Neither Fish, nor Fowl, nor Good Red Herring - the trials and triumphs of having a unique medical diagnosis

A civilized society is one which tolerates eccentricity to the point of doubtful sanity.
~ Robert Frost 

A funny thing happened when we got back from Chicago. The very next day, fresh from two weeks of relaxing at Ronnie's house*, I had an appointment with my study doc, a neurologist specializing in movement disorders. I'm taking part in one of her clinical studies.

This was a major visit and included a thorough neurological evaluation. I tapped my fingers and toes, made circles in the air, walked up and down the hallway, and answered questions in the cognitive part of the test. I am never thrilled when the cognitve section comes up. They have a habit of asking ridiculous questions. I mean, come on, are we really supposed to be able to count backwards from 100, subtracting 7's? When, in life, will I need this skill? Is it important to be able to look at a list of 10 totally random, unconnected words, and then recite them back without looking at the list?

I've never yet failed the test. You're probably expecting me to say, “until now”, but that's not the case. This time, not only did I not fail the test, I ACED it! There could be several explanations for this. Maybe this was an easier version of the test. Maybe I really am intelligent. Maybe I was just calmer than usual.

It's a funny thing with a lot of these neuro muscular disorders. Stress makes everything go haywire and then the meds don't work and I move like one of the monsters in a B horror movie. This effect is talked about a lot. We all know what stress does to us. What isn't talked about is the opposite. What happens if you have an extended time that is completely calm and non-stressful?

I realize this rarely happens to anyone. Maybe this is why no one mentions it. It happened to me. Ronnie's house, despite being there with our daughter, who was recovering from surgery, was surprisingly non-stressful. There were all those nooks and crannies where we could sit and read or watch a movie; and of course, there were desserts everywhere we looked. I couldn't live this way all the time. I'd be terribly bored and terribly overweight. For a couple of weeks, however, it was nice.

So I rested, relaxed, and came back to ace my neuro exam. This prompted my doctor to question my diagnosis. I'm serious. After being diagnosed for over 5 years, suddenly my doctor says maybe I don't have Parkinson's. Now, don't get me wrong. I wasn't cured suddenly. I was just looking better and performing better than I should; especially in the cognitive region. The old grey matter was functioning admirably. What was my doctor thinking? We talked for awhile and I came home and immediately got onto the internet to research something called “Dopamine Responsive Dystonia”.

The other day, I went back to Kaiser and I discussed my research with my regular neurologist, Dr. Lindsee Hudson.  She is great. We often spend at least half the visit laughing at one thing or another. This time was no exception.

“From what I read,” I informed her, “it seems I either have Early Onset Parkinson's Disease with Dystonia that responds well to Dopamine or Late Onset Dopamine Responsive Dystonia with Parkinsonisms.”

“You got that right,” she replied. She went on to say that they are treated the same way. If, and this is a big if, I wanted to, and had an extra $7,000 to get a DATscan done, we might be able to determine exactly what this is.

Okay, I don't have the money to spend on a DATscan, and I'm not sure I would do it, even if I could. Why? Dr. Hudson understood immediately. She had thought of the same reasons before I even brought them up.

1. There is a large community out there for people with Parkinson's disease (PD) with lots of classes and support. There isn't anything like that for people with Dopamine Responsive Dystonia (DRD).

2. In the PD community, I am considered young. In the DRD community, I'm considered ancient. DRD usually hits in childhood, late teens are considered to be old.

3. I definitely have parkinsonisms. One website maintained that late onset DRD was really a sign of early onset PD. I'm not sure there's enough understood about either disorder to know what is what.

4. Even within the community of people with Dystonia, DRD is rare. According to my doctor, I'd be a community of one.

I'll stick with the diagnosis of Parkinson's, but there's something cool about this. I don't fit easily into any category. Not really. I don't follow the typical pattern of Parkinson's and I'm too old to fit nicely into the DRD group.

I'm unique. My husband didn't bat an eye. He said he'd known this for years. My son just said, “Weird”. I thought he meant the whole situation. Seems he meant me.

I don't know what this means for my future, not really. My doctor is optomistic. She says I must have some sort of unique variation. Maybe something in between the two disorders, who knows? She says, whatever it is, it seems to be a good variation. I'm doing better than I should be doing at this point and I don't seem to be effected cognitively at all. I thanked her for not doing a cognitive test that day. Having rushed to get to the appointment and hitting every single red light on the way, I wasn't exactly in my non-stress mode.

In fact, I was feeling a little more like one of those monsters from the old horror movies.

Uniquely weird.

*Ronald McDonald House... We're on first name basis now.

Stepping Out

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.

Of Goals and Resolutions

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.

Making Friends with the Mirror

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

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”.

Speak up!

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.

Off Road Traveling and that Someday which is Today

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.

Regular Exercise and Parkinson's

When I told the parents in my kindergarten class that I would not return to teach the following year because I had been diagnosed with Parkinson’s disease, I felt compelled to let them know that there were some positive aspects of this diagnosis.

These included:

1. Now I have something to blame things on. Every time I am a little spacey, uncoordinated, forgetful, or downright weird, I can just blame it on the Parkinson’s. It’s not me.

2. Now I have something in common with Michael J. Fox.

             and.....

3. No one will ever, ever expect me to run a marathon.

There were other reasons, too, why I looked at this diagnosis as being very positive. For one thing, my doctor had not been sure at first that this was Parkinson’s. Leave it to me to be just a little bit different and more complicated. I try hard. I went through several neurological evaluations and the doctor talked with me about a number of possibilities, including Huntington’s and a strange disorder which she referred to as “Wild Frenchman from Maine Syndrome”.

I almost wished I would be diagnosed with that last one. I think I would have had a different reaction when I told my family and friends. Tell others that you have Parkinson’s and the response is usually the same. “Oh, I’m so sorry.” This comes with a pat on the arm and a sad smile. Not that I minded, it’s just that I didn’t really know what to do with that. But just think of what would have happened if I'd told my family and friends that I was diagnosed with “Wild Frenchman from Maine Syndrome”. They'd be too busy laughing to feel sorry for me.  That I could handle. 

The possibility of Huntington’s was not something I wanted to contemplate.

When the doctor finally told me that she was 95% sure that I had idiopathic Parkinson’s disease, she had a big smile on her face and said, “Let’s hope it’s that!” We practically danced out of the room.

The reason that the doctor was so thrilled was because Parkinson’s is the most treatable of the neuromuscular disorders. The medications are impressive in how quickly they can make you feel like a normal person. And now, many researchers are saying that exercise can be one of the best treatments for Parkinson's, perhaps even better and more effective than medications and even surgery for keeping you moving. Walking, biking, dancing, and yes, even running marathons are considered to be GOOD for you.

Provided, of course, that you actually do it.

I was involved in an exercise study for 16 months. During this time, I rode my exercise bicycle for 30 to 40 minutes every day. I was stretching and even did some exercises with weights. And I recorded every exercise session. Once a month, along with the other members of our group, I met with the physical therapist who made sure we sticking to the program. We had to show our exercise logs to the therapist. I did well! Then the study was suddenly over.

It’s been about six months now since it ended and I have not exercised regularly since then. When I recently had to check in with the rehab doctor, I was gently scolded and urged to begin exercising again. Actually, when I think about it, she wasn’t really that gentle about it. She wanted to know what my barriers to exercising were. I said it was time. Life gets busy and it’s hard to have time to exercise.

Make the time, she said.

I had just about caved in and decided that I would have no other choice than to get on the bicycle again when something remarkable happened. A friend of mine told me about another exercise study that had taken place. This one showed, amazingly, that doing craft work, SUCH AS KNITTING, had the same health benefits as aerobic exercising! Wow. If this is the case, and I have no reason in the world to doubt this person (not to mention the fact that I have no desire to doubt her), then I can tell my doctor that I am exercising regularly. In fact, I am exercising about two hours per day!

Now, I know there will be a few people who will just have to go on the internet to see if this is really true. If you find out, let me know.  However, even if there are those who refute this information, I’m sure it’s just a matter of needing more research. For this, I’d be happy to be a guinea pig.

I’ve got plenty of knitting to do.