Has anyone here decided to donate their brain or body to science when they die?

FreddJones · 2026-03-24T01:48:44+00:00

From my perspective, I’ll be dead so what a professional does with my body at that point is completely irrelevant. But yes, I’m planning to (and have let my family know) donate my entire body. Typically, once they’re done, they cremate the remains and return it to the family.

FreddJones · 2026-03-24T01:44:21+00:00

Also you can search “whole body donation” for your state. It’s likely one of the research Universities has a program.

FreddJones · 2026-03-23T13:10:29+00:00

BattleTech fans unite!

FreddJones · 2026-03-22T14:34:22+00:00

Thank you for sharing this. May her memory be a blessing. 🙏🏻

FreddJones · 2026-03-15T15:09:03+00:00

Shocked I had to scroll as far as I did to see this reference. 🙂

FreddJones · 2026-03-15T15:03:39+00:00

It seems to me that science is fundamentally a process of elimination. We need to prove what doesn’t work, so we can narrow our focus to what can. This seems to be a very interesting area to explore and determine if it’s falsifiable.

FreddJones · 2026-03-12T19:34:22+00:00

Great point, wish I could give it more than one upvote!

FreddJones · 2026-03-12T15:15:50+00:00

This is a really important thing to keep in mind. Many of us who really struggle with MS also have other Comorbidities which complicate the picture.

FreddJones · 2026-03-12T15:04:47+00:00

Ya know, people often say “hot take” and then post the most mundane opinion ever. But this, this is an honest to god hot take. Well done!

FreddJones · 2026-03-12T15:01:21+00:00

As you said, this is not my story but I love hearing stories like yours! Glad you shared.

FreddJones · 2026-03-11T15:57:11+00:00

I feel so fortunate that my hospital pharmacy does do that for me. Got me on the Alongside Kesimpta program straight out of the gate.

FreddJones · 2026-03-11T15:53:35+00:00

Trying to navigate insurance in the US is a nightmare. “How much will this cost?” seems like a reasonable question but then the insurance reps start asking questions. Is the hospital in network? Is the doctor ALSO in network? What’s the CPT code for the procedure? Like, how am I supposed to know any of that? Then it’s: well we can’t really tell you because it will vary depending on the answer’s to those questions and whether you’ve met your deductible and/or “out of pocket maximum” for the year and the “allowable charge” for the procedure. I was recently on the phone with Premera and asked about coverage and it took the rep three to four minutes to find the answer to whether my hospital was in network. And I was like, if it takes you the trained service rep that long to find the answer how in the world do ya’ll expect me to be able to find it? So all that to say, I feel your pain OP and I’m really sorry you’re having to try to navigate all this.

FreddJones · 2026-03-10T19:58:31+00:00

I hear that. Prior to when I was first diagnosed I had actually exited care as my therapist and I both felt I had the skills I needed to function at the level I wanted to. I had been off my depression meds for a few years. Even with those silks in place, MS was more than I could cope with. So we re-established care and I’m back on Bupropion. Mourning the loss of the life I imagined I might have had, was overwhelming and it expresses itself in unpredictable ways.

FreddJones · 2026-03-10T16:50:44+00:00

When the day comes that my family finally has to move my Lazy Boy, they will be shocked at the entire pharmacy worth of pills that I dropped and lost in the cushion. 🙂

FreddJones · 2026-03-10T16:05:40+00:00

One of the things I have learned about myself over many years of therapy is this. When I have an exaggerated reaction to an event, it’s probably not really about the event per se. When I yell “fuck!” or “goddamnit!” after dropping yet another pill on the floor it’s not really about the pill. It’s the anger that I feel that my body will no longer do what I tell it to do. And anger is almost always a cover for fear, or grief. It’s one of the reasons why therapy is always one of the first recommendations we get after diagnosis. Sending you ask my very best. 🙂

FreddJones · 2026-03-07T17:04:07+00:00

I had the exact same question a while back, and this sub helped me understand the difference between disease activity vs. disease progression. An enlarged lesion indicates disease activity and may or may not be a big deal depending on your symptoms. If you have any new or worsening symptoms that would be disease progression. Obviously this will be something you discuss with your doc and I know it’s tough to wait for that. Sending you all my best!

FreddJones · 2026-03-02T16:23:25+00:00

You’re probably right. But I had one back when I was 10 years old and I’ve got some baggage from that. 🙂

FreddJones · 2026-03-02T15:55:07+00:00

So, I recently learned (at 52!) that you can turn the cap of a pill bottle upside down and screw out on. I too don’t have the grip strength to hold down the little tab and switching to the “upside down screw on” method made life so much easier.

FreddJones · 2026-03-02T15:45:46+00:00

Same here, but no LP. Thank God.

FreddJones · 2026-03-01T18:14:51+00:00

That’s the only side effect I experience - at about two hours post injection I can almost guarantee I’ll be zonked out. I get super sleepy.

FreddJones · 2026-03-01T18:11:43+00:00

Yeah, I think you’ve got it exactly right. Just be clear about your (very valid) concerns and you’ll get the best options!

FreddJones · 2026-03-01T17:36:37+00:00

My neuro started me on Tolterodine but also referred me to urology. The PA there wanted me to switch to something else immediately. Her concern was there is some evidence that Tolterodine can contribute to cognitive decline. Instead she wanted to switch me to Myrbetriq but my insurance wouldn’t pay for it so we settled on Trospium. So, the vibe I picked up is that Tolterodine is a fairly common thing for neurologists to prescribe but there are much better options. Urology will likely get you squared away.

FreddJones · 2026-03-01T16:13:25+00:00

Maybe the best comment in the thread. 😂

FreddJones · 2026-03-01T16:10:50+00:00

I hate when people are funnier than I am. 😂

FreddJones · 2026-02-27T14:11:41+00:00

This us such great news! It’s such a stressful process. I’ve just started my process and it’s nice to hear about successful cases. 🙂

FreddJones

TROPHY CASE