I just finished watching Apple Cider Vinegar on Netflix. Based upon a true story, it follows social media influencers and their promotion of alternative cancer treatments. As a person with Parkinson’s Disease, I completely understand the desire to seek out alternative solutions to help treat or relieve symptoms; the need to ‘fix’ things especially when there is no cure for whatever diagnosis you have heard. In my early days, I immersed myself in reading and researching everything out there; fava beans, CoenzymeQ10 and other supplements, gluten-free/dairy-free diets, red-light therapy, diagnosis reversals, hypnosis, and the list goes on and on. Sure, there is certainly a measure of success in how some of these things may help alleviate symptoms, but others have zero merit and the investment required can create a significant hole in one’s wallet. I believe it is extremely important that we carefully consider the source of the information we choose to engage with.
We are living in a moment where oligarchical buffoonery is derailing science and medicine and social media moguls have enabled anybody to control the narrative. Anyone, (myself included) can post their beliefs, experiences, and make suggestions about living with a disease. but ignoring and devaluing Science and Medicine is a dangerous game.
Please carefully consider and fact-check what you are reading. Beware the magic beans and snake oil.
Restless Leg Syndrome is a truly uncomfortable, disruptive, and particularly annoying sleep disruptor. But I found a solution. Actually, I didn’t find the solution, my highly-informed and helpful friend Arrica gave it to me and it worked!
A few sips of dill pickle juice gave me almost instant relief for this skin-crawling, heeby-jeeby, unsettling feeling. I was back in my bed with calm legs in minutes.
Some might suggest that the relief is from the heightened content of sodium, magnesium, potassium, acetic acid, etc. Others believe that the juice activates channels at the back of the throat which “triggers a reflex that shuts down the cramping feeling, by shocking the nervous system and reseting the nerve pathway to muscles all over the body” (Australian Institute of Sport). Stills others believe it to be a placebo. Whatever the cause/effect combination is, it worked for me!
*Remember I am not a doctor so do your research before you try this remedy for yourself! Probably not ideal for someone with heart conditions or high blood pressure. Luckily for me, the only side effect was my scrunched up puckered face in response to the taste!
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.
“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;
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
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.
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!
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.
“Scents bring memories, and many memories bring nostalgic pleasure. We would be wise to plan for this when we plant a garden” – Thalassa Cruso
I have these sensational transplanted peonies from my mother’s garden (my childhood home), and they have successfully travelled with me from house to house for many years. I look so forward to the brief time that they bloom every June.
I also have lilacs transplanted from my Great Grandparents farm and these lilacs have traveled along with the peonies! They are just about on their way out after adding such gorgeous colour to the yard over the last couple of weeks.
Both flowers are well-known for not just their beauty, but more often for their wonderful fragrance. Unfortunately, due to Parkinson’s, I have lost my sense of smell (go to Stop and See the Roses). Hyposmia is one of many unseen and often ignored early symptoms of PD.
Although smell loss/reduction can be of benefit when it comes to avoiding the unpleasantness of skunks, smoking, or sewage, I wholeheartedly miss the smell of the my lilacs and my peonies.
I continue to try, perhaps out of habit, to lean my nose into a bouquet…but I smell nothing except for the memories.
“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!
“If you listen to your body when it whispers you won’t have to hear it scream” – Unknown
I have been walking 5km/day for 21 days straight. My friends and family have raised $2084 for Parkinson Canada. The goal is to do this for 55 days so I have 24 days to go.
But the thing with Parkinson’s Disease is that sometimes it dictates what the day brings. And today it feels like I’m going to have to let it be the boss as stiffness, slowness, fatigue, and tremor seem to be outweighing my attempts to put on my running shoes and set my watch.
Of course, this can all change and I could head out afterall, but experience tells me that this might just be a day where surrender is required.
I have been told, by many, that I am ‘competitive’ (right now I know that some of you reading that statement are laughing as you recall a time when you have suffered through my competitive behaviours!). I don’t like to give-in. But PD has taught me that there are times when making informed decisions is the best option.
If I finish the day without getting the 5km completed, I will be disappointed. However, if I push myself beyond capability, I could end up feeling worse, get dizzy, lose balance, fall, etc.
99% of the time, exercise makes me feel better – loosens things up – encourages flexibility. But right now, I am the Tin-Man; stiff, rigid, stuck and perhaps feeling a little rusty after all of these rainy days.
Just sharing a quick update on my Parkinson Canada Fundraiser; Strive to Thrive – 55!
Day 12/55 days complete.
66km walked.
$1729.00 raised for Parkinson Canada!
The weather has been wet, windy, and cold, and although I have felt tempted to just stay indoors, I haven’t given in! Thanks to Garth for sharing the sidewalk with me often and my friend Anna for coming out on Wednesdays!
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 exercise could be packaged in a pill, it would be the single most widely prescribed and beneficial medicine in the nation.” -Robert Butler, National Institute on Aging
Day 1/55
I couldn’t have asked for a more beautiful day to get started and a wonderful friend for company! 5kms done!
Never imagined I’d be wearing shorts and a T-shirt but the sun was shining and the temperature unseasonably warm for mid April in Ontario. I’ll take it!
I have been overwhelmed by the donations that have come in since my page went live yesterday. Thanks to the generosity of friends and family, we have surpassed my goal of $555!
Thank you, thank you, thank you.
I will share my progress throughout the challenge, but definitely not daily!
April is Parkinson’s Awareness Month and April 11th is World Parkinson’s Day! As a person living with Parkinson’s (PD), I feel compelled to do something to improve awareness of PD and to contribute to research that might someday prevent others from getting caught in it’s hold.
And let me tell you; once you get it – it is yours to keep. Limited treatments. No cure.
More than 100,000 Canadians live with Parkinson’s, a number expected to increase substantially in the coming years, with 30 Canadians – of all ages – diagnosed each day.
April 12th is my 55th birthday and I have decided to mark the occasion by kicking off my fundraiser, “Strive to Thrive – 55” for Parkinson Canada. Since exercise is one of the most effective things that I can do help minimize my symptoms and slow progression, I am setting a goal to walk 5 km each day for 55 consecutive days! I would like to raise $555.00 to support the work towards prevention and/or a cure.
If you find yourself with a few extra dollars during these tough economic times, it would be very much appreciated if you could donate. And if a donation just isn’t in the cards for you right now, you could visit the Parkinson Canada website (click About Parkinson’s tab) and fulfill my goal to improve awareness by reading and learning more about PD.
Parkinson’s is the fastest growing neurological disorder in the world. In the brain, nerves exchange signals through dopamine, a chemical that controls movement. Parkinson’s symptoms occur when cells that produce dopamine die. By 2031, the number of people living with Parkinson’s in Canada will more than double. The support you provide makes a positive impact by: improving the quality of life for people living with Parkinson’s disease and investing in research to prevent it from happening. Hopefully someday we might have a cure!
If you would like to follow along with me, I will be posting updates on
“Sugar is the sociopath of foods. It acts sweet, but it’s really poison.” – Karen Salmansohn
I know it has such a negative impact on me…yet I have such a hard time looking away. Cakes and cookies and creams oh my! Toss in Christmas festivities and the effects are multiplied.
It’s my own fault. For some nostalgic reason, I feel obliged to bake in December. Peanut butter chocolate squares, snickerdoodles, sugar cookie cut-outs, shortbread, etc. Yes, I tell myself that I do it for the kids…but who eats it? ME!
Of course there are scientific connections – dopamine availability, impulse control disorders, microbiome health etc. Just google “sugar and Parkinson’s” and you will find a plethora of scientific journal articles and research into the topic.
I don’t need any further scientific proof or research to confirm that this substance that I love, is tremendously harmful to my health. My symptoms speak for themselves. I am fully aware that sugar does not get along with my gut, my heart or my brain – yet I continue to consume it in unhealthy and immeasurable quantities.
This is it. We have to break up.
There is no better (and more obvious) time to start over, so tomorrow at midnight on December 31st, I will make valiant attempt to make a clean break from processed sugars.
“I hate being sick, I feel like a superhero with no powers.” – Unknown
After almost three years of staying home, wearing masks, getting jabs and boosters, the Covid-19 virus finally struck my family two weeks ago.
This is my first real bout with illness following my diagnosis 5.5 years ago (long time – no sick…I know!), and having gotten through the worst of it, here is what I have learned about being sick when you have a chronic neurodegenerative disease.
Medication: All medication to alleviate my Covid-19 symptoms must be carefully considered so as not to interfere with PD meds. I take two different PD medications; Carbidopa/Levodopa and Rasagiline. CL is a pretty agreeable drug, but Rasagiline ‘does not get along with others’ in the medication playground. Something as mainstream as Advil is out for me. Thankfully, basic acetaminophen is an acceptable friend. However, the shelves of pain relievers and cough/cold meds are pretty much empty right now so options are severely limited.
The shelves at my local pharmacy. Look at all the Advil…that I can’t take!
Exercise: The most effective and accessible treatment for my PD is daily vigorous exercise. With the cough, fatigue, and achy body that Covid-19 has bestowed upon me, exercise is not an option. I am already feeling the setback that this will lead to as the stiffness and rigidity will take over without that essential movement.
Sleep: Sleep disruption and PD is common. Add to that the incessant Covid-19 cough and you get total sleep disfunction. Decrease in sleep leads to increased PD symptoms. More setback.
Isolation: Being contagious means no appointments. No physio. No osteo. I rely heavily upon appointments like this but have had to cancel. More and more setback.
Loss of smell: People have reported losing the ability to smell with Covid-19. Loss of smell (hyposmia) is also an early sign of PD and I lost my sense of smell many years before any other PD symptoms showed up. I wrote about it here: The Earliest Sign. So this particular Covid-19 symptom had zero impact, on me, other than concern over the neurological implications. The nose knows more than you think. Losing your sense of smell, either temporarily or long-term should be a concern for everyone.
Post Covid/Long Covid: According to the Government of Canada website, the most common symptoms of Long-Covid are: “fatigue, memory problems, sleep disturbances, shortness of breath, anxiety and depression, general pain and discomfort, difficulty thinking or concentrating, post traumatic stress disorder” (Post Covid-19 condition). Well, much on this list of goodies is quite similar to what many people with PD live with daily. I sure hope that this virus cruising through my body is not thinking about sticking around – opting to stay dormant and bring on more of the same at a later date.
The Great Unknown: Do I have an increased risk of developing complications? Who knows? From what I have read and been told by my medical team, I don’t think so. But a virus has a mind of it’s own and it will be years before we know the full implications of this pandemic. I had the Epstein Barr virus and the Meningococcal virus in my early 20’s and just look at me now! A virus is an uninvited guest, an intruder whose sole objective is to bring more unruly guests into your home to take over and completely wreck your party. Now it’s time to clean up the mess left behind.
and finally, the most important thing that I will take away from this…
Pondering PD 