Parkinson's Disease With An Attitude
71When I'm On I'm Really On, But When I'm Off ...
Let me cut right to the chase. When dealing with something like Parkinson's Disease, it helps immensely to keep an upbeat attitude and a sense of humor about things.
Parkinson's Disease is progressive. It does not go into remission and (so far) there has been nothing found (and confirmed) that can slow down the progression. The person with Parkinson's can only take drugs, drugs, and more drugs. The medication merely masks the symptoms.
When my body is responding to the medication and I'm feeling great, I'm "on" and for the most part my body moves pretty well. I can play tennis, basketball, and go running.
When my body isn't responding as well as it should, I'm "off."
As the disease advances, the distinction between the "on" and "off" periods becomes sharp. Diagnosed almost ten years ago (at the age of 38), I am at the point now where the difference between being on and being off is huge.
So you ask, "Well, when you're off, can't you just take more medication?"
It's not that simple.
First of all, it takes the body a while to absorb the medication and to respond to it. Second, there are side effects from the medication, including (depending on the drug) drowsiness, amplification of obsessive and compulsive behaviors, difficulties in concentrating and focusing, hallucinations, constipation, and other such glamorous things. Third, studies have shown that the dyskinesia (uncontrollable jerking and twitching of muscles) is greatly exacerbated with the increase of medication.
For me, diet is a big factor. Protein seems to get in the way of the effectiveness of the drugs, as does the amount of food. Sometimes, though, even with little or no protein and small amounts of food, I'm still off.
What is it like to be off?
The closest parallel I can come up with is something like this: being off is as though you are trying to do everything underwater; and your left arm is duct-taped to your body; and your hands are numb and have little dexterity; and your gait looks like a sad attempt at doing a moon walk; and you don't have a sense of balance. In addition, your muscles may ache and you may have a significant tremor (oddly enough, I don't have much of a tremor in general).
Otherwise, you feel on top of the world!
All kidding aside, it would be so easy to let this stuff drag me down, but I've found that with a sense of humor and a positive outlook I can keep going, day in and day out.
Last night, my wife and I worked on the new chicken coop that we're building. We spent perhaps two hours out there, hammering and measuring and sawing. I was totally off the entire time. I would shuffle across the (big) back yard, from the coop to the garage and back again. I could still function; I could still get stuff done; but my wife and I were both laughing at how slowly I was moving.
The shuffle walk is very much like the walk Tim Conway does when he is portraying an old man. To get started, I lean forward, and as my body starts tipping my feet start moving. It's weird trying to stop though. Sometimes I have to catch myself by grabbing on to something in order to slow down.
When my balance is bad and I tip over, all I can do is laugh. It's a little embarrassing (I've fallen twice, once at work and once at home) but I've just got to shrug and keep going.
I'll unashamedly stand up and tell you that God has blessed me with a great attitude. I'm fully aware that I'm still the enthusiastic guy I've always been, and I feel that he is calling me to write in order that I may share this with you.
Everybody's got something goofy going on in his life. It could be an illness; it could be financial woes; it could be a struggling relationship; it could be job pressures; or it could be all those things.
You've got one life (at least I've never met anybody who is here for the second time around!), and we need to make the best of it that we can.
When I wake up in the morning, I will praise him.
When I go to bed at night, I will praise him.
Win or lose, I will praise him.
This morning when I got out of bed -- just like every morning -- there was a mighty voice calling across the valley, taunting me and daring me to take him on. I've got my sling and some smooth stones. Excuse me while I go fight the giant.
With God's help, I already know the victory will be mine.
Check Out These Books on Parkinson's Disease
|
|
Parkinson's Disease: 300 Tips for Making Life Easier
Price: $7.25
List Price: $16.95 |
|
Delay the Disease -Exercise and Parkinson's Disease
Price: $19.95
List Price: $19.95 |
PrintShare it! — Rate it: up down flag this hub
Comments
Nutuba,
Well, I just stumbled accross your hub and I praise God for that. My husband has Parkinsons and we laugh a lot too - but honestly, there are times I feel like throwing in the towel. And even tho I am not the one with parkinsons there are many mornings I get out of bed and move forward to fight the giant. My hope rests in Jesus Christ alone -I can't even rely on myself - only Him. I am signing on as a fan -thanks for writing this hub -it is encouraging.
very nice hub
HI NUTUBA, I DIDNT KNOW YOU HAVE PD. I WAS ON THE VERGE OF GIVING UP TODAY, I AM TIRED OF THE STRUGGLE WITH PD,I RAN ACROSS YOUR ARTICLE, READING IT MADE ME FEEL BETTER, THANK YOU, MARY DIANNE ANGLIN













dineane says:
6 months ago
Wonderful hub, to match your amazing spirit! Best wishes to you!