You’ve Got Parkinson’s!

You’ve Got Parkinson’s!

So. You’ve just been told the news.

Take a breath.

And another one.

And yes. I know. I know.

You’re devastated. Your mind leaps ahead. The future looks shit. You feel so alone. So marooned.

(In fact, you’re not alone. Each day in Canada, approximately 30 people will be newly diagnosed with Parkinson’s).

This, I know, is not a comfort when you’re staring into an abyss.

But maybe, more than that, you’re confused. All the brochures on PD (yes, you’re now in the club and have permission to wield the acronym with aplomb), are illustrations of hunched over cane-wielding old white dudes.

But what’s that got to do with you?

You’re female, fit & feisty…why on earth are you being given a brochure and a diagnosis with a picture that depicts, what we can only hope is an illustration embodying the demise of our current white patriarchal gong show…

You know what I’m talking about, right? The capitalistic shitshow that is mostly run by inept corrupt dudes in ill-fitting suits.

I’m looking at you Donald. Yes, you, the Rapist in Chief, the guy with the melting orange face and the diaper pants. The guy that is the embodiment of all that is systemically evil and wrong in the world.

Perhaps I have veered off track? Oops.

Let’s try this again.

So yes, where were we?

You’ve received the diagnosis, and now, you’re reading about all the symptoms and starting to connect the dots. You cast your mind back and realize it’s been years. Years of random things that had gone wrong, that only now have combined into a big enough mess to make you demand answers.

Remember the remarkable magic lemon juice you used as invisible ink when you were a kid? I loved making up treasure maps with it. The thrill of watching the connecting dots line up to point to the treasure, all because the candle revealed the no-longer invisible ink of the lemon juice.

Your diagnosis is the flame’s light that has just rendered all those dots, that you thought were isolated incidents, into a pattern called Parkinson’s Disease.

To be fair, this metaphor kind of sucks, because there really is no treasure involved.

Sorry.

Still…

All those moments, those symptoms, those complaints have come together to reveal themselves into a compilation called Parkinson’s:

The persistent Achilles flare up, the frozen shoulder, the screaming and acting out of dreams, the fuzzy vision, the neck pain, the clunky hip, the uneven wear on your shoes, from, what turns out to be a bit of a dragging of that one foot, the arm that doesn’t swing in tandem with the other while walking, the inability to smell the burning onions, the random and increasing trembling of your hand and sometimes your face, or that weird internal buzzing that feels like an electrical short-circuiting of all your organs, the tightening, and almost painful cursive that has become illegible, the awkwardness of holding utensils, the weird way you fumble with buttons, the way it’s harder and harder to turn over in bed, the restless legs that absolutely must keep moving, why it takes so long to tie your shoes, to get dressed, to do up a zipper, the needle-like piercing hot pains that pierce your knees, the hoarse voice that sounds like you spent the night in the bar with two packs of cigarettes, the way your left foot feels slightly possessed at it turns turns inward, that moment you catch your reflection and see a face that looks angry and flattened, that other time you catch your full body mirrored back to you and you see that you’re hunched over, head craning ahead, neck rounded, the way you cannot think yourself into moving faster, the way your legs feel like they’re bags of wet cement, making it harder and harder to slog forward, the incredible rigidity and stiffness in every muscle that no amount of stretching will release, the way it feels insurmountable to walk across the parking lot, how you can’t summon enough energy to reach your car…so many dots revealed, so many dots suddenly connected.

So many fucking dots.

The patterns are suddenly so obvious with the illumination of diagnosis.

But now what? You can cry for awhile. There is lots to cry about. You can be angry too. That’s okay.

Get to Work.

But then, it’s time to pull up your big girl panties and get to work. There are things to know. In fact, there are three things you can do besides take the levodopa/carbidopa that you are sure to be prescribed:

1. Exercise.

2. Exercise.

3. Exercise.

That’s it. Keep moving. This sounds doable, until of course, the bone-crushing fatigue sets in, or the fun non-motor symptoms of apathy, depression or anxiety grab hold and freeze you in their thrall.

Still, that ol’ adage of move it or lose it? That was definitely said with PD in mind. This is not a particularly easy feat. You often will most assuredly NOT want to move. Move anyway.

If motivation is a problem, and that’s almost guaranteed (see apathy and depression as mentioned above), then sign up for classes where you can rely on peer support to keep you going. Strength training, balance exercises, dance, cycling, walking, whatever you can do and do consistently, is what you need to do.

There is a fear, and it is legitimate, that the longer you take the pills the more likely the side effects of dyskinesia (those jerky uncontrollable movements) will show up. But here’s the stupid Catch-22. If you don’t take the pills, you can barely move, if you can’t move, you can’t exercise and exercise is the only thing that actually might help.

Basically, the best advice I’ve found is this: You have today. You have no clue about tomorrow. Today you want to be able to exercise so today you take your pills. There is no point in worrying about tomorrow. Tomorrow may not come.

Take the pills. Walk out the door. Keep moving. You’re welcome.

This is coupled with the conflicting and oh-so-confusing advice of, “Remember to rest!”

Right then.

No one said this would be easy.

There are some other things you can do.

Your diet is important. The MIND diet seems to be the most recommended plan. It’s basically the Mediterranean diet with an extra emphasis on dark green leafy veggies and the odd glass of red wine.

Hydrate. Drink more water than you ever thought necessary.

It is the depletion of dopamine that slowed your legs, made your fingers fumble and slowed your thinking. Your autonomic system is no longer running the basics in the background…stuff like your heart rate, blood pressure, sleep, bladder, temperature…and of course, the biggest complaint in this category, the sluggish bowels.

So. Drink the water. Load up on the fibre. It’s not just that constipation feels nasty, it also affects your absorption of the meds. You don’t want to be messing with that. The other thing that can interfere with absorption is protein. Timing of your medication with your meals is important. Try not to eat anything, most especially protein, one hour before or after you take your pills.

However, one of the frequent side effects of the pills is nausea. And guess what? For me, a piece of toast can go along way in holding some of that at bay…whaddya gonna do? I’ll tell you what I do…I eat.

Meditation. Positive mindset. Gratitude. Looking for the bright spots. These sound like Pollyanna answers to a very serious condition, but the science is solid. It all helps. Focus on the good stuff. Listen to your self-talk. Do you have a running negative narrative or are you encouraging yourself the way you’d try to uplift a friend that’s struggling?

Be your own best friend.

This next bit is the BIG one. Ask to have your B6 levels checked. Parkinson’s Disease can deplete these necessary vitamins.

Oh, and the gold standard pills of levodopa/carbidopa that you are now taking…guess what? To review…those pills that have enabled you to move, which helps you to be able to exercise, which is the ONLY thing they think can possibly slow the advance of this disease…these same miracle-working pills also have a tendency to deplete B6 levels. (Why on why, does there always have to be an unintended consequence?).

In fact, in March of this year, the American FDA now requires a warning on these meds, that they may cause B6 deficiencies leading to numbness and burning toes and/or fingers, neuropathy, depression, further walking problems, seizures and death.

So there’s that.

Strangely, your doctor/neurologist may not mention this. But now you know.

Which brings me to my most important piece of advice; advocate for yourself.

Ask questions.

Ask more questions.

Ask for the blood tests.

Bring in the latest article you’ve found, ask if it applies to you.

Make another appointment.

I’m not going to pretend this is an easy thing to do. I’m uncomfortable with taking up space/time in our overworked healthcare system. But then, I go back to my previous advice of treating myself like my best friend.

I have no problem advocating for someone I love and care about.

So I ask myself, what if that someone was me?

Please ask yourself the same question and make sure that someone is you.

Thanks for coming to my TED talk.