It’s been over a year now since my last post. It’s not that I didn’t want to, I did, but it’s been a tough year. I put the progress in the word progression, when it came to Parkinson’s, and not in a good way! I just couldn’t focus enough to read for any length of time, watch tv, or any screen, let alone find the focus to take words from my slowly depleted dopamine stores in my brain to write the words on paper (or type!) them creatively to write this blog. Did I ever want to though, but unfortunately, there’s no “A” for effort, for a creative writer unless there’s an end product! So, here I am writhing around in my kitchen, giving it a go, despite pulling out some of my amazing “Disco moves“, an affectionately known term in the Parkinsons world for Dyskinesia!! (Involuntary, erratic, writhing movements of the face, arms, legs, or trunk. They are often dance like, and are a product of the increasing amounts of medicine I take to keep my Parkinson’s symptoms under control). A bit uncomfortable but nothing like the pain and cramping I get from the Dystonia in my feet, cramps so intense that my toes curl under, and won’t release. I liken it to having two “stone” heads of cauliflower on my feet - makes walking a bit challenging! The left side of my body is affected by it when in an “off” state. Claw hand, “hanger pain” in my neck and shoulders, my face left expressionless. Maybe not all, but most should be better with the DBS. I’ll start at the beginning of last year, as that seems like a good place! Since my diagnosis, five years ago, I had been pretty successful at keeping my Parkinson’s symptoms at bay with a combination of medication (increasing from a little to a lot) exercise, support of family, friends, and therapy (marriage, personal, and hypno!) and a general positive attitude. It was successful, until it wasn’t. At the end of my neurologist appointment in January/22, my doctor brought up the topic of DBS (Deep Brain Stimulation) surgery. Had I considered it? I hadn’t as I truly didn’t know much about it, and quite frankly, didn’t think I was at that stage yet. Now it was on my mind. She thought when the time is right, I’d be a good candidate. “Really?”, I thought. It turned out I was progressing a little faster than I had earlier. I had met a few people who successfully had DBS, but I had not really thought too much about it, for myself. I was quickly warming up to the idea after I got sucker punched by a bad bout of Covid in May of last year. It took a long time to recover from that and I continued to lose weight on my already depleting frame (Thanks again "Disco"nesia!) So, at my next neurologist appointment in June of 2022 I was feeling beat up and ready to discuss the DBS surgery with her. (By this time my husband and I had done some research and were ready to act on alternatives outside of the backed up system in BC). To my surprise (and delight) at this appointment we didn't have to bring up the idea of going to another province to have the surgery happen sooner as my neurologist (THANK GOODNESS!) was already thinking ahead and before we could mention it she said she would like to put me forward as a good (ok, maybe fabulous!) candidate for the surgery. A "good candidate" means: I was relatively youthful, had until recently been able to nullify some of the effects of PK through exercise and most importantly was still getting good "On" times with my medication. Basically, the surgery generally works if the medication still helps you function well at some point in the dosing schedule. In fact, the success rate is high, like in the 95% range for those who have a good reaction to the medication. For many of those with PK who don't get a good (or any) reaction from the medicine the surgery generally does not work. In my case, I am lucky and although not continuous the medications are effective for parts of my day, but at a declining rate. And as I like to say, to make a long story longer, my neurologist put me forward to have the surgery done sooner rather than later and 7 months later I am on the calendar to have brain surgery performed. And could i have not gotten any luckier, my DBS SURGERY DATE IS SET FOR APRIL 11th AKA WORLD PARKINSONS DAY!!!!!! WOW! I think I’m about to be the New Poster Child for Parkinson’s! We’re not only seeing White men in their 60’s as People with Parkinson’s, there’s some like me, Young Onset, to raise awareness, that if you meet one person with Parkinson’s, you meet one person with Parkinson’s!!! So in the emotional rollercoaster ride that is this disease, we just got a giant lift that may just change my quality of life or at least stabilize it until a cure is found. DBS, Deep Brain Stimulation. As this is a blog, I won't go into all the technicalities of the surgery but the information is easily accessible on the internet if you are so inclined. On a simple basis it involves brain surgery while awake (Yes, while Awake drilling into my brain!) and yes I am interested because of the very high success rate. the implantation of electrical nodes in the brain, connected to a transmitter in the chest or abdomen which emits a electrical current. As the neurosurgeon who will do the surgery has described, the surgery has a chance of keeping you more consistently at the level you are at when the medication is working the best. A little more defined it is Brain Surgery, while awake, on my head! My head! All of a sudden I was very interested in this surgery that has a 95% success rate! ( these numbers are this high as basically they know which patients the surgery will work on). If you haven't seen it I've included below a link to a recent article written by the host of a CBC program in New Brunswick and his experience which mine could replicate. Be sure to watch the video.
Now what? I had managed to stay healthy, despite my Parkinson’s, and now I would be fast tracked to the grand prize of Brain Surgery! I learned that I was one of only a handful of people put forth by my neurologist for the surgery , everyone wants it, because it has such a great reputation, but not everyone can have it as there’s very particular criteria to meet to qualify. So, everyone who is presented to the Neurosurgeon usually does meet the standards!
Well, that fast track is now another six months later, but I have a date. April 11, 2023, my World Parkinson’s Day will be a little different from the past. It will begin the day before, with an admission to UBC hospital, where I’ll undergo another MRI, having had a specialized one two weeks previous. Then I will be fitted for my Halo, a medieval torture device screwed into my forehead and behind so should I even cough during the surgery my head won’t move. Then my favourite part, having parts of my head shaved! Funny enough, this was the part that gave me the most stress ! I love my natural long blond hair, that I proudly bragged was still without grey! (yes, my hair stylist Stef will vouch for me) but if I’m being really honest, I can’t take care of it by myself and I would ask anyone around to brush it as I just couldn’t do it anymore! I was giving 1969 Janice Joplin a good run for her money, as my hair just got bigger and bigger! Anyway, I jumped ahead and am now sporting a platinum and purple pixie cut that I can take care of all by myself!
After spending a night in hospital, the next day involves a six hour brain surgery while awake, followed by another surgery (thankfully under a well deserved general anesthetic sleep to implant the “pace maker “ like device (neural stimulator), that will control the electrical stimulus with the help of a smart phone. The device is commonly placed in your chest just under the skin, but thankfully, because I’m so thin, and have virtually no body fat, it will be placed near my tummy! (This works for me as I am still a little bit vain, despite my fragile and frail appearance! Years of teenage modelling, and fashion shows dies hard apparently!) Then, after a night and a day of rest and recovery in the hospital, I will be sent home in the care of my favourite humans - my husband and my sister and children - where I will stay in the city at our apartment which we love, for two weeks as I need to stay close to the hospital, in case of infection. If signs of infection show themselves, I need to get to the hospital ASAP as it can derail the whole thing, and before even going through it, I know this is an experience I really want to have only once! My house on Bowen will have to wait for me for a few weeks, but when I’m home, it’ll be where I stay “Til I gain control again!” (Also, one of my favourite Blue Rodeo songs!)
All along this bumpy road many people have asked me “are you afraid to have the surgery?” My answer remains the same, “No, I am not afraid!“. I am more afraid to not to have it! In the past six months I have been tested..... oh boy, have I been tested! I have loved harder than I knew was possible, and at times wondered how I would get through this agony that the disease presents everyday, but all that love surrounding me and smacking me in the face keeps me going!
I have lost so much in the last six months, weight, independence, my hair, my confidence, many other things, but now and then maybe I catch a glance of the old Mean Jean the dancing machine, and remember she’s Still there somewhere just busting to come out! When my favourite pair of leather pants slipped off my tiny bum, (someone call 911, someone stole my bum!) someone always reminds me how much I love to shop! From far away to really close I’m rarely alone and even less I’m rarely lonely. I love you all. I will write about the dirty details later😯 > J xo
