Walking, talking, responding, and every activity attempted by a person with Parkinson’s is different from the timing and rhythms most accepted by the world we all live in.
Many Parkinson’s patients experience a symptom called Bradykinesia- or slowness of movement. The cause of this symptom is a lack of dopamine but the effect I’ve seen in Andy is frustration and a lack of tolerance both in himself and in people interacting with him- including me.
Walking, talking, responding, and every activity attempted by a person with Parkinson’s is different from the timing and rhythms most accepted by the world we all live in.
When I set Andy up outside, in a chair, with his plant cutting shears to cut back the giant Maximillian Daisy plant that blooms large in front of our home, I know he will be doing that job for a very long time. It is a big job but not big enough for someone without Parkinson’s to allow me the time to sweep and wash the patio and walkway, wash all the windows, wind up the hoses, straighten everything in the garage to make room for winter storage AND sweep out the garage.
I have had to adjust my own expectations and rhythm to match Andy’s pace. What could have been frustrating gets transformed into gratitude that he can help at all.
When Andy makes breakfast for himself, and that doesn’t happen often, there is a need for another shift in timing. What would take me a very short time, takes Andy a lot longer. He moves slower.
Unfortunately, the pot of oatmeal boils as fast for him as it does for me, and usually there is a pan to clean because he wasn’t able to get to it before it boiled over. I could do all the cooking but I have grown to understand that Andy cooking slowly and making some mess is a better situation than Andy not cooking at all.
Efficiency can be overrated and taking part can be underrated.
We were flying on American Airlines and weren’t seated together. We were in the same row but both had middle seats so nobody wanted to change with us. We had boarded early because it takes longer for Andy to get settled. The man assigned to the window seat next to Andy was waiting in the aisle for Andy to get up and let him in. Andy was having some trouble standing and moving and I could see the rising impatience in the man waiting.
I spoke up.
“My husband is moving as quickly as he can with Parkinson’s disease. Thanks for being patient- also, he’s not able to speak but he understands everything.”
Suddenly everyone on the plane became extra nice and the man’s impatience evaporated.
No sooner did the man get to his seat as Andy got resettled when another man came along and it was discovered that Andy’s assigned seat was in the row behind him. The man whose seat Andy was sitting in laughed and announced that he would sit wherever Andy had been assigned.
By now, all the passengers around us had transformed into a lighthearted positive energy.
The world is able to adapt but we are required to educate others and lead the changing of timing and rhythm with our own example.
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