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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 Category: driving

Canes, Trains, and No Automobiles

Terri Reinhart

I've known it for a long time.  Someday, someone would be telling me to give up my car keys.  I just didn't expect it this soon.  I also didn't expect the news to come from our mechanic.  As bad as this sounds, I'm really lucky.  I wasn't asked to give up my license, just this particular car.  The first mechanic's verdict was, "How attached are you to this vehicle?"  The second mechanic described our car with a string of obscenities.  

Fortunately, we still have Chris' truck and selling the old car for junk helped offset the cost of getting the truck in good repair.  We are now a one pick-up truck family.  I'm opting for a bus pass.

I've been riding the bus all year to go to my classes at the University downtown, and I've really enjoyed it.  The drivers with RTD bus service in Denver have been incredibly friendly and helpful, even when I ride my mobility scooter onto the bus and take up 4 places while paying only half the fare.  I was surprised at first.  Are the drivers always this nice?  So far!

What's great about riding the bus, besides not having to look for a parking space on campus, is how incredibly independent I feel as I get off at 16th street mall, downtown.  Especially if I have my scooter, I feel I can go anywhere and do anything.  On campus, it's nice to be able to go faster than the students who are walking.  I haven't run anyone down yet, but I have had a couple of students get out of my way, quickly.  I know they were just being polite.

Lately, I've been using my walker instead, as my scooter needs new batteries.  Those will have to wait awhile.  Until then, I have to admit, the walker is a huge help.  It wasn't easy convincing myself to use it and sometimes I manage to fool myself into thinking I don't need it.  I tried using a cane when I first had trouble walking.  Canes are cooler than walkers.  I have several.   The purple flowered cane works the best, but the ones I really like are the carved ebony canes, one from Sudan and one from Juba. Unfortunately, a cane will often trip me up.  

It's those pliés.  My legs still seem to think it's a good idea to practice dancing at odd times.  Nothing I say will convince them to at least inform me when they decide to do this, so the walker is a good idea.  My only challenge with the walker is in the classroom building.  With nice smooooth tile floors and long hallways, it's oh, so tempting to run a little and jump on for a ride.  

This is not tempting on the sidewalk, especially in the older neighborhoods.  Those sidewalks are not designed with older people in mind, especially those older people whose bladders don't like to be jarred suddenly.  

Back on the bus, I am treated as a very important passenger.  I get to ride the lift up the steps and I can sit up front.  If I have the scooter and another scooter or wheelchair rider is there, we spend the whole ride comparing our vehicles as though they were a couple of sport's cars.  We've immediately become comrades.  My regular bus drivers know me by now and they know where I get off.  

I haven't ridden the light rail in Denver yet, but I took my scooter to Chicago last fall.  Frontier Airlines staff were exceptionally nice and I was able to ride all the way to the gate.  Once in Chicago, we took the buses and trains.  I love the trains in Chicago.  They are rather old, though.  Riding with the scooter meant letting the station attendant know I'd need a ramp.  He or she would go get it, a heavy metal platform, and, when the train arrived, would place it down so I could board safely.  Then the attendant would phone ahead to where I was to get off and alert the attendant there to be ready with the ramp.  

At this point, I still have my driver's license and I can still drive.  When the time comes for me to give up driving completely, I want to smile and say, "Sure!", because I know I won't be giving up my independence.  

In fact, as soon as I have new scooter batteries, I won't miss the car at all.

Denver from the Auraria Campus

Denver from the Auraria Campus

Cars, Freedom, and Bear Hugs

Terri Reinhart

Do you remember the freedom you felt when you first got your driver’s license? Now you could go wherever you wanted, when you wanted, and didn’t have to wait for someone to drive you there. Now you could go somewhere all by yourself and be away from the world for awhile. Now you could be independent. Do you remember this?

Me, neither.

We had lots of rules. I was to stay off the highways, not go too far or stay out too late. And I was not to go to any “bad” areas of town. All these rules were pretty easy to follow, especially as we only had one car that was shared between four of us. Mostly I walked. Being free and independent was still a dream.

When I bought my first car, I really savored my independence. I can’t say that, with car payments, insurance, repairs, and gas, I felt free, but I did feel independent. Now, as a stay at home parent, my car is my lifeline. After dropping my daughter off at school, the day is mine. I can shop, visit friends, and go where I want to go. Not that I spend my days shopping and visiting, mind you, it’s just that I know I can.

Considering this, you will understand how scary it was for me the other day when my dystonia kicked in while I was driving. Fortunately, I was on a side road and was able to pull over quickly and park the car. Dystonia causes my body to twist and cramp until my muscles become so tight I want to scream. Usually if I wait it out, after about five or ten minutes it will begin to relax on its own. If I have someone with me and can convince them to help, it’s even better. With Parkinson’s, as with many health issues, there are treatments that tend to be as bad as or worse than the symptoms themselves, but with my dystonia, I’ve found a perfect remedy that is not the least bit unpleasant. If someone is with me and will give me a big, tight bear hug, and just hold me firmly in a hug for a few minutes, the dystonia will not only release, it is also much less likely to come back that day. This is scientific. The calming effects of deep pressure stimulation on the nervous system are well documented.

Dr. Temple Grandin, a University professor from Colorado State University, developed a “Squeeze Machine” ( to help autistic and hyperactive children to calm their overactive nervous systems. A big, tight, bear hug is a rather primitive squeeze machine, but a simple and available way to get this deep pressure when it is needed.

This time, my dystonia lasted much longer than usual. My arms curled up against my chest, my shoulder blades were convinced they could touch each other if they just tried hard enough, my hands threatened to unscrew themselves from my wrists, my head pulled to one side, and my legs and feet twisted up, too. Not only could I not drive, I could not open the door or even use my cell phone to call for help. For the first ten minutes or so, I was worried that someone might pass by and see me. Granted, if another person helps me out, the dystonia will go away much quicker, but I really didn’t want to ask a stranger to give me a bear hug. If a stranger agreed readily to this, I’d be a bit worried. And I’m not convinced that a police officer would understand, even if I explained all about Dr. Temple Grandin and her work. So, I sat and waited. After 20 minutes, I began to panic. It had never lasted this long before! How long was I going to sit there! Okay, okay, stress makes things worse. Calm down. This won’t last forever.

After 40 minutes, the dystonia finally released, my muscles gradually relaxed, and I was able to drive home. I took my meds and a nap. Then, knowing I would not really get anything productive done at home, I went back out and visited a friend. I did not tell my friend what had happened but I was still very shaky after my experience earlier in the day. I gave my friend a hug and he turned and gave me a funny look. “Come here,” he said, and he put his arm around me, squeezing me tight and just holding me there until I stopped shaking. How did he know what to do? I’m not totally sure, but I know he’s very perceptive and I’m very grateful.

I’ve made some changes in my driving. I've given myself lots of rules.  I will not drive on freeways or anywhere that I can’t pull over easily. I will not drive when my meds have worn off and I will not drive when I’m tired. I’m also doing my homework. Some people with dystonia say that listening to music in the car will help prevent these episodes. My sons have promised to keep me supplied with plenty of music. This should be interesting. Knowing my sons, it could be anything from Classical* to World Music** to Contemporary Music*** to the one and only Christian Football Waltz****.

Maybe bear hugs can be used as a preventative. I think I’ll ask my doctor for a prescription.


*Beatles, Herman’s Hermits

** Schlag mich Baby noch einmal (Hit me baby one more time – The Wise Guys singing the Britney Spear's song -

***Tiger Lillies

****Drop Kick Me Jesus Through the Goalposts of Life – written by Bobby Bare and Shel Silverstein