Flip flop and fly.

When I was a kid growing up on Cherry Street in Mission City, BC, the joke in my family was how much I twirled around in my sleep. Each morning, the blankets on my bed would be twisted and flipped and often I’d find myself with my head near the foot of the bed and one leg dangling off the side.

In short, I moved around a little.

Flash forward a lifetime later and throw in Parkinson’s.

Turning over in bed is not without a lot of strategy. Prior to diagnosis and the addition of all the meds, it was almost impossible. Now, it’s mostly achievable but not without serious consideration. I have no idea what muscles are involved, but clearly, the message from the brain to the appropriate muscle has worn thin, a frazzled connection that delivers an ever weakening and skinny signal.

But move I must, because staying in one place too long causes the neck to seize or the legs to begin their own special painful reminder that being stuck in one place is not good.

Sometimes, if I fling my one leg over the side of the bed, I can use that to leverage the move. Other times, I have to sit up and scooch my way into the turn, the trick always is to somehow get the pillow bunched up in just the right way to hold my neck in the perfect position. Otherwise. Well, it’s not good.

And then, for whatever bizarre reason, lately some other signal gets jammed and my brain gets stuck on an old Sunday School song.

God Sees the Little Sparrow Fall. Seriously?

Let me back up a little…back in my childhood, at the aforementioned house on Cherry Street, robins regularly bashed their beaks sideways into our spectacularly clean living room window.

They would lie, stunned and gasping for breath beneath the picture window.  Sometimes they would die under different windows, but most often, it was that large expanse of living room glass that tricked them into thinking they could fly right through the house. They were oblivious to the invisible barrier that determined their distance. 

I would run outside and stare at the flopped over neck, the open and closing beak, the few downy feathers stuck to the window, and those beady darting eyes. I would wait, and then, once the bird’s chest quit fluttering, I would carry the still-warm and surprisingly solid weight of their small bodies to the back of the garden. After digging into the dark dirt, I’d find Holly, Carol and Bridgot so I could conduct another funeral. 

I think now that my earliest questions probably started with those dead robins and the lyrics of that tried-and-true Sunday School classic.

My questions were, of course, never spoken aloud. Not since I’d made Mrs. Rempel cry and run out of the Sunday School class, when I kept asking about where the extra people came from for Cain and Abel to marry? It was obvious there was a big hole in that origin story. After that I knew to keep my thoughts in my head. I already knew how close I was to eternal damnation and Hellfire. But every time we sang this hymn, more questions spun around in my head:

God sees the little sparrow fall, it meets His tender view, If God so loved the little birds, I know He loves me too. He loves me too! He loves me too! I know He loves me too! If God so loves the little birds, I know He loves me too. 

Given the ongoing dead robin situation, it seemed to me that birds could smash themselves to death on a regular basis and God’s tender view didn’t change a damned thing. That was love? Tenderly watching someone die? How on earth did that possibly prove He loved me too? It seemed like very flawed logic. 

Also, given how many church funerals we attended, if God was looking upon His creations with His tender view, He was basically quite ineffectual. No matter how many beseeching prayers were implored from the pulpit, the sick person being prayed for would inevitably die. Then the message would change to how it was part of a much bigger plan and that we had no way of knowing of God’s intention for any of us.

Or the other crowd pleaser was the ridiculous (and mercifully not too common) observation that God had picked another flower for His garden. I always wondered why they kept praying and begging God for a healing miracle if it was all fated anyway? And what kind of a monstrous God picks people off like they’re some kind of flower for His centerpiece bouquet on His big Heavenly table? 

Also, this God, who was all about looking at us with his kindly tender view, was more often described with tales of smiting. He was really big on smiting His people.  I thought smite sounded as spectacularly horrible as it was. I always envisioned a gigantic white God-hand doing an open-palmed smack-down on anyone He wanted to hurt. 

For that matter, from what I could see with my father, who was God’s representative on earth (and always with my mother’s admonition to Wait Until Your Father Gets Home), and from what was preached to us from the pulpit, God seemed to be more of an angry-smiting God than a tender-viewing kind of guy.

Considering the big ace up His sleeve was eternal damnation and the tortuous flames of Hell, the idea of a tender-loving God was lost in the message of His righteous anger and all the retribution. In all the stories, He regularly doled out deadly abuse to the unsuspecting and the unrepentant. 

And when I first heard the story of Job…I couldn’t believe God would play games with a man’s life like that. It was nothing more than a Vegas bet with Satan, who had way too much fun torturing Job.  This was the same God, who, except for one arkful of randoms, drowned everything on the planet. 

If you compared this Big Guy’s behaviour with a regular parent? You’d have that guy jailed for abuse. Yes you would.  It seemed to me that God did not make man in His image. Nope, man made God in his own image, just bigger and badder and meaner. 

Let’s face it. This is a God, who, no matter how much they talked about as loving, could, and oh yes, He would, just like that, smite you into the ground. As easily as snapping a robin’s neck against living room glass. 

But that was then and this is now…

I no longer twirl and spin in my bed.

I no longer believe in stories that should never have been sold as literal truths. In fact, those old stories hold so much more power as metaphors and instructive origin myths.

I no longer believe, or more correctly, am terrified by, the angry God of my childhood. That too has been replaced with a spirituality that sees god in all living things, including me. It’s a pantheistic view that the divine or consciousness or love, call it what you will, imbues all reality.

But birds still crash against windows.

And fundamentalists of all stripes continue to wage ‘holy’ wars, sure of their God’s particular might and convinced that the ‘other’ is the evil that needs to be eradicated.

And truly?

All I really want to do is to be able to turn over in bed.

The post God Sees the Little Sparrow Fall first appeared on Colleen Friesen.

We’d just come back from a wintry morning walk. Baxter flopped on his chair, paws tucked neatly under his chin. We pulled off snow pants and jackets. Our cheeks were red.

I sat down for a minute, trying to figure out why a fog patch had appeared in the centre of my vision.

Strange. I took off my glasses. There was no foggy spot to be found, and, even with them off, the fog remained.  In fact, there was a big greyed-out hole in my field of vision though I could sort of see around the perimeter. I asked Kevin if he could see anything in my left eye. Nope. I held my hand over my right eye. It was there. Held my hand over my left eye. The right eye’s vision was fine.

Maybe a minute or two passed and then the grey sank to cover the bottom half of my sight. And then it morphed into something resembling a film negative, except it was still grey but with beautiful magenta marks and highlights. Finally, the fog sank toward the corner of my eye and, just like that, it was all over. Maybe the whole thing lasted five minutes.

There was no big drama. No startling revelations. It was just some rather strange moments.

And given that Parkinson’s is really all about a random version of whack-a-mole symptoms, I chalked it up to one more stupid moment of dopamine loss.

I’ve had visual disturbances before.  I’ve had plenty of aura migraines in my life, but they are always beautiful geometric shimmers full of colour and blinding dazzle. They usually last exactly 45 minutes.  I’d had four of them in the last two weeks and found they had been shorter than usual. Best of all, unlike my earlier aura migraines, these ones lately were not accompanied by a headache.

This, though, was definitely different. The auras are always in both eyes. This fog was only in the one eye.

But hey, it was gone. I was fine. And on I went with my day.

However. I’d been cautioned by my doctor not to throw every medical moment onto the Parkinson’s bus, so the next morning hearing her cautionary advice in my head, I did my due diligence and checked online…just in case it wasn’t a Parkinson’s symptom.

Lo and behold, after writing out my description of my experience, the first site said, SEEK IMMEDIATE MEDICAL ATTENTION.

Apparently I had just accurately described a TIA (Transient Ischemic Attack).   TIAs are often also called mini-strokes, the first warning of a possible full-blown stroke to come.

Digging further, I found a new Parkinson’s fun fact (I’m so happy to be a lifelong learner, just didn’t know it was all going to be medical shit). Studies consistently show that people with Parkinson’s disease have an increased chance, nearly four times the general population, of having a stroke. While we’re on the topic of random associations…did you know that people with Parkinson’s are more likely to get melanoma?

But surely I digress…

Anyway, I’ll now give you the Readers Digest condensed version of the next events; right after my internet revelation, I got in to see the doctor on call (my doctor wasn’t available until the end of the month), she took down the information and referred me to the TIA clinic, they interviewed me over the phone, then I met them in person and finally met with the internist. In less than a week from when it happened, I was swallowing blood thinners and popping a daily 81 mg aspirin.

The internist told me my cholesterol would be considered within the acceptable range for a ‘normal’ person, but since Parkinson’s increases my heart issue possibilities  (yippee, see above) and because I’ve had, what the internist now believes were probably three TIAs,  it looks like I will also be prescribed statins to lower my cholesterol as far as possible so blood flow is optimized through all those pesky veins and arteries.

The probable previous TIAs were from last year. One happened when my right leg completely gave out, and though I didn’t fall, I think it was only because Kevin saw what was happening and held me up. But it too was over fairly quickly.  The other time was when my right arm did something similar, going completely numb and limp, my pencil falling from my hand as my hand flopped open and useless. It too was over within a few minutes.

So consider this my public service announcement. If you suddenly lose vision in only one eye, if your leg or arm (on only one side) suddenly gives out on you…get thee to Emergency. There are other possible symptoms but these are the ones that have happened to me.

I titled this a Selfish Public Service Announcement, so here’s the selfish part. In spite of the medicines, the odds are not in my favour. I could graduate from these TIA warning shots to having an actual stroke.

So here’s my big ask…I am hoping you will take the time to learn the FAST rule, so that if the big one comes at me while in your company, I want you to know what to do. Time is of the essence. The key is to get treatment fast to reduce the damage.

I told you this was all in my own self-interest!

But seriously, I am also very much hoping that you can learn from my experience.  Learn to recognize and be alert for the signs that tell you when you need to get to the hospital. Do not second guess yourself. It’s better for it to be a false alarm than for it to be ignored.

I’d love to wrap this up with some clever quote, but alas, all I know so far is this; in spite of all our medical efforts and the healthiest of habits, not one of us gets out of here alive.

So, look around you. Pay attention. Appreciate your life. Practise gratitude.

Protect your health and most of all…be kind.

The post A Selfish Public Service Announcement first appeared on Colleen Friesen.

Be a Warrior! 

Fight! Fight! Fight!

Why is it that everything to do with disease…whether it’s cancer or Parkinson’s or dementia…is always framed in terms of war?

“She’s fighting a hard battle with cancer.” 

“He lost his fight. In the end, cancer won.”

“He has a real warrior attitude, determined to battle his Parkinson’s disease.”

Given this language, does this mean that you ‘failed’ if you ultimately succumb to your disease? Did she ‘give up and give in’ to her cancer? Didn’t she fight hard enough?

So now, not only is the poor woman dead, she actually bloody well failed at fighting hard enough. Now she gets to wear the stigma of failure as well.  Isn’t that special?

War, by definition, is a bloody game with winners and losers. But when you look at the fallout of any war, it seems to me, that everybody loses.

In the case of fighting my disease, please tell me how I can possibly win? And what exactly would winning look like?

Would it mean I’d eradicated a disease that currently has no cure?  Well, no. That’s certainly not how it works. That’s not possible.

Bring on the drones! We must soldier on! 

So would a win be that I staved it off for awhile by eating all the healthy food I can and exercising regularly? And couldn’t I do that in a self-caring way, instead of doing it armed with angry words that act like swords and guns?

I understand the intention. We’re all supposed to dig deep and fight against whatever our condition/disease is by doing all the right things while paired with a soldier’s intensity and passion to destroy.

Destroy! Battle! Fight! Kill! 

But doesn’t it all just sound so damned angry? And aren’t we already sick of hearing about things like trump’s newly-named Department of War? In a world filled with so many bloody war-zones, does my body have to be a battleground as well?

When did we decide that everything had to be described in such ugly war-mongering terms? And does this language further legitimize the glorification of war and violence? And ultimately, wouldn’t I just be fighting myself? That seems rather self-defeating.

So here’s my declaration: I do not give permission for my body to be a war zone.

So what is the alternative?

A Gentler Path

How about healing words?

The healing arts are gentle and nurturing but, perhaps like pacifists protesting a war, they are seen as simply weak? But for me, healing, insofar as I’m able to take it within the context of this disease, is simply an attitude of nurturing.

I see healing as being supportive and compassionate to myself. To support the best in my body so that I can deal as best as I can the indignities of Parkinson’s disease. It does not mean I will become healed from the disease, but rather it is a caring for myself, a response that is, by its very nature, the exact opposite of war.

If you’re picturing me looking like a tie-dyed hippie right now…please rest assured my anger, like my grief about this condition, is often close to the surface…though it has been said that I have an affinity for well-worn jeans and maybe a little too much silver jewellery.

Still.

I am simply choosing to cloak my journey in the language of pacifism, love, hope and kindness, for myself and for others. The headlines can continue screaming their language of war. People can still choose to battle their conditions if that’s what works for them.

But for me, I am choosing the language of kindness.

Maybe that works for you too. I hope so.

Peace be with you.

“All shall be well, and all manner of thing shall be well.” ~ Julian of Norwich

The post Wars & Bloody Battles first appeared on Colleen Friesen.

I have always thought of myself as a fairly empathetic person.

Knowing that empathy could be learned, and that empathy is also more common in readers, as books offer us a chance to view the world through someone else’s eyes, it seemed I was on top of it.

As a girl who grew up with a mother who often repeated the idea of ‘walking a mile in someone else’s shoes’ combined with the fact that I spent a lot of my childhood under the quilt with a flashlight and the latest Trixie Belden, and, as I still read a large amount of fiction albeit without the flashlight, I was pretty confident I had the empathy thing pretty much dialled in.

However.

Let me back this truck up.

In the last couple of weeks, my ‘off periods’ between pill doses was getting longer. This meant that in the hour or two prior to my next dose, I would find myself feeling more jittery, increasingly anxious and my usual feeling of being vaguely unwell would amplify into feeling pretty darned shitty.

Luckily my appointment with my neurologist was scheduled for this past Friday, exactly at the time when I was truly ‘off’. I was shaking, walking stiff and close to tears when I explained to him, that this is NOT who I am.  I confessed too, that I’d been reluctant to tell him about these periods, because I was pretty sure he would recommend increasing my dosage.

He looked slightly bemused at my confession. And, as I suspected, he advised me to increase my meds from my current dosage of two pills three times a day (six pills total) to two pills four times a day (eight pills total).

I was very reluctant to implement this plan. In my mind, it meant owning the fact that more of my dopamine-producing neurons had died and that this was the beginning of the slide to more and more pills. I knew this was mostly inevitable but I was not willing to admit I was already at this point.

The real fear, of course, was that the more pills I take and the longer I take them, the more likely it is that I will end up with dyskinesia.

I suggested an alternative. What if I switched to 1 1/2 pills four times a day? It would still cap me at my current dose of six pills but there’d be less time between doses so perhaps that could minimize the off periods?

“You can certainly try that,” he said, “But remember, if it’s not working, please move up to the eight pills/day.”

I saw him Friday morning and by Friday afternoon I was snapping pills in half like a pro. This was bound to work, right??

Turns out the reason he had that dubious look, was that I, once again, was delusional.

Still, I persevered, but it was definitely getting harder to function. By Monday, when I dropped off our car to have the summer tires switched to the winter ones, I had slowed to a bit of a crawl. It was becoming increasingly painful to stand, never mind walk. Still, the car was going to take 90 minutes and it’s not far from the tire shop to the mall…I would simply do a few errands and come back.  But as I shuffled toward the highway crosswalk, I wondered if I would have enough time to even make it.

I focused on moving as well as I could as I watched the crosswalk seconds tick down. Made it!  Now I had to navigate the mall’s parking lot which suddenly looked ridiculously huge. I thought of all our amazing walking trips, like the one in Wales, clocking over 25 kms/day up hills and through the tail end of a hurricane.

And now here I was. This. This was now my life.

I made it into the mall and immediately sat down on the bench in the entrance: the very same bench where you often see old people.

Yes. THAT bench.

And it was here where I began thinking about empathy or maybe it’s not even so much empathy I’m talking about but more of a humbling realization of why people might be moving slowly.

From my bench I watched a woman struggle past me with her cane. A little later an old man, hunched over his walker, pushed and skidded his way along the tiles. It occurred to me, that they weren’t just slow and doddering. Maybe, like me, they were slow because they were in pain.  Why had that so rarely occurred to me?

I sat with the burning muscle in my left leg, tried to ignore that my knees felt like broken glass, and that my ankles…well I swear an X-ray would have shown that they must have recently been broken.

I took a deep breath, a very humbling breath.

It seemed all I could manage was to get from one bench to the next and the biggest factor was the pain.

And this is the lesson that most of you probably already know but I feel compelled to share just in case you don’t…that is, my mother knew what she was talking about when she suggested walking in someone else’s shoes.

Sometimes we (in this case, I), really need to feel what it might be like to be that old person who is taking too long to make the right change or seems to be taking forever to move ahead in the line.  It isn’t always just a matter of slowness, they might be going slow because every movement hurts.

I am now dutifully taking eight pills a day. The 56 pills that make up a week is an impressive pile. I have mixed emotions with every pill I ingest. First off, I’m grateful to live in Canada and have access to medicines and health care that can help me but I also can’t seem to shake the scary thought of how, with every pill, I’m increasing  my chances of dyskinesia.

One Week

You would think that having this same infernal back-and-forth conversation with myself (four times every day!) would mean I could eventually resolve the issue and quit thinking about it.  You would think that. And yet…well, clearly you have never been stuck in my looping brain.

Still, my failed experiment with the lower dose served a bigger purpose. First off, it has profoundly deepened my empathy for others who are struggling. This disease continues to humble me and blow out all my assumptions about who I am and how I move through the world.

It seems I’ve always needed to be hit over the head to really understand something. I’m not saying I ‘needed’ this disease to learn a lesson because, seriously, that is such a punitive and bullshit view of the world. Instead, it’s like a new friend with PD recently said to me, “We may as well do something positive with this shitty disease.”

And that is what I’m trying to do with this post and that’s what I’ve done with my new PD friends. We’ve started a Parkinson’s group and are building community through support.

Parkinson’s Support Group

The takeaway for me, is this: faced with a crappy situation, what’s the best thing you can do with it?

Do I get this right every day?

Seriously?! Have you met me?

Still. Am I continuing to try? Most definitely.

Here’s the thing…I was a fool as a teenager and rarely thought of consequences until I’d literally put my head through a windshield or two. I’m offering you the chance to go to school on me.

So, next time you feel yourself wanting to tap your foot in irritation at the ridiculously slow person ahead of you…I hope you remember my story.

Take a long and deep breath, gather up all your most empathetic responses, and remember one of my mom’s other favourite sayings, “There, but for the grace of God, go I.”

Now more than ever, our world needs empathy and kindness. Let it start with us.

The post One Step At A Time first appeared on Colleen Friesen.

Increase Your Vocabulary!

Impress Your Friends!

Photo Credit: Bruce Searle

Wasn’t Word Power one of the sections in Reader’s Digest?

You’d think I’d remember something like this because, growing up, the bathroom was piled with copies of the Reader’s Digest. Most of the pages were slightly warped and wrinkled from the steamy setting but each copy was well-read…especially the joke sections.

Dad loved a good Reader’s Digest joke.

But lately, I’ve been thinking about that Word Power section. It has been one year since my Parkinson’s diagnosis and since that time, I have learned more new words than I ever wanted to know.

So here’s your chance to wow your friends with random words associated with Parkinson’s Disease.

Adhesive Capsulitis: also known as frozen shoulder, is a condition characterized by pain and stiffness in the shoulder joint, limiting range of motion. It can be an early symptom of Parkinson’s disease (PD) or occur due to other factors associated with PD progression, such as rigidity and decreased movement. 

Anhedonia: anhedonia is the lack of interest, enjoyment or pleasure from life’s experiences. You may not want to spend time with others or do activities that previously made you happy often caused by lack of dopamine. 

Bradykinesia: meaning “slowness of movement,” is a hallmark symptom of Parkinson’s disease. It manifests as difficulty initiating and executing movements, causing tasks like buttoning a shirt, getting out of a chair, or turning over in bed to become challenging. Bradykinesia can also affect automatic movements like blinking and arm swing while walking.

Carbidopa-Levodopa: (kar bi DOE pa; lee voe DOE pa) treats the symptoms of Parkinson disease. It works by increasing the amount of dopamine in the brain, a substance which helps manage body movements and coordination.

Cogwheeling: A snapping or clicking sound in muscles, also known as cogwheel rigidity, is a type of muscle stiffness characterized by a ratchet-like, jerky movement felt when a limb is passively moved by another person. It’s a common symptom in Parkinson’s disease, particularly when the affected limb is also experiencing tremor.

Dopamine: Dopamine is a neurotransmitter and hormone that plays a key role in the brain’s reward system, motivation, and movement. It’s often associated with feelings of pleasure and satisfaction, but also contributes to wanting, attention, and learning. Dopamine is involved in various bodily functions, including mood regulation, sleep, and even immune responses.

Dyskinesia: Dyskinesia in Parkinson’s disease (PD) refers to involuntary, uncontrolled movements that can occur as a side effect of levodopa (see above) a common medication used to treat Parkinson’s. These movements can manifest as fidgeting, writhing, or swaying, and are distinct from the tremors and stiffness that are primary symptoms of Parkinson’s.

Fatigue: Fatigue is a common and often debilitating non-motor symptom of Parkinson’s disease. This fatigue is distinct from typical tiredness and can significantly impact daily life, affecting physical and mental well-being. It can manifest as a deep, pervasive weariness that doesn’t improve with rest and can hinder concentration and motivation. It is often described as the sort of exhaustion that makes it feel impossible to move, as though one has no energy at all. Patients report a deep physical weariness that’s different from sleepiness.

Hypophonia: a quiet voice is a common symptom caused by the disease’s impact on the muscles involved in speech. This can manifest as a reduced volume, monotone pitch, and breathy or hoarse quality to the voice. People with Parkinson’s may feel they are speaking at a normal volume, but others perceive it as too soft or even inaudible. 

Hypomimia:  also known as facial masking, hypomimia is a common symptom of Parkinson’s disease characterized by reduced facial expressions and a mask-like appearance. This occurs due to the disease’s impact on facial muscles, making it difficult for individuals with Parkinson’s to express emotions, thoughts, and intentions. It can lead to misinterpretations and social challenges.

Hyposmia/Anosmia: a reduced sense of smell, is a common early symptom of Parkinson’s disease (PD) and can precede the onset of motor symptoms by several years. It is estimated that around 90% of early-stage Parkinson’s patients experience hyposmia. A reduced ability to smell, or even a complete loss of smell, can be an early indicator of Parkinson’s. Individuals may notice they can’t smell certain foods or other strong odours. 

Micrographia:  characterized by small, cramped handwriting, is a common symptom of Parkinson’s disease. It can manifest as a consistent reduction in letter size or as a progressive decrease in size as the person writes.

Musculoskeletal Pain: is a common non-motor symptom in Parkinson’s disease (PD), affecting a large percentage of individuals with the condition. This pain can manifest in various forms, including muscle aches, joint pain, and bone pain, and is often linked to the disease’s impact on the musculoskeletal system. 

Nausea: Nausea is a common symptom in Parkinson’s disease (PD), stemming from both the disease itself and its treatments. It can be a side effect of dopaminergic medications like levodopa, and can also arise from impaired stomach emptying (gastroparesis) or issues with the enteric nervous system.

Periphereal Neuropathy: Numbness in Parkinson’s disease is often related to peripheral neuropathy, a condition where nerves outside the brain and spinal cord are damaged or dysfunctional. This can cause a range of sensory disturbances, including numbness, tingling, and pain. While not a primary motor symptom of Parkinson’s, peripheral neuropathy is more common in people with Parkinson’s than in the general population. Possible factors include aging, diabetes (which is more common in people with Parkinson’s), and potential side effects of medications used to treat Parkinson’s, like levodopa (see above). 

RBD: REM sleep behaviour disorder (RBD) is a sleep disorder in which you yell, scream, or physically act out your dreams unknowingly while you’re asleep. 

RLS: Restless legs syndrome (RLS) is a movement condition that causes a strong urge to move your legs when you’re resting. You may also feel sensations like itching, pulling, crawling or throbbing. 

Substantia Nigra: In Parkinson’s disease, a key factor is the loss of dopamine-producing neurons in the brain, specifically in a region called the substantia nigra. This loss leads to a decrease in dopamine levels, which are crucial for controlling movement, muscle control, and balance. The reduced dopamine disrupts the normal communication between brain cells, causing the characteristic motor symptoms of Parkinson’s, such as tremors, rigidity, and slow movements.

Tremors: Besides the hands, tremors can occur in the jaw, lips, legs, and even internally (as an internal shaking or electrical sensation).

Please note that some of the crappier PD symptoms are actually a side effect of levodopa...the very medication that I, and almost every other person with Parkinson’s, uses to deal with all the other symptoms. All those crazy jerking movements you see with Michael J. Fox?  Those are side effects of our prescribed drug of choice. Dyskinesia does not happen to everyone taking levodopa…several factors can increase the likelihood of developing dyskinesia while taking levodopa:

The irony is rich, non? Three times each day, when I swallow two more of those levodopa pills, I wonder…when/if the dyskinesia will hit.  But seriously, it’s either take the pills and walk or not take the pills and grind to a staggering halt.

Is it shit or Shinola? Sometimes that’s hard to decide. But surely I digress…

It’s the age-old damned if you do, damned if you don’t…except in this instance, I know the benefits (thus far) outweigh the potential possibility of dyskinesia.

This is not a complete listing of all my new words, but it’s a good start. I don’t want to overwhelm you with too many crazy pronunciations.

Thank you for joining me on this Word Power quest.

My dad would be proud of you…but more than likely, he’d tell you a good clean Reader’s Digest joke.

Maybe next time…

The post Increase Your Vocabulary! first appeared on Colleen Friesen.

Baxter is the Best

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.

Seriously.

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.

O Canada – A Weird New World

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.

Thank Heaven for Kevin

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.

The post Fun Facts and Buttered Steaks first appeared on Colleen Friesen.

It’s been almost two weeks since the calendar flipped to this latest year; two weeks filled with the continuing firehose of bad news and climatic craziness.

I am not sure how much of my ongoing fatigue is induced by Parkinson’s and how much is just exhaustion from all that is going on in the world. How does one begin to tease these things apart?

So I try to be more conscious about limiting my news, but unfortunately, some of the symptoms of Parkinson’s include, fatigue, apathy and depression. There are more days than I want to admit, when it feels like I need superhuman willpower to to roust myself from my chair. It’s bad enough that I can’t find the energy to move but it is compounded by my mother’s voice as she admonishes me not to have a ‘pity party’.

Mom died at 63. I was 28. And now I’m 64. So although she has been dead longer than she was alive in my life, her voice has never diminished. I assure you that this particular maternal caution is not at all helpful. But hey…it is said that awareness is the first step and I am ever so aware that these old default recordings are not the truth.

I am not pitying myself. All I have to do is look around and know that I have been pretty lucky and that everyone eventually has to deal with some less than perfect health or circumstances. I honestly have never gone to the ‘why me’ state of mind.

More correctly, I think the question should be, “Why not me?”.  In fact,  “Why not anyone?”.  I think it’s more remarkable that, for the most part, our incredibly complicated bodies work at all…especially when you think of how many things can go wrong.

It is through this series of self-examination questions that I can refute my mother and figure out what’s happening. Examined in this way, I can determine that, a) I am not having a pity party, thank you very much, and b) there is a scientific and physiological explanation for my low energy, because here’s the thing…Parkinson’s is a cruel and (mostly) an invisible disease.

Because of this invisibility, more than one person has kindly told me I look great. Hale and hearty…indeed.

I have made the same based-on-appearances mistake at the one and only Parkinson’s support group meeting I went to. The woman seated next to me looked so healthy. I was feeling encouraged to see someone who had already shared that she’d had Parkinson’s for more than a decade.  She was obviously much older than me, so hey, I said to myself, she looks amazing so maybe this whole Parkinson’s thing won’t be so bad…

And then it was her turn to speak and she very simply said, “It’s been hell. Unrelenting hell.”

Still, it serves no one, if I take someone’s kind comment and insist on correcting them with how crappy I feel. Not only does it make the well-intentioned person feel awful, but by insisting on how shitty I actually feel, my words reinforce and remind me to focus on the worst. And quite honestly, I don’t want to go on with a litany of symptoms.

Besides, sometimes I actually do feel pretty good.

So why am I telling you all this? Because I believe, that, like me, you want to say/do the right thing and when you tell me I don’t look sick, I know you mean well, but you’re diminishing my experience. Parkinson’s is a shitty game of whack-a-mole. What I’m dealing with changes constantly and is not necessarily visible.

I might be walking with you and look like I’m doing great, but most of the time I am conscious of every bloody step. I am trying to prevent my ankle from turning in, my hip and thigh muscles are screaming and more often than not, I am fighting a feeling of nausea, a headache or bone-crushing fatigue.

I am writing this in the hopes that enough people will read it and I won’t have to have this conversation directly. I don’t want to be Parkinson’s poster child, but similar to my aforementioned self-examination concerning my mother’s erroneous voice, consider this as my public service announcement offering an opportunity to learn some new language.

Please know this; I am not trying to make people self-conscious but perhaps just a little more conscious.

Because words matter.

Besides, this kind of language awareness works for more things than my particular disease. If you’re interested in learning more, please check out this link.

Thank you for your understanding.

The post Why Are You Telling Me This? first appeared on Colleen Friesen.

“As you grow older, you will discover that you have two hands,

one for helping yourself, the other for helping others.”

— Maya Angelou

Remember when you were a kid and you’d say, “Let’s play pretend.”

Let’s revive that game shall we?

Take a deep breath and join me in imagining that we’ve been transported into a parallel universe. This place looks remarkably like our current planet, maybe a little brighter, a little shinier, but more than the exaggerated colours, there is one major difference in how one lives.

In this new place, you discover that everyone is assigned another human that becomes their lifetime responsibility. This person is beyond the regular responsibilities found in the usual relationships with parents, children, siblings, friends or cousins.

You learn that as soon as you’re of an age deemed to be independent, this other person that is assigned to you must be your absolute priority.

Your job is to advocate on their behalf. You go with them to any medical appointments. You make sure they are eating properly and drinking plenty of water. You teach them to quiet their mind with meditation. You explain to them the benefits of sunscreen. You make sure they get enough exercise. You work hard every day to let them know they are loved and cared for. You show them how to care for their skin with oils and lotions. Your ultimate assignment is to help them learn to love themselves completely and without reservation. Obviously, this is not an easy assignment.   It is a big responsibility because you still have all your usual relationships that need to be maintained and nurtured.

But this, this special lifetime project, is understood to be your utmost priority.

So…you’ve probably figured this out by now. This is not about a “let’s-pretend-place”.

And the assignment? The human being assigned to you…is you.

You and me.

We are the projects.

I am my assignment. It is up to me and me alone to properly care for myself. Like you, I’ve been cognizant of these things but until my Parkinson’s diagnosis, I’m pretty sure that if there had been an exam, my results wouldn’t have received top marks.

My health is now my absolute priority. It is really the only priority and, as it turns out, that has been true all along. I just didn’t follow through on it like I do now. Now, my day is taken up with taking care of myself.

The means a walk in nature every morning.

Some days are definitely harder than others. But whether I’m moving slowly or some new awkwardness has presented itself, watching Baxter’s ears do their happy bounce as he explores every inch of the trail, is its own form of healing.

Prioritizing my health means coming home to stretch, to add some strengthening exercises, and to set the meditation timer for 20 minutes. It means being consistent in taking my pills at 7:00 a.m, noon and 6:00 pm every day, which also means not eating before or after for 30-60 minutes so that my body’s digestion doesn’t compete with the absorption of the medicine.

Every day, I focus on the best intake of fruits and vegetables. I drink tons of water and am sure to schedule some sort of social interaction as a daily part of my ‘medicine’.  I fully understand that creating, whether with paints, collage, photography, music or cooking is not an indulgence. It is an absolute necessity.

We have lived in Kimberley for just over six years and until now, I had never set foot in the aquatic centre. Now I  go to the pool twice a week, building my endurance with each slow lap. Almost every day, I play the piano. And each time, I smile and say, yes mom, you were right. Thank you for pushing me to practise (admittedly, she’s a bit smug about it all, but still I thank her. It seems the least I can do after all the hell I put her through).

I stumble through new pieces and imagine that each time I find the correct note, I am helping build new synaptic connections…working hard to lay new tracks in my brain.

I nap when I’m tired. Sometimes I drink tea and simply watch the branches stir in the breeze.

Daily, I randomly remind myself to take deep breaths.  Slow inhalation. Slow exhalation. Repeat.

Quiet the breath. Quiet the body.

All of this is simply an effort to support my body/my mind/my spirit in the best way possible.

We are each born with our singular constellation of stardust and light.

Our responsibility is to care for our uniquely perfect selves so we might shine as bright as possible…because truly, like on my pretend planet, we are responsible not only to ourselves, but to each other.  And you never know whose path you might be helping to illuminate.

Shine bright my friends.

The post Let’s Pretend first appeared on Colleen Friesen.

France – Colleen Friesen

I grew up going to funerals.

As a kid growing up on Cherry Street, in Mission City, British Columbia, I presided over all the neighbourhood pet funerals. It was a busy street and back in that era, dogs, cats and kids, all roamed freely. Too, there was always a smashed robin or two that hit our big living room window, so my funeral business was pretty brisk. I was allowed the back strip of dirt in the garden for my cemetery. I would dig a hole, place the dead animal carefully in the fresh earth, read from the Bible, make my friends sing a hymn or two and paint big crosses on fat rocks to serve as headstones.

I gained all my funereal expertise from the Cedar Valley Mennonite Church. In our world, it was generally understood that everyone in the congregation would attend all the funerals, so I had plenty of time on those hard pews to learn the rituals.

As well, Mom never missed reading the obituaries every Wednesday when the Fraser Valley Record newspaper showed up, and, of course, there were the funeral reports broadcast from the brown and cream radio. The transistor, forever tuned to CFVR, sat on the window sill above the kitchen sink. Every day, the funeral reports came on right after the hog market report.

At night, once Mom had prompted me through my prayers, I would lie in bed as random headlights would pierce the curtains, pushing black shadows around my room. On nights when I felt unjustly accused or punished, I would imagine my funeral. Oh they’d feel horrible and wish they’d treated me better. My indignation was matched only by my feverish imagination. I saw myself in the open casket at the front of the church and heard the crying and apologies.

They’d be so sorry.

So when I read Tom Sawyer for the first time, I eagerly took in the scene of Tom and Jim witnessing their own funeral. I remember that reader’s thrill of realizing I was not alone in imagining these things.

My fascination with cemeteries and death has continued. Whenever we travel, I have made it my mission to visit as many cemeteries as possible. I love seeing how each culture deals with their dead with their unique customs, rituals and beliefs.

Greece – Colleen Friesen

By now, I can hear your question, “Where, Colleen, are you going with all this?”

First, let me digress and back up a little.

My mom suffered from depression. Of course, back then we never named it or discussed it. It was only as an adult that I understood what she might have been dealing with.  I was told that her little blue pills of Valium (and maybe that’s what she was told too) were for her back pain which was ongoing and often debilitating.  But more than back pain, I think Mom was often just sad. To be fair, between the funeral reports, the obituaries and the bad news shared via her telephone Prayer Chain, my mother had no shortage of sources for that sadness.

But I think it started long before that. There are very few images of my mom but the one I recall best is a black and white photo. She is a solemn blonde-haired five-year old girl standing beside her siblings as they surround the open casket of her mother. The wood coffin is on sawhorses in a cold looking Saskatchewan patch of hard-packed dirt. The newborn twins are not in the picture.

Maybe her fascination with funerals, and hence mine, started then?

There is so much I would ask her now but Mom’s been dead for 36 years and when she was alive, her fervent beliefs didn’t allow for many heart-to-heart conversations beyond her begging me to repent and ask Jesus into my heart.

In my last post, I wrote about my Parkinson’s diagnosis. It felt like a very necessary thing to do. It was/is a way for me to take control of my own narrative because, quite frankly, this disease has left me feeling decidedly not in control. And isn’t writing, or any act of creation, a way of transmuting emotion, whether pain or joy, into some sort of art? Something outside of ourselves. Something tangible and separate?

Life as art? Art as life?

What I had not expected, and was not prepared for, was all the incredible messages of support and kindness that were sent my way.

So here, finally, is where all this is going…all those messages, dear readers, made me feel like I had been transported to my own funeral and, like Tom Sawyer, was listening in on a collection of eulogies.

Eulogies about me.

Except, like Tom, I am alive. Present. Here. And so grateful.

All of this is a very long way to say thank you.

Thank you for reading. Thank you for being in my life. Thank you for the kindness and love and all the support.

I have a request.

Like you did for me, please keep reaching out to the people you love, and tell them now, while they’re alive and in your life, all the wonderful things you’d say about them at their wake.

Because I promise you this…unless they’ve faked their death like Tom, they won’t hear a word you say at their funeral.

Tell them now.

Take it from me and Tom.

We happen to know a thing or two about funerals.

Canada – Colleen Friesen

The post Say It Now first appeared on Colleen Friesen.

Enter the Mystery

“When,” asked my doctor as I walked toward her in the clinic’s shiny hall, “did your left arm stop swinging?”

“It’s not moving? Maybe I’ve had a stroke…” I laughed at my joke.

She, however, did not.

I had made this mid-May appointment for several reasons.

I’d recently sprained my right ankle. A year ago it had been my left ankle, twisted over on perfectly flat pavement. It too, had been deep blue and swollen.

Also walking was getting harder and harder. My left hip and muscles would get tighter and tighter and no amount of ibuprofen and Tylenol would help. I hadn’t been able to complete our April walking trip in Spain.

Spain

I was walking slower and slower and couldn’t speed up no matter how much I willed it. Did I mention my calf muscles were permanently tight and could not be stretched out of their rigidity? Overall I just felt so painful and stiff. It was the worst after sitting, I found it harder and harder to start moving again.

My right shoulder was screaming every time I made a wrong move and it turned out there was many different and varied ways to make a wrong move.

Also, my massage therapist had asked me when I developed the tremor in my left hand. “Tremor?” said I. “That just happens now and again. It’s nothing.” She asked me when my next doctor appointment was and, since I was going soon, to please mention the tremor. She repeated her advice several times.

And the weirdest thing was that I felt like I’d forgotten how to use a fork…for the last year, I’d been surreptitiously watching people eat and trying to understand why I couldn’t remember how to use my fork properly. It just felt inexplicably wrong and for the life of me I no longer knew how I’d done it before.

Finally, after my doctor had done all the tapping, poking and a weird little finger test, she looked at me…”I’m sorry,” she said, “but I think you have Parkinson’s.”

I laughed, “But I’m the one with the genetic marker for pancreatic cancer, so hey, this is good news compared to that, right?”

That Colleen…what a kidder. Ha fucking ha.

She left me with one more question, “Has  your writing gotten smaller?”

“What? Nope.”

“Go home,” she said, “and look up Parkinson’s symptoms and see if you find any matches with what’s going on for you.’

Kevin and I spent the next hours and subsequent days on Parkinson’s sites. But first, I pulled out my journals from a couple years before and looked in fascination at how much smaller and tighter my current cursive was compared to the older journals. How had I not noticed?

It was quite apparent, by the time we’d looked at enough medical sites, that there was no doubting the diagnosis. If this was an exam, I had ticked all the boxes for a score of 100%.

It sank in. It wasn’t funny. In fact, I was terrified.

Spanish Madonna

I am writing this while stretched out on our deck’s outdoor sofa. Soon, my alarm will chime, a melodic ringtone that reminds me at 7 am, noon and 6 pm that I must take two more levodopa-carbidopa tablets prescribed by the neurologist who confirmed my doctor’s diagnosis.

I am no longer the woman who proudly answered any questions about medications with, “Nope. I only take vitamins.”

Oh my. I was always so smugly pleased with my answer.

What a difference a day makes eh? Now I carry around a week’s worth of 42 pills ensuring that I never miss a dose. I refill my pill holder from a prescription that comes in a tumbler-sized bottle.

I feel the need to address that former smug version of myself and say, “See?!”

But see what exactly?

I guess it’s this: Yes, we can do our best, drink all the water, eat the piles of veggies, do our exercises, eat our vitamins…but there are other forces at work…like ticking genetic surprises that reveal themselves slowly with mysteriously random symptoms that appear unrelated, until finally, taken as a whole, they reveal an incurable neurodegenerative disease.

Just like that, I am no longer the woman who needs no medications.

So here we are.

Or more correctly, here I am.

The days now are filled with strategies to cope, to counter, to manage. There are days when the fatigue leaves me washed up on the island of our bed. But then, like so many others who are living with their own health battles, it changes and morphs and I find I can move again and the pills do their work and I meditate and I paint.

I work on a collage. I meet up with a friend. I go on short walks. I swim. I laugh. And (who am I kidding?) often, I cry.

But every day I remind myself to remain present. Do not think about the future. That is unknown and not to be imagined. It is definitely best not to go there.

Be. Here. Now. The lesson I’ve been trying to learn all my life has been fast-tracked and has taken on a new imperative.

Here’s what I know. Each morning, Baxter, sighing his puppy-dog sighs, curls his back into my leg.

I write in my journal in my once-again large looping cursive (thank you meds) and Kevin hands me a perfect cinnamon-dusted cappuccino and I know that, right here, right now, I am so lucky.

I am so grateful and I am so damned happy to be alive.

Carpe diem darlings. It’s all we’ve got.

The post Be Here Now first appeared on Colleen Friesen.