS!
  • Does fungus cause ALS!
  • ALS TRIVIA – – “The Les Turner Foundation” – – Did you know?
  • Does fungus cause ALS!
  • Coping with ALS

Members

Newest | Active | Popular
  • Profile picture of Maryann
    Maryann
    Active 14 minutes ago
  • Profile picture of Len Jax
    Len Jax
    Active 57 minutes ago
  • Profile picture of Rich
    Rich
    Active 1 hour, 8 minutes ago
  • Profile picture of Christina Birdsong
    Christina Birdsong
    Active 1 hour, 50 minutes ago
  • Profile picture of Marcelyn K. Harness
    Marcelyn K. Harness
    Active 2 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