Category: Awareness

Awareness?

On By ponderingpdIn AwarenessLeave a comment

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

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

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

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

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

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

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

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

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

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

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

 

Heroes

On By ponderingpdIn Awareness, Living with Parkinson's, Social

“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.

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Days Like These

On By ponderingpdIn Awareness, Exercise, Living with Parkinson's, PD ProgressionLeave a comment

“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!)

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Sandals, Swimming & Sunshine

On By ponderingpdIn Awareness, Exercise, Living with Parkinson's, PD ProgressionLeave a comment

“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

 

Sunrise on the East Coast Dingwall, Nova Scotia

 

 

 

 


Sunset of the West Coast Vancouver, British ColumbiaSunset of the West Coast Vancouver, British Columbia

 

Sunset of the West Coast Vancouver, British Columbia

Exercise is Medicine

On By ponderingpdIn Awareness, ExerciseLeave a comment

“The doctor of the future will give no medicine, but will interest his patient in the care of the human frame, in diet and in the cause and prevention of disease.” – Thomas Edison

In the three years that have passed since my diagnosis, the most important thing that I have learned and the most critical component of my treatment is exercise. I feel so much better when I move and it seems that the faster I move, the better I feel. Seems easy enough right? Not always.

Parkinson’s brings some things to the table that can impact my desire and ability to exercise.

Apathy: (I loathe that word) There are days when my brain is not up to doing anything. A certain level of fatigue sets in and it is incredibly hard to push through it. Usually, I can gain control over it and get out the door, or on the bike. Other days, it just doesn’t happen. I’ve come to accept these days as ‘needed’ and try not to beat myself up over it. Non-movement symptoms: Apathy

Pain: (I loathe that feeling) There are days when my body simply tells me to stop. Pain in my left shoulder, arm, and foot can occasionally restrict movement in such ways that getting outside for a walk/run or sitting on the bike is next to impossible. Some days I can push myself, but I’m getting better at listening to what my body is telling me. Does Parkinson’s Hurt?

But 99% of the time I know that movement will heal. So I treat my ‘movement disorder’ with movement! When I move, I exert power over apathy. When I move, I reduce stiffness and rigidity which alleviates pain for a bit. Exercise as Treatment. Getting out the door and moving past pain is, by far, the most effective treatment for my symptoms.

Yesterday I ran 10km as part of a Virtual fundraiser for Camp Oochigeas (a summer camp for kids living with cancer). AND when I move faster, I feel free and flexible…like I don’t have PD! I like those moments. This might be similar to how the kids at Camp Ooch might feel when they go to camp – like they don’t have cancer.

I encourage you to visit their website Camp Ooch to see the wonderful things that they do and to donate if you can.