Optimist
Forum Replies Created
-
My brother discontinued Relyvrio and Radicava in January after being on each for six months. He felt the benefits, if he experienced any, were not worth the side effects including several emergency room visits for severe constipation.
-
Sh!t Sh*w
-
My brother has ALS since 12/22. I will not vote for any candidate for any office who suggests any cutbacks in healthcare coverage and will prefer a candidate who seeks more along the lines of universal care. One thing I would really like to see for pALS is better and broader support for in-home care, home modifications, and better drug coverage.
-
I am truly sorry about your diagnosis. My brother was diagnosed over Christmas 2022. He recently discontinued both Radicava and Relyvrio after taking them for almost a year. The reason he did is that he felt he suffered side effects (severe bowel blockages in his case) but saw little evidence that the medication helped slow the progression of the disease. I will also say that the digression in your abilities as you posted them is very similar to his. I do not think the medication accelerated the progression, but he did not feel it slowed it either.
-
My 56-year-old brother was diagnosed last Christmas with ALS. A major stress factor at this moment is trying to navigate getting medical coverage under Medicare. He was recently enrolled in SSDI, so he does qualify for Medicare. It’s one thing to qualify but it’s quite another to find coverage for things like radicava, Relyvrio, in-home health care,end of life care should that become necessary, and so forth. It’s fortunate that my father was able to help him with 10’s of thousands of dollars worth of home mods and equipment, but that pot is much diminished. Can you or the community advise what direction to go to find coverage that will not leave his family with a burden of debt in addition to the burden of the loss of his life eventually?
-
What is a holistic doctor?