As I'm into my 5th year of living with YOPD and about to turn 41 years old in a couple of days it's oddly a journey that in one hand feels like it just started and yet feels like it commenced a million years ago at the same time. I still have days where I question myself thinking "maybe I don't really have it?" although they are fewer and far between then those thoughts once were. Usually a moment will come and slap me in the face and remind me that yup, you have it!
One such moment is when medication isn't working the greatest or you're required to come off meds, like I recently did as part of my DBS (Deep Brain Stimulation) testing. A couple weeks ago I travelled to Halifax, NS for three days on the road to getting approved (or not) to have this life changing brain surgery. I spent an hour in an MRI machine on day one, a difficult task even for a Parkie that doesn't suffer greatly with tremors when medicated, as staying still is not a Parkie's friend, for me it causes great stiffness, pain and eventually will cause tremors to come out. I took a double dose of levodopa an hour before in hopes to stay still yet hoping not too much to cause any dyskinesia. I managed to complete all the scans relatively easy, however when taken out of the machine had stayed still for so long I was essentially frozen in that position. It took two people to get me to a seated position and a bit of time to get me on my feet. Day two was about 5.5 hours spent with the neuro psychologist and his team for psychological assessments, cognitive tests and memory tests. It was mentally exhausting and I joked afterwards that if you ever want to feel like a complete imbecile go have this done. It was often frustrating knowing you were getting the answer wrong but yet not knowing what the right one was. And my what poker faces that team can maintain, no indications whatsoever if you passed or failed. Day three was then the dreaded "on/off" meds control tests. Where you stop taking all Parkinson's medication 12 hours prior to your 8am arrival at the hospital. One would think that's not so bad most of that time you'd be sleeping. Well, first of all I am awake 20 hours a day, on a day like today I've been awake since 3am after only 3 hours of sleep. I take levodopa every 3 hours that I am awake. So missing meds from 8pm to 8am was a total of 15 pills, a combination of regular levodopa, a controlled release form I take before bed and a dopamine agonist. Needless to say the result come morning is actually quite shocking. One of those reminders that, yup, you cannot function without meds and thank God you have them! Rather than any further explanation I'll let a short clip of some of the testing taken that morning do the talking. The top video's are me off meds and the bottom is a mere one hour later after taking them. The difference is quite shocking even to me sometimes!
I'm currently waiting for one more test, a daT scan as the last piece of the puzzle before I get my final answer on if I'm approved to get DBS or not. What I hope to be my third and final #YesToDBS the team does round table sessions where they review video footage and tests results bi-monthly and the next one is set for mid November. If by some small miracle I get this scan done previous to that I will make that session and have an answer soon after. If not I'll be in the queue for the next session mid January. As each day passes and no call for a date for the scan my hope to have an answer in 2018 fades with reality telling me it'll be an answer I'll not receive until the new year. But for now I must just stay positive, focused and have faith that it'll all work out.
Now speaking of a faith, sometimes we just have to dive in with two feet and take a leap of faith! Now this can be trusting something, trusting that God has a plan or a variety of different things. But how about taking a leap out of an airplane? LOL Do you have a bucket list? I'm sure most people do in some form, a list of things they hope to accomplish during their time here on earth? Hopefully top of that list is simply to be kind, teach our children to be kind, to leave a mark on this world of a positive nature. To live a life you can be proud of, one where you judge less, love more. I know this is something I truly strive for and pray that my children learn from me to always lend a helping hand, always help others, be compassionate, genuine, authentic people who help others when needed. All that aside many times our bucket lists have adventurous things on them. One of mine was to skydive some day. Something that's easy to say but will you actually do it or is it just a cool thing to list? Well, one of the things you are not allowed to do if you have DBS is skydive. Apparently velocity and wires in your brain are a bad combination and the harness you wear would press directly on the area of your chest the neuro transmitter/battery box would be implanted. So in a leap of faith that I WILL get approved for DBS, as opposed to hoping and waiting I made the decision in August that I was going to do it! I was gonna say screw you Parkinson's and to hell with you Dystonia and to heck with tremors from fear and adrenaline and to heck with all reservations I may have and I was going to jump out of a plane. When in the air with Dave the guy from Atlantic School of Skydiving he asked me why I wanted to skydive? My answer was simple, it's always been something I thought would be cool and wanted to do (but deep down figured I never would), that I was in the process of trying to get approved for brain surgery and if I wanted to do it I had to before hand. And most importantly because I want to teach my children that they can always overcome their fears, that they should never let anything hold them back from doing something they really want to do. That the 'sky is the limit' on what they can accomplish. I want them to grow up seeing their mother fight on, to do things I want and not let PD or anything else stand in the way. To never say "I can't" but instead replace that with "I'll try".
And with all that in mind, this Parkie jumped out of a plane and although terrifying to get out of it, the moment you were soaring through the sky, like a bird flying all fear was gone and it was just spectacular and amazing. I'm so very glad I did it!
So my friends, take a leap of faith. Trust that there are no coincidences in life, no accidents. That even the worst of things or moments can have joy in you search for it. Take a leap of faith...Go for it and try and get approved for brain surgery even though that's terrifying, but the result can be amazing. Try a boxing class even if you think you can't cause you're using a walker, you may be surprised at the results. Step outside your comfort zone and do something crazy, do something that your head tells you is beyond your limits. Leap into the air out of a plane at 10,000 feet! Whatever your leap of faith is, don't let fear or the voice in your head tell you not to do something you really want or feel compelled to try. Realize you are stronger and more courageous than you give yourself credit for whether that be something small or something huge!