MSA or PSP - Parkinson's Plus

[Sarah106]

Hello,My brother is in mid 40s , diagnosed with Parkinson in 2020 after getting COVID-19. Since then, he has detoriated very rapidly. He has had MIBG scan recently which reveals he has PSP or MSA. We are very worried for him, at his age we weren't expecting this. Anyone in similar situation? What's the best way to support him?.Thanks

[jeeves19]

Sarah. I have Parkinson’s but my Mum in Law had PSP: it’s shit love, nothing else to say. Just be there for him and remember that who he seems now wasn’t always the case. Remember him at his best and be patient with him. He wants to move but can’t!

[Sarah106 in reply to jeeves19]

Thanks for your reply. I would like to know what medicines your MIL take? My brother is taking sinemet but he's still getting worse. Can she sleep at night, he's struggling to turn or even stand up.

[jeeves19 in reply to Sarah106]

Unfortunately there were no effective drugs. This was about 15 yrs ago. She did take anti depressants, but that was all. It’s a really tough condition but the PSP Association are very helpful. It’s important that your brother has a good diet because it gets harder to eat as the disease progresses. She was eligible for Continuing Care which meant free care which she had at home throughout the disease. None of the health professionals seemed to know about this so you do have to keep pushing. Social services can provide living aids to help get in bed/shower etc as needed.

The person you know is there but as time goes they will be unable to show you that, but that part of their brain remains the same.

Best of luck.

[park_bear]

See the comments to this post on CoQ10: healthunlocked.com/cure-par...

[LeharLover62]

So sorry, this is devastating.

You could also look into High Dose Thiamine or Ambroxol for off label ideas.

healthunlocked.com/cure-par...

healthunlocked.com/psp/post...

Hubbys only 61 and in advanced PD…the support is not great when you are young. People do not understand and don’t know how to help. And the system is set up older folks. ( I can’t even access my retirement funds yet)

I would find help now for mobility support (PT, caregivers) that is trustworthy and or family and friends that he can rely on. It’s much easier if you have this ready. We are young and I’m faced with either a nursing home (I’m still working) or hiring a bunch of caregivers in home.

Oh yes, and get his estate in order now just in case including power of attorney.

Also make sure you get a second opinion…given his age I’d seriously consider either the Mayo Clinic or Cleveland clinic at any cost.

[gomelgo]

I wonder if the low dose naltrexone I was prescribed, but didn't take for too long, could be helpful. I also was diagnosed after having had covid, which I got a severe case of in November of 2019. content.iospress.com/articl...