Multiple System Atrophy (MSA)

What is the symptom picture? Has he been dxed by doctor and how long in form dx?

I'm sorry to say that with MSA, you can only manage the symptoms. My spouse experienced symptoms (primarily REM sleep disorder and occasional orthostatic hypotension) for many years before receiving a diagnosis, By the time he was diagnosed in 2021, he was already quite ill.
In my opinion, PT played a major role in maintaining a good quality of life. He had PT off and on for about five years after the diagnosis, but he consistently did his exercises six days a week — up until the last two or three months of his life.
His positive attitude and determination to keep trying, along with medications for various symptoms such as blood pressure, sleep, etc, also helped improve his quality of life.
As for bladder issues: early on, he received Botox injections, which were very helpful in managing daytime symptoms, though they weren’t as effective at night. For nighttime, he used condom catheters for five years, which helped him avoid major urinary tract/bladder infections until 2024.
Despite all our efforts, there was a steady decline which is part of this disease. He passed away this past spring. Still, I believe he had a good quality of life overall, thanks to a combination of his personal attitude, regular exercise, symptom management, and the dedicated care of his physicians, nurse practitioners, and caregivers. After 2023 his POLST requested no invasive procedures which included feeding tubes. His MSA diagnosis was confirmed by a brain autopsy.

I truly wish you and your friend strength and support on this journey. The MSA journey is not something anyone would choose, but know that good moments and quality of life are still possible along the way.

He has been dealing with rapid decline for over two years. Many symptoms, from needing help to get up and move, to tremors, to balance problems, and problems with autonomic functions. He has had many visits and treatments from doctors but needs something special that might be out there. Thank you.
Regards,
Sagan

Thank you. I wish you all the best. And please remember my favorite scientific law, the first law of thermodynamics: energy can be neither be created or destroyed. Therefore, when our loved ones pass away, they are still part of the universe that we live in, just in different forms of energy.
Regards,
Sagan

Have you asked his doctor about any drug trials that he may be eligible for? It’s a slim hope it will be something useful in my opinion, but it is a hope. So sorry.

Investigating the below trial now. It may help others too.

Alterity’s lead candidate, ATH434, is an oral agent designed to inhibit the aggregation of pathological proteins implicated in neurodegeneration. ATH434 has been shown preclinically to reduce α-synuclein pathology and preserve neuronal function by restoring normal iron balance in the brain. As an iron chaperone, it has excellent potential to treat Parkinson’s disease as well as various Parkinsonian disorders such as Multiple System Atrophy (MSA). ATH434 successfully completed Phase 1 studies demonstrating the agent is well tolerated and achieved brain levels comparable to efficacious levels in animal models of MSA. ATH434 recently announced positive results from the randomized, double-blind, placebo-controlled Phase 2 clinical trial in patients with early-stage MSA. A second Phase 2 open-label 2 Biomarker trial in patients with more advanced MSA is ongoing. ATH434 has been granted Orphan Drug Designation for the treatment of MSA by the U.S. FDA and the European Commission.
Regards,
Sagan

Hi, @saganjames - for anyone who'd like to read more about the Phase I and II completed trials you mentioned, will you provide a citation/link?

Here is the link/story:
https://alteritytherapeutics.com/investor-centre/news/2025/05/05/alterity-therapeutics-granted-u-s-fda-fast-track-designation-for-ath434-to-treat-multiple-system-atrophy/#:~:text=Biomarkers%20were%20used%20to%20evaluate,ClinicalTrials.gov%20Identifier:%20NCT05109091.
Regards,
Sagan