Family Member Diagnosed

[Rainbow1]

A family member was just diagnosed two days ago. Not knowing much other than what I have read over the past two days here, and elsewhere on the internet, I am confused and frustrated. I immediately want some sort of stem cell treatment, or some sort of "fix". I know this is not possible. I am in a fighting mode for my brother. Want him to have the best possible care, but I'm thousands of miles away from him. And, ultimately, it's his decision.

Coping with the fact of knowing it's going to take his life is the hardest possible thing I have to do now. I want to be as supportive as I can be, but I'm also at the point where I want him to make some aggressive decisions to slow this thing down. He's 62.

Thank you for any assistance and suggestions.

 

[lgelb]

Hi Rainbow, sorry to hear about your brother. Please let him know he's welcome here.

At this point, with exception of early stage trials, which you can find on clinicaltrials.gov, people with ALS don't really have a "chase the latest and greatest" vs. "let nature take its course" decision to make, unless they venture into quackery and hucksterism. It's not like, he has a rare tumor so he goes to one of the three centers in the US that has better trials or surgeons for this subtype, having the right to expect a better outcome.

So while I completely understand your confusion/frustration, you will be even more frustrated if you believe that your brother by making some choice or another will leave years of good life on the table. He likely will not.

Here is a summary of what has worked for others here in terms of quality [which most consider the important thing] and quantity of life. Of course, we would add to that, trying riluzole, Radicava and/or Relyvrio, if/as indicated in his case, reimbursement permitting and as tolerated/OK to use with other health conditions/medications.

So the best way to be there for your brother is probably not to start sending him a bunch of URLs or questions (unless he wants you to), but to interact/share/listen/support him as you always have, and to let him shape what that looks like, probably in different ways as things move forward.

Best,
Laurie

 

[Rainbow1]

Thank you Laurie. Your advice is kindly appreciated. I love reading all of the posts and responses here. Everyone is so caring and knowledgeable.

I will continue to read and learn. Thanks again.

Sincerely,

Cindy

 

[affected]

It is a real shock. I hope you can allow yourself to just get through the shock stage as you are going to be such an important person for your brother.
Here are some of our resources, but take it slowly, there is a lot to absorb.
Definitely you can help fight for him, but it may be quite different than what you imagine just now.

Resources

www.alsforums.com

We will walk this with you, and your brother may find it helpful to be here too.

 

[MJT]

Cindy, I am sorry you are dealing with the shock of an ALS diagnosis. I find encouragement through the shared experience on this site, and I hope you will, too.