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!

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.

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

*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

Alternative Energy to Power DBS Pacemaker

Patrick is working on his alternative energy drawings for the DBS Pacemaker.  And his first one is below!

As a teaser, you might want to think about these other possibilities:

Solar power : Perhaps a solar panel on top of our heads?

Wind power : We could bring back the old propeller beanie caps, only with a wind turbine for harnessing the wind power.

Stationery bicycle power : If they can power a blender this way, we should be able to power ourselves, too. After all, exercise is good for us, right? What better motivation to keep exercising?

Long extension cord to recharge at night ? Or, as Patrick's picture shows, in a pinch plug ourselves in during the day. The Frankenstein bolts on the sides of our neck might have to become standard.

Zipper closure where the pacemaker is inserted so patient can change battery : Hey, if I run down, it would be nice to just stop and pick up a spare battery.

Jumper cables to hook onto another person with DBS or other power source : Just on the off chance that you do run down in the middle of nowhere but have another source of power, could we jump start?

Shut mom down now and then to conserve ener g y : Don't say it. Mom already shuts down now and then to conserve energy.

And, if replacing batteries is too much of a hassle:

Craig’s list or Ebay: “One mom, well used, batteries not included.”

More pictures from Patrick to come. I've bribed him with chocolate chip cookies.

Patrick on the Job

Alternative Energy

Alternative Energy 07/14/08

My friend Kate wrote to me the other day. She and her husband have been planning a trip to Alaska and have been eagerly looking forward to this holiday. But a small glitch has come up. It seems that Kate’s battery is wearing out and she is afraid of what might happen if it wears out while they are away. Kate had Deep Brain Stimulation surgery 3 years ago. Though it took some time to find the right settings, this has ultimately proved to be a very successful treatment for her. She taking less medications for her Parkinson’s disease and she is functioning much better than she had on just medications alone.

Deep Brain Stimulation is a surgical treatment that involves implanting a “brain pacemaker” which sends electrical impulses to specific parts of the brain to block the impulses that cause symptoms such as tremor, dystonia, or chronic pain. Though not without risks, most people have said that they have significant improvement with the DBS surgery. The risks are those that one would expect from any surgery that includes placing electrodes in the brain – the possibility of infection or bleeding, cognitive or personality changes, seizures, death, and the ability to pick up radio stations from Taiwan . On a “ WebMD ” page, I found a statement that I found puzzling. In describing the disadvantages of DBS surgery, it said, “Device may interfere with antitheft devices and refrigerator door magnets.”

I’m already compiling my list of questions to ask my doctor.

Then there’s the battery thing. When the battery runs down, you can have quite a sudden “off” period. When you’re taking meds for Parkinson’s, you find out quickly what “ons” and “offs” are like. When I am on, I feel mostly normal. I can walk and talk and do most everything I need to do. When I am off, all hell breaks loose. A friend of mine put it well. He said that I looked like a marionette with a sadistic puppeteer. My arms and legs just don’t want to listen to instructions. And if I’m not twisting all over, then suddenly I’m on total slow motion mode and have trouble moving and speaking. One day I overslept and my meds wore off completely and totally. I couldn’t get out of bed by myself. What I am told is that when the DBS battery wears down, you can suddenly go from being active to being bedridden in a very short bit of time.

My doctor has already has told me that DBS is probably in my future. If I’m going to run on batteries some day, I need to check this out. The batteries in the pacemaker are supposed to last anywhere from three to five years. Then they will need to be replaced, which requires a surgical procedure. This is why Kate is a bit worried about having her batteries run out in Alaska . It’s not as though you can just go to your local Walmart and pick up some spares. Hopefully she’ll be able to schedule this surgery before they leave on their trip. If not, well… we had a little bit of fun contemplating the possibilities. Hotwiring is probably out. Can you jump start a brain pacemaker?

Our family is interested in alternative energy sources. Our oldest son converted his 1981 Mercedes diesel car to run on vegetable oil. A friend put solar panels on his house and got a small three wheeled electric car. To recharge the car, he just plugs it in to the household current, which, of course, is being powered by solar energy. I am putting my laundry out on the clothesline and growing my own food. We even have a compost bin.

Could there be an alternative way to power the pacemaker? What might that look like? I enlisted my family’s help. First, we came up with as many ideas as possible. Then, I left this in my son’s capable hands.

(to be continued...)

~Since this was written, Kate was able to get her battery replaced.  She can breathe out and enjoy her trip to Alaska!  But the research will continue! 

And, Kate, I hope you will bring back some good stories!  http://katekelsall.typepad.com/my_weblog 

In Good Times and In Bad

7/10/08

My oldest son called a week ago with the wonderful news that he and his fiancé were married – last March! We were delighted! We adore his wife and feel that she became a part of our family from the first moment when she arrived in Denver. We weren’t particularly surprised that they were married as they had talked about this possibility with us early in March. Being married solves some logistical issues about things such as health insurance. Planning a wedding was not practical at this time either. They were both finishing their master’s theses.

It’s easy to get married in Colorado now. Just fill in the form at the proper city office, show your ID and pay $10.00 for the marriage license. No Court Justice, minister, or priest is needed. A couple can “solemnize” their own marriage or have someone who is special to them be the person to solemnize their marriage. Personally, I think this is lovely!

It made me think of our wedding. Chris and I were married on May 5, 1979, in a little church in Buffalo Creek, Colorado. It was a very simple wedding and everyone said it was beautiful. I’ll take their word for it. One of my favorite memories was that so much of the wedding itself ended up being wedding gifts from friends. The cake was provided by a friend who loved to bake. My sister made my dress. Another friend made banners to hang in the church. I went to purchase a wedding cross for the top of the cake and the owners of the store, who knew our family well, wrapped it up and gave it to us at no charge. Even our honeymoon was a wedding present! We stayed in a tree house in Deer Creek Canyon that was built by our friend, Fr. Roger Mollison, the man who introduced us and, when we were engaged, laughingly told everyone that we were going to “commit” matrimony. This gift was a mixed blessing, however, as it snowed just three days after our wedding.

We also wrote our own vows. Looking back on them now, I realize that they really weren’t all that different from the traditional vows. We included the classic “in sickness and in health, in good times and in bad”, etc. I think that was required.

These are good vows, of course, but somewhat vague. I mean, what constitutes good times or bad times? What kind of sickness are we talking about? Did we realize that we were signing up for things like being thrown up on by small children at all hours of the night? And, of course, Chris didn’t know that that he was signing up to have a wife with Parkinson’s disease. I think if we had to write vows today, I’d add a few things. To be fair and protect the innocent (me), I will make these a bit more generic and add a few suggestions that I’ve received from friends. If you see any resemblance to your own story, it could be you.

Do you take me to be your lawfully wedded husband/wife, to have and to hold, to love and to cherish even when:

~I haven't had much sleep and haven't had the chance to shower for days?

~the house is filled with children's toys, dirty laundry, and a layer of dust that could serve as insullation?

~there is wet, dyed wool hanging in the bathroom shower, making the entire house smell like wet dog and turning the bathtub a lovely shade of purple?

~the house smells like a brewery and sounds like a rumbly tummy because there is homebrew beer fermenting in the dining room?

~the keys are locked in the car and you come all the way across town to the rescue, only to find out that the car window had been open the whole time?

~quality time together means eating at the hospital cafeteria while our child is in surgery, making valentines for our child’s kindergarten class, or watching a Little League baseball game?

~I forget to take my meds and suddenly look like a marionette with an out of control puppeteer? Or can’t get out of bed without help?

~there have been car parts or bicycle parts or plumbing parts on the living room floor for the last two weeks?

~dinner is the “chef’s surprise” and should be labeled “Eat at your own risk.”?

It’s probably good that the vows we make are a bit vague. I certainly wouldn’t have wanted to know too much about what would happen or could happen. The one thing that we do know is that when we make those vows, it’s not “all about me” anymore. It’s all about WE. And it’s really not about the easy times. It’s about those times when we stumble and fall. It is when we need our partner to help us up or we need to help our partner up, even when we don’t especially feel like doing it.

Do we still promise to love and cherish each other at those times? Would we still make those vows, knowing now what it is that we’ve signed up for?

I do.

And Now for Something a Little Different

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)