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My Parkinson's Journey

In which Terri shares a humorous look at her journey with Parkinson's disease and Dystonia:

For me, illness and health are not opposites but exist together. Everyone has something that is challenging to them. Mine just simply has a recognizable name. My life will take a different path because of this but that's okay. Everyone has changes in their lives that create their path.  I'm learning how to enjoy whatever path I'm on.

Living Well - Exercising the Heart

Terri Reinhart

The opposite of love is not hate, it's indifference.

The opposite of art is not ugliness, it's indifference.

The opposite of faith is not heresy, it's indifference.

The opposite of life is not death, it's indifference.” 

Elie Wiesel

In other words, I'm not talking about aerobics.

Physical exercising will help keep my physical body strong, yet there may come a day when my body isn't strong anymore. Making lifelong learning a priority will help keep my mind sharp, yet there may come a day when my mind slows and I don't remember things so easily. Life doesn't come with guarantees.

Even if there aren't any guarantees, I'm still going to place my bets on living a long life and staying upright. If there's any possibility I can keep myself going longer by doing something about it, I'll do something about it, but I won't go overboard. Once in awhile I'll even have a McDonald's cheeseburger. I'll fudge a little here and there. I won't fudge when it comes to taking care of my heart – and doing whatever I can to help care for the heart in every person I come in contact with.

Six years after being diagnosed with Parkinson's, I went back to the very first article I wrote for this journal. Do I still feel the same way?

Here's part of what I wrote.

* * *

If I ever need others to take care of me, I want people around me who will allow me to live a normal life.

This means:

· Friends and family who will get me out of the house and into the world, even if I am grumpy about it.

· Friends who will pour me a glass of wine and help me drink it, even if I’m not supposed to have it.

· Friends who will tell me bullshit stories and make me laugh.

· Friends who will make me cry.

· Friends and family who won’t mind if I tell the same stories more than once.

· Gossip. If there is a juicy story, I will want to hear it.

· Adult stories. I don’t ever want to be talked to as a child. Politics, religion - don’t stick with “safe” subjects!! I want to always have an opinion. You can even swear, if you need to.

· Friends who will get mad at me from time to time. And who will take it if I get mad at them.

· Friends who will tell me if I’m out of line.

· I want my friends and family to tell me what is going on in their lives, even if it’s painful. Don’t keep things from me so I don’t worry. You are my family and my friends and I have every right to worry about you.

· Friends and family who will hold my hand or put an arm around my shoulder.

· At least one friend who is not afraid to kiss me on the lips, even if I drool.

· Someone who will sing with me, no matter how I sound.

Being normal, being a real living human being means experiencing life. And life is both beautiful and painful. Experiencing life means experiencing disappointments and triumphs, joy and intense sadness. Sometimes it means getting really pissed off, too. And it can be delightful to get really pissed off from time to time. It’s energizing and it keeps the brain working.

I don’t want to be wrapped in cotton wool. Being safe doesn’t mean padding all the corners and keeping me from falling down. Being alive means getting hurt from time to time. I don’t ever want to be too protected. I want to be able to struggle – physically and emotionally. I want to wrestle with the real questions of life and love and friendship and what does it all mean, anyway?!

I want to keep bumping into life and crashing into love. Life does make its marks on each of us, but don’t worry. The marks you see on me?

They’re just love bruises.

* * *

Do I still feel the same way? Yes, but I rarely think about it. When I do, I know that what I want more than anything is to be able to do all this for my family and friends.

Six years can make a difference.