My husband was diagnosed with early onset Parkinson’s in 2005 when he was in his late forties. In retrospect, with a new understanding of the disease and symptoms, we realized he had Parkinson’s since he was in his twenties. There wasn’t anything huge which is why we never realized it: an inability to bend one foot a certain way, dragging that same foot slightly which necessitated getting the heel of his shoe replaced once or twice a year.
It’s insignificant that he had it that long because, in terms of treatment, the symptoms were so minor that nothing would have been done. The only significant point is that the symptoms were barely noticeable for close to thirty years, thus the realization that the disease was progressing extremely slowly.
That changed in the early 2000s. I felt uncomfortable walking on his right side and holding his hand. Something felt off but it wasn’t until years later that I realized what was off about it was his arm was stiff and wasn’t swinging normally. I always switched to his left side. Then I realized he was having difficulty preforming certain tasks like typing with his right hand and using a knife. His handwriting deteriorated. We thought it was carpal tunnel syndrome from all those years at a keyboard. Parkinson’s wasn’t even on our radar until I sent him to the doctor for his wrist and that’s what they came back with.
Within four years the symptoms progressed rapidly* and extended from just his right side to both sides. Medication helped with the symptoms and he was able to function semi-normally. I’m using the term ‘semi’ because Parkinson’s medications are a bit unpredictable. There are ‘on’ periods when they’re working well and the symptoms are well controlled and there are ‘off’ periods when it’s as if you haven’t taken anything at all.
Parkinson’s is a progressive disease. There is no cure and the symptoms get worse over time. How the progression goes varies greatly from one person to another but eventually the medication will need to be increased, the intervals between doses will shorten, and the side affects (mainly dyskinesia- uncontrollable movements) will get worse. That is where we found ourselves by the end of last year. (Part 2 to this story follows)
* I am convinced the factor that kicked his Parkinson’s from slow progression to rapid was the trauma and stress he experienced during 9/11. (He worked at the World Trade Center & witnessed things he hasn’t ever spoken about. )