For the love of it.

***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.

Some mornings

Some mornings, I don’t want to be me. Some mornings, I fear of the day that’s coming to be. Some days I wake. Wander and Ponder some days. I wake and I can see no yonder for tomorrow’s forbidden today I must say, that’s some days never come it’s always today.

I live in fear as my arm grow weaker. Some mornings are hard when the pain gets so great, that the lord i will seek, with mounted emotions and renewed devotion. Please take away these quakes and these shakes.. Some mornings are hard when this body does fight,it twists and it turns with all of its might .Muscles that grip at nothing in sight, gripping so hard with all of their might. Keeping awake all of the knight….

Some mornings I sit and wonder if I have the strength to be that kind of guy. That fights everyday angaist a body that struggles to do simple things like take the next step. For chemicles lacking has become such a thing, that making decisions a bell doesn’t ring to say which is right or the wrong thing.

Some mornimgs are hard when I must simply be…….Me.


“A life in progress.” 2017

© 2017

Some time ago now

There was a time when the touch of your hand would make my heart flutter. Now I can barely feel my skin.

There was a time when to listening to the softness of your voice would cure my worried mind. Now echos of it haunt me like demons in the night, hiding in the shadows waiting until I least expect it.

There was a time when all of heaven shouted your names in praise of what was to come yet it was never enough. The greed and temptation of humankind has taken you from me.I’m left here an empty shell of a man past hos prime with dreams that would daunt even the most foolish of hearts.

There was a time when I could clearly see the future we had made coming into focus around me. Now I struggle to find the names of the day. Lost in lifes holding pattern as I try as I may to keep my head above the darkness  that lay before me.

There was a time when the stars shined more brightly, the breeze more fresh and the sound of a childs laughter more delicate than morning sun at first light. Now the tome my very voice escapes me.

There was a time when everything was clear, but that, that was some time ago now. The end.

Benjamin 2017.                                          “Be brave,be bold and thrive in the life you have.”

Baby stepping in big boy shoes.

Greetings and salutations. I just wanted to give those of you who keep intouch with me only here an update from my 30 day post treatment visit. My Dr said my tumors are gone,visually there is no sign of my cancer. Since it’s not a blood born cancer I have to wait 90 day to flush the bad stuff out and heal before they do my pet scan. In mi April is when the pet happens and that’s when I’ll find out the true true on an inside level. So how to take all this…?
It’s good news! Now on to the healing part. It’s going slow and fast. The tissue in my mouth and throat is Helen quickly but my jaw bone and teeth are messed up from the treatment. I’ve about 4-5 teeth that are going to need to be pulled and the jaw bone Dr says will heal in time, how much time who knows. I’ve been told anywhere from 6months to 2 years to never. Some of the damage done during radiation therapy is permanent. Nerve and muscle damage that 30 radiation treatments cause to the human body. So all in all I’m good, I’ve lots of healing to do and lots of packing to do. Still need to find a place to live but I’m not worried I’ve a less that perfect but place to go when needed and a place to go after though far away but as it stands now I’ve one or two reasons to stay and 500 reason to leave. Who knows where my hurt heart will land.
Anyhow that’s the skinny on me B. Not dead yet still shaken my bacon and painting for you. What happens next I haven’t a clue.
Cheers B.
“A life in progress.”