This week's post is important to the topic of the blog itself. Perhaps you'll gain a little insight into the blog's title, "I Got Dressed By Myself Today... But My Underwear Was Backwards!" and how, on some days, this is quite the feat! Thank you to everyone who has been reading and supporting this project as I work towards sharing the experiences of females with Parkinson's Disease.
”Everyone has a plan until they get punched in the mouth” - Mike Tyson
This quote describes how my life plans have changed in the last three years. The thing with having Parkinson’s is that it’s really tough to make plans and see them through. My body and my brain are changing from moment to moment. In one moment I'm feeling cocky and confident - making plans for those future moments, days, and months! But in a matter of minutes, I’m reduced to an anxious, uncomfortable, bundle of nerves. Someone incapable of making any plans at all. My energy is consumed focusing on anything to get me through to the next 10 minutes when my medication will ease the unsettling feelings. Perhaps its some meditation, perhaps its scratching Scruff‘s ears... something to guide me to the next few minutes when I can feel a little better - a little more like myself.
It can be a bit of a challenge to be my friend or family member. I change plans, skip commitments, and often show up in less than great condition. This is very difficult for me to accept. These last few months have been some of the most challenging in this regard, since my diagnosis.
From an objective point of view, Parkinson’s is a disease described as a series of movement disorders. In my case, the left side of my body is most visibly affected. During my “off times” - those times when the meds I take to treat my symptoms are either wearing off, or have not yet started to work - I will display slow movement, awkward posture, a tremor in my left hand, and curled toes under my feet, which are now pointing in a direction that is not conducive to walking. This gives the appearance that my foot is dragging. Believe it or not, this is the easy part of Parkinson’s!
What you don’t see are the non-motor symptoms. Ok, wait a minute, what?
Looking back at my life over the last ten years, I had signs that this disease was present in my body many times. But because the early signs were “non-motor,” it was so easy for me to put them off.
Insomnia, who doesn’t suffer from the odd bout? We experience lack of sleep from having too many things on our mind, or looking forward to exciting events. Maybe you had an argument with your husband or even a cup of coffee too late in the day. These things can lead to the odd night of no ZZzzz’s. But my sleeplessness was rooted in a different source. I mean, real insomnia... Literally not sleeping for days. Being so tired, that a one-hour nap made me feel like I had just received the best gift ever. Another warning sign was constipation beyond anything that could be considered “normal;" sitting by myself, sometimes for over an hour, in the washroom in tears. I know this is tough to read, but to understand me, is to understand my disease.
I experience crippling bouts of anxiety, followed by crying jags that won't stop. I'm losing control of my bladder so often that I stopped going to bank machines and unlocking my car door with the keys. Both seemed to be a trigger. I plan my runs around where I can dip in for a pit stop. And most recently, I experience nausea and vomiting. This has been going on for a long time, but now it’s constant. I wake up every day with my stomach tied up in knots, hoping I can stay settled long enough so I don’t throw up the Levadopa. I do have an anti-nausea pill I can take with the Levadopa, but I save that for the days when keeping anything down isn’t possible.
Parkinson’s steals your sense of smell at some point too. With that comes a loss of taste, for me anyway. This combination has led to weight loss, and subsequently an unhappiness and worry about my body. I know, I know, it’s an uncommon complaint of a woman my age! But it’s truly unnerving to worry about NOT having the ability to gain weight. My wonderful, wise Grandma Webb used to say, “ there’s nothing worse than a skinny older woman. Old ladies and babies need a little chub, just in case!”
Oh, and then there's the Dystonia in my face and neck - a common movement disorder for people with Parkinson's that causes muscle cramps. These 'cramps' prevent me from driving, smiling, bla bla bla... You get the point! So it's no surprise its a bit tough for me to plan things, let alone commit!
There are things I can do to improve my odds of sticking to a plan though!
Daily exercise. The more intense, the better. Some days it comes easy (not really) but I feel like I can outrun it. This past week, I ran in the virtual Michael J. Fox Foxtrot 10k. This was a commitment I made to myself. I trained and organized my time so that I could be complete this with the most success! I even made a contingency plan in case I wasn't able to run that day. Well, the organizing paid off and I successfully completed my goal of running 10k! It wasn’t pretty, but it was pretty darn satisfying! I had my crew-of-one supporting me (Barry on his bike) and a beauty Vancouver day to help me along.
The other essential things I can do are rest and make sure I take my medication on time. These steps are vital to keeping my symptoms at bay. There are times when nothing seems to help, but sticking to exercise, rest, and timely medication certainly improve my odds.
Most importantly, I try to find a little bit of joy in each day.
After my 10k run, I treated myself to a little shopping/meditation session in the South Granville shops. I have made a few friends in these shops, since they are not too busy these days. I find myself talking to the shop owners, managers, and employees. I’m sure they love to see me coming as I often leave with a bag in hand! My most recent summer finds are a lovely sun hat bought at my favorite Bowen Island boutique “Wren”. This is a gift for a dear summer-loving friend with a very special birthday.
To go with the hat, I came across a lovely woven wicker bag from an amazing boutique on South Granville, called “Misch”. I can always count on finding something I love here and Scruffy often accompanies me, as well-behaved furry babes are welcome! The owners' French bulldog is often seen sunning himself in the window display!
Last but not least, is the “Turnabout” Luxe on South Granville. There are a few high end ladies consignment stores on the southwest side of Granville between W16th and W15th, and I love spotting a purple designer find there! I love to just browse through the lovely, bright, clean boutiques - my “Happy Place”. As it was Mother’s Day weekend, I treated myself to a few beautiful designer purchases at the Turnabout! A lovely wallet caught my eye, it even matched a handbag I already have. It's easy for my fingers to open and pull cards out. (My current wallet fails at this!) I also scooped up a beautiful pair of sky high shoes, that I’ll probably never wear out, but can wear inside to just sit and look fabulous in. Oh and they're purple!
Whatever works to help get through those tough stretches, and help make sticking to the plans a little easier.
Until next time, Jeanette
Editor's Note: Hello! My name is Lydia and I am one member of Jeanette's supportive team, helping put her words into the blogosphere! I help to edit, post, and manage the Instagram page. Jeanette loves to credit all the family and friends who help bring this idea to life, but I want to thank you, Jeanette, for sharing your insight and experiences with us! Your positive energy is infectious.
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