Miserable Day, Great Meeting

Last Wednesday, we gathered together, a spirited group of hearty souls. It wasn’t a wintery cold day, but the rain was coming down in buckets, making driving a hazard and walking, just miserable. For that reason, I was pleased to see 12 friendly faces walk through the door.

This was our second no-speaker session in a row, and I think that to do so was a great choice. As much as we learn from our speakers, we also learn from each other. If misery loves company, this session discussing the odd “other gifts” Parkinson’s provided plenty of both.

Fact: Parkinson’s presents differently in different people. Some have pronounced tremors, some have gait and balance issues. Right from the beginning of diagnosis, the effects are not common in all. PD makes itself at home in your body long before it announces itself. Loss of one’s sense of smell, depression, anxiety, a clear, constantly runny nose can all occur years before the disease announces itself. By that time, much damage has been done; it’s not a fair fight.

Fact: The variety pack of symptoms can include dystonia, a painful cramping of the muscles, slow movement and balance issues. Many doctors don’t know how Parkinson’s impacts us in ways beyond tremor and balance. There are so many non-motor symptoms: vision-related issues, sleep issues, bladder aspects, and voice softening. I’ve been told leg pain at night is related to running out of dopamine. Shallow respiration at night can be caused by limited dopamine to the intercostal muscles and the diaphragm. [ See The Muhammad Ali Parkinson Center 100 Questions & Answers about Parkinson’s Disease, by Abraham Lieberman, MD or read this on the web .

We are clever people who, even though we aren’t sure why we have a problem, can still find ways around it. My handwriting is getting worse, not only a result of me scribbling my name at the store checkout after swiping my card. So when I have to write a lot of notes, I get on the computer and make a card that expresses my feelings. Then I just add a quick personal note and sign.  I know people who have made their own modifications to spoons. One had his son design a walker with a light that helped him when he froze. Share other ideas if you know any.

Thanks, ladies, for a great couple of meetings. I’m sure there’s a lot to learn from next month’s speaker, too. See you in March.

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