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.
And when I'm off, particularly in the morning this is what it looks like:
And when I'm on this is the drastic difference:
So after viewing the video and over an hour going over changes in old symptoms and new ones that keep appearing with the nurse we discussed yet again another medication increase. As well as trying medical marijuana in oil form to see if it might help me sleep more than my 4 hours a day and possibly with the pain from Dystonia... AND... we discussed Deep Brain Stimulation. Not only did we discuss it, he was eager to send a referral to the team in Halifax right away saying that with the information I'd given and the video's of the drastic difference in on vs off that he was confident I'm a prime candidate for the brain surgery. I always thought DBS was a great option and that I would someday get it done when it came to that, but I honestly thought I would have to fight for it, that the criteria would be so strict it would be hard to get. I was NOT expecting to have progressed fast enough in just 3 short years since starting treatment to be considering this option now. My mind wandered as we left the appointment to "why am I progressing so fast when I bust my ass to do everything the research says I should do to slow it down? Why do I have to have not one but 2 progressive neurological diseases when one should be more than enough for anyone to deal with? Why am I getting worse so fast? Is now the right time to do DBS or should I wait longer? What's going to happen in 10 years when I'm only turning 50 if in my 39th year I'm already this bad? All those questions brought me to tears, and I had a little cry as so many thoughts, questions and emotions flooded me.
So for now, I am doing a pramipexole increase and documenting any changes in the Dystonia pain, wearing off time of levodopa (as it helps level off the crashes). Once that's complete I'm going to try the canabis oil, just the CBD type (the non high stuff) for a couple weeks to see if it helps with the pain and/or increases my sleep. If there is no effect or not enough we'll then attempt a 50/50 combo of the CBD & THC oil. I'll be sure to post about this and my experience and if it helps or not. And while I'm doing all that I've been talking to many fellow Parkies alot of which I had the pleasure of meeting at the WPC about their experience with DBS. I'm grateful that my blog has created such a network of people I can reach out to for guidance and advice and support. So to all of you thank you for that. So far I've yet to find one person who's had DBS that regrets it, in fact when asked they have all said without hesitation yes, they would do it again. In fact most have said the only regret they have is they wished they had gotten in sooner. I special shout out to my friend John Alexander in Florida who took time out of his busy life to have a FaceTime call with myself and my husband where he could tell us all about his DBS procedure which he just had done recently and allowed us to ask him loads of questions. He was in no rush and I greatly appreciate it, so thank you John!
Regardless of all of this, DBS is a big decision. After all it is brain surgery, you are awake for 4-5 hours while they drill a hole in your skull and implant an electrode into a specific part in your brain. It was said by a neurosurgeon while in Portland that it is the most effective treatment for Parkinson's and the most under utilized. Combine that with the great reviews from people who've had it done and all say they'd do it gain, this is very promising. The biggest perk for me is not only will it help PD but it will help Dystonia which is a far greater concern for me right now. The second for me would be the ability to reduce medication drastically avoiding the dreaded Dyskinesia, which scares the crap out of me. The process in Atlantic Canada is about a year long from time of referral to completion of the various tests to ensure you are the right candidate to when you have surgery. So right now its a matter of me deciding not "if" I'm going to proceed with this process but rather "when". It's alot to think about and for now it's tabled until I have a conversation with my doctors nurse in about 6-8 weeks time.
