Setting Goals

Several things occurred to me this week. First of all, I realized that it's been over four years since I was diagnosed with Parkinson's disease. Then I remembered, that is to say, I was reminded that April is Parkinson's awareness month. After that, it dawned on me that April is almost over. I think that's okay because I'm still very much aware of my Parkinson's disease.

There's more, though. When I was first diagnosed with Parkinson's, I had one major goal. That was simply to learn to enjoy life on this new path that I've been given. I didn't have a lot of other goals at that time. I was busy being totally overwhelmed by all the changes in my life and in our life as a family. Lots of things changed. I had to leave my job which I dearly, dearly loved. I couldn't take walks anymore. I couldn't make it through the day without two or three naps. I was alternately very UP and then, without warning, I would be down in the dumps for hours or days. My poor husband lived through all this and, I'm sure, often wondered who this crazy woman was and what did she do with his wife. Somehow or other, he made it through. I'm glad, 'cause I kinda like having him around.

I didn't feel depressed. All in all, I was and am happy with my life. A lot of the ups and downs were due more to the challenge of getting the medication balanced. That's huge. I did a lot of things during this adjustment time and I learned a lot about how to laugh at myself and appreciate the humor in the daily challenges of Parkinson's and Dystonia.

What I didn't do was come up with serious goals for myself. True, I did learn to swear. I also started writing and developing my art work. I tell people that I'm a freelance writer and artist; “free” as in unpaid. Beyond just the therapeutic value, I didn't set any goals for my art or my writing. I wasn't looking at creating a business or writing a best seller. I was living in the moment. Wow. That's something I had to learn how to do. It was the first time in my life I had been able to let go of the baggage (or at least much of it) that I had carried around for so long. In this way, my diagnosis of PD was incredibly freeing. I stopped worrying about little things.

I was living in the moment. That's a wonderful place to be sometimes. It's nice to know I can go into that space when I need to rest up a little. It's not a place to stay all the time. I need to look back and look ahead, too. It's time to see where I've been and where I want to go. It's time to set some goals.

My first goal is to retrain myself to walk again. I wouldn't have thought this was possible even two months ago, but I've started in a physical therapy treadmill walking study. This study is just for us folks with PD. I've been walking for 30 minutes, twice a week, for four weeks now. I have two more weeks to go with the study. My speed has increased, my dystonia doesn't kick in nearly as much, and my arms have started swinging again. I don't even have to consciously think about it. My therapist, Barbara, has me walking around the neighborhood, too; at least around the block. I'm up to walking half a mile in 14 minutes. That's down from walking a quarter of a mile in 17 minutes. The first step in meeting my goal will be to continue the treadmill walking twice a week, even after the study ends. A mini goal will be to walk three quarters of a mile, or one lap of the walk-a-thon, before I need to use my walker.

 Yesterday, I went to the Vocational Rehabilitation office to see if they can help me figure out a way to go back to work. This is my second goal. I'm not sure what that look like. Regular job hours would be a challenge for me. A better choice would be to turn my art work into a business. I could be official! The Vocational Rehab folks would support me through this and help me learn the ins and outs of being a real business.

My third goal is to finish writing a novel that I started a few months ago. The goal doesn't insist that it be a New York Times best seller, nor does it have to be made into a movie that wins an academy award. I just want to finish it. I've never written a novel before and have no idea whether anyone but myself will be at all interested in what I write. With any luck, it'll be just good enough that I'll still be interested in it when it's done. The process had taught me a lot and I have met a lot of wonderful people along the way.

My last goal is to continue learning how to laugh at myself and find the humor in my everyday challenges. Oddly enough, as I start looking at where I've been and where I'm going, suddenly things can seem overwhelming again. My self confidence has plummeted in the last few weeks. Find the balance, that's what I need to do. Make my goals but be flexible. Live in the moment but don't forget where I've been. I'm incredibly lucky! That I know. I've got a wonderful family and amazing friends. I can't depend on them for my self confidence, however. That's up to me.

Maybe I should shoot for that academy award. If I accomplish my other goals, at least I won't trip as I walk up to accept it.

Book Review - Take Charge of Parkinson’s Disease: Dynamic Lifestyle Changes to Put You in the Driver’s Seat

When I was diagnosed with Parkinson’s disease, the one thing I did not do was read about it.  Quite honestly, I didn’t want to know what the future might hold for me.  At this point, five years later, I can say I’ve read two books about Parkinson’s.  One is Michael J. Fox’s book, Lucky Man, a book which helped me to find my balance after my diagnosis.  The other one is a book I’ve just recently read.  It is Anne Cutter Mikkelsen’s new book, Take Charge of Parkinson’s Disease:  Dynamic Lifestyle Changes to Put You in the Driver’s Seat.   

I was intrigued by this book when I first learned about it.  What attracted me initially was the focus on exercise and diet.  I’m a big believer in exercise for Parkinson’s and I want to learn more about diet changes that might be helpful.  I’m still not planning on doing a lot of reading up on PD, but I thought it wouldn’t hurt to take a peek at this one.  I’m glad I did.  I also loaned it to Paul Zeiger, my yoga teacher.  He read it, too, and I will include some of his thoughts as well.

Anne’s book is a combination of memoir, cookbook, and information about Parkinson’s disease.  I was initially a bit surprised.  This book wasn't exactly what I was expecting.  I guess with the words "take charge" and "dynamic" in the title, I expected to see a lifestyle change set out very specifically, telling me what to do and how to do it, all with great enthusiasm.  That it wasn’t like this at all, threw me a little.  However, I read on and was pleasantly surprised by the end of Anne's story.  

This is a gentle book, written by a cook whose husband happens to have Parkinson's disease.  The lifestyle changes are shown by their example and not shoved at us.  It's more of a quiet challenge that suggests that we create changes in our lives.  I especially appreciate the recipes and the information about antioxidants and what they do, and the section on spices.   Many of the recipes are simple, too, and use ingredients that I might actually have in my kitchen.  For the recipes and gentle stories alone, this book is worth reading and keeping on hand as a cookbook. 

We had a few minor quibbles.  Anne’s family has available resources that are greater than most of us with PD have.  I am grateful for their sake that they had these resources; it’s just frustrating at times to read about possibilities that aren’t really possible for most of us.  Paul feels the word choice of “Driver’s Seat” in the book’s subtitle is unfortunate, since many of us with PD need to get out of the driver’s seat! 

One of my favorite stories in the book is when Anne’s husband, Mike, is attempting to button his shirt and Anne hears him swearing from the other room.  As one who actually took swearing lessons from a friend after my diagnosis, feeling that this was a skill that was mandatory in my life with PD, I would have loved to hear more stories like this.  A few non-inspirational moments make me more comfortable and more willing to take seriously the lifestyle changes that are suggested.

Minor quibbles aside; this is a good book to add to our home library.  It will have a place of honor in my kitchen. 

Anne's book at Amazon

Yellow Birds for Parkinson's

Another Walk in the Park or Parkour for Parkies

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 7^th, 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!

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.

Never Put Birthday Candles on Lasagna

It’s a tradition in our house, on the night before a birthday, to set the table beautifully, with nice china plates and our best cups or glasses.  We have a candle or flowers as a centerpiece, and a birthday card waiting on the table.  Sometimes we even drink our orange juice out of wine glasses.  Birthdays are important days and need to be celebrated.

Patrick’s birthday was on Saturday, the day after the end of the first week back at school.

As a teacher, whenever we came back to school after a holiday, it was an adjustment.  Teaching takes an enormous amount of energy, which if fine, once you’ve gotten used to it, but until then, tired doesn’t even begin to describe how you feel.  At least, that’s how it was for me.  One of my colleagues tells me that I should never say I’m tired.  That’s too negative.  I should instead say, “I’m relaxed”.  It’s a way to turn it into something positive, he says. 

I don’t buy it.  When I’m tired, I’m not relaxed.  My Parkinson’s nervous system takes over and my muscles have their own agenda.  They don’t consult me to see what I want to do because they know I’m going to want to sleep, or at least rest.  That’s not in their plan.  When my body is tired, I don’t have the strength to stop my muscles from doing whatever they’re going to do.  My medications don’t work when I’m tired, either.  I have no choice but to go with the flow… or in my case, the jerks, shaking, and occasional collapsing onto the floor.

School started again and I’m teaching an art class every afternoon.  By the time Saturday and Patrick’s birthday came, I was…tired.  The table was not set nicely.  There was no birthday card.  We had one present for him, but the book we had ordered hadn’t arrived yet.  I felt awful.  What a terrible mother I was to neglect my son’s birthday celebration.  So what if I was tired. 

I decided I would make lasagna and bake a nice cake. 

At noon, I was gathering ingredients together.  That’s when John and Coco and the baby came to bring Patrick’s birthday present, have lunch, and visit for awhile.  I hope they didn’t think I was being rude.  I was too tired to talk much.  I hardly even noticed when Mattheus learned how to open the glass door of the book case where all our breakable knickknacks are kept.   I did enjoy their visit, however wonky I was feeling.  It’s always good to see them. 

By the time they left, I knew I wouldn’t have the energy to make lasagna and cake.  We decided to hold off baking the cake till the next day when we would have a big family gathering with the Reinhart clan.  Then everyone could celebrate together.  It made sense.   I still felt awful but at least I could make a nice big gluten free lasagna; a good birthday treat for Patrick.

When I helped with the afterschool program, I always celebrated birthdays with the children.  However, because I rarely had warning of when a birthday was coming up, I learned how to improvise.  We had candles on muffins, cookies, and even once on a rice cake that had a thick layer of cream cheese spread on it.  When you sing “Happy Birthday”, there must be candles.

This is why we ended up with candles on the lasagna.  At the time it seemed like a good idea.

I served Patrick first, of course.  He was the birthday kid.  I put the candles on his generous helping of lasagna and set it at his place.  It looked wonderful!  Then I served the rest of the family and we sat at the table.  I had just instructed everyone that we were about to light the birthday candles and sing to Patrick, when I saw that he was taking the candles off and putting them on his plate. 

“Why are you doing that?” I asked.

Patrick picked up a candle.  “They’re melting,” he said, and I could see the rest of them slowly sinking into the very hot lasagna. 

In the end, Patrick lit one candle and held it while we sang.  He was gracious about it, as he is with most things, and even ate the little bit of wax along with his meal.  He didn’t have much choice about that.  Today, Sunday, we’ll have leftover lasagna with John and Coco and Mattheus.  Our big family gathering has been postponed due to the snow but we’ll celebrate here.  We’ll even have a cake.  It’s done already and cooling in the kitchen. 

I think, however, I’ll wait awhile before I put the candles on top.

Happy birthday Patrick!!

New Year’s Resolution

Dear God,

For the New Year, I resolve to believe in you.  I don’t say this lightly as there have been many things I have struggled to understand over the past few years.  During this time, I have assured myself that, if you do exist, you wouldn’t mind my struggling and questioning.  If I had died at a time when I refused to acknowledge you, I know you would not have held this against me, either.  If I was asked to believe in a god who was that mean spirited, I would refuse and spend my days in atheistic bliss.

I don’t promise to understand you.  Many people have tried to teach me about you and it gets confusing.  Some people tell me you are one god.  I can see this.  Most of the world is so beautiful that it’s hard to imagine that it could have been created by committee.  If there were many gods, I’m sure they wouldn’t agree on everything.  It would have taken longer than seven days.  In fact, we’d still be waiting for you to finish the landscape and create us.  I don’t count out the possibility of many gods, however, especially when I look at certain animals, like the daubentonia madagascariensis or the proboscis monkey or even the alpaca, which, when shorn, looks like a cross between a camel and a Dr. Suess drawing.  Either there was a lot of compromising going on or one of you has a bizarre sense of humor. 

I prefer to let you be who you are and I won’t worry about the details.    

Some say you have all sorts of rules that we need to follow.  Of course, I have yet to find those who agree on what those rules are.  There are people who insist that you’re interested in our politics and we need to vote for the one YOU want in office – another rule.  I don’t get this at all.  Why would you go to the bother of creating intelligent beings if you don’t expect us to think?  I can’t imagine why you’d be interested in politics, anyway.  Your have enough to do, just keeping the universe in order.  I suspect you have more trust in us than we have in ourselves.    

I don’t promise to be religious.  Church ceremonies can be beautiful, but I don’t want to be a part of an organized religion.  They think they know exactly who you are and that makes me nervous.  When I look at history, I see that there has been too much violence in this world that is done in the name of religion.  Much of what is done in churches doesn’t seem to have anything at all to do with you.

I will get angry with you.  I try to believe that everything has a purpose and that the purpose is ultimately for our good, regardless of what it seems at the time.  I can’t always do this.  You’ll have to give me a little leeway here.  Karma and reincarnation make sense to me, most of the time.  I’ll get angry when things seem to go overboard and people start to suffer needlessly, as least in my opinion.  I think you’d prefer I get angry rather than wishy-washy. 

Just because I’ve decided to believe in you doesn’t mean I need to talk about you.  When I was young and believed in you for the first time, I talked about you a lot.  That’s like any friendship, isn’t it?  I still do that whenever I make a new friend.  It undoubtedly drives my family nuts, but there’s something magical that happens and it’s impossible not to share that joy.  You and I, however, have had a relationship for many years already.  It’s a different kind of relationship now, quieter and more realistic.  There’s no need to talk about it all the time.  I won’t brag about what you do, either, or expect you to help with all the little things in my life.  You’ve created me with a heart and hands, as well as brains.  I can struggle and figure some things out for myself. 

It’s the least I can do.

Happy New Year,

terri