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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: parkinson's

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.

 

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.

 

CAFFEINATED!

Terri Reinhart

(With apologies to the late Gene Amole, former columnist for the Rocky Mt. News, and his Idea Fairy.)

The jitters were still affecting me last night after having that cup of coffee at 9:00 am. I know, at 7:30 pm, it should have worn off long ago, but it hadn't, which was why I was still enthusiastic and excited, and why I was looking through business papers and paying bills, planning my next step for the business, and writing with long run-on sentences with lots of commas, regardless of whether they are needed, or not. The only problem was that it was hard to focus; which is why it took me awhile to notice the fairy that was sitting on top of my computer screen, looking down onto my work. I decided to be polite.

Me: Who the hell are you and where did you come from?

Fairy: I'm the Opinion Fairy. I've been watching you for awhile and thought I'd come and tell you what I think of your work.

Me: Isn't that supposed to be Idea Fairy?

Opinion Fairy: That's my cousin. She's nice. Now, are you going to tell me? What are you so excited about?

Me: I made it through the meeting with my vocational/rehab counselor and it went well, in fact, it went even better than I expected, especially as he started by telling me what I hadn't done that I was supposed to be doing, and which papers I hadn't turned in.

O.F.: You're doing it again.

Me: What?

O.F.: Speaking in long run-on sentences.

Me: But I'm excited! Just listen. I blew him away with my promo video and how clear I was with what I wanted to do with my business and how much I had sold already and my connections with wholesalers and authors, and how practical I am.

O.F.: You don't sound practical now. You sound manic. What's going on?

Me: I had a cup of coffee this morning. I said that already.

O.F.: This morning? Come on. I drink coffee every morning and it doesn't do that to me.

Me: But I don't drink coffee.

O.F.: You just said you did.

Me: I was invited over to have coffee with someone this morning and it was, like, coffee. Usually when I go out for coffee, I have tea.

O.F.: It'll take me awhile to work that one out. So, you had coffee this time.

Me: Yeah. She poured a cup of coffee and handed it to me. I thought, “I'm an adult. Adults drink coffee. I can do this.”

O.F.: You've never had coffee before this morning?

Me: Of course I've had coffee! Thirty-two years ago, we went on a road trip through the midwest, in August, and we left at night so we wouldn't have to drive through the heat. I drank a half cup of coffee with lots of milk and sugar in it, just so I could stay awake.

O.F.: Meaning, of course, that there must have been a whole tablespoon of actual Java in there?

Me: Yeah. Something like that. I have weird reactions to things. My family still gives me a hard time for getting tipsy from drinking an O'Doul's. Don't worry about me. I'm okay now. It's starting to wear off. I'm calm. I'm calm.

O.F.: Calm!? You're like a chipmonk that's just gotten off a roller coaster, a hummingbird on speed, a person with Parkinson' disease who's forgotten her medication.

Me: Okay, now that's getting personal. I'll have you know I've taken all my meds today.

O.F.: If this is calm, what were you like earlier?

Me: Well, when I got home from my visit, my husband had to take me for a walk.

O.F.: A walk is good.

Me: Yeah, except I was walking backwards...

O.F.: Backwards...?

Me: ...and sideways.

The Opinion Fairy raised one eyebrow. She wasn't going to comment on that one. I was impressed. I've always wanted to be able to raise just one eyebrow.

O.F.: I'm glad you made it through. Now, can we get on with your writing? It's just that, I've got another gig tonight and I shouldn't be late.

Me: Someone more important than me, I suppose.

O.F.: That's classified information; and don't feel sorry for yourself. Now, I see you've got several ideas for articles written down there.

Me: Leave it to me to get an Opinion Fairy. Okay, I've narrowed it down to three – “choosing the right kind of pillow”, “the benefits of an afternoon nap”, or “sleep-a-thon raises money for Parkinson's research”.

O.F.: Sounds like you need another cup of coffee. I'll tell you what. There's another idea here that's worth exploring. “The benefits of low dose medical marijuana for Parkinson's patients”. I'm sure a lot of people would be interested in that.

Me: That's a good idea. Of course, that means I'll be coming out of the closet and admitting that I use it. There's still a stigma to that, you know, even if you just use it now and then. People don't realize that you don't have to get high or stoned. If used as a medicine, it's a medicine.

O.F.: Yeah, and it controls your startle reflex, takes the edge off your dystonia, and can knock out a migraine. People just need to be educated about it, you know that. It even has fewer side effects of any other drug you take for your Parkinson's.

Me: Including coffee. You have been watching me, haven't you?! I suppose you'll want to get credit for the idea?

O.F.: No, no. You'd better leave me out of it.

Me: Why? You don't trust my writing?

O.F.: Well, it's just that, if you tell people that a fairy helped you to write an article about medical marijuana, they might not take you seriously. At least, that's my opinion.

I sighed and admitted that she was probably right.

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”.

 

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


Speak up!

Terri Reinhart

One of my favorite scenes in the movie, "The King's Speech", is during a speech therapy session where the King starts swearing as he practices for the speech he has to give.  This pretty well captures my feelings about public speaking.

Even without a speech impediment, I was a quiet, shy child who would rather eat bugs than have to give a book report in front of the class. I was in a school play, once.  Well, twice, if you count my first role as a tree.  Trees don't talk. In my only speaking role, I was a bad angel and my one line consisted of three words, "Keep the money".  That the main character decided to listen to the good angel instead, may have had something to do with the fact that my lines could not be heard if you were more than three feet away from me. I came to dread the inevitable words from my teachers, my parents, and even my friends:  "Speak up!  We can't hear you!"  That's easier said than done.

As an adult, I worked hard to improve in this area, though I never was able to project well, because leading parent meetings and giving educational talks was a required part of my job. I eventually came to enjoy speaking to groups, as long as I was speaking about something that I was passionately interested in.

That changed when Parkinson's disease became a part of my life.  Even before I was diagnosed, I started having more difficulty with speaking.  My voice became quieter and I started stumbling over my words, sometimes freezing in the same way I freeze when I move.  This was my first indication that I needed to leave my teaching job.  Doing this once during a parent talk was embarrassing enough as I would totally forget what I had been talking about.  I would do this repeatedly.  I didn't want the parents to think I was totally stupid.  Before that year was out, I let my colleagues know that I would not speak to groups at evening meetings. 

Once I was diagnosed and my medications stabilized, things got better.  I don't freeze as often either in speech or while walking. As with most everything else with my Parkinson's, evenings are always off times. I am not articulate in the evenings. Difficulty with speech is also one of the symptoms that immediately comes back as soon as my meds begin to wear off at any time of the day.

I'm not teaching anymore and I'm not required to speak in front of groups.  My friends and family understand that it takes time for me to find the words I need and they are usually patient with me.  So, why, as the King would say, should I give a shit about how I speak?

There's a good reason to care about this.  My family and friends might be used to me but I've found that people respond to me very differently depending on how articulate I am at any one moment.  That includes my doctors, even my neurologists who specialize in seeing people with Parkinson's disease.  If I am having a good day and speaking well, my doctors are more likely to take me seriously and treat me as an intelligent adult.  If my speech is slurring a bit or if I stumble for words, it seems to me that my doctors are more patronizing. 

We tend to equate articulate speech with intelligence.  This is one reason I find writing to be so therapeutic.  I don't slur my words when I write, or at least when I type.  My handwriting I can't guarentee.  If I stumble over what I want to say next, there isn't anyone around to get impatient with me.  I can take all the time I need.  When my first neurologist started reading my articles, she suddenly began relating to me more as a person than a patient.  She treated me as an intelligent adult.  I'm not saying that she treated me badly before; it's just that when time is limited, we all tend to go with our immediate reactions and judgements.  I don't know many doctors who have the time to really get to know all of their patients. 

At the end of the movie, the King has given his speech over the radio, with his speech therapist standing nearby.  He does well, stumbling a bit at the beginning but ultimately delivering his message in a heartfelt and beautiful way.  Afterward, his therapist looks at him and tells him that he still stumbled over the w's. 

"That's okay", the King says, "I had to throw in a couple of them so they'd know it was me."

If a king can do this, I guess I won't worry too much about stumbling over my words from time to time.  Maybe one day, I'll take advantage of a speech study for people with Parkinson's disease. Until then, at least when I stumble, you'll all know it's still me.