“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…
“Friendship is a wildly underrated medication” – Anna Deavare Smith
I started taking Levodopa five years ago immediately following diagnosis. Right from the start, I didn’t notice a significant impact. Other PWP spoke about their on/off times and how they watch the clock in anticipation of their next dose and intended relief. I have never felt that way – in fact, if I didn’t have a reminder set on my phone, I might likely forget to take my meds! I’ve mentioned this to my neurologist, but she felt that the meds were having an impact and that my low dose was beneficial.
I have often toyed with the thought of going off them just to see how they work or don’t work, but have never followed through with my curiosity.
Well, purely by accident, this curiosity was unfortunately answered.
I went away for a weekend with the best-ever lifelong friends and when I looked to take my 8pm dose, I was alarmed to realize that I had forgotten my pill pack. Oh my! I kept this information to myself. I knew this wasn’t life-threatening and I also didn’t want to alarm my friends. The meds were a two-hour drive away and I didn’t want to upset the weekend.
All remained relatively ‘normal’ for the first 24 hours. Time was spent hiking outdoors in the sunshine with two of my favourite people. Laughter, sunshine, and exercise are all producers of natural dopamine which is what I will credit for the initial feeling of normalcy. Without these, I predict I would have felt the ‘off’ period much sooner. But after a full day unmedicated, all hell broke loose.
I did not sleep…all night long. My left side was tremoring just enough to wreak havoc on my ability to calm. By morning, my body was crying for dopamine. I was emotional, stressed, and physically and mentally exhausted.
Upon arriving home, I took my meds and within 30 minutes, calm was restored.
“Almost everything will work again if you unplug it for a few minutes…including you.” -Anne Lamott
Over three months ago, I wrote Waves which described my desire to take a break from all things Parkinson’s related. And much to my own surprise, I am not yet ready to return to advocacy, research, or fundraising.
This is not apathy.
This is not negativity.
This is living.
Summer was warm, relaxed, and filled with great times spent with family, friends, and plenty of days at the beach. (*note: the beach fixes everything!)
Yes, there are moments when symptoms can take some of the joy out of my day and interfere with my plans. But I have a toolkit of strategies that usually enable me to get through those times.
I believe I am currently hovering in a welcome state of ‘plateau’ where disease progression has paused somewhat.
OR… perhaps because my focus has shifted away from PD, I simply haven’t felt/noticed progression.
Either way, I am happy to remain atop this plateau for a while longer.
“But I think that I have already been moving too long in a sphere which is not my own – allow me to paddle in my own element.” – Ivan Turgenev
I held off on posting this for a few days as I feared that it might come off as too negative. But I want this blog to be authentic so here you go…
I’m learning that living alongside a chronic neurodegenerative illness like Parkinson’s Disease might possibly be similar to navigating a wavy ocean. Or in my case, since I don’t live near the ocean, steering a canoe through both fair and stormy weather. Sometimes when the water is rough, you rely on your experience and employ all of your paddling skills to safely make it through the storm. Other times, the waters are smooth and you can take in the scenery as you mindlessly dip your paddle in to move forward.
This is where I want to be. Even though, at times, the conditions may be rough…I want to purposely choose smooth.
Mindless dipping sounds good.
I am taking a break from reading through and deciphering the complicated language and purpose of ‘promising’ scientific research reports. If they find a cure, I’ll surely hear about it.
I am taking a break from advocating and building awareness for Parkinson’s Disease. Releasing myself from the ‘patient pressure’ to inform others.
I am taking a break from trying to read through Parkinson-based books on my bedside table. Fictional escapism will produce better dreams.
I am taking a break from trying all of the latest recommended supplements and dietary changes. I am going to eat the cake.
I am taking a break from Parkinson’s.
Of course, Parkinson’s never takes a break from me, but I can dictate how much I give back to it.
While I am sure I will likely get back on board at some time in the future, for today I’m riding the perfect wve.
“I don’t look at a knife the way I used to. I’m more aware of what it is.” -Neil Young
Since leaving my career, I have made some sporadic attempts at becoming more skilled in the kitchen. Garth has always been the cook, and I’ve been the cleaner-upper! So with more time on my hands, I thought this would be a new hobby, an exciting challenge, and a way to help out.
I took to watching cooking shows/competitions; Masterchef, Jamie Oliver, and the Great Canadian/British Baking Challenge. Always completely impressed by, and envious of, the skill, speed, and knowledge each chef/competitor possessed.
I have discovered that Parkinson’s Disease adds a whole different set of challenges to being effective (and safe!) in the kitchen. Just now, I laughed at the thought of a new reality show; “Masterchef – Parkinson’s Edition!”
Knife skills: there is constant worry that the tremor or the dyskinesia is going interfere and result in slicing/dicing off my fingers instead of the onion!
Speed: the rigidity, stiffness, and slow movement turn Jamie Oliver’s 40-minute meals into 400-minute meals.
Loss of smell: is something burning? I don’t know!
Multi-tasking: those multi-step recipes are killers. I’m better off making soups or one-dish meals to help with focus.
Peeling, paring, grating: Anything that requires my two hands to perform different tasks simultaneously takes time, concentration, and patience. ( I wrote about this in An Apple a Day )
Knife skills: yes, I said that already, but I cannot emphasize enough how scary this part is
My food processors (large and small) have become my best friends in the kitchen and I ask for help with other tasks when my symptoms just won’t cooperate. Other helpful tips are here: Helpful Mealtime Tips
The happiness that I get when my family loves the meal is a wonderful reward.
“Even the hardest puzzles have solutions.” – Unknown
Since the Covid-19 pandemic began a year ago, I have spent countless hours assembling puzzles. I’m not sure how many I’ve finished – too many to count at this point. I get so much joy and satisfaction working on completing scenes ranging from cityscapes to countrysides to underwater dogs…yes that’s correct!
I follow the ‘stay at home’ orders and ‘lockdown’ rules and I remain dedicated to my own personal goal of not getting or giving anyone this virus. Puzzles have been an amusing time-filler. But why am I so consumed with puzzles?
Puzzles are predictable. I like that.
Eventually, you find the answers to where every piece fits, and you are rewarded with a complete picture. This is the opposite of living with Parkinson’s Disease.
Every day is unpredictable.
There are no consistent answers. There is no complete picture. No cure. No cause (in my case).
I spend so much time tracking what works (diet, supplements, meds, exercise, etc.) to alleviate my symptoms (pain, tremor, stiffness, balance, constipation (there.. I said it!), insomnia, apathy, fatigue, speech, etc). What seems effective one day, is useless the next. There is no perfect combination of treatments to solve all that is Parkinson’s.
It feels like I am desperately trying to put together the pieces of a puzzle that is constantly evolving. Just when I think I’ve found the spot for a particular piece, the shape changes.
But even the hardest puzzle has a solution – hopefully somebody solves the Parkinson’s puzzle soon.
I’ll keep working on the Cinque Terre, Italy for now.
“A new season had crept into me, a softer season of acceptance.” Raynor Winn
The Salt Path by Raynor Winn is a beautiful recount and reflection upon a couple’s journey through life’s unplanned events. Coping with a devastating diagnosis (CBD Corticobasal Degeneration), financial ruin, and homelessness, Raynor and her husband Moth set off on a 630-mile trek along the South West Coastal Path from Somerset to Dorset, UK. Somewhat unprepared and financially strapped, the pair are destined for adventures both devastating and wonderful.
It speaks to the incredible value found in; (and it’s all free of charge) spending time in nature, being physically active/pushing physical limits, reflecting/being mindful, and most importantly, appreciating the love we share.
I won’t provide any further details because I would like to recommend you read it, especially if you are dealing with any life-changing events of your own.
For me, this was a book of hope.
“A new season had crept into me, a softer season of acceptance. Burnt in by the sun, driven in by the storms. I could feel the sky, the earth, the water and revel in being part of the elements without a chasm of pain opening at the thought of the loss of our place within it all.” – Raynor Winn, The Salt Path
Planning an overseas trip to Cornwall in 2022 (should Covid 19 be behind us) and I hope to cover some of the same parts of the Path that they travelled!
Looking forward to the follow-up; The Wild Silence
Prior to my diagnosis, I got things done. I made lists. And I checked things off of those lists. I had innate drive, ambition, and I set goals.
The Parkinson’s-associated symptom of apathy is one of the hardest things that I have had to adjust to lately. In fact, I’ve been putting off writing this post because of this unfamiliar and unwelcome feeling of indifference or lassitude. It is hard for me to comprehend how/why this has happened but it “affects up to 40 percent of people with Parkinson’s disease (PD) and is likely due, at least in part, to lack of the neurotransmitter (brain chemical) dopamine” (Michael J. Fox Foundation). Although I know this, I still struggle with my own self-imposed judgment of ‘just being lazy.’
Apathy is a very real problem, (Parkinson Canada – Apathy). It can worsen over time and lead to social withdrawal, depression, and anxiety. I have to prioritize my approach to dealing with it, as I’m noticing my levels of initiative vary greatly from one day to the next.
I have to get control over apathy so that it doesn’t control me.
Exercise is the best treatment for apathy and it is non-negotiable for me. This is a list item that has to be completed at least twice daily (preferably outside and with a high-intensity) or I will suffer the additional consequences of increased stiffness, rigidity, and pain.
Anything that I accomplish after that is now considered bonus! A load of laundry, cleaning a room, paying bills, and other less desirable activities are much harder to accomplish. But when I wake up in the morning, I try to pick at least one or two of those things to ‘get done today.’ Sometimes it happens, other times the tasks seem insurmountable.
Starting today, right now, I will go back to making lists…shorter lists…but lists!
“In the heat of battle, heroes emerge, sometimes from the most unlikely of sources.” – Brian Herbert
I am the only person that I know who has Parkinson’s Disease. I do not share this with a relative, a friend, or even an acquaintance. There is nobody in my circle that can truly comprehend what this is like to live with or where this is going to go.
One of the very first things that I did following diagnosis was google Michael J. Fox. I read his books; Lucky Man, Always Looking Up, A Funny Thing Happened on the Way to the Future. His writing is honest, funny, and relatable. I can’t imagine what the PD world looked like before he brought it to the forefront. He has since emerged as a heroic person in my life, one who I follow and admire. But he’s a pretty busy guy so this relationship is understandably a one-way thing of course!
Then, I discovered that facebook and twitter had Parkinson’s groups. Forums for people like me to engage in discussions about the ridiculous, and seemingly endless, number of issues involved with PD. Now I have connections, all over the world, that can answer questions, suggest solutions, share their struggles, challenges, and accomplishments, and offer knowledgable and empathetic support.
I follow their personal blogs – just like this one – and learn about their journeys. I read their posts and offer support where I can. I hear about their good days, and their not so good days. And they do the same for me. These connections have made my PD world smaller and more intimate.
In fact, my heroes have come to be PWP (people with Parkinson’s) that I’ve gotten to know through social media. They are people who build awareness of PD through their willingness to share the good, the bad, and the ugly. They are the super cool neurologists and researchers that are forging a path to creating a better life with PD and eventually a life without PD at all. I cannot even begin to tell you the excitement that I feel when I get ‘followed’, ‘friended’, or ‘liked’ by a neurologist, or an author of a book that I have read, or one of the many ‘famous’ PWP that I have come to know. These people have become like rockstars in my world!
Yesterday I watched live as Jimmy Choi attempted to break another Guinness World Record while raising funds for Team Fox. Last week I finished reading Ending Parkinson’s Disease by Dr. Ray Dorsey, Dr. Todd Sherer, Dr. Michael Okun, and Dr. Bastiaan Bloem. This morning I joined in on some conversations on SLTPD (Start Living Today PD) on Facebook. This afternoon I will try to listen in on @djclaire, from Twitter, on @radioparkies in the UK (but the time difference is a killer).
And tomorrow I look forward, with tremendous anticipation, to receiving my copy of Michael J. Fox’s newest book; No Time Like the Future.
Pondering PD 