Advice needed

[Sarah106]

Hello,My brother is in mid 40s and recently diagnosed with MSA, three years ago he was diagnosed with Parkinson after contracting COVID-19.

I have read with MSA life expectancy is up to 7 years. Recently, he had cognitive assessment done which showed poor memory and planning & decision making skills. His Parkinson's nurse was surprised at his age his congnitive test is so poor, considering he has done very complicated courses in the past and had continuous work history. As a family, we are supporting him, but we don't know how to plan for his future. We are told he is at a complex stage. He still have mobility and at times he looks well. Anyone in similar situation, how do you support someone in his situation? Thanks for reading.

[Derkie54]

Hello,

Welcome to the forum, so sorry to hear about your brother.

He is young, my wife was diagnosed in 2016 and when I think back she was showing signs 25+ years ago.

They thought it might be MS, then PD and then MSA was confirmed.

We adjust to the changes as best we can which are fortunately not to frequent.

It's a friendly forum so ask if you need advice people are happy to share their experiences and don't forget to have a look at the MSA trust they are very helpful.

Take care

Derek

[MSADaughter]

Hi Sarah,

I'm so sorry to hear about your brother. Unfortunately for some folks, COVID-19 seems to "unlock" latent diseases. In my experience, cognitive issues happen in a more advanced state of disease. At least for my Dad, his memory has only recently gotten worse. That can also be a side effect of stress or depression, as obviously, this is a huge emotional struggle for folks. Also, some medications can cause these types of side effects - I have seen folks on here mention medications that caused their loved ones with MSA to gamble or become sexually inappropriate, so it's good to always check the adverse effects of any medication he is on and adjust if necessary.

There have also been some good studies about Ambroxol and CoQ10 helping slow the progress of the disease - my Dad has taken Ambroxol for months now and I definitely think it has given him more time. But the doses are much higher than what you would normally take so it might be good to involve his care team in this.

Wishing you all as much time as possible with your brother!

[Sarah106 in reply to MSADaughter]

Thank you, my brother takes following medicines: Sinemet plus 25mg/100mg =1.5 tablets 5x times a day. He also takes 50 mg of opicapone at night along with half Sinemet CR 25mg/100mg tablet at night also. He takes Fludrocortisone 100mg - 1 tablet a day. I do wonder if his medicines worsening his cognition ( memory and planning).

[Kaye31]

hi Sarah, it definitely made my husbands memory worse but also it didn’t help with movement and so he came off it. He is now on paracetamol only. He also was diagnosed in 2020 with Parkinson’s then a year later MSA. At 51. He is 53 completely immobile and has not been able to speak for 4 months. His mind is fully there and understands his finances, conversations everything. Reading is more difficult but that’s due to one eye that keeps closing. Xx

[Kaye31]

forgot to also say that voice banking is a must!

[Sarah106 in reply to Kaye31]

Who do we contact for voice banking? Thanks

[Kaye31 in reply to Sarah106]

MSA trust x