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.

 

Team Parkinson’s – The Captains, The Players, The Benchsitters, and The Fans

Whether you have had Parkinson’s disease for awhile, have been newly diagnosed, have been diagnosed with Young Onset Parkinson’s disease, etc., sooner or later you’re going to want to talk to someone about it who really understands – someone who’s been there already on the journey with this Little Monster.
 
A support group can be your lifeline because it is like a team. If you think about it, the best teams are those that work together and are not made up of players who seek to go solo and feel they can do it all on their own. Like the old adage, “There’s no “I” in TEAM.”
Every team has a coach. Someone who knows the game well. Someone who has played the game before. Maybe even already coached other teams in the past. Someone who can show you the best moves. Show you areas you can improve.
Every team has a captain – a peer who leads, can keep things going, encourage the team to do their best and play to win even though they themselves are playing the same game, win or lose. They have a winning attitude. They play to win.
And in order for the team to perform well, each player needs to be ‘in the game’. Just because you’re part of the team in number, doesn’t necessarily mean you’re ‘part of the team’. Bench sitters don’t contribute a whole lot in terms of playing the game, but they can. Instead of sitting in a puddle of pity or with an attitude of anger, they can be cheering on the others who are able to play hard this time around. They can have a cup of cold water ready for the next player who finds himself needing to sit on the bench a while. They can support and encourage their teams mates making their role invaluable.
 
Of course teams are made up of the players themselves. Some seem to play in every meet, game, match and the like. They appear “better” but  they are not more valuable for we all contribute in some way, in some capacity for the win – the cure.
Players are ‘equal’. The quarterback can appear to be the star but there’s no way he’s going to make it to the end zone without the support and assistance of the rest of his team. A pitcher doesn’t play alone in the game of baseball. Even sports that appear to be played ‘solo’ – tennis, marathons, boxing, etc – are all part of a team of some sort.
Players are constantly working together, fighting together for that win. Maybe one player will be able to run the length of the court today and even make. That winning basket, but tomorrow they may be benched due to an ailment or injury.
If you’re a player on Team PD, still able to move freely without many constraints, don’t forget about the bench sitters who long to be in the game, but find themselves ‘benched’ for now. They may have a lousy attitude, or have a positive one. Either way, they are still part of this team  and in great need of some encouraging words. 
 
And remember, for every team, there are fans. They come out, sit through the tough plays and cheer on the sidelines. They are there in the rain, the cold and the biting wind. No matter the weather, they still show up for ‘their’ team. On Team PD, fans can be friends, family, caregivers.

Whatever part of the PD team you’re in, you’re not playing in this lifelong game alone. Get into a support group, find a ‘coach’, a ‘captain’, someone who’s been there and can encourage you in your game. Remember… You are not alone.