Shake, Rattle and Roll

I Almost Left Parkinson's at Home

I almost left Parkinson’s at home when my husband, Tom and I vacationed in Colorado last week. Parkinson’s has always accompanied us for the past 12 years.

For six days, I didn’t write in my blog. I left my laptop at home and walked smugly by the Internet cafes that called for me at every corner. I didn’t utter a word about Parkinson’s.

 

I even forgot to bring the access controller for the deep brain stimulator. No worries, I correctly thought, as Parkinson’s is at home.

 

At breakfast, Tom told me to quiet down as I was speaking too loud. This is a first. Perhaps all those "Think Loud" voice therapy sessions were starting to pan out.

 

And then I knew with certainly that Parkinson’s was not vacationing with us when I accomplished the next challenge. After paying for our tickets for a tour at Cliff Palace in Mesa Verde National Park, an out-of-shape, overweight park ranger warned us about the risks involved in scrambling up and down the mesas. If he can do it, I can do it, I rationalized. And do it, I did. I climbed five 10-foot steep vertical ladders and scaled the red rocks on the 100-foot vertical climb to the exit. I was exhilarated.

But later at dinner that night, Parkinson’s “reared its ugly head” (Tom’s words). If I would have thought quickly enough, I would have cautioned “don’t make a mountain out of a molehill.” You must understand that I made a major mistake, an earth-shattering faux pas. I dropped my unused fork on the carpet while we were dining at an Italian restaurant. The expression on Tom’s face was negative. Was it anger, hostility or was he startled or scared? I started to explain how I dropped the fork until I realized the ridiculousness of this argument. I motioned for the young blonde waitress and asked for a replacement fork. She probably never dropped a fork in her life, but then just like magic, the fork inexplicably slipped from her hands. Her negative self-chatter probably went something like this, “How could I be so stupid?”

 

After this incident, I pondered how we all take our lives so seriously, creating mountains, not molehills. And how would Tom respond if and when I started falling just like the fork, but on a much grander scale?

 

Parkinson's will never get left behind again.

 

Why I Love Being a Rockyette

Click on photo for larger image.

 

Last September when I signed up for Broadway dance classes with the Rockyettes, I had no idea what I lie ahead.

 

The Rockyettes' last dance performance of the season was on June 13, we turned in our glittery costumes and celebrated with a good-bye lunch on June 18. Our classes resume in September, but I am down in the dumps trying to figure out how I will spend my free time. I was never good at free time and if a course was offered on “how to relax,” I definitely would fail.

 

I love being a Rockyette because…

 

I feel healthy.

While I've heard murmurings of hip and knee replacements, strokes, heart attacks, cancer and rods in backs of some of the Rockyettes, at this point, I seem to be the only one diagnosed with Parkinson’s Disease. I like their attitude. They’ve heard it all, and it’s no big deal. The show must go on regardless.

 

I feel young.

Someone in the audience, who presumably was visually impaired, asked “Who is that little girl dancing with your group?” I chuckled when I discovered she was inquiring about me. Isn’t it ironic to look like a little girl but have an old person’s disease like Parkinson's?

 

I feel tall.

In the above photo, I’m the “little girl” on the far left. With the top hats, it’s difficult to determine if I’m the shortest dancer in the group, but at 5”1” (and shrinking) it’s safe to assume that I’m not the tallest. Dancing with tall women makes me feel tall.

 

I have high performance needs and love to entertain.

The Rockyettes certainly helped with my high performance needs. With nine performances in the month of May alone, as a group we’ve had lots of opportunities to entertain.

 

I admire Ann Kennedy, the director of the Rockyettes (also the founder, producer, instructor, choreographer and costumer).

Her unfailing patience and ready smile have brought joy to our lives as well as those for whom we have danced.

 

I am blessed to be a Rockyette.

Turn It into Something Beautiful

Terri Reinhart in her work as a teacher, artist and writer, believes in laughing and learning from one’s mistakes and turning them into something beautiful. Terri has helped me take life less seriously. Join me in congratulating Terri on her new website at:  www.studiofoxhoven.squarespace.com

 

 

Message from Terri

If one were to look through the work of the first graders at our school, they might wonder at a few things they saw. Every now and then, in the middle of their words or sentences, there would be drawn a lovely flower or heart, or maybe even a cat. Why was this drawing in the middle of their sentence? It’s because they made a mistake. When you are writing with a crayon, there isn’t a way to erase a mistake. At first, many of the children become frustrated every time they “mess up” and want to tear up their paper and start over. But this is not allowed. The teacher gently instructs the children that when they make a mistake, they must turn it into something beautiful.

Sometimes I think that this is the most important lesson they learn at our school. Wouldn’t it be nice if that were a rule for all of us? What might happen if, every time we made a mistake, we turned it into something beautiful? Just think. When we say something we shouldn’t or hurt someone in any way, we would begin, out of habit, to find a way to fix it. Not by tearing it up and starting over, ignoring the fact that we blew it, but by seeing what we have done and finding a way to fix it. We’re not allowed to tear up our life and start over. Turn it into something beautiful.

I guess that is what I hope to do with my writings. I want to take all my blunders, my failings, the moments when I stumble the most, and make them beautiful. Or at the very least see the humor in my own stumbling and, if I am really lucky, make someone else laugh.

That would be beautiful. 

I'd like to thank Kate for generously allowing me to have my articles posted on her blog. 

I now have my own web page!!

Please visit me at www.studiofoxhoven.squarespace.com

 

With all good wishes,

Terri Reinhart

Senior Spellers Succeed

As I type this post on my blog, senior spellers compete in the AARP's Magazine's National Spelling Bee in Cheyenne, Wyoming about 100 miles north of Denver. This year, 49 competitors range in age from 50 to 75 and come from 24 states and 1 Canadian province.

Founded by Cheyenne AARP members in 1996 to help keep their minds sharp, the bee is open to anyone at least 50 years old. Past winners cannot compete. Unlike the Scripps National Spelling Bee for school children, the senior spellers aren't booted out until they misspell three words, and everyone pays their way to get to Cheyenne.

The day starts with a written test. The top 15 scorers progress to the final to spell words out loud.

It can’t be the money that draws these competitors. The award winner gets a paltry $500. Perhaps it’s the bragging rights and the opportunity of being on nationwide TV. But it’s more likely their love of words, the challenge and the thrill of competition that keeps them coming back.

In elementary school, spelling was my favorite subject. On our weekly spelling tests, I usually earned 100%.The nuns scored it as “minus zero” not 100%, so I wouldn’t get a big head. “Nobody is perfect,” they would insist, “except for God.”

I would have been in word-heaven if there was a college degree in spelling. However, there is not a big demand for spellers in the job market.

I loathe people who downplay the importance of good spelling. I once had a boss who could never get the homonyms “heard” and “herd” quite right. I was embarrassed for him when he repeatedly mixed them up in his emails.

I think I will click on the spelling bee’s website and obtain an application for 2009.

Related Links:

'Botryoidal' a grape bee finish for N.D. man
http://www.montanasnewsstation.com/global/story.asp?s=8492611

Catachresis by Patricia O'Hara at http://www.creativenonfiction.org/brevity/brev23/ohara_cata.htm

 

Exploding the Myth that Parkinson's Is Only a Movement Disorder

Most people are familiar with the motor symptoms of Parkinson’s Disease (PD) such as too much movement (tremor), slowness of movement (bradykinesia), stiffness of movement, or no movement (akinesia) such as in freezing.

 

However, non-motor symptoms related to PD are often not diagnosed and treated.  These include sleep difficulties, bladder and bowel problems, saliva-control and drooling, depression, anxiety, and cognition and memory problems.

 

In fact, the International PD Non-Motor Group, a multidisciplinary group of PD experts, has identified 30 possible non-motor symptoms in the PD Non-Motor Symptoms Questionnaire. You can locate this questionnaire at their website: 

http://www.pdnmg.com/tools/nms-quest.pdf

 

These PD non-motor symptoms are often not picked-up by neurologists. Many of us with PD don’t realize that they are related to the condition.

 

I am relieved that this questionnaire has been developed to help with the gap in understanding.  In fact, I’m going to complete it and bring it to my next neurology appointment.

 

Related Resource:

The following is an excellent webcast on the non-motor symptoms of PD:

Non-Motor Symptoms of Parkinson's Disease - Archived Webcast

The non-motor symptoms of Parkinson's Disease webcast features a presentation by Dr. Mandar Jog, Associate Professor at the Clinical Neurological Sciences, London Health Sciences Centre, London, Ontario, Canada.

http://events.onlinebroadcasting.com/parkinsons/062006/index.php

Dancing Out of Our Comfort Zones

Click on photo for larger image.

 

I am filled with excitement and nerves. I drive into the parking lot at the North Jeffco Community Recreation Center in Arvada, Colorado at 5:30 PM last Friday night. This is the main event of the season for the Rockyettes, a tap and Broadway dance ensemble. I am dancing tonight as a relatively new member of this group.

Earlier today, my hairdresser transformed my hair into a sassy style and put on stage makeup including the requisite red lipstick. There is something about red lipstick that encourages me to develop a different persona. I am sweating through my makeup on this hot summer afternoon.

 

I walk into the building and into the theatre where 260 chairs are set up for tonight’s performance. Fifty women dancers, mostly seniors, wait to rehearse the closing bows. Each dance group has its own timetable of when to go on stage and how to bow. The music of “Can-Can” is blaring in the background.

 

The rehearsal is over at 6:00 PM, and the doors to the public are opened. My husband, Tom drove separately. He waits in line with his two pans of homemade poppy seed coffee cake, baked from scratch by Tom himself, recipe courtesy of his late Czechoslovakian mother. This has become Tom’s signature recipe. Once people try it, they are addicted. It must be the poppy seeds.

 

My friend, Janet, calls earlier to confirm that a group of 17 people are accompanying her to tonight’s performance. I assume that the 17 are from her line dancing class. Ten other people confirm their attendance directly with me so now I am up to 27. I am stunned.

 

I am also surprised to see two men waiting in line that I knew from an accordion band that I played with several years ago. One of the men even had his accordion in tow because he was afraid that if he left the accordion in the car, the wax in the reeds would melt.

 

I proceed to the dressing room at 6:00, still astonished that so many people would choose to spend their Friday evening watching the dancing seniors. The Rockyettes performance begins precisely at 6:30 and ends exactly at 7:45. We move like clockwork, with beautifully designed costumes, different for each number. I dance in two of the Broadway dance songs.

 

When we enter the stage, I look directly into the audience. I cannot see anyone because the lights are turned down except for the stage lights, which are turned up. I see a silhouette of Tom who is snapping pictures at stage left. I dance and smile to the presumably full house, not knowing whom from those I invited are in attendance. The dancers are having fun and at that moment, everything else doesn’t matter.

 

After the finale of “Can-Can” and the closing bows, the house lights are turned on. I head off stage for the main floor to visit with friends and enjoy refreshments, including Tom’s coffee cake.

 

The biggest shock of the evening is seeing my accordion teacher and band director, Alice with her band members that I played with in my earlier Parkinson’s days. Alice conducts an accordion band every Friday night. The previous Friday, Janet (yes, the same Janet, a line dancer and accordionist who invited 17 people) informed the band that she wouldn’t be attending the following Friday because she wanted to see me dance. Alice’s and the band members immediate responses were “me too.” Alice cancelled band for the following week. In the 14 years that I have known Alice, she never cancelled band for any reason. This was a first for Alice.

 

And this was a first for me… While dancing tonight, I feel and look as though I don’t have Parkinson’s.

 

It seems like we are all dancing out of our comfort zones.

A Good Night's Sleep Is Worth a Million Dollars

Most of us with Parkinson’s are plagued with sleep disorders. Up until four nights ago, I suffered from insomnia. I was so excited about my new discovery that I posted a question to Kathrynne Holden of the Ask the Parkinson Dietician sponsored by the National Parkinson Foundation. My question and her response follows:

Hi Kathrynne,

Four nights during the past week, I have had a cup of chamomile tea one hour before bed.

I have had wonderful sleep during those four nights. Typically, because of PD, I have insomnia and fragmented sleep.

What are the benefits and risks of one cup of chamomile tea a day? Are some brands better than others?

Thanks,
Kate

Dear Kate,

 

Chamomile tea is an excellent choice, and I recommend it for those who experience insomnia. The benefits are that it soothes and relaxes, and promotes a good night's sleep. The only risk I'm aware of is that it is in the ragweed family; people allergic to ragweed could be allergic to chamomile, although so far I've never heard any reports of this.

I don't know of a particular brand that's better than others; I generally buy it in bulk and keep it in a tightly-closed container.

Best regards,
Kathrynne Holden, MS, RD

For a Parkinson Tip of the Day visit:
http://www.nutritionucanlivewith.com

 

 

http://forum.parkinson.org/forum/viewtopic.php?p=15001#15001

 

*****

 

Now if I also looked and felt like a million dollars, I'd be a wealthy woman.

 

 

Dreaming

Dreaming

By Terri Reinhart

Copyright © 2008

 

Did you ever have one of those days when you just knew you could do anything?  You feel good and confident and if anyone asks if you’d be willing to help with something, you immediately reply, “Of course I will!!” and you mean it. 

 

I must have had one of those days a while back because now I find that I’m responsible for writing the names of all of our high school graduates on their diplomas in beautiful calligraphy.  And, that’s not all.  The person who writes the names on the high school diplomas also writes the names of the 8^th graders on the certificates that they are given at Continuation.  I will get them done and I will probably even enjoy it, but there is some humor in giving a calligraphy job to a person with Parkinson’s disease.  I’d better be fully medicated when I begin this!

 

From time to time, I am pretty realistic about what I should and shouldn’t take on.  I have learned not to volunteer in a classroom all day or I will be thinking murderous thoughts by the afternoon.  That’s not good.

 

I have learned that any heavy work has to be done in short increments, like a minute and a half.  Then it’s time to rest.  I don’t say that I CAN’T do something. I just find ways to do it little by little. 

 

Then there are other times when I just dream.  I get ideas all the time.  I suspect it drives my poor husband nuts, but I can’t help myself.  I know full well that 98 % of my ideas won’t fly and I don’t expect them to.  The fun is in coming up with the ideas to begin with.

 

When I left my job, I had all sorts of plans.  I looked into a number of job possibilities and then looked into going back to school to get a degree in special education.  I researched every angle, calling the advisor at the college and figuring out how I could work half the day and go to school the other half day and get my degree in four years – somehow, without having murderous thoughts by the afternoon.

 

I decided I would build a new chicken house and raise chickens, ducks, and geese again.  I also looked into putting a walkway in our garden, building up the vegetable beds and planting roses along the fence.  I plan on having our garage completely cleaned up and organized by the end of the summer, a bread oven built in back of the garage, a deck built by my studio, and my workroom cleaned.  I also want to do volunteer work, travel, pose nude for a life drawing class, and learn to play at least one musical instrument well.  I have a wide variety of interests.  And these are just the tip of the iceberg.  I haven’t even included anything about the long list of artistic projects that I simply must do someday soon.   

 

I did accomplish one goal.  We have semi finished our little “studio” building in our back yard and it is home to a few art workshops now.  I don’t hope to make a living with my art work, I just want to open up the space and invite people to come and work and learn with me.  I enjoy creating art with other people.

 

Now I also have all sorts of advisors coming up with ideas for me.  My former colleagues would like me make crafty things for their classrooms.  One friend has been trying to convince me (unsuccessfully) of how much I would LOVE skydiving.  I have a new exercise coach who has told me that I WILL start doing Tai Chi.  He’s a big guy, from Delaware, and he’s into Martial Arts.  He’s going to be calling me regularly to make sure I’m following through, so I think I will.  Another friend feels that I should be relaxing and watching lots of movies.  He also checks up on me regularly.  And my younger son says I should go back to college, but not yet.

 

When we drive down Federal Blvd. in Denver, there is a large billboard showing a photograph of a woman receiving her college diploma.  The ad announces “The World’s Oldest College Graduate: Nora Oaks, age 95.”  My son wants me to beat that record.  He wants me to go back to college, but not before age 92.  Then after four years, I’ll have my degree at age 96.  He’s also added another idea.  “But mom,” he says, “you really should live in the dorm.” 

 

I still keep my hatchery catalog.  Maybe someday I WILL have a nice chicken house again. I will also keep my gardening books, my wood working books, and my college catalogs handy.  I plan on coming up with lots more ideas, too.  If it happens that we do have more than one lifetime on this earth, I’ll be in good shape.  I’ll have enough to keep me busy for a long time!

 

But first, I’d better get those diplomas finished.