Coping With Multisystem Atrophy

I have had Shy-Drager for several years. I knew I was ill, but no doctor would give me a single diagnosis. I suffered from chest pain shortness of breath, HTN, syncope (sorry I’m a nurse)and GI problems. After more than 20 ulcers and an incredible case of constipation. I was told I likely had stomach or pancreatic CA.

I reviewed the films, it did look like cancer. Within 6 weeks I had part of my small bowel, a wedge of my stomach and all of my colon removed. No Cure! I got worse. With no colon I needed to use the restroom at least once every 2 hours, I began to have hallucinations. Thankfully a shrink put me on drugs to reduce the anxiety and a sleeping pill.

When I had collected everything I needed to end this experience without leaving a trace, she put me on anti-depressants. If my parents had not already buried 2 children or if I could trust anyone to manage their health care, I would have gone ahead with my plans. I’m 51 now and female. No one could explain anything.

Mayo finally diagnosed me in 2005. Now my speech is affected, sometimes I lose my sight. It’s never good. I fall and faint daily. I used to be a global manager of invasive cardiology, now I cannot even spell or articulate what I mean. I collapse almost daily. I’ve broken ribs, blackened my eyes, had to have my left ear (just the top 1/2) reattached after I fell down a flight of stairs to the basement and broken a couple of small bones. I’m trying to keep my condition hidden from my parents. I no longer want to live.

I was hospitalized in FL, they didn’t know how to handle me. They showered my brain and lungs with clumps of emboli. I’m still trying to figure out how much brain and lung damage I have suffered. My husband has know come to understand that there is no “future” for me. My husband is a home body. I’ve traveled the world for my job. He’s finally understood that if I am going to enjoy anything it will have to be now. This winter we are going to renew our wedding vows near our other home in Florida. I feel frustrated and frightened. I feel guilty that my health may precipitate my parents death. I’m back to compiling my own “hemlock society” supplies.

When dementia sets in, I shall bow out. There is very little joy in my life, one day dementia will come, thankfully there are usually brief times of lucency. I’ll do this myself. The old saying is true. You are born alone and you die alone.