Three years ago today I was confused, a little scared but yet relieved to finally be getting answers and torn as to if I wanted the meds to work in turn confirming my diagnosis of Young Onset Parkinson's or not wanting it to.
Three years ago today I picked up the RX & swallowed my first pill of thousands to come and started on the journey of treating YOPD.
Alot has happened in that three years, I was "officially" diagnosed a few months after treatment started, I came to the realization that returning to work was not going to be part of my future which caused me to have a loss of identity, I threw a few really good pitty parties, I met some amazing people that I now call friends and that are like family to me. People I never would have had to the pleasure of knowing had it not been for this fork in the journey. I somehow became a writer of sorts, connecting me with the world for advice and support. I organized events for fellow Parkies in PEI to try and get them thinking outside the box and trying new things like horseback riding, boxing etc... I attended the most amazing health conference you can even imagine, the World Parkinson Congress, in Portland Oregon last fall. The only conference like it where patients, doctors, scientists health professionals and more all together for a common cause. I cannot wait to attend the next in Kyoto, Japan in June of 2019! So much has happened in just 3 years.
And then there's the progression, the often slap in the face to ones positivity, to ones attempt to hit the gym and workout (the only proven way to slow the progression of PD), to ones focus, to ones mind, body & soul. My motto has been Screw You Parkinsons and later Dystonia was added to the end of that line as I've developed it as well. I knew I was progressing, particularly in the last year and despite all my efforts to fight, however in reality I had no idea to what degree. I have been steadily adding new and increasing medications for three years now. As the Dystonia got bad, Pramipexole was added to try and help with that and to lesson the crash from "on" to "off" from levodopa. As mornings became increasingly difficult to get moving double doses of controlled release got added. The time between doses increased with time and so on. I had often wondered when talking with other Parkies who are older than I and have been dealing with the disease often for much longer how it is that I was on so many more meds then them and yet I seemed to be in much better shape, and able to workout at boocamp and do alot of things they couldn't. And then the last weekend in April this year hit and I was given a rude awakening a glimpse 3 years later in what life would be like without my many pills a day (24 currently, 2 prescriptions, 3 types). I got the stomach flu my children had despite all my attempts to disinfect and not get it. I knew the thoughts of not being able to keep meds down were scary but I really had no clue as to how much. I started vomiting on a Friday evening, through the night and into the following morning. I could not keep anything down let alone my medication. I missed a total of 7 pills, a dose of levodopa, a dose of pramipexole and my bedtime controlled release levodopa over the course of 12 hours. By time time 7am rolled around & I finally could stomach taking a pill I manged to roll myself close enough to the edge of the bed to reach the pills off my nightstand and take one. I was so stiff, in an incredible amount of pain from it and all I could do was lay there praying it would kick in soon while tears streamed down my cheeks. About 45 mins later I thought I might be able to get to my feet, for the first time I needed the cane I had bought to keep by my bed that I hoped I'd never use. It felt like a painful eternity to get standing and the hallway from my bedroom to the kitchen felt like 10 football fields long. My tremors were extremely bad, something I don't usually have a huge issue with, my feet were glued to the floor, my body hunched over and it was all I could do to not just keep crying.
I posted a video that morning of my feet trying to maneuver on a Broken Bodys Journey's facebook page you can see it at this link: www.facebook.com/BrokenBodysJourney/videos/1948207135401014/
There was definitely a lesson in that painful morning along with the slap in the face I got as to what my progression had really been like. I have to some degree despite trying to remain positive resented those pills I take everyday. When the many medication alarms would go off on my phone many times during the day I'd still have that Ugh, eye roll kinda moment. Let me tell you, now that I had the glimpse into what life would be like without all those pills I never want to experience it again. I have a new found gratitude for my medication and when the alarm goes off now I am thankful I am able to take it.
So I ventured off to my bi annual 750km return trip to see my movement disorder neurologist last Monday. This time for the first time knowing I needed more meds, as opposed to being in denial or with the mindset I'd fight a med increase again. The Dystonia I have has gotten quite bad particularly in my calves and the pain it causes in the heels of my feet can be excruciating, and I knew PD was getting worse too, especially after the flu experience. This time I had video's to show him the drastic difference of me "on" versus "off". When my meds are on I can do burpee's at the gym with a bosu ball and when they aren't working I need a cane, shuffle and am in agony.