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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.

Filtering by Tag: Coping

Wisdom and Strength and Love Shall Grow

Terri Reinhart

Having a sympathetic young police officer NOT give me a speeding ticket is one of the perks of being an elder, but being an elder also means learning how to let go. We have to let go of bits of ourselves, what we used to do, who we used to be. With any progressive neurological disorder, letting go starts a lot sooner.  What happens when we get to the point where there are things we can't do anymore? 

Okay. Stop right here. I know what you're thinking. I've heard it before, many times. Please don't send me the quotes and memes saying, "Stay positive! Don't ever say you can't do something!"  I don't want to see the videos of 99-year-olds riding skateboards, climbing mountains, or running marathons or the videos of 99-year-olds with Parkinson's riding skateboards, climbing mountains, and running marathons. I get the point. If they can do it, so can I.


The message in these memes and videos? Running marathons = awesome, walking with a walker = not cool.   Climbing mountains = awesome, needing help to climb stairs = not cool. Riding on a skateboard = awesome, riding a mobility scooter* = not cool. If we must have Parkinson's or if we must get old, be like the awesome ones. I know it's all meant to be inspiring, but too often it's discouraging. Nope. I obviously can't be awesome because, try as I might, I'm not going to climb mountains or run marathons or ride skateboards.

Stop again. Breathe out. All those memes and videos? Hit the delete button.

Now, a reality check. Giving up the awesomeness of climbing mountains, running marathons and skateboarding isn't difficult for me. I don't do those anyway and, if I'm truly honest, I don't want to. It's when I have to give up things I love to do, that's my true test.  

Because of fatigue issues, I've had to give up a few things - working full time or  even part time, volunteering regularly, doing more than one major activity per day and not more than three per week. I've been very lucky. What I've had to give up, I've been able to replace with other activities like naps...and, well, other things... like naps.. and... Okay, instead of felting intricate pictures and figures, I'm knitting little animals for my grandchildren.  I can join my husband on his daily walks if I adapt and use my cool scooter*. I can, occasionally, be in a clinical study and once in awhile, I even get paid for it.

We all respond differently when we are faced with chronic health challenges and the challenge of growing older. Some will choose to not go gentle into that good night, but will, as Dylan Thomas' poem advises, rage, rage against the dying of the light. Some will pretend their challenges don't exist and try to pass as a younger person in perfect health. Some will be convinced their challenges will go away if they are just positive enough. Some will climb mountains and ride skateboards till the day they die. 

I don't want to spend the rest of my life raging or feeling guilty because I'm not climbing mountains.

My mentor is Dr. Paul Zeiger, engineer, scientist, university professor, yoga teacher, poet, and PWP (person with Parkinson's). He says we are given many opportunities to reconfigure our lives according to the resources we have available to us. He knows. He and his wife, Carolyn, have had to do this time after time. Paul says that growing old is the most difficult work a person will ever do. For some of us, a marathon is also known as getting through each day.

There is a verse which is said by the first and second graders at the Waldorf school at the end of each day. It allows the children to put their academic work aside, let it rest.

All my doing now has ended.
What I have learned shall rest.
When I have done my very best,
wisdom and strength and love shall grow
and I will bless all those I know.

We tend to identify ourselves by what we do and when we lose the ability to do something, it can be like losing a part of ourselves. We have to reconfigure ourselves and find out what this new.... or older body can still do. If we get stuck trying to hold on to who we were once upon a time, we're not leaving room to discover who we are now. The time for doing some things may have ended, but we can let them rest and trust in what we have learned from our doing.

We have to grieve and maybe even rage a little. But what if we take Paul's advice? What if we could let go of those lost parts of ourselves and let them  go gentle into the good night? If Paul and Carolyn's lives are an example, we know if we can let go and let those things rest, our lives are not empty, but will include wisdom, strength, love, and the capacity to bless those around us.

Skateboarding is optional.



*My mobility scooter IS cool. Some 12 year old boys told me so. It is a TravelScoot, the best little scooter ever. Thank you, Roger, again and again, for blessing me with this gift and the bigger gift of a connection with our family in Luxembourg.




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