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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.

Filtering by Category: deep brain stimulation

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’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.



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.