Shake, Rattle and Roll

Colonoscopy’s Unexpected Gift

My doctor says “You are at the age where you need to be concerned about your colon care. You need to have a colonoscopy.” I grimace. “If the first colonoscopy is clear, then you won’t have to have another one for 10 years when you are 68,” she says reassuringly.

“With Parkinson’s, I don’t expect to be around in 10 years,” I state matter-of-factly. This time, she grimaces.

By the time I return home, the colonoscopy office left a voice mail indicating they were eager to schedule the procedure. I’m thinking they must not have many patients who willingly call for an appointment. I delay returning the call. The scheduler is persistent and calls me again, even though I did not return her first call.

The scheduler suggests several dates, and my responses are:
“Nope, I’ll be in New York City.”
“No, that date won’t work as I have a dance performance.”
“No, I’m flying to Kansas City for my twin nephews’ high school graduation.”

Exasperated, she says, “OK, you suggest some convenient dates.” I come up with the Tuesday after Mother’s Day.

Everyone who has had a colonoscopy tells me the same thing. “It doesn’t hurt. You’re knocked out. Don’t worry about it.” Finally, the truth comes out about the preparations being the most difficult part of the entire procedure. The medical staff also reassures me that “the patients say that the prep is the most difficult part of the procedure,” as the staff knows better than getting anywhere near a colonoscope. I was scared of the preparation, more than the procedure itself.

For the procedure on Tuesday, the preparation to get your system cleaned out is the following:

• Last meal of breakfast on Monday with no real food until lunch on Tuesday
• No medication from noon on Monday otherwise the meds might clog the colonoscope
• Only clear liquids (and this does not include California Chardonnay) from noon on Monday until 6 AM on Tuesday
• No liquids of any kind after 6 AM on Tuesday
• At 6 PM on Monday, begin downing at the rate of one glass every 10 minutes, nine glasses filled with 8-ounces of an atomic-powered laxative; totaling 72 ounces
• Set the alarm for 4 AM on Tuesday and drink four more 8-ounce glasses, totaling 32 ounces, before 6 AM
• The instructions stated: “Bowel movements start about an hour after the first glass and last for 6-8 hours"
• “You may feel bloated, chilled or nauseated.”
• “If you start vomiting, stop drinking the solution for 30 minutes then restart.”
• Warnings that if you don’t comply with any of the above, then the procedure may need to be rescheduled

Being a compliant patient, I follow all the above. In fact, it is noted in my chart that “the quality of the prep was excellent.” Being compliant resulted in me feeling like I had food poisoning, I was dehydrated, and I got very little sleep that night. Also without Parkinson’s meds for nearly 24 hours, I was slow and shaky.

I wake at 4 AM on Tuesday to discover that it’s a cold rainy day in metro Denver. It’s a good day to stay inside and have a colonoscopy, I tell myself.

I discover that Cindy, the Medtronic representative for deep brain stimulation, also needs to be at the procedure to zero out the stimulator before the colonoscopy and then turn it back to the correct settings afterward. Cindy arrived at the hospital right on time at 7:30 AM after driving 50 miles in rush-hour traffic on rain-soaked freeways.

Right before I change into the hospital night gown for the procedure, Cindy turns off the stimulator by putting the control device on top of my chest. The pre-op staff look inquisitive, and we hear mumblings of "what are they doing?". We say that I have an implanted deep brain stimulator for Parkinson’s Disease, that it’s like a pacemaker to the brain. They scratch their heads as though we are speaking a foreign language.

I am in a sedated fog when Cindy returns after the procedure to turn on the stimulator to the same settings of my last programming session of March 4. I think these settings are close to optimal for me right now.

When I visited New York a couple of weeks ago, the security checks must have inadvertently triggered a change in the settings. Since New York, my voice has been devastated (see Giving a Voice to Parkinson's).

However, when I am discharged from the hospital after the colonoscopy, I notice that my former strong voice returns. With a return to the settings of March 4, getting my voice back is colonoscopy’s unexpected gift.

By the way, the results of the colonoscopy indicated no polyps and no cancer. Yipee!!

Choices, Choices

Choices, Choices…
By Terri Reinhart
Copyright © 2008

Years ago, while teaching kindergarten, I caught a couple of the boys eating iris blossoms on the playground. A frantic call was made to the Poison Control Center and I found out that iris blossoms were not on the list of dangerously poisonous plants. I was asked to watch them, however, as there really wasn’t much information listed about the effects of consuming this particular flower. Not many people would consider doing this. In fact, probably the only people who have ever experimented with the wild notion of eating irises would be five year old boys who wanted to make purple spit. I passed that bit of information on to Poison Control and for the next few minutes, I couldn’t make out anything they said. Maybe it was a bad connection.

I thought of this story not long ago when I was prescribed a new medication. Among the side effects was that it “turns all your bodily fluids orange”. COOL! If only I had that medicine all those years ago, I could have been the coolest kindergarten teacher on the planet – the one with orange spit.

My doctor is extremely good at explaining medications and their side effects. This is good because my body tends to be just sensitive enough that if there are side effects, I’ll have them. It’s nice to have at least a little bit of warning. And if they are not explained to me in a healthy way, I tend to freak out. That happened a while back with a (now former) nurse practitioner who prescribed a drug that, when I read the literature, I found had a possible side effect of “falling asleep without warning while doing routine daily activities, such as driving.” As I was then driving 17 miles on the freeway each way to work, I called and talked with the nurse practitioner. She tried to reassure me by saying, “Don’t worry, if it happens once, we’ll take you off of it.” I told her that if it happened once, it probably wouldn’t be an issue. After that, I went through my neurologist whenever I needed to ask about medications.

My neurologist, by the way, is a lovely woman who listens to me and respects me as a person. She is obviously very intelligent, articulate, and I am sure she is one of the top doctors in her field and deserves a raise. If I have DBS brain surgery in the future, she’s the one I will trust. She also reads these articles. Did I mention how intelligent she is?

So, at my last visit, I was prescribed a couple of new medications and my doctor very carefully went over all the side effects with me. “Oh, and it can cause compulsive behaviors, so if you experience anything like that, please let me know and we’ll adjust your dose.” She went on to say that while it sounds humorous, she knew of patients who had spent all of their savings on shopping sprees while on this drug. The compulsive behaviors could include compulsive gambling, shopping, or even sexual behavior. She also said that some people try to direct this compulsiveness into a particular area, such as crafts. They might work on their crafts to the point where they forget to feed their family.

Oh boy.

Of course, if that last one is how this manifests with me, I’m okay. My family wouldn’t notice. I’ve been doing that for years. But it made me wonder. Could I possibly direct compulsive behavior in a way that it would be beneficial for me? What would I choose?

I’m afraid that gambling and shopping are out. We definitely can’t afford that. I will give all my credit cards to my husband and also have him change the passwords on my internet accounts so I cannot click and spend.

Compulsive sexual behavior is also out. That would be way too complicated and way too much work.

My kids would probably prefer that I become a compulsive baker and spend hours every day baking cookies and cakes. The only problem is that compulsive baking would lead to compulsive eating which would ultimately lead to the need for buying bigger clothes which would lead to compulsive shopping which is out already. Sorry kids.

My husband might suggest that I become compulsive about cleaning. This actually sounds good and if I could pull it off, that might be the way to go. I’m not sure that we can direct compulsive behaviors to something that is totally against our nature, but it’s worth a try. If nothing else, I would be busy for months. The thought that someday MY house could be sparkling clean and neat with no piles of papers anywhere and nothing out of place…? I’m sorry. I’m just having a hard time even imagining that one.

Perhaps I’ll try compulsive gardening. It wouldn’t matter how many vegetables we eat and that would save us money in the long run. And I would love to see neat rows of plants with no weeds growing in the pathways. I would also have our lawn and flower beds perfectly manicured. This sounds good. I’ll have to let you know how it goes.

Oh, and we have a large bed of iris that desperately needs attention, too.

Are You Worried You Might Have Parkinnson's?

When I was volunteering at a local health fair a couple of years ago, people seemed reluctant to approach the booth with information about Parkinson's (the same way that they avoided the booth about alcoholism and drug addiction). No one wants to consider that he, she or a loved one might have a chronic, progressive, incurable disease like Parkinson's. However, I discovered the following questionnaire which helps educate people about Parkinson's in a non-threatening way.

Parkinson’s Disease Questionnaire from the Parkinson Association of the Rockies

If you shake or tremor and you want to learn whether you have Parkinson’s Disease and not Essential Tremor, please answer the following questions. If you don’t shake or tremor but think you may have Parkinson’s Disease, you may also answer this questionnaire. Note - 30% of Parkinson patients do not shake or tremor, or rarely shake and tremor. If you don’t shake or tremor but you have a relative who has Parkinson’s Disease, you may also wish to complete this questionnaire.

Questions:

1. Do you have trouble arising from a chair? О Yes О No

2. Has your handwriting become smaller? О Yes О No

3. Do people say your voice has become softer? О Yes О No

4. Is your balance poor? О Yes О No

5. Do your feet ever seem to get stuck to the floor? О Yes О No

6. Do people say your face always seems sad? О Yes О No

7. Do your hands or legs shake or tremor? О Yes О No

8. Do you have difficulty buttoning buttons? О Yes О No

9. Do you shuffle your feet when you walk? О Yes О No

10. Do you take tiny steps when you walk? О Yes О No

11. Has anyone asked if you have Parkinson’s Disease? О Yes О No

12. Have you ever taken L-dopa, levodopa, Sinemet or Atamet? О Yes О No

Scoring:

Add up all of your “Yes” answers.

1 yes = 8% 7 yes = 58%
2 yes = 16% 8 yes = 66%
3 yes = 25% 9 yes = 75%
4 yes = 33% 10 yes = 83%
5 yes = 41% 11 yes = 91%
6 yes = 50% 12 yes = 100%

Score: Interpretation:

0 – 50% Low possibility of Parkinson’s Disease

51-75% Moderate possibility of Parkinson’s Disease

76-100% High possibility of Parkinson’s Disease

Without seeing you and examining you, it cannot be determined whether your shaking or tremor could be related to Essential Tremor or Parkinson’s Disease. This can only be determined by your physician. You must discuss the symptoms that you are experiencing with your physician.

Giving a Voice to Parkinson’s

I wondered what the wife of the Parkinson’s group member was thinking as she strained to hear our devastated voices. She attended the Parkinson’s Disease support group on behalf of her husband who was getting cold feet while being evaluated as a Deep Brain Stimulation (DBS) candidate. I was relieved he did not attend because his cold feet might have turned to ice at the meeting.

While I didn't know what she was thinking, I was pondering the question of "How is it that so many of us who have had DBS, have experienced major voice and speech problems?" Our voices are soft, slow and slurred. We stutter and hesitate as we struggle to convert our thoughts into words. While as a group we are intelligent and highly educated, we must sound inarticulate to outsiders.

Not only has Parkinson’s affected my voice, but also DBS and subsequent programming have impacted my voice negatively. Even after 20 sessions of Lee Silverman Voice Treatment (LSVT) since DBS, my voice still has its “on” and “off” moments. Sometimes following the LSVT’s mantra of “thinking loud, clear, and big” is just not enough.

For example, on my recent weekend trip to New York City, I had five full body pat-downs because of the pacemaker to my brain. I quickly became aware of the high security at the airport in Denver, Empire State Building, United Nations Building, Statute of Liberty, and the airport at LaGuardia. My speech became garbled after that trip, possibly because my DBS settings shifted or perhaps because of the stress of having five full body pat-downs.

Meanwhile, at the end of the meeting, the caregiving wife asked for emails from those who experienced benefits from DBS. I could imagine her carefully scrutinizing the incoming emails. “Nothing too scary,” she emphasized, as she stressed communicating by “email, not phone.” She must have been worried about her husband’s cold feet not proceeding down the DBS path.

May Milestones

“My path has not been determined. I shall have more experiences and pass many more milestones.”
Agnetha Faltskog

Significant personal milestones in my adulthood have occurred in May. These dates in May are forever branded in my brain:

May 19, 1972: Obtained my Master’s degree at the University of Wisconsin in Milwaukee

May 23, 1972: Immigrated to Canada

May 29, 1972: Began my career in Windsor, Ontario

May 11, 1974: Got married in Milwaukee, Wisconsin

May 8, 1996: Diagnosed with Parkinson’s Disease in Westminster, Colorado
See The Answer

May 4, 2005: Had Deep Brain Stimulation (DBS) surgery in Sacramento, California
See Uneventful Brain Surgery

May 5, 2006: After a year of programming sessions, the programmers finally admitted that “we can’t help you with this” or as I interpreted it, "this is as good as it gets."
See Get with the Program

May 31, 2006: Ended my career in Denver, Colorado because of Parkinson’s disability
See PD Went to Work

and It’s Not Working

May 14, 2007: Began DBS reprogramming sessions with Dr. Olga
See Get with the Reprogramming

Each event has its own story. But May 4, 2008 being the third anniversary of my DBS surgery, I’d like to reflect on the question that people eventually ask: “Would you have DBS over again?” Up until about a year ago, the answer would have been a definite “no.” In fact, I was the only person that I knew who wouldn’t do it over again. I longed for the positive benefits of DBS. I hated having the DBS system inside me and went to a neurosurgeon and asked for it to be removed. Shocked by my request, he referred me to the local expert on DBS programming, Dr. Olga.

Dr. Olga has a passion and knack for DBS programming. This DBS Wizard doesn't give up on her patients. Her compassion and competence has been inspiring.

Now my answer to the “Would you do it again?” question is “yes” providing a skilled DBS programmer is close at hand.

I look forward to many milestones to come.

Baby Stepping It All the Way

I am overwhelmed by the 10,000 persons with Parkinson’s (PD) and their supporters participating in the PD Unity Walk last Saturday, April 26, 2008, at Central Park in New York City. Outside the park, New York is bustling, and people move fast. Inside the park at the walk, people take baby steps.

I long for the days of old, running 10 milers in the Canadian Rockies and 12 kilometers races at the Bay to Breakers in San Francisco and Bloomsday in Spokane. I reminisce about the long bike rides that Tom and I enjoyed in California, Vermont and Wisconsin.

I am confined, restless and eager to get moving. I feel guilty that I can so easily walk, while others with PD have major mobility and balance problems. I fantasize flying above the Baby-Steppers in Central Park but instead I become one of them, baby stepping it all the way. But at least we are out there taking steps, albeit slow ones.

Julius Erving said, “To be great we need to win games we aren't supposed to win.” We take baby steps to win the biggest game of our lives - conquering PD.

Miracle Cures

Miracle Cures
By Terri Reinhart
Copyright © 2008

I was shopping the other day at my favorite natural foods store. We do our best to eat good healthy natural food, of course, all the time. And with the exception of the occasional burger from the fast food restaurant, milkshakes, anything that is chocolate and mmmmm… those jalapeno bites from Arby’s with the red sauce that looks like transmission fluid, I do pretty well. As with everything in life, it is nice to have a balance.

I meandered down one aisle, looking closely at everything and feeling pretty good. I was doing the good mom thing and buying natural organic food. Then I went around a corner and was immediately accosted by an older woman (okay, she was maybe a little bit older than me) offering me samples. Would I like a sample? I asked what the samples were but before she answered, she looked at me closely and asked, “Are you in pain?”

“Uh, no, I’m just moving slowly.”

“But are you in pain?”

Okay, now I figure it’s easier to just explain it right out than to risk any more inquiries. “No, I’m not in pain. I have Parkinson’s disease. I just move slowly.” How could I have known what would happen next?

“Did you know that this is the number one diet supplement for Parkinson’s?” She began. And she went on and on about her product, about which she was obviously very passionate. I learned an awful lot! And after several minutes I was quite ready to believe that it stops pain, cures the common cold, helps hair to grow, makes our bones strong, stops the moodiness of menopause, and helps prevent global warming. She had me hooked. It is fun to listen to anyone who is enthusiastic but a fanatic can be irresistible! It’s very possible that I would have even bought some of her miracle supplement, except for one thing. She was just a little too confident and suggested that I try the sample, walk around the store for ten minutes and then come back to let her know how much better I felt. I had the picture in my mind of the crippled child throwing away his crutches and wondered if I’d rip off my leg braces and dance through the aisles of the store. But no, ten minutes after taking the supplement, I felt no different than I had before. Well, that’s not entirely true. My legs were aching and my speed was approaching that of a geriatric turtle. I was too embarrassed to go back.

Once home, the more reasonable parts of my brain kicked in. How many miracle supplements, remedies, and therapies had I been presented with in the last ten years? I’m actually not knocking them at all. I believe very strongly in natural, wholistic medicine and have often consulted with doctors who practice wholistic medicine. There are so many different products out there that I am more than happy to allow my doctor do the recommending for me. He’s also an M.D. so I know he’ll understand my prescription medicines and how things might interact, too. Letting him be the expert makes less work for me and is ultimately less expensive. As with any medicines, what works for one person doesn’t always work for others. Even at best, it can take time to find what’s right. When we do find something that works well for us, it’s tempting for us to become the fanatical salesperson telling about our wonderful miracle cure-all.

Here are my magic remedies:

1. Hot baths. I am a firm believer that there is nothing that isn’t helped by a hot bath. If need be, you can even take three or four in a day. The only side effect is wrinkly fingers and toes.

2. Naps. I’m up to two a day. When my body says go to sleep, I say “Sure, why not.”

3. P.G. Wodehouse. Having my husband read passages out of Wodehouse’s novels can be nearly as good as the meds. But it has to be my husband reading them! It’s not just the words, you see. It’s his presentation. As I said before, an enthusiast is fun to listen to, a fanatic is irresistible!

4. Chocolate. This is best when shared with my 14 year old daughter.

5. Late conversations with my son. And it doesn’t matter what we are talking about.

6. Going out to the coffee shop with my good friend. I’m not going to divulge his name. I don’t want him to be suddenly deluged with invitations for coffee. He’s hyper enough as it is. But he makes me laugh and even if I forget to take my meds, I will be symptom free for another couple of hours.

7. Diet pop. I know, those who promote natural healthy foods will say that diet pop is poison. But in reasonable doses and shared with a dear friend, there is therapeutic value.

8. And last but not least, those jalapeno bites from Arby’s. Don't forget the transmisson fluid.

I’ll tell you what. Try one of these remedies. Walk around for ten minutes and then come back and let me know how much better you feel.

Davis Phinney Celebrates His Biggest Victory through DBS

Check out Sports Illustrated's story by Austin Murphy entitled:

Davis Phinney Celebrates His Biggest Win (so far) at:
http://www.sportsillustrated.com/2008/writers/austin_murphy/04/28/phinney/index.html

Related Links:

Phinney hits last step of Parkinson's surgical relief plan
The Associated Press
Published: April 26, 2008
http://www.iht.com/articles/ap/2008/04/25/sports/CYC-Phinney-Surgery.php

Message from the Folks at the Parkinson's Unity Walk

The rain cleared away and the sun came up just in time to welcome thousands of people into Central Park for the 14th Parkinson's Unity Walk last Saturday, April 26. The weather was beautiful all day, and the experience was more than humbling for everyone there!

As many of you know, we webcast this event Live from Central Park! Beginning in 2-3 weeks, the webcast will be available on our website to view all year. You will hear from walkers, sponsors, PD organizations, and will get to see the entire program! So, if you were unable to participate in the Walk, or would like to be a part of it again, please check out our website, www.unitywalk.org, to enjoy the webcast all year long!

One man tells his Parkinson's Fight, and Efforts to make the disease history. He hopes to step closer to a cure by helping us spread awareness. Jerry Tully, a producer for ABC news magazines, joined us on Saturday at the Walk, and put together this great article:

Stepping Closer to a Parkinson's Cure
http://abcnews.go.com/Health/MindMoodNews/story?id=4728498&page=1

Please continue to help us as we continue to find a cause and cure for Parkinson's disease. Share this article with your family and friends, and remember, donations for the 2008 Parkinson's Unity Walk will be accepted until June 1, 2008.

From everyone here at the Parkinson's Unity Walk, we are all in this together.

All the Best,

Stacie Mishler
Event Director
Parkinson's Unity Walk
866-789-9255 (866-PUW-WALK)
staciem@unitywalk.org

Maya Pinpoints My Perspective on Parkinson’s

Maya Ellis is a 12 year old middle school student in Boulder, Colorado. She chose to study Parkinson’s Disease for her class project because her great uncle has it, and she wanted to know more about it. In her free time, she studies for her Bat Mitzvah, plays soccer and the piano.

1. What is it like to live with Parkinson’s disease (PD)?

Life with PD is unpredictable. I never know for sure when and if the medication will be working. Life with PD can be embarrassing, particularly with difficulty walking and talking. Feelings of isolation and being different often set in.

2. Can PD be misdiagnosed?

PD is frequently misdiagnosed. My neurologist had to rule out Essential Tremor, brain tumor, Lou Gehrig’s disease and Wilson’s disease before considering PD. A Movement Disorder Specialist (MDS) is a specialist within neurology who is frequently called upon to diagnose PD.

3. What treatments are there for PD?

The traditional treatments for PD are combinations of medications and/or surgery. The gold standard of treatment is the medication, Sinemet. However, over time Sinemet can cause dyskinesia (e.g., those involuntary movements of Michael J. Fox). The most effective surgical treatment to date is Deep Brain Stimulation (DBS). View a clip of Deborah Fryer’s award-winning film, Shaken: Journey into the Mind of a Parkinson’s Patient, at:
http://www.youtube.com/watch?v=QFtgV1vqwiE

I and many others with PD often experience some temporary relief of symptoms through yoga, dance and other forms of exercise as well as massage and acupuncture.

4. What are the side effects of the treatment?

The side effects of taking Sinemet over time include dyskinesia.

The possible adverse effects of DBS include:
Difficulties with speech
Confusion and other cognitive problems
Infection
Weight gain

See more about adverse effects of DBS at:
http://katekelsall.typepad.com/my_weblog/2008/03/adverse-events.html

5. What cause the lack of dopamine?

No one knows for sure, but it’s probably a combination of genetic and environmental factors.

6. How long does the average person live after they are diagnosed?

This is a topic that most of us with PD don’t want to talk or think about. I’ve seen people in their eighties who die several years after being diagnosed with PD (e.g., my mother-in-law) while I know three persons living with PD who were diagnosed 33 years ago.

For more information, see:

http://katekelsall.typepad.com/my_weblog/2007/10/stages-and-prog.html

7. Are there any common misperceptions about PD?

The primary misperceptions about PD include:

• It is an old person’s disease (when 15% of those with PD were diagnosed when they are less than 50-year old). I know a 21-year old with PD.

• The prevalence of PD (it is estimated that 1.5 million people in the US and 6 million people worldwide have PD).

8. What are the most important things to know about PD?

• The primary four symptoms include: tremor, stiffness of muscles, slowness of movement and impaired balance.

• The onset of PD, which is typically subtle and gradual, is most often unilateral, with tremors the most common symptom. However, many people with PD have no tremor.

• There is currently no cure. It is chronic and progressive.

• The symptoms of PD are different in each individual.

• PD will affect you, your family or friends in your lifetime.

9. What interested you in studying PD?

I wouldn’t be studying PD if I personally didn’t have it.

10. Other facts about PD?

• At time of diagnosis of PD, 80% of dopamine cells are damaged, dead or degenerated.

• April is National PD Awareness Month. Please help by spreading the word.

Late Bloomer

Late Bloomer
By Terri Reinhart
Copyright © 2008

I had a disturbing wake-up call today. I went out to do my gardening. I was determined to get the potatoes planted earlier this year to take as much advantage of our growing season as possible. Over the last two years, gardening has been a wonderful therapy for me. I would go out and pick weeds for an hour or more. Granted, if I did heavier work, like shoveling, raking, cutting up the old branches with the saw and bundling them up, or something like that, I knew that I would be worthless later in the day. But, I figured, I could either do the work and feel useless later in the day or not do the work and feel useless all day. I wasn’t going to stop.

I’m still not going to stop gardening, however, it was disturbing to find that I could only turn over about five shovelfuls of soil before having to sit down and rest. After a few minutes, I forced myself to continue on with the work, leaning on my shovel as I walked over to the potatoes. I finished my work between rest stops and, though it took much more time and effort than it ever had before, I was still pleased that I could do it myself. I’m not so useless after all.

It did make me think of the future, though, something I try not to do too much. If gardening is this much harder today, what will it be like next spring? Damn.

At least I can swear about it now!

Through no fault of my own, I didn’t learn how to swear until much later in life. It’s not that I have anything against swearing, it was just not something I was exposed to while I was growing up and when I was, it was like being exposed to a foreign language. I just didn’t get it.

I am sure that at some point my parents knew how to swear. My father was in the Navy during WWII on a small ship in the North Pacific. Swearing certainly must have been a requirement. My mother grew up on a farm. The youngest of ten children, she had five older brothers. What would the chances be of her NOT hearing the more colorful words in our language? But regardless of this, I don’t think I ever heard a swear word uttered in our house. I certainly didn’t learn to swear at St. Anthony’s Catholic school, where I spent my first five years of elementary school.

This can be a bit of a handicap if you find yourself in a sticky situation. Granted, if you are around small children, corporate business associates, clergy (including Catholic school nuns), your grandmother, or anyone else who might be mortally offended by the slightest off color language, you would be prudent to stick with gosh darn golly gee whiz fiddlesticks, and such. But I am alone in my garden, leaning on my shovel, not a young child in sight. Considering how young we were when we married and started our family, and that I worked in early childhood education for most of my adult life, this is the first time I’ve actually had the freedom to not worry about what I say. And I can tell you, gosh darn golly gee whiz fiddlesticks just doesn’t cut it when I allow myself to look too far into my future.

I let loose with a string of obscenities that would have made my male friends proud.

It is interesting to note that, while being an early childhood education teacher prevented me from using certain language, it’s not as if I didn’t hear it. I think I even learned a few new words from the children. Most of them are very innocent, however, and when a young child came to me on the play yard and tattled that another child had said the “F” word to him, I was suddenly wary. I turned to the child and said, “Which F word did he say?” The child looked at me cautiously and whispered in his quietest voice, “He said shut up.” Mr. Baker, who teaches woodwork to the grade school children, lets the students know that he doesn’t tolerate foul language. And the foulest words, in his opinion, are the words, “I can’t”.

Back in the garden, it was strangely uplifting to be able to get angry and yell, not worrying what I said or who might hear me. The earthworms didn’t seem to mind at all and our rabbits didn’t even blush. One of the foxes turned and looked at me suspiciously but I’m used to that. He does it all the time whether I am swearing or singing. Come to think of it, he really looks at me suspiciously when I sing. I’m not that bad, am I?

I don’t know how things will be for me in a year. The only certainty is that it won’t become easier with time. But I still plan to garden. I’m not going to PLAN on what I will NOT be able to do. It’s inevitable that I will look into the future from time to time. It’s not the wisest thing to do but I know that it’s only natural. At those times, I will need to arm myself with all my life coping skills. Swearing is required.

The only foul words I don’t want to ever use are, “I can’t.”

Terri Reinhart is a Denver, Colorado writer. This essay is from her book “I Meant To Do That” and Other Life Coping Skills.

Dancing with Parkinson's Continues to be a Hot Topic

Photo of Kate Kelsall taken by Linda Crist
Costume by Ann Kennedy
Click on photo for larger image

Dancing with Parkinson's continues to be a hot topic. On CBS Evening News on April 15, Katie Couric did a segment featuring Pamela Quinn and dancing with Parkinson's.

See link:

Dancer Stays on Her Toes - Despite Disease
CBS Evening News, April 15, 2008
http://www.cbsnews.com/stories/2008/04/15/eveningnews/main4018728.shtml

Also, Pamela Quinn wrote an article in Dance Magazine in December 2007. See link:

Moving Through Parkinson's
By Pamela Quinn
Dance Magazine, December 2007
http://www.dancemagazine.com/issues/December-2007/Moving-Through-Parkinsons

Related Stories:

Rocking with the Rockyettes
http://katekelsall.typepad.com/my_weblog/2008/03/rocking-with-th.html

Dancing with Parkinson's
http://katekelsall.typepad.com/my_weblog/2008/02/dancing-with-pa.html

In Search of Meaning

In Search of Meaning
By Tom Kelsall
Copyright © 2008

What do a 45-year-old former journalist, a 50-year-old former urban planner, a 53-year old former lawyer, a 47-year-old former technician and a 58-year-old former volunteer coordinator have in common? After 10-15 years of enduring young onset Parkinson’s Disease (PD), these individuals were forced to give up their hard-earned careers, and their dreams of the good life were shot down early.

I am currently eligible for retirement. I can choose to retire when the time is right. PD gives a person no choice. The disease is always in control. There is no right time. I could go on to other jobs in my profession, do different work altogether, do volunteer work or just relax and have fun. PD puts people on disability and shuts down the work world for them forever. Surviving becomes a priority for most PD patients, not working, volunteering or having fun.

My own career has spanned 34 years and continues to energize me. My work has given me a sense of deep satisfaction, enjoyment and a sense of accomplishment in giving back to the community. An employee is rewarded for many years of work and commitment, while disability pays those living with PD not to work. If I had given up my career 15-20 years ago, I would not have felt the same – perhaps less complete and less satisfied in retrospect. A fulfilling career can leave a person feeling very satisfied and victorious. I am blessed that I can still choose my own course in life and not have PD dictate it for me.

Succumbing to PD is equivalent to ending a dream early, leaving a person feeling unfulfilled and defeated. I often wonder about how people living with PD maintain their dignity and self-respect without meaningful employment. I admire their struggle to find meaning and their refusal to accept defeat.

“I Meant To Do That” and Other Life Coping Skills

“I Meant To Do That” and Other Life Coping Skills
By Terri Reinhart
Copyright © 2008

I’ve been quite proud of myself lately. I’m pleased with how I’m handling life and all its ups and downs. I have a good attitude, I tell myself. I don’t wallow in self pity, I try to look at the positives, and I laugh a lot. With family and friends like mine, I truly have no excuse for doing anything else. When life hands me a lemon, I make lemonade and all that stuff. So if I am so good at handling life and all its bumps and bruises, it stands to reason that others might be interested in how I accomplish this monumental task. “How do you stay so positive?” one might ask.

I think the answer is that I love life and everything in it! I try to enjoy every day and accept the bad with the good with grace and good humor. I always have good days. I love everything about this world -except lima beans. And waiting in line at the bank, or… or DRIVING 12 MILES TO THE DOCTOR'S OFFICE TO FIND OUT THAT THEY HAD CANCELLED MY APPOINTMENT! Geez, I hate that! Man…and then having to drive straight to school and hang out till my daughter was ready to come home because there really wasn’t enough time to drive back across town to our house, and not wanting to see anyone on the way because I was just so pissed off that I knew I’d burst into tears if I even looked at anyone.

I just had an awful day. Horrible and nasty from start to finish. Okay, well, nobody died and nothing caught on fire. The kids are safe and the sun still rose this morning. AND I DON’T EVEN CARE!! MY DAY WAS AWFUL, DAMMIT!

I handled everything in my usual calm, cheerful way.

After my missed appointment, I drove to the school, determined that I would make the most of the day by working on my wooden spoon in the woodwork room. The teacher is gracious enough to allow me the time and materials to do some simple projects. I think he wants the students to see just how much THEY know in comparison. I think it works. On my way, I did see one friend. I wasn’t really in shape to be seen by normal human beings, but this being a good friend, he didn’t take one look at me and run in the other direction. He calmly listened to my rant about my day and then looked at me suspiciously, “You’re pissed off at someone so you’re going to make a wooden spoon. Not something I’d think of, myself.”

My woodworking was cut short as I realized that I had forgotten to bring my medication and I began to have a Parkinson's moment. My left hand was now curling into my chest, my right side was collapsing on me over and over, and my right arm (with carving knife in hand) thought it would be best to fly upwards each time I collapsed, in a feeble attempt to help me maintain my balance. Knowing that this "moment" would last till I got home and took my meds, I felt it would be safer to put the knife down and quietly back out of the room.

We arrived home finally, and I listened to my phone messages. Our phone doesn’t beep or blink or do any of those annoying things that tell you that there’s a message waiting. And there it was: the message from my doctor that my appointment had been cancelled. They had called promptly at 8:30 am, while I was taking my daughter to school. Now, the only one I could be pissed off with was me. It didn’t help me regain my humor.

I made it through the evening. We had leftovers for dinner and I decided that my daughter would have to deal with her homework on her own. I secluded myself in my workroom and began to sew my books together. After I finished the third book, I started to feel better. At least I had accomplished something in my day. And when the green thread broke before I was finished sewing and I couldn’t find any color besides pink to finish, I told myself, “I meant to do that.”

That’s what the 6 year old boys always say. After spending 18 years teaching kindergarten, I know it’s always the same. They do something totally insane, like climb to the top of the swing set and then jump down. No matter how they land SOMETHING is going to hurt. With eyes watering and jaw set, they rub their knees, get up slowly, cradle their broken arm, look me in the eye and say, “I meant to do that.” There was something magical about this. Somehow, it made everything okay. This is what they WANTED to do and if something got a little hurt in the process, well, those things happened. Rub the knees, get up, sniffle a bit and run to play. (Unless their arm is really broken.)

Tomorrow I will go back to the doctor for my appointment. And I will remember to check my messages. I will stay away from lima beans and I won’t go to the bank. And if by chance, they cancel my doctor’s appointment and I don’t get the message, I will drive out there anyway, give everyone my greetings and visit the new thrift store that opened up across the street. And if anyone asks, I’ll just look them in the eye and say, “I meant to do that."

See Terri's other story, Bumping into Life.

"One Half-Hour Later in Newfoundland"

When I lived in Canada from 1972 to 1986, I always chuckled when I heard the phrase on television “one half-hour later in Newfoundland.”

The Canadian Broadcasting Corporation tries to broadcast shows nationally at the same time (a movie will play at eight p.m. everywhere in Canada), although this is not always possible. It has never succeeded in doing so for Newfoundland, however, and hence every advertisement for a nationally broadcast show must end with the catch-phrase "one half-hour later in Newfoundland."

Newfoundland has a time zone one half-hour out of sync with the rest of Canada, and most of the rest of the world. Being on Parkinson’s (PD) time is like being on Newfoundland time – out of sync with the rest of the world.

Everything is slower with my body on PD time. Getting out of bed, taking a shower, putting on my clothes and make-up, eating, brushing my teeth, walking, talking, and even thinking sometimes move at a snail’s pace.

I used to pride myself on being a prompt and efficient person. No stopping and smelling the roses for me during my pre-PD days. Brian, a colleague, once said to me, “Kate, you’re such an instant person,” and I thought he was paying me a compliment. And last year when I attended my 40th high school reunion, former classmates inquired if my flying fingers still typed 99 wpm on a Selectric typewriter like I did in 1967.

The clichéd, tired and overused joke in Canada is that "the world will end at midnight - 12:30 in Newfoundland." Despite what the docs say that “you won’t die from PD only with it,” this is the one race in my life where I will finish early.

I’ve always been competitive, but this is ridiculous.

Related Link about Newfoundland Time:

http://wwp.greenwichmeantime.com/time-zone/north-america/canada/newfoundland/