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 team
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, they’re seeing me today to see if I’ve hypothyroidism or what. To be honest I can’t help but be nervous, having Parkinson’s disease is hard enough. I really don’t want yet another issue. PD update pain: 6 rigidity: 7 balance: 5 1-10 scale 1= no pain 10=go to ER okay then I’m back to bed for a minut. Much love and light, B.
It’s going to be such a huge day, I’m off
To see my son, it sucks because I currently only get to see him on Sundays 😦 but I’ll be going to court to fix that. No offense to the women who may read this but what’s society’s deal with simply giving the mom full custody when parents divorce? I mean I’m fit, I raised my son his entire life just as my partner did so why does the male get fucked in divorce? Equal rights!!!!!!!! Anyhow the Brian Grant fundraiser is tonight, a little celebrity elbow rubbing is always fun. Anyhow my PD has been kicking my ass of late but I’ll survive. Though I’m a little worried my thyroid test came back low for the second time so on the 9/2 I go see a thyroid Dr. 😦 anyhow cheers to another day of living.
It’s a day, K and I are on opposite sleep schedules today. It’s lateish here now I’m tired, sore, achy, blah… I need to paint… 😦
At times I’m so unsure… Like licks of flame the insecurity creeps in. One more time, one more indiscretion and I’m gone, I can not and will not risk my heart and health for lives sake. Honestly I’d almost rather be dead than go through anymore bad or distrustful relationships. Twice in the last year have I forgiven out of love an fear and hope that things will change. I can’t keep doing it. It’s ripping me apart. TBC…
“You got served”
yep, its true. The divorce is almost final. I haven’t spoken publicly out about any of this over the last year out of respect for my ex, Marianne but now I’m MAD. I feel,completely fucked over. Nearly 17 years of my life, completely faithful, hardest working Dad on the planet, just like the rest of those good dads out there . Then comes Parkinson’s. So first things first, Divorce ugly, hurtful, dirty business on its best day. When I was asked to move out after coming back from a spiritual and business trip, I did, I begged cried, stomped, asked for more couples counciling but I did what was asked. I gave up everything for the happiness of my family even in divorce. I’m not sure what’s it’s like in other states but in Oregon divorced parties are entitled to half. Me being entitled to half even as a guy, male. Well at the time being respectful I left everything at the house because I thought “this can’t be real” well yeah it’s real, I don’t give a shit about the stuff, it’s stuff they’ll make more. But my son on the other hand …. I WILL NOT GIVE UP. ITS WAR. I’ve never been arrested nor even an unpaid parking ticket. I’ve defended our country. And now the term ” in sickness and health” burns my ears. Soooooooo pissed off, TBC……
I’m tired, really really fucking tired both emotionally and physically. A very dear friend and I had a serious breach of trust that has left me questioning my choices. Questioning if I’m even fit to be out here in the world on my own. Sometimes I wonder if I’m the crazy. Right now my heart is broken an my trust is at an all time low. I’ve been trying to convince myself that it was a “one off” but honestly right this second I’m not sure. Living with Parkinson’s is scary shit. It puts strains on every single aspect of life.
So here we are again, it’s good to see your still here checking up on me. Life I tell ya has been challenging me in ways I can’t even explain. Lessons of what it means to love and receive love. What it means to come to terms with loosing dreams and finding new ones. Challenges in dealing with mental health both mine and others. My Parkinson’s has been progressing like what feels a freight train and since there is no predictable track for PD I’ve know idea if this is fast or slow. Things haven’t been that great lately there’s been a lot of bickering at home and for me that’s the worst. My home is the one place I’m supposed to feel safe and honestly I don’t. Life feels so unpredictable right know like the floor could just drop away at anytime. That my friends is why I’ve not been painting. I do however have some new pieces I’ve been working on but nothing like the amount I used to paint. I miss the security that my old life had and I love the vitality my new life has I just don’t know how to make this new foundation solid, hopefully in time this ship will right its self otherwise I fear this will be the end. I’ve no strength left for major sudden change the PD has taken most of my day to day planning skills completely. Balance a checkbook or pay bills, follow through on just about anything takes an army of people to remind or make me get shit done. I’ve thought more about death and suicide in the last year than ever before in my life. That alone tells me I’m tired, bc suicide isn’t a thing I’m into but there are days when being awake, conscious or alive isn’t a thing I’m very into either but still each day I wake, try and smile lol PD joke and start my day. Anyhow it’s nice to write here again it feels like home more familiar than anything else right now (today). This next 18 month I’m going to be focusing on the Paint and the Book. For now I bid any and all a good day/night. Please remember the words you use today can and will determine the things that happen tomorrow.
Over and out.
I’m tired so fucking tired o being sick. Parkinson’s sucks. The medications for Parkinson’s sucks this whole mother fucking thing sucks ballz!!! I have to find a way to feel better in my head because I can not take much more of this. This life is crushing my will to live.
Just had my birthday 5/31 I had a lovely garden party on 5/30 spent some time with my son!!! Whom I didn’t expect to see that day so hurray for that, sadly though my actual birthday kind of stunk. Granted I did get to see my son again which is amazing the first time in a year that I’ve gotten to spend more that 4 hours with him. After that though it’s been down hill. Life just doesn’t fucking like me sometimes I think. I just want to be happy.
Somedays I’m not sure what to do…. Run,scream,cry or throw up.. When I have the small moments of what a “clear head” used to feel like and I look at what my life has become. In some respects I’ve been reborn and in others I’m living a nightmare that just won’t stop. I haven’t been painting much and not for lack o inspiration if anything to much. As Parkinson’s changes my senses I’m finding things of all kinds are effecting me differently than before. I’ve patience where before is none an none where before I’d plenty.
After M kicked me out I had to literally fight for my life. Depression had and has me by the balls, reeling from the PD and the emotional trauma of my separation self preservation mode kicked in. “Lost at 44” should be the title of my book. I never in my life would have imagined I’d be here in life ever…. Not after all I’ve been through just to get to even. TBC..
I’m struggling with my med head this this morning. My thoughts and emotions are seriously out if control lol. Not like “crazy” just squirreling and hyper acute. PD meds are like jet fuel, if you don’t get the mix just right it doesn’t perform the way it should. I’m in the middle of a huge cluster fuck of issues right now. Finically my separation and pending divorce mixed with my extremely limited resources and the fact I can work has pretty much ruined me. Currently I need to move by may, have very little funds to do so. Emotionally I’m tired, physically I’m Parkinson’s and artistically I feel dead. I’ve grown to despise Mike Tevis the owner of the Salem Arts building and once my lease is up I’m going to turn over all my documentation to the BBB,OSHA, the Secretary of State and anybody else I can get to listen to a story of a dishonest deal breaking businessman and a disabled painter. 😉 should be quite a year jerker. Anyhow I’m pissed, scared, tired and sore…. Guess not much has changed. Maybe I’ll paint maybe I’ll write, but right now I’ll sit, smoke cigarettes and drink coffee and possibly pretend that everything’s okay.nuff said,
Okay it’s official. I fucking hate this Christmas more than works could ever express. FUCK!!!!!!!!!!!! Nothing like spending the holidays ALONE!!!!! Fuck this!!!!
Sometimes I just don’t know….
12/02/2014 6:09pm pst
I’m surprised that its been a month since I last wrote here. Things have been going well on the “life” front. The Parkinson’s front not so much. My concentration has been for shit lately and my fatigue has been kicking my ass. So basically I squirrel around the house and get next to nothing done. But in many ways I’m more happy than I’ve been in years, I’m learning so much about myself and what it’s like to live, to truly love and love freely. Sure I’ve made some huge mistakes along the way, I’ve paid for my choices and I’m ready to move on with the life I’d like to end my days with.
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 😉 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.
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.
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…..
It’s hard for me to imagine that I’ve not written here in months, the things that have happened in my life over the past 2 months are some of the most heart breaking and amazing things I’ve ever done and felt. As I feel the Parkinson’s slowly chipping away at my cognition and my body. Today I feel lost inside my soul. No reason, nothing happened… Just life and all of it’s subtleties. Someday I’ll write about the pasted two months but I don’t think I’m ready.. Until I find my way back here.
7/27/14 5a pst
The pain in my heart is almost unbearable. There are time when I would gladly give all the paint and words back to just for once in my life not feel as deeply as I do. The joys, the pains, loss an heartache that rip through me like a hot knife. I feel these days more lost, hurt and alone than I have ever felt in my life. The Parkinson’s ribs me of my hopes and dreams as I some how manage to push those I love most away from me.
I’m not sure how much longer I can feel this way and continue to persist.
I let my heart be broken by a stranger, an angel that called my name, spoke my language an forgave te sins of my past and present. I loved her deeply as any name could. Then she set me free.
Now I’m left feeling just as broken as she before she left me. She took the good and kind things I had and built up her strength again so she could fly and I was stupid enough to think he would fly to me. A fool I was. Now I’m simple broken B~xx
Today was a good day my heart and head were happy and clear until the pain started to catch up to me. There are so many things I wish I could say here right now but I haven’t the words to express myself well enough. So many feelings and thoughts I could write for the rest of my life and never get them all out. So much passion and fear it boggles even my at which the depth our human heart and souls can feel. When I’m without my pain pills for to long I start writing more because I can’t bare to paint or sit/stand long enough to do so.
Enough sharing for now,
Wow how time flys when your having fun..(sarcasm) it’s funny for as positive as I try to stay sometimes I wonder if I’m just destined to be one of those crazy bitter old men. I’ll be littering around my studio, mumbling about failed relationships, the government and the high price of coffee…. I say this jokingly but truly I wonder. My Parkinson’s has been acting up a ton lately. I’ve been feeling sorry for myself in regard to my private life if I actually have one anymore lol. Rejected by my wife, feeling rejected by my lover. Overall feeling pretty fucking shitty about myself these days. Really if it wasn’t for my son living in Salem I would move away and hermit somewhere and just paint and bid this whole part of my life good bye!! See bitter old man is coming out
Though my PA is just about ready to start assuming a more active role in my life’s organizational areas which makes me happy and more comfortable in my living situation. She’s actually one of the only people I have in my life that I talk to everyday that makes me feel important, cared for and loved. I have a number of big artist things going on over the next few months so it’s going to be really nice to have the help. Any how it’s Sunday morning and my son is coming over for a while this afternoon. Hopefully I’ll feel well enough to go hang out and walk around for a while.
Over and out.
7/8/14 9:35 est
There comes a time in each of our lives when we must learn to let go. I’ve done so the hard way, not by choice but by pure design. Something many people don’t know is I continued to work for nearly a year after I was diagnosed with PD. My onset was hard and fast, honesty taking me by surprise. In hind site I’ve learned that I’d had the disease for a long time up to 7 years perviously before my outward symptoms began to show so once in medication it’s like the PD said “oh no you don’t” and really started to kick my ass hard. As a man who was raised by an older generation than my maternal parents I was taught the “old ways” that a man IS defined by his job and his actions as a provider and protector. True, real or not that was how I was raised so that’s who and what I became. Having Parkinson’s disease take away my identity a what I knew then to be my “self” was devastating not only for me but for my family. I can only imagine how hard it was for them to watch me struggle with the biggest thing besides death that we as a family unit had ver dealt with. In the end not then or I was able to see it through to the end. M and the family and I separated this last April.
Which leads me to the next major change in my life in a relatively short period of time. Losing ones other half.
I was always raise to put family first and in my process of self rediscovery we ( I ) somehow lost sight of that. Not so much out of greed or a need to be free, but out of an overwhelming need to figure out who and how I was going to live with this life changing disease. Sadly again in the course of learning who I was at the core of me, something that I had to find, I had to find something that PD couldn’t take from me. I lost everything I’d ever worked for in my life. Yet at the same time I found myself again. The poetish painter. Sure I still want to take over te world “pinky and the brain” but now I’ll do it by means of art and through my art and passion remind the world to feel. Remind the world that know matter what colour skin or language or financial status one has that when we take it all away that we are built from the same stuff. Love is love as is, hurt, anger, sadness, hope, fear and dreams. They are the fundamental things that make us human and consequently connected in a deeper way than skin or spoken or could ever express. Colour speaks me in ways I’ve doing it doesn’t everyone. I feel the colours so deeply at times they make me weep like a child and the funny thing is I’m blue/green colour blind.
So letting go through change I’ve found isn’t me. I will always hold into the hope that I can and will surround myself with the people that make me most happy. I will always hold onto the belief that we can heal past the hideous, monstrous things that can happen in a life time. I know because I’ve lived through a lot of them. So as life changes to you, around you and through you keep the gifts it gives you, toss out the garbage and always, always know that things will change and that you can and will make it through okay. Today I write these words for myself as much for anyone reading them as I’m right smack dab in the middle of the most difficult time I’ve ever had in my life. Living with a “incurable progressive neurological disorder”
Having lost my career, my family,support unit and home, having lost a very important person in my life that I thought would be around for much longer. But I have learned that at some point I’ve got to let go, I don’t know how but I’m learning. So keep the ones who love you close and tell them daily what they mean to you and the rest of them are just marks on the road map of life. Thanks for letting me ramble.
“A life in progress”
The uncertainty of my life has consumed me. So tired from the hurting an heartache. So tired from the unrequited want and desire. My body failed me today as I’ve slept all of it away in hope to gain the strength to smile for two more days. Three floors down both here and there looks like heaven. Or hell maybe both. What I wouldn’t give to not feel, just for a day. Sweet sweet sleep. Soon I’ll return home to another empty place full of broken dreams and unfulfilled desires. There I will do same cry and paint and hate and hurt. I will once again spill my heart and soul in Blues and greens I will hide for weeks in silence for the fear if the words I have to say. They haunt me. My life haunts me right now. Pushed from my families arms, pushed from all the arms I’ve reached for, unwanted unloved. Never good enough wallowing in self pity a broken heart and a bottle of vodka. No wonder the great minds of art died so young…. Humans are not made to bare such pain not made to consume such fire for a life time. For here and now I feel I’ve lost all, loved to hard and left to many times.
**yes I’ve been drinking tonight.
The pain of giving your heart to someone who goes it back is unbearable. Never again!!
There is an imbalance in my life that I’m unsure of how to handle. Wants and needs in this human life that I simply don’t know what to do with.
Pondering the next phase of my life what to do where to go, who to take with me and whom to let go. The world is big and I’m feeling very small.
On of the hardest lessons in my life has been learning to live in the moment. All my life since I was a little one has been spent dreaming of the next step, coming from a broken home and being passed about from aunt to grandparent an back again I spent a lot of time getting ready to leave. Then being a young boy and and starting work very young planning for the day, work, friends getting out of poverty. Always reaching for the next thing. To being an adult and running business planning “next step” kind of stuff. Leads me here…. Unable to just sit peacefully and enjoy, always painting and writing dreaming, it’s not a bad thing I think but it’s a huge revelation when you find yourself in a situation that you want to plan an prepare for but doing so will ruin the moment… It’s hard to find the balance. But for me know here today it’s the one thing I absolutely I must do.
There are times in our lives when we want more than we can receive from the world we live in. For me I believe that these are times of growth, self reflection and a true test I our convictions. Over the past few years my life has changed in ways I never imagined. Parkinson’s, the separation of my family, the success of my art. One of the biggest things that as I take a step back and look at that has been the most difficult to endure is the journey of the heart. Being one that feels deeply, this test has pushed me to grow in ways I’ve never wanted to and ways I never felt possible. My conviction to self growth solidified in the small hours of the morning as I weep alone in my bed, grieving for the losses I feel,, the hours of self exploration spent painting and simply being in touch with my heart and soul. The new friends I’ve made over the entire planet that provide loving kind words of support. Life, both hard as a diamond and fragile as a child’s first breath. Never ending circles~cycles of learning, loving and leaving. Until later then.
6/25:14 6:20p pst
Here I sit waiting for the first if two evening flights to Ottawa, sadly I think this will be my last travels for a while, the stress if life and Parkinson’s has taken it’s toll. My body and mind have grown tired. I’ve unintentionally driven most of the people I love most away from me in one way or another and I’m finding that my life even though worth living has become the one place I don’t want to be. So I’ll go to Ottawa pick up the things I’ve left behind give my thanks and return home. I have a huge show coming up in August and my sons birthday in July. So there is lots of painting to be done. Not to mention a slew of Dr appointments both big and little. I’ve reached the point where I need to have a PA and get some home healthcare assistance due to some organizational issues I’ve been having. Parkinson’s sucks pretty much. That’s it for today.
Not my most favorite day since my dad passed away and certainly not now that my wife and I have separated. Things in my life right now feel 100% up in the air and honestly that scares the living shit out of me. My medical insurance is all messed up. My personal life is completely fucked up and I’ve no plans for my future for the first time ever and I hate it. It feels like I’ve nothing to work for no goals. My dreams of family are lost and dreams of career are gone. Really really alone right now.
Waiting is not one of my strong suites. I’m tired again. Tired of thinking so much. I wish I could just turn off my mind and relax. Right now I’m feeling like the things I want in my life don’t want me as much as I want them and it’s a shitty feeling. I want to feel loved as much as I love but it seems that’s not an easy thing to find.
Ya know I try to give a shit, everyday. I wake up reach for my pills that help me move, the pills that get my thoughts from “the pain” ( Spock, Star Trek) to “normal life level but really when it all boils down I’m not sure I really do give a shit. I mean don’t get me wrong I probably care more about the faceless names less “you” reading this than I do myself. I give my heart and my art away. I pour my soul out for all to see and really for what!? I’m just a man amongst millions of other men. Painters and poets. Happy, unhappy wandering fools all of us are. my wife kicked me out bc she didn’t like the new me and my daughter hasn’t spoken to me in weeks. Who gives a shit that I paint and write pretty words. The next guy, will come along and make his mark ontop of mine and I’ll be gone.. Forgotten… Just like the countless millions before me. Yes I’ve had a drink or 4 tonight but really does it change the words… No… Maybe it just makes then easier to say. Broken needs broken so it feels better. Sad but true. Honestly if I didn’t have my son I’d be done with this game of life. I’ve had my kids, cats, dogs house on the hill. Fast car, good job… And all for what?? Nothing. Not a fucking thing. I’ll wake up tomorrow hung over and alone. Bored and I’ll paint.. Count the days till maybe just maybe I get to find a human that can love and nurture the mess I’ve become or not. Eventually Parkinson’s will take it’s hold wen more and I’ll die encased in this useless fucking shell of a human bag of borrowed bones I’ve become.
Anyhow that’s may drunken rant for the night. Fuck!!!!!!!
The pain in my right hip is reaching an unbearable level. It’s gotten to the point where even 6 Percocet a day don’t even cut the break through pain at all. It’s making waking around and sitting a whole new level of shitty. The unfortunate part is thanks to cover Oregon my insurance is so fucked up I can’t go to PT or wen to my specialist. It’s been almost two months since I’ve been to PT 😦 not only do I miss the people my body misses the exercise desperately. Between moving out of the farmhouse and the increase in rent and insurance costs I’m basically fucked. If I don’t sell art I don’t eat. I don’t live well and I suffer. Well that’s it for my pity party. Until next time.
I hate May…
Since I’ve been back things have not been good. I’ve been out of pain pills for a couple days and it make me very cranky. I also really don’t like my life here, I love my son, but I hate this new “single” life. I’ve done single lots in my life and it’s not any good. I’m told to be strong and self explore. Learn to love the new me…. I don’t want to die alone… I don’t want to not have a person to share the joys of this life with.
My Parkinson’s has been getting the best of me since I’ve been back, one of my biggest triggers is stress and for me being “home” is pretty much like living in a shit fire storm, with small moments of joy. So my body rebels. My mind becomes muddled and “normal” life as you know it become nearly impossible. Before my separation from M and the more serious symptom onset I put together a really good plan and regiment for myself, it kept me whole and safe. Now with this new world and this new me I’m more vulnerable than I’ve ever been in my life. Thoughts don’t come clearly, organization doesn’t really happen. To be honest I’m afraid and tired. Most of my life has been a struggle starting from the time I was a small child, when I was younger I had a goal a dream, I wanted a family, I wanted to paint and write. I wanted to travel. Now in this new life most of those things are gone. I can still paint though my hands have been dropping brushes and crapping up more than normal lately. My family is gone and travel has become more and more hard to do. The rush of travel keeps me sustained but the crashes when I come home are getting worse and worse. This is not the life I wanted… And I’m not sure what to do about it.
Over and out..
I’ve been in Ottawa for the past 10 days and I must say I haven’t slept this well in honestly I’m not sure how long. The feeling of being appreciated for the man I am the things I want in my life and the goals I have feels completely foreign to me, but sure could get use to it. My body has been less symptomatic my fatigue has been much less and I’ve been painting. Sadly today is my last day here until I return in late June. But I bring back with me the memories of what it feels like to be me again and that’s a feeling I will cherish for the rest of my life.
It’s been far longer than I expected since my last entry. If you haven’t been reading the blog then I won’t bore you with the details . It’s easiest to say life has changed a great deal since my last visit. My Parkinson’s has been progressing at what feels like a very steady pace. This fucking disease is killing me far faster than I ever thought. See it doesn’t just erase you like cancer OD slowly strips you of all the things you’ve become accustom to in your life. Arms swinging when walking. Having a “normal” gait.
Being able to plan more than three steps in advance.. Yeah… PD sucks.. Ass.
2:30 am and I’m up 😦
I come to this place to write about my life. My fears and dream a place to speak about pd openly. I have to admit I’m concerned about my pain levels again. Sharp deep pain and locking has started to happen. I’ve been experiencing more freezing and trouble in stagnation movements. The stiffness that already owns most of my body has started to fully engage my elbows, wrists and hands. I can’t let this fucking disease win, not yet it can’t take both my arms I have more to paint. Though I fear that my travels this year may be my last. My balance and leg strength is making it increasingly hard to move, walk,stand,sit etc. anyhow much love be brave be bold and thrive in your life. Truly we never know when our times will come.
When I paint the pain fades away. The reality of my condition fades into the background of my life and I’m free. Even if for a few moments in time I’m free of the uncertainty of my life with Parkinson’s disease. The never knowing if my arms and hands will work or if my legs will carry my body to take the next step. The fear that gets compounded by the cognitive changes all goes away. When I paint I’m free. Simply to express the love,joy pain and sorrow of this life as I see fit, when I paint I’m just me without all the baggage of this physical life.
** 1-10 scale 1=great 10=bad
1/19/14 3:35 pm pst
It’s been a funny day here around the house I woke up about 2:33 AM and painted in the studio for quite a while then I found about 10 AM that my fatigue level was really high. I managed to stay awake and functioning until about 1130 and then I took a nap until around 1pm. I’m not sure if it’s a PD thing but my whole body today has just been extremely extremely sore from the base of my neck basil ganglia area to the ankles, tips of my toes and fingers my muscle have had a great deal stiffness rigidity it has been has been pretty bad today. Oddly I haven’t been experiencing much dyskinesia or dystonic cramping.
Who knows Parkinson’s sucks and does stupid stuff that just leaves me speechless half the time.
1/9/14 4:am pst
One thing they don’t tell you when you get pd is that it’s going to hurt and it’s going to hurt a lot. Most ppl when thinking of Parkinson’s think of MJF and how he moves. Well that’s called dyskinesia and it’s a side effect of the medication. Parkinson’s disease actually is trying to do the opposite. It’s trying to cease all movement hence the medications to help grease the wheels. Stiffness and rigidity is the number one complaint from PWP of all ages and as you can imagine having stiff and hard to move muscles is uncomfortable enough when your not
moving around. Now imagine trying to live a “normal” life constantly reaching,kneeling, bending and twisting….. Yeah if you think about it for a while you start to understand, moving around with really stiff muscles hurts. Anyhow that’s my brief little chat about pd and my way today of saying I’m so tired of being in pain.
That’s all cheers.
1/5/2014 6:30p pst
It’s been a while since I’ve written here, I’m not really sure why. I guess I’ve been pretty busy for the past month or so. Some things I haven’t been talking about on my blog lately that I usually like to keep for this private area. My Parkinson’s has been doing what pd does and marching forward. One of the biggest reasons for my recent move is due to my mobility. I had a couple of falls at the old place and it had come time to face the fact that living in a house with stairs was more of hazard to my health than it was worth. I’ve been consistently loosing the feeling in my dermis it seems peripheral neuropathy has it’s own dangers. The day about 6 weeks ago I broke my ribs I had no idea until the next day. I simply didn’t have any of the normal signals going to my pain centers telling me I was hurting myself. Then again just a week ago as I was preparing my studio and I moved a table I have and re-injured them worse that they were prior 😦 I don’t mean to keep hurting my self but I’m not sure how to just do nothing. My joints have been getting stiffer and stiffer. My Bradykinesia has been getting more pronounced during my on / off periods and my docs say I’m on max carbidopa levodopa with out it causing extreme side effects. At this point I’m not sure really what to do. My pain levels are extreme with my ribs being hurt. 7-8 easy with 9-10 when I try to get up from a laying position. My leg strength has been getting worse as well as my balance. It seems this latest move took a fairly large toll on me physically. Funny thing though mentally I’m doing better than I’ve been in a while, my depression hasn’t been that bad sans a few days of feeling like an empty vessel. All in all I’ve never felt so broken in my life and if I’m honest with myself it’s pretty fucking scary. I’ve been freezing a lot lately meaning when I try to instigate movement my body/mind pauses so even if I want to take that step up my body doesn’t alway do it and I’ve also started to really have to think about my movement. Imagine having to think about making every move you make reaching,walking, bending, gripping. Anyhow that’s enough depressing crap for the night. My spirits are high. I’m going to keep painting and writing until the universe takes all of me from me then I’ll go. But I will not go gently into the night I will fight every fucking step of the way .
I should have never take that nap today. It was only 45mn but still it feels like it’s keeping me up. I feel asleep at 8:30 slept till 11:30. My everything hurts these days. Scale of 1-10 is a sold and constant 7 between my ribs which I keep re damaging and the ridiculous amount of stiffness I’ve been having. My dystonia has been pretty bad lately as well. Been in the new house 5 days and I think it will be pretty cool once it’s done. Going to try to nap.
I’ve been up about ever hour on the the hour since 1a pst my ribs are killing me the mix of pd and rib pain is like a cruel joke. The meds from the pd make me move ( dyskinesia ) the ribs seriously done want to move. The 6 Percocet I take a day for the muscular skeletal pain from pd doesn’t touch the rib thing and as great as my GP is he doesn’t get what break through pain is all about and how hard it is both physically and mentally to deal with. Any how I’m bored and wiggly it’s starting to feel like one long freakin day again, much love.
11/29/13 5a pst
This time of year is always pretty hard on me emotionally, it reminds me sadly of all the friends and family I’ve lost over the years. And yes I know there are a million positive ways I could think about the loss but simply it doesn’t change the fact that I feel that loss deep in my heart.
My body is pretty broken these days trying to get the farm house ready to live it, yet at the same time it’s a point of huge frustration for me. I just can’t physically do what needs to be done. And that makes me sad/mad and upset. I’m so tired of living in pain and being afraid.
I’ve been feeling very alone these days.
Anyhow daily stats:
Rib pain 7-8!!!!
Overall well being 7
** 1-10 scale low is good high is bad.
11/26/13 3:41a pst
Another rough night of ice packs, Percocet and heating pads. Sleep for an hour or so wake up shift be awake for 1/2 hr or so then sleep again over and over. Not sure if it’s a good thing but at least it’s moderately certain. I’m pretty sure I’ve dislocated one or more of my ribs on the right hand side. Yesterday morning I felt something “click” next to my spine then I moved my torso bc it felt odd and I felt something “click” on the front side. So being the dumb child that I am I sat and moved my torso in a way that caused it to duplicate the sensation a bunch just so I could know what I was feeling and sure enough it was one of my ribs moving around. I thought: hmmm these things are supposed to be attached right? It’s high enough up to not be my floating rib. So yeah I called the doctor and made an appointment for the 27th it was the soonest the could get me in to see my normal GP. Parkinson’s has been acting like pd slow, stiff, shaky and fatigue all the normal normal. My big concern these days is the rib(s) and getting the farm house ready. Any how that me, your shaky broken friend B.
Over and out.
My ribs still hurt more than I can express more than I care to express in polite circles. I’ve only been sleeping in short bits 2 hrs at a time max. The pain always wakes me. I hot make does on Percocet of which don’t even really begin to touch this pain. Ibuprofen and then a regiment of ice packs and heat take the pain from a 9 to a 7 that’s when I sleep at 7 then the pd kicks in and wakes me or the pain wakes me what ever it is it sucks.
Just woke in stage 8 pain pretty much freaking out my body can’t handle this new house remodel, I seriously feel like I hurt something really bad 😦 arrrrgh
There are no stars words or birds that can calm these shakes and quakes today. no heart to to meet or greet these broken bones or wanten moans in the night . just ships lost at sea you and me. Today is a hard day, I took yesterday off from the world at large and am paying for it dearly today. It was the first day since before I left for LA that ive had off completely and what I feared would happen happened. I stiffened up like a steel band. My pain level is clearly out of control even a strong dose of morphine and percocet have only brought it down to a 6-7 but that’s only when im perfectly still and how often have you know a person with PD to be perfectly still LOL not often thanks to the lovely side effects of L-Dopa. Anyhow im not here to complain because I’ve found that there is truly no point to it. I can’t change it and I’ll not willing to be on so many drugs that I don’t feel the pain because then I can’t function as a human, at least not the human i want to be. I’ll be heading to the Farm here shortly in hopes that the hard work will loosen up some of these pains.
Much love and Light to all.
It’s been a while since I’ve updated my journal, I guess life has been getting the
Best of me lately. I haven’t slept for more that 4-5 hr a night since I got back from LA. While there we walked everyday then spent evenings out. Creating a cycle of missing my meds and putting a great deal of pressure on the hips and back. I’ve been in stage 6-8 in my hips and trunk since my return home. Sadly we are in the process of remodeling a ranch style house which my mother in law acquired for us and her but since she flipped the big bill it feels like hers mostly. But hey really I’m not complaining it’s one level, I’ll have my own studio and it’s ours plus our mortgage will be far less than it is now.
Between all the hustle and bustle mixed with painting and cleaning my pain level has reached new heights 7-8 currently as a matter of fact it’s what woke me up out of bed at 1a any how one maybe two more days of painting then I can rest while the carpets and the flooring goes in
With any luck come the last week of November we can start moving things in.
Symptoms lately past 3-4 day
Mood has been pretty good 🙂
11/6/13 3am pst
I woke in a startled state promptly at 2a today. Pain levels steady at 5-6 waiting for the day to start for the rest of the world. Today I have all three therapies
OT, PT and Speech a regiment I’m not looking forward to at all. I have so much on my mind these day it just seems wasteful to spend 3 hrs focused only in myself. I’ve been having self esteem issues ever since a conversation I had a couple of weeks ago, kinda sucks. But lately honestly I just have to much going on. Between traveling to LA on the 8th to getting things ready for the move to the new house I’m feeling far to overwhelmed. Symptoms increase with stress and sadly besides a few fleeting moments of excitement stress is all I’ve been feeling lately. Hopefully LA will be a chance to decompress and get right in my head and heart but something tells me that’s not going to happen.
Pain 5-6 w/spikes 7-8
Over and out
11/1/13 12:34a pst
Just woke from a horrible dream 😦 I think it’s nerves surrounding the show. I hate bad dreams though they leave an engry all there own a little footprint of fear. My pain level is moderate right now stiffness is pretty sever which leafs me to think I was moving a lot in my sleep. Did I mention I hate bad dreams. I used to have night terrors as a child. I don’t think I’ve ever gotten over the fear those dreams left etching vivid scars in the landscape of my psyche. Anyhow no more talk of dreams, kittens yes fluffy cuddly kitten with dull claws I hate bad dreams especially waking up alone scary shit. Okay I have to write and not here.
10.27.13 1:30am pst
I’m not sure what worse laying here in bed wondering why I can’t sleep or wandering around the house because I can’t sleep. I’m afraid to go paint bc what if sleep comes and painting fuck!! Such a stupid double edged sword my pain pills take away the pain but keep me up. Soooo what the answer??? More pills yay sleeping pills or anxiety pills or some other fucking pill. I already take enough damn pills. And my studio is a mess trying to get ready for this November show grrrr. Good night
Yesterday and the day before I woke in some of the bigs pain I’ve HS in a long time. I’m not really sure why? I’ve been sleep in a nice firm surface, trying to be a good boy and take my pills on time. So who knows I guess it’s just one of the luxuries of pd I think it’s partially bc I move so much when I’m asleep or bc of dystonia cramps I know often I’ll wake up in the night and my arm or leg will be fully flexed like it’s trying to life some really heavy invisible weight. It’s kinda stupid actually. It’s like hello brain were supposed to be sleeping not lift fake billion pound objects. I guess it doesn’t help that there been a cold floating about the house for weeks now. I can’t take OTC cold meds and let’s be honest here, though I’m a huge advocate for natural remedies there’s huge difference between night time cold medicine and mint tea .
Okay on to today’s update my raging migraine from yesterday is calm but sitting right at the base of my basil ganglia just waiting for me to do something stupid. My tremors this morning are nominal but my stiffness and joint pain is ridiculous 8-9 level I can feel the tendons in my hips,shoulders,ankles elbows and knees as clearly as if they were pieces of Steele laying over the tops of my skin. The muscles in between each point feel weak and stiff. I keep re injuring my stupid right knee. About 1 month ago I “feel” in the kitchen really it was more like my body decided to go one way and my right leg said NO and I twisted my knee really bad. Well that same thing has been happening over and over.. Stupid leg !!!
Okay right hand/ elbow cramping to the point of non functioning status so this little blog entry is done, yep still have pd and yep it still sucks.
10/16/13 3:30am pst
I’ve been up since 2a I can’t say I haven’t been sleeping , let’s just say I haven’t been sleeping when you do. Usually only 3-4 hrs a night last night it was pretty good, for me that is I slept from 10p-2a and the sleep was fairly deep, medicated , but deep none the less. My paint level this morning has been pretty well in check given that yesterday evening I’d been having dystonia cramps in my back /shoulders that made it impossible to do anything except lay down and try to breath through the pain. Keep in mind that’s a pain level 7-8 while being on 5 Percocet throughout the day. I can’t even imagine how much it would have hurt if I hadn’t been keeping my pain meds level through the day. It’s been the strangest experience watching my body crumple up like a can in a pressure chamber. For me it going in fits and bursts or so it seems. Lately I’ve been having more trouble than normal with my triceps my friend put it perfectly my left arm keeps curling up like a little T~Rex arm. The tricep and tendon have been constricting so much it’s wild. A bit to painful though. Anyhow my “off” time tremors have been getting markably worse as well as my balance. If I walk into a dark room or during eyes closed exercises I dramatically lose my balance. Leg drag, arm swing all still off per usual
Hip, back and spine stiff, rigid as normal
Okay that’s all for now
Slept in a guest bedroom at a friends last night. Woke at 4a to take my pills then promptly fell back asleep. Currently at a pain level of 7 in my hips,shoulders and spine. Trunk rotation is limited to basically facing forward unless I choose to turn causing a great deal of pain. My sciatic pain in my hips and left leg is huge I can feel it all the way down to my toes
Pain: 6-7 overall
**1-10 scale 1=good 10=bad
10.6.13 3:50a pst
I woke in stage 7-8 pain this morning
Found my cane and started the trek
Up the two flights of stairs to the coffee pot and pills in hopes of starting the day.
My right knee is still injured from my fall two weeks ago and today my sciatic pain is acute from my left hip to the tip of my big toe. Neck and shoulder cramps seem to be taking the day off only slight pain 5-6 on the left side. My tremor is nominal so far this morning meaning I haven’t spilled my coffee and cursed like a sailor..yet..! Bit hey I’ve only been up for 15 min. I start my day with 60mg of cymbalta taken for my neuropathic pain funny thing is it’s also for depression and when I first started taking it I was so pissed because I didn’t want anybody messing with my brain chems…..See how ironic that is….?..anyone…Bueller… Ahh here comes the pain been up for twenty minutes and now that my body and mind have finally joined the same team it says wtf did you get the number of that truck.. 4:05am pst time for meds ttyl.
Everyday I wake up more stiff than most professional athletes will ever feel in there lives. From there I begin a regiment of medication that even the medical professionals agree carry side effects that are borderline worse than the disease it self. I sleep if I’m really lucky 5 hours a day usually about 2-3 at night and 1-2 during the day. I’m not sure if my progression has been fast or slow as finding someone with YOPD my age is next to impossible. I was officially DX in 11/4/11 then received my second DX in January of 2012. I had been seeing doctors since December of 2010 trying to figure out what the hell was going on with my body and in hind sight after doing the research I’ve been showing symptoms since around 2001-2, any how that’s the new me mixed with the old me creating what I’ve had to evolve into as I try to come to peace with this disease and it’s mental and physical changes.