By Alan J. Smally
MSA Coalition Board of Directors Patient Representative
Thomas Wolfe wrote “You Can’t Go Home Again,” but I thought maybe I could for Christmas. Although I was born up north, I had my first birthday in Sarasota, Florida, and lived there all through school. I have always considered Sarasota to be my home.
I was diagnosed with Parkinson’s disease in 2015 and my diagnosis was changed to MSA in 2017. Initially, I was doing well. We traveled around the US in our RV twice a year for six years, always stopping in Sarasota. My wife navigated and I drove. I then had minimal symptoms and couldn’t conceive of not being able to travel whenever and wherever we wished.
But by December of 2021, my situation was dramatically different. We had sold our RV, independent ambulation was becoming difficult, my wife did the driving, and daily activities were difficult. My neurogenic bladder required intermittent catheterization during daytime hours. My wife placed a Foley catheter connected to a drainage bag each night. Having the Foley in place, allowed me to avoid getting up several times nightly and the attendant risk of a fall. My neurogenic orthostatic hypotension put me at risk for passing out.
Tip: We rely on a portable, cordless, cuff [ours is made by Omron] to monitor my pressure. When it is low, I take a water bolus and modify my activity. We brought the cuff along. It fits easily in our backpack.
My brother, his wife, my nephew, and high school friends still live in Sarasota or nearby. My brother and Sarasota friends and I have played poker once or twice a year for over 50 years. A game was planned during my visit. We made reservations on a nonstop flight. Cathing supplies and a bedrail were shipped to my brother’s house.
Tip: Shipping larger items is more reliable than checking them with luggage.
My meds with several extra days’ supply were carried on in our backpack. I wore a leg urine collection bag so we wouldn’t be searching for a place to catheterize enroute.
Tips: Take nonstop flights if at all possible. Carry on all meds and any equipment you could possibly need. Assume things won’t go as planned. Bring your own wheelchair/walker and check wheelchair at the boarding gate.
We had a wonderful trip. Unfortunately, I lost at poker! However, the camaraderie of the poker tradition was well worth it. You can go home again—but when you have MSA plenty of advanced preparation is advised.