One scary thing about Parkinson’s can be not knowing what your future will look like. Everyone’s symptoms progress differently, but I was able to get a taste of how symptoms progressed for one person, Anne Sostrom, after a visit to my father-in-law in Virgina. Anne lives in the same retirement community as my dad-in-law, and shared with me stories from her life.
Parkinson’s has been just one challenge in an adventurous life including eloping with her high school sweetheart at 17, and eventually earning a Ph.D. in English while raising three children. The Parkinson’s diagnosis came in 1987 when Anne was 54. She had been walking across campus at the college where she worked in communications, and fell suddenly. No breaks, but she still thought she’d get it checked out. Her regular GP wasn’t available, so she went to an intern going into neurology. He evidently hadn’t gotten to the bedside manner courses yet, because as she walked in the door, he blurted, “Oh my goodness, you have Parkinson’s!” He determined this diagnosis based on the way she held her head and the way she walked. Interestingly, Anne had no tremors, although mild tremoring started perhaps three months later.
Anne hadn’t noticed anything unusual nor had her friends and coworkers. However, she had noticed she was having trouble handwriting. Unlike the usual pattern (mine anyway) where your handwriting gets smaller (“micrographia”), her handwriting was getting larger and going off at an angle. But she didn’t think anything of it, nor was she too concerned about the PD diagnosis. “I was busier than a cat on a hot tin roof, and the doctor said [PD] was slow moving,” Anne recalled.
Anne continued working full-time and eventually shifted over to part-time work three years later for health reasons unassociated with Parkinson’s. The Parkinson’s symptoms were held in check for some 12 years by medication, a dopamine agonist called Mirapex which was just being introduced at the time of her diagnosis. After about 12 years, the medication was upped to Levidopa (dopamine substitute), which again held symptoms in check.
Over the last ten years or so, Anne has gone through a common complication in later-stage PD: the voice getting softer and softer, to the point it was non-existent for a year. She went through voice therapy and regained her voice, but feels like she’s shouting even though she’s still soft-spoken. Mobility has also been impaired to the degree that she went to an electric wheelchair about three years ago, although she’s also able to walk with a walker. Anne grins and says “I’m down to three gaits now: lurch, shuffle, and stop.”
Anne’s story gives me a lot of hope for my own future. I love her wry spirit: “I’ve learned not to be afraid of Parkinson’s….but I’m not motherly about it either!”