In the earlier part of fall, I had new testing, or is it new if it’s done every so often, maybe not new just retesting at the Kelowna Clinical Trials. They test various areas to see where you are being impacted the most and what areas are seeing the most changes and or improvements. At that time, most aspects I have been holding steady, and by that I mean no significant decrease since my last tests, but the area that controls things like my ability to recall had taken a significant hit. Yesterday, I was once again tested, not at the same place this is testing 5hat is done every year and half approximately, it is a 2.5 hour testing done via telephone, again in many of the ares testing, and I can tell you cognitive testing is exhausting in itself.
Well the area that manages things like my ability to recall has taken another hit. I knew I have had more difficulty with it but do the degree it is now effecting me was quite unsettling. Most people don’t realize how much of their time they spend recalling things in a day. If you stop and think about it just about everything you do involves recall of some type, from the simple, where you keep your socks, to the more complex recall of things, people and places and events in your life.
This all takes me to why I take so many pictures, they trigger memories, in essence help me recall things, events, places and people that I otherwise no longer could. At times they are what helps me build time lines, however even that is becoming more difficult. What usually happens is that looking at pictures will spark a particular feeling, anything that I connected with at some type of emotional level, good, bad, happy, sad, whatever the emotions, will help trigger the memory. Sometimes things like on Facebook will come up with a photo of a memory, it then sends me to go looking through photos to piece together what that memory is supposed to be. I can no longer tell you exactly when I ended up off work, when exactly my diagnosis was, but I can tell you how I felt at those times, I can no longer tell you when I sold my house or where I went to from there, I can tell you how I felt selling my house.
Which brings me to where I ended up again today, looking at photos, recalling a time, a place, a trip, one of great significance for me,
My trip down the Oregon Coast. With my beautiful little car which I miss dearly, and my girlfriend, who I also miss dearly, but as with all things life changes, and we must adapt, dry our tears and forge ahead.
This trip was significant because I had just recently been diagnosed, I was a lost soul in search of answers in search of who I was know and who I would become. It was a time to breathe, to exhale, to try to calm the fear that was running through me. Which of course comes with a dementia diagnosis when you’re told to get your affairs in order that nothing can be done. You are swallowed up by fear, all I knew was what I had worked, end stage, late stage dementia. Not one person I knew had an inkling about early onset. Going to the ocean was my place to figure out how to breathe again, the ocean or water of any type really is and always has been a favourite place for me to be, always where I felt the best and at that time I needed to be somewhere we’re I could somehow find a way to feel good. My girlfriend was the perfect travelling companion, exploring beaches up and down the coast.
It’s still a place I go to on my hard days like today, struggling with the realization that for as well as I’m doing there is more challenges that I deal with,it impacts me everyday, and I can’t run from it, I can’t hide from it, I feel it’s impact every day all day. It takes time to settle in with the realization that there is this new normal, somedays it’s hard, so you take yourself to a place where it felt good, this trip is one of my go to places. It was a journey to absorb something few can imagine being dealt, but it became a trip filled with beautiful moments and memories, of healing of letting go, of figuring out oh to be.
I will always be grateful to my girlfriend for going on the trip with me, I will always be grateful that I did what my soul needed me to do.
Today had been hard, it’s been an emotional day, it’s been a day of once again trying to be ok with things that’s not ok, but unchangeable, so you dig down deep be grateful for all the ares you are holding steady, and once again tell yourself tomorrow is a new day.