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Tuesday, January 3, 2012

Charting Parkinson's Disease

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?    Patient:  Fine   
Doctor: (to himself, then why are you here?)  

Sounds like the start of a humorous 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 report properly.  

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 meds, ate, napped, and other general feelings.   

This is what my blank chart looked like:
Clicking on this pic will make it larger


I made it using Works, which is the database software on my old PC, but you can use anything.  There might 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. (if you don't know what ON & OFF mean, read Learning the Parkie Lingo)

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).


Clicking on the colored words will open a new window and take you to a different story or link.

Thank you for reading this story, I hope you enjoyed it. This is just one of a hundred stories in my book, Parkinson's Humor - Funny Stories about My Life with Parkinson's Disease. Please consider purchasing a copy from Amazon.com or your favorite online book seller.  Thank you and have a Happy Parkie Day!

16 comments:

  1. Brilliant post. Too bad chocolate chip cookies can't cure Parkinson's disease!
    The Parkinson Princess

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  2. I use a chart for my blood sugar. My friend Bill made it in excel and works great. It Does help the Dr quite allot. I find making a list of questions for the Dr before you go works also. Seems once we get there we tend to forget to ask questions unless we have a list.

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  3. Great idea. the more we can inform the doctors can only help! Who knows better what we are going threw then we the Parkies.. Thanks for the posting..

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  4. A very good idea. I am yet to be so clever. I tend to walk away from my neurologist forgetting to ask one of those questions that was erking me for months!

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  5. What really is so useful about this chart, you have a great instinct how to diffentiate between "other issues" and "parkie issues" and a funny way of telling your story: the chocolate cookies! Nina

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  6. Bev,
    I found your blog just in time! Hubby has PD and with the addition of Ropinerole has been stuffy, like having allergies, which he never has. His neuro said that is not one of the side effects of any PD meds. Thanks for validating that this may very well be related!! Check out our group here in SoCal at www.rpsgca.org and feel free to stop if you ever get to our area. Great blog you have here!
    Susan

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  7. Excellent idea! I will be doing this for my next neuro appointment in March. Especially since I get the lovely "white coat" syndrome and forget everything that I was going to say in the first place.

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  8. WTG Bev! Great advice, Allie

    Thank you - what a good guide! My husband is PD and I'm always looking for ideas. Carol

    Thank you, This was a great help and I'm excited to share this with by husbans who has Parkinson. GSA

    Going to Neurologist for First Time in a couple weeks, This was a Great Idea! Thank You! Eric

    I have noticed that about chocolate cookies too. but thought it was just the sugar high. going to emory to see my doctor in a couple of weeks , I will try the chart because I never know what to tell him so he can really understand what and how I feel. I guess you have to have this diease to really understand the symtoms to get the full picture. thanks Craig

    Bev thank you very much it ´s a good idea I will do this for my next visit to my neurologist. Beeing abel to use the humor is very importsnt. Best regards Hrafnhildur from Iceland

    Comments from the MJFF Blog

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  9. interesting ....I am gonna do this for my next appt., good advice!!!!

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  10. That is a very good idea because the first part is how the neurologists have been thank you for great info * hugs Sherri

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  11. I'll be doing this next time. Thanks.

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  12. I FUNNY HOW SYMPTOMS AND SELF CURE SORT OF STUFF VARIES CHOCOLATE GIVES ME AN ABSOLUTELY BANGING HEADACHE MORE OR LESS INSTANTLY SO THE ONLY CHOC I EAT IS KINDER EGGS OCCASIONALLY COZ BUILDING THE TOYS IS A MAJOR CHALLENGE AND THE MAIN THING I EAT WHICH IS RECOMMENDED BY MY DIETICIAN IS MILKJ AND BANANAS AND BLACKCURRANT JUICE AND PEPPERMINTS WHICH ARNT REC BY THE DIETICIAN BUT MY SENSE OF TASTE HAS PRETTY MUCH DIAPPEARED SO I LIKE THEM. IS ALMOST THE REVERSE OF A DIABETICS DIET LOL. I GET BAD PHOTOPHOBIA WHICH IS ALSO REDUCEABLE BY EATING RAW MUSHROOMMS WEIRDLY ENOUGH. I ASM A LAB RAT 4 A BIG PHARMA CO SO I FILL OUT A CHART/DIARY APP THAT THEY SUPPPLIED 2 ME SO THEY CAN WORK OUT THE EFFECTS OF THEIR PILLS AND POTIONS

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  13. NOW I can explain my chronically stuffy nose!! It pre-dates my diagnosis by about 7 years!

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  14. A great idea! I would like to suggest adding foods that you are eating. For the last 2 months I have noticed that protein has exacerbated my symptoms greatly. Now I pretty much eat no meat and nuts do the same thing, Not sure what I'll be hunting and fishing for this year that I can eat!

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  15. That's a great idea Bev
    Carl

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  16. Dark chocolate has appeared to help the hubby during his off time. If I remember correctly some components of dark chocolate has been linked to increase dopamine.
    Crystal

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