I recently received an email from a woman who had read one of my articles on meditation.

She had written me when it first came out, and had since found our old email correspondence. She decided to get in touch with me again as she had lost the article. I was honoured that she wanted to read it again, so I sent her the link.

We had a few back and forth emails. I found out she lived in Australia, and it was all lovely and nice and then she wrote that she’d read one of my most recent posts and understood I was dealing with Parkinson’s.

So. She sent me a YouTube link that I needed to see…I clicked the link and the dude on the video said all I had to do was eat nothing but meat and butter and I too, could be cured of this silly disease.

Well, shut the front door!

I sent it straight off to the Michael J. Fox Foundation. I mean seriously, they’ve raised untold zillions of dollars for Parkinson’s research and here’s the answer!  It’s obviously quite simple. What the hell have they been doing with all that money?

I mentioned this story to a friend and she said her sister had mentioned the very same cure for me, but only if I was “open-minded” enough to try it. Well. There ya go. Apparently everybody knows what I need to do. And although a grilled steak covered in melting butter sounds appealing, I think I’ll stick to the boring old science.

There is no shortage of information to be had. And now, you, dear reader, can dazzle friends and acquaintances with some of the fun brainy facts I’ve gleaned. After all, Parkinson’s is the fastest growing neurological disease in the world, so it’s good to keep up on these things.

First, you need to know that in a healthy individual, your average brain has around 500,000 dopamine-producing neurons.  Parkinson’s is defined by the loss of this dopamine production. By the time Parkinson’s disease has progressed long enough to be diagnosed (usually ten or twenty years after this process starts) the Parkinson’s patient will likely be down to around 100,000 of these dopamine-producing cells.

First off, though that’s obviously a bad thing, it is quite a testament to the plasticity of the brain to carry on adapting to these ongoing neurological changes. That is, until the lack of dopamine really starts to make its self known by the worsening effects on motor and non-motor systems. Turns out that dopamine is a rather key ingredient in our ability to function. It helps us move, balances mood and influences our emotional health.

There is still no definitive reason as to why this occurs to some of us and not to others, though more and more of the research suggests that it is likely triggered by something toxic in our environment. 

But hey, we’re here for the fun facts!

Here’s one for you. On average, your brain is only 2% of your body weight.  Yet it consumes about 20% of your energy. Alice wasn’t kidding when she said feed your head. This is one more reason to eat as healthy and as well as possible.  The latest Parkinson’s research suggests the MIND diet is probably the most helpful in this regard. 

But this also helps to explain why I’m often so freaking tired. My 100,000 dopamine cells (which are continuing to die off as the disease progresses) are in chronic electrical overload as they try to do the work that is usually performed by 500,000.

Once a significant number of these cells have died, a person begins to show the symptoms of Parkinson’s, such as tremors, slowing and stiffening. This is what happened to me…minor tremors, ongoing painful stiffness in my joints and muscles, walking slower and slower and sometimes barely able to move at all, my left arm no longer swinging and sometimes suspended in front of me as if carrying an invisible bag of groceries, micrographia (tiny cramped and becoming illegible handwriting), random loss of voice, difficulty swallowing, unintentional weight loss, fuzzy vision, sudden cramping, stooped posture, and in retrospect, more and more apathy/depression that I never acknowledged to myself or anyone else.

All of these things were seen by me as frailties and were best not to mention. Until the diagnosis connected all the random dots, I just beat myself up for being too weak to keep up on hikes and walks.  Everyone else, I told myself, had arthritis and other age-related issues and they all managed to keep going. Why couldn’t I?

So, I would take another Tylenol. Maybe I just needed extra ibuprofen? But the harder I pushed to walk faster, the slower I got, and the more everything hurt.  It was all a little ridiculous.

As for feeling a little ‘low’, well, c’mon, that was just because I needed to buck up and work a little harder. Put some effort into things. Repeat positive thoughts. List those bloody gratitudes. You’ve got this Colleen!

Don’t you love living in this new age world of positive self-abuse?

I certainly never wanted this disease but it was a huge relief to finally name what was happening to me. Apparently, when a disease is changing your brain, it isn’t fixable by just adopting a better can-do attitude. Turns out some shit is bigger than positive affirmations.

So, three times each day, I take my two carbidopa/levodopa pills. This gives me enough dopamine to keep moving, gives me my ability to read my own writing again, helps my arm to move when walking and pretty much stops the tremors. It does not make walking easy but it’s definitely better than it was. My voice can be fine and then the next minute I transform to a husky whisper and sound like I’ve spent a wild night in the bar with too many cigarettes. My face has changed too. I look endlessly serious as the muscles in my face flatten from the missing dopamine.

 

I continue to lose weight though I’m hoping that has finally plateaued. The pain in my legs moves and morphs. It’s the worst when I try to go to sleep. Oh yes, and sleep now comes with large gaps in the middle of the night…so we are now referring to those periods as extra-long meditation sessions.

Mercifully, I have been spared by one of the more disabling aspects of this disease; constipation. Follow enough Parkinson’s Facebook pages or other sites and constipation will be the topic du jour. Turns out that good old dopamine keeps your guts moving too. Constipation is such a big deal in Parkinson’s that some have been known to say that if you’re not constipated, do you actually even have Parkinson’s?

Good ol’ poop jokes. You gotta love ’em.

Humour, my friends, is still alive in the world of PD.

In fact, some people living with Parkinson’s are so light-hearted about the topic that they refer to themselves as Parkie’s. Doesn’t that sound fun? Well, kill me now. Do NOT ever call me a Parkie. If people want to call themselves that,  it’s fine…for them. It is certainly not for me. Because you know what? This disease, is definitely not fun.

Besides, to me that means my entire self is defined by this disease. I am living with Parkinson’s. I am not only and exclusively defined by Parkinson’s and therefore I am not a Parkie.

This is the hill I will die on. It’s about as funny to me as the good ol’ 51st state joke about Canada. As in, I’d just as soon come for your throat as find that amusing.

 

Perhaps I digress.

We were talking about those pills…

The medication does not slow the progression of the disease (seriously, don’t you think a word like progression would suggest more of a positive state?). The dopamine-producing neurons continue to die. Eventually there will not be enough meds to cover for the deteriorating situation.

However, we are not there yet. No one knows why some people get worse quickly and others maintain at the same level for years. Life is a mystery. This much is sure. The research continues though a cure is so far out of reach. The only thing researchers seem to agree on is that exercise and eating well is key. But then, that’s what everybody is supposed to be doing anyway…so it doesn’t feel like much of a radical prescription.

Still, I am compliant. I walk every day, I swim, I meditate, I rest when I feel like I’m going to fall down and I take the pills, though they come with their own quirks…like the months of low-grade nausea that came after every dose. I eat my dark leafy greens, I pile on the cherries, nuts and seeds on my breakfast bowl. I guzzle water like I’m trekking in the Sahara.

Other neat tricks come and go. Is the random numbness in my toes, fingers, sometimes my arm, part of it? Who knows? Will my leg give out from under me again?  Whatever. I do know this…the symptoms change all the time. I just get used to one thing and then it disappears and is replaced by something else. Some days are definitely better than others.

But here’s the thing. Parkinson’s or not, I have a pretty cool life. I love making art. I have great artistic friends and am part of a wonderful collective that shows our art. I am part of a film society that brings wonderful independent films to Kimberley. I belong to a fabulous book club where the discussions are nourishing and smart.  And as hard as it is for me to comprehend, this summer is my 36th annual bike trip with some pretty amazing friends. I live in a cozy home surrounded by nature. I have the privilege to eat well and travel often. I have found three other women with Parkinson’s and we have made a wonderful support group. Next week, we’re putting together an event to connect more people with Parkinson’s in our community.

Also. I have the coolest husband in all the world and in case I haven’t mentioned it six hundred and seventeen times, my dog is the bestest dog in all the land.

 

Parkinson’s or not, I have a life where I’m contributing to the community, writing, making art, making new friends, cherishing old friends,  eating great food, having new experiences and, all of this, this stuff that makes up a life, is held together with so much love…all that’s truly missing is a big buttered hunk of steak.