Written by Linda Leahy
I too was diagnosed by my second neurologist in October 2024. She knew right away that I had MSA and not just Parkinson’s. Two years prior, I was diagnosed with Parkinson’s. I am disappointed I no longer play racquet sports because I fall and have a hard time balancing.
I am now 65 years old, but noticed something was wrong with me when I was 60 because of my tennis. I represented New England at USTA nationals for three years. I am most disappointed that I can’t play racquet sports anymore. I try to stay active because I’ve heard that exercise is good for me. I do strength exercises, boxing, OT, PT, speech therapy, yoga, movement class specifically for Parkinson’s, and a workout with a trainer once a week.
I have a good team of doctors in Boston at Beth Israel that include a urologist and an ENT doctor. My PCP is at MGH, but my team of specialists is at Beth Israel because I found Beth Israel is just better for me. I have a full care team of doctors. I am in a double-blind clinical trial called MASCOT and receive infusions every four weeks. This trial is in phase 3, and I don’t know whether I will get the drug or not. Again, there is no cure. But if they can learn more and can lengthen the disease—great.
I also have orthostatic hypotension, so I see two neurologists: one regular and one autonomic. My younger daughter, who is 32 and just married, has moved in with me because of my condition. I am now having a first-floor bedroom with a bathroom built within the footprint of the house.
Everyone’s journey is different, I know. I can walk, but when I go outside and walk short distances, I use an adjustable trekking stick. I can still drive short distances during the day and have a handicap parking placard. I take extended-release carbidopa/levodopa, which right now helps me not to shake as much. I also take an antidepressant.
I also have orthostatic hypotension, so I see two neurologists: one regular and one autonomic. My younger daughter, who is 32 and just married, has moved in with me because of my condition. I am now having a first-floor bedroom with a bathroom built within the footprint of the house.
Everyone’s journey is different, I know. I can walk, but when I go outside and walk short distances, I use an adjustable trekking stick. I can still drive short distances during the day and have a handicap parking placard. I take extended-release carbidopa/levodopa, which right now helps me not to shake as much. I also take an antidepressant.