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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: coping

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.

 

Life Coach

Terri Reinhart

She was back. Sitting on my computer in a lotus position, arms gently outstretched, palms turned upward on her knees, the Opinion Fairy looked to be meditating. Her eyes were closed. I don't think she knew I was there until I started typing. She opened up one eye briefly, pretending not to notice me. For the next few minutes I left her alone and went on with my work. After that, I'm afraid I succumbed to temptation.

Me: “Hey, Opinion Fairy, you want to get your shoulders down a little. Don't shrug them. And don't over arch your back, either.” I put my fingertips on her shoulders and gave a little push downward. She glared at me.

O. F.: “I'm here to teach you how to meditate, not get pointers on my yoga positions,” she said grumpily. “I read your last article. It sounded like you could use some help.”

Me: “Yeah, well, I'm doing okay now. I even had an appointment with a therapist. One session and I'm cured.”

O.F.: “From what I heard, your therapist was pregnant and went into labor early and had to cancel all her appointments.”

Me: “Uh huh, and I feel oh, so much better because I didn't have to see her.”

O.F.: “So, what's the plan from here? Did you reschedule?”

Me: “No, I didn't reschedule. You know Kaiser. The next available appointment would probably be sometime in 2020. I've got plans, though. I'm planning on doing at least some yoga everyday, taking long walks with my husband, slowing down a little, and finding every way I can to keep my balance, physically and emotionally, without any more medication.”

O.F.: “Wow. That's impressive. Do you think you can do it? After all, your typical way of keeping your balance seems to be to swing from one extreme to another.”

Me: “Yeah, well, part of that was the medications. That's exactly why I want to go a more wholistic route this time.”

O.F.: “I'll tell you what. You could use a coach and I could use a job. I could keep you on task and teach you how to relax, live in the present, that sort of thing.”

Me: “Hmm, I'll think about that. How would I pay you? And what happened to your other gig?”

O.F.: “Some people don't appreciate other opinions, that's all. As for my pay, for an old kindergarten teacher, you don't remember your fairy stories very well, do you. Leave some food out for me. I'm partial to sweets. Don't give me clothes, though, or I'm out of a job.”

Me: “Sweets. I think I can handle that. You're hired. Oh, and, if we're to be working together, I need to know your name. I don't want to have to call you Opinion Fairy or O.F. all the time.”

O.F.: “You can call me Mo.”

Me: “Mo? That's a funny name for a fairy. Is it short for something?”

The fairy mumbled something that I couldn't hear. I looked at her and raised my eyebrows. I haven't mastered the art of raising just one eyebrow yet, but I'm working on it.

O.F. (or Mo as I must now call her): “It's short for Marshmallow, okay? A 4-year-old named me. A little girl who was eating marshmallows with sticky fingers saw me wake up. She picked me up before I knew what was happening. She named me Marshmallow and it stuck.”

Me: “The name or the marshmallow?”

Mo: “Very funny. Uh.. both actually. It took weeks to get it all off. I am glad you're going to hire me because I've found some sweets you've been stashing away and decided to take my first paycheck in advance.”

She reached into a small bag and pulled out a candy.

Me: “Uh, Mo, I think you'd better be a little careful about those candies. They're not just ordinary sweets, you know. That's my medical marijuana candy. They aren't very strong, but then, you're not very big. Take it in tiny, tiny amounts and then wait. Otherwise you can get too much without knowing it.”

Mo: “What do you mean? They taste okay.”

Me: “How much have you had? You know, I hadn't noticed it before, but your wings are starting to droop.”

Mo: “Really?”

She stood up and quickly turned her head over her shoulder to look at her wings. Immediately she turned a particular shade of moss green and put her hands up to hold her head still.

Mo: “Ooh, I feel a little dizzy. I think I'd better lie down before I fly home.”

Me: "You'll stay here tonight, Mo.  Friends don't let friends fly when they're stoned."

I got out a shoebox and folded up one of my soft wool sweaters into a sleeping bag. Carefully, I lifted the little fairy into the box and covered her up snugly. I carried the box into the living room and put it next to our houseplants. I wanted Mo to feel at home. I went back to the kitchen and found a few dried cranberries, a date, and some sunflower seeds. I put them in a dish beside the box. I whispered “goodnight” to her but she was already asleep.

Mo will be fine. She'll sleep well tonight and wake up in the morning feeling refreshed and hungry. I'm looking forward to her help. Who knows? She might even learn a few things from 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!!

A Bucket List

Terri Reinhart

A number of years ago, a colleague of mine challenged me to create a list of 100 things that I wanted to accomplish in my lifetime. It sounded like one of those good and noble things to do, so of course I did it. Naturally, I will do anything that is good and noble.

 

There’s been a movie made about this and so now it’s called a “Bucket List”, meaning that you write down all those things you want to do before you kick the bucket, hand in your dinner pail, shuffle off this mortal coil, take the last bow, and hop on the last rattler. It seems like everyone is making a list. Now it’s not only good and noble, it’s also fashionable.

 

Maybe it’s time to review mine. Unfortunately, the computer ate it. I think it was the crash of 2007, when I lost my parent/teacher conference notes, family photographs, journal, and found out what an external hard drive is for. Anyway, my list is gone. I do remember a few things. It had a lot in common with my daily to-do lists: finish cleaning my workroom, paint the kitchen, and build a patio in our garden. Not a thrilling read.

 

There was one item on the list that was interesting; however, that one will have to go. I will not pose nude for a life drawing class. It’s not that I have suddenly become overly modest or that I am worried about my not so perfect body.  That’s actually the point. Human beings come in all shapes and sizes and they are all beautiful, even if not all their bits are quite what our society sees as attractive. It’s my humble opinion that all students, beginning in high school, should be required to take a life drawing class and that the models should be a diverse group.But, as much as I sincerely believe in these classes, I have to admit, I cannot do this. I get cold easily now, and when I get cold, I sneeze. When I sneeze... well, let’s just say, it wouldn’t work.

 

Since my list has vanished somewhere into cyber world, I asked my family and friends for help. What would they put on their list? My daughter wants to ride a camel. One of my sons wants to write a really thick novel, one that he has fully illustrated. My good friend, Eric, would go white water rafting and sky diving. Andrea would take a three week holiday in Greece. Vicki would go to Israel to see the places where Jesus walked, Chris would buy his pickup truck, and Mike would drive to their mountain cabin and spend an entire day hiking with his family.

 

I’m not exactly sure what I’d put on my list. Maybe I’d add the tandem sky diving experience. I would also like to be able to play a musical instrument, very well. Of course, I’d mostly like to just snap my fingers and suddenly be able to play an instrument! Learning to play is a lot of work.

 

When I look back on everything that’s happened in my life so far, however, I’d have to say that the most precious moments to me were those that were not planned and would not be anything that I would ever have thought to put on a list such as this. I never planned out ahead of time that we would have a foster child. Who could have known that I would one day help rescue a baby woodpecker and hand feed it for five days until we found a rescue organization? I never planned on working for three years, for minimum wage, in a nursing home. I always planned on having animals, but the baby goats were a bonus. The biggest unplanned event in our lives would have to be our daughter. We hadn’t planned to have another child. She planned on having us, though, and she was and is still our most amazing unplanned bonus!

 

I once had a dream that my doctor called me at home. In the phone call, he told me that my health issues were much more serious than they had realized and that I only had three days to live. I remember, very clearly, going into a panic for just a moment, then suddenly saying to myself, “What am I doing? I don’t have time to panic. If I only have three days, I need to get busy. After all, I should clean the house and cook a few dinners to put in the freezer, finish the laundry, and call Rev. Hindes. I have to plan the funeral.” My mind was suddenly a whirl of recipes, menus, folding clothes, and choosing my favorite songs.

 

I did the whirlwind thing for awhile, in a scatterbrained sort of way and then I stopped. I took a deep breath and sat down. I slowly took out a few sheets of good quality paper and a nice pen. The heck with the housework and cooking; and when does one plan their own funeral anyway? I forgot about everything else I wanted to accomplish and sat down to write love letters to my husband, my children, and my friends.

 

Now, back to my bucket list. I will still start over again. Then I will have all sorts of ideas for whenever I feel the need to rebel a little and do something big. But I also plan to leave every other line blank. I want to leave some room for all those things that I would never think to put on my list. Hopefully, I will recognize them when they happen and then I can go back and fill in the blanks.

 

And, just in case I don’t have three days warning before I hop on the last rattler, I’ll start writing those letters.

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.