There's no greater opportunity to write my second blog post than for Parkinson's Awareness Month. Especially after I was met with such great response to my first post!
I have been pondering for a few weeks now, how this was going to go... I have been reading books ( "Ending Parkinson’s Disease: A Prescription for Action" by Ray Dorsey, MD, Todd Sherer, PhD, Michael S. Okun, MD, and Bastiaan R. Bloem, MD, PhD; Michael J. Fox's "No Time Like The Future"; Tim Hague’s “Perseverance”), reading articles
(Viewpoints Magazine Spring 2021 by Parkinson’s Society of B.C.) and listening to podcasts
(my longtime favourite, “When Life Gives you Parkinson’s“) and even spoke to Jean Blake, CEO of Parkinson’s B.C.
All of this was in an effort to try and steer me into a clearer direction for this week's Parkinson's Awareness post. What I learned was this: they were all interesting, informative, entertaining, emotional, and more. However, I was going to have to think of something on my own. I really liked the idea of writing “letters to our younger selves," but I feel like this is still so new to me. I haven't had PD long enough to write to my "younger self," so as a kind of a spin off idea, I’m writing about this - what has Parkinson’s given me, and what has it taken away? I am focusing on the facts, not necessarily the negatives or positives.
I’ll start with what PD has given me. This is by no means a “wrap” on giving and taking, but rather a never ending list of progressions. Much like PD itself, which causes a never ending series of changes in me. These changes grow day by day, sometimes hour by hour, and person to person. Because of this, PD has given me the ability to truly be present in the moment. Sometimes I have days where there are so few “on” times. There are times in the day that I am not even able to function mentally or physically at a level where I can do basic stuff. Stuff like flossing my teeth, wearing something with buttons, eating food without nausea, or brushing my hair! Not kidding! Last week I went three days wearing the same ponytail after I washed my hair. When I took it out, I looked like an 80’s glam rocker! So it's no surprise that sometimes I'm not even ”with it” enough to drive the car over to my sister's house, even at a 40km/hr speed limit!
It has given me the ability to give a shit, or to not give a shit about stuff. Having always been a people pleaser, I’m happy to say, I could not give a shit about that. Don’t get me wrong, I definitely care about people being pleased, but it’s not up to me! And equally important, PD has given me a community to take part in. This is not necessarily a community I wanted to be part of, but part of it, I am. I have met people who have inspired me, scared me, (sometimes both) and welcomed me. I have made lifelong friends, heard from many old friends and acquaintances, and strengthened my existing relationships - all thanks to the PD community. And last but not least on my "given me" list, is advocacy. I guess this goes hand in hand with my community. My friends in Parkinson’s, Larry and Rebecca Gifford, have introduced me to Parkinson’s advocacy through: their podcast, “When Life Gives You Parkinson’s,” the PD Avengers (an advocacy group started by Larry and others who are committed to ending Parkinson’s disease), The Michael J Fox foundation, Parkinson’s Canada, Parkinson’s society of B.C., and the World Parkinson’s Congress in Barcelona 2022! I will include the websites at the end. Although it can be a bit overwhelming at times, it gives me great purpose to be part of these groups in whatever way I can.
Which brings me to what PD has taken away... First of all, and I try not to feel too mad, or negative about this, my independence. This one is a biggy for me! I’m talking about physical independence. The ability to be alone and not feel anxious. The freedom of jumping in my car and hitting the road without looking at the clock to see when I take my next set of meds. Getting stuck driving in traffic or on the highway during an “off time,” can be a white knuckled experience for me and whoever happens to be with me! And my smile. This is also a big one for me. My smile has always been my trademark. My big pearly whites and happy face is now changing, thanks to the “masking” of Parkinson’s. My sense of smell is mostly gone, sometimes it is there, slightly, and with this, taste is also altered. Bummer.
There are new experiences every day when you have Parkinson’s, often they are new to each individual. This is why there are no two cases alike. For me, I try to take each day as it comes. Some days are better than others, and the good ones usually involve a run, or some fresh air, which makes me forget about me, just for a while.
Until next time,
Jeanette
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