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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.

Alternative Energy

Terri Reinhart

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!