Info On Multiple Systems Atrophy. | MyParkinsonsTeam

Connect with others who understand.

sign up Log in
Resources
About MyParkinsonsTeam
Powered By
Real members of MyParkinsonsTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
Info On Multiple Systems Atrophy.
A MyParkinsonsTeam Member asked a question 💭

I was diagnosed almost five years ago with Parkinson’s. Recently I was diagnosed with Multiple Systems Atrophy. Any info, helpful hints, etc will be appreciated. Thank you.

posted October 23, 2022
View reactions
A MyParkinsonsTeam Member

I can understand why he felt the need to take laxatives. I can’t understand why he didn’t discuss this with his neurologist or his wife.

I’m glad you shared this story. Hopefully other people will learn from what you have shared. Just because a medication is OTC, does not mean it isn’t dangerous.

posted October 24, 2022
A MyParkinsonsTeam Member

My husband who died 10 years ago had MSA; his blood pressure was very low; he did well with it . He continued all his normal things; until one year before his death at age 78. He was a university prof! He drove ( couple of fender benders but nothing serious. What triggered his ultimate decline was dehydration from taking laxatives without telling me.
I don't think he suffered; he died at home in his recliner on hospice at home
We sought a 2nd opinion and that neurologist changed his medication to Amàntadine and stopped the Sinemet. He went for short walks alone and lived as before.
You should not let yourself get dehydrated, have your blood pressure monitored ; Enjoy what you have always enjoyed. He had a good caretaker -ME. We even went to Europe and the Caribbean. I am not suggesting that your course will be like his, ;just live and continue to do the things you always did. as much as possible. Never hesitate to ask for a 2nd opinion.
And now I have Parkinson's lol

posted October 23, 2022
A MyParkinsonsTeam Member

Thanks Andi, great advice. The name of the game is 'MOVE". And ALWAYS ask questions. Be your own ADVOCATE.

posted October 23, 2022
A MyParkinsonsTeam Member

I, too, have MSA, and I don’t use OTC meds for this problem. I eat a lot of oatmeal and it keeps things as they should be. Water is definitely important, but it’s bitter when I drink it, so I get these 4 Oz containers of juice and freeze them. I put the frozen Judi along with ice into a large cup/glass, add some flavored sparkling water and bottled water. I drink a lot during the day. No more dehydration or constipation. There are more important issues to consider, like ataxia, vision, plummeting blood pressure and autonomic issues all of which complicate the picture. With MSA one needs a team of doctors: My team, based on my issues, including a primary, pulmonologist, cardiologist, endocrinologist and soon a gastroenterologist and a Neuro ophthalmologist and of course my neurologist and palliative care. They put out fires as they occur since there is no treatment for the long term. Moving will take one only so far. Eventually it’s time for a wheelchair, which is where I am.

posted November 11, 2022
A MyParkinsonsTeam Member

Dehydration is a very serious problem. And one I have to keep reminding myself about.

posted November 11, 2022

Related content

View All
What Is MSA
A MyParkinsonsTeam Member asked a question 💭
Has Anyone Had A N Original Diagnosis Changed From Parkinson's To Multiple System Atrophy?
A MyParkinsonsTeam Member asked a question 💭
Someone Asked What's MSA? It Stands For Multiple System Atrophy
A MyParkinsonsTeam Member asked a question 💭
Continue with Facebook
Continue with Google
Lock Icon Your privacy is our priority. By continuing, you accept our Terms of use, and our Health Data and Privacy policies.
Already a Member? Log in