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

Charles Sutherland & Doris Sutherland (caregiver)

Home Members Charles Sutherland & Doris Sutherland (caregiver)
show less show more
Profile picture of Charles Sutherland & Doris Sutherland (caregiver)

@sutherland1953

Radicava ORS. We’re having so many problems getting the our Medicare advantage plan to approve it. Our doctor (neurologist) has done the Prior Authorization and submitted medical documentation, and two appeals that have been denied. He has ALS. I don’t understand. Can anyone share their experiences and positive outcome. It’s been heartbreaking. View
  • Activity
  • Profile
  • Friends 0
  • Groups 0
  • Forums
  • Articles
  • Personal
  • Mentions
  • Favorites
  • Friends
  • Groups
  • Profile picture of Charles Sutherland & Doris Sutherland (caregiver)

    Charles Sutherland & Doris Sutherland (caregiver) replied to the topic ALS Community Spotlight: "Living with ALS has brought many changes, but we ‘keep on keepin’ on’” in the forum ALS Awareness Month 2 weeks, 5 days ago

    My husband still goes to the shed with his brothers. He was always the one tat kept the lawn movers ready to go. His brother had not yet retired.  So, when mowing the lawn day came,  he and his two brothers just got busy. His brothers re now learning what he did, his skills, and how much he did. He is unable to do the manual labor part but his k…[Read more]

  • Profile picture of Charles Sutherland & Doris Sutherland (caregiver)

    Charles Sutherland & Doris Sutherland (caregiver) replied to the topic What aspect of ALS has surprised you the most? in the forum Living With ALS 1 month, 2 weeks ago

    I just asked my husband this question. He said it was the speech. My husband has always been the family spokesman. Today, it’s just the opposite. It hurts my heart to see him struggle to get his words out. We have voiced banked for the future. But we know it will not be the same. But we’re thankful for technological advances.

  • Profile picture of Charles Sutherland & Doris Sutherland (caregiver)

    Charles Sutherland & Doris Sutherland (caregiver) replied to the topic First Symptoms in the forum Living With ALS 2 months ago

    My husband’s first symptoms were in early 2000. He developed weakness in his left leg. Doctors, at that time, thought it was his spine (spinal stenosis) that eventually resulted in three surgeries, that did not help.  He was finally diagnosed in September 2022, after ruling out of Parkinson, MS, Myasthenia Gravis, etc.  The speech problem, alon…[Read more]

  • Profile picture of Charles Sutherland & Doris Sutherland (caregiver)

    Charles Sutherland & Doris Sutherland (caregiver) replied to the topic What kind of power lift chairs are recommended by ALS people like me in the forum Mobility Aides, Assistive Technology and Medical Equipment 2 months, 2 weeks ago

    My husband recently got thePermobil with the  seat elevator. It’s the bomb. He has regained some of the independence he’d lost. He’s back in the cabinets and to the mailbox to retrieve our mail. So happy he has this chair. With ALS, independence, no matter how small, is so important.

     

     

     

  • Profile picture of Charles Sutherland & Doris Sutherland (caregiver)

    Charles Sutherland & Doris Sutherland (caregiver) replied to the topic The love of my life ( Kenneth E Steadham) in the forum In Loving Memory 3 months, 4 weeks ago

    So sorry about your loss. ALS is a terrible disease. I totally agree. The devices are so very important to aid in a better quality of life. I’m the caretaker for my husband. I have learned how to operate his trilogy machine. He uses it every night. I watch him breathing. This machine gives me a kind peace, and him a better nights rest. There are o…[Read more]

  • Profile picture of Charles Sutherland & Doris Sutherland (caregiver)

    Charles Sutherland & Doris Sutherland (caregiver) replied to the topic Relyvrio in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 5 months ago

    My husband has been on Relyvrio since diagnosis in September 2022. There have been no side effects thus far. We’re trying to get Radicava approval from our insurance. It’s been appeal after appeal. Some of these Medicare advantage plans are horrible. His neurologist want him in this medication but insurance will not budge. But we will not give up…[Read more]

  • Profile picture of Charles Sutherland & Doris Sutherland (caregiver)

    Charles Sutherland & Doris Sutherland (caregiver) replied to the topic Relyvrio in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 5 months ago

    My husband has been on Relyvrio since diagnosis in September 2022. There have been no side effects thus far. We’re trying to get Radicava approval from our insurance. It’s been appeal after appeal. Some of these Medicare advantage plans are horrible. His neurologist want him in this medication but insurance will not budge. But we will not give up…[Read more]

  • Profile picture of Charles Sutherland & Doris Sutherland (caregiver)

    Charles Sutherland & Doris Sutherland (caregiver) posted an update 5 months, 2 weeks ago

    Radicava ORS. We’re having so many problems getting the our Medicare advantage plan to approve it. Our doctor (neurologist) has done the Prior Authorization and submitted medical documentation, and two appeals that have been denied. He has ALS. I don’t understand. Can anyone share their experiences and positive outcome. It’s been heartbreaking.

  • Profile picture of Charles Sutherland & Doris Sutherland (caregiver)

    Charles Sutherland & Doris Sutherland (caregiver) replied to the topic When did you first hear those dreadful three letters…A….L….S ? in the forum ALS Awareness and Advocacy 6 months ago

    Well, my husband didn’t want to reply. My husband first had symptoms in 1998.  The doctors diagnosed him with spinal stenosis, pinched nerve, compression  of spinal cord – cervical lamenectomy. This lead to three unnecessary surgeries. Fast forward to retirement in 2008, new location and new doctors – as weakness, balance and muscle loss pro…[Read more]

    • Profile picture of Amanda
      Amanda replied 6 months ago

      Wow, Doris, your husband really went through a lot of misdiagnosis prior to his ALS diagnosis. That sounds dreadful and frustrating. It hasn’t been very long either. How are you both doing?

  • Profile picture of Charles Sutherland & Doris Sutherland (caregiver)

    Charles Sutherland & Doris Sutherland (caregiver) replied to the topic How do you describe ALS to friends and family? in the forum Living With ALS 6 months, 1 week ago

    We just tell them I have an incurables disease call ALS. It causes muscle weakness. My brain and spinal cord signals are not in are not working as they should. There’s only treatment to slow the progress. And If you want to know more about ALS – just Google it. People will look at you so pitifully.

  • Profile picture of Charles Sutherland & Doris Sutherland (caregiver)

    Charles Sutherland & Doris Sutherland (caregiver) posted an update 6 months, 1 week ago

    Radicava ORS denied for the second time due to not meeting Medicare criteria – FVC not greater than or equal to 80. I reached out to my doctor this morning. Are there any suggestions?

  • Profile picture of Charles Sutherland & Doris Sutherland (caregiver)

    Charles Sutherland & Doris Sutherland (caregiver) became a registered member 7 months, 1 week ago

    • Profile picture of Amanda
      Amanda replied 7 months, 1 week ago

      Hello Charles and Doris,
      Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!

      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 e…[Read more]

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 7 months, 1 week ago

      Hello Charles & Doris,

      Welcome to the forum! I am one of the forum moderators and a person 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. You can also search for past topics or discussions by…[Read 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

Profile picture of Kevin Schaefer
Profile picture of Peter

Recent Replies

  • Organ donation and ALS
  • Coping with ALS
  • Organ donation and ALS
  • Relyvrio
  • Relyvrio

Members

Newest | Active | Popular
  • Profile picture of Kevin Schaefer
    Kevin Schaefer
    Active 49 seconds ago
  • Profile picture of Peter
    Peter
    Active 12 minutes ago
  • Profile picture of Alan Larrivee
    Alan Larrivee
    Active 20 minutes ago
  • Profile picture of Blažej Pálenik
    Blažej Pálenik
    Active 31 minutes ago
  • Profile picture of Dianne
    Dianne
    Active 1 hour, 9 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