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Tuesday, September 6, 2016

Driving Your Own Parkinson's Bus

I see Dr. Scott J. Sherman, my Parkinson's disease specialist, once or twice a year. It's not that I don't like him, I do. He has a great sense of humor and he seems to know more than most Neurologists about Parkinson's and DBS. But he's 240 miles from home, and to be honest, there is no medical reason for me to see him more often. 
Dr. Scott Sherman and YumaBev
There are 24 hours in a day, which means there are 8760 hours in a year and I spend maybe ONE of those hours with my Parkie Doc. That means my Parkinson's disease is managed by ME for the other 8759 hours or 525,540 minutes of each year.

My ONE visit with Dr Sherman in 2016
Dr. Sherman has no idea whether I am taking my medicines as he directed. He has no idea what my current DBS settings are. He has no idea what my symptoms are like, except during those few minutes that I see him. My Wonderful Husband doesn't even know exactly what I go through each day and he lives with me!  

It is up to ME to figure out what works best for ME. If the Doctor says, take this pill three times a day, it's up to me to figure out what time works best for me. Do I take it every 8 hours or perhaps 6 hour intervals will work better? Do I need the first dose as soon as I wake up, or maybe I don't need it for several hours? Maybe taking that last dose right before bedtime makes it more difficult to go to sleep or maybe I need to set an alarm and have a dose and a glass of water on my nightstand. Maybe I only need two a day and not three or maybe I need really four. I'm the only one who can figure this out. 
These were my settings a year ago!
It is the same with my DBS settings. The Doc gives me parameters for a reason, so I can tweak the settings myself. Trying to figure out the best combinations of settings and medicine takes time, but if you get it right, your quality of life will improve.

Michael J. Fox has said something similar to: Living with Parkinson's is like you are standing in the street, you know a bus is coming and that you will get hit, just not when or how hard it will be.
Well, I say, "Don't just stand there waiting, jump on the bus and drive it yourself!" Take control of your disease and figure out what works best for you!    

Drive your own Parkie Bus!!!
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  1. My husband has Parkinson's. I'm suggesting to him that he follow your blog as I like how you think.

  2. Great article! It took me a couple of years to discover who was driving the bus. I do it & my Dr is there if I need her.

  3. I just love the punchline of this: Well, I say, "Don't just stand there waiting, jump on the bus and drive it yourself!" Take control of your disease and figure out what works best for you!

  4. Yes I agree totally - our Neurologist will help us the best he/she can - but the choice is ours to use best that we are offered and to take control of our own PD Life. We can't expect someone to hold our hand every minute of the day - if we use what we are given to get the best outta our PD problem life then surely we can live with what we have to endure - we may not like it but it beats havin' nothin' at all.