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Read the first It’s a Parkinson’s thing post for whys and what fors.

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The Force wasn’t with me Christmas Day

 
We often celebrate a Jewish Christmas in our family…on Christmas Day we (me, my husband, and our grown son and daughter) go to a movie and have Chinese takeout for dinner. When we first started doing this we had movie theaters and Chinese restaurants mostly to ourselves, but nowadays the few places open are more and more crowded.

I’d like to blame the crowds for what happened to me on Christmas. But the truth is that my Parkinson’s was simply stronger than the Force that day.

It felt like the Force was with us when we arrived at the theater. An open disabled parking spot about 20 feet from the doors seemed to be waiting there just for us. Sitting in one place for a couple of hours kicks off a severe round of rigidity for me and the walk back to the car usually feels 3 times as hard and twice as long as the trip into the movie.

As a bonus, I was limping from tendinitis in my left knee, so we wouldn’t risk any dirty looks from strangers for taking a disabled spot when I look just fine to them.

Everything was falling into place…as it does when you have the Force at your side. I thought maybe the movie trip would go easier than I anticipated.

Alas, no.

While I watched the Force awaken on the big screen, all sense of cooperation and dependability in my injured knee drifted off to sleep. And when I stood up after the movie, I discovered that my former left knee had stiffened board straight and refused to participate in my walking plans…like a pirate peg leg but less reliable.

With the help of my husband and well-placed railings I hobbled out of the auditorium, assuring us that I could make it to the car. And I might have, if it weren’t for the perfect storm of my rebelling knee, a sloping floor from the theater to the lobby, and a speeding ewok-sized fan careening into me on his way to the next showing.

That’s when my knee quit for the day. No amount of Force, reason, or pleading convinced my knee to bear any weight. My husband and son became crutches and basically carried me to the car. There was no avoiding stares from strangers, but at least they weren’t judgey this time.

The entire scene must have been hilarious to watch. My husband is 6ft tall, my son is more like 5’8, and I’m not quite 5’2″. There was no graceful exit to be had by this wobbling, hopping, constantly rearranging mass of arms, legs, and vocal instructions we became. My daughter was leading the parade…clearing space and opening doors as we made our way to the parking lot. Soon I was back home on the couch with ice on my leg and Chinese take out on the table.

I didn’t notice anyone laughing as we left the theater, but I hope some did. I’ve been laughing about it ever since. Life is too ridiculous not to laugh about. Besides, these kinds of things happen to me. To all of us. Sometimes the Force is with you. Sometimes it’s not.

Sometimes you make a spectacle of yourself in public.
 
But it’s all good. Life is better when it’s funny and weird, with or without the Force.

Parkinson’s is a pain in my neck

I remember having horrific stiff necks as a teen, waking up unable to turn my head in one direction or the other, and sometimes neither. They typically hung around for several days, with searing pain from skull to shoulder, and from spine to jaw. During my high school and early college days, those bothered me more than any of the various childhood bone breaks, sprains, and bumps to the head.
I tried changing my sleeping position and pillow thickness. I tried heat and cold. I tried aspirin and acetaminophen, brandy, whiskey, rum, and assorted combinations of those. Nothing I did or didn’t do affected how often I got that pain in the neck or how long it stayed. I learned to just endure it and ignore it as much as possible, reminding myself that even though it felt like it would last forever, it would fade away in a day or two.

I stopped getting stiff necks in my early twenties and for a couple of decades I didn’t experience more than one or two. I didn’t think about them at all until a few years ago, when–after years of illness, a variety of symptoms, consultations with several doctors and specialists, and many tests including a head and neck MRI–a neurologist told me that she believed I had Parkinson’s.

“I’ve had this persistent pain in my neck,” I told her with what I believed was a non sequitur. “Was there anything on the MRI to explain it?”

There wasn’t.

“That’s probably the Parkinson’s,” she said. In addition to the main symptoms necessary for clinical diagnosis, Parkinson’s comes with a long list of additional symptoms that can manifest when that region of the brain is dopamine deprived. No two people get exactly the same Parkinson’s symptom cocktail. Mine contains neck pain and stiffness.

Unlike those teenage stiff necks, this one never goes away, although my Parkinson’s medication does decrease the intensity. On good days it fades to a pinch of stiff to the left at full dosage. On bad days there is no left turn–only straight and slight right. Most of the time it’s an ever present ache, strongest in the morning and then receding and advancing predictably like the tides, as my medication kicks in, peaks, tapers off, and kicks in again. It’s often a better notice than my phone alarms that pill time had arrived.

Most days, the lack of a pain free complete look left is among the least of my concerns. But it’s also a nagging reminder that living with Parkinson’s is a pain in my neck.

Three years and still learning

Today is the 3 year anniversary of my diagnosis with Parkinson’s Disease. It’s also the final day of Parkinson’s Awareness Month. In honor of both, I’m going to share the first three sources I went to for information.

1. The Mayo Clinic

2. The Michael J Fox Foundation

3. The National Parkinson’s Foundation

I knew nothing about Parkinson’s before my diagnosis. No one in my family or in my life had ever dealt with it before. Thanks to the Mayo Clinic in Jacksonville, The Michael J Fox Foundation, and the National Parkinson’s Foundation, I have access to a wealth of information and am kept informed of the latest developments in the relentless search for better treatment options and ultimately a cure.

There are additional credible and helpful websites and organizations, but these are my favorites, and a great place to start learning more about living with Parkinson’s.

 

 

It’s a Parkinson’s thing

My instinct is to provide some sort of introduction. Set the scene. Bring you up to date. Ease you into the truth about living with Early Onset Parkinson’s Disease.

But easing you into the truth isn’t a Parkinson’s thing.

Parkinson’s is more ninja. By the time a neurologist leaned toward me and said “I’m afraid you have Parkinson’s,” the damage was already done. It didn’t wait for me to understand the diagnosis, educate myself, or decide how to manage it. Parkinson’s continues to plow through my life according to its plan and on its timetable. Neither of these are shared with or controlled by me. All I get to control is how I deal with it.

More than 2 1/2 years after my diagnosis, and 5 1/2 years after I got sick enough that symptoms began interfering with daily life, I’m just starting to figure a few things out. If you’re looking for answers, this is not the blog for you.

This is a place for me to talk about Parkinson’s so that I don’t have to talk as much about Parkinson’s everywhere else in my life. I don’t know yet what that will look like, or how often I will post. But this blog will be a home for my thoughts, observations, annoyances, philosophies and strategies for living with Parkinson’s.

You are welcome to follow along.

Obligatory I’m not a doctor so don’t sue me disclaimer: I have Parkinson’s. I do not have a medical degree. Nothing I write, post, or link to should be mistaken for medical advice.