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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.

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.