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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.


Terri Reinhart

It was at the end of our yoga class a couple of weeks ago. Everyone in the room was relaxing in our favorite pose: Savasana. After our workout, it's wonderful to just lie still for awhile. It's an important time, too, according to our teacher, Paul Zeiger. This is when our body has a chance to process all the work we've just done. Our class is good at this. After a couple of minutes, at least one person was snoring. My attempt to relax wasn't going so well. By the time Paul had turned off the lights, I could feel my left hand start to curl up. By the time he turned the lights on again, I had turned into a human pretzel. Both of my arms were curled tightly against my chest, my feet were curling and cramping, and my legs were crossed. I couldn't move.

Literally, savasana means “corpse pose”. I was in “rigor mortis” pose.

This has been happening more often than I'd like. To be honest, I would prefer it not to happen at all, but my body stopped listening to my preferences when I was a teenager and wanted long, thick, wavy hair and larger breasts. It certainly isn't listening to me now that Medicare has stopped paying for two of my medications. When I hit the prescription drug gap, it was like hitting a brick wall. I explored my options but couldn't afford them. I decided to slowly go off these drugs completely. What's the use of taking them at all if I can only have them half the year?

There were two immediate consequences of going off the meds. I lost 8 pounds in the first three weeks and, as certain behavior tendencies started to drop away, I realized that the effects of these drugs did more than help with my Parkinson's. I was no longer stopping at Safeway and picking up chocolate eclairs to eat in the car and baking cookies and pies every week. Of course, the physical symptoms the meds had controlled also started up again with a vengeance. My mood wasn't so good, either. I was starting to feel depressed.

I decided to look at the connections between Parkinson's medications and their effect on mood and behavior. Not enough Dopamine in your system and the communication between the brain and the muscles breaks down. It can also cause depression, over and above the normal depressing feeling of having the communication system fail and your limbs refusing to take orders. I have to consciously think about things that I used to do without thinking, like blinking my eyes. Then again, a little too much Dopamine in your system and you're at risk for obsessive/compulsive/impulsive behavior and dyskinesias; in other words, not having total control over your thoughts and actions.

This has made me think a lot about who I am. It's a little like the game of peek-a-boo that I play with our grandson. “Where's Mattheus?” I say, looking around the room. When our eyes meet, he starts to giggle. “There he is!” I exclaim as he runs into my arms for a hug. Lately, I've been trying to look through all the complex chemical and electroneurological reactions that control our personalities and moods and wondering, “Where am I? Where is Terri in all of this?” It's a strange game of peek-a-boo and I'm trying to catch a glimpse of myself.

Am I the manic-depressive wife who alternates between working non-stop on my craft projects and then crashing for several days at a time? Am I a needy person who, at times, depends too much on my friends? Am I the neglectful daughter who should be taking better care of my parents? Am I trying so hard to control my physical body that I end up trying to control everything and everybody in my life? Am I an awful person? Do I need more dopamine? 

In the midst of this self-flaggelation, there were three friends of mine who stepped up, out of the blue, to let me know that I had been a role model to them. None of them knew what I was going through. They were each from a different part of the country, too, and didn't know each other. It was humbling. My first reaction was to feel ashamed. Why would anyone choose me as a role model; especially now? Each one, however, had gone into some detail as to why they chose me. I could't argue back. I was forced to conclude that I must not be all bad.

It's terribly humbling to have to take a good, hard look at myself and embrace both the good and the "needs improvement" parts of me, those aspects that I find hard to love. Yes I am all those people I described and probably more as well; which is to say, I am human and fallible and complicated.  Knowing this is one thing, believing in myself is quite another altogether.

The experience in my yoga class the other week was a good exercise. Lying on the floor, all twisted up, I didn't want to disturb anyone else. I didn't say anything and wasn't noticed till the lights came on. I knew exactly when my teacher saw me when I heard him say, “Hmm.” He found it interesting. He finds everything interesting.  He came to help and that alerted Chris to what was going on.  The good exercise part of this was that, until Chris came to my rescue and helped me to gradually straighten my twisted arms and legs, I managed somehow, even in pretzel form with my feet painfully cramped, to find that inner quiet and peace. It's an experience I'll never forget. 

I was able to say to myself, “Here, I am.”