“I used to hurry a lot. I used to worry a lot. I used to stay out ’til the break of day” The Eagles – The Long Run
Since my diagnosis in 2017, I have read, researched, and learned so much about Parkinson’s Disease that I consider myself to be my own personal expert. PD impacts people in a variety of ways and not everyone has the same symptoms or issues. However, it is progressive in nature and will undoubtedly worsen over time. Yet even the speed of progression varies from person to person.
Every now and then, thoughts, of where I could be heading, creep into my mind. But as quick as they enter, I push them out. The only timeframe that I can control is now. I cannot change the past and I certainly cannot predict the future. Nor do I want to. I have never been inclined to flip to the last page of a book to find out what happens, and I don’t want to know how the movie ends before I watch it.
Almost a decade ago, I ran a marathon with my friend Shannon (definitely on the highlight reel of my life!). Our training included multiple short runs and one long run per week. The length of the long run would increase gradually over the weeks and months in order to build up our distance so that we were prepared to run 42.2 km on the day of the marathon. Parkinson’s Disease is a long run and I feel that keeping my focus on what I can/should do NOW, to move well and feed and protect my brain, will prepare me for whatever goes down eventually.
Worrying about the future is useless, possibly even harmful. Preparing for it is productive.
When you live with a chronic progressive condition, like Parkinson’s Disease, you need to be flexible. I just had a little giggle as I chose to use the word ‘flexible’ because in a physical sense, I would certainly not describe my body as ‘flexible!’ The stiffness and rigidity that PD has given me have left me feeling just the opposite!
But I think it is important that my mind, my attitude, and my heart should remain flexible through the course of this disease, as it is too easy to feel stuck or confined to living with the symptoms.
Accept limitations. Adapt to situations. Adjust expectations.
Accept that my left foot can no longer operate in anything but closed-toe shoes. Adapt by switching out footwear. Adjust to wearing closed-toe water sandals at the beach – ugh.
Accept that my osteoporosis leg bones won’t support the impact of running. Adapt by choosing to walk instead. Adjust to trying to achieve the “runner’s high” on my elliptical trainer!
Accept that I often choke on certain foods. Adapt by cutting food into smaller pieces and chewing longer. Adjust to not eating certain culprits!
Accept that sleep is difficult. Adapt by trying a million different things to improve it. Adjust…well that hasn’t happened yet. But I’ll keep trying to figure that one out!
With this beautiful season comes trips to the Pumpkin Patch and the Apple Orchard and yummy fall baking. Two favourite recipes I like to make at this time of year are Roasted Squash Soup and Pumpkin Spice Muffins. Both of these call for peeled apples.
While peeling an apple is something most people do mindlessly and effortlessly, for me, this is a most dreaded task.
Parkinson’s Disease is a movement disorder that can impact coordination. Some activities that require my hands to do two different things at the same time (ie. peeling an apple) are extremely frustrating to do. It is both a physical challenge and a mental challenge. My brain has to focus intently on making my fingers/hands move correctly and my whole body seems to get involved in supporting the muscles in my hands! My shoulders, neck & back are exhausted by the time I’ve finished the job.
Isn’t that ridiculous?
If it’s not a ‘good’ day, I’ll sometimes ask for help. But I think this is something I need to keep doing. Use it or lose it!
But it is certainly worth it! Great soup and healthy muffins!
One of the earliest signs that something might be amiss with your dopamine levels, is the complete or partial loss of the sense of smell. This is called Hyposmia. (This is also one of the early signs of COVID-19 and quite honestly, the relationship scares me! Why covid-19 makes people lose their sense of smell)
I have written about this before in Stop and See the Roses and acknowledged that looking back, this one of my earliest symptoms.
Well, I found out just how EARLY this sign appeared!
As I was looking at old movies from over a decade ago (which was so much fun!), I came upon a moment where my son brought me a flower from the garden to smell. I attempted to smell and my reply was;
“I have a very weak sense of smell because I can’t smell that.”
The date on the film was July…2009.
I was diagnosed in May…2017.
Wow. I’m not sure if anything would be different now if I had pursued a doctor’s visit because I couldn’t smell the flowers, but researchers are now doing a lot of work around early diagnosis based upon loss of/impaired smell.
“Slow down, you move too fast” – Simon & Garfunkle
I feel better!
The last few weeks were rough, (Days Like These), but I’m feeling better. Ankle has healed, damaged rib cage is back to normal after a paddleboarding mishap. Waiting for Bone scan results.
After a long rest, healing has been able to occur!
Like the song says (see below); “Slow down, you move too fast.”
Maybe I was.
So I will slow down…a little bit…just to avoid any further injuries/setbacks.
“Nobody told me there’d be days like these. Strange days indeed.” – John Lennon
I’ve been thinking about whether or not to write this post for a couple of weeks now. You see, I’ve fallen into a pattern of writing about a PD symptom or issue, and either providing my own solution, a recommended remedy, or simply trying to put a positive spin on living with this chronic neurological degenerative disease.
Truth is though, I’ve fallen into a bit of a rough patch lately. And I’ve decided to write about it in order to let readers know my truth, my pain, and just how much I dislike having Parkinson’s. Today I will not be strong, or brave, or light, or even positive. I’ll be me.
I’ve written that Exercise is Medicine and how moving fast allows me to feel free. Well three weeks ago I injured my ankle. My right ankle. My good ankle. The ankle I rely upon to maintain good balance. There was no grand event to cause the injury, just overuse from walking/running. Tendon? Ligament? Bone? Nobody is completely sure, but rest is what I need for it to heal.
More appointments are made; Physio. Osteo. Xray. Bone Scan in a couple of weeks. Because I have Osteoporosis, we need to figure out what’s going on with my bones. This scares me silly. Are my bones becoming so weakened that walking fast/running is too risky?
I am benched. Sidelined. Totally knocked off my game.
If I don’t move, I get stiff. I get rigid. Stuck. My muscles contract constantly – even during sleep. Pain is multiplied and wide spread. Shoulder, neck, back, butt, knees, calves, feet.
I wake up each morning feeling as though I’ve gone 10 rounds and lost.
I don’t like the feeling of losing. I’m not very good at it.
Yesterday, I walked around my block (maybe 400m). It’s a start. (ok…there it is…a little hint of positivity! I can’t help it!)
“Live in the sunshine, swim in the sea, drink in the wild air.” – Ralph Waldo Emmerson
Summer has been, and always will be, my favourite season. Don’t get me wrong, I am truly blessed to live in Canada where we enjoy 4 very different seasons, but to me, there is nothing better than a day spent at the beach with family or friends. Unfortunately, Parkinson’s has changed the way I enjoy summer and I have had to once again adjust and adapt in a few ways.
Sunshine is one of my loves and no matter where I am, I can tell you where the sun rises, sets, and the optimal position to sit to take advantage of the rays. Growing up, working on a ‘tan’ was an important sidebar to my summer experience. Days were spent lounging in the backyard with my sisters, swimming in my friend Ruthie’s pool, and running wild at summer camp. Sunscreen was usually an afterthought when my shoulders were red and my nose was peeling. But I grew to crave every minute in the sun, from waking at ridiculous hours to catch the sunrise, to staying late at the beach to take in the sunset.
While there are many things that Parkinson’s has forced me to adapt to, I was very disappointed to discover there is a link between PD and skin cancer. A Surprising Relationship: Parkinson’s Disease & Melanoma. There are lots of studies and research on the subject and the bottom line is that people with PD need to have a dermatologist on their ‘team’ and take every precaution while in the sunshine by reducing exposure and using sunscreen. And so I’m getting a referral to a dermatologist and searching for a high-quality paraben-free sunscreen…but reducing time spent in the sunshine….this will be harder!
My shoe of choice has always been my flip-flops. In fact, I’ve always had a competition with myself to eliminate the use of socks from my wardrobe as early as possible in the spring or as late as possible in the fall in order to slide into sandals.
However, the dystonia in My Left Foot is preventing me from wearing sandals or flip-flops. It’s a difficult thing to describe, but my foot just doesn’t have the coordination to strike the ground properly and I do much better in a shoe. So I go barefoot where and when I can, and I have found light shoes that support my foot without the need of a sock – it’s a compromise – but I still miss the flip-flops!!
Finally, summer is a time for swimming and this is something that I’ve always enjoyed, for cooling off and helping with that summer tan!
Last summer, I was alarmed when I went for a swim at a friend’s cottage and found myself in a little bit of trouble. My left arm (tremor side) and shoulder suffers from rigidity, stiffness, restricted movement, and PAIN. Once in the water, I realized that I could not move that arm in the form of a front crawl, breaststroke, or even a dog paddle. It was alarming and I had someone toss me a pool noodle in order for me to stay afloat. So now I need to always consider wearing a PFD when I am on a boat or in deep water.
Luckily, these are PD problems that have solutions.
Sunrise on the East Coast Dingwall, Nova Scotia
Sunset of the West Coast Vancouver, British Columbia
“Getting comfortable with feeling uncomfortable” – me
When I woke up this morning, I hung my feet over the side of the bed. The toes on my left foot were curled downward. (F#@k!)
I stood up, and the pain that I’ve been feeling for a couple of months now kicked in as soon as my foot hit the floor. I walked awkwardly into the bathroom and the pain soon disappeared.
But the curling thing is new and definitely unwelcome.
This is called Dystonia.
dys·to·ni·a:noun. a sustained or repetitive muscle twisting, spasm or cramp that can occur at different times of day and in different stages of Parkinson’s disease (PD); a common early symptom of young-onset Parkinson’s disease.
For close to a year, my left foot has been odd, awkward, unusual. My gait has changed somewhat and my foot no longer strikes the ground like it should…like it used to…like my right foot does.
PD is progressive. (Strange word choice because progress is usually a positive thing, but in the case of diseases, progressive is never a good thing!) And while I am aware that my condition will worsen over time, I don’t welcome any of these progressive changes.
I read. I learn. I try to figure out how to slow another symptom down…halting progress. This is what I found; “People with PD most commonly complain of a painful dystonia of the foot on their more severely affected side. This usually occurs first thing in the morning, when dopamine levels are at their lowest as nighttime medications wear off”(parkinson.org).
At my last visit to my neurologist, we discussed my left foot. We talked about the potential need to add another pill (carbidopa/levodopa 25/100mg) before bedtime. Seems easy enough, but there are negative side effects to increasing PD meds and I have always been encouraged to stay on the lowest dose possible for as long as possible.
I somehow feel as though I will be losing if I start to take more meds…and I hate to lose!
I’m left with trying to figure out a balance between taking more meds to reduce dystonia or pushing a little further to prevent other issues from taking too much medication.
Maybe I just need to get comfortable with feeling uncomfortable for now.
Pondering PD 