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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 Category: humor

Brunch for a Bunch or Growing up with the Reinhart's

Terri Reinhart

A couple of girls in my high school class were arguing one day about who is included in one's immediate family. One insisted on only including your parents and siblings. The other just laughed. No, she said, your immediate family includes your grandparents, aunts, uncles, and all your cousins, and everyone comes to every family gathering.

My mother-in-law, Natalie, was even more inclusive. Family gatherings included all of the above plus a few neighbors, several of her teacher friends, friends of her children, and maybe a family or two from the school where she taught.

I think I fell in love with my in-laws as quickly as I fell in love with my husband. Chris was smart. He took me to meet his family very soon after we met. It was a Saturday or Sunday evening and everyone had come home for dinner. I learned, over the next few months, Chris and his 5 siblings were free to invite friends for dinner and they frequently did.

Natalie loved to cook. She had been a nutritionist in the army during WWII, stationed in England. She was used to cooking for hungry crowds. This was good, because during the next year, three of her children married, including Chris and I. As our families grew, the family gatherings grew, too. Before long, all of us were married and bringing our children along. You'd think with 6 children and their spouses and 18 grandchildren, this would be enough immediate family for anyone, but Natalie found people endlessly interesting and there would often be someone new to meet, in addition to a few old friends, colleagues, and neighbors. If anything, the gatherings became larger and included more people as the years went by.

Natalie passed away in November of 2006, five years after her husband, Paul. Chris and I visited her the day before she had the seizure from which she never awoke. She dozed on and off, but whenever she was awake, she asked about everyone in our family. Just before we left, she woke up to say goodbye. Looking up at us with bright eyes and an even brighter smile, she said, “It's been fun, hasn't it!” On the way home, Chris told me he felt she was speaking more of her life than of the moment.  It wasn't until later, we learned these had been her last words.

We still get together, but not as much. Natalie was the matriarch and truly, I believe people came together to be with her. She left us with memories of warm meals, large family gatherings which never felt crowded, and a gentle sense of humor which occasionally included novelty eyeglasses (with eyeballs on springs) and an umbrella hat.

She also left her recipes, organized in cardboard boxes, some typed, some handwritten, and some with the unmistakable purplish blue print of the school mimeograph machine. On the recipes, she kept a diary of sorts; notes on doubling the recipes and how much was left over, who came to each gathering, and how they set up the tables and chairs. Our son, John, took some of these recipes and created a lovely recipe book, which is available online.  Take a look!  He included copies of some of the original recipes, notes and all:

Easter Brunch and a Bunch More

Now, our own family is growing. Our third grandchild is due to arrive any day now. Just having our kids and grandkids together makes for a full house. Lately, however, both Chris and I have been missing the large Reinhart family gatherings and this year, we invited everyone we could think of to join us for Easter. It was wonderful!

We plan to continue this tradition, though I would never try to take Natalie's place. That would be silly. For one thing, those would be big googly-eyed glasses to fill.

​clicking on the photo will take you to the online store where one can purchase googly-eyed glasses & other novelties

​clicking on the photo will take you to the online store where one can purchase googly-eyed glasses & other novelties

Canes, Trains, and No Automobiles

Terri Reinhart

I've known it for a long time.  Someday, someone would be telling me to give up my car keys.  I just didn't expect it this soon.  I also didn't expect the news to come from our mechanic.  As bad as this sounds, I'm really lucky.  I wasn't asked to give up my license, just this particular car.  The first mechanic's verdict was, "How attached are you to this vehicle?"  The second mechanic described our car with a string of obscenities.  

Fortunately, we still have Chris' truck and selling the old car for junk helped offset the cost of getting the truck in good repair.  We are now a one pick-up truck family.  I'm opting for a bus pass.​

I've been riding the bus all year to go to my classes at the University downtown, and I've really enjoyed it.  The drivers with RTD bus service in Denver have been incredibly friendly and helpful, even when I ride my mobility scooter onto the bus and take up 4 places while paying only half the fare.  I was surprised at first.  Are the drivers always this nice?  So far!

What's great about riding the bus, besides not having to look for a parking space on campus, is how incredibly independent I feel as I get off at 16th street mall, downtown.  Especially if I have my scooter, I feel I can go anywhere and do anything.  ​On campus, it's nice to be able to go faster than the students who are walking.  I haven't run anyone down yet, but I have had a couple of students get out of my way, quickly.  I know they were just being polite.

Lately, I've been using my walker instead, as my scooter needs new batteries.  Those will have to wait awhile.  Until then, I have to admit, the walker is a huge help.  It wasn't easy convincing myself to use it and sometimes I manage to fool myself into thinking I don't need it.  I tried using a cane when I first had trouble walking.  Canes are cooler than walkers.  I have several.   The purple flowered cane works the best, but the ones I really like are the carved ebony canes, one from Sudan and one from Juba. Unfortunately, a cane will often trip me up.  

​It's those pliés.  My legs still seem to think it's a good idea to practice dancing at odd times.  Nothing I say will convince them to at least inform me when they decide to do this, so the walker is a good idea.  My only challenge with the walker is in the classroom building.  With nice smooooth tile floors and long hallways, it's oh, so tempting to run a little and jump on for a ride.  

This is not tempting on the sidewalk, especially in the older neighborhoods.  Those sidewalks are not designed with older people in mind, especially those older people whose bladders don't like to be jarred suddenly.  ​

Back on the bus, I am treated as a very important passenger.  I get to ride the lift up the steps and I can sit up front.  If I have the scooter and another scooter or wheelchair rider is there, we spend the whole ride comparing our vehicles as though they were a couple of sport's cars.  We've immediately become comrades.  My regular bus drivers know me by now and they know where I get off.  

I haven't ridden the light rail in Denver yet, but I took my scooter to Chicago last fall.  Frontier Airlines staff were exceptionally nice and I was able to ride all the way to the gate.  Once in Chicago, we took the buses and trains.  I love the trains in Chicago.  They are rather old, though.  Riding with the scooter meant letting the station attendant know I'd need a ramp.  He or she would go get it, a heavy metal platform, and, when the train arrived, would place it down so I could board safely.  Then the attendant would phone ahead to where I was to get off and alert the attendant there to be ready with the ramp.  ​

At this point, I still have my driver's license and I can still drive.  When the time comes for me to give up driving completely, I want to smile and say, "Sure!", because I know I won't be giving up my independence.  ​

​In fact, as soon as I have new scooter batteries, I won't miss the car at all.

​Denver from the Auraria Campus

​Denver from the Auraria Campus

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

Terri Reinhart

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

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.

 

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


Regular Exercise and Parkinson's

Terri Reinhart

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.

New Year's Resolution - busted already

Terri Reinhart

I blew it already. I had such high hopes of keeping this year’s resolution ALL year, without slipping. These resolutions are important. We really should be good role models for our children, shouldn’t we? And, of course, I foolishly thought that this would be an easy resolution to keep. I am finding that the art and skill of dawdling is taking a lot more attention than I had imagined.

 

Sadly to say, I found myself multi-tasking yesterday. I was riding my exercise bicycle, watching a movie, and knitting at the same time. Lounging in the dentist’s chair later in the day, I also had my knitting on my lap and managed to get about 10 rows done while the dentist did whatever he was doing in my mouth. When it came time to make dinner in the evening, there I was, making out my to-do list for the next day, scheduling an appointment over the phone, stirring the rice, adding broth to the chicken, and, naturally, I had my knitting on my lap, too. My mind was racing. What will I donate to our school auction? How on earth am I going to get all my sewing done on time? Did I just put cinnamon on the chicken?

 

What I can’t figure out, is why some people seem to think that multi-tasking is a good thing. They even brag about their ability to multi-task as though this is the absolute proof of their superior intelligence.

 

Who even invented that word? What does is really mean? I suspect that it means something like, “doing many things badly at the same time.” Moms everywhere, and dads, have a great deal of experience in doing many things at once, though not by choice. Some of us even become relatively good at it. I remember the days when my children were young and I would be holding a baby in one arm, nursing, and buttering toast with the other hand, all the while I was watching my toddler and trying to discourage him from climbing into the dishwasher. I could do almost anything one handed, even break eggs. Sure, I had to pull all the little bits of shell out afterwards, but hey, I could do it!

 

I also remember the day when I was so proud of everything I had accomplished. Two little ones, clean and fed and playing happily on the kitchen floor while I worked to clean up the kitchen and prepare dinner. I busily went back and forth between stirring the sauce on the stove, wiping down the counters, cutting up vegetables for a salad, and singing along with the latest children’s music playing on our old stereo. It was the perfect picture of domestic life.

 

Then the phone rang and someone knocked on the door at the same time. I quickly answered the phone and asked the person on the other end to hold on a moment. I answered the door to a neighbor wanting to borrow a couple of eggs. I invited her in and picked up the phone again, stirring the sauce slightly and turning on the oven to heat it up.

 

I had just turned down the opportunity to have a family portrait taken and receive a free 8 x 10 glossy photo, when my neighbor yelped and grabbed my sleeve. Smoke was pouring out from underneath the stove and little flames were beginning to appear. What the.....????

 

I dropped the phone and opened the broiler drawer that was underneath the stove and found that my son had decided that this drawer made a perfect bed for his stuffed bear. As soon as I had turned on the oven, we had fried bear. Fortunately, there was just a tiny corner of the bear that was actually flaming and I was able to pick it up with tongs and put it in the sink, turn on the water, and douse the flames quickly. By then, I could smell the sauce burning, the kids had managed to knock over the cutting board, and the vegetables were scattered on the floor. I could hear someone on the phone loudly shouting HELLO?! My neighbor had taken her eggs and run. I briefly considered returning the bear to the broiler and serving it for dinner.

 

I looked forward to the day when the kids would be old enough that I could go back to work. My goal was to have a job that didn’t require doing more than one thing at a time. So, what did I do? I taught kindergarten. But at the very least, I did have a 45 minute break every day.

 

Now that I am retired, I am determined to take life more slowly. A couple of years ago, my oldest son gave me a wonderful book, titled, In Praise of Slowness, Challenging the Cult of Speed, by Carl Honore, which describes the origins, intent, and benefits of the “slow movement”. It talks about how our culture has become dependent on clocks, how we schedule our lives and try to fit in as much as possible. Even our children’s play time is scheduled into “play dates” and we hurry to get them from play to music lessons to school to dinner to bed. It also tells how we can change this attitude towards life and time. I like the idea of a slow movement. What could be better? In the spirit of the book, I began reading, and two years later, I’m still on chapter two.

 

One of my favorite bits in the book, so far, is when the author talks with a Buddhist teacher about these subjects of time, living by the clock, and scheduling our lives. Nearing the end of their conversation, the Buddhist teacher suddenly looks at his watch and, very sheepishly excuses himself. He had an appointment to keep and would have to hurry to get there.

 

Like I said, dawdling takes much more attention than I realized. Going slow is an attitude change, even when life throws everything at you at once. It’s about having a balance, I suppose. I only know that if I’m not careful, I’m going to start multi-tasking again.

 

And that would never do.