The following entries are a daily recording of my journey with young onset Parkinson’s disease. I don’t spell 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 😉 I will not be discussing or journaling my private life in these pages as those are saved 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.
It seems it’s been a while since I’ve spent some time here. I’m lost these days more than ever or May I just feel like the clock is ticking down quickly on the fun meter. I was just reading in my journals here online and thought damn it’s been pretty fucking crappy for the last 5 years. Sure there have been moments of what felt like would be forever…. Yet here I am to write about the grief I feel, guilt,shame,burden I feel for all the chaos and change me and my Parkinson’s disease have brought to my and others lives. Even some of the people I no longer speak to I’m still in admiration and thanks for the experience in life. As things have progressed and my executive Functioning decreases I’m finding that my choices and reactions are extreme often not in measure to the situation or my complete lack of ability to truly be able to decren the outcome of my actions. Better said the full chain of thought patterns it takes for a normal brain to make good safe sound choices 100% of the time. The scary part is sometimes I catch it and sometimes I don’t 😭😭. Being fully aware that I’m doing something or better yet not doing something that I should be but not having a brain that creates the feeling of urgency, that feeling of okay this really is the last episode of Netflix show x I’m going to watch or I really need to pay that bill I have money….. Days go by still no action.. it’s like my brain See’s, thinks about the behavior or action required then by the time I’ve figured out what I’m doing I’ve forget why I was doing it…. If that makes any sense. And I must say having ZERO sense of completion sucks… My brain literally doesn’t feel that feeling anymore.😭😭💔😭😭 Painting after Painting after poem after project and meal…. So little if any corrtexual satisfaction anymore. I est, I’m full. I paint time passes and I’m given moments of peace from the racing thousands of millions of thoughts all with colors attached to them each color having an emotional effect on me,, sometimes to the point of words falling from the sky and colors so heart felt. I ache as I bleed them from the depths of my soul onto the canvas of this lifetime.
Anyhow I’m tired now. Thanks for reading coffee people still read this lol probably not since I haven’t updated it in a year 🤔🤔🤔 shame on me. Talk soon. Much love and light.
9-14-17 I think the worst thing about how this life if mine has evolved.. I realized last night as I was at my after hours MRI. The nurse asked who’s your emergency contact? Sadly I didn’t really know what to tell her… I’m tires of living this life. People say live for he moment stay present. Well what if the moment sucks or the present means stage 7 pain daily since stopping all pain medicine. What if your life is riddled with issue after heart-break after fear upon fear coming true. Im tired of very day being a struggle. Im tired of being confused and sore. Forgetting most everything and then being judged by those who won’t take the time to truly know my heart, disease or ask the questions to find out. Just about everyone is gone now. The kids and ex wife. No lovers, nobody to that doesn’t want something in exchange. Tbh I’m not sure how much more of this life I want to endure let alone how much my body and mind can handle. Its been 6 years since my dx of Parkinson’s disease and 8 years having visible symptoms. Now with the damage from he chemotherapy and radiation therapy adding to the mental and physical burdens of this body. Not having a stable home and carer situation has left me destroyed. Hope to continue to be here but if i don’t make it.. Im sorry i wasnt strong enough to be the best version of me…😭💔
Im tired of crying myself to sleep and pretending that everything is okay. I miss my family and kids so much. They are all i ever wanted to have and now they are gone. My son, my daughter my wife of 15 yrs.my soul is broken and im not sure how to fix it. Ive been trying to for years niw since she asked to me to leave said she idnt want to do “this” anymore. Now they are happy and ibe nothing worth living for. They say it’ll get better but t doesn’t. My life stopped years ago.
1/9/2017things about cancer i haven’t talked about openly. The pain from the radiation burns or the constant nausea,the isolation and saddness. Confusion about where my so called friends have been and shocked by the kindness of strangers. Sadly between Parkinson’s disease and cancer life has own me who and how I can count on ppl in my life. It’s I’d don’t judge others. Well I kinda think that’s bullshit, if a person has set expectations for them selves then they’ve set expectations for example people you want I know right life. Idk I just think this whole don’t judge me crap has gone on far enough. If you do stupid shit you will be judged. If you steal, you’re thief,if you lie you’re a liar people need to stop using this judgment game as an excuse for poor social and online behavior. Anyhow my nauseous rant gonna puke some more 😷😭
What a fucking year a special note to those friends and family that aren’t here for my cancer journey. Fuck you.and to those special special friends. Katelyn and a few other special friends. Normally I’m actually a pretty nice guy. But you young lady there is a special place in hell for users like you. 😈😈😈
I feel like absolute shit. I’m so heartbroken it’s fucking stupid and I’m gonna beat cancer and flip the fucking world off and move. Because fuck you. There I’m done being mad and can go back to being a nice compassionate person.
Oh yeah ex with cancer 11/05/16
Broken up with Katelyn in July back together in September in October dumped by the bitch again. Ruin a relationship with a dear friend. God I’m stupid.
it feels like the end again. i was gone for 4 days and three nights in hope she would realize i have value. buti fear the only reason she asked me to come home is because she was broke and needed me to sign the vouchers. shes becaome secritive with her phone again which to me means one thing. that shes slipping back into her default slut mode. i keep trying to correct my behavior, monitor my tone, check my emotions and really soul search before i speak. yet for two days know everytime i try to talk, im coming across rude or mean. 😞😞😞 personally i think she simply doesnt like me. she just filed for her tax returns and dollars to dougnhuts we destruct just before or just after her check comes. we shall see.
b, sick to my stomach from stress. emotion tension makes my PD much worse. im not sure even if katelyn has been honest with me that i’ll stay. she lied about Carrinton and who shes been talking with. it feels like im being used. or takem advantage of.
I’m so sore today from swimming yesterday. The muscles in the back of my shoulders are starting to give way a the front shoulder muscles pull my shoulders forward in what feels like an internal game of tug of war. I’ve lots of errands to run today though I imagine I’ll be doing them solo.
I took a few days off from my “life” spent some time to reflect on somethings in my life. I’m working hard to believe that life’s not just going to fuck me over again. My trust has been broken to many times and words have been read,heard,spoken that can’t be taken back. I’m not in hell. I’m in limbo.
One of the worst feelings ever, being excluded from family activities.
Sitting at home while my partner is out doing fun shit that I wasn’t even invited to attend, Super fucking grumpy! !!.
And the sad part is I don’t think she even gets it. I’m sitting here doing fucking laundry, cleaning house and whatever. When you’re in a loving relationship aren’t significant others supposed to be invited or at least pleasantly explained to the reason they’re not?
I’m alive and thankful. It feels like nothing in my life is secure and I hate that feeling. Honestly at this stage in my life I’d rather be than insecure about my future. When things go wrong it feels so broken, my body and my heart feel so sad, stiff and unattached.tired. My Parkinson’s disease has been kicking my ass lately. My meds have been fucking with my head and my girl is sick,depressed and girl time all at once. Fml
Today’s worse than yesterday, woke up with wires all over me and a raging gf, her reason was valid, I should have remembered that G commented on a post and I replied. Explosions afterward. I’m so tired and so fatigued from the stress. I haven’t sold a painting in 16 months, my art is suffering, my health is suffering. I have virtually no relationship with my boy and K boy treats me like poop 60% time. This life has been nothing but trails. When I look back at my life I don’t see rainbows and happy I see pain and regret. Sorrow and fear.
Mostly with glimmers of gold, I keep fighting to be happy and spread joy and hope…. But I look back and realize it hasn’t gotten better it’s gotten harder, the pains are deeper, the longing more aware. I need sleep… Good bye
11/24/15 * sleep study ohsu
I’m so tired of this life, pretending day in and day out that I’m happy. Sure I have happy moments and good memories but I’m not happy. Les face it, the facts, my wife if 17 years kicked me out almost 2 years ago and hasn’t spoken but a dozen words to me since, I’ve got advancing Parkinson’s disease my son resents, dislikes, hates me or at least it seems. The daughter I raised hasn’t spoken one single words to me and I’m stuck here in Salem with no family. My girlfriend is a 25 year old manic depressive with a 6 year old, I can’t even begin to explain what that’s like. I love her dearly, but wow. I’ve a whole new respect for true mental illness. Anyhow I’m off to OHSU for a sleep study. Happy fucking holidays 🙂
11/9/15 7:00a pst
well ive reached a point in my life where i truly dont know what to do. The person who ive been seeing we just had a huge blowout that im not sure i can recover from. her and her son treated me very poorly, then she decided that she no longer wanted to support the relationship im trying to repair with my son….. well i can tell you ladies and gentlemen as a single dad having a partner that does support your child….well that relationship is over, dead in the water. So im not sure what im going to do, this all transpired yesterday so the wounds are fresh, my heart is sad and empty. the one person again who is supposed to biuld it up has torn it down. this relationship is a fucking yo-yo.
10/31/15 8am pst
its been a year and my hearts still broken, the lines of pain have become so blurred. guilt from my choices, anger at others choices. ii have a compainion for now, though i feel in my heart she’ll be on her way. im numb yet full of fear, im hot yet cold in my heart, im cold yet on fire in my head… in short, im lost. 45 years old and everything all of my lifes work is gone. my family, my journals, my job, im left this shell of a human wondering what the fuck happened. ive parkinsons disease, thyroid issues, trust issues. ive exhausted the love and patience of my extended family. in short each day i pray for clarity and each day i fear what suprises the day brings. so often i wish i could just drift off to sleep, or wake from this nightmare. the pain in my body, heart and mind has grown so great i fear what the future holds. i worry that the allure of deaths silence will soon out weight the fear of death itself. tears…..
10-20-15 7:40 pm pst
I hope you read this. Fuck you for leaving me. It’s funny how quick you were to run to him (CG) 3x’s the moment you felt it would hurt me yet please you the most and here I am know going to bed alone. Fuck you. And when did you last say “goodbye” to D after 9/2?????? Fml…!!!!!!!!!!!!!!!!!!!!!!!!
I’m so fucking mad and hurt right now I HATE THIS FEELING.
I’m tired. Katelyn and I are arguing. Apparently my tone is crappy. I really wish I had more control over it. First thing this morning we get into it. I’m not even awake and I’m feeling like I’m being attacked for something I can control. It pretty much sucks. Sometimes it’s tough, I still hold so much anger and mistrust towards K because of what she and CG past relationship was like. Ever 3-4 months she can’t seem to help herself. I’m just not sure what to do. I think that if it happens again I’m done. I’ll hide for a year until boo turns 18 then I’ll move to Canada or the Uk. I’m just tired of being a punching bag. I was M’s punching bag for her anger toward her brother and her Father and now it seems the universe has seen fit for me to deal with a bi-polar manic depressed person.
Another week of doctors unfortunately. As I sat down resting yesterday thinking I’d have the week coming free then I remembered I have a colonoscopy appointment tomorrow!?$&?!$?&,
So today isn’t going to be a relax and paint/clean the house day….. Sadly I get go take this special body cleanse stuff an poop all day 😦 and in top of that I’m still waiting for my cancer screening results fuck this is getting frustrating. CANT IT JUST PAINT!!!!!.
I’m fucking tired and really don’t give a rust fuck about much if anything at this moment I’m time. The girl is being 25 and the small human is a time bomb. Fuck!!!!!!’
9/2/2015 7am pst
Good morning as I sit here and think about my day fear begins to creep in. Why? Because today I go and figure out what’s up with my thyroid. I was tested twice with low thyroid juice so