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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: independence

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

Off Road Traveling and that Someday which is Today

Terri Reinhart

As you have probably seen already from the photo that's been posted several times, I am "off-roading" these days. The photo is not totally honest. I rarely travel in the streets if I can help it. I travel almost exclusively off road, on the sidewalk. We finally bought my mobility scooter and we've been putting this little baby to the test. Last Saturday, we got on the train in Denver and came to Glenwood Springs. We had planned to do this as our 30th wedding anniversary celebration and also as a way to begin Chris' retirement.We had talked for a long time about taking a trip together someday, and now we finally are doing it.

There are all kinds of things that I plan on doing someday. Someday, I plan on finishing my book. Someday, I plan on writing down the Grandmother Willow stories. Someday, I will have the studio finished. I could go on and on, but you get the idea. When will someday turn into now?

This is part of why I am so happy that we have come to Glenwood. Of course, the biggest and best reason for taking this trip is that Chris and I can spend 6 days together, just the two of us.  We have had a marvellous time wandering around the town, shopping, swimming, and today, we even rode the Tramway up the mountain! Chris was rightly proud of this accomplishment as he has a serious fear of heights.I have been most excited about wandering around the town and shopping. I can do that now because I am not concentrating only on keeping myself upright and moving, as I need to do if I am walking.

My new scooter is part of how we made our someday become today. Parkinson's is a strange disorder. My neurologist refers to it as a designer disease because it affects different people in so many different ways and our reactions to medications are also very different. There are some days when I don't appear to have any physical challenges whatsoever and other days when I have difficulty getting around in my house.

I met one man whose Parkinson's wasn't at all visible to other people. When a friend of his, whom he hadn't seen for several years, came to town, she didn't believe that he had anything wrong with him and she actually became angry with him for worrying her with his story of having Parkinson's.For those friends of mine who see me only when I am doing well, they might wonder why I would even think of getting a mobility scooter. Isn't it important to exercise when you have Parkinson's? And why would I want to make myself look and be more disabled than I am?

My answer to these questions is simple. I am not trying to be more disabled, I am trying to be more mobile. Over the last 7 years, I have given up a lot of activities that I loved, just because I knew I could not do the walking involved. I didn't go to festivals and fairs anymore. I wasn't able to take long walks or opt to walk with my children to the library instead of taking the car. I didn't go to museums or shopping malls. Some places have simple non-electric wheelchairs that can be used to get around but that really makes me feel disabled! I don't have the strength to push myself through a museum so I would be dependent on someone to push me. Walking will never be the way I get my exercise because, after a half a block or so, my dystonia will kick in. My physical therapist agreed with that. With my scooter, I am able to do things that I haven't done for 7 years. I am more able, not more disabled with my scooter. Why wait till my disease has progressed to the point where I can't get around any other way? I feel good now and I want to do as much as I possibly can do, now!

Why wait for the someday that may never come? Having successfully accomplished so much on this trip, I now have renewed energy to bring home with us. I am determined to make many more somedays turn into todays.

First things first, however. We have just spent two and a half days wandering around the town and being very busy.

I think I need a nap.