John Argue - Parkinson's Disease and the Art of Moving

Here is the link to John Argue's website:

http://www.johnargue.com/argue_bio.html

Exercise is a walk in the park for Parkinson’s

In April, my daughter and I watched our friend, Teddy, cross the finish line as he completed his first half marathon run.  I couldn’t even begin to imagine running that far, much less doing it in just over two hours.   One of the benefits of having Parkinson’s disease, I have always said, is that no one will ever expect me to run a marathon.  I was tempted to change my thinking on this however, as I got caught up in the excitement and, in that moment, I wished I could run, too. 

Last weekend was the “Shake, Rattle, and Stroll” walk for Parkinson’s disease in Denver.  It was a 5K walk to raise money for the Parkinson’s Association of the Rockies – or PAR.  PAR is a great organization.  They offer a number of different exercise classes and many other services.  It’s the emphasis on exercise that really interests me right now.   

Exercise is arguably one of the most helpful treatments for Parkinson’s disease.  One person who believes this strongly is John Argue.  Mr. Argue has been teaching movement and voice for people with Parkinson’s since 1985.  His approach reflects his broad experience with yoga, tai chi, and dance, and is brought with a gentle humor and imagination, as he encourages his students to “make friends with the floor”.   As in our yoga class, the goal is to make us aware of how we are moving. 

Our yoga teacher, Paul Zeiger, led us through some of Mr. Argue’s exercises this week.  As a former kindergarten teacher, I was intrigued when the exercises included imagination.  One exercise had us leaning to one side and picking up the little mouse by the back chair leg.  Then we went to the other side and picked up the mouse’s wife.  Here is where I had my only issue with the verbal instructions to this exercise.  Having picked up these mice, we then were simply instructed in the next move.  I sat there puzzled for a second or two.  What do I do with the mice?  Nearly twenty years of leading movement circles with young children and creating imaginative stories for circle time had its effect, and I had to mentally let the mice go before I could move on to the next exercise.

Joining the yoga class and becoming aware of all the times when I can "exercise" by doing my daily living activities with conscious movement has made a huge difference in how I feel, both physically and emotionally.  People who haven't seen me for awhile are amazed at how much better I look and how well I am moving.  I'm not so sure that I am really moving all that well, but I think what people notice is that I am standing up straighter.  It’s amazing how much more confident I feel when I stand up straight.  The PAR sponsored yoga class has gone a long ways in improving my quality of life with Parkinson’s disease.

This is why we wanted to support the "Shake, Rattle, and Stroll" walk for Parkinson's disease last weekend.  I was excited about walking, too.  Maybe I was still caught up a little in the thrill of watching the half marathon in April, but I thought that just maybe I could do it. 

The night before the walk, I went over my list of necessary items to bring along:  water bottle, medicines, hat, sleeping bag, camp stove, food, a towel, and a pointy stick.  I started gathering everything together and was just rolling up the sleeping bag when Chris stopped me. 

“What are you doing?” 

I showed him my list.  He didn’t seem to understand why I needed some of the items. 

“Come on,” I told him, “it’s a 5K walk.  That’s over THREE MILES!  You know how slow I am.  What if I don’t finish by nightfall?” 

“Oka-a-ay,” he said, doubtfully, “so the sleeping bag is to sleep in, the stove for cooking, and the food to eat.  Why are you packing a pointy stick?” 

“In case we run out of food,” I had thought that would have been obvious.  I wasn’t sure if there were fish in the lake, but I knew there were more than enough squirrels around.  If we were desperate we could always have squirrel on a stick, roasted nicely over the camp stove.

“Wouldn’t it be easier to take your scooter?” my husband logically intervened. 

I sadly put all my supplies away, except for the water bottle and hat, and we loaded the scooter in the trunk of the car.  Emma agreed to ride the scooter while I walked as far as I could.  The preparations done, we had a lovely surprise a few minutes later, when Teddy called to let us know he’d be joining us for the walk.  Another dear friend, Marie, had also promised to join us.  It would be a great time!

It was a great time.  We warmed up with yoga and tai chi in the park and then started on our way.  I made it halfway through the first 1K before starting into my “losing at Twister” impression then rode my scooter till we were close to the end.  I let Chris take the scooter as I walked across the finish line. 

I know that, compared to a half marathon, that this was just a walk in the park.  I was pleased with my accomplishment, however, and will work towards being able to walk an entire 1K next year.  That’s enough of a marathon for me!



FCC and FDA to hold Public Meeting about Regulatory Issues concerning Medical Devices

http://www.fda.gov/MedicalDevices/NewsEvents/WorkshopsConferences/ucm215046.htm

I wanted to post this for anyone interested in the issues of implanted medical devices, such as with the DBS surgery, and electrical frequencies that can interfere with these devices.  Gary Olhoeft (see other entries with his name) has sent this on.

Celebrating movement!

I was lucky enough to see Peter Davison perform several times at our school over the years.  He is absolutely amazing to watch!  As movement is sometimes difficult for me, I love to watch someone like Peter Davison move with such beauty and grace.  ENJOY!

Another person who is amazing to watch is a former student of mine, Dylan Baker.  His stunt work will be seen in the upcoming movie, "Freerunner". 

Thoughts on Memorial Day

I am digging a trench tonight.  As it doesn’t take a whole lot of thought to dig a trench, I let my mind wander around a bit.  One of my first thoughts surprised me.  I realized that I had a harder time digging two years ago then I do today.  How can that be?  I’ve had Parkinson’s disease for 8 years now.  Two years ago, I could work for ten minutes before becoming so fatigued I would have to sit down and rest.  Tonight, I worked for two hours.  I may pay the price for overdoing it, but it will be worth it! 

After this thought flit through, my mind went on to another topic.  Today was Memorial Day, the day we honor the soldiers who have fallen in service of their country.  What does that mean to me?  We had a very traditional Memorial Day celebration.  Chris put out the flag and we invited my parents over for a barbeque.  It doesn’t get more traditional than that, but what does this have to do with Memorial Day?

Having settled in on this topic, my mind began delving into some uncomfortable stuff.  I’ve always considered myself to be a pacifist.  I’ve never believed that we should go to other countries and kill people.  Aren’t we intelligent enough to figure out a different way to solve our differences?  I’ve struggled with the idea of supporting our soldiers.  Am I supporting war and violence and killing, if I say I support our soldiers?  I am not always so sure of our government’s motives to be certain that their sacrifice is for a noble, worthy cause. 

The trench is getting deeper.  When it is deep enough, I will bury chicken wire in it.  I am determined to make the pens for our chickens, ducks, and geese, predator proof.  The buried wire is to discourage foxes and raccoons from digging under for a late night snack.

My father and my father-in-law were veterans.  My father-in-law parachuted into enemy territory, not because their plane had been shot down, but because of some stupid argument between two of the crew and a miscommunication that led them to run out of fuel.  That I know of, he only spoke of this once.  My father had a different experience.  He was on board ship in the north Pacific and the biggest enemy he battled was the sea.  My uncle was in major combat during WWII, fighting opposite Patton’s company.  He came back with post traumatic stress and nothing kind to say about General Patton.

My trench is deep now, the chicken wire is in.  The next task is to fill it up with dirt and tamp it down.  My makeshift duck and goose house is built with cinder blocks.  It looks like a fortress and Chris suggested we put turrets on top.

There have been former students of mine who have enlisted in military service.  So far, they have all come back safely, though each has had challenges in entering back into civilian life.  More than one has gone from battling enemies overseas to battling enemies within themselves, such as alcoholism, drug abuse, and depression.  They are making it, however, and I cheer them on whenever I can. 

My trench is nearly done.  When the geese are fully grown, I shouldn’t have to worry about foxes.  A full grown male goose is capable of defending itself.  The man who sold us our goslings once saw a goose tear a fox to shreds.   Geese are normally docile creatures.

Some soldiers are killed in service of their country.  Some soldiers kill in service of their country.  That is a sacrifice, too.   I’ve known a number of veterans over the last ten years and I have learned much about their experiences.  They, and their families, have to believe that their work was necessary and honorable.  They have to believe there is a reason for their sacrifice.  The veterans I have known will talk proudly about their service; however, when they talk of specific experiences, they all say the same thing:  War is stupid and ugly and there should be a better way. 

Even though I still consider myself to be a pacifist, I know there aren’t any easy answers to conflicts in our world.  I hold out hope that we can learn to solve those conflicts in nonviolent ways.  I don’t know whether our government’s motives have always been honorable, however, I have no doubt that the young men and women who enlist believe in what they are doing.  They are our warriors, defending our country.  They deserve our support.  My hope for all of our warriors is that they will never be asked to do anything that isn’t worthy of the sacrifice they are making for their country.  I hope they will always see others, even the “enemy”, as real people.  No one gives their service as a warrior, regardless of how honorable that service may be, and comes through it unscathed.  I hope all of our warriors come back and are able to put together all the pieces of their lives, and heal. 

My trench is finished, the dirt packed down tight around the wire fencing.  Now my mind will stop its wandering and settle for awhile.  My ducks and geese are safe now from the many foxes and raccoons that wander our neighborhood at night. 

I am grateful tonight for many things.  I am feeling better than I was two years ago.  I am exercising and my Parkinson’s is stable, for the most part.  Tomorrow I can pick up my prescription medications from Kaiser and be back on track with that, too.  Thanks to President Obama, we have a health care plan in place now that will eventually take away the Medicare “donut hole”, something I will fall into in about three months.  Best of all, we have a president who is thoughtful.  I might not always agree with everything that President Obama does, but I am constantly reassured that he does not make decisions lightly.

I know he is struggling with these questions much more than I am.  



Another Road

I have found health insurance.  Yesterday, I filled out the online form to have my Medicare managed by Kaiser Permanente.  This wasn’t really in my plans.  I have been very happy with my doctors at the University clinics; however, the Kaiser insurance is affordable and will help me to bridge the “donut hole” prescription drug gap by covering my generic prescriptions.  I was also pleased to learn that there are neurologists at Kaiser who trained under my doctors at University.  Still, it is a difficult to think about having to get to know yet another set of docs. 

Before I make this change, I would like to take a moment to acknowledge these doctors from the University of Colorado Health Sciences Center who have guided me thus far in my Parkinson’s journey.   In a system that doesn’t lend itself well to creating close doctor/patient relationships, the neurologists and others involved in my care never made me feel as though I was just one of the hundreds of patients that come through their clinic.  So, it is with a little sadness and a whole lot of gratitude, I will be saying goodbye to some amazing people.

Dr. Olga Klepitskaya

Dr. Klepitskaya was the first doctor I saw in the Movement Disorder Clinic.  I had my first thorough neurological evaluation with her.  She found me and my symptoms to be “interesting” and she occasionally called out to a student to bring the video camera to film me as I walked down the hallway.  She has been the one to help get me stabilized on medications so that my Parkinson’s symptoms are minimized as much as possible.  She took the time to read some of my Parkinson’s journal articles and saw me as a person instead of just a patient.  She also put up with me when I got teary for one reason or another, or for no reason at all, and she expressed her concern about whether I might be experiencing depression.  My response, I remember clearly, was to tell her, in the midst of my tears, that I had never felt less depressed in my life.  I’m not sure if she bought it, though I meant what I said!  Dr. Olga has been my consistent neurologist since my diagnosis and I feel very fortunate to have benefited from her expertise.

Dr. Deborah Hall

Dr. Olga referred me to one of Dr. Hall’s studies so that I could get a free second opinion and confirmation of my diagnosis of Parkinson’s disease.  I received a very thorough neurological exam and donated some blood for the study.   Dr. Hall then told me, with a huge smile on her face, “I’m 95% sure you have idiopathic Parkinson’s disease.  Let’s hope it’s that!”  Her attitude that “if you’re going to have a neuromuscular disease, Parkinson’s is the one to have”, has stuck with me through the years.  PD is very treatable.  You don’t die from Parkinson’s, you die with it.  From this beginning, Dr. Hall set the tone for my journey.  I am so grateful to her for this.  Dr. Hall actually left the CU Health Sciences Center before I did.  She is now an Assistant Professor of Neurological Sciences at Rush University Medical Center in Chicago, IL.  

Dr. Maureen Leehey

Each of my doctors has had their unique role in helping me to learn how to live with my diagnosis.  When Dr. Leehey would come into the exam room, I would inevitably breathe out and relax.  Just by her presence, she kept me calm and helped me to have confidence in my own ability to understand and manage my health.  When I struggled with the idea of applying for disability, Dr. Leehey was reassuring, “When you have Parkinson’s, you can remain active but there will come a time when you cannot be gainfully employed.”  This was such a different message than I had gotten from anyone else.  With Dr. Leehey, I have felt included in the process of determining what my needs were and how to meet those needs.  I have been a partner, not just a patient.  Fortunately, I am currently enrolled in a study with Dr. Leehey and will be for two more years.  I will still have a couple more visits with her.   

Dr. Jacci Bainbridge

Dr. Bainbridge is working with Dr. Leehey in the study mentioned above, and it was she who first contacted me about participating in this study.  She introduced herself as Jacci and it was months before I learned that she has her Doctor of Pharmacy and is a professor at the University Of Colorado College Of Pharmacy.  I have since learned that she has twice been awarded the honor of “Professor of the Year” at the University of Colorado.  She is one busy lady but when I come in for my study visit, I have always felt as though she had all the time in the world for me.  When I started to forget to take the study medication and thought I should leave the study, Jacci talked me into staying with it.  I am very grateful for that!  Thankfully, the study is not over yet.

One more person deserves special mention, even though she is not a doctor:

Rachel

Rachel is a registered nurse who works with the Complex Care Program through Anthem Insurance Company as a nurse advocate for patients who have multiple health issues.  For the last 9 months or so, Rachel has called regularly to check up on me and see how I’m doing, how I’m managing with my Parkinson’s, and whether I have any questions.  I wish everyone had the opportunity to have a nurse advocate.  I knew that I could call Rachel at any time and if I had concerns, she would do her best to find answers or more resources for me so that I could find answers myself.  Not only did CU Anthem drop me from their insurance but CU dropped the Complex Care Program as part of their health coverage.  From a purely monetary aspect, I would consider this to be a huge mistake.  Often my questions to Rachel had to do with something new that would come up with my health issues and I would wonder which doctor or specialist would be the right one to handle that particular new challenge.  Her guidance saved me from going from doctor to doctor as I tried to puzzle my way through once again.

Onward!  As hard as it is to leave these doctors, I know that I will get to know my new doctors at Kaiser, too, and will find that they will each have their unique gifts to share with me.   I’m also hoping that maybe Kaiser will have a nurse advocate program. 

For now, I will end with a huge THANK YOU to Dr. Olga, Dr. Hall, Dr. Leehey, Jacci, and Rachel!  I can’t thank you enough for all that you’ve done for me!

Terri Reinhart



Gourmet

 Food is an important part of a balanced diet.
“ Fran Lebowitz”

A couple of weeks ago, we had some friends come over to see our new ducklings, goslings, and chickens.  As they were coming at dinner time, we decided to combine forces and share a meal together, giving us that much more time to visit.  It was nice.  I made a potato soup and some black pepper scones and they brought a fabulous salad.  They also brought their ten year old son, who, unbeknownst to me, is an up and coming gourmet chef.

I like to cook.  I’m a good cook, too, for the most part.  Hamburgers, chili, spaghetti, burritos… anything you can make out of a pound of ground beef, that’s my specialty.   I never had any reason to doubt the quality of my kitchen skills.  After all, my kids ate everything I made and even asked for more.   From about age 12 on, they didn’t really care what they ate as long as there was a lot of it.  Chris is also appreciative of my cooking, though he prefers to make chili himself and won’t let me touch the meatloaf.

As soon as Liam hit the kitchen, he was inspecting my soup, wanting to know exactly what I had put in it.  He also carefully supervised as his father put together the salad, offering his advice from time to time.  It was obvious that this was more than just a hungry boy. 

I started to feel a wee bit nervous.  It’s the same feeling I get when I make a meal for couple of friends of ours.  Since I know that the husband is a gourmet cook, something will inevitably go wrong with whatever I am preparing so carefully.  It’s also the feeling of panic I get when I think of making a meal for my cousin, Daniel, and his wife, Melissa.  Daniel is married to Melissa Clark, who just happens to write food columns for the New York Times.  She’s also written lots of cookbooks.  She is truly a gourmet chef. 

I’m a diner cook comparing myself to a five-star gourmet restaurant.  I got to thinking about this after our dinner with Liam.  What’s the difference between a gourmet restaurant and a diner, except that they have fabulous food cooked by chefs that have developed their talent into an art form?  Besides the obvious, however, what else is different?

After careful research, I have found two basic differences.  To explain, I will be a good teacher and use examples.  We’ll start with coffee.  At a diner, one can expect to pay no more than $1.50 for a cup of coffee.  You want milk with that?  No problem, milk is free.  You just have to pour it in yourself.  Sometimes you even get half and half in little plastic containers.   At some diners, the coffee is just there, free with your meal, as much as you can drink.  At a coffee shop (the five-star gourmet of coffee), you would never expect to pay under $3.00 for a small cup of coffee with milk.  So, the first difference is price. 

Using the coffee example again, one quickly notices the other difference.  It is easy to order coffee in a diner.  One need only nod when the waitress comes by with the coffee pot.  If you must verbalize your order, one word is enough:  coffee.  At the gourmet coffee shop, you have a list of endless options.  Do you want coffee with milk?  You have to learn the language.  Ask for a Cappuccino or a Café au Lait or a Macchiato.   You might actually want to figure out what some of these names mean, if only to know how much milk they will be adding.  You can instantly sound like a gourmet just by walking up to the counter and asking for a “Triple espresso macchiato”.   This basically means a very strong cup of coffee with milk but it sounds much more impressive.   So, the second difference is what the food is called.  Any food sounds better with a foreign name.

Since the obvious and correct way of becoming a gourmet chef takes way too long, I kept these differences in mind as I prepared to give my cooking an attitude adjustment. I cannot start charging my family for their food, therefore the quickest way to becoming a gourmet cook will be to rename my dinners.  Since we’re also on a new budget, I will be coming up with even more creative ways to use ground beef, potatoes, and, as a splurge, some chicken.  We’ll probably be eating a lot of leftovers, too.   “Leftovers” is not a proper name for a gourmet meal. I've got some work to do.

Where to start?  I went to www.babelfish.yahoo.com.  I decided that we’re going to have international gourmet meals from now on.  With what I know to be excellent translations, I came up with the following menu items.  They are particularly useful for those times when you are running low on your gourmet ingredients.  

Geschmäcke mögen Huhn

Ceci et Celui

Le Fond du Baril

Gallimaufry

Mélange Incongru

Sound good?  Come over sometime and have some dinner with us.  Afterwards we can sit down and have some Cioccolato Caldo with a generous helping of Crème d'Irlandais de Bailey.

 


Fantasy

My wholistic doctor once asked me an unusual question.  What would I do, he asked, if I had an entire day to spend any way I’d like; no restrictions, no guilt?  I would be able to take a day out of time, just for me and do anything I wanted to do.  I remember being somewhat vague in my answer.  I mean, really.  I have known this doctor’s family since he was in grade school.  I wasn’t sure how I felt about sharing something like this with him.

The question has come up for me again; however this time, I am the one asking it.  What would I do if I had an entire day for myself?  Between taking care my family and my parents, the idea of having half an hour, much less an entire day, is pure fantasy at the moment.  I definitely could use some time for me right now.  I gave it some serious thought as I drove back and forth over the last few days and came up with two options.

Option one:

On my fantasy day off, I would not drive.  I’d have a chauffeur named James or William.   I would sit in the back seat and not even have to give him directions.  He would know where I wanted to go.

As for what to do with my time, I would like:

• A long soak in a whirlpool bath or hot tub

• A massage with hot stones

• A manicure and pedicure

• To have my hair cut and styled by someone who will take one look at me and know exactly what to do to make me always look stunningly beautiful, even when I first wake up

• To buy an evening dress that does not come from the thrift shop and elegant, beautiful, comfortable shoes, without heels

After accomplishing all the above, I would have a long leisurely lunch at a nice restaurant.  Friends would stop by to chat for awhile and none of them would ask me to do anything for them.  I would eat whatever I wanted to eat without gaining weight or feeling too full.  I would drink as much tea as I’d like without having to get up to pee every half hour.  I’d have a glass of wine or two, without any effects other than feeling good and just a little relaxed.  I’d buy wine for my friends, too.

Later, I would change into my evening dress for dinner; a romantic dinner for two in a quiet restaurant.  I would be there waiting, looking stunningly beautiful, when Chris arrived, dressed in a tuxedo and looking exceptionally handsome.  We’d order dinner, something besides hamburgers or enchiladas.  We’d have champagne.  We’d take our time.

After dinner, we would go out to the patio where the band playing would not be so loud that we couldn’t hear each other speak.  We would dance.  In fact, we would dance so well that people would stop to watch us, but we wouldn’t even notice.  Then to our hotel room, which would, of course, have a balcony where we could sit outside and watch the stars come out.  We would sit close.  It wouldn’t matter if we talked or not; all we’d need is to be together.  We would enjoy each other and fall asleep in each other’s arms.

****

Option two:

I would not drive.

I would get up in the morning and fix porridge for breakfast; the kind with chopped bananas, walnuts, cinnamon, and brown sugar.  I’d put on my old jeans and t-shirt and help Chris build the chicken coop.   We’d get sweaty and dirty and we may even get blisters from pounding in nails and using the screwdriver.  I’d get to use power tools.

It wouldn’t go together perfectly but there wouldn’t be any challenges that we couldn’t handle without a little swearing, a lot of laughing, and a few extra trips to the hardware store.  We wouldn’t, and here’s the fantasy part, run out of money.  I’d get to use power tools.

We’d grab sandwiches for lunch and call out to the nice Chinese restaurant for dinner. 

We’d have dinner with our whole family.  After dinner, we’d sit close and talk quietly with our kids, sharing stories of all our past animal adventures. 

Before retiring for the night, Chris and I would go outside and walk for a bit, looking up at the street lights to see if we could catch a glimpse of a bat or an owl.  Then we would go to bed and enjoy each other and fall asleep in each other’s arms.

***

I don’t know if I’ll ever have the chance to make a fantasy day become reality.  If the chance comes, I’ll be ready.  The only problem is I’d have to choose between my two options.  I don’t know.  Option one has potential but option two might be even more tempting.

I’d get to use power tools.