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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.

Filtering by Tag: living well

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.

Living Well - Getting the Body in Gear

Terri Reinhart

Q. What's the best kind of exercise?

A. The one you will actually do.

(from the Davis Phinney Victory Summit Symposium)

Last week, I had my regular appointment with my neurologist. She asked me a lot of questions about how I was taking care of myself. What was I doing for physical exercise? What was I doing to exercise my brain? And was I getting out into the community and being with people?

In other words, what was I doing to exercise my body, mind, and soul. I'll tackle the first one today. One thing at a time.

I was happy to tell her I was continuing with yoga and dance. I know I could also use more aerobic exercising, but at least I'm doing something regularly. She emphasized the need to do stretching exercises to keep limber. I get it. Keeping limber won't prevent dystonia, it just makes it less painful when it happens.

Yoga or dance, aren't just exercises for my body, they also challenge my thinking. I have to remember things like right and left, forward and backward, grapevine... which foot do I start on? Oops, sorry. We're going the other way? Oookaay. Dancing is also a social art.

When I was first diagnosed, we bought a recumbent exercise bicycle. It's a wonderful idea. I can ride for 30 minutes while watching a movie or listening to an audio book. I can program the bicycle to whatever difficulty level I want, and the little screen alsways tells me I have done a

Great Job! 

After we bought it, I was religious about my bicycling. Every day I upped the time slightly and in those first months, I never missed a day. I still ride it at least three times a year.

When I qualified for Medicare, I also qualified for another program: SILVER SNEAKERS! This is a great program which allows free access to the recreation center. I can use the treadmill and other exercise machines, play basketball or raquetball, and use the pool. I prefer the lazy river walking followed by a nice soak in the hot pool. Again, when I first got in the program, I went several times each week. When I go back again, I'll probably have to ask directions to the pool.

Exercise studies are also a good motivation to get physically active. There have been any number of exercise studies for people with Parkinson's in our area. It's like having a free personal trainer for anywhere from six to twelve weeks. I was just called last night about another study. This was a backwards walking treadmill study. Talk about playing to my strengths! I walk backwards well, whether I want to or not. I signed up quickly

I signed up for this study, but after thinking about it, I called back and declined. I am doing enough now. The last time I over extended myself, I ended up exhausted for weeks. Being exhausted for weeks means I fall – a lot. Too much is too much.

The best advice I've received is from Paul Zeiger, my yoga teacher. He constantly reminds us how we can turn any and every daily living activity into exercise. Before getting up in the morning, I can do simple stretching exercises in bed. When I am sitting, I can sit up straight, doing a mountain pose from the waist up. Working in the kitchen? I can still watch my posture, practice shifting my weight from one foot to another, and even balance on one foot, a modified tree pose. Before getting up in the morning, I can do simple stretching exercises in bed.

Having our grandchildren visit provides unlimited opportunities to exercise.

My posture has improved dramatically from before I was diagnosed, or rather, from before I started in yoga class. My overall coordination has improved since starting dance class. Another yoga teacher, Carol Fisher, insists we can still move gracefully, no matter how old we are, even if we have Parkinson's disease.

That's motivation.