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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: exercise

Goldie Goes Dancing

Terri Reinhart

I took Emma to the thrift shop so she could look for some nice tops to wear to school. That's all we were going to do. However, Goldie decided to come along and look at clothes, too, and that's always a challenge. I see practical cotton tops to wear with jeans. Goldie sees sparkly shirts with sequins. Once I found a lovely pair of flats made out of dark gray wool. Goldie found a pair of metallic gold oxfords. We compromised and bought both pairs.

The gold shoes are for dancing.

My doctor keeps getting after me to exercise more. I don't blame her, because we all know how exercise can be more beneficial to us folks with Parkinson's than just about anything else. It's been a journey to find just the right kind of exercise I can (and will) do which has a group meeting at a time I can attend. 

I loved the Yoga for Parkinson's and Dance for Parkinson's classes and went to those for a long time. Then my days filled up with being a caregiver and grandma, and the classes had to go. It was good timing as I was ready for a new challenge. That's when I started with the Rocky Mountain Rainbeaus and fell in love with Square Dancing... and fell in love with the Rainbeaus.

One of the first party dances I attended had the theme, "Gaudy is Gorgeous". I found a sweater at a thrift shop which had been spray painted gold. It was perfect... perfectly gaudy. I wore it with my red and white striped pajama pants. One of my fellow dancers, Fritz, christened me, "Goldie Lamé", and Goldie has been a part of me ever since. My alter-ego is quite friendly and mostly harmless - unless I go shopping.

Last weekend, I went dancing. The event was hosted by The Wilde Bunch, our sister club in Albuquerque, New Mexico, and was my very first experience at one of these weekends. The gold shoes came along, too, and was admired by everyone. We danced. And danced. And danced... Friday night, all day Saturday, and Sunday morning were filled with music, dancing, and lots of laughter. We danced to the calls of Bill Eyler, Kris Jensen, Scott Amspoker, and Anne Uebelaker. We did traditional squares, hexagons, and a wonderful, but very challenging kaleidoscope dance. With Scott, we even did some line dancing. Zorba is my new earworm.

My neurologist will be very happy. 

Chris made me promise to pace myself. He didn't want me flat on my back all this week. I think I did fairly well, considering just how much dancing there was. I was in bed by 9 pm every night, not staying till the dancing ended at 10 and not going to play games till midnight. Still, by the end of the party on Sunday evening, my dystonia had started to kick in and it was a struggle to walk to the car. My friends helped me to the car and made sure I got up the stairs and into my room. Then they checked on me in the morning.

(Oh, if any of the other dancers saw me - I wasn't drunk. Really. I even have my certified, "I am not drunk" card in my wallet. No, it's not for sale. My gold shoes aren't either.)

This trip was a gift in so many ways. First of all, it literally was a gift. One person had to change her plans at the last moment and she donated her registration fee so someone else could come. I found out 3 days before we left for Albuquerque that I was going. (Jackie, Kelly, and all, you didn't know it, but that was 2 days after my birthday. What an amazing birthday gift!)

Lately I have experienced and witnessed so many acts of generosity:  A man in our Parkinson's and Dystonia Facebook group hand carves and gives away canes and walking sticks to any member of the group. Wonderbound Dance Company has open rehearsals in their warehouse building studio and invites anyone, including those who are homeless (they are very close to the homeless shelters) to come in, sit on their couches, and watch the rehearsals. An old friend and classmate of mine, Milton, donated one of his handcrafted mandolins to a Colorado band whose instruments were destroyed in a fire. 

At the end of the weekend, the Wilde Bunch donated $100 to the Ralph Lorier fund in our club to help those people who couldn't otherwise afford to dance. Ralph, a much loved member of the Rainbeaus, died from cancer earlier this year. I didn't know him well, but I remember sitting and talking with him one of the last times he came to dance. From what I do know, he lived a life of quiet and constant generosity. 

What an amazing way to start my new year! 

Me dancing and looking like I'm trying to figure out my right from my left. 

Me dancing and looking like I'm trying to figure out my right from my left. 

 

 

 

 

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.

Of Goals and Resolutions

Terri Reinhart

I opened one eye, not that I had a choice. My eyelid was being pulled open by Mo, my Life Coach and Opinion Fairy, who had taken the job of motivating me to exercise and meditate my way to better health in 2012. As irritating as it was to have a small someone attempting to wake me up in this way, something that hadn't happened since my children were young, I had to admire her. Motivating me was not going to be an easy job. Over the Christmas holidays, I had gotten used to sleeping in and being just a little bit lazy. It wasn't the safest job, either, considering I had almost swatted her away a moment ago.

Mo: “Actually, you missed me by several inches, and just a little bit lazy? You haven't gotten up before 7 since the holidays started.”

Me: “Which is why, dear Mo, they are the holidays. It's the proper time to relax.”

I opened my eyes at this point and saw that Mo was dressed in sweats and wearing a tiny whistle around her neck. It didn't look right so I blinked a couple of times to make sure I was really awake. When I looked at her again, she was still in the same outfit.

Me: “What's going on with the sweats? Are you my life coach or my personal fitness trainer?”

Mo: “Both, dearie. Today we're going to talk about New Year's Resolutions.”

Me: “We already did, remember?”

Mo: “Yeah, I know. They're nice resolutions but a little too touchy-feely. Now you need to balance those out with some practical goals. That's it. We'll call them your goals for the New Year instead of more resolutions. Your first goal is to get up earlier.”

Me, yawning: “So you're deciding for me? What time is it, anyway?”

Mo: “5:30.”

Me: “Five-thirty? Are you nuts? I have it on good authority that not even God gets up at 5:30 am.”

Mo: “Your authority being a 5 year old kindergartener.”

Me: “A very wise 5 year old.”

Mo: “Okay, we'll negotiate that later. What goals have you set for this year?”

Me: “Can't this wait till I'm more awake?”

At this, Mo flew over to my left ear and blew her whistle loudly. She has good reflexes. I didn't mean for my arms to fly up and bat at her; they did it on their own. It's called “involuntary muscle movements”, a part of Parkinson's disease with which, as my husband will testify, I have a lot of experience. I was awake. I turned to look at my husband, who was still sleeping soundly. He didn't seem the least bit disturbed by our conversation.

Mo: “That's because he can't hear us, of course. Don't ask me to explain. It's a fairy thing.”

Me: “Okay, okay. I'm awake now. Goals. We're talking about something with goals.”

Mo stamped her foot. She was getting impatient. “Your goals! My goal is to get you to make YOUR goals and stick to them. Do I have to blow my whistle again?”

Me: “I'm getting up.”

Mo: “That's better. Now, into the living room for some yoga.”

I slowly made my way into the living room, after a brief stop in the bathroom. I'm not stupid enough to attempt yoga with a full bladder. I sat on the edge of the chair and closed my eyes. I started by paying attention to my breathing and sitting with my spine straight. After a moment or so, I heard soft music in the background. It was peaceful and I relaxed. I went into some leg stretches and torso twists. Getting down on the floor, I rocked back and forth with dolphin pose and then did a few cat and cow poses. Standing again, I did a few arm raises and forward bends, then proceeded to a warrior pose. I ended with a few more leg stretches from the chair again and then sat in my chair for a few minutes in quiet. It wasn't exactly Savasana, but it would do.

I opened my eyes. There was Mo, playing a tiny flute.

Mo, quietly: “Now, isn't that a nice way to start the day?”

Me: “Yeah! Thanks for the music. It was really lovely.”

Mo: “Now, we have a few more minutes till I'm off duty. How about those goals? Have you thought about them at all?”

I had thought about them. My daughter has challenged me to go off of refined sugar for the next month. We're doing this one together, starting tomorrow. I made sure to have an extra chocolate truffle tonight to tide me over. Our cleaning and clearing out job is nearly finished. I'm proud of that! When it's done, there will be no more clutter and no piles of papers or anything else, anywhere. My husband has helped with that one. All the old papers went into the fire pit and he spent a nice crisp day burning our old documents. I think we burned out the motor in our shredder.

Mo: “Sounds good. Anything more?”

Me: “Now I need to figure out how to balance my time. How to get in those daily naps, enough exercise, my volunteer work, my craft work, and still have time to spend with my friends.” 

Mo: “It's a good thing we've got all year to work on it. I'll earn my pay, which, by the way, could be some of those sweets that you're giving up. I'll expect a truffle or two tonight.”

She flew up in the air suddenly and said something very unfairy-like. It seems my arms had taken off on their own again. It was just another involuntary muscle movement. I swear it was.

Mo will get two truffles tonight.  She's earned them.

 

Another Walk in the Park or Parkour for Parkies

Terri Reinhart

Sometimes the timing is just right.  I am starting another exercise study for people with Parkinson’s disease.  This time, the goal is to learn about treadmill walking and the effect it has on keeping us Parkies folks in shape.  My goal is to learn to walk better.  As I said, the timing is just right.  Just after this study ends, I will be walking in our first ever school walk-a-thon, to help raise money for professional development.  I signed up to walk three whole laps.  Each lap is three quarters of a mile and that adds up to… let me see, that adds up to…

Okay, math has never been my strong area, but I know it must be at least twenty miles.  Dr. Barbara, PT, PhD, Dean and Professor of the School of Physical Therapy at Regis University, said they’d get me in shape.  With all those credentials after her name, I’m willing to believe anything she says. 

The first step was an evaluation of my current walking skills and balance skills.  Of course, they also have to throw in that annoying cognitive element; something called a “mini-mental” exam.  Fortunately, they warned me about it this time.   Who expects intellectual questions from a physical therapy evaluation?  I mean, really.  Where in my life has it been important to know how to count down from one hundred by subtracting sevens? 

Participating in studies is an interesting experience.  It’s much different from any other medical appointments.  First of all, they are happy to see me.  Secondly, they are on time.  I’ve never had to wait for my appointment when I am in a study.  Usually, there is a kind student waiting to escort me directly to the exam room/physical therapy room/lab.  There are often numerous students involved and they treat me as though I am one of their teachers, hanging on my every word and offering me a chair and refreshments if I look the least bit tired.  They know that I am a volunteer and I’m not getting paid to help them out.  I know that I’m getting therapy and not having to pay for it.  It works for everyone.

I did well on the balance part.  Dr. Barbara blames my yoga class for that.  The walking part was interesting.  There was an area taped off on the floor which was to be my walking path.  I was given instructions to walk forward, backward, fast, slow, normal pace, and with my eyes closed.  Each time I walked down the hall, I was timed so they could see just how slow I am.  If all these challenges weren’t enough, before one pass, they put a large cardboard box in my path.  They wanted to watch me get over the obstacle.

Now, lately I’ve become addicted to watching parkour.  Specifically, I’ve been watching “Jump City Seattle”, a program where four teams are competing with a combination of parkour, freerunning, and acrobatics.  Parkour, in its purest form, is the art of moving quickly and efficiently, using the most direct route over and around obstacles, and it’s NOT competitive.  Freerunning includes all those showy moves like doing a triple flip in the air when you jump off of a twenty foot high building onto the concrete below.  I like to watch this for several reasons.  The first reason is because one of our former students, Dylan Baker, is on the show.  The second reason is because I can’t move that well.  It’s amazing to see what the human being is capable of doing.  Thirdly, if I can’t get to sleep at night, watching a Jump City episode is sure to tire me out. 

Of course, if that was MY kid up there, jumping off of buildings and running across narrow steel girders three stories above the street with no safety net, there is no way I could watch. 

Back to the therapy evaluation, I eyed the pathway carefully, sizing up the obstacle.  I briefly considered the possibility of doing a superman flip over the box, ending with a dive roll.  I realized, however, that the goal was efficiency and safety, not showy moves, and I settled for a rather clumsy step over the box instead.  This is called “Parkour for Parkies”.

On Wednesday, I will begin my training on the treadmill.  We’ll see how it goes!  By May 7th, I should be ready to do my laps for the walk-a-thon.  I have a few donations already.  If anyone feels moved to support my effort, please visit our walk-a-thon page at the Reinhart Family Pledge page.  We hope to meet our goal for fundraising for our teachers.  We’ve also had one friend who is pledging a donation for another cause.  That’s cool, too.  Wherever the donations go, they will encourage me to walk that extra lap.  If I slow down to a crawl and think about quitting, bribes for the benefit of the school should help.  I’m open to other bribes, too, like chocolate.

I’ve decided to go with the true spirit of parkour as well.  I’m going for efficiency, not flash.  I promise I won’t do any flips and I’m not planning on competing against anyone.

I can do this.  I will have had six weeks of training and Dr. Barbara says I’ll be in shape.  I might not even need bribes, either; unless it’s chocolate.  I might even walk a fourth lap for chocolate.

 

Donations may go to:

The Denver Waldorf School

The Boudha Shack Village

Videos about Parkour and Freerunning

Tempest TV

Team Rogue


In Training

Terri Reinhart

I’m not eating ice cream tonight.  I’m being good and trying to stay away from sugary and otherwise unhealthy foods.  I’m also exercising.  I did my stretching and rode my exercise bicycle.  I’m pacing myself, too, so I don’t get too tired.  That’s the most important part.  I must not overdo it before Sunday.  Sunday is the day of the big race, you know!  It’s the New York City Marathon and, for the first time, I’m actually going to be a part of it!

I wasn’t planning on running a marathon.  On the whole, marathons have not been on my list of top priorities.  The New York City Marathon is different, though.  This is a big and very prestigious race with somewhere around 42,000 runners; and those are the ones who were chosen to participate out of over 100,000 applicants.  When I received the invitation to be a part of this, I couldn’t refuse.  Who could?

Okay, so I’m not going to New York and I’m not actually running, but I will be there in spirit.  My cousin, Daniel is running in the race with Team Fox, raising money for Parkinson’s research. When I found this out just the other day, I was touched beyond words.  I suggested that I’d like to be there running with him in spirit, but that I’d probably just get in his way.  He wrote back to say that he’s counting on me to be there in spirit, helping him to pace himself.  I’m his race pacer! 

This means I’m officially in training, too.  Daniel reminded to rest and told me not to abstain from too many treats.  I took that seriously and had a nap this afternoon, in between Yoga exercises and cooking dinner.  I’ll still limit my sweet treats, a little.  I’ll have to decide whether to have just the chocolate ice cream or just the Bailey’s. 

I can’t wait to follow the race via the internet on Sunday!  Here’s all the information you need to follow along with me and Daniel.

Daniel’s Team Fox page:  Team Fox Member - Team Fox.  If you scroll down, you’ll see his race pacer.  You can also support Daniel’s efforts (and mine) by donating to Team Fox.

Daniel’s blog:  “The Long Rush – Exercises in Style” at http://longrush.blogspot.com/.   

The New York City Marathon page:  http://www.nycmarathon.org/