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)

This Is What Young Onset PD Can Look Like

Not so many years ago, I was taking 27 pills a day to curb my Parkinson’s symptoms. That number didn’t include the supplements that I was advised to take along with my medication. You take some of the pills to mask the symptoms and you take the others to combat the symptoms caused by the pills that are aiding in making life a bit ‘easier’. That is some 700+ pills a month. Over 700 pills to help you stop shaking so much, to keep your mood somewhat elevated, to ease the physical pain that no one else knows is there, for aiding in the reduction of rigidity in your muscles, and more. This is what PD (Parkinson’s disease) can look like.

My symptoms, when going through my medical history with my Movement Disorder Specialist (EVERY PD patient needs one of these, if at all possible) over the years, he discovered that my journey with PD began way back in high school. Yes, that time of playing in the band at Friday night football games and Thursday night basketball games and wondering why I felt like I was trembling inside while sitting on the bleachers or marching on the field or studying for exams or whenever they (the tremors) felt like making themselves known.

Up to 44% of those with PD have experienced internal tremors. This is also what YOPD can look like. In my early 20’s the tremors continued and I started having gut troubles. I didn’t think much of it, but looking back on my medical history my doctor felt confident tthat PD was playing a quiet role way back when.

Fiona MacDonald of Science Alert says, “Researchers have noticed that people with Parkinson’s often report…digestive problems, up to 10 years before they notice tremors. There’s also evidence that people with Parkinson’s disease have different gut bacteria to other healthy adults.” This is also what PD can look like – but you can’t see it.

I began reading through my journals (kept from way back when) and began to see my symptoms actually did begin in high school. But they were subtle. They were unpronounced, minimal, silent, unassuming. There was some rigidity. Internal tremors. Gut problems. Not much but enough to put a connection to. This is what Young Onset Parkinson’s Disease can feel like.

When I was 32, I was misdiagnosed with Lupus and medicated with pills that didn’t make a difference. This is not uncommon.

I visited my regular doctor for twitching in my fingers and shaking in my hands, the right one most predominantly. I was 44 by then. I knew something was wrong. She sent me to a neurologist. I didn’t like his diagnosis nor his bedside manner so I found a Movement Disorder Specialist (MDS). His diagnosis was the same but his bedside manner much better than the neurologist, so I stayed with him.

For the sake of pity, I often don’t let people know how I’m really feeling. People treat you different when they know you have a disease. I don’t necessarily want to be treated different. My heart is still beating. I am living. I have too many weeds yet to pull, too many roses still to prune. I have grandchildren to watch grow and (hopefully!) more to be held. I have things to paint, to fix, and to make. I have birthday cakes to bake, popsicles to slurp, and summer days made for catching ladybugs. I don’t have time to wallow in a sea of sorrow over a disease I have but would rather not. But – since I do – I recognize that there are times (and they are increasing in number) when it’s okay to be treated different and need help. Really okay, because…

that’s what PD can look like.

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.