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My Parkinson's Journey

In which Terri shares a humorous look at her journey with Parkinson's disease and Dystonia:

For me, illness and health are not opposites but exist together. Everyone has something that is challenging to them. Mine just simply has a recognizable name. My life will take a different path because of this but that's okay. Everyone has changes in their lives that create their path.  I'm learning how to enjoy whatever path I'm on.

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Brunch for a Bunch or Growing up with the Reinhart's

Terri Reinhart

A couple of girls in my high school class were arguing one day about who is included in one's immediate family. One insisted on only including your parents and siblings. The other just laughed. No, she said, your immediate family includes your grandparents, aunts, uncles, and all your cousins, and everyone comes to every family gathering.

My mother-in-law, Natalie, was even more inclusive. Family gatherings included all of the above plus a few neighbors, several of her teacher friends, friends of her children, and maybe a family or two from the school where she taught.

I think I fell in love with my in-laws as quickly as I fell in love with my husband. Chris was smart. He took me to meet his family very soon after we met. It was a Saturday or Sunday evening and everyone had come home for dinner. I learned, over the next few months, Chris and his 5 siblings were free to invite friends for dinner and they frequently did.

Natalie loved to cook. She had been a nutritionist in the army during WWII, stationed in England. She was used to cooking for hungry crowds. This was good, because during the next year, three of her children married, including Chris and I. As our families grew, the family gatherings grew, too. Before long, all of us were married and bringing our children along. You'd think with 6 children and their spouses and 18 grandchildren, this would be enough immediate family for anyone, but Natalie found people endlessly interesting and there would often be someone new to meet, in addition to a few old friends, colleagues, and neighbors. If anything, the gatherings became larger and included more people as the years went by.

Natalie passed away in November of 2006, five years after her husband, Paul. Chris and I visited her the day before she had the seizure from which she never awoke. She dozed on and off, but whenever she was awake, she asked about everyone in our family. Just before we left, she woke up to say goodbye. Looking up at us with bright eyes and an even brighter smile, she said, “It's been fun, hasn't it!” On the way home, Chris told me he felt she was speaking more of her life than of the moment.  It wasn't until later, we learned these had been her last words.

We still get together, but not as much. Natalie was the matriarch and truly, I believe people came together to be with her. She left us with memories of warm meals, large family gatherings which never felt crowded, and a gentle sense of humor which occasionally included novelty eyeglasses (with eyeballs on springs) and an umbrella hat.

She also left her recipes, organized in cardboard boxes, some typed, some handwritten, and some with the unmistakable purplish blue print of the school mimeograph machine. On the recipes, she kept a diary of sorts; notes on doubling the recipes and how much was left over, who came to each gathering, and how they set up the tables and chairs. Our son, John, took some of these recipes and created a lovely recipe book, which is available online.  Take a look!  He included copies of some of the original recipes, notes and all:

Easter Brunch and a Bunch More

Now, our own family is growing. Our third grandchild is due to arrive any day now. Just having our kids and grandkids together makes for a full house. Lately, however, both Chris and I have been missing the large Reinhart family gatherings and this year, we invited everyone we could think of to join us for Easter. It was wonderful!

We plan to continue this tradition, though I would never try to take Natalie's place. That would be silly. For one thing, those would be big googly-eyed glasses to fill.

 clicking on the photo will take you to the online store where one can purchase googly-eyed glasses & other novelties

clicking on the photo will take you to the online store where one can purchase googly-eyed glasses & other novelties

New Year's Resolution

Terri Reinhart

dawdle \dȯ-dəl\ verb

 

I have finally, after much thought, decided what my New Year’s resolution will be. I know, I know...it’s already past the middle of January and resolutions are supposed to be made on the first, right? But, really, there’s no sense in hurrying this, you know. A New Year’s resolution needs to be chosen very carefully. It should be practical enough that you will have some motivation for keeping it and yet also show that you are one of those people who strive to take life seriously and make the world a better place just because you are serious about it.

 

My New Year’s resolution is to dawdle.

 

The word, “dawdle”, has several meanings in the dictionary, but the one I like the best is: “to take one’s time, proceed slowly, linger”. I like this and I take it very seriously. Taking one’s time is important. I know that our society seems to think that faster is better and multitasking is an important job skill, but I suspect there are jobs that would benefit from taking one’s time and proceeding slowly. Jobs like Secretary of State, Brain Surgeon, and the Mechanic who works on the big city trucks and snowplows are a few that come to mind immediately.

 

This definition is, of course, different from the other definition of dawdling, which is: "that which my daughter does every morning before school."

 

I can think of no better time to “proceed slowly” than when one is considering the possibility of having brain surgery. That was my conclusion, anyway, after some months of evaluations, tests, and fretting over whether or not this would be the best thing for me to do. My husband and I weighed the possible benefits against the possible side effects. We spoke to the surgeon, watched the information video, and did our own research. I spoke to a number of people who had already had the surgery as well as people who are on the waiting list.

 

Everyone I talked to who has had the Deep Brain Stimulation surgery, without exception, has said that it was very positive and they are glad they had it done. Any hurdles they had to go through were definitely worth the time and effort it took to get over them. Every one of these people said that their lives were better now than before the surgery. So why am I dawdling?

 

There are a number of reasons.

 

I should probably wait till I am through menopause.  Having surgery done now could confuse things.  If I start acting a little weird, no one will know what to blame it on.

 

But the biggest reason is that I still get along well, most of the time. I can take care of myself. I can walk, get up and down stairs, in and out of the car, and drive by myself. I can still type, write, and bore my family with stories. I can talk, sing, and shout at my kids. I am not depressed or anxious about my future.

 

When one person at a support group meeting, with the best of intentions, told me that I needed to have a more positive attitude and look at the glass as half full, I was a bit bewildered. I can’t honestly describe my glass as being half full. It isn’t. But it's not half empty, either.  It’s overflowing! I have said it over and over. My life today, despite my Parkinson’s, and perhaps even to some degree because of my Parkinson’s, has never been better. I feel happier and healthier than I have ever felt before.

 

Why mess with that?!

 

So I’ll wait. My kids are glad because they have just gotten used to the daily comedy routine of watching mom flailing with knives in the kitchen, walking backwards while swearing, and occasionally falling to the floor. My husband is glad to not have to worry about the possible risks connected with having any sort of brain surgery. My friends are glad because they won’t have to listen to me fretting over this decision, at least for now.

 

And I’ll keep my resolution. I’ll find as many ways as I can to take my time. I’ll go slowly with my housework and try to honestly enjoy it. I’ll savor my art projects and not give myself unrealistic deadlines. And I’ll linger with my friends and take time to enjoy each of them as well.

 

This is serious business.

 

“When you do finally get time to yourself – dawdle!”

~advice given to me in 1998 by an expert mom.

 

 

The Show Must Go On

Terri Reinhart

The other day, when I was at the grocery store, I made someone laugh. Not just a little giggle, but a deep, belly laugh. And the fact that it was a little old lady made it all the better. Making a little old lady laugh like that could be considered my good deed for the week. In fact, depending on who I talk to, I am sure I am earning the jewels in my heavenly crown and/or filling up with good Karma. I make people laugh a lot nowadays. I’d like to say that it’s my incredible wit or my charming sense of humor or maybe even my skills as a storyteller. Usually, however, it is my own unique style of moving that gets people going. Like many great comediennes before me, such as Lucille Ball and Patricia Routledge, I excel in physical comedy.

 

If only a Hollywood talent scout would discover me someday, I might actually earn a living at this. I don’t know if Hollywood talent scouts have ever looked for their next star in the cheese aisle of the local grocery store, but if they have, they might have seen something like what the little old lady saw that day. I turned, picked up a package of cheese (medium sharp cheddar, if I remember correctly), and when I turned back to put it in my cart, I suddenly froze. I stood for just an instant and then started walking backwards very quickly. That was it. It might not sound all that funny but physical comedy is really impossible to describe properly. It has to be watched. Good comedy depends on all those little details of facial expression (I could have sworn my feet knew where the shopping cart was parked), body language (boy, did I have a few choice words to tell my body), and exactly what kind of cheese one is buying. Based on the laughter that followed, this was one of my more successful forays into the world of physical comedy.

 

I have other comedy routines that come up quite frequently but the best one had to be the night we took our good friends out to dinner. Since we were treating them, I had decided that I would order something to drink from the bar. I was being a good hostess and making sure that our guests knew that they could order drinks, too. I also wanted to try a Marguerita. Having lived in Colorado nearly all my life, surrounded by some excellent Mexican restaurants, I felt funny admitting I had never tasted a Marguerita. So I ordered one.

 

I am not a drinker. Since my son graduated from Bartending College, I now know that bartenders measure liquor in ounces. I measure mine in teaspoons. My husband says I’m pathetic. I am the “sniff it and get tipsy” type of person and I swear I can feel the alcohol in an O’Douls. The waiter brought TWO Margueritas. I thought for sure it was a mistake and asked who else at the table had ordered one. That brought the first chuckles from my friends. They knew all along that it was Happy Hour. Both drinks were meant for me. So, as I grew up a good Catholic girl, learning that it was a sin to waste anything, I slowly and carefully took my first sips. I continued sipping while I was eating and while we were talking and while a few members of our party ordered desert.

 

By the time we were ready to go, I had managed to drink all of one Marguerita and most of the other one. It was also that time of night when my Parkinson’s symptoms are at their worst. I got up from the table slowly and walked very stiffly out of the restaurant and out to the car. I did not drive home. In fact, I fell asleep in the car and slept all the way home. The next time I saw my friends, I learned that I had inadvertently provided them with a delightful comedy show. I tried to tell them that it was just my Parkinson’s but it was no use. That just made them laugh all the harder, clutching their sides to prevent hurting themselves, “You were great! I didn’t think you were going to make it to the car!” And when I protested further, they said, “Yeah, right. Terri...next time...stop at one, okay?”

 

And have them miss out on the comedy?

 

I figure that this is one of the many gifts that I’ve received since finding out I have Parkinson’s. I’m sure that Lucille Ball and Patricia Routledge had to work much harder to develop the physical comedy skills that I’ve come by naturally. There is always a silver lining and I know that falling now and then just means that I’m well grounded. I hope that, whatever else happens in my journey, I will never lose the ability to make people laugh.

 

“There is a thin line that separates laughter and pain, comedy and tragedy, humor and hurt.”
~Erma Bombeck

“What is comedy? Comedy is the art of making people laugh without making them puke.”

~Steve Martin

 

Teddy Bears

Terri Reinhart

The appointments have begun. Chris and I will see the neurosurgeon on Wednesday and I have an MRI scheduled on Thursday. The next week, I have an appointment with a speech pathologist. Then come the appointments with the psychiatrist in December, the rehab specialist in January, and a full day neuropsych evaluation in February. When I told my good friend, Mike, that I had two doctor appointments next week that I wasn’t looking forward to, he offered to loan me his teddy bear.

 

My neurologist had told me that it would be at least 7 months before I could have the deep brain stimulation surgery; it seems to me that things are moving very quickly. Am I ready for this?

 

Take baby steps. That’s what my friend, Daemon says. Just take baby steps.

 

So, I’m working on gathering information. My friends have offered their help and, along with my husband and I, we are putting together our list of questions. Considering that my friends come from very different backgrounds, we should have quite a list. A few questions have been generated already:

 

Considering that the surgery is done under a local anesthesia and I will be awake the whole time, how much alcohol will I be allowed to consume before I go in? In other words, can I take the bottle of Bailey’s and a very long straw in the operating room?

 

What if one of the doctors says, “oops”?

 

Can I take the teddy bear in with me?

 

Oddly enough, at first I found myself thinking less about the surgery itself and began panicking about having to have my head shaved and a not terribly attractive something implanted in my chest. What will I look like after this surgery? I’ve never been overly concerned about my physical appearance, so I didn’t expect to be stressing over these aspects of the procedure. Maybe the actual brain surgery is just a little too daunting to think about yet.

 

Then there is that visit with the psychiatrist to think about. I’ve never been to a psychiatrist before and it sounds a little intimidating. What will she be asking me? I am told that she will be making sure that I have a good support system in place with my family and friends.

 

I know I have good friends who will always be there for me, as I hope I will always be there for them. They make me laugh and make me cry. We talk for hours about everything and anything. And yes, they do get angry with me from time to time and, as I have requested, they let me know when I’m out of line. They take that request very seriously. I have one friend who sings with me and, delightfully, I had numerous friends who offered to continue giving me kisses, even if I drool!

 

I think what scares me the most about this surgery is the fact that it will change me. And hey, I actually like who I am right now! Change might be inevitable, and sometimes life changes happen quickly, but usually the changes in ourselves happen a bit more slowly. I really don’t want ME to change suddenly. I have my own, clear perception of who I am. My appearance is part of that as is the way I walk and talk, the things I like or don’t like, how I respond to other people, and a million other little things. Even my Parkinson’s is part of that. I’ve grown more or less comfortable with my Parkinson’s disease. I know what it does to me and, even if I don’t always enjoy it, at least it’s familiar. It’s part of who I am. Who will I be after the surgery?

 

If this were a decision that just affected me, I might be tempted to just go along and not even consider doing anything more. I’m fine the way I am and, well, if things become harder to deal with, at least it will come on slowly. I’ll get used to it. But, of course, it’s not just all about me. I need to be fair to my husband and my children. I owe it to them to do what I can, and if brain surgery is what it takes for me to continue functioning, stay upright for more years and be more present to my family, then maybe it’s a good thing.

 

Baby steps: I have made one decision. There is a lot I can't control about this, but what I can do, I will.  If I am to have my head shaved, I will begin growing out my hair now. Before the surgery, I will arrange to have my hair braided in lots and lots of tiny braids. Then I will cut them off and create a scarf-with-hair. I know how to do this. If it looks like I need more braids, perhaps I will have a few friends who would be willing to donate a tiny braid or two. Wouldn’t this be cool?! I could have all different colors! I’ll have to ponder this. How does one politely ask for a lock (or a braid) of someone’s hair?

 

For now, however the surgery might change me; I wouldn’t change anything about my life. Despite my Parkinson’s, and in some ways, because of my Parkinson’s, I feel like the luckiest person on the planet. Realistically, whether I have the surgery or not, I will change. That’s just one of those things about being human and being alive. Having Parkinson’s just adds its own quirks. I am so, so lucky. I have my family and the best friends anyone could hope for.

 

But, I think I will borrow that teddy bear, just in case I need it.

Cars, Freedom, and Bear Hugs

Terri Reinhart

Do you remember the freedom you felt when you first got your driver’s license? Now you could go wherever you wanted, when you wanted, and didn’t have to wait for someone to drive you there. Now you could go somewhere all by yourself and be away from the world for awhile. Now you could be independent. Do you remember this?

Me, neither.

We had lots of rules. I was to stay off the highways, not go too far or stay out too late. And I was not to go to any “bad” areas of town. All these rules were pretty easy to follow, especially as we only had one car that was shared between four of us. Mostly I walked. Being free and independent was still a dream.

When I bought my first car, I really savored my independence. I can’t say that, with car payments, insurance, repairs, and gas, I felt free, but I did feel independent. Now, as a stay at home parent, my car is my lifeline. After dropping my daughter off at school, the day is mine. I can shop, visit friends, and go where I want to go. Not that I spend my days shopping and visiting, mind you, it’s just that I know I can.

Considering this, you will understand how scary it was for me the other day when my dystonia kicked in while I was driving. Fortunately, I was on a side road and was able to pull over quickly and park the car. Dystonia causes my body to twist and cramp until my muscles become so tight I want to scream. Usually if I wait it out, after about five or ten minutes it will begin to relax on its own. If I have someone with me and can convince them to help, it’s even better. With Parkinson’s, as with many health issues, there are treatments that tend to be as bad as or worse than the symptoms themselves, but with my dystonia, I’ve found a perfect remedy that is not the least bit unpleasant. If someone is with me and will give me a big, tight bear hug, and just hold me firmly in a hug for a few minutes, the dystonia will not only release, it is also much less likely to come back that day. This is scientific. The calming effects of deep pressure stimulation on the nervous system are well documented.

Dr. Temple Grandin, a University professor from Colorado State University, developed a “Squeeze Machine” (http://www.grandin.com/inc/squeeze.html) to help autistic and hyperactive children to calm their overactive nervous systems. A big, tight, bear hug is a rather primitive squeeze machine, but a simple and available way to get this deep pressure when it is needed.

This time, my dystonia lasted much longer than usual. My arms curled up against my chest, my shoulder blades were convinced they could touch each other if they just tried hard enough, my hands threatened to unscrew themselves from my wrists, my head pulled to one side, and my legs and feet twisted up, too. Not only could I not drive, I could not open the door or even use my cell phone to call for help. For the first ten minutes or so, I was worried that someone might pass by and see me. Granted, if another person helps me out, the dystonia will go away much quicker, but I really didn’t want to ask a stranger to give me a bear hug. If a stranger agreed readily to this, I’d be a bit worried. And I’m not convinced that a police officer would understand, even if I explained all about Dr. Temple Grandin and her work. So, I sat and waited. After 20 minutes, I began to panic. It had never lasted this long before! How long was I going to sit there! Okay, okay, stress makes things worse. Calm down. This won’t last forever.

After 40 minutes, the dystonia finally released, my muscles gradually relaxed, and I was able to drive home. I took my meds and a nap. Then, knowing I would not really get anything productive done at home, I went back out and visited a friend. I did not tell my friend what had happened but I was still very shaky after my experience earlier in the day. I gave my friend a hug and he turned and gave me a funny look. “Come here,” he said, and he put his arm around me, squeezing me tight and just holding me there until I stopped shaking. How did he know what to do? I’m not totally sure, but I know he’s very perceptive and I’m very grateful.

I’ve made some changes in my driving. I've given myself lots of rules.  I will not drive on freeways or anywhere that I can’t pull over easily. I will not drive when my meds have worn off and I will not drive when I’m tired. I’m also doing my homework. Some people with dystonia say that listening to music in the car will help prevent these episodes. My sons have promised to keep me supplied with plenty of music. This should be interesting. Knowing my sons, it could be anything from Classical* to World Music** to Contemporary Music*** to the one and only Christian Football Waltz****.

Maybe bear hugs can be used as a preventative. I think I’ll ask my doctor for a prescription.

----------------------------

*Beatles, Herman’s Hermits

** Schlag mich Baby noch einmal (Hit me baby one more time – The Wise Guys singing the Britney Spear's song - http://www.youtube.com/watch?v=fPxI8yc-YDY)

***Tiger Lillies

****Drop Kick Me Jesus Through the Goalposts of Life – written by Bobby Bare and Shel Silverstein   http://www.bertc.com/subfour/truth/dropkick.htm

 

And Now for Something a Little Different

Terri Reinhart

I was standing at the beginning of the trail, looking down the long and winding road. This was a number of years ago and I was teaching kindergarten. One of my colleagues loved taking the children for long hikes in the mountains and I tagged along. Once there, I knew I was in for a challenge. Walking is not my forte. But before I knew it, one of the dads was standing beside me, waiting. “I want to hold your hand”, he informed me. I knew that he didn’t have any romantic intentions. He would just be there if I fell. I did alright, with a little help from my friend, until we came to a hill. I slipped a little and thought to myself, “Please, hold me tight! Don’t let me down!” Another parent held on to my other arm and the three of us made it down the hill together. “I’m glad you’ve really got a hold on me!” I said. “I thought I was sure to fall.”

We also went to the Berry Patch Farm every year to pick raspberries and strawberries. It is a large farm and by noon, I felt as though I had been walking through strawberry fields forever.

Two summers ago, I decided to go to the Renaissance Festival with my family. I should have known better. After walking here, there, and everywhere, I wondered out loud whether they would sell me a ticket to ride in one of the horse drawn wagons. That was a big mistake. My daughter began chanting “Bring out your dead. Bring out your dead.” I informed her that I was not yet dead.

Some days, it’s all too much.

It’s getting better, partly due to the leg braces that were suggested by my physical therapist. But I’ve learned something else, too. Music can be magical in helping me to move. Usually, my speed is that of a geriatric turtle, but if I am listening to music that is rhythmic, my legs tend to follow along. If the music is faster, my walking will be, too. The therapist suggested listening to music with headphones, but then I tend to not pay enough attention to what I am doing and I walk into walls. I f I’m going to walk into walls, I’d rather slow down. So I try to just sing quietly to myself.

The only problem is, I can’t think of any songs.

(my apologies to the Beatles, Monty Python, and Mark Gordon)