***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.
Here as I wake in safety of my house, 3am and I’m reminded of my conditions as they course through my body,mind and soul. I take a large breath and begin my day; and I’m thankful, grateful to be alive. Sure I have cancer and yes Parkinson’s disease will take my life and mind before I thought it may 46 years ago. But you know it’s okay, I want very little in this life anymore, to spend time with my son, to paint ,travel and write. Simply to be alive at this moment in time is enough. This body is wrecked with pain everyday. This mind so full every second of every moments moment. Yet I have my life and so much more. Please I hope all of reading this take away one thing from this. Live each day to its fullest. Plan for the future but live for the day. Experience it as deeply as you know how. Listen to people but follow your heart. Try not to judge others but do judge yourself for you are the only one truly accountable for your actions and behaviors. Love,laugh and live eachday as of it was your next to last and when the final time comes you’ll be ready. Today I live peace and gratis I wish the same for you and yours.
Much love and light. Benjamin 2017 “A life in progress.”
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.
I’ve been a bit MIA in my own life recently and I apologize for that, honestly I’ve been letting my depression get the best of me. Granted it’s a great excuse or reason to isolate myself and focus on healing from my cancer treatment. The PET scan is still a month away. Crossing fingers already lol. I’ve been getting out about once a week for human contact and I have usually one visitor a week so I do get to have actual conversation(s) with real face to face people.
I’m not pulling any punches here so if you’re feeling sensitive or worry easily I’d not read further if I were you. Fair warning ☺. I’m growing more concerned about my left side. Since my radiation treatments my neck has been rediculously sore I’ve had almost a constant headache and I’m slowly losing the use ad feeling of my left arm. I’ve already lost the feeling in my thumb and index finger. My arm ofter I find is chicken winged up next to my body. It feels like there is a direct relationship between muscles in my shoulders and neck and the lack of strength and feeling I have in my left arm.
My body has been pissed off at me lately. Parkinson’s symptoms up 100% from what they were, cognition, balance,fatigue all way way worse since cancer treatments. Honestly it’s fucking rediculous, there are days when I’m so tired it’s literally all I can to simply wake long enough to make myself some food in between 4-5 hr naps. I’ve almost completely lost track of day/time/month. Sleeping so much can really throw off that whole keeping track of stuff. Anyhow I’m rambling and please don’t think I’m complaining these are simply the facts and reality I’m living with on a daily basis.
I’ve been painting through this whole cancer process but I’ve only finished and given away a few pieces so far. Mostly to those Angels stateside that I could easily repay their kindness during these most uncharted times.
Not complete at all. These piece is actually being painted as a gift. It’s title is or will be, “The forest through the trees” it is in honour of those in our lives that help to give focus and kindness when we need it most.
Sorry for the crap photo, I thought I had better pics of this one, possibly on my Facebook. Sorry I’m losing focus, something I struggle with all day long. My thoughts have been shifting gears so rapidly that I find myself freezing in place as if stunned in thought. I’m pretty sure that’s that’s a Parkinson’s thing. Right then before another day slips away I’m posting this darn thing. I love you all so deeply. Thank you for your words of encouragement and wisdom. Thank you for sharing you’re similar experiences with me so I don’t feel so alone. Having Parkinson’s disease is hard enough but fighting for my life against cancer with it has been at times unbearable. So to those of you whom have helped along the way again bless you, by however of your chosen chosen god. But seriously truly my humble humbling gratitude and thanks to all of you.
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.”