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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.

Irregular Doctor, Injured Neurologist

Terri Reinhart

It was a dark and stormy night. I always wanted to start a story this way. Of course, it was only dark outside and the storms were all inside, a result of my dystonia, but it still works.  

Yesterday, I ran errands for my parents all morning. I picked up their prescriptions at Kaiser, over the counter meds at another store, made phone calls, delivered all their meds to the nurse at their facility, and visited with my folks for awhile. I knew I was on the edge because my Parkinson’s meds hadn’t been working well for me for a couple of days and I had woken up with a bit of a headache. But, my parent's medicines needed to be picked up and delivered.

By the time I got home at 2, my head was pounding and I was a little queasy. So, no lunch for me. I made some chamomile tea and sipped it. It just made me more queasy. I went to bed, but couldn’t get comfortable. There was no way I could take my Parkinson’s meds when I was having to trot back and forth between bathroom and bedroom all day. About 5 pm, my dystonia took over and by 8, the pain of the headache and queasiness combined with total body dystonia was more than I could handle. We were off to the ER. By the time we got there, my arms were twisted and pinned to my chest with muscle spasms and my legs were twisted and crossed and my feet were curled up with painful cramping. I was hyperventilating and dehydrated and in full dystonic storm. It took two men to pick me up and put me on the bed.

Long story, much shortened (8 hrs in ER), I was pumped full of various drugs, the combination of which caused me to suddenly have severe restless, jumpy legs. More drugs. Finally started to settle down and we got home at 3:30 am. By then I could walk, though I was very shaky and dizzy from the meds and from my involuntary triathlon – headache, nausea, and dystonia. At least I got a fairly decent involuntary abs workout. Thankfully, these ER docs seemed to be very knowledgeable about dystonia.

Dystonia is hard to explain. Much of the time, I look sorta kinda normal - or at least my normal. Other times, my arms or feet will twist and cramp. It's the Twist and Shout part of my Parkinson's.  A major whole body episode of dystonia is called a dystonic storm. When certain things start lining up, ie: needing sleep, too much to do, eating the Oreo cookies and chocolate bars my dad loves to give me, and waking up with a headache, I have to be very careful. This is the time when I'm most likely to have more Parkinson's symptoms and I'm more at risk for having one of the dystonic storms take hold. Pacing myself is never easy.

I’m still shaky today and so, so grateful for my husband, who put on his caregiver hat and took care of me all night.  He got less sleep than I did.

As a funny side note, the medical report must have been transcribed by some automatic voice to text program. It told me to “follow up with irregular doctor injured neurologist”. It took me a few minutes to figure out what it meant! I told my irregular doctor and injured neurologist not to take it personally.