Shake, Rattle and Roll

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

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.

“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.

Bumping into Life

Terri Reinhart, age 50, has been married to a terrific husband for nearly 30 years. They have two sons, one daughter, and a lovely daughter-in-law. She worked in early childhood education for 18 years before it became too physically demanding for her. Terri is currently attempting to make a living by giving art classes and workshops to adults and by selling some of her own artwork. She also volunteers once a week teaching art to developmentally disabled adults.

After having had a number of people suggest a multitude of natural remedies guaranteed to "cure" her Parkinson's, and giving her too much advice, Terri wrote the following story in October 2007. She shared this with her family and close friends, and they encouraged her to reveal it with others.

Thanks, Terri, for disclosing your inspirational story to the readers of Shake, Rattle and Roll.

Bumping into Life
By Terri Reinhart
Copyright © 2008

When I was diagnosed with Parkinson's disease in 2006, I had to face the fact that my future was uncertain. But, then again, everyone's future is uncertain. I mean, it is uncharted territory, after all. We haven't been there, yet. There isn't anyone who can say with certainty what they will be doing a year from now. We like to think that we have control over our lives but we really don't have as much control as we think we should. I learned that lesson every time I was pregnant. When it was time for the baby to come, it was going to come whether I was ready or not. I remember when our first son was born. I was so excited to be in labor, I could hardly contain myself! Our first child was about to be born, I was going to be a real mom, and everything was going to be wonderful and we would live happily ever after!

Then the baby came and HE decided when I was going to sleep and when I was going to wake up. He also decided (by being such a hungry kid) how often I was going to eat. He had preferences, too, about which foods I ate and would respond with several hours of colic if I ate something that he didn't like. Control over my own life? Hah!

When I found I was in labor with our second son, my thoughts were a bit different. How could I be in labor? This baby wasn't supposed to come for another THREE WEEKS! I needed those three weeks. I didn't have anything ready. Couldn't I go home and come back in a few days? Nope. Sorry. The body has taken over. You no longer have any control over it. And when I finally did get to go home, there were two little beings telling me when I could eat and when I could sleep and otherwise demanding my attention and bossing me around.

I did finally learn how to balance caring for my family and having some time for myself. Occasionally, I even saw my husband when we weren't just passing each other in the kitchen. He graciously introduced himself to me and reminded me that he was the one who was snoring in bed when I came in at night. By the time our sons were 9 and 11, we must have been able to see each other a little more often because it was just about then that we discovered, to our amazement, that we were expecting another child!

When our daughter was on her way, I thought I was ready for anything. And then she decided to come 12 weeks early. Between hospital stays, doctor's visits, therapies, and long nights, it took years before I felt that I was even remotely in control of my life. I can't imagine how she felt. She didn't even get to boss me around like her brothers did. At least not till she was a little older!

So, maybe what really concerns me about Parkinson's is that my future isn't as uncertain as all that. Parkinson's is progressive and, as much as I am doing to make sure I can be upright as long as possible, there is the possibility that I may one day require much more help in just being able to live day to day. If that happens, I want others to know NOW how I want to be treated. I'm not taking any chances, you see. Though experience has taught me that it's not very realistic, I still want to feel that I have some control over my life. Will I ever learn?

So... If I ever need others to take care of me, I want people around me who will allow me to live a normal life. This means:

• Friends and family who will get me out of the house and into the world, even if I am grumpy about it.

• Friends who will pour me a glass of wine and help me drink it, even if I'm not supposed to have it.

• Friends who will tell me bullshit stories and make me laugh.

• Friends who will make me cry.

• Friends and family who won't mind if I tell the same stories more than once.

• Gossip. If there is a juicy story, I will want to hear it.

• Adult stories. I don't ever want to be talked to as a child. Politics, religion - don't stick with "safe" subjects! I want to always have an opinion. You can even swear, if you need to.

• Friends who will get mad at me from time to time. And who will take it if I get mad at them.

• Friends who will tell me if I'm out of line.

• I want my friends and family to tell me what is going on in their lives, even if it's painful. Don't keep things from me so I don't worry. You are my family and my friends and I have every right to worry about you.

• Friends and family who will hold my hand or put an arm around my shoulder.

• At least one friend who is not afraid to kiss me on the lips, even if I drool.

• Someone who will sing with me, no matter how I sound.

Being normal, being a real living human being means experiencing life. And life is both beautiful and painful. Experiencing life means experiencing disappointments and triumphs, joy and intense sadness. Sometimes it means getting really pissed off, too. And it can be delightful to get really pissed off from time to time. It's energizing and it keeps the brain working.

I don't want to be wrapped in cotton wool. Being safe doesn't mean padding all the corners and keeping me from falling down. Being alive means getting hurt from time to time. I don't ever want to be too protected. I want to be able to struggle - physically and emotionally. I want to wrestle with the real questions of life and love and friendship and what does it all mean, anyway.

I want to keep bumping into life and crashing into love. Life does make its marks on each of us, but don't worry. The marks you see on me? They're just love bruises.

Making Life Good

When I was 21, I was single, energetic and healthy. I was a student obtaining my Master’s in Social Work at the University of Wisconsin. At age 22, I met Tom, my future husband, and moved to Canada, and at age 24 we got married. Life was good.

At age 46, I was diagnosed with Parkinson’s (PD). Life was still good and continues to be good at the age of 58.

Yesterday I met IndyMama (Lynn) online. Lynn and I are the same -- both married and have PD. However, we are different in that Lynn is 21 years old, and she’s a mother, student, and employee with a genetic, family history of PD. Lynn grew up living in a home with PD when her father was diagnosed at age 39. Lynn began experiencing PD symptoms at the age of 18.

This week Lynn launched her new blog, Young Parkinson’s: My Journey. You will enjoy Lynn’s warm and personal style of writing. Her message is “You are not alone.” She is wise beyond her years (living with PD does that to you). Lynn welcomes comments and stories from her readers.

I can’t imagine what it is like to be a young wife, mother, student and employee with PD at the age of 21. However, after reading her blog, I know that Lynn’s positive attitude and determination will make life good for her and her family for many years to come.

Surviving Adversity: Living with Parkinson's Disease

Gord Carley was motivated to write his latest book, Surviving Adversity: Living with Parkinson’s Disease, by his mother’s ongoing battle with Parkinson’s Disease (PD).

The book contains 28 profiles of a professional golfer, neurologist, acclaimed lawyer, children's author, nurse, legendary cyclist, former Attorney General, highly respected news anchor and other men and women. They all share their inspiring stories of how they have adjusted to PD.

Before reading this book, I was concerned that it might be one of those gloomy disease books, but instead I found the book instilled hope. Being a PD patient myself for the past 11+ years, I was inspired by each patient’s story of how each coped with PD and managed to live life to the fullest. I highly recommended reading their upbeat stories. Fifty percent of the net proceeds from this book are allocated for PD research.

Further information about this book can be found at the following website:
http://www.survivingadversity.com/livingabout.html

Coping Tips from the Front Lines

Coping Tips from the Front Lines
By Joel Davis
Copyright © 2007

“Enjoy Every Sandwich”
—Warren Zevon (1947-2003)

Some coping tips from a PDer who had made about every mistake you can make with this disease – and lived to tell about it.

1. Be your own best advocate.
The neurologists are slammed; the few area movement-disorder specialists who specialize in Parkinson’s are especially busy. Help them by helping yourself.

Bring your list of medications (or the bottles they come in), your questions, your caregiver/significant other or friend to your appointments. Most doctors are agreeable with tape-recording appointments, which can be invaluable for both sides. I like to record my appointments, then listen to them before my next appointment to bring myself and my medical provider up to speed. It also helps those with memory issues to have something to fall back on, so you don’t keep asking your neurologists the same questions over and over.

Also, pay close attention to the warnings to the drugs you are taking. These are high-powered brain drugs that can have high-powered side effects. The 16th century Swiss chemist Paracelsus was onto something, perhaps prescient about certain dopamine agonists, when he said famously, “The dose makes the poison.” Read the warning labels, then read them again.

2. Exercise your body.
Even if you have mobility issues, doing ANY sort of exercise – even if it is simply squeezing a rubber ball or moving your toes or neck – is perhaps the best thing you can do for yourself. I have found walking around my neighborhood – taking different routes for variety – for about 30 minutes to be the safest, best way to get exercise. I also enjoy league bowling as it is fairly easy on the body, inexpensive and provides social interaction in a setting that is very accommodating and comfortable (bowling alleys are especially nice on the hot days that are so rough on PDers) for folks with disabilities. There are also PD-specific yoga and Tai Chi classes.

By contrast, be careful not to overdo it. If you have doubts about your ability to do an activity – skiing, roller skating, riding a bike, mowing the lawn, cleaning roof gutters, when your balance is wobbly, for instance – it probably is best to avoid.

I wear a stylish (at least to me) baseball batting helmet with real protection – not one of those cheap ballpark freebies – any time I do something that is even remotely dangerous, such as pretending to listen to my wife share her day while trying to watch TV. (The helmet I wear is available at: http://bplowestprices.com).

3. Exercise your mind.
Even if you are stuck at home most of the time, have some varied activities. I have what I call “Joel University” in my home: everything from books (even before being diagnosed, reading was my favorite pastime, a PD bonus!), to DVDs to video games to music to computing to volunteering. Volunteering is its own reward. I learned relatively late in my life that the saying “You get real happiness when making others happy” is mostly true.

If an activity is not working, keeping me engaged, I simply move on to another, even if it means curling up with the newspaper or a favorite book. Try to avoid getting hung up on one activity and having it turn your mind into mush faster than it needs to or doing something so much it becomes a compulsive behavior.

4. Use but don’t abuse the Internet.
Sites such as Parkinson Association of Northern California, the National Institutes of Health, and the National Parkinson Foundation provide useful, practical information. National Parkinson Foundation’s “Ask the Doctor” feature (http://forum.parkinson.org/forum/), for instance, is interactive and can be tremendously helpful.

You can get just about anything on the Internet now, which can be a huge convenience compared to having to go to a store, find parking, deal with funny looks from pinheads, etc.

But be careful of spending too much time online. PD chatrooms, which can be comforting, but can also be rife with misinformation and conflict. And if you find yourself gambling or looking at sex sites all day, or going on spending sprees, you should probably get outside help from a behavioral specialist.

5. Be prepared for psychological changes.
The meds, the disease or a combination of both, can jump you before you know it. Both you and your caregiver(s) should have a plan in place in the event of hallucinations, dementia or any other behavior changes. This is perhaps the most underreported part of the disease, yet is often the most damaging and life-threatening. I personally feel the newly diagnosed should immediately be referred for a psych evaluation; the medical and psych worlds are often disconnected with PD. Again, do your homework.

6. Beware of quick “cures” and unverified medicines and supplements, i.e. unethical scumbags who only want your money. If what is being proffered sounds too good to be true, it probably is. Check with your neurologist and other doctors before wasting time and money on quick-cure charlatans.

7. If you are on the fence about deep brain stimulation surgery (DBS) but think it could help and if you qualify for it physically and mentally, get on the waiting list. It is to date the most effective surgical treatment for PD and, while not for everyone or without risk, DBS can lead to significant improvement in tremor, rigidity and dystonia. If something better comes along or you decide you don’t want this reversible surgery, you can always get off the list, which can be long and impacted by things well beyond your control.

8. Volunteer for PD research study groups, but be wise about it. If something is going into or being injected into your body that has not effectively treated rats, monkeys, let alone humans, it is probably best not to be the first human guinea pig. I routinely volunteer for a local teaching hospital as a PD patient from whom the med students can learn. No pills, needles or other invasive elements. Just poking and prodding – diagnostic volunteering that ideally will help accelerate PD treatments for the better and help both sides. Plus I usually get a small stipend.

9. Cut your caregiver some slack.
This is huge. Make sure they get some “me time” away from you and the disease. My wife does not attend many PD seminars (“I get enough PD at home”), and I don’t blame her. Help where you can. I try to live by my own “two for one” rule: If I get up and get ONE thing out to wear/play with/work on, I try to put TWO things away, though sometimes the reverse is true.

10. Do things mindfully.
Almost everybody has a lot on his/her proverbial plate, and given what PD can do to the short-term memory, it can be downright confusing to navigate the modern world. The key is to focus on the matter at hand, and not move on to something else until the matter at hand is resolved/finished. This is especially true if you drive.

11. Finally, it can’t be stated enough. Be your own best advocate!
The more you and your caregiver can do for your medical providers, the more they can and will do for you. It’s very reciprocal. Parkinson’s is a clinical disease – no blood test or X-ray detects it – and most of us with it are misdiagnosed when symptoms first appear. So don’t be afraid to make some well-educated, polite noise to get answers.

And…don’t forget to enjoy every sandwich.

Parkinson Association of Northern California Board-Member/Newsletter Editor Joel Davis is a Sacramento writer whose work – including articles on PD – is at www.justicewaits.com.

Any suggestions in this column are for general information only.

Miracles Do Happen

Miracles Do Happen
By Valerie Graham
Copyright © 2007

It was a typically mild Colorado winter day in mid-December in 1999 as I sat in my doctor's office relaying my symptoms to her, i.e., a radical drop in my energy level, nauseous throughout the day and, oh yes, I was a couple weeks late for my period, which wasn’t that unusual given my age of nearly 47. My doctor laughed and said that I was no doubt pre-menopausal and that I should make another appointment to discuss hormone replacement therapy. Then she proceeded to examine me physically. After noting some tenderness in my lower right abdomen, my doctor stated that she suspected appendicitis. She wanted to have my blood drawn and I needed to return to her office the next morning. Looking over her shoulder as she exited the examining room, she told me not to be surprised if we had to schedule surgery the next day.

I returned to my doctor's office as requested the following day. She entered the examining room with a somewhat puzzled expression on her face saying that the results of my blood test were unexpectedly normal. When I queried her as to what she thought the problem was if not appendicitis, she replied that she was uncertain. She wanted to run some more tests, including an x-ray of my abdomen. But, given our conversation on the previous day, she wanted to do a quick urine test as a precaution before I had the x-ray. While I was doing that, my doctor would decide what additional tests were warranted.

Obediently, I delivered the goods, and then returned to the examining room pending further instructions. As I sat there nonchalantly skimming some scandalous tabloid for the latest gossip, a rare indulgence in my hectic schedule, in strode my physician with an inscrutable smile on her face. "Well," she said, "I know it's impossible, but you are pregnant, my dear." I immediately burst into tears. Could it be possible after dutifully serving as "step-monster" to two sets of two kids each that my most heartfelt desire to become a "real" mom had come true?

The first set of kids were from my first marriage, now grown and married themselves, the oldest having honored me by allowing me to be present in the delivery room when each of my two grandsons made their entrance into this world eight and six years ago, respectively. The second set consisted of my second husband's two teenage sons, then ages 15 and 18.

It was, as my doctor so aptly stated, impossible! After all, I was nearly 47 years old and had never been pregnant. In addition, I had been diagnosed with Parkinson's and, as a result, I took an elaborate cocktail of very powerful drugs several times a day to control the symptoms. Also, my husband had a vasectomy long before he met me, a procedure which had obviously been successful as we had lived together for nearly five years at that point and, due the circumstances, not used any form of birth control without producing any babies. As I repeated all the reasons why it was impossible, my doctor nodded her head in agreement but said that the results were indisputable.

Afraid to believe the news, I then calmly explained to her that obviously there was only one logical explanation which was that the test had resulted in a false positive. For the briefest moment she seemed to entertain the notion as she acknowledged that perhaps that was a possibility although she had never encountered this in her years of practice and thought it highly unlikely. More likely, she said, in a slightly quieter and more solemn tone of voice, was the possibility that I had an ectopic or fallopian pregnancy which, if proven, would require immediate termination.

From entertaining joyous, though incredulous notions of pregnancy one moment, to contemplating the prospect of an abortion, albeit in the very earliest stages of life, my mind, body and soul swooned at the enormous swing in life's pendulum. Before I could properly collect my thoughts, though, I heard the reassuring voice of my doctor say that, with my approval, she would schedule an ultrasound later that very day which would resolve the uncertainty.

I somehow managed to convey my consent to this course of action. The next thing I knew I was alone in the examining room while the arrangements were being made. Prior to that time, I do not recall ever having been so frightened, yet so excited all at the same time.

Without realizing what I was doing, I found myself dialing my husband's office on my cell phone. Having no idea what I would say to him, I heard a familiar male voice answer. Before I could formulate a strategy in my mind, I heard him ask, "Are you calling me from your doctor's office?"

I meekly replied, "Yes."

"You're pregnant, aren't you?" he simply asked without betraying any emotion.

"That's what they think," I remember stuttering, before a jumble of words and emotions spilled out of me. "They've scheduled an ultrasound later this afternoon," I stated tremulously, "If it's an ectopic pregnancy, my doctor said it will have to be terminated."

"It's okay. I'll be there with you, honey," he reassured me.

Later that afternoon, I sat on a cold hard metal table with my feet in stirrups, my husband by my side and my sweaty right hand enveloped in his slightly larger, sweatier left hand. Our eyes were glued to a screen which would map our future. The technician efficiently conducted an ultrasound of my uterus. Miraculously, an image resembling a pinto bean in size appeared before our eyes, unremarkable except for its distinctive rhythmic pulsing. This was to be the first glimpse of our precious daughter, Abigail Quinn, the miracle baby, an undeniable gift from God, a soul determined to come into this world against all odds. A mere six weeks old, the healthy beating of her tiny heart was unmistakable.

The ensuing months were to present many challenges, all of which were met with varying mixtures of grace and trepidation. Fortified with the results of a normal, healthy amniocentesis and regular ultrasounds (one of the few advantages of "elderly primigravida"), we strode confidently through the remaining term of my somewhat difficult pregnancy. At 5:19 p.m. on Wednesday, August 2, 2000, after enduring nine months of "morning/noon/night and middle of the night" sickness and four broken ribs, our precious Abigail was delivered into this world by C-section, measuring 20 inches and weighing 7 pounds, 4 ounces—proof positive that miracles do happen!

Identical Twins

I wanted to tell the man sitting nearby at a restaurant in Denver that he had an identical twin in Sacramento.

I heard his familiar voice. I asked my husband Tom to close his eyes and to identify the person behind the voice. He confirmed that it was the voice of Joel Davis, an author and friend with Parkinson’s Disease, who we recently visited while vacationing in California.

We scrutinized this man when he ambled to the buffet. He could have been Joel’s identical twin: both being in the mid-40's, same face, both around 6’4” with a large build. We eavesdropped on his conversation and assumed he was a lawyer or a law professor chatting about depositions and hearings.

However, this mystery man was hunched over when he walked. While I observed a stooped posture in Joel a couple of years ago, on this visit Joel was standing tall. After Joel’s second deep brain stimulation surgery in April 2007, he experienced a remarkable recovery. Joel looked like a man who never had Parkinson’s: no tremor, no dyskinesia, no stiffness and in good spirits.

I knew that Joel had no brothers. It was just an eerie coincidence.

For stories written by Joel on his brain surgeries as well as information about his book (not on brain surgery), check out:

The Heart of the (Gray) Matter by Joel Davis

I Knew the Drill by Joel Davis

Book: Justice Waits by Joel Davis

The Two Bodies of PD

At 30 years old, Ben Petrick, former catcher for the Colorado Rockies professional baseball team, has been battling Parkinson’s (PD) for seven years. He returned to Denver this week to increase awareness about PD and to offer his message of hope.

When I read Terry Frei’s story, Petrick Positive in Face of Parkinson’s in The Denver Post on July 1, 2007, I was struck by a couple of things.

Ben was diagnosed of this “old person’s disease” at the age of 23.

Ben’s father, Vern, also has PD.

Ben described himself as follows: “I have two bodies. I have one that, when the medication is working, I function pretty well. I have another that doesn't function well at all when the medication isn't working. When the medication's working, I can hit, I can throw, I can shoot hoops…When I'm off, I kind of just turn to stone."

It dawned on me that I also have two bodies with PD.

When my medication and deep brain stimulation’s settings are working, my body’s nickname might be Competent Kate. With this body, I almost seem normal, exhibit little or no tremors or dyskinesia, walk with a purposeful stride and have a strong voice. However, when my medications and stimulator settings are not working properly, my other body, Calamity Kate emerges with her slow movements, stiff posture and slurred words.

Consequently, I have one life with two unpredictable bodies with PD.

Did You Say Ombudsman?

Did You Say Ombudsman?
By Valerie Graham

I was stunned to learn about the following incident and think you will be too. It came to my attention that a man suffering from Parkinson’s Disease became involved in a domestic dispute which ultimately resulted in him being taken into custody by the police. The police then proceeded to deprive him of his meds for nearly 21 hours despite the fact that he carried the standard card in his wallet identifying himself as a Parkinson’s patient! Needless to say, this caused the gentlemen untold pain and humiliation.

Hi! My name is Valerie Graham and I am a lawyer living in the Denver metro area who was diagnosed with Parkinson’s Disease more than 15 years ago. Like most who are afflicted with this disease, I have experienced the gamut of symptoms and side effects which are part and parcel of living with this chronic neurological illness and have even undergone Deep Brain Stimulation (DBS) surgeries. After 4½ years of nearly continual adjustments to medications and the neurostimulators, I am happy to report that I am now enjoying a period of relatively good health—so much so that I have become much more active in volunteering in various capacities, including the Parkinson’s community. Recognizing the unique concerns associated with DBS surgery, a friend of mine, Kate Kelsall and I recently organized the first DBS support group in the Denver area.

As a result of this incident and similar situations that I have become aware of, I perceive a need for someone both versed in the law and intimately familiar with the ramifications of Parkinson’s to serve as an advocate of sorts on behalf of others in the Parkinson’s community. This ombudsman, if you like, could educate the public, particularly those in positions of authority within the legal system such as judges, juries, lawyers, probation counselors or parole and police officers.

While I have found many people receptive to the concept, I find it difficult to believe that I am the first to conceive this idea. I am also having trouble locating resources which might help me launch this concept. This is why I am appealing to those of you who may be familiar with similar programs or could put me in touch with others who might be helpful in developing this role. If so, please contact me via email at vgraham999@comcast.net.

This is an idea whose time has definitely come!

Walk or Talk

I cringed when I heard someone say, “You can walk or talk with DBS.” DBS referred to Deep Brain Stimulation surgery for Parkinson’s Disease (PD). I wondered if it was a cruel joke, making light of PD and such serious brain surgery.

Perhaps I’m greedy, but I’d prefer to walk and talk with DBS. So does Pam Gehrts.

Pam is too humble to tell her story, but generously gave me permission to share it with you. Pam doesn’t consider herself a PD hero because “we're all going through the same thing” on parallel PD paths. However, I personally don’t believe that the number of PD heroes is limited but is infinite. We are all trying to make a difference in this world, fighting the good fight, while living with this debilitating disease.

***

Pam’s Story

“I’ve had Parkinson’s Disease (PD) for sixteen years – since age 35. I’m now 51 years old. Needless to say, I’m a “young on-setter” (Young Onset Parkinson Disease - YOPD). Due to PD, I was forced to retire from my career as an urban planner about ten years ago. When my PD symptoms began, I had two young children, ages 7 and 3, and I had just started my own urban planning consulting firm. I had the credentials (a Master’s Degree) and extensive work experience to be on my way to the “good life” – then PD hit and everything changed.

For the first five years, I was in denial. I didn’t take any PD drugs and persevered in spite of this insidious disease. Naively, I thought no one noticed my tremors and slow movement. Finally, everything caught up with me, and I started taking the PD drug Sinemet. Sinemet got me through the next four years but there are horrible side effects to this drug - dreaded “dyskinesias” (uncontrollable body movements). From that point on I went down hill fast. I had extreme pain from dystonia (muscle spasms and rigidity) in my legs. I lost over 40 pounds from the constant and violent dyskinestic movements.

In spite of my loving family and supportive husband, the daily physical pain from PD was unbearable and at age 48, life was not worth living anymore.

Deep Brain Stimulation (DBS)

On December 22, 2003, I had bilateral Deep Brain Stimulation (DBS) surgery at the University of California in San Francisco. During this 11-hour brain surgery, two pacemakers were implanted in my chest and wires were run under my skin, up my neck into to holes in my skull.

Although DBS was not a cure, it gave me back much of my life. I no longer have the unbearable leg pain and the dyskinesias are gone. I still have mobility issues with walking and balance, but in the scheme of things, these problems are a small price to pay for the temporary relief from the terrible physical pain and disability of PD.

But alas, no PD treatment is without its side effects. Due to the DBS, I now have slurred and delayed speech. I’ve given up ordering Chinese food over the phone or calling motels to make reservations. I usually get hung up on because they think I’m drunk. (I seem to have the most trouble being understood by nonnative speakers). “Getting the words out” is an exhausting experience because my lips are so tight over my teeth. By the end of the day, I feel tired, frustrated and misunderstood. I tried conventional and LSVT (Lee Silverman Voice Therapy) speech therapy. But, voice volume is not my problem – my problem lies with the DBS stimulating the area of the brain that coordinates the muscles that control speech. I know this is true because when I turn off my DBS my normal speech returns in several hours. Unfortunately, the PD symptoms also return and I must turn on the DBS again.

Before my surgery, I had been homebound for several years and was visited on a weekly basis by a wonderful volunteer from the Friendly Visitor’s Program. Once I had my DBS surgery, I no longer fit the program’s criteria and I ‘graduated’. During my pre-DBS years of physical pain and debilitation, I always said that, “If I can ever function again as a person without extreme pain and disability, I want to volunteer my time and share 'the lessons' that I have learned.” My wish came true and I learned about a wonderful disability awareness group called A Touch of Understanding (www.touchofunderstanding.org) started by Leslie DeDora.

A Touch of Understanding (ATOU)

ATOU’s talented and compassionate volunteers go into Sacramento-area schools and share the message that disabled people are just like everyone else. Disabled people like to have friends, they like to go places, they have family and pets, and most importantly, WE have feelings and souls. The kids hear the message that by choosing to be kind to all people – even those with disabilities- the world is a better place for everyone.

The three-hour ATOU program consists of two parts – in one part, the kids are introduced to a hands-on activities which allow them “to walk in the shoes” of a disabled person. There is the mirror station (which replicates the experience of having a learning disability); the Braille station where kids learn how to write their names in Braille; the prosthetic station; the wheelchair station, and the white cane station. The second part of the program consists of disabled speakers sharing their stories. Some of the speakers were born with their disability and others became disabled due to an accident or a disease.

ATOU has given me the opportunity to share my story with the kids – YEAH, my wish has come true! I have always found the kids to be empathetic, curious and supportive. After my talk, it is so rewarding to see the warmth and the twinkle in the kid’s eyes that clearly conveys, “Ah...now I understand …”

Although I have been an ATOU volunteer for almost three years, it has become increasingly difficult because of my speech and voice difficulties. For the past two years, due to DBS-related speech problems, I have been unable to be a speaker for this program. However, on February 23, 2007, I turned off my DBS so I could present "my story" to twenty-nine sixth graders. I have never turned off my DBS before as it was too scary. I turned off my DBS at 8:30 AM and spoke to the students from 9:45 AM to 10:15 AM. My speech was clear and it got clearer as the day progressed. I had to turn the DBS back on at 3:30 PM due to the return of debilitating PD symptoms. Within an hour of turning my DBS on, my speech reverted back to slurring with the tight lips and throat. This was a very interesting DBS/speech experiment.

I touched one little girl so much during my presentation that she cried. She left the room to compose herself and after the speakers finished and we asked for questions, she said, "It's not a question, it's a comment. I want to thank you all for coming. You are all my heroes." The teacher then told us that during the time she went out of the classroom to compose herself, this sixth grade girl committed to becoming a neurosurgeon when she grows up.

Because of my ongoing speech and voice difficulties, I recently consulted with the same neurosurgeon who performed my first DBS surgery. He has agreed to perform a second DBS surgery on April 10, 2007. He hopes to move the electrodes to a place in the brain that allows me to speak and doesn’t compromise my mobility.”

***

Although Pam doesn’t consider herself a hero, I consider her one. I look forward to her walking and talking with ease and spreading her message of hope and inspiration.

Joel’s Doing His Part to Increase Awareness

Joel Davis is the Editor of the newsletter and a Board Member of the Parkinson Association of Northern California (PANC) in Sacramento. Joel and his group designed a spiffy new T-shirt to increase awareness about Parkinson’s Disease (PD). With the slogan “It’s Parkinson’s, and we’re fighting back,” the T-shirt was created for those living with PD and their support team. See page one of PANC’s February/March 2007 newsletter for a photo.

Describing the T-shirt as a “kind of necessity being the mother of invention,” says Joel, “now people have an answer when they see me spazzing about.”

Also check out Joel’s personal website at www.justicewaits.com and his award-winning story, The Heart of the (Gray) Matter, about his experience of deep brain stimulation surgery.

Charlie's Awkward Dance Becomes New Reality

I enjoyed Sam Massarsky’s review of the Awkward Dance CD of Charlie Nimovitz. Sam incorporates Charlie’s song titles and lyrics in his clever synopsis. Check it out (below).

Awkward Dance by Charlie Nimovitz
Reviewed by Sam Massarsky in CD Baby
Reprinted with Permission

So it’s finally arrived. Awkward Dance is now a reality. When Charlie’s shakin’, he can shake with the best of ‘em cause it’s just what he does. It can’t be helped. But this is no superficial “shake it up baby dance”, and it doesn’t take long to see and hear there’s a world of emotion as you are enticed to allow yourself to “go deep”. And that can’t be helped either. So take a breath and dive right in. What’s true is the realization that all of us have known these moments of waking, and risking, and feeling love starting on it’s way and ultimately the feeling that it was meant to be. What’s true is that we’re all just trying to get it right…in spite of everything…in this moment. I’m saddened when I think that Charlie might have listened to that inner critic and could have been tempted to give it up…for good. When suddenly all the rules are changed, it’s easy to understand how it could happen, but thank goodness that love and hope always seem to rise up again as if in a reoccurring dream. I know it’s not quite what he meant in “Gets Me Every Time”, but when I listen to Charlie’s songs, he “gets ME every time”... Each of these songs is a special moment in time. So what’s gotta change? The next change is the next moment and it will happen anyway. All I know is we’re all closer in our journey home with every moment that passes, and that I’ll never lose my faith ‘cause there’s magic in these songs.

Time-Less

I'm happy to introduce guest blogger, Heather Puckett.

Time-Less
By Heather Puckett
Copyright 2007

Time is relative. In the entertainment industry, 40 has become the new 30. So say those with seeming authority who attempt to explain why the ever-aging stars continue to enjoy noted popularity among the most coveted audience: 18-25 year olds. I embraced this one-line zinger in the infant stages of 2006. I, after all, am one of the bicentennial babies who crossed the threshold into a brand new decade – my 30’s. I remember approaching this birthday with dread – waving goodbye to my 20’s much like a freshman standing on the steps of their new dormitory, watching their parents drive away.

A distraction came in those first few months – actually I had successfully ignored the issues up until then. The symptoms, however, would no longer be ignored. My left side had gone on strike, it seemed. Though many doctors dismissed me by saying, “You’re so young,” (a different opinion in comparison to my feelings about turning the big 3-0), others confirmed fears I hadn’t considered: incurable disease. It’s funny how you can be in such denial with relentless symptoms welcoming you each day. My age became relative at this point. My birthday in June was an afterthought – what happened in July became a much bigger milestone. The fears were confirmed and met with medication to quiet only the manifestations of a degenerative condition: Young Onset Parkinson’s Disease.

My opinion changed about my age. Instead of feeling that the best of times were but a memory, I began feeling robbed….I was only 30 years old. My ventures on the internet to understand PD reduced me to tears – not the type that gently roll down your cheeks – it was more of an onslaught of devastation.

I began experiencing realizations and grasping concepts that those my age fail to consider – why would they, amid a phase of life that makes you feel almost invincible. I found myself imprisoned. Not within four walls, or smothered in an addiction…..not trapped in an abusive relationship……I was a prisoner within my own body. I felt as if my very self clawed at this shell – desperate to live, to emote, to function. I understood, then, that I am a separate entity housed within this flesh. Though these realizations did not do much to chisel away the anger and fear, they did force me to think about the real meaning of life.

I suppose that my mind and heart had the capacity to go there because of my chosen profession. My life is consumed by a ministry – one that provides restoration to those struggling with drug and alcohol abuse. Students within this residential ministry represent the increasing population of people who have also been dismissed by others. In reality, their own families have all too often given up on them. Washing their hands of a person they had held as an infant, having once gazed upon that sweet face, dreaming of what could be in their future. Those memories died long ago in their hearts and were replaced with a heartache and frustration barely contained or easily expressed. I think God gave me the ability to look at what seems hopeless and still believe that life could be different. Impossibility is really in the eyes of the beholder….anything is possible. “He has sent me to bind up the brokenhearted, to proclaim freedom for the captives and release from darkness for the prisoners…..to comfort all who mourn…to bestow on them a crown of beauty instead of ashes, the oil of gladness instead of mourning, and a garment of praise instead of a spirit of despair.” Jesus had unrolled the scroll in a temple to share these words from the prophet, Isaiah, and stated that this scripture had been fulfilled. In much the same way, I considered this a calling on my own life – to help these women forge relationship with Him and experience life and that more abundantly.

Yes, my heart could go there…..but could I embrace hopelessness and imprisonment in my own life? In hindsight and still daily, I consider my relationship with Him to be the only thing that keeps me from completely crumbling. I considered these ideas as I thought about the lives of Michael J. Fox and Joel Davis – an author who battles Parkinson’s Disease. Michael J. Fox became a celebrity, bearing obvious motivation for such an endeavor. Now he uses that stardom to be the voice of so many longing for a cure – using his life to make a difference for so many others (his next book is due in 2008 with the subject being optimism – imagine that). Joel Davis wrote a true crime book – and, again, one could assume what his initial motivations might have been in publishing a book. During his time of research, he was ambushed by the same warrior. Despite his suffering, he forged to completion and partially alleviated the pain of families who had experienced inexpressible loss. Motivations change…..and as I look at these men who continue living despite Parkinson’s…..not discouraged but determined…..I realize I also have a choice.

I choose how to live despite dismal days of physical limitations, cognitive short-circuits, and emotional handicaps. Far from perfection, I still approach life as if I am a ticking-time bomb in so many ways – mentally composing a list of the things I want to do before significant digression. Instead of attempting to come across as some low-level super hero who has it all together, I choose to live each day as it comes. In the mean time I will try to be patient with myself….I will allow myself to feel – I will challenge myself to live.

Charlie's Awkward Dance

The blessings from writing a blog about living with Parkinson’s Disease (PD), are the wonderful people that I’ve discovered along our parallel PD paths.

Some of you may recall the blog that I posted on November 12, 2006, entitled Calling All Shaky Accordionists. When performing a Google search of “accordionists with Parkinson’s” out spewed a long list of obituaries of people with PD who played the accordion when they were living, but all were now dead - except for Charlie Nimovitz of San Rafael, California. I checked out Charlie’s website and sent him an email. Charlie found my email in his spam mail, determined that my email was legit and gave me a phone call. We’ve been online and telephone buddies ever since.

We are the same in many respects: both have PD, both are the same age, both play the accordion, and Charlie is considering the same Deep Brain Stimulation surgery that I had in May of 2005, with the same neurosurgeon at the same facility in the same city of Sacramento. We are different in that Charlie is a professional musician, singer, songwriter and entertainer who performed in the San Francisco Bay area for more than 30 years while I am an amateur musician, having played the accordion as a hobby for the past 10 years. However, we have determined that unless someone tells us otherwise, we are the only two accordionists living with PD left in the world.

When Charlie was diagnosed with PD in 2000, he took a break from music and eventually returned to performing and the studio and recorded a new CD, “Awkward Dance.” He sings, plays the keyboard and accordion on this CD. Three of the songs directly relate to Charlie’s experience of living with PD.

When listening to his CD, “Awkward Dance,” I was struck by his compelling voice, touched by his sensitive lyrics and appreciated his self-deprecating humor. What I admire most about Charlie is that he continues to perform in public, even with his severe and debilitating PD symptoms. He is a true PD Warrior.

Two of Charlie’s songs “Awkward Dance” and “My New Reality” are featured in the final version of Deborah Fryer’s award-winning documentary, Shaken.

To learn more about him and his music, check out Charlie's website at http://www.charlienimovitz.com/

Justice Waits

I had pre-surgery jitters when I first met Joel Davis online in March 2005. The following month, I was traveling to Sacramento, California for Deep Brain Stimulation Surgery (DBS) for Parkinson’s Disease (PD). I searched on Google to learn about the reputation of the surgical team, but instead I found Joel’s story, The Heart of the (Gray) Matter. Joel had the same surgery with the same surgical team in the same hospital in June 2004.

Joel became my first PD friend. For nine years, I had avoided meeting fellow PDers through denial, lack of involvement with the local PD association, not attending PD support groups, scheduling neurology appointments first thing in the morning – anything to avoid others that might have the same medical malady. When I often passed as healthy, or so I thought, my magical thinking went like this: If I don’t talk about PD, think about it, associate with people with PD, then I don’t really have it. However, with the progression of PD, I could no longer minimize it. It was already maximized.

When my husband Tom and I finally met Joel in person, he called us from the lobby of our hotel and described himself as tall and shaky, while I described myself as short and shaky. Joel and his wife Kelly provided tremendous emotional support to us during our 24 day (but who’s counting) stay in Sacramento.

Joel wrote a true crime book, Justice Waits: The UC Davis Sweetheart Murders.The case’s twists and turns will be aired in the CBS television “48 Hours Mystery” hour-long program this Saturday night, January 27, 2007. Joel’s six-year struggle with PD will also be part of the television story.

Information about Joel’s book and an update on the preliminary hearing that is happening this week in Sacramento, can be found on the Justice Waits website.

To read an article about the case written by Lauren Keene, check out “The Davis Enterprise” website.