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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: positivity

Always Darkest before the Dawn

Terri Reinhart

I got up growly today. Snarling at my husband, who dared to be still asleep in bed, blankets pulled up to his chin (God, he looked... happy... damn him), I lurched out to the kitchen and took my meds. How long will it take for them to take this time?

I'm retired. There is no earthly reason I have to be up by 6:30. It's way too early, but my legs decided to argue. If I didn't get up, they threatened to get out of bed without me. Hah. I'd like to see them try. Restless leg syndrome isn't for wimps. You have to be strong and not let your legs call the shots. Get up one day at 6:00 and the next thing you know, they'll have you getting up at 5 am and going on a 5 mile run before breakfast.

I managed to hold them off till I got sick of trying to hold them still, then I got up out of self defense. Fine. I'll get the animals fed, take the laundry off the clothesline, and make breakfast. Then, if the legs have moved enough and the meds have taken effect, maybe I can have a nap.

It's raining. Not a light quiet sprinkle, but a downpour trying to make up for the last drought.  I put on my boots, coat, and hat. I slipped and slid out to the chicken yard and barely managed to get the grain out without falling on my ass. The chickens refused to come out of their house. As I walked back, I saw a couple of squirrels happily devouring the expensive feed. I growled at them, but they continued eating. As for the soaking wet laundry, it could stay outside.

Back in the house, I started to heat water for tea and sat down at my computer to see the news of the day. I should know by now. Don't get your first peek at news for the day on the internet. The weird news floats to the top and I was greeted with:

"Nebraska Woman Sues All Homosexuals", "Obama plans to invade Texas, kidnap George W. Bush, and create a new kingdom of liberal darkness", "Anti-evolution Legislation Introduced in Alabama House", and "Chance of snow for Mother's Day"

It was enough to make me want to crawl back in bed and pull the covers over my head. My legs, however, were still restless and the feeling had drifted up to my arms and chest. I did a few stretches then got my cup of tea and tried to curl up on a soft chair.  Mmmm... the tea did wonders for me and I reminded myself it is always darkest before the dawn.  My craziest symptoms often come up just before the meds kick in and... yes... My muscles were starting to relax and I could breathe easier again.

The rest of me relaxed, too. I know our country is making progress, even though it often seems to take 2 steps back for every 3 steps forward. We're still making progress and, unfortunately, when progress becomes noticeable, it often comes with violent backlash from those who oppose it. I'm trying to stay positive, but it also takes work to continue taking those forward steps. We're doing what we can. We're getting more involved with city politics, which is where we can make a difference. In the coming weeks, we'll be helping to get signatures for a petition, going door to door handing out leaflets, and I will continue to carefully watch the actions of our local school board, which has become incredibly dysfunctional and disrespectful towards teachers and students. I'll also continue to speak out on behalf of my friends in the LGBTQ community, whose presence brings such beauty and richness to our world.

Okay, for now, it's time to take another deep breath, let my muscles finally relax, and... nap. If I'm to do all that work, I'm going to have to rest up. I curled up on the couch and was almost asleep when I heard my husband walk in the room. As I dozed off, I imagined him snarling at me. I had dared to go to sleep again, just as the day was getting started.

And I'm sure I looked happy.

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






Living Well - Exercising the Heart

Terri Reinhart

The opposite of love is not hate, it's indifference.

The opposite of art is not ugliness, it's indifference.

The opposite of faith is not heresy, it's indifference.

The opposite of life is not death, it's indifference.” 

Elie Wiesel

In other words, I'm not talking about aerobics.

Physical exercising will help keep my physical body strong, yet there may come a day when my body isn't strong anymore. Making lifelong learning a priority will help keep my mind sharp, yet there may come a day when my mind slows and I don't remember things so easily. Life doesn't come with guarantees.

Even if there aren't any guarantees, I'm still going to place my bets on living a long life and staying upright. If there's any possibility I can keep myself going longer by doing something about it, I'll do something about it, but I won't go overboard. Once in awhile I'll even have a McDonald's cheeseburger. I'll fudge a little here and there. I won't fudge when it comes to taking care of my heart – and doing whatever I can to help care for the heart in every person I come in contact with.

Six years after being diagnosed with Parkinson's, I went back to the very first article I wrote for this journal. Do I still feel the same way?

Here's part of what I wrote.

* * *

If I ever need others to take care of me, I want people around me who will allow me to live a normal life.

This means:

· Friends and family who will get me out of the house and into the world, even if I am grumpy about it.

· Friends who will pour me a glass of wine and help me drink it, even if I’m not supposed to have it.

· Friends who will tell me bullshit stories and make me laugh.

· Friends who will make me cry.

· Friends and family who won’t mind if I tell the same stories more than once.

· Gossip. If there is a juicy story, I will want to hear it.

· Adult stories. I don’t ever want to be talked to as a child. Politics, religion - don’t stick with “safe” subjects!! I want to always have an opinion. You can even swear, if you need to.

· Friends who will get mad at me from time to time. And who will take it if I get mad at them.

· Friends who will tell me if I’m out of line.

· I want my friends and family to tell me what is going on in their lives, even if it’s painful. Don’t keep things from me so I don’t worry. You are my family and my friends and I have every right to worry about you.

· Friends and family who will hold my hand or put an arm around my shoulder.

· At least one friend who is not afraid to kiss me on the lips, even if I drool.

· Someone who will sing with me, no matter how I sound.

Being normal, being a real living human being means experiencing life. And life is both beautiful and painful. Experiencing life means experiencing disappointments and triumphs, joy and intense sadness. Sometimes it means getting really pissed off, too. And it can be delightful to get really pissed off from time to time. It’s energizing and it keeps the brain working.

I don’t want to be wrapped in cotton wool. Being safe doesn’t mean padding all the corners and keeping me from falling down. Being alive means getting hurt from time to time. I don’t ever want to be too protected. I want to be able to struggle – physically and emotionally. I want to wrestle with the real questions of life and love and friendship and what does it all mean, anyway?!

I want to keep bumping into life and crashing into love. Life does make its marks on each of us, but don’t worry. The marks you see on me?

They’re just love bruises.

* * *

Do I still feel the same way? Yes, but I rarely think about it. When I do, I know that what I want more than anything is to be able to do all this for my family and friends.

Six years can make a difference.