Life then Diagnosis then Decision
According to the National Institutes of Health, 41 of every 100,000 people will deal with Parkinson’s by their fourth decade of life. By age 80, 1.9% of people will confront Parkinson’s realities with a diagnosis. That’s a problem. However, Parkies are part of a unique sect of the disability community. We might have been born this way, but we had to adjust to this problem in the middle of our lives since we knew something “different.” We had all of these plans, and then… BAM! We entered into the greater disability community with different concerns and attitudes than people with other earlier-onset conditions.
Life before diagnosis
Sometime before Avalanche Day, we may have encountered a tremor for our first pre-diagnosis symptom (I had my first tremors in 2011, but I remember rigidity since at least junior high). I was also a “frequent urination specialist” a few months before I noticed my tremors, but who knew that was connected? The urologist I went to didn’t.
My point is that many of us had a lot of things going on in our lives before this incurable, progressively degenerative neurological condition came about. Now, we have to wrestle with its intentions. However, this isn’t true just for Parkinson’s. My gram inherited Alzheimer’s. Cancer causes a lot of adjustments when it comes knocking. I also think of my former student who lost his legs in an ATV accident. In fact, when we look at a lot of conditions on the Health Union community list, many people deal with a “tough break” from life.
This doesn’t make us better or worse. It just makes our problems unique to our community.
What we all have in common is that at some point in life, a doctor diagnosed us with PD. Here, we lost some of our abilities, felt down about it, and didn’t know how to identify ourselves anymore. Our symptoms stockpiled, and we became a newer us. Some of us became embarrassed to be seen in public with shaky hands or mouths that “word fish.” We gave up careers. Our families and friends watched us suffer. Some of them left. We changed and became a still newer version of us.
It wasn’t a barrel of monkeys.
In there we had to learn to cope
There are lots of ways to do this. Therapy / counseling is a very good one, and I’m starting it soon.
I was an English teacher, so I like reading and analyzing songs / movies. I like the line in The Shawshank Redemption that says to “get busy living or get busy dying.” I like Tim McGraw’s lyrics in “Live Like You Were Dying.” I like saying, “I have Parkinson’s, but it doesn’t have me.”
For me, I live my life with a lot of stoic/hardcore philosophy. I choose and share tough mantras to keep myself (and hopefully you) from being scared, depressed, or resentful of my situation. If we can control the equation, we should. This doesn’t work for everyone, but I know it will work for others Parkinson’s Warriors. When I can’t be tough, I watch stupid movies like Anchorman 2 to laugh uncontrollably. I spend time with wife, family, and friends. I get between the trees.
Sometimes, I need a hug or empathy. That’s a great thing. I hope you find all of these things, too.
To me, this Stockdale Paradox world is my answer since I don’t like any diagnosis with the tag “incurable, progressively degenerative neurological condition.”
What are we doing to keep PD at bay?
I hike since it keeps me who I am, and I go at my own pace to enjoy life while I do.
Oddly, I feel more nimble and comfortable when I hike on rocks than I do on a paved rails to trails. Of course, I use trekking poles for stability. Boots help since my dystonia claw toes need to be straightened. However, I still hike because I can. Maybe someday, I’ll have to give it up, but I’m not going out without a fight.
That’s why I make videos like this one below.
Life is for living
Would you tell American Ninja Warrior Jimmy Choi that he’s bragging? Would you tell Michael J. Fox that he’s too positive? Some people, it seems, would. Instead of saying, “You need to be ready for X,Y, and Z, by doing A, B, and C,” they dwell on how bad it will be later in the game.
What’s up with that?
There’s a quote that is often incorrectly attributed to Abe Lincoln, which says, “Most people are about as happy as they make up their minds to be.” I agree with that. That’s why I focus on being okay with me.
Remember, reacting to PD with depression isn’t wrong. It’s natural. We just need to learn to work through it.
We’re all on the same team
Everyone of every ability needs to know that he or she can and should share success, no matter how big, small, or fleeting. We need to applaud other people’s successes. We need people to like and love our achievements. What’s more; we need to be ourselves as long as we can and to encourage the same from others.
Don’t become the negativity. Rise up and be the best version of you that you can be and take others with you!