Guest blogger Bev Ribaudo was diagnosed with Young Onset Parkinson's at age 47, but her symptoms began in her late 30′s. Having always been an optimist, Bev decided to fight this disease using humor, sharing her observations at Parkinson's Humor.
Michael J Fox likes to say Parkinson's disease is like being stuck in the middle of the road, waiting to get hit by a bus. You don't know when or how hard you will be hit.
Well, I say, "Don't stand there doing nothing, climb on the bus and drive it yourself." Be PROACTIVE. Take charge of your Parkinson's. Pay attention to what your body is saying to you, get off your duff and do some stretches or exercise. Any thing is better than nothing. A good way to start is by charting your symptoms. Want to know how? Read this:
Most of us with Parkinson's disease make the same mistake when we go to see our Neurologist. We have a conversation like this:
Doctor: How are you doing?
Doctor: (to himself, then why are you here?)
Sounds like the start of a funny joke, doesn't it?
It does, but it's not funny.
I used to have conversations like this with my Neurologist until I realized that I have to know EXACTLY what is going on with my body so that I can help him to help me. He can't look at some blood tests to see how I am doing. He needs input from ME.
About a week before my last appointment, I made a symptom chart and marked on it every hour or so as to what exactly was going on with me. To make it simple, I made columns that depicted my various problems and chose a number between 1 and 10 to depict how I felt. I also noted when I woke up, took medications, ate, napped, and other general feelings.
This is what my blank chart looks like.
I made it using Works, which is the database software on my old PC, but you can use anything. There's probably even be an app for your phone. I would have written it on a piece of paper, but my writing is worse than any Doctor's.
After a few days, I noticed some unusual things:
- I would get a headache when my medicine started wearing OFF, then a stiff neck. These both disappeared when I was ON.
- I was wearing OFF after about 4 hours but taking doses 6 hours apart and it was taking about 90 minutes after a pill to feel ON again, so I was OFF about 7-8 hrs a day.
- When I was OFF, my nose would be all clogged up but I could breathe just fine when I was ON.
- I always felt better right after sleeping or eating a chocolate chip cookie. I thought about just eating cookies, but then I'd get fat and my Wonderful Husband would leave me for a skinny Parkie.
I might not have ever noticed these things had I not taken the time to chart exactly how I felt during the day.
I reported all of this (well, I left out the cookie part) to my Neurologist (who was very impressed) and we, yes we, decided to lower the strength of the medicine I was taking and increase the number of pills I take. I went from taking three 150's a day (6 hrs apart) to taking five 100's a day (4 hrs apart) and I increased my ON time to almost the whole day and I am only taking 50mg more dopamine type medicine.
Consider charting yourself before your next Neurology visit and pay real close attention to how you feel after eating a chocolate chip cookie (maybe I have found a cure).