Parkinson’s Disease, a shaking palsy, a ceaseless dance, a movement disorder, the progressive degeneration of the dopamine producing cells of the substantia nigra – and it is so much more.
It traps us in our bodies in ways that are deceptive. It robs us of our voice so that a common phone call becomes a struggle. The disease masks our face, many mistake the blank emotionless look and believe we’re not cognizant or we are apathetic and uncaring while. All the time we struggle to let them know there is someone trapped inside.
Our medicine causes problems, seemingly more hindrance than help at times. A constant juggling act to keep up with the on going death to those cells that produce dopamine so important to the functioning of our bodies. Our Caregivers and Partners are also trapped with us. Day by day, their lives shrink as they withdraw with us. W tend to avoid the world more, as the “good days” become few and we transcend to good hours or times.
Over time we, develop a warped sense of humor or at least I found I have. I often find myself flippantly try to defy this intruder called Parkinson’s – this thing that has taken over my life. Subtly and sometimes not so subtly waving a one fingered salute in its face. If I’ve given pause for someone to smile or chuckle while reading one my commentaries, then I’ll consider the time I rambled on, well spent.
There is a time for everything and to everything a season. It is now time to shift focus back to a Caregiver’s perspective. I step aside for the next commentator. But… if a warped and irreverent tale is needed, I can be found.
I always try to wrap it up returning to the title of each entry. Like all Parkinsonians I’ll just shake away now.
Editor’s Note: Al corresponded on our Forum, using the screen name LOHENGR1N. He was diagnosed with Parkinsons in 1986.
Al was a Parkinson’s patient from Massachusetts. A divorced, father of three and Grandfather of four, he lived 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. During his battle with Parkinson’s, he strove to educate people, the State legislature, medical field personnel, 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. Mr. Alan Stanley Labendz, 67, of Adams, died on Friday, March 27, 2020, at his home.