The Show Must Go On

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

Mercury

When I was in high school, I remember being told that I should enjoy those years while they last because they were the best years of my life. As a teenager, that was the most depressing bit of news I could ever imagine. Those were the BEST years of my life? Really? Thankfully, I learned that it wasn’t true at all. Since then, every day and in every way, it’s gotten better and better. The last few years have been wonderful and, in fact, yesterday was a particularly good day. Yesterday I discovered that, when you are out of chocolate syrup, a small amount of Bailey’s on vanilla ice cream is a decent substitute.

When I have an off day, there’s usually a reasonable explanation for it. I can blame my Parkinson’s or my medication, or something even more obvious: either I had to wait in line at the bank, or my husband decided to make lima beans for dinner. When I was teaching, the off days usually had to do with the behavior of the children. As a conscientious teacher, I would take this personally and decide that I had certainly done something wrong. After all, if the teacher is doing their job properly, the children will behave, right?  There were times when I would be ready to commit myself to the nearest sanitarium (the one with very quiet, private, padded rooms) after 45 minutes of playground duty. After a rant to my assistant teacher, she would look at me understandingly; shake her head, and say, “Mercury is in retrograde, you know.” I would smile and nod, as if I knew exactly what Mercury was up to and why it’s decision to retrograde would have such a disastrous effect on young children.

On the whole, however, I have good days. If I have an off day, I take it personally. I must be doing something wrong. If I’m doing my job properly, the day should go just fine, right?

Recently, I offered to puppysit. I don’t have grandchildren yet, I have grandpuppies. My son and daughter-in-law have two beautiful lab puppies, one black and one chocolate. Rufus and Mosie are as delightful and curious as a couple of young children and just as mischievous. The nice thing is that they can occasionally be put in their kennel for nap time. I can even leave them there and go shopping. You can’t do that with grandchildren.

I had forgotten that I had an appointment for an MRI at the hospital that morning. I didn’t panic. The MRI was only supposed to take 30 minutes. I would have plenty of time to get home, feed the puppies, and take them for a walk, before delivering them back to my son and going to my own class that afternoon. Everything would be fine. Besides, my younger son was home that morning and even if he didn’t really like being woken up at the ungodly hour of 11 am, if the puppies needed something, he was there. He needed to be at his class by 2 pm. No problem. I was sure everything would go smoothly.

I waited over an hour at the hospital. I called and let the school know I’d be late. Then I phoned my son to see how everything was going. It seemed the puppies had gotten sick on the rug and peed in the house numerous times. He had spent the whole time cleaning up after them.  When would I be home? If I didn’t come home soon, he’d miss his bus for school.

In other words, all was well.

I was finally brought in for my MRI. I’ve never quite understood why I haven’t received any superhuman powers yet. I’ve been exposed to magnetic fields, plenty of radiation, and had radioactive dye injected directly into my veins. But I have yet to leap tall buildings with a single bound, turn invisible, or even stretch my arms from the dining room to the refrigerator. What I do instead, is turn into the human pretzel. Somehow the MRI machine triggered my dystonia big time. My arms and legs twisted up so badly after the test, that I could barely make it to the wheelchair, where I was invited to sit while they wheeled me directly to my car in the parking lot. I’m not sure exactly why they thought I was in any shape to drive, but they left me at my car. I sat in the car for a while, waiting for my arms and legs to straighten out again.

Somehow I then managed to drive home, put the puppies in their kennel, put my son in the passenger seat, drive him to his school, and deliver the puppies to my other son. I was very late for my class and, by the time I showed up, half the students had given up on me and left. I was ready for that quiet, padded room.

I'll bet that darn Mercury was up to something. 

Experimenting

During my last two years of teaching, I had a lovely assistant teacher who was also an aromatherapist. I swear she kept me upright during those two years. She would often take just one look at me as I walked into the room and then go to her supply of oils, bringing one out for me to smell or to put a drop onto my tongue. Mostly, this was a pretty non-invasive way of dealing with my challenges, and it worked! I was able to get through those years as my Parkinson’s was starting to take hold of me more and more.

April was also an amazing cook and I include her oat porridge as one of the most delightful of her aroma therapies. She was responsible for baking bread with the children every week and when it was ready, she would mix real butter and a little bit of vanilla extract to make a spread that was unbelievably good. I gained about 10 lbs over the two years we worked together. The kindergarten children, who are notoriously picky eaters, would ask for seconds and thirds of nearly everything.

However, I didn’t wholeheartedly endorse everything she put before me. Generally speaking, most of what she gave to me was exquisitely good, which meant that I forgot to be careful. Yerba Matte is a tea that is popular in South America. The South Americans, I believe someone once told me, load this tea with sugar and milk before they ever risk having it touch their taste buds. I will admit, my experience with it was brief. One taste of this incredibly bitter beverage and I felt like spitting it across the room. I didn’t do that, however, because that would be unbecoming in a kindergarten teacher. Instead, I made such a face that I am still teased about it.

Similarly, I have learned to appreciate April’s hot cocoa with red pepper added to it.  It's good, as long as there's not too much pepper! I’ve had to experiment. My first try resulted in my suddenly being unable to breathe as the pepper attacked my tongue and throat. I coughed and spluttered, with tears running down my face. It took awhile to find the proper dose. Further experimenting with another remedy, peppermint oil, taught me to not put an entire drop of this oil on my tongue. It yielded another coughing fit and I felt I was breathing clouds of peppermint as a dragon breathes fire. A tiny amount can work wonders. Finding the right dose is pretty important.

I have had to learn to be cautious about my medications, too. I had tried dopamine agonists in the past and have had pretty dramatic side effects, so when my doctor suggested I try another one, I wasn’t sure I wanted to. But this particular medication, Requip XL, is a little different. For one thing, you just take it once a day. It is a controlled release drug and doesn’t have nearly the side effects that the regular drug has. I decided to give it a go. My doctor and I began a week of experimenting with different combinations and dosages of the drugs.

After this week, I can say, without a doubt, that I can’t imagine anyone willingly experimenting with drugs of any type.

The first day, I spent flat on my back. I felt miserable, like I had the flu. The next day, something else happened. We finally figured out that the Requip was suddenly working so well that I had essentially overdosed on Sinemet (carbadopa/levadopa), and I was having "dykinesias" or involuntary muscle movements. This sounds pretty harmless but what this meant for me was that I literally could not be still. My heart was racing, my left arm and was moving around in a rhythmic pattern, my body was rocking back and forth, and I started having some strange obsessive/compulsive behavior.

In this rather manic state that I was in, I could suddenly see clearly, in every minute detail, everything that I needed to get done that week. I went around the house gathering all the supplies and materials for the crafts that needed to be finished for the craft fair that weekend. I put them all in our dining room, on the table, the chairs, and on the floor. I couldn’t stop! I also couldn’t be still long enough to actually do any craft work. I was exhausted and miserable. When I drove to school to pick up my daugther, the dyskinesias were still there, though milder. At least I could have music playing loudly in the car so that, if anyone saw me moving about, they might just think I’m attempting to move to the music.

By now, we’ve done enough experimenting that things are leveling out again. I can take the Requip as long as I cut the dose of Sinemet in half. I have had three days now where my dystonia has been kept to a minimum and I have had very little in the way of dyskinesias. I get queasy on and off during the day, but not enough to stop me from doing what I need to do. There are still some “off times“ and I still have some dystonia, but it has become more manageable. For now, the experiment has paid off.

My health is a bit more stable and the side effects aren’t nearly as bad as the Yerba Matte. 

Whistling in the Dark

Writing with tongue firmly in cheek is my way of whistling in the dark, of making light of something that is just a little scary. And it helps a lot! Especially as I tend to have a very vivid imagination, especially when it comes to imagining the worst case scenarios. Part of this is because I have children. I don’t think I’m alone when it comes to this. Most moms I know have a unique ability to imagine all sorts of dire happenings, every time their child walks out the door. I read a few of the Series of Unfortunate Events by Lemony Snicket, and I have to say that he has nothing on the typical mom. As soon as one of my children, or my husband, would be five minutes late coming home, I just knew it was because they had been stolen away by aliens – or something like that.

And moms can even worry in retrospect. When my son told me that he had been swimming across the Connecticut River, I was horrified. Didn’t he know how wide that river is? He could have drowned, or been eaten by crocodiles, or caught some strange river water disease. It doesn’t just apply to children, either. A friend of mine is a retired fireman. I never thought a lot about what firefighters do, until I had this friend. Then he started to tell me stories. I actually had nightmares! I had to remind myself, over and over, that he isn’t doing that anymore. I don’t really have to worry about him going into burning buildings to rescue people. He’s retired. He’s okay.

Putting aside my “whistling in the dark” for a few moments, I would like to share with you a list of questions, real questions, which were generated by my husband, my friends, and me, to take to the appointment with the neurosurgeon this week. They were extremely helpful. Thanks to Daemon and Di and Mark for your help and support. And special thanks to Di and Maggie for phoning from Australia the night before my appointment to wish me well!

Here are the questions:

•1. What is the incidence of CVA or any intracranial hemorrhage either during surgery or post-operatively?

•2. What is the likelihood of speech difficulties due to involvement of / or damage to either Broca's area or Wernicke's area during the surgery?

•3. What is the likelihood of personality changes developing post-operatively?

•4. What is the likelihood of developing severe depression or depressive illness post-operatively?

•5. What changes can I expect in my metabolism after the surgery and what can I do to correct that?

•6. Are there cognitive changes that are expected after the surgery, such as short term memory issues or challenges with ability to focus? Are any of these changes permanent?

•7. What is the likelihood of developing obsessive/compulsive behaviors after the surgery?

•8. What are the “significant mood changes” that are talked about in regards to recovering from this procedure? Are these changes significant enough to warrant medication?

•9. How many hospital stays does this require? How long will the stays typically be?

•10. How many surgical procedures all in all – typically?

•11. How long does the surgery take?

•12. What symptoms will this treat?

•13. What symptoms will this NOT treat?

•14. How long has this surgery been performed?

•15. Are there any negative effects from the surgery that are now being seen with people who had the surgery early on?

The surgeon with whom we spoke, was very honest. I won’t go into all the answers that he gave to our questions but one of them I will address. It seems that speech difficulties after DBS surgery are very common. The doctor told us that the area of the brain that is stimulated is very close to the speech centers in the brain. Therefore, they also receive some stimulation, just because they are there. This can have a negative effect on speech, making words slur together. The worst case scenario with speech, he told us, would be that I might have to choose, at any one time, whether I wanted to walk, or talk. Turn the stimulator on to walk. Turn it off to talk. It comes with a handy-dandy remote control. No way would my husband or daughter be allowed access to this!!

The good news is that for people who have had the surgery, it seems as though it works well for a long time. Our doctor wouldn’t go so far as to say it is neuro-protective but he did say it masks the symptoms well for a long time. I am still very unsure about this. I won’t know until next February or March whether they feel I am a good candidate or not, but meanwhile, I am going through all the preparatory appointments to get ready for it. By the time they decide whether I am a good candidate, they will also be ready to get out the surgery scheduling book.

I do know that, if I have this surgery, I am lucky to have a team of incredible doctors.  We were very impressed with the surgeon, Dr. Ojemann, and I know that my neurologist, Dr. Klepitskaya, is considered the "Queen of DBS Programming".   But I’m glad I don’t have to decide now. For the next few weeks, I think I’ll take a holiday and not think of anything medical.  

And I’ll go back to whistling.

Teddy Bears

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.

Teaching Opportunity

The other day, I was sitting on the kindergarten playground and talking with one of my former colleagues. I enjoy visiting the kindergarten playground. It always reminds me that I am happily retired now and I’m not responsible for watching the children. I don’t have to respond when a child starts to cry or goes over and bops another child. I don’t have to help change wet pants and no one has thrown up on me in over a year.

I sat on a small kindergarten sized chair and watched the children play. Then little Matthew came up to me and asked me about my feet. Could I walk? Why did I have those things on my legs? Why did I need help standing up? Why was I sitting in the chair that HE wanted to play with? He had a seemingly endless number of questions.

These are moments when I really do miss being with young children. They are so open. They don’t hedge around anything; they just say it like it is. If they have a question, they ask. They don’t worry about whether it’s going to embarrass the other person, they just ask. And they do things, too. Whether it’s jumping off the swings, pouring sand down their pants, or letting their teacher know that, “My mom is lots prettier than you are,” they are adventurous, curious, and honest.

Young children have very interesting points of view, too, and they are quite willing to talk about complex topics such as religion, death, and procreation. I have learned from kindergarten children that Jesus was the only person who knew how to tie his shoes when he was born. I also learned that only God can count to infinity. One child announced to us all that his baby sister “got hatched out just four months ago”.

There are always those moments, too, that we call our “teaching opportunities”. Much more important, in my mind, than learning how to read or count, these are the moments when teachers are called on to be creative. A child gets angry and hurts another child, unintentionally. A parent in the class has a miscarriage or a grandparent dies. A new baby has arrived in another family. Rowdy play results in broken toys or torn play cloths. As a teacher, I often told stories at these moments. Stories are magical and healing and intensely comforting. I loved telling stories, even the very short ones that helped the children to settle down at the snack table. To tell a story to a child when there has been a death in their family or when a new baby arrived was a privilege that I took very seriously. I would talk with the parents first and often the parents would join us for this special story. We would even decorate a candle and light it before the story began.

Every good teacher knows, however, that it is never just the students who are learning. In all my years in the kindergarten, I know that the children taught me far more than I ever taught them. And my visit to the kindergarten playground the other day was no exception! Here little Matthew was asking questions, waiting for me to share my wisdom with him. I was ready. I figure I’m old enough now to have vast stores of wisdom just waiting to be imparted to the younger generation. I told him that I wear braces on my legs because my feet often just forget which direction they are supposed to be pointing and then they make me walk funny.

Matthew looked at me for a moment and then looked at his own feet. “I’ll show you how,” he said, very seriously. “Just put your feet like this, see?” he continued, gesturing downward to show me that his feet were pointed forward. “Make sure they are going this way and then you just walk. Like this. Watch me.” And he very carefully and deliberately walked back and forth across the playground, explaining to me all the way how I could do it, too. “Do it like this, Mrs. Reinhart, and then your feet will take you anywhere you want them to.”

Being a retired Kindergarten teacher is a little like being a grandmother. You can visit and reap all the wonderful benefits of being with the children and let the teacher handle all the challenges. And the children are still teaching me more than I could ever teach them.

“That’s right, Mrs. Reinhart! Just like this, just do it like this and you’ll be able to go anywhere you want!”

Thanks, Matthew!

Confetti

It has taken awhile to really get into the new school year. I don't like getting up early and the first weeks were a bit of a shock.  Until I got used to it, I was pretty grumpy. Sometimes I even growled and snarled at my family. My daughter is much like me, so she growled and snarled right back. I had just really gotten into summer.  It was comfortable.  I wasn't ready for anything to change.  But, after a few weeks, we got into the rhythm and it just became the new “normal” routine. And I even enjoy it! Now that I am home during the day, I have time to myself, something that has always been a luxury. When summer starts again, it will be a shock to have everyone home again.

It seems this is something I can’t avoid. Whenever I find myself just getting comfortable, something comes along and changes. I barely got comfortable being married and suddenly, just like that, we were parents. I just got used to taking care of a baby, and, what do you know? The kid started to walk.

Nearly thirty years later, I can look back on all sorts of readjustment times in our family:  three children, a foster son, three foster adults, job changes, and a move across town.  And if this wasn’t enough, I was also crazy enough to insist that we have animals. Not just your average puppy or kitten; we’ve had chickens, ducks, geese, goats, rabbits, dogs, cats, guinea pigs, rats, hamsters, gerbils, fish, and a miniature donkey.

Oddly enough, the most difficult pets were the gerbils. We bought one of those colorful, plastic, expensive cages with the tubes going this way and that so they could exercise. The blasted things ate their cage. First the platforms went, chewed to confetti sized bits of colored plastic. Then together, they took down the wheel and started eating that, too. When they started in on the tubes, I put them in a glass aquarium with a top. I confess that when the first one died, my immediate reaction was, “One down, two to go.”

The adjustment to life without gerbils wasn’t too difficult.  The major changes, however, always made it feel as if our old lives had suddenly been chopped into confetti bits, too, and then thrown up in the air. When they landed, we had to try to fit all the pieces back together again. No way was it going to look the same as it had before!   What would the puzzle look like when we got it together? Would our marriage be the same? How would we all fit together as a family?

I’ve found that it’s much easier to think about these kinds of questions if I am eating chocolate chip cookies at the same time. It takes the edge off.

Our marriage would never be the same as it was before we had children. We had to step back and pick up all those little pieces of our lives. In fact, there seemed to be lots more little pieces of our lives. They included legos, matchbox cars, puzzle pieces, children’s books, and bits of unfinished peanut butter and honey sandwiches that inevitably got stuck between the couch cushions or left where we couldn’t help but step on them. Figuring out how we were going to take care of our children, remain sane, and keep the house relatively clean, as well as earn an income, took up most of our time and energy. Finding time to be together as a couple wasn’t easy, but it did make us feel young again. In fact, in trying to steal a few moments of intimate time, we often felt like teenagers trying to get away with something.

It's really okay.  Change is okay.  If we didn't have these shocks to our system to keep us awake and alert, we'd probably end up pretty boring.  It's a way to recreate our lives, renewing ourselves over and over again.  It's a challenge but a good challenge.  It's time to pick up the pieces, put our lives together, and figure out how to live in a new way. 

As we’ve gotten older, it’s been easier to make these adjustments to the various changes in our lives. We’re pros after all. We’ve been through this a lot. But the changes in our lives are a little different now. We don’t have my husband’s parents with us anymore. We miss them very much. Our sons have grown, gone to college, and come home. Our oldest son is now married and we have a beautiful daughter-in-law.  Our daughter is starting high school.  I have retired from teaching and am learning how to manage the ups and downs of my Parkinson’s disease. My husband would love to retire and he is also learning how to manage the ups and downs of my Parkinson’s disease.

And, just in case I forget that I am getting a little bit older, my doctor’s office is there to remind me. I got a call from them the other day reminding me to make appointments for a mammogram, a pap test, a well woman exam, and a colonoscopy.  Any buy one get one free specials?  I told them I'd call them back.  Then two days ago, my neurologist suggested brain surgery. 

Okay, it’s Deep Brain Stimulation surgery, the ultimate in new treatments for Parkinson’s disease. But it’s still brain surgery. I figure there’s a reason we have a hard, thick skull around our brains. We’re not really supposed to mess with anything up there. But, in the long run, this might just be what I need to do. In the short run, having this decision to make has thrown my life up in the air in little confetti bits again. I’m still waiting for them to come down.

While I’m waiting, I think I’ll have some more chocolate chip cookies. *

*may substitute glass of Bailey's Irish Creme and/or watching Eddie Izzard comedy videos

Cars, Freedom, and Bear Hugs

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.

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*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