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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.

A New Rating Scale For Parkinson's Disease

Terri Reinhart

According to the “Classical PD Timeline: Onset to Death” chart I found on the website of the Rocky Mountain Movement Disorder Center, I'm in trouble. My clinical symptoms showed up 13 years ago, which means I am somewhere in between Hoehn & Yahr stage III (Poor Balance) and H & Y stage IV (Fall, Dependency, Cognitive Decline). The fact that I fell on Christmas eve while getting ready for family to come doesn't help.

While I understand this chart shows a common pattern of PD and is not meant to strictly show what an individual will go through, I also understand how easy it is to bypass the writing underneath the chart and just see the chart... like I did... and have that knee jerk (or dystonia jerk) “holy shit” reaction. (I eventually skimmed the article.)

When all is said, researched, and done, we still have to admit how much we don't know. My PD will do what it will do. I know if I exercise my body and my brain, eat right, and do my best to stay connected with my friends, family, and the community at large, I will do better than if I watch TV all day, eat junk food, and never see anyone. I also know this has less to do with PD than with LIFE in general. Duh.

Having said all this, I know I've gone through a lot of stages since my diagnosis. So many, I have come up with my own rating scale. I call it the Reinhart New Rating Scale for Parkinson's Disease. I'm sure others will find it extremely valuable and someone will insist on paying me lots of money to continue my research.

Here it is:

Stage 1: Parkinson's? Me?

This stage usually starts when you are diagnosed. It is generally accompanied by either screaming, swearing, or a blank stare.

Stage 2: No, thank you.

This isn't just denial, it's when you tell your doctor you're returning his/her diagnosis and you want your money back or possibly, “I'd like to trade it in for a bout of stomach flu and hemorrhoids.”

Stage 3: I'm going to do this right.

For some people, this means fighting it. They express this stage with: “I have PD, but PD doesn't have me.” Others (like me) decide to embrace their situation and become as positive as possible. This could be expressed as “I'm not going to fight this, I'm going to learn to live well with PD” meaning, “I'm going to learn how to slow down and eat well and exercise and keep active in the community and do everything I want to do which means I'm really in denial about having anything wrong with me in the first place.”

Stage 4: Pac-man Power Pellets

Otherwise known as Sinemet or Carbidopa-Levodopa. All of a sudden things are good. Wow. Life is almost back to normal... sort of. If I have more symptoms, the doc gives me more power pellets. Mmm, dopamine rush. It's much easier now to be positive about life, the universe, and everything.. and I don't even need marijuana.

Stage 5: Crash and Burn

Maybe a few people can be put on medication, have it work right the first time and be just fine. For the rest of us, it's like trying to get an old record player to work at the right speed with the right records. (Okay, between the Pac-man reference and vinyl records, have I dated myself?) Too much dopamine and I'm a 45 record playing on 78 speed. Too little and the speed goes down to 16 rpm or it stops altogether and the needle screeches off the record.

The crashing and burning comes from the reality of what happens at 78 speed, like obsessive compulsive stuff, and what happens at 16 speed, like severe depression.

Stage 6: How normal do I have to be?

This is the healthy fear (or terror, depending on what effects meds have on you) of changing medications, adding medications, or upping your dose.

Stage 7: Be positive? F*(^ no.

Self explanatory. For the sake of our families and friends, we always hope this stage is short.

Stage 8: Do-over.

Let's go back to stage 3, but be more realistic about it.

Stage 9: Finding Grace

What happens when you realize these stages happen. You're not going be positive all the time, you're really going to have to slow down and it's okay. Life is good. It's okay. No, my PD isn't going to be controlled all the time and I'll have to make adjustments. It's still good. Amazingly, it's much easier to be positive more of the time when you don't put pressure on yourself to be positive all the time.

This is a rating scale I can understand. It's not perfect, some of us go back and forth between stages for years. I tend to shout, “DO-OVER!” on a regular basis.

It's okay because the grace is always there waiting for us.

For to be poised against fatality, to meet adverse conditions gracefully, is more than simple endurance; it is an act of aggression, a positive triumph.
— Thomas Mann