April 27, 2011 by David Gillaspie
Your Parkinson’s Primer
With Parkinson’s in your life, the sun feels like it’s on a dimmer switch.
You don’t slide it down yourself. It’s the people you meet.
No one says, “Hi, my name is Joe. I’ve got Parkinson’s” like it’s a twelve step program.
If you know Parkinson’s, then you know twelve steps are just a warm up.
For example, if your wife or husband introduces you to someone new, you say hello. When you go to shake hands with Parkinson’s, yours is already shaking. Don’t be surprised if the other out-stretched hand pauses.
Remember the first time you held a baby? Someone handed their child to you and you responded as if holding broken glass recently glued together. You didn’t want to break it.
Eventually you discovered how to hold a baby. The same goes for Parkinson’s. Either the person afflicted, or their caregiver, learns to put others at ease. It takes a while.
Parkinson’s is unique in that you don’t get it in a specific region. There is no Parkinson’s of the foot, no Parkinson’s of the liver, or throat. With Parkinson’s, you get the overall coverage. What you notice is the tremor.
Some see a shaking hand and think, “that’s not so bad, it only affects the hand.” Except, there is no Parkinson’s of the hand. The same cause that makes the hand shake makes everything else respond. You just can’t see it.
Is a kidney with Parkinson’s in there shaking around; is a lung jumping all over the place? Or is their function changed by the disease?
Parkinson’s makes a difference in the entire world you live in, from people you meet, to your external show, to your internal activities. Digestion suffers, so does breathing and sleeping.
Probably the greatest effect of PD is on your relationships. Grown children will see you change from what they knew. Younger children will never know you as you once were.
Your spouse will go through the cycle with you, and that’s where the Parkinson’s patient spirit shines brightest. The uncertainty of the diagnosis is greatest in the patient, but amplified in the spouse.
Try to share the concern, even when you’re too tired to worry about someone else’s worry. If you’re the ill person, know that those closest to you want to help. They can’t help you stop shaking, can’t help your mood, but they can help if you allow them.
If your wife introduces you to one of new friends and the lady goes into an emotional collapse and leaves the room, don’t be offended. Maybe her husband was recently diagnosis with Parkinson’s and she hasn’t learned to cope. Maybe you’d do the same thing if the roles were reversed.
Those who turn from you are running from the reality of Parkinson’s. What they don’t know is you can’t outrun it. Eventually they learn. Will her husband have the same symptoms that frightened her? Will they arrive sooner than later?
The key to Parkinson’s is slowing down the process. An othopedic surgeon recommends a patient wait as long as possible before getting a knee replacement. Why go slow? Because procedures improve, for one. For another, you don’t want your new knee to wear out and have to do it all over again.
Parkinson’s will wear you out. The trick is slowing it down.
So, how do you slow Parkinson’s down? Medication. Diet. Exercise. It’s what we hear all our lives. Eat right, workout, and take your vitamins. Think of the Parkinson’s medication schedule as vitamins for a healthier, happier life.
This is where you help your partner help you. Ask them to keep track of med times in case you forget. Ask them to cook softer food in case something gets stuck on the way down.
You’ll know they ‘get it’ when they come home with a bag of hamburgers and throw them in the blender with chicken broth and hit the puree button.
You’ll know they ‘get it’ when they stop asking you how you feel before you go out together.
You’ll know they ‘get it’ when you both go to Paws for a Cause on Saturday, July 16, 2011.
Mark it on your calendar and start getting ready. Your dog doesn’t want to come in last any more than you do.
What used to matter before Parkinson’s, still matters. That light will never dim.
By David Gillaspie