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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.

Please wait till the ride comes to a complete stop

Terri Reinhart

"Bienvenue! Willkomen! Croeso! Welcome to the new triple loop roller coaster! Please take your seats, make sure the safety belt is fastened properly and the safety bar is secure. Keep hands and feet inside the car at all times and do not attempt to exit until the ride comes to a complete stop. Enjoy the ride, folks!"

I braced myself and already felt a little queasy. It was anticipation, I'm sure, but my tummy wasn't listening to the voice of reason. It was listening to the ride operator... and the ride operator was simply my brain's translation of the far more reasonable voice of my doctor saying, "I wrote you a prescription for a new medication."

My usual response of "How normal do I have to be?" didn't work this time. After several recent experiences with headache, nausea, dyskinesia, and full dystonic storm hitting all at once, I wasn't in a position to argue. Being a wee bit testy, I let her know I wasn't thrilled about adding any new drugs, but I'd be a good patient and do whatever she wanted me to do. Grrr. I didn't have to be happy about it. 

The next morning, I took my regular meds and my new one, got on the roller coaster and hung on tight. Who knew what thrills and chills awaited me? The ride promised at least some relief from dyskinesias, the rolling-won't-stop involuntary movements often associated with having been on levodopa for a number of years, and extend the time when my regular meds were "on".  I already knew the twists and turns on this ride could include purple blotches on my legs and ankles, weight loss, and dizziness. So far, it sounded not unlike a few of my rides on old wooden roller coasters when I was in high school. My husband was on standby in case anything went wrong.

Mostly I wanted to make sure I kept breathing. Like I've said before, my docs know I'm somewhat paranoid about drugs. I'm ultra sensitive to most of them. And when I mean ultra sensitive, I mean like, my docs may seem to take me seriously, but it's only when they see for themselves what can happen, that they suddenly look panicked and proclaim me the most medication sensitive person they've ever seen. 

Yeah. I got it. 

So, back to the ride: husband on standby, bracing myself....

I fell asleep.

All that anticipation. All the nervousness, nailbiting, and worry. I slept for 2 hours. Then I got up, spacey, a little dizzy, and wandered, unfocused, around the house for awhile. Then I fell asleep again. Fortunately, husband on standby had also thought to make a big pot of stew in the crockpot earlier in the week. I didn't have to make dinner. Wasn't hungry, either. After a little stew broth and some bread and butter, I took another nap before going to bed. It hadn't been a very exciting ride.

That was yesterday. I only took two real naps today - and a short cat nap. The rest of the time I've felt scattered and bored silly. Not enough stamina to do anything, but tired of being scattered and tired of sleeping away the day. We'll see how my body adjusts over the next few weeks. My doc says to be patient. I said something else. 

In the meantime, I'm fairly easy on my husband. I sleep a lot and don't eat much. I'm not the best company, but at least I don't scratch up the furniture and I don't shed.

The ride's not over yet.