Parkinson's Journey

This is for all those people with Parkinson’s disease who can’t seem to make others understand what’s going on in the mind of a PD patient.

I’ve personally heard of people with PD who actually live with others who don’t believe they have PD.  You can call it denial. You can call it ignorance. You can call it whatever you want, but who in their right mind would want to pretend to have Parkinson’s disease?

Pretend to fall. Pretend to stutter. Pretend to drool. Pretend to whisper. Pretend there is no skunk in the room. Pretend to shake so that every eye is on you. Pretend to look mad. Pay me thousands of dollars to pretend I have PD in a movie – no millions – and I might consider it, but to pretend day to day to have a debilitating disease? Give me a break. And, wouldn’t someone who’s pretending rather spend thousands of dollars on a vacation, rather than give it to a doctor?

Here is the latest comment I’ve heard one person say to a friend: “It’s like something’s wrong with your brain.”  Gee… ‘Ya think?

Every morning we wake up and gather the strength to get out of bed. We don’t just pop up like a toaster tart and stretch like Jane Fonda. No – we push ourselves up –our stiff and sore selves and don’t even consider the stretch for fear of the muscles cramping up when we even think of doing such a thing. 

We shuffle to the bathroom like a weighted penguin and thank God for the person who invented elastic waistbands.  We shower, washing the same frame as always, but taking twice as long as it once did, not so long ago. We brush our teeth with electric toothbrushes so we don’t tear our gums apart should the tremors take over this task.  We dress, again taking twice as long as it once did and sometimes needing help.

If we haven’t downed our mornings medicinal cocktail, we choose now. It varies, however, depending on who you are and the doctor you have and what’s going on.  Me? Nine for breakfast, five for lunch, five for supper and three for bedtime. Mmm, mmm good. And did I mention the side effects that the medicines cause?

You go on with your day. Everyone’s day is different as one person may be having a good ‘on’ day with their meds working great, while another is having an ‘off’ day where their meds are in need of adjustment or perhaps they just don’t work too good anymore.

You act crazy where once you may have been seen as calm and quiet. Perhaps it’s the PD. Maybe it’s the realization that today, this day, is the time to enjoy life.

I’ve heard it said that with Alzheimer’s, the patient doesn’t recognize family or friends after a while, whereas with Parkinson’s disease, family and friends may not recognize the patient. They act different. They think different. Maybe we’re just trying to confuse those we love and are pretending to act different and see if they notice.

If you know someone who says they have PD and think they are pretending, please think again. They’d much rather pretend to be Cinderella or Prince Charming and live happily ever after.