Symptoms of Parkinson’s Can Make Life Hard

We purchased a large, motorized reclining chair.  It fit into our housetruck with about one inch to spare and loomed large in our tiny kitchen and living space of 64 square feet.

During the hardest years, when Andy was disabled with Parkinson’s disease to the point that he was mostly housebound, the strategies to live well shifted from persistent experimentation towards wellness into simply seeking comfort.

When this happened, we made it a point to remember to remain open to the possibility that he could still get better even though it did not look likely.

Nobody knows how the course of an illness will proceed. I have seen that when patients give up on their chances for improvement, their chances of getting better decrease. The mere thought that diseases are labeled and accepted as “incurable” belies the mystery behind the human experience of health and wellness. It is a small thought and a vast difference to say to oneself, “nobody knows” instead of “this is the end.”

When I saw that Andy was unable to get up out of a chair and needed me several times a night to help him move into a more comfortable position in bed, could no longer get food into his mouth because of the extreme shaking of his arms and hands, it was obvious he needed comfort care.

So we got creative with comfort.

We purchased a large, motorized reclining chair.  It fit into our housetruck with about one inch to spare and loomed large in our tiny kitchen and living space of 64 square feet. It worked well for Andy to spend a lot of time in this chair because with a push of an easily reachable button he could change his position easily. The chair was cushy enough to be very comfortable yet had built in supports to keep his body posture from crumpling. We placed the chair next to the door with an oval window for light and also fresh air. The TV was mounted on the wall about six feet away and Andy had large over the ear wireless headphones so the TV did not ruin my peace.

Andy loved to read more than watch TV but holding books steady enough to read them was a big problem. Our creative friend and part of Andy’s team, Marianne, came up with a solution. She sewed him several beanbag weights in different shapes and sizes. Andy could strategically place the beanbags on his books and the weight stilled them enough so he was able to read.

That chair and scenario became Andy’s home base for days that turned into weeks, months and years. Comfort is relative to what is possible and looking back, I know Andy was comfortable during those years. At the time, we never knew if the comfortable chair was going to be the end of Andy’s story or not.

I had to keep reminding myself, “nobody knows.”

For Andy, it wasn’t the end and eventually surgery allowed him to live a full life again. We did not let an immediate and desperate need for comfort diminish our hope and belief that he could get better.

What are you choosing to believe about your life and health?

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2 thoughts on “Symptoms of Parkinson’s Can Make Life Hard

  1. Michelle, you are a brilliant writer! Ed and I came to see you back in 2016, when we were just thinking of moving to New Mexico. I hope your and your family are doing well. You definitely express your life beautifully. – Merry Rosenfield

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