An Acrostic: Just What Is Parkinson’s Disease?

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Sprinkled Pink Photo by Sherri Woodbridge, 2016

Painful.

Always present. Always. Even if ‘evidence’ is not outwardly apparent.

Relentless. Mentally, physically, and emotionally.

Kin-friendly. While research shows the numbers to be close to nil for PD to be hereditary, researchers now think that about 7 or 8 percent of patients with PD have a direct genetic link.

Individualistic. No two cases are exactly alike.

Non-discrimitory. Anyone, any age, any race, any shape or size, any language, any gender, anywhere, any hair color, any time, day or night. You get the picture, right?

Shuffle-walking-causer

Oblivious to how I may want my day to go.

Not very nice. No. Not at all.

Shaker-maker

 

Drool and depression inducer

Icky, icky, icky

Stiffness and slowness creator

Enhancer of humility in so very many, many ways

Apathy-maker

Subject to dystonia and dyskinesia and great dislike by its recipient

Exactly that aforementioned above and much more!

Guest Post for PD Awareness Month…

April is National Parkinson’s Awareness Month, by Chuck Foster

My Parkinson’s journey began about forty years ago when my grandfather was diagnosed with the disease. I watched him struggle as tremors and dexterity worsened. Eventually, common tasks like buttoning a shirt became impossible without help. And walking evolved into a slow, painful, awkward experience. But I never heard him complain. To the contrary, he maintained an incredible sense of humor, dignity, and grace notwithstanding the inelegant demise the disease suffered upon him during his latter years.

Nine years ago I began to notice an occasional, odd tingling in my left hand. Over time the tingling became more sustained before changing into full-fledged tremors. Finally, I visited a neurologist (when I was fifty-eight years old – I’m sixty-four now). I still vividly remember sitting in stunned disbelief when she said I had Parkinson’s. (Trivia question – the average age of diagnosis has fallen from 72 to 58 over the last couple of decades. Why?)

For medical geeks out there who may be interested in the pathology involved, Parkinson’s is caused by an irreversible loss of certain dopamine producing brain cells called neurons. By the time symptoms appear, 80% of the brain cells have already died. Notwithstanding lots of promising research with things like stem cells and deep brain stimulation, the disease remains incurable.

Adding insult to injury, about a third of all Parkinson’s patients develop dementia.

Symptoms (tremors) can be moderated through a therapy of dopamine drugs for a while but eventually they lose effectiveness as the disease progresses. Forty years ago my grandfather took the exact same drug I currently take. Not a lot of progress in that regard.

And Parkinson’s is an equal opportunity disease, affecting more than ten million people of all walks of life around the world. About a million of those people live in the U.S.

Most people know at least one person personally who has dealt with the disease.

Some of the notables who have suffered (or currently suffer) from Parkinson’s include Pope John Paul II, Johnny Cash, Robin Williams, Linda Ronstadt, Muhammad Ali, Billie Graham, George H. W. Bush, Salvador Dali, Janet Reno, Sir Michael Redgrave, Vincent Price, and Michael J. Fox. The latter, of course, has courageously dealt with Parkinson’s for more than a quarter of a century. He has also led the charge in raising Parkinson’s awareness through the Michael J. Fox Foundation.

In my typical long winded way, I have finally reached the point of this essay.

In response to my diagnosis, I have taken up writing as therapy. (I’m even learning to use speech recognition software to type!)

Last year I wrote a short story about a soldier’s struggle with Parkinson’s entitled Morning Chemical Assault (http://www.crfenergy.com/morning-chemical-assault.html ).

This year I used the story as a means to raise $500 for the Fox Foundation by posting it to my Facebook page.

I wish each of you the best in your own Parkinson’s journey, whether as a patient, caregiver, family, friend, or in any other capacity.

Thanks,

Your shaky friend,

Chuck (a/k/a Alasdair)

I Don’t Feel Like It

I told a friend last night that I feel disconnected. Disconnected from the PD ‘loop’, ‘circle’, whatever. If you’re involved with a Facebook PD ‘group’, you know that there is a growing force of people trying to make a difference in finding a cure for Parkinson’s disease. They are trying to get people to step out of their comfort zones (for some) and get involved in fund-raising and bringing awareness to this debilitating disease.

However, I feel disconnected. Or perhaps a better word for it is… apathetic. Not intentionally. Not purposefully. Not willingly. I just do. And then I read this in the newest issue of the Northwest Parkinson’s Disease Foundation newsletter:

Barchester, UK – Apathy among people with Parkinson’s disease is a sign that the condition is getting worse, claims a new scientific study.

A new scientific study suggests that apathy shown by a person with Parkinson’s disease is a sign that the condition is worsening.

Research published in the Journal of Neurology, Neurosurgery and Psychiatry suggest that apathy can be caused by changes in the brain resulting from the condition, Parkinson’s UK reports.

The Norwegian study followed a group of 79 people diagnosed with Parkinson’s disease over a four-year period.

Commenting on the findings, Parkinson’s UK’s director of research Dr Kieron Breen said: “This is an important study that helps increase our knowledge and understanding of one of the common non-movement related symptoms of Parkinson’s.”

 

He went on to say that the charity’s own research had found apathy to be a common symptom, while understanding why people with the condition may be apathetic may help carers.

One in every 500 people in the UK has Parkinson’s disease, equating to around 120,000 people living with the condition, according to Parkinson’s UK.

So, perhaps my apathy is grounded. I surely hope not. Not now, not ever. I want to run this race in life well. I want to get to the end and know I did what I could with the opportunities I had and not look back with regrets. I want to be an encouragement to others and not a source of discouragement. But – sometimes we get too busy comparing our walk with others along the way. We feel inadequate if we aren’t doing what others are doing or prodding us to do. And that’s okay. Sometimes it’s not our turn to run. Sometimes it’s okay to walk and take your time. If we were all running at once, people would be getting shoved off the trail, knocked down and trampled on.

Maybe you’re discouraged today because you feel like you’re not doing enough to find a cure for PD or Alzheimer’s or Breast Cancer Research or MS or whatever it is you’re fighting. Maybe it’s your turn to walk. Maybe it’s time to take a rest on the bench and give/donate to someone who is more able to run this time around. Whatever it is – do something, no matter how small – even writing a note of encouragement to someone on the front lines right now, fighting for a cure. Just don’t let apathy take over and keep you on the bench.