Stepping Up to the Parkinson's Buffet
Last updated: September 2021
I am a planner. I don’t like surprises. I hate magic shows. Okay, I admit, I’m a bit of a control freak. So, it’s natural for me to need to know everything about every circumstance I encounter in life. Parkinson’s was no exception.
I went online. I bought books. I needed to know everything about this new challenge. Most of all I wanted to know how bad it is and how much worse it might become. Several sources referred to the Hoehn and Yahr 5 stage scale of disease progression used by physicians.
Reading about each stage felt like when one goes up to a buffet with various food stations. However, rather than food stations, each was a stage of Parkinson’s.
I grab a tray and walk up to stage 1. I’ve had Parkinson’s for about 2 years. I’m expecting to find a symptom there. Ah, yes, I place tremors on my tray. On one side of the body? Yes, a left hand, arm and leg was difficult to control.
Other sources have mentioned changes in handwriting. I see this at this stage and place it on my tray. It explains why my writing looks like tiny ants crawling across the page.
Tasks are taking longer
I move on to stage 2, not expecting to add much to my tray. Muscle stiffness, yes. Trouble with walking? I guess needing a walker to compensate for my new shuffling gait signals some difficulty walking.
Tasks taking longer? The 5-minute showers I took when my kids were little are definitely things that are now long gone. Getting the temperature just right, reaching for the soap and trying to avoid slipping now makes taking a shower a major, must plan ahead a complex, well timed and often very tiring event.
Before I leave that station, with my tray getting heavier, I notice a sign: "The progression from stage 1 to stage 2 can take months or even years." I realize that I fall into the "take months" category.
Losing my balance
I move on to stage 3. I assume there will be little or no symptoms I will find there. Hoehn and Yahr state that this stage marks a major turning point in the progression of the disease.
Surely, I won’t find anything to add to my tray. Darn it. Experience a loss of balance? Grabbing on to the counter and anyone near me to keep from falling means it goes on the tray.
Decreased reflexes? I guess not being able to catch falling dishes, cups and glasses means decreased reflexes go on my tray.
Movements become slower? Remembering that I used to be able to rinse dishes and load the dishwasher in 20 minutes and now must stop often, making it a 45-minute chore means I must add slower movements to my tray.
I stay hopeful
By the time I reach stage 4, the tray is getting very heavy. Requiring a walker or wheelchair? I have had the "needing a walker" on my tray since stage 2. A wheelchair is back-up when the walk is too long or on uneven surfaces.
I’m about to move to stage 5 when another station marked "hope" catches my eye. It’s loaded with many "desserts". I make room on my try for, "I’m still alive," "I have a loving family," and "I’m still doing the work I love." Funny, the tray seems a lot lighter now.
Stage 5 can wait.
Do you experience issues with spatial awareness?