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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.

Whistling in the Dark

Terri Reinhart

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.