#!?#!? Getting real……….moments of truth

The following is an excerpt from my journal *public, I’ve stayed away from my journal for a number of reasons over the past 4-5 months mostly because the things I needed to experience I needed to do so without being in the eyes of the public. Sorry bout that. Any how this entry is a bit science(y) but it speaks directly to “Pain with Parkinson’s” this was a topic is hoped to never write about again’ matter of fact it was the driving force behind me starting this blog nearly 3 years ago. Any how here’s the entry. I’m going to try really hard to not write about my personal life outside of PD because honestly nobody wants to know what I do behind closed doors lol.

The following entries are a daily recording of my journey with young onset Parkinson’s disease. I don’t sleep check, format, edit my thoughts or words so if harsh language or people being blunt isn’t your thing then by all means go away šŸ˜‰ I will not beĀ discussing or journalingĀ my private life in these pages as those are savedĀ for my eyes and those whom I can trust implicitly. I do how ever feel it’s important for the people who read this later after I’m gone to understand what it’s like to really live with Parkinson’s disease these Are all the things a patient such as myself could never say in the measly 45 min twice a year I get with my specialist team
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The following entries are a daily recording of my journey with young onset Parkinson’s disease. I don’t sleep check, format, edit my thoughts or words so if harsh language or people being blunt isn’t your thing then by all means go away šŸ˜‰ I will not beĀ discussing or journalingĀ my private life in these pages as those are savedĀ for my eyes and those whom I can trust implicitly. I do how ever feel it’s important for the people who read this later after I’m gone to understand what it’s like to really live with Parkinson’s disease these Are all the things a patient such as myself could never say in the measly 45 min twice a year I get with my specialist team
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
11/6/14 3a pst
I spent yesterday in bed, sans a small but costly time at PT. I’ve been really depressed lately and it been so hard or impossible to stay focused. Honestly my symptoms have me a bit worried an what’s worse is this isolated little paper tucked away in a website for of a million words is where I decide to tell my story. Sad really.
Pain let’s talk bout pain for sec, pain with pd presents itself to me in2-4 ways. 1. Stiffness. You may be thinking hmmm, but stiff doesn’t hurt does it. Noo it’s the moving after …. Say a whiplash or a major muscle strain. Well now imagine ever single one of your muscles down to the tiniest fiber feel strained.. Got it?? Now imagine that your body wants to do two things PD make your body stiff the medicine make you move = pain. So yes by proxy being stiff hurts ….a lot.
2. Neurological pain. “Central pain” For me this presents itself in 2 ways deep and excruciating muscle and bone pain like the worst Charlie horse you’ve ever had..ie: I once had my left calf “flex” for 3 days… Yes that hurt!!! So basically the signals in my brain forget their purpose and end up doing or telling the body the wrong thing..
3. Neuropathic pain… This one is really fun I’d say that over 3/4 of my body has a greatly diminished sense of touch or feel. So pd takes away my sense of pleasure am has replaced it either pain or a complete lack of sensation to pleasure, pain, heat an cold. Which in some cases can come in very handy šŸ˜‰ and others well not so much. Well that’s my ramble for the day. I’m sick at home with a sinus infection, I’m in 8-9 pain and I’m depressed. It’s not the prettiest story but at least I’m alive to tell it.

10/30/14 3p

Maybe I’m going to keep writing here maybe I’m not, I haven’t decided yet… I started this blog to find people of a like minds and it has taken me on a wonderful an most painful journey of my life and now I find myself wondering what to do with myself. My Parkinson’s is worsening my cognition is slipping and I often simply feel like a bemused observer with in this life. I’ve been feeling so disconnected to my life for some time now. Though it’s odd bc the second I stopped running from my life was the second I was found. And now I find I don’t know what to do with myself. How do I combine the monster and the man, my demons and human fragility with the passion that rips my heart and emotions apart daily as watch this body die…. My life, my heart, my perception.
Benjamin.
10/17/14 1-2am pst
I’ve started sleeping in the studio, it’s far past the time where I immerse myself back into my work and passion.
~~10/8/14 10:30p pst
Hmmm having one of those moments where someone says something that bugs you and you can’t figure out why……. Kind of a uncomfortable feeling. I think I question my happiness everyday. This “new” life is so thin…..
11/6/14 3a pst
I spent yesterday in bed, sans a small but costly time at PT. I’ve been really depressed lately and it been so hard or impossible to stay focused. Honestly my symptoms have me a bit worried an what’s worse is this isolated little paper tucked away in a website for of a million words is where I decide to tell my story. Sad really.
Pain let’s talk bout pain for sec, pain with pd presents itself to me in2-4 ways.
1. Stiffness. You may be thinking hmmm, but stiff doesn’t hurt does it. Noo it’s the moving after …. Say a whiplash or a major muscle strain. Well now imagine ever single one of your muscles down to the tiniest fiber feel strained.. Got it?? Now imagine that your body wants to do two things PD make your body stiff the medicine make you move = pain. So yes by proxy being stiff hurts ….a lot.

2. Neurological pain. “Central pain” For me this presents itself in 2 ways deep and excruciating muscle and bone pain like the worst Charlie horse you’ve ever had..ie: I once had my left calf “flex” for 3 days… Yes that hurt!!! So basically the signals in my brain forget their purpose and end up doing or telling the body the wrong thing..

3. Neuropathic pain… This one is really fun I’d say that over 3/4 of my body has a greatly diminished sense of touch or feel. So pd takes away my sense of pleasure am has replaced it either pain or a complete lack of sensation to pleasure, pain, heat an cold. Which in some cases can come in very handy šŸ˜‰ and others well not so much. Well that’s my ramble for the day. I’m sick at home with a sinus infection, I’m in 8-9 pain and I’m depressed. It’s not the prettiest story but at least I’m alive to tell it.

10/30/14 3p

Maybe I’m going to keep writing here maybe I’m not, I haven’t decided yet… I started this blog to find people of a like minds and it has taken me on a wonderful an most painful journey of my life and now I find myself wondering what to do with myself. My Parkinson’s is worsening my cognition is slipping and I often simply feel like a bemused observer with in this life. I’ve been feeling so disconnected to my life for some time now. Though it’s odd bc the second I stopped running from my life was the second I was found. And now I find I don’t know what to do with myself. How do I combine the monster and the man, my demons and human fragility with the passion that rips my heart and emotions apart daily as watch this body die…. My life, my heart, my perception.
Benjamin.
10/17/14 1-2am pst
I’ve started sleeping in the studio, it’s far past the time where I immerse myself back into my work and passion.
~~10/8/14 10:30p pst
Hmmm having one of those moments where someone says something that bugs you and you can’t figure out why……. Kind of a uncomfortable feeling. I think I question my happiness everyday. This “new” life is so thin…..

So there ya have it a glimpse into my heart, mind, body and soul. A dying man trying to find his way back to happy or at least something that makes me feel connected to something in this life….
** so please remember to always Be Brave, Be Bold and thrive in the life you have. You never know when it’s going to change…. And it will…

Benjamin
2014
“A life in progress”

**sneak peak
IMG_8383.JPG

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13 thoughts on “#!?#!? Getting real……….moments of truth

  1. good enough morning, dear one… i have yet to sleep and it’s almost not worth bothering with except for the other stuff that comes without sleep… like pain. i’m so sad to read of how hard this is for someone such as yourself. you’ve so much to give… keep pouring you into your work and your words. that’s what you must do to give some sense of continuity and purpose to your life. i hope your son is seeing you occasionally but do not dare even ask. just sending you energies to keep on keeping on. know my heart is there, my mind sees you strong and healing even tho the bs says otherwise. i refuse to believe what they tell me so why believe what they say to you? i must go but you take care of you, big bear heart of a man. (my connection/computer fried on me so haven’t been around. hoping that is fixed now. peace my kind friend.) xox

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  2. Thank u for sharing with us Ben…wish I could do more than just say never give up. You are an inspiration
    Hugs tight ā¤ļø

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