So far this year my dedication to physio and regular daily exercise as part of my return to fitness has surpassed even my own expectations. Usually I plan more and don’t do it all (with zero guilt). But this year I’ve done a lot. In the 223 for 2023 group I was at 326 episodes of intentional physical movement last week. I met the 223 goal sometime this summer. There’s a story behind that–knee surgery, knee physio, and serious commitment to rehab and rebuilding fitness–but it all came to a grinding halt last week with the dreaded lurgy. (Shoutout to my father who taught me that wonderful expression, a favourite of his.)
So yes readers, I got sick! Weirdly it’s been years since I’ve been sick. Two knee replacement surgeries and one round of mild COVID-19 in the early omicron days have been it for a few years. I don’t like this getting sick thing. I was fevered, pukey, headachey, sore throaty and cough flavoured sick. The doctor asked which symptoms I had. I said all of them. She laughed. I haven’t tested positive for covid and I’ve been testing each day for 6 days as I write this on the weekend. I know, but that doesn’t mean it isn’t covid. I just know it’s some kind of not-very-nice virus. I went quickly from ‘maybe I should work from home today’ early in the week to “huh, I guess I won’t be working from anywhere.” I hit the bed and stayed there for days.
I wasn’t well enough to even watch fluffy television. I just slept. I didn’t eat–aside from the odd slice of toast and cup of tea–and I drank water if someone reminded me.
When I finally left the house to go to the doctor Friday it felt like a major athletic achievement. I was stiff and sore for not moving for days–especially my knees. I was light headed and woozy walking around.
And it wasn’t even time off work for three of the days. Instead, it was the worst option–CANCELLED VACATION.
Sarah, Cheddar, and I were supposed to be staying in a dog friendly OTENTik in Point Pelee National Park.
Like this:
Otentik
After that I missed attending the Ontario Universities Fair with my team from the College of Arts at Guelph on Saturday. I gave away Saturday night tickets to see Wild Woman at Soul Pepper. Hope it was good Susan!
Finally, I got out for a short dog walk. It was just 1.5 km but you bet I counted it as a workout. I might even have napped after!
Sam emerges and goes for a walk with Sarah and 3 dogs
I’ll get back to it next week, slowly.
You too Catherine, take it easy friend. Why yes, I’m the second sick blogger this week.
In the meantime, thanks to all the people at work who stepped in and thanks to Sarah and mum at home who’ve kept an eye on me.
Two months after an emergency visit to the hospital for 3 days (which I wrote about here), I’ve finally been diagnosed. I have Addison’s Disease. So, not enough for me to have a name for what ails me. It has to declare itself a disease. That causes a lot of dis-ease for me. There’s a strand of thinking that says we are empowered once we are diagnosed. Along the lines: Knowledge is power. Now you know what you’re dealing with. And that classic marketing tag line: If it can’t be measured, it can’t be managed. With a diagnosis, I’m in measurable territory. There’s a map. I can manage.
I should be relieved.
Instead, I feel defeated. I’m not yet able to accept that the price of staying alive is medication for the rest of my life. Before, when my condition was nameless, I could imagine it being easily solved by the integrative medicine protocol that I undertook with great optimism. In fact, the calculated risk I took in going off of the prescribed conventional medications did not, at least in the short term, work out. I had imagined myself proudly declaring to my medical doctors that I’d been off the medication and wasn’t my healing capacity amazing. Instead, I ended up with blood work results that clearly indicated my body spiraling toward another emergency visit. I could feel the deterioration happening. The exhaustion coming back. Instead of my smug satisfaction with the medical doctors, I was contrite, owning up to my infidelity to their recommendations. As the endocrinologist said, I can’t impress on you enough how important it is that you take these medications seriously, if you want to stay alive.
I do. Want to stay alive.
Most days.
My energy rebounded quickly after getting back to the recommended protocol. And, I feel ridiculously fragile. Death accompanies me everywhere. Sure, I know in that mindfulness way that, I could die at any moment. Now this consciousness is not about mindfulness, it’s the knowledge that if I stop putting these little pills in my body three times a day, then my heart will quit. Some days, I hold the pill in my hand and toy with the idea of not taking it, of letting nature take its course.
I wonder if my vitality even counts anymore. My energy is so much a part of my identity. If it’s not real, am I a fake? Who am I?
I understand that the fact that I have not been on medication before now is a massive privilege. I was not nearly as aware of that privilege as I am now. I understand that what I write here risks triggering people already on medication. You have every right to think, Get over yourself.
I had distanced myself from the possibility of disease. That won’t happen to me, I thought. I took credit for my health; thought I deserved it. After all, I exercise, eat veggies, sleep, meditate … you know, all the things we’re supposed to do. Right? Then my adrenal system stopped functioning. For no discernible reason. Except … these last 18 months have been stressful—my 28-year marriage dissolved; I lost my financial security, my home, my mother, my cat; and now, the cherry on top, this business with my health. I’ve written about the mountain of grief here and the psychological toll of my financial insecurity here. I haven’t even gotten to the perilous state of the world.
A loud inner critic attacks me: You failed to manage your stress. This disease is all your fault. More. You deserve this disease, because you have not had adequate empathy for others’ illness, because you were so cossetted in your healthy person privilege. You have brought this on yourself with your hubris, with every time you’ve answered a health questionnaire with the word robust to describe your health. The critic could go on at much greater length, but you get the picture.
A friend of mine, who was trying to be helpful, recently told me that I just needed to shift the narrative in my head. She tried to reassure me by saying that everything happens for a good reason, that there’s always a silver lining and that I need only put a different spin on the events unfolding. My inner critic was delighted to be so affirmed. See, she said, your fault. Oof. I get that my friend and my inner critic have good intentions. They fear that I’ve lost my belief in myself and they want me to pull up my socks. I want to pull up my socks. There’s nothing more annoying than a falling down sock that pesters the foot. Yet, sometimes I just want a caring human to sit down beside me while I take off my shoe and look at my sock and bemoan it’s falling down-ness, as if I were a character in a play written by Samuel Beckett.
At the same time, I actually do want to put one foot in front of the other and I know that will be easier with functional socks. So, even as I still crave the accompaniment and patience of another human, I’ve come up with a sock-friendly narrative I am working on adopting. New narratives don’t happen in a minute.
Here it is: Everything that’s happened in my life, just happened. Not for a good reason. Not with a silver lining. I am grateful to Thomas Moore, the author of Dark Nights of the Soul, for his clear-eyed book, in which he spoke with many people who had been through serious ordeals. Although they had all learned from their challenges, they did not say they wouldn’t have it any other way, or that they were grateful to their ordeal for having awoken them from their slumber. Instead, they said, in more eloquent words than the ones that follow, what happened sucked, I wouldn’t wish it on anyone, and, despite the bad hand I was dealt, I made the decision to grow from the experience and not to fold beneath its weight. The book gave me permission to feel all my grief and rage. Life will serve lemons. We have the right to gnash our teeth and wail or not get out of bed or whatever we need to do to honor and embody the ordeal. What doesn’t serve us is to resist the dark feelings that come with the dark nights. And, the and is key, we then have a choice about how we want to alchemize the lemons we’ve been served. We can bypass and add lots of sugar, hoping to hide the bitter. Or we can make bracing fresh lemonade that cleanses our system.
What is, is. I can either fight against what is, or I can work with it. Some years ago, I had the word compassion tattooed on my arm. It was supposed to remind me to have compassion for others and, crucially, for myself. This ordeal has brought me face to face with the compassion gap caused by the unconscious bias of my previous privilege. My inner critic screams into the gap, provoking an echo response from the canyon walls inside my head. The lemonade opportunity in all this is compassion. So simple. And so not. A super tall, skyscraper of an order.
I have the beginning of a to-do list for this new narrative: I need to begin with a hand outstretched to my critic. After all, compassion, like most things, starts at home. She is working hard to keep me upright and aware. I want, too, to create more ritual around taking my pills, to honor the fact that every time I take one, it’s a conscious choice to live. My friend Lori, who is a Reiki Master, suggested that I infuse my pills with the energy of Reiki and bring to them the intention of receiving their grace into my body as pure light and healing. I had a sudden flash of, Oh, that’s what my levels 1 & 2 Reiki certifications are for. More compassion put into practice.
The last thing that I’ve come up with so far, is to be compassionate with the critic and with all the other voices in my head who are having a hard time: The anxious part of myself, who trembles faced with all the unknowns in my life right now. The grieving part. The demotivated part. All of them.
Just as I long for someone to sit beside me and my falling down sock, I will sit beside my critic and my anxiety and my grief. After all, they are friends who need my support. Earlier in this piece, I wondered who I am and whether my diagnosis changed the answer. I’ve found my way here to several answers. First, I am the same person, with many different, sometimes conflicting and hopefully evolving characteristics. Another answer is aspirational, I want to be a person who sits beside others. And I’ll start with myself.
In this #TBT post, I look back to what was happening with FIFI in 2013, the year the blog started.
In her March 23, 2013 post, Back after it after almost a month away: Rebuilding after illness, @samanthabrennan describes what happened when she got “a very nasty virus” that stopped her from exercising for nearly a month. She reports experiencing many bad symptoms: the worst was a “wracking cough” that kept her up all night. It’s tough on the body to be sick for so long, and it can negatively affect one’s spirits as well.
Ten years ago, Sam gave herself some motivational advice to help her get back to her activities: Aikido, soccer, CrossFit, rowing, riding, running, and swimming. Here’s a summary of the Sam-to-Sam pep talk:
Misery loves company (my expression, not hers): Sam notes that she will be no less further along than everyone else who has struggled to keep up exercising over the long, cold winter in Canada.
Baby Steps: Sam tells herself to take small steps and work out with others who may be in a similar situation.
Acceptance: Sam suggests checking her ego to help her to accept any nervousness she may be feeling.
Enjoyment: Sam has missed out, and she knows it will be good to return what makes her happy.
Focus on the good: Sam says that nutrition and on eating intuitively can be a productive focus as she rebuilds her strength.
At the time that Sam was recovering from her illness, she could not have predicted that, ten years later, millions of people around the world would have to rebuild their strength and their spirits after facing COVID-19 and other related viral illnesses.
This includes me. I’ve been sick with more than one viral infection for nearly three weeks, and although I’m recovering it’s had me feeling down.
So, I decided to apply Sam’s ten year-old advice pre-COVID advice to my current situation.
Same boat: I’ve heard of lots of folks who have been out sick for a long time these days. Although I feel like this illness will go on forever, others have struggled too and come out the other side. So will I.
Treadmill baby steps: I can capitalize on feeling better than I did last week by doing daily stretching, yoga, and some short treadmill walks before I re-join the world. (Also, I should really clean my home.)
Accept…and appreciate: Even when I’m healthy it’s hard to accept my skill levels, but there’s nothing like getting sick to help appreciate what it’s like doing stuff while illness-free.
My teams: I’ve played two team sports this winter, curling and soccer. I’ve missed seeing my teammates in both leagues, and the season is not yet over, so hopefully soon I will re-join them.
Tasting things: Like Sam, I haven’t been eating well while sick. Trying to get back to regular meals and healthier snacks will be good. Being able to taste things again will be even better.
Overall, I find Sam’s advice (to herself) reassuring for getting over an illness. Looking back has helped me to think more positively about moving forward!
After spending the better part of two weeks dealing with Covid, I am finally feeling mostly like myself.
I missed two weeks of Taekwondo, missed lots of walks with Khalee (I didn’t miss two full weeks of walks, those are easier to scale to my current energy levels) and kept my yoga mat rolled in the corner.
I really missed my usual activities. Aside from my enjoyment of the movements themselves, I missed the shape that yoga and walks give my days and the shape that TKD give my weeks. Without those things, my last two weeks have had a ‘stepped out of the normal flow of time’ kind of feeling.
(Yes, I know wobbly is misspelled) A GIF from the BBC show Doctor Who in which two character are saying ‘Wibbley-wobblye timey-wimey’ to each other.
This time last week, I had to sit down after putting in a load of laundry (there are two flights of stairs involved) and trying to do even gentle yoga left me feeling not quite dizzy but definitely disoriented.
And aside from the physiological evidence that I needed to take it easy, I also have read (and heard evidence from friends) that pushing yourself too hard when you are recovering from Covid can lead to complications.
Today though (I am writing this on Monday), I did a little gentle yoga and my walk with Khalee, while somewhat short, didn’t leave me feeling worn.
In fact, the movement in both cases felt GOOD instead of being mostly tiring.
I’m taking that as a good sign that my recovery is on track and that I am easing back to my regular life.
I’m still going to rest when I can and pay close attention in case things get to be too much for me but I’m glad to be stepping back into *my* normal flow of time.
A GIF of a person with white hair and glasses, wearing a dark pink sweater and a flowered scarf saying the word normal while making air quotes with their fingers.
I’ve spent the day feeling under the weather (and appropriately it has been very VERY rainy) and trying to sort my to do list into:
– things that I feel up to doing today
-things that must be done today (by me or by someone else)
-things that can most definitely wait
-other stuff
Resting, very low-key yoga, and an online meeting made the cut…a lot of other things did not.
I can’t, however, tell you how I decided which was which. (It’s not a secret, I just have no idea!)
How do you decide how much rest you need when you don’t feel well?
How do you decide what stays on your to do list and what you can let slide?
PS – Here’s a useful reminder I drew a few years ago. You don’t even need to feel sick to take it to heart.
Image description: a small square card on a patio railing. The card has been painted yellow and has dark blue lines extending outward from the centre to create the impression of a top-down view of a flower. Blue text on the drawing reads “you don’t have to be and do all of the things. Choose the ones that feel right, the ones you know are yours. (That’s enough)”
It’s Saturday morning in late September. I’m sitting in one of my favourite coffee shops enjoying a latte and trying to get the chill out of my bones. I decided to bike here this morning, despite the thermometer reading eight degrees. I love Ottawa in the fall: it’s one of my favourite times of year. The leaves are turning on the trees, but the Parkway is still reserved for cyclists on the weekends, which makes for some breathtaking rides. The Parkway hugs the Ottawa River, so it’s not unusual to run into hordes of Canada geese as you bike down the west-bound lanes. When the cars are away, everybody gets bolder, including the wildlife.
I’ve been a cyclist most of my life and in my twenties it was my main form of transport. A friend once described cycling as the closest humans every get to actual flight, and I agree. But I had an accident on my bike about a decade ago that left me fearful of climbing back on. While I still cycled every so often, I lost the joy I had had before my accident.
Then about six years ago I took the leap and bought a new bike: a bright red electric bike modeled after the wide-handled cruisers of the fifties that appealed to both my love of two wheels and my personal aesthetic. To my deep pleasure I rediscovered the joy of pedalling along the many bike paths this city offers. I could ride to work almost exclusively on paths. The five-kilometre trip was a pleasure every time and I resisted getting back on the bus until early December.
But last year in the late fall, I had a stroke. Hospitalized for the first time in my life, I spent two weeks answering every person who asked me, “What is your goal for recovery?” that what I wanted most of all was to get back on my bike. I didn’t know that this was a very unlikely and lofty goal. When you’ve had a stroke, people treat you like you’re not entirely compos mentis (which of course you’re not) and they don’t try to nay-say you. If I wanted to get back on my bike, nobody was going to tell me it was very unlikely.
But the first week I was back home, I climbed up on my stationary bike, which I had bought just before the pandemic hit in order to keep my biking muscles in good shape over the winter. I lasted five minutes. It wasn’t just the challenge of biking – even the act of getting on and off my bike was hard. I wobbled. I tripped. I cried a little. And I persisted. By January, I was on my stationary bike three times a week for 20 minutes. By March, that was four to five times a week for 30 minutes.
Then, at the suggestion of my massage therapist, I started upping the difficulty by twisting my upper body as I pedalled. Then I added hand weights. Then I closed my eyes, which forced me to try to balance more carefully.
In April, Big Red, my beautiful bike, came up from storage in the basement. In early May, I attempted my first ride on a real bike. It was a mere six kilometres over 30 minutes, but I wept with relief at the end of it. I had not fallen. I had not had to stop.
My balance was still shaky: getting on and off Big Red was not easy for me. If it had not been for the throttle that permitted me to get started without pedalling and let me catch my balance as I took off, I do not think this would have been possible.
Hanging out in a hidden spot on the Ottawa River with Big Red
Since that first ride, I have probably done 600 kilometres this summer. Weekends are my big ride, when the Parkway is open and I can pedal almost all the way to my coffee joint on a wide lane meant for cars, but I am on the bike paths several times each week. My Saturday rides are over 20 km.
I am stronger, better balanced and more confident on my bike. I have even survived a fall with relatively minor damage. But if it hadn’t been for the help having an e-bike gave me in the early days, I am not sure I would be back biking. Doctors and nurses have met the information that yes, I did get back on my bike with polite incredulity. And being back has helped me heal not only physically but mentally from the feeling of total incapacity I experienced last fall. I’m still here. I’m still pedalling.
I’m so grateful.
DJ Brown is a performer turned government wonk living and thriving in Ottawa.
Parkinson’s Canada hosted “Pedal for Parkinson’s Prince Edward County” this past Saturday, a charity bike ride features a 40-km and 75-km option, starting and finishing at the North Marysburgh Town Hall.
Our team was called Susan’s Spinners– Sarah, Sarah’s Zwift ZSUN teammate Emily, and me. In the photo above we’re joined by Susan, a family member and occasional blogger at Fit is a Feminist Issue, who is also a cyclist and who has Parkinson’s.
Here’s a few words from the participants:
Susan
This year attending the Pedalling for Parkinson’s event in PEC was somewht bittersweet. I haven’t been on my bike for the past month due to a recent back injury, so didn’t want to chance riding.
I also missed my original team, the Rigid Riders (people with PD and their friends) as most were attending events supporting team captains Mike and Steve as they ride across Canada raising awareness and funds for Parkinson’s (https://spinningwheelstour.ca/)
What made it a wonderful day though was that two members of my extended family, Samantha and Sarah, and Emily, a friend of theirs who I didn’t know, came together on short notice to form a team, Spinning for Susan, to bike and raise funds to support me and Parkinson Canada.
Recently I’ve thought the most important message a person with PD can hear is that they are not alone. I not only felt that profoundly but am happy that my team raised funds for Parkinson Canada to spread that message and to continue to support people with PD across the country.
Sam
It felt odd to be doing another charity bike ride so soon after the Friends for Life Bike Rally, but this is an important cause for our family. Susan and I have known each as friends since Grade 9 home economics and we’ve been family since I married her brother many years ago. I joke that Susan and I were friends first, back when he was the annoying older brother.
So Susan’s Parkinson’s diagnosis has hit the whole family. She’s been riding with a Parkinson’s group and in past years has ridden this charity ride. When it turned out that we could have the use of Sarah’s family farm in Prince Edward County that weekend, it all started to come together. Sarah and I would ride and Susan would come along for support and inspiration. She’s also a very generous donor to Parkinson’s research, giving enough so that Sarah and I both got jerseys! When Sarah’s teammate Emily, who lives in the county, agreed to come along, we had a happy trio of riders. I’m struggling a bit with speed these days so I was happy to have a chatty, scenic social ride for a very excellent and important cause.
Emily
I didn’t even know the event was taking place until 48 hours ahead of time when Sarah invited me to join in. Since I’m training for a 150km ride in September, and live in the neighbourhood, it sounded like a great opportunity to find some company for a long ride.
As I signed up online felt a pang of guilt, however. They were asking for a minimum fundraising commitment of $250. The ride was in just over 24 hours… “Nothing to lose,’ I thought, and made my own donation to get the ball rolling. Four of my friends and relatives jumped at the chance to donate. In less than 24 hours I was above the threshold. Guilt assuaged.
So happy that I went. I not only managed to raise a little for a really good cause, I got to meet the wonderful Susan, for whom we rode, and had a lovely social ride as a bonus. I will definitely be back next year!
Sarah
Like Sam I found it seemed strange to be doing another fundraising cycling event so soon after the Bike Rally, but I knew I really wanted to ride in support of my family who are living with Parkinson’s Disease, including Susan and my uncle Jack. I also had two grandparents with PD, so I’ve been able to see the results of all of the groundbreaking research, much of it being done here in Canada, that’s making a big difference in the everyday lives of over 100,000 Canadians with PD. In a generation there have not only been huge leaps in treatment but also understanding this progressive neurological disease, and the important role exercise plays in mediating symptoms. It was amazing to ride with folks who told us how movement, especially on a bike, is medicine for them.
The ride itself was super well organized and had lots of support from the Prince Edward County community, from the local radio station to the Lions cooking us lunch. I will never cease to be amazed at the number of cycling-friendly roads all over the County, even if some of them are a little rough.
All in all, a great day on the bike for a great cause!
Sarah and Sam listening to the pre ride instructions
Join us next year! It would be great to have a larger team and make it a social weekend in Prince Edward County.
For the past four weeks, someone I love has been in a hospital intensive care unit with an unexpected and grave medical crisis. Immediately, friends and family mobilized, and many of us tried to keep ourselves busy with tasks ranging from dog walking to email updates for work colleagues. COVID regulations plus ICU rules severely limit visitors, so hanging out at the hospital, walking the corridors and trading off bedside shifts is not an option. As a result, there hasn’t been much to do except wait, worry and try to maintain our regular life routines.
Yeah, like that’s going to happen.
I know, I know: the advice we’re all given when a loved one is very ill or dying is to try to make a little space for self-care: eat food that feels good (and doesn’t come out of a vending machine if you can help it); get some rest as you can; and do some kind of physical activity, preferably outside.
The internet has all kinds of articles telling us that movement is helpful for grief, sadness, depression, pretty much whatever ails you. This article seems to suggest “sweating out the sadness”. However, others are more balanced and modest in their advice for those dealing with stress, sadness and grief. In this article, we hear from an expert who, given my current experience, really gets it:
“This is not a time to be judging oneself and it’s important to listen within. People become more fatigued and can become more accident-prone during grief. Both of these can affect exercise and this is not a time to ‘push through it.'”
“Sometimes all one can do is walk to the mailbox and back”…
Thank you, internet article expert. Because I have not been moving much at all the past four weeks. I’m teaching my classes and dealing with the absolute necessities, but as soon as I get home, I flop on the couch and talk on the phone to give or receive medical updates (yes, I’m one of those throwbacks who uses phones for real-time two-way audio). Or, I watch episodes of Top Chef or Blown Away or other craft or cooking reality shows. For food, I’m scrounging in my kitchen or ordering takeout.
But movement? My yoga mat is sitting on my living room floor, mostly unoccupied (I’ve managed a few sessions, but nothing like I want or need). My bike trainer is not set up. And the outside remains too far away for me to venture out. I’m just too sad, too flattened, too depleted to move.
So I’m not moving a lot these days. I am, however, moving a little. Sometimes I’ll hear a song on the radio in my kitchen (again, throwback moment– I have a radio that plays songs real-time over the airwaves; but I don’t churn my own butter, in case you’re wondering). That might get me into a rhythm, even inspire a few dance moves. I’m parking in the lot not closest to my office at work so I get a few more steps in. I’ll stretch before bed and after my morning coffee.
And then there’s meditation. Meditation is saving my bacon right now. I’m meditating several times a day right now, mainly because I have to in order to 1) get out of bed; 2) get through the transitions of my day; and 3) get to sleep. You don’t have to move to meditate. In fact, it’s recommended to stay relatively still. Yes, I can do that.
One thing meditation teaches is that, when you’re paying attention, things change. All the time, they’re changing. I don’t know the outcome of this crisis for my loved one. But I do know that things will change. I’ll move more again. Just not right now.
Readers, if you feel like sharing any thoughts or experiences you have with grief and physical activity, I’d be honored to read them.
There are lots of things I could write about today. I’ve spent a fair bit of time pondering my choice of topics.
I was going to write about my annual thyroid cancer check up. It’s today. And if all goes well it’s my last annual check up. (Fingers crossed.) After today they’re every five years. My birthday last week was also mammogram day. It’s as if September weren’t a busy enough month for an academic. It’s also cancer screening season for me.
I thought about writing whether Tracy and I want to write a turning 60 book, to follow up our turning 50 project, Fit at Midlife: A Feminist Fitness Journey. We’re having dinner together tonight and no doubt the subject will come up
Let’s see. It’s also blog birthday season. As Tracy posted, happy 9th birthday blog! We’re nearly at 5000 posts too. That’s hard to believe. This post is 4990!
And the blog’s birthday and my birthday, not surprisingly given how the blog got started, are pretty close together. Another possible topic, what does 57 mean anyway?
Here’s a photo from my birthday bike ride!
Jeff, Dhurin, me, Kim, Ellen and Sarah on the birthday bike ride
At this time of year I often write about back to school and trying to stay physically active as work gets busier and busier. This year, unlike last, I’m back in my office. I’m not yet back at the gym.
I’m having big busy days filled with work and people. So many people! I gave a lecture to O-Week students (photo on the right) and hung out with incoming College of Arts students at our Food Truck lunch meet and greet (photo on the left.)
I also biked around meeting parents and students on move-in day. (Round photo at the bottom.)
Sam’s pink Bromption outside Zavitz Hall at the University of Guelph
I’m back in the office now, wearing (mostly) real clothes. I looked at my clothes the other day and wondered why there were so many pairs of yoga pants. Who needs five pairs of yoga pants? Oh right, work from home and the pandemic. I could write about wearing clothes again. I’m working my way back to real shoes but I am not there yet.
In recent years I’ve been suffering a bit from seasonal sadness and trying to tell myself new stories about fall and winter, leaning into the time of cold and dark. I’ve been trying to extend outdoor activities into the fall. We’re going canoe camping again one more time this fall. And we are also looking at more fall gravel riding plans. So there’s that.
I’m a bit nervous that the no travel thing is continuing and it looks like this will be another year in which I don’t get to go somewhere warm with my bike for the winter. I miss the southern US! I miss Florida and Arizona for winter cycling.
In the end, I just want to let you know how much we’ve been enjoying our time in Prince Edward County and likely will continue that into the autumn too.
How’s your September starting out as we move into the fall?
I joined the military reserves when I was 18 to play the French horn in the Changing of the Guard band on Parliament Hill in Ottawa. In 2011, I flew to Maputo, Mozambique by myself to join strangers on a Habitat for Humanity build. I’ve even hiked to Annapurna base camp and para-glided off a mountainside in Pokhara, Nepal.
But my biggest challenge, and maybe my greatest accomplishment, is facing Parkinson’s disease head-on. I hope I do so with courage, fortitude, and occasionally even a little humour.
I was diagnosed with Gaucher’s disease, a rare metabolic disorder, about six months before my PD diagnosis. At the time, I was told this meant I was at high risk of developing Parkinson’s disease. When I subsequently developed a tremor in my right leg, I was not really surprised when PD was confirmed. In fact, immediately after the diagnosis, I texted my family, had a very brief period of feeling sorry for myself, and headed back to work from the hospital. I subsequently learned how lucky I was to be so quickly diagnosed, as many people suffer for years before diagnosis.
In terms of how PD affects me, the most obvious symptom I have is tremors affecting my right side, which are made worse by stress. For me, the weirdest thing about Parkinson’s is that your body doesn’t do what it used to do automatically, so I have to try to tell it to do things. I have trouble with manual dexterity, things like typing, buttoning buttons and cutting bread. I also have to be careful walking so I don’t trip and fall. Lately, it’s been difficult to roll over in bed.
I am fairly lucky though that so far, my Parkinson’s disease is quite manageable. And my friends, family and colleagues have been incredibly supportive, especially over the past several months.
I was honoured earlier this year to be able to participate in a world-first clinical study which used an MRI-guided ultrasound to open the blood-brain barrier (BBB) on the left side of my brain. While my BBB was open, I was infused with a drug commonly used to treat Gaucher’s disease. The purpose of the phase one study was to determine whether this could be done safely. There were only four participants, and I was patient four.
Susan taking part in the clinical trial
Although there was no promise of any benefit to me, I was pleasantly surprised to notice a fairly significant difference in my symptoms. The most obvious change was that I regained a sense of smell. Many people don’t know that some Parkinson’s disease patients start to lose their sense of smell long before they are diagnosed. That had happened to me. I can’t say that regaining smell is all positive given that the first thing I smelled was my cat’s litter box
Seriously though I have noticed positive changes: less tremors, less rigidity of my leg, and better manual dexterity. As the study has been a success so far, they are looking at the possibility of a phase two trial. If it goes ahead, it will include a larger group of people with the focus on effectiveness of the procedure. I am very hopeful that this could lead to significant benefits in the prevention and/or treatment of Parkinson’s disease.
In closing, I want to mention Parkinson Canada as I really appreciate the work they do through their support groups, research and advocacy. I belong to two support groups including a “young onset” women’s group (“the Parkie girls”), and occasionally attend a Sunday afternoon drop-in discussion group, all of which are sponsored by Parkinson Canada.
I’m also part of a bike group called the Rigid Riders, whose focus is to encourage Parkinson’s disease patients to cycle. The Rigid Riders take part in an annual charity event, Pedaling for Parkinson’s, where 100 per cent of the funds raised goes to Parkinson Canada research.
Most recently, Parkinson Canada created an advisory group to their board made up of people with Parkinson’s disease. To me, this clearly reinforces their commitment to hearing patients’ voices and making their very best efforts to provide the support that we need.
That’s why I am excited that Parkinson Canada is part of the Federated Health campaign.
Susan is a ‘Parkie girl’ who works as a lawyer. She tries to regularly practice random acts of kindness and is looking forward to days of hugs and travel.
