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

Sonsu

Home Members Sonsu
show less show more
Profile picture of Sonsu

@sonsu

  • Activity
  • Profile
  • Friends 2
  • Forums
  • Articles
  • Personal
  • Mentions
  • Favorites
  • Friends
  • Profile picture of Sonsu

    Sonsu started the topic Swollen Feet in the forum Living With ALS 1 week, 6 days ago

    Is anyone dealing with Swollen feet and how do you deal with the issue.

  • Profile picture of Sonsu

    Sonsu replied to the topic Loose bowel movements in the forum Living With ALS 1 week, 6 days ago

    Thanks George. How long you are having this issue.

  • Profile picture of Sonsu

    Sonsu started the topic Loose bowel movements in the forum Living With ALS 2 weeks, 1 day ago

    My husband is dealing with loss of appetite and loose motions for over a month now. This leads to overall decline. Is anyone else going through this.

  • Profile picture of Sonsu

    Sonsu replied to the topic Feeding Tube and Syringe in the forum Living With ALS 2 months, 1 week ago

    Feeding tube my husband got is compatible with Enfit syringe.  But we did not get right supplies from hospital as well as our Doctor. It took us some time to figure this out. Plus it was a holiday weekend when my husband got discharged from hospital. So it was very stressful.

  • Profile picture of Sonsu

    Sonsu started the topic Feeding Tube and Syringe in the forum Living With ALS 2 months, 1 week ago

    Is anyone having trouble with new type feeding tube which are incompatible with syrenges

     

  • Profile picture of Sonsu

    Sonsu replied to the topic Stomach Bloating in the forum Living With ALS 2 months, 3 weeks ago

    Not sure what lip seal means? Is there anything particular she suggested about head position

     

    Thanks

  • Profile picture of Sonsu

    Sonsu replied to the topic Stomach Bloating in the forum Living With ALS 2 months, 3 weeks ago

    What is ST?

  • Profile picture of Sonsu

    Sonsu started the topic Stomach Bloating in the forum Living With ALS 2 months, 3 weeks ago

    Is anyone having persistent Stomach bloating and dissented stomach. If yes what helps

  • Profile picture of Sonsu

    Sonsu replied to the topic What's the latest news on AMX0035? in the forum Research Topics 5 months, 2 weeks ago

    We are in US in New Jersey.  My husband is diagnosed with ALS for little less than year now.  He used NIV at night and during day when he naps.  Hence was interested if anything that can improve lung functioning.

  • Profile picture of Sonsu

    Sonsu replied to the topic What's the latest news on AMX0035? in the forum Research Topics 5 months, 2 weeks ago

    Hi Steve,

    What is LVR kit. Are you using NIV.  Is LVR kit in addition to NIV?  How does it help you.

  • Profile picture of Sonsu

    Sonsu started the topic Skin pigmentation/ dark patches in the forum Living With ALS 1 year ago

    Has anyone experienced dark patches/ pigmentation on skin since diagnosis.

  • Profile picture of Sonsu

    Sonsu replied to the topic Tracheotomy in the forum Living With ALS 1 year, 1 month ago

    <p style=”text-align: left;”>Thank you Jim. What is the monthly cost of nursing care you get and how much of it is covered by insurance.</p>

  • Profile picture of Sonsu

    Sonsu replied to the topic Tracheotomy in the forum Living With ALS 1 year, 1 month ago

    Thank you Mike. What is monthly cost of nursing care you get and how much of it is covered by your insurance.

    Are you based in US.

  • Profile picture of Sonsu

    Sonsu replied to the topic Tracheotomy in the forum Living With ALS 1 year, 1 month ago

    Thanks for sharing your experiences.  Post surgery is feeding is completely through tube? Also is there 100% loss of speech? Are you still having mobility or on wheel chair.

     

     

  • Profile picture of Sonsu

    Sonsu replied to the topic Applying for disability and medicare in the forum Living With ALS 1 year, 1 month ago

    <p style=”text-align: left;”>Thank you Lisa. My husband does have long term disability with his employer. To the extent he gets Social Security disability benefit does his LT Disability carrier pays less?</p>
    From the time you inform your employer how long did it take you to start getting disability benefit from employer policy provider. How does…[Read more]

  • Profile picture of Sonsu

    Sonsu started the topic Applying for disability and medicare in the forum Living With ALS 1 year, 1 month ago

    My husband diagnosed 3 months ago is working full time at this time.  We want to know our options regarding how and when one applies for medicare. He is planning to take long term disability from work when he is not able to work. Want to know timeline for applying for social security and medicare.

    • Profile picture of Amanda
      Amanda replied 1 year, 1 month ago

      Good morning Sonsu,

      My understanding is that a law was passed that people with ALS and similar diseases do not have to wait the mandatory 6 months to collect disability. After they complete the application and the process, they are immediately eligible. Regardless, please verify all information. “Most people can apply online on the SSA’s w…[Read more]

  • Profile picture of Sonsu

    Sonsu started the topic Tracheotomy in the forum Living With ALS 1 year, 1 month ago

    <p style=”text-align: left;”>Anyone on the forum has done the surgery or is contemplating of doing it. If anyone has what is life after surgery</p>

  • Profile picture of Sonsu

    Sonsu replied to the topic Clenbuterol – trial NCT04245709 by Dr Bedlack in the forum Research Topics 1 year, 2 months ago

    <p style=”text-align: center;”>From where do you buy Clenbuterol.</p>
     

  • Profile picture of Sonsu

    Sonsu started the topic ALS onset with effect on breathing first in the forum Living With ALS 1 year, 2 months ago

    Who on this forum has onset of ALS which impaired breathing function first and how it has declined over course of disease. My husband is recently diagnosed and is able to walk, talk and speak and breath okay in sitting standing position but can not lye on back without bipap machine

  • Profile picture of Sonsu

    Sonsu started the topic Sodium phenylbutyrate powder in the forum Living With ALS 1 year, 2 months ago

    Hi,

    Is anyone here taking this medication and paying for it out of pocket? We are currently paying $700 for monthly supply. Is anyone has source where it is cheaper than this.

    Thanks

     

     

     

  • 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

Who’s Online

There are no users currently online

Recent Replies

  • Relyvrio
  • Relyvrio
  • Relyvrio
  • Relyvrio
  • Relyvrio

Members

Newest | Active | Popular
  • Profile picture of Dick Fitzpatrick
    Dick Fitzpatrick
    Active 21 minutes ago
  • Profile picture of Amanda
    Amanda
    Active 26 minutes ago
  • Profile picture of Isabelle
    Isabelle
    Active 3 hours, 24 minutes ago
  • Profile picture of Doug Frazier
    Doug Frazier
    Active 16 hours, 47 minutes ago
  • Profile picture of Ray Chandler
    Ray Chandler
    Active 20 hours, 45 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
  • Careers
  • Contact Us
  • Terms of Service
  • Privacy Policy
  • Disable Notifications
  • Advertising Policy

Recent Posts

  • Molecular ALS subtypes linked to age of disease onset, survival
  • Enrollment complete in new trial of approved ALS therapy Relyvrio
  • Relyvrio, Radicava ORS Cost-effective at Current Prices: ICER

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