Tag: #awareness #advocacy #parkinsonsdisease

Bad Timing and the Perils of Baking With PD

On By ponderingpdIn Living with Parkinson'sLeave a comment

Mornings are better for me. I am more alert, more flexible, more focused. Afternoons are alright, but if I’m going to crash, it will happen late afternoon. Sometimes fatigue and stiffness just take over.

So I should have known better than to tackle making muffins at 3pm. But I had my new stand mixer so that would make the task easy.

Nope. I soon recognized my rigidity getting tighter as I gathered ingredients. With a very stiff upper body, I slowly and carefully measured each ingredient and got most of them into the bowl successfully. Everything but the eggs. As I was pouring them into the bowl my arm decided to move erratically, (dyskinesia) and my hand hit the mixing blade and the eggs hit the floor.

Swear words were spoken. Clean up was done. Muffins got made. And they turned out pretty good! But from now on, muffins will be made in the morning! (and I’ll leave the mixing blade out until I’m ready to use it!)

Am I Unhealthy?

On By ponderingpdIn Living with Parkinson'sLeave a comment

At a recent periodontal intake appointment, I was asked to describe my current overall health. I wasn’t sure how to answer this question. How does having Parkinson’s impact my overall health? Does having PD identify me as one who is in poor health?

My initial response to the question asked was; “My health is good!” I exercise daily. I eat properly (does chocolate count?). I am at the lower end of the ‘healthy weight’ on the BMI scale. I don’t smoke. I rarely drink alcohol anymore. I don’t have high cholesterol or high blood pressure. My last blood panel produced normal results. I follow the rules of healthy living. I feel happy. Therefore, I must be healthy. Right?

But I also have Parkinson’s Disease so I quickly clarified my first response with; “But….” and I provided a short tutorial of my life with PD; tremor, stiffness, neck pain, back pain, low blood pressure, balance issues, hyposmia (inability to smell), sleep disturbances, swallowing issues, and dyskinesia. I take medications. I see doctors regularly. I feel sad. Therefore, I must be unhealthy too.

Turns out that you can be both healthy and unhealthy simultaneously. Having Parkinson’s Disease (and likely other diseases would fit here as well) involves managing a collection of dichotomous thoughts, feelings, and actions all at the same time.

Some days are bright. Some days are gloomy.

World Parkinson’s Day 2025

On By ponderingpdIn Living with Parkinson's1 Comment

It would appear that I am getting an early start to World Parkinson’s Day (WPD) as it is 2:38am and I am wide awake! You are wondering if maybe I’m just so super excited about WPD that I’m unable to sleep? Nope. Sadly, sleep disturbances are just another weapon that Parkinson’s Disease keeps in it’s arsenal of things to mess us up.

With little else to do at this hour, writing seemed an appropriate task. And as this day of PD acknowledgment approached, I’ve had a collection of thoughts about how to mark the day. I think this is it;

WPD commemorates the birthday of Dr. James Parkinson, who first identified the condition in 1817.

Happy Birthday Dr. Parkinson. And thank you for giving your time, and name, to the disease that is shared by so many. The gift that seems to keep on giving. In 2021, 11.77 million people worldwide had Parkinson’s disease and projections suggest this number could potentially reach 25.2 million by 2050 (1).

In 1997, Parkinson’s Europe and the World Health Organization established World Parkinson’s Day. The purpose is to raise awareness about Parkinson’s disease, advocate for better care, and spur research. 

So here’s my sleepy contribution this year:

  1. Awareness: At the moment, sleep is a problem. This could be from pain, vivid nightmares, REM sleep disorder, stomach upset, restless leg syndrome, tremor, or insomnia (these are all part of the PD all-inclusive package). Every night is a different scene.
  2. Advocate: I’m finishing up this post at 4:22am. I share my mess because I am 1 in 12 million. We need better treatment. We need a cure.
  3. Research: Thank you to all those who take on PD for their research. Keep going. Talk to us, the people with the disease. Researchers could hold the key.

**At the end of the day (or the beginning of the day…or the middle of the night…), there is always a silver lining: A benefit to sleeplessness is the opportunity to be up to watch the sunrise!

(1) Luo Y, Qiao L, Li M, Wen X, Zhang W and Li X (2025) Global, regional, national epidemiology and trends of Parkinson’s disease from 1990 to 2021: findings from the Global Burden of Disease Study 2021. Front. Aging Neurosci. 16:1498756. doi: 10.3389/fnagi.2024.1498756

Running on Empty

On By ponderingpdIn Living with Parkinson'sLeave a comment

I’m alive again!

Just coming off of a low blood pressure full-body take over! This happens every now and then when I lose sight of my salt intake. And yes…it is related to Parkinson’s Disease.

I have freely pocketed salt packets from every dining establishment that I frequent and I stash them in my jackets, my car, my bags, my wallet etc. I keep salt on hand, because I never truly know when the onslaught of fatigue, nausea, dizziness, and weakness will hit. Most often a hit of salt will do the trick, but every now and then I experience a multi-day knockdown where I feel stuck, paralyzed, and unable to function clearly. I cancel appointments, handover my car keys, and cease all exercise.

Without being able to exercise, my body gets stiffer which only adds to the downward spiral of symptom mayhem.

I follow the advice of my doctors, the tips below and hunker down with a bag of salty snacks. Eventually it passes. I have my own blood pressure monitor for convenience, and although the official numbers are confirming, I know all ‘the feels’ of low BP and my benchmark BP.

If you are interested in learning more about low blood pressure and orthostatic hypotension as it relates to PD, click here: Low Blood Pressure – Micheal J Fox Foundation or here: Low Blood Pressure – Parkinson Canada

Retrieved from: parkinson.org. 2023 https://www.parkinson.org/sites/default/files/documents/low-blood-pressure-2023.pdf

Retrieved from: vecteezy_chronic-tired-woman-exhausted-girl-female-character_14028874

Always on My Mind

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“Parkinson’s is 24/7, so honor that.” (Davis Phinney Foundation)

I am becoming more and more aware of the many things that people with Parkinson’s have to constantly consider throughout their day in order to make it through. Things that most people can do without even really thinking about how to do them. But PD is always there. Relentless. Painful. Nagging. It is always on my mind.

Clearly I am a fan of alliteration, (see: Reality, Rigidity, Rain or Accept, Adapt, Adjust or Puzzles, Pandemics, Parkinsons or Sandals, Swimming, Sunshine), but the following are the first things that quickly came to mind when I began this piece; sleeping, swallowing, and (not) slipping!

SLEEPING.

Sleeping is never guaranteed. Proof of this is that is currently 3:34am as I type this post. Tomorrow – actually today – is Sunday and the only plan I have is to watch the Bills demolish the Broncos in this first weekend of the NFL playoffs. So hopefully, I’ll grab a nap somewhere during the day to catch up on lost sleep. But this lack of sound and predictable sleep, when followed by an active day ahead, can lead to cancellation, rescheduling, or a miserably tired and shaky outcome. The reason for not sleeping is most often pain and discomfort caused by tense/cramped/rigid muscles. Preparation is the key to successful sleep. This includes a variety of natural remedies; magnesium supplements, not eating after 7ish, pickle juice (reduces muscle tension), zero alcohol, heat pads, extra half-dose of Levodopa, Tart Cherry Juice (natural sleep aid – similar effects of how one feels after a turkey feast!), yoga, mindfulness/meditation, and sleep stories. (I highly recommend: Cillian Murphy Sleep Story which I have playing as I write this post). In combination, sometimes these routines and rituals don’t always work – sometimes nothing helps bring rest. I’ve come to dread ‘bedtime’ as I never know what Parkinson’s has in store for me. Nevertheless, I keep searching for the magic answer.

SWALLOWING.

Swallowing is also never guaranteed. I choke on food, water and pills just a little too often. Swallowing difficulty, called Dysphagia (a coughing-choking event) is common with Parkinson’s Disease and can lead to aspiration (a silent-choking event). They say that as PD progresses, aspiration is the most common cause of death due in part to having the disease. It’s very unpleasant, completely embarrassing, and also quite frightening. I am growing more and more uncomfortable sharing meals with people for fear that I will scare them with my performance. Mindful eating is the key to surviving every meal or snack. Thick cheeses and breads are off the menu. Cutting food into small pieces, chewing slowly and completely, maintaining good swallowing posture and not talking while eating has to be considered with every bite.

SLIPPING.

Slips, trips, and falls are pretty much always guaranteed if I’m not paying attention. While going up and down stairs is a rote activity for most, I need to consider each step carefully. Hand railings are crucial to success as feeling off balance can find me leaning too forward or backward. Outings that involve stairs or uneven terrain need to be considered before I attend. Nose-bleed seating ( the cheap seats) is not an option as steep, narrow, rail-less stairs are an accident waiting to happen. Proper footwear, careful planning, and pre-googling unfamiliar destinations is a pre-requisite.

Cillian’s sleep story is coming to an end, therefore I will stop here as well. It’s 4:21am and I’ll give sleep another attempt. There are many others pieces of PD that weigh my mind down so there is likely a Part 2 in the future, but my eyes are telling me to let them close and I need to listen.

image from: http://www.7cups.com/qa-anxiety

Ireland is Medicine

On By ponderingpdIn ExerciseLeave a comment

“Be always searching for new sensations. Be afraid of nothing.” Oscar Wilde

I recently returned from a spectacular trip to Ireland with two very special life-long friends.

One week of the trip involved hiking the Dingle Peninsula – a beautiful spot on Ireland’s west coast. Knowing that I would be clocking a minimum of 20-25km/day, I started preparing months in advance. I invested in proper equipment and ramped up my mileage daily. I read and researched as much as I could about where we would go and what we would see. I packed and repacked clothing for the predicted rain, wind, and cooly unpredictable Irish weather (yet we only witnessed sunshine and warmth!). Unfortunately, I also had to pack Parkinson’s Disease, so additional preparations needed to be considered; strategic packing of PD medication, pain meds, supplements, constipation aids, sleep help (melatonin), and salt for low blood pressure.

I also brought along the many worrisome thoughts in the back of my mind; Will I sleep? What happens if I fall? Will I be able to do this?

But those thoughts waned very quickly and I can proudly report that I successfully completed each leg of the journey! And aside from a wee blister on my toe, I completed it without pain, without injury, without doubt! Without falling, without failing, without frustration!

For some reason, my PD symptoms seem to have dulled while I was away? And as I seek to understand why I felt so well in Ireland, my usual symptoms have resurfaced in their regular form; sleeplessness, stiffness, pain, TMJ pain, fatigue etc.

Could it be that symptoms were not as prevalent because;

  • I was distracted by travel and the beauty of the country – travel is medicine?
  • I was having so much fun with friends – laughter and love is medicine?
  • I was outside more often than inside – fresh air is medicine?
  • I was logging 20-25kms each day – exercise is medicine?
  • I was not spending idle time in front of a laptop or television – poor posture = pain?
  • maybe my own bed/pillow is uncomfortable – good sleep is medicine?
  • the Irish/ocean air is healthier – (of course it is)?
  • there is something in my immediate environment that is triggering – wifi, pesticides, pollution?
  • there is something in Guinness and Dingle Gin that is medicinal – (yeah, I wish)?

Ultimately, it is a combination of all of the above (maybe not the alcohol so much!). But I’m leaning toward screen time as the leading culprit for my pain – this is why it has taken me a week to finish this post! This is a convenient reason for me to explore because it is definitely within my control. I am reducing and limiting time spent with my laptop and television and I’ll be sure to let you know if changes occur.

And just in case nothing changes, I am already planning our next trip!

Sleep hurts

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I just want to sleep. The kind of sleep where you close your eyes at 10pm and wake up at 7am.

No pain.

No vivid dreams.

No restless legs.

No bathroom trips.

No sweating.

No pain. (yes, I know that I already said that, but it bears repeating as it shouldn’t hurt to sleep!)

If I could buy it, I would gladly empty my wallet. In fact, I have! Melatonin, magnesium, cooling pillows, moisture-wicking pyjamas, linen sheets, and a variety of prescription and over the counter pain meds. I could write a book on the ‘sleep hygiene’ habits which I have tried to incorporate into my routine. Some items/ideas work briefly, but nothing has brought me that ‘knocked out’ sleep that I crave.

It is 3:10am as I write this post. I know…I know…screen time is hazardous to your sleep! I rarely turn to technology in the middle of the night, but sometimes I need the distraction and getting up helps relieve the pain and restless leg issue and it also rescues me from the terrors in my ‘oh so realistic’ dreams.

It shouldn’t hurt to sleep.

Learn more here: Good Sleep with Parkinson’s: An Oxymoron?

Counting sheep PNG Designed By CHENXIN from https://pngtree.com/freepng/hand-drawn-cartoon-night-insomnia-counting-sheep-illustration_5519611.html?sol=downref&id=bef

Progress

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“How ironic is it that I take meds for a movement disorder and their side effect is a movement disorder?”

– Me

Over the past month or so, I have noticed that the tremor in my left hand/arm has gotten worse.

I don’t like this.

At the first indication, I chalked it up to not getting enough sleep, eating too much sugar, or not getting enough exercise. But even as I have attempted to correct for these, the tremor is persisting. My MDS (Movement Disorder Specialist) has suggested upping my meds from 3 pills/day to 4 pills/day.

I don’t like this either.

Generally, since D-day in 2017 (Diagnosis Day), my symptoms have remained rather steady. The dosage of levodopa has not changed in all that time. And now, I am facing the reality of Parkinson’s…it is progressive.

I am incredibly resistant to the idea of taking more Levodopa;

  1. The side effects of increased and continued use of Levodopa are not pretty. The nastiest is the development of Dyskinesia (involuntary purposeless movements). Not good. I have already observed some mild Dyskinetic movements – I don’t like it. How ironic is it that I take meds for a movement disorder and their side effect is a movement disorder? Read more here: Medication side effects
  2. The idea of taking pills four times a day is ridiculous. Currently I’m on an 8-2-8 clock schedule. Upping would mean 8-12-4-8. Add to this the requirement to take meds either 30 minutes prior or 2 hours after protein intake and I think I’ll need a personal assistant! Seems the entire day is planned around meds. I do have a handy little med app on my phone to remind me and I’ve stashed pills everywhere to try to make it easy…but it’s not.
  3. Ultimately, the hesitancy is rooted in my realization that things are progressing (not the good kind of progress). I am a competitive person (some of you are giggling right now because you’ve witnessed this firsthand). I do not want to ‘give in’ or lose to PD.

Contemplating the addition of that tiny extra pill for my brain is a mind game where there is no winner!

Image by Racool_studio on Freepik

The Good, the Bad, and the In-Between

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This past week has been rough. And that prompted me to write about my struggle. But when I logged in, I realized that I hadn’t written since June! I questioned my purpose for writing. It seemed I had fallen into a habit of only writing from a negative lens. Easy enough since Parkinson’s is lousy, but if there is ‘good’ then it needs to be acknowledged.

The Good

* I planned and went on a 13-day Mediterranean cruise! We had never been outside of North America so this was the trip of a lifetime! I was very aware of how PD could make this difficult and planned accordingly. I gave myself permission to alter plans as required, rest when needed, and I repeatedly checked my med count and multiple med packing spots so I would never be without (been there – not fun A Day Without Meds). Planning paid off and the trip was incredible. We logged between 8-10km of walking per day (which as I’ve said before is my best medicine Exercise is Medicine and Exercise is Medicine #2 ) and saw everything that we had hoped to take in. PD took a back seat and I was incredibly grateful.

* I picked up a new hobby! What started out as painting an old dresser turned into a new hobby of refinishing old furniture. There is something very rewarding about stripping off old worn-out furniture, finding the treasure underneath and giving it new life and purpose that provided me with tremendous joy. The energy that I found seemed endless – furniture rescue operations provided me with a natural hit of dopamine that had me on overdrive. I refinished over 10 pieces of furniture. I renovated the laundry room. I refinished and painted my kitchen cupboards and renovated my kitchen. I was unstoppable – obsessed. Not a bad addiction to have though as I’m truly enjoying my living spaces! As the winter weather moved in, I had to stop working. It became too cold in my garage, for both myself and the wood, to continue.

The Bad

* As soon as the kitchen was finished, I got sick. Just a head cold, but it knocked me off my game. My low blood pressure kicked in and poof – I’m on the couch. Fatigue, worsened tremor, rigidity, apathy, dizziness, restless sleep/dreams. It all came back like a wave and I went down.

Why? Well, it could be really simple and I just picked up one of the many viruses that are circulating and this triggered all that defined PD. But I’m starting to think that once I closed up my little woodworking operation, the extra hit of dopamine was sorely missed.

Increased my salt and magnesium intake, and getting my meds on time is working, but at a very slow pace. I know what I need to do; move, get outside, eat well, and find a new purpose. But it is so crazy-hard to do that when your battery is dead.

The In-Between?

There is no such thing. Seems that it is all or nothing. I prefer all.

Santorini, Greece

That’s a Wrap!

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“The best way to lengthen out our days is to walk steadily and with a purpose.” -Charles Dickens

Yesterday was day 55 and the wrap-up to my ‘Strive to Thrive 55’ fundraiser for Parkinson Canada. The goal was to walk 5km a day for 55 days (275km), raise $555, and build awareness of living with PD.

I walked 285km total and raised $2655! Although I had to miss a couple of days to listen to my body, I made up the km on days when everything was working! And that is the reality of Parkinson’s disease – some days are good and other days you find yourself sidelined.

The support that I received from family and friends was so appreciated and truly unforgetable. Words of encouragement and company along the walks made this challenge both doable and fun!

The generosity of your donations was overwhelming;

  • Thank you to my Ottawa family, childhood friends, and classmates going back as far as Kindergarten through to high school! Seeing your names pop up brought back priceless memories and reminded me of how lucky I am to have made lifelong connections with the best people! Thank you so much.
  • Thank you to all of my Barrie friends from Crompton Drive, my OG girls, and colleagues and students from SJP II, MCL, OLG, and SMO who have been a part of the last 29 years and have been there through the thick of it during the last 5 years. Thank you, thank you, and thank you!
  • Thank you to the friends of friends that I have made along the way too. Kindness can come in the most unexpected places. 🙂
  • And thank you to Garth & my boys, my parents, and my sisters. Either face to face or through phone calls & texts, you all help me deal with the day to day of what Parkinson’s dishes out and having you in my corner makes all of the difference in the world. Thank you just isn’t enough.

The last 55 days brought rain, snow, hail, heat, wind, and cold. Luckily, I finished just in time to avoid the forest-fire air-quality issues!

Today, I will take the day off.

Tomorrow, I will invest in a new pair of sneakers!

5 down…50 to go!

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I am feeling completely overwhelmed by the generosity of friends & family!😍

In my quest to fundraise for Parkinson’s Canada by walking 5km/day for 55 days, I have already surpassed my $$ goal!

Also feel very lucky to have the perfect 5km trail around Kempenfelt Bay here in Barrie where Garth and I enjoy walking! And so far, I’ve had 5 days of fabulous sunny/warm weather which has made it very easy to be outside! I think the weather is about to change but I’m hopeful that I’ll stay on track regardless!

If you are able to donate and/or interested in finding out more, click here: https://donate.parkinson.ca/site/TR/FYW/FundraisingYourWay?px=1248856&pg=personal&fr_id=2781

https://donate.parkinson.ca/site/TR/FYW/FundraisingYourWay?px=1248856&pg=personal&fr_id=2781

Awareness?

On By ponderingpdIn AwarenessLeave a comment

“I have Parkinson’s Disease. Everyone in the photo is impacted by it.” -myself on Twitter

Throughout this month of Parkinson’s Disease Awareness, there have been some insightful conversations among PWP in Twitterland. The dialogue really got me thinking. Whose responsibility is it to spread awareness?

Since my own diagnosis 5 years ago, I instinctively jumped on the #awareness train.

I want quality research. I want better treatments. I want a cure.

I have sent letters to and met with politicians, advocated for local fitness programs, participated in research studies, ran/walked in fundraising events, shared a wealth of information on social media, and started this blog all in the name of building awareness of Parkinson’s Disease.

On April 11th, World Parkinson’s day, I posted my ‘awareness’ tweet. But who did I reach? Well, my post was read by other PWP, a handful of neurologists, physiotherapists, and some PD organizations. People who are already ‘aware’ of PD.  So who was my awareness message for? What is my goal when it comes to building awareness?

After much consideration, I think that my attempts are not really about reaching a wider audience, but more about developing an awareness of self, among a community of others who ‘get it’.  There is a little part of me that wants the world to know exactly how I feel  –  the pain, fatigue, stress, the hell that PD can be. Yet there’s another part that wants to hold all of those things privately in order to preserve who I truly am. To be seen simply as Carla.  I don’t want to get lost in the disease.

Prior to diagnosis, I had zero knowledge of Parkinson’s Disease. Why would I? But learning, reading, and writing about it has turned me into an expert.

But here’s the thing…I am an expert when it comes to MY relationship with Parkinson’s – not anyone else’s.

So my take on Parkinson’s Awareness day/month? There are plenty of PD organizations that should carry the ultimate responsibility to tackle awareness. PWP should feel free to choose to get involved or not get involved as they see fit for their own mental health and well-being. If that means spreading messages of hope and optimism – then do that. If that means sharing your pain and your fears – then do that too.

Regardless of our experience and whether we choose to share or not share anything at all, at the very least, we should all be made to feel safe and supported by each other.