***An adventure in Parkinson’s disease…. Today was great yet highly emotional day and i felt like i needed to get some more things out than i was able to at my Neuro-shrinks today and here is the place i come to do so.
I also saw my son today for the first time in months. ***3 days later….
See this why i use Instagram so often these days i start this 3 days ago and some how managed to save the draft and then i floated off somewhere in time. Sigh…. Speaking on time today I’ve my semi annual Neuro visit. These always make me nervous. It’s like being the only at school who has blue hair, so everyone all-day only talks about your blue hair. Not to say it’s a bad thing but when i spend a day of travel and doctors at this level reminding me that I’m fucked isn’t really my idea of best day ever. Sure I make lite of PD or rather my life with Parkinson’s disease, but in all reality it’s a challenge everyday. There are no more “easy days” whether its a cognitive decline or a physical issue eachday presents its own unique challenges. Really i suppose no different from any other person, my challenges are far more basic. Moving, walking, talking, staying balanced in any given moment or perhaps remembering what I was doing for the 700th time that day or hour. So this I woke at 2 a.m. and decided to just go ahead and stay up it seems that if I fight my insomnia then it’s worse on my body later so I made coffee watch The Clone Wars cartoons.
I decided to keep the title of this post for the love of it because lately I’ve been having great moments of clarity and the original reason I started this blog was because when I started to get sick or rather after my diagnosis I was in diagnosis for a year-and-a-half after diagnosis I reached a point in my research where I wasn’t really finding anything good or new fresh information on young-onset Parkinson’s disease back in 2012 when I started this blog it really was reaching out to the public about sharing my story. It was about understanding where all my physical pain was coming from and looking for groups of people that could I truly understand what it was like it was reaching out two individuals with Parkinson’s and other incurable disorders and or and of Life patients. Now five six years later with Parkinson’s disease and now cancer I totally lost track of what I was talking about sorry, right okay… so today, today is a tricky day because I’ll get to see my neurologist and like I had mentioned earlier it’s hard to spend a whole day when everything is focused on what the disease is doing to my body that’s hard it’s a it’s a hard thing to to focus on because you want the science to be good because people need to understand the disease to cure it and or to help people manage our symptoms.
Today I’m going up to OHSU for two reasons to catch up on my annual visit that I missed because I was sick at home due to radiation and chemotherapy also because about three weeks ago I started experiencing extreme neuropathy radiating from my neck down to my thumb on the left side of my body since then it’s spread to my middle finger change from just a sensation of being numb as if asleep to lack of pressured up and now too extreme temperature sensitivity. Once again I have to say thank you so very much to everyone who’s been with me for all these years honestly I couldn’t ever truly truly find the words to express how grateful I am and have been for your daily Comfort, prayers, laugh, insightful suggestions and just calm presence of being in my life. Thank you. There are some of you out there that have been literally or virtually by my side since I was diagnosed thank you. On that note please remember to always “Be brave be bold and thrive in the life you have.”©. for you never know when the life you love will change; and change will come so be ready .All my love, Benjamin.
“A life in progress.”2017.