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!