For those who care for someone with Parkinson's disease

Parkinson's disease Caregiver Commentary

Teaching and spreading awareness
By Al Labendz

Editor's Note: Al corresponds on our Forum, using the screen name LOHENGR1N. He was diagnosed with Parkinsons in 1986.

Of the many challenges facing the Parkinson Community, I was again reminded today of understanding. Today, class was held at the dental clinic. I had a panoramic X-ray taken (my first ever). Now I don't know for sure if the assistant ever had a Parkinsonian as a patient before or not. I would guess the answer is NO. I do know she never had one like me. I've been blessed with a quick wit and the gift of gab, both of which Parkinson's Disease is unrelentingly trying to wrest away from Me. (that however is fodder for another time and story).

Positioning me in front of the machine, relieving me of my cane and instructing me to hold on to the handles, she said, "Now put your feet together?"

"This could be a problem," I replied, as the old familiar wobble began. "I have Parkinson's disease," I reminded her.

"You're OK, just hold the handles," was the reply. "Now move your feet forward so you feel like you're almost tipping over backward."

"I just told you I have Parkinson's, I feel like I'm tipping over with my feet apart and standing upright half the time," I retorted.

ting "Now, I want you to lower this shoulder a little, relax the muscles and lower your shoulder," she says while pats my right shoulder gently.

"I can't!" I tell her.

"Sure you can, relax your muscles and lower your shoulder."

Looking her in the eye and using my soft Parkinsonian voice I said "I can't, call it posture deformity, freezing, dystonia or whatever, this is how Parkinson's has warped my body and I can't do anything about it."

So, she pushed a button and raised the machine a bit. OK, I think to myself, maybe she is learning and will remember for next time or next patient.

Now I'm at the ready. Wobbling, unsteady, feeling like I'm falling backwards, tremors trying to shake the machine from it's anchor bolts in the floor and as she rounds the corner to turn on the machine, she tells me "This will take a couple minutes, stand still and don't move until the machine stops."

!!?!?!! Ugh! sigh!

Teaching and understanding: We have to understand, you with Parkinson's and you, our caregivers. We have to teach. We owe it to those who will come after us, our contemporaries and to ourselves.

We must educate and illustrate the effects this disease has on its victims and their families.

We have this chance to teach through our daily interactions with people. I'm not saying that we hop on a soapbox and preach all day about Parkinson's disease but, if someone holds a door, offers help or just seems to notice and take interest – that is a chance to teach and educate.

I can only teach how the disease affects my life and you can only teach how it affects yours. Together, we can teach how it differs from case to case and perhaps, in time, we will create a better understanding of this strange disease.

We should convey to the public just how difficult finding a cure is. Tell them it is not just about the tremors, jerky walking or loss of balance. We're in this together; we might as well work together on education and understanding – striving for a cure.

Perhaps we should form social clubs and travel in groups. Imagine, instead of the rumble of Harleys there would be the clicking and tapping of canes and walkers – announcing our arrival from yards away! We could hold a 500,000-person shuffle to Washington! Boy oh Boy the old brain's clicking now!

About the Author
Al is a Parkinson's patient from Massachusetts. A divorced, father of three and Grandfather of four, he lives with his Service Dog in the Berkshire Mountains in the far western end of the State. Al was a welder before Parkinson's changed his life. He has, during his battle with Parkinson's, strived to educate people, legislature, medical field, and general public about Parkinson's Disease and it's effects upon patient, family and loved ones. To that end, Al has served as the State and Congressional coordinator for Parkinsons Action Network in Massachusetts.

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