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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: dance for Parkinson's

Dance Walking with Ben Aaron

Terri Reinhart

I was just going to add this as a follow-up to my journal entry, Stepping Out, but figured it deserved a place of its own.  Maybe I can work my plies into a dance walking routine such as this! 

The best news is they've found the dance walk guru.  Look up Ben Aaron on Facebook to see that video. I also shared it on my Facebook page.  Thank you to Ben for giving me permission to post this on my website.

Stepping Out

Terri Reinhart

Plié [plee-AY] verb. Bent, bending. A bending of the knee or knees in dancing. 

I'm still enjoying dance. It agrees with my body. In fact, my body is enjoying dancing so much it has decided to practice steps whether I intend to or not. Lately it's the plié. That's when you bend your knees slightly. The movement is supposed to be done gracefully, but that's not always what happens. It would help if my knees would inform my brain when a practice session is about to begin. Instead, they plié without my permission and chaos ensues, at least for the moment.

When something like this happens, I'm never sure what to make of it. Is it just a temporary fad or have my legs decided on a permanent dance career? Whatever it is, I find myself doing a modified traveling waltz step as I go along: down, up, up, down, up, up; plié, step, step, plié, step, step. After a while, it's not too bad. I can get into it.

This, however, caused great consternation among the security personnel at Denver International Airport last week when my daughter, Emma, and I flew to Chicago. When we travel, I bring my walker along. I don't use it all the time, but traveling is stressful. Stress + Parkinson's = Total Klutz Time, or TKT. When I am in TKT mode, a walker is necessary so other travelers are warned to keep their distance.

The trouble, of course, is the security folks have to go over the walker to make sure I'm not sneaking in weapons of mass destruction in the front basket or the tubing. Their first question to me was, “Can you walk for a short distance without your walker?” Of course I can. I do it all the time, but to make them feel better, I walked as close as I could to the actual scanner before giving it up. Then I was on my own for the next 20 feet. No problem.

I walked through the scanner, lifted my arms in the required manner, and walked out, without a hitch. Emma had to go through twice. She has now learned to not wear jackets with sparkly metallic thread. It confuses everything. I gave her my best patient look. She rolled her eyes.

Once out of the scanner, I went to find the plastic bin with my shoes and other belongings. That's when someone behind me dropped their bin on the metal table.

Grand plié.

Not expecting my knees to bend, I grabbed onto the table. Then the security people took notice and asked me if I was okay. I assured them I was fine, then continued on my way, making another grand plié with every step. Security guards were asking me if I was okay, at the same time I was attempting to communicate to my legs that now was not the time to practice dance moves. Though I continued to assure the security guards I was fine and this was normal, I don't think they believed me. Before I knew what was happening, they had gathered up all my belongings and were escorting me to an area labeled, SECURITY – DO NOT ENTER.

After a moment of panic, I realized they were simply giving me an area where I could fumble around as long as I'd like without bumping into anyone else. They were actually quite nice after that. Maybe they felt guilty for taking away my walker, especially now it had been inspected and no weapons of mass destruction had been found. They even called for an electric cart to drive us down to our departure gate.

Once our flight was ready, we were allowed to board first, giving us first dibs on the overhead storage space. This is when I decided I make a good traveling partner. I briefly considered making this into a career; after all, I have always wanted to see the world. I could advertise: Bring me with you on your next trip and go to the head of the line!

Ah, but airplanes aren't as comfortable as they used to be. Instead of the nice wide seats and acres of leg room I remember from 20 years ago, airplanes are now more like air born Greyhound buses, packed like sardines. That first flight was a bumpy one. There were tornadoes somewhere below us wrecking havoc in Illinois. I turned green and wondered if I should dare move just enough to find the barf bag in case I needed it. Fortunately the trip home was nice and smooth.

Regardless of this, we had fun! I enjoy traveling enough to put up with crowded flights, narrow aisles, and little leg room. Though our trip was for medical appointments, and we were only there overnight, we were still able to see a little bit of the city from the elevated train which we took back to Midway Airport. It was incredible and lovely and it felt like we were flying; only we were much more comfortable. Chicago is beautiful when seen from the train. Hopefully we can see it from the ground some day.

I would go again in a heartbeat; which is good because we're going again next month. We have most of our plans made. Emma will have surgery at Shrine Hospital and we will most likely stay at Ronald McDonald House. Chris will come along with me and stay as long as Emma is in the hospital. Then he'll return home and the two of us girls will stay for another week or so.

I just have a little more preparation to do and I'll be completely ready. I want to learn a few different dance steps before we go, something my legs can practice without causing panic attacks in the people around me.

Sashay anyone?

Sashay [să-shā] verb, informal. 1. to walk or proceed in a casual manner 2. to strut or flounce 3. a journey taken for pleasure

Sounds good to me.


Making Friends with the Mirror

Terri Reinhart

My dad has a wonderful attitude about growing old. He tells his doctor that, with all his aches and pains, he doubts he has more than twenty good years left. He just turned 87 last week. When he feels his age more than any other time, is when he looks in the mirror. Then he wonders who that old man is looking out at him. It's a shock, realizing that he is looking at himself. He doesn't feel that old. 

During my first year of kindergarten teaching, I had a young boy in my class whose father could do anything, at least according to his young son. I had the task of reading a story to the nap time group every afternoon and, no matter what the story was about, as soon as I finished reading, this boy would say loudly, “My dad can do that.” As his dad just happened to be one of my colleagues, I had a delightful time imagining him, in his white shirt and tie, fighting tigers, climbing high mountains, and capturing alligators.

In my own way, I tell myself the same thing all the time. When I saw home made brooms for the first time, I was immediately intrigued and looked hard at how they were made. My first thought? I bet I could do that. The same thing with binding books or sewing a diaper stacker for my new grandson. How are they made? I bet I could do that. I've gotten myself in trouble from time to time because I commit to doing something that I've never done before, assuring myself that “I know I can do that” before I realize what I'm doing or how large of a job I've just taken on. 

This is why I am now finishing numerous craft projects, starting a business, preparing to be a health mentor to a group of medical students later this week, and writing a novel. Can I do that? I have no idea, but that's not the point. If I don't try, I'll never know. 

Watching someone dance is beautiful, amazing, and awe inspiring, and it makes me squirm in my seat. I don't want to just watch, thank you very much. To be truthful, I am more likely now to say, “I wish I could do that”, but that's just my thinking. My arms and legs decide on their own and begin to follow along. I can feel it in my bones. My body decides it can dance and is just waiting for me to catch up. In my imagination, I look and move just as beautifully as the dancers whom I am watching.

Dancing in my Dance for Parkinson's class is even better than in my imagination because I'm really moving! I might miss a step or two and I might accidentally start walking the wrong way, but that's okay because I'm a dancer. I'm determined. I can do that. The music starts and I'm off. Plie, port de bras, tendu, brush forward, brush back. Even the words are beautiful.

Then we turn and face the mirror. Ohmigod. I don't really look like a dancer, do I? Who is that dumpy middle aged woman with Parkinson's disease, who is trying awkwardly to keep up with the teachers? Again I realize how much we, especially all of us females, are taught to dislike our bodies. Really, I don't look at anyone else and feel the need to be critical of their bodies. In fact, as an artist, I find myself savoring every wrinkle and all the wonderful oddities that make each of us unique. As a friend, I see you, not just how you look. I know my friends do the same for me.

Okay, my next challenge is to make friends with the mirror. That is who I am and I really wouldn't want to be any different. I rather like who I am right now. Along with learning how to dance, I'm taking on this bigger challenge. I'm going to learn to enjoy watching myself, as I am, moving and dancing, awkward as I may be, in the mirror.

I can do that.

This video is from our Rhythm and Grace dance class.  Thank you to the Parkinson's Association of the Rockies for the video and for sponsoring this class!!

Rhythm and Grace

Terri Reinhart

A friend of mine once complained that his girlfriend had signed them up for a Jazzercise class so they would have something they could do together. My friend was less than thrilled. In fact, he ended up by saying that just about anything would have been better than a Jazzercise class. “If she had signed us up for ballroom dancing, that would have been okay. I would've done that, but not Jazzercise.”

I learned a good lesson from this. I had been going about things all wrong. Instead of suggesting, asking, or begging my husband to take a ballroom dance class with me, I should have simply signed us up for Jazzercise. Dancing would have been welcomed after that. I briefly considered telling him that I had done this, just to try it, but abandoned the idea quickly. He wouldn't have bought it. He knows my bladder wouldn't hold up to that kind of exercise.

Nevertheless, I have always been interested in dance, so when the Parkinson's Association of the Rockies decided to start a “Dance for Parkinson's” class in Denver, I was ready to sign up. Chris declined my offer to sign him up as well, out of the noble viewpoint that if he was to come, he would be taking up space that should go so someone else with Parkinson's. I accepted his noble excuse while noting the look of relief on his face.

Yesterday was the first class. I had looked forward to this ever since participating in the demonstration class last month. Because parking was limited in the area, I had the brilliant idea that I could drive to our school and take the bus back and forth to the class, arriving back at school in plenty of time to take our daughter home. In theory, this was a good idea. The bus dropped me off right at the door of the Colorado Ballet. After an hour and a half of vigorous exercise and another bus ride, I walked the two blocks back to where I had parked the car. I swear that each of those blocks must have been at least a mile long. It was my triathlon: walk, ride the bus, dance, walk, ride the bus, walk again. My timing was a bit off but, all in all, I didn't do too badly.

The class itself was incredibly fun! I can't even tell you what all we did, mostly because I can't remember what the steps were called. Our teachers, Private Freeman and Sharon Wehner, are professional dancers and we had a lovely woman providing live music for our efforts. And effort it was. I learned a lot of things yesterday.

First of all, I learned that I function quite well from the waist up. Okay, I knew that already. I know right from left and my arms generally do what I ask them to do. My legs, on the other hand, have no interest at all in cooperating with me. They refuse to obey the simplest commands, especially if it entails knowing which is the right foot and which is the left; or it might have been that they were competing and each wanted to go first. It's not just a physical workout. It also requires that we pay attention to the other members of the group and how we are moving. I am proud to say I did not bump into anyone.

Then the music started and we danced from our chairs, behind our chairs, and then across the room. It didn't matter that we weren't perfect. I was moving to the music and I felt like a dancer! I credit the teachers for this. They treat us as though we are peers and they make it clear that our movements, even if they are limited, are beautiful to them. They didn't have to say this, it was obvious in every way they interacted with us. This could be another benefit of the class.  Maybe, just maybe, I'll start to see my movements as beautiful, too.

It's not surprising that the class is called “Rhythm and Grace”.