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I sit here and think of how to start this page, words of wisdom, thoughts of deep intellect or emotional dribble… I think in sticking with the title I’ll talk about the journey, you may ask what journey? To the store… To the moon… Or maybe to the places inside our souls where we all must go eventually to decide on who or what we are going to be and or do as humans on this planet. Everyone should at least once I their life take this trip and find who they are and how they will choose to be. I openly embrace and fear change with all my being. It is the one thing besides death that scares the heck out of me. On the plus side when things are not
great, well it’s going to change but on the other when things are great unfortunately this will change as well. I have a very zen mentality on how I let things effect me, very simply they are what they are. I don’t get to excited nor to upset about much of anything, not to say I don’t feel very passionately about many things, but really….With so much going on in our world today how much stress does one really need from the white noise of the universe. Example: As my wife and I sit in OHSU waiting for my neurologist to come back in the room the mood is tense, like Georgia heat, thick and consuming, my wife is stressed. The doctor comes in and gives us the news, “Ben, you have Parkinson’s disease.” My wife begins to cry and the lead nurse and I comfort her. I think to myself hmm PD that’s strange oh well.. I wonder what we should have for dinner. I can’t change that my brain no longer creates enough dopamine to get my electrical signals from point a to b. So really, freaking out gets me nowhere but hot and sweaty upset and tired. So we head home and I make roasted garlic chicken with Alfredo sauce over angel hair pasta with a nice rubbed garlic crustini, (all hand made)have a beer and thank the world for giving me the strength to take my next breath, for the sound of the ocean and the gift of life. Anyhow enough for today….. The journey: to be
The stillness of the morning is almost oppressive, my body sits rigid and sore from the nights restlessness. I ponder how I’m going to be me today, finding the strength to not give up, to be strong in the face of tremors that make it hard to type or drink my coffee a shuffling old man at 42. Waiting for my muse to guide me from this dark place in my head I’m reminded that I still can walk, hug, spell my name and recognize the faces of my children. These are the things that give me strength as I stretch my ratcheting shoulder. This is one of those journeys that reminds me that things change. In an hour I’ll take my pills and my body will loosen up, my demons will fall at bay and I will take a deep breath and face the day with kindness and passion. For those of you who take the time to share this journey with me thank you, until next time Be brave, live, love and thrive…..,,, to be continued….
4:25 am pst
Someone once asked to describe what it’s like to have Parkinson’s disease and I wasn’t really sure what to say, I mean how do you describe the feeling of being told you have an incurable progressive neurological disorder,…? Well I’ve been thinking about it and it’s kind of like jumping into a really cold body of water (physically) the uncontrollable shakes, as the cold water takes control of your body and all your muscles tighten with an unforgiving, unyielding strength as the rigidity sets in and your muscles start to tighten and shake, struggling to move just to stay afloat or as you pull yourself from the waters icy grip the slowness you feel from the cold as it starts to release you from its clenches, that feeling of; if I cold just get my hands to unclench I could start to move again, well… In a highly dramatic way that’s pretty much it. Some mornings I wake around 3 am and wait for my body to decide its going to let me get out of bed, waiting and hoping that the cold water will warm just enough to get my feet to the ground because I’m sure that if my feet touch the ground that my heart will take me through the rest of the day. It’s my Friday in the working world which for me is a wonderful thing, not because of the day off thing but because tomorrow is my PT and occupational and speech therapies. For me it’s like a holiday every week 3 hrs of nothing but fighting off this demon. 3 hrs of nothing but some of the best, most kind and generous people I know. Well, enough for this morning. Time for pills, shower coffee, blah, blah…… For anyone reading this you may or not know me as a person but, I believe in you..!I hope you wake everyday with the strength and passion to do the right thing, be proud of who you are, be patient with the world it’s younger than you know. To all: Be brave, Be bold and love someone.Until next time……..
4:30 am pst
I’ve been up since about 2:30 am one of the fun and by fun I mean super crappy things of Parkinson’s disease. Today unlike the other six days of the week is a great day, I have PT-OT-Spch therapies today. So no matter how much pain I’m in which is tons today by the end of my three hour session I’ll feel like a normal person if only for an hour or two
It’s always a great thing. So the journey today begins for me in a great place a day off from work three hours focused on nothing but my well being and hopefully the rest of the day spent in my studio. Today I chase the demons away from my mind, my body and my soul. To all who read this I hope the world is kind and generous to you today. As always be brave,strong and have faith in your self. To be continued…….
2:53 am pst
It’s days like today I find it very hard to find my calm, sometimes it’s seems like the universe really wants to see how much I can handle. I mean really it’s 2:30 in the morning I should be a sleep. Days like today I have to dig deep to find my balance, accepting the day for what it is and greet it with open arms. The city is still a buzz with the revelers from last night, the restaurant workers and early morning delivery people.it’s funny how each city has a pulse and rhythm unique to its own. I had PT yesterday an for a few shining moments I could move my left arm well, I walked with a straight back. My feet didn’t shuffle and besides my cane I felt almost well. Sadly those effects slowly wear off and my body grinds back to a halt. Part of the reason I woke this morning is due to my muscle spasms, jerky limbs. Or as my muscles begin to tighten it becomes increasingly uncomfortable to be I one position so consequently I shift my self out of sleep. So my journey begins, I thank the world for the breath I have, the gift of life and love. I look forward to the day for what it brings and greet it with open arms. I go to that quiet place in my soul that says everything is ok, I take a deep breath and believe it, embrace it. Some days in my life and faith, I have to take minute by minute and hour by hour, but ya know I’ll take it. I’m heading down to my studio to begin today’s journey into my soul, for those of you who read this know I’m thankful for my life and all the things in it, it’s funny when you wake up one day and find a counter over your head how it changes your life and perspective on things.. So to all of you be thankful for what you have and I would challenge everyone who reads this do one nice thing for another human today be it open a door, give a honest smile to a stranger, or help a friend in need. I strongly believe that if every one did one nice thing everyday our world would slowly regain some of the compassion and patients it so desperately needs. To all… Be brave have hope and be kind…….
8:00 am PST
Within the existence of man how is it that we have become so lost from each other? How is it that we have become such an un-trusting unfriendly species. I look around the city’s streets of our world and wondered what is it that we can do as a people to change and embrace the humans that we are and change what has become of our race.
Today was a good day, and for those of you who don’t know what a good for me is I’ll make it brief: Pain level 5-6 moderate to severe dyskinesia and hand and foot tremor, followed by a couple of hours dystonia in my feet. Don’t get me wrong I’m not complaining at all that’s why this entry starts it was a good day. I spent almost all day in the studio. 2:30 am till about 2:00 pm I posted two new pieces on this page today and have a third almost done. When my soul is in harmony in the studio all my PD symptoms are less accept the pain. More to come a different day……. As always Be brave… Live and love…
4:30 am PST
Another day begins as I search the stars and my heart for the strength to take that first step, slowly my muscles relax the death grip they fought with as I sleep and give way to my waking soul. Today will be full of adventures some of the body and some of the mind, First day of four back at work I always dread day one it feels like walking into an alien landscape for the first time, that’s the funny thing about getting to take fourteen pills a day just so your body can move they tend to cloud the head even in place I know like the back of my hand. Slowly things will come into focus as my cognition regains control and I will far the day with an open heart, mind and the patients of an old cypress. Today is a funny day for me I feel small and very inside, what I would most enjoy is another day in the studio maybe tonight if I have the strength. Until then Be brave, never give up, live and love……
2:50 pm pst
It’s strange as I dive head and long into my craft as a stop to see the world as a “normal” person may. The world for me is a mass of texture and shapes of soft and hard lines. A mix of hard and light pallets. As I stare at my my back yard in heavy neglect, I no longer see the leaves that need to be raked as I see a mass of texture and form, folds of gentle hues perfectly balanced as only nature can produce, any how since I’m not a poetic genius I’ll leave the rest to the writers of the world. Art is grand!!!
Another morning of trying to convince my body to release itself from the grips of sleep. Sleep…. An old friend I don’t see very often, although last night I managed to get about 5 hrs. 2 more days of work then I’m off for 3 days. The morning is strange today the house is quiet just me and the cat wondering the halls as everyone sleeps, outside the chill of the morning keeps the summer heat at bay making it calm and soothing. All I really want to do is paint today my body is stiff feels like I ran a marathon last night. Some days it’s hard to find my calm in a sea of twisting muscles, I try to always keep a smile on my face and a welcoming heart, but today is hard. Today the emotions of walking the plank have my soul in turmoil, the fear and uncertainness of my diagnosis have me in their grips and I shy from them as a child does to it’s first fears. I wish the world love, today for my family and the people who believe in I will be Brave, live and love as I so often challenge the world to do, for today I am that small child full of apprehension of what the day will bring.
I am finding it so hard to find my inner peace today my everything hurts. Searching for that spot in my inner space that keeps the pain away. I don’t take pain pills for my condition so things get a little intense some times.
July 23, 2012 5 AM Pacific standard time.
Today’s adventures in my journey are going to be dictated over my phone as my hands are you working correctly today. For those of you who saw my most recent post anguish that piece is an interesting piece it started out as a very bright and sunshiny piece when it was originally created and through the process of my emotions and changing mood the piece ended up being a direct reflection of the pain and frustration as a human with Parkinson’s that I was feeling. Oddly enough after yesterdays adventures in never finding my Zen never finding my peace in my heart and creating “Anguish” I was able to chase that demon from my soul put him on canvas and lock him in key today I find strength within myself harmony within my soul the gift of life today is what will take me further into the journeys of my day. Sometimes I believe well excuse me I always believe that the hardest thing to do is find acceptance in the way that things are being able to toss away all of the white noise of the universe and take a small quiet step into one soul to reflect gently on the things that we are only as us in our quietest most silent moments within ourselves seeing deeply into our past and present. Until later today to all of you who may or may not read this be brave be patient live and love
7/24/12 8:am PST
Hope and anticipation:
I had a meeting with a gallery owner this morning who I thought wanted to show my work, yay, buys really he was looking for artistic investors to keep his gallery a float. It’s such a contradictory feeling to want to show your art yet the feeling of buying into an artists co-op just leaves a bad taste in my mouth , sure on one had the space was nice with a great location in a very visible historic building down town. But paying to show my art just doesn’t feel right. But a place to hang and sell anytime and anything is attractive, with a zero percent gallery commission is nice as well. Just not sure what direction I want to go with this…? Anybody have any feelings on the matter…?
So another day begins as I force my body to release its grip on its self. My feet find comfort in the floor a solid stable surface from which my toes do their dance. Today will be good it’s PT day 3 hrs of force stretching and conversation to stimulate my mind, I also of three more pieces ready to finish painting. After yesterday’s misadventures with the gallery I’m ready to clean my studio and start the process again. Hands are getting to shaky to continue so until later. Be brave live well and love..
7/25/12 7:27am pst
It’s funny how cleaning the house or working in the garden gives some people a great sense of clarity, visual clutter and such, I feel the same way about my studio, just rearranged my studio in preparation for a great day, after pt I’ll come home, have my usual snack of dried fruit, which I eat often. Mostly apricots, dates and pineapples, yum!! Change into my painting stuff as to not ruin every piece of clothing I own. Turn on my music, which ranges from old jazz to modern pop and everything in between and gently slide into that space between what’s in front of me and what’s deep inside.A place in the universe where I’m not broken or in pain, where my hands don’t shake and if they are I don’t care, the place in our memories of sea breezes and sandy toes, cozy fires and warm embraces.
Until later….. Live well….
10:30 pm very late for me usually my meds knock me out around 8-9, but the paintings called to me I’m working on a set one is called strength, something we all need in one form or another. The other is balance, another thing we all seek to find. Thanks for listening, Be brave.. Live well and thrive.. Until net time..
Today’s journey takes me to many places, thanks to these fabulous meds for PD I’m lost in my own head today, searching forever for that little door that lets me express myself without bitterness and anger. I did however complete 2 of the 3 pieces I had hoped to and the 3rd is currently eluding me, sometimes I think I just have to wait for the piece to tell what it needs. I have a show in 5 days and it always makes me panic a bit. Aug 1st-5th after gallery commissions and such I’m going to donate the funds towards the OHSU Parkinson’s foundation, assuming I sell anything. We’ll see, its a good cause and worse case maybe I can help raise awareness of the incurable disease. As always be brave, live well and thrive..
9:30 pm pst
So the curtain of my day draws to a close, I finally over came the mood that ate Tokyo who knew all I needed was fresh peaches and vanilla bean I’ve cream. But seriously today was challenging on so many levels. The universe really did not want me to do what I wanted to do at every turn. Even had to call tech just to check my email. Grrrrrr.. Anyway I digress, peaches, I’ll just stay with the peaches. To all of you, thank you for sharing in my adventure. Until next time, live.. Love … And be Brave…..
Good day to all, I’m at work after four days off, shaking and twitching my way through the day so far it’s been an adventure, the usual dropping stuff and trying to remember what I’m doing, they(people who know me) say I should apply for ssi and ssdi and stop working but working on a professional level is all I know. 25 years of managing multi million-billion dollar business, without the small amount of time instill put in then I feel like a lose a small part of who I am… I don’t know maybe it’s time to let go of who I thought I was and get real about what I’ve become( thanks to the stupid PD). I’ve always had the white knight complexes as my wife says, I have a need to fix everything for everyone, save the day kind of guy. Unfortunately my brain still wants to solve the worlds issues but my body says no more…. I spent my while life trying to be very zen about what I can and can not do always striving to do more both personally and professionally and now it’s even worse since I feel like I have this counter over my head just ticking away the days as my body and mind slow decay, it’s pretty scary stuff. Even on my best day when I’m totally accepting of my situation it till scares the hell out of me. Anyhow to all that read this or don’t may the world be kind, forgiving and generous to you today. Be brave…. Live and love…. Until next time……
As the tendrils of the night slowly release me from my slumber I am quickly reminded of what I’ve become, the shakes quickly engage my hand is if to say wake up good to see you, like a thousand tiny greeting all happening at once. As my feet find their way to the floor my muscles begin to stiffen as if caught in some unseen tracker beam from an old doctor who episode, slowly I shuffle down the hall as an old man may on his way to greet the day. Time goes by an I have arrived, the kitchen!!
The place where all the magic lives contained in the tiny capsules I now depend on for life. I reach for the cabinet mean while still receiving a thousand tiny hand shakes a second, at last ” papas little helpers” 1,2,3 then swallow and slowly the old man retreats to his inner space just hovering beneath the surface waiting for his time to strike, but for the moment I’m free. Welcome to my morning, I’m off to work, then home for a bit of press release work and then off to the gallery, I hang 6 pieces tonight for a 5 day show in honor of PWP YOPD to be exact. Be well, much love.. Until next time…..
I apologize for my recent decent into what seems to be a rather dark place, but things have been very challenging this days, partially due to the PD and partially due to the meds. I have been so locked inside my head these last few days it’s amazing, in a bad way. But interesting as an experience. I’ve been finding it harder and hard lately to keep focused, kind of like walking into a room 400 times a day and forgetting why your there. It’s really frustrating, especially considering I’m still working managing a very fast paced multi faceted retail business. It’s a very strange thing to watch as ones cognitive functions slip away, and rather scary has heck. I woke up this morning in a panic for a split second I had no idea what was going on, what day it was, where I was, what I was supposed to be doing, thankfully it passed quickly but that lingering feeling like a bad dream that stays with you all day still remains. Sad part is I have so much to be thankful for, amazing children, wife, friends and family. And it breaks my heart to see the fear in their eyes as my condition gets worse. For so many years I was and have been the strong, patient, wise father and husband. Life has such a strange way of changing for the unexpected. To all, love the ones you have while you can, say to them daily how much you appreciate and cherish them. Be brave, live well. Until next time…Benjamin
Today may have started in a small dark place but it ends with a dish of hand made drk chocolate custard a few calming hours in the studio and the knowledge that tomorrow I spend the day with my neurologist at OHSU. I pray that the good doc can help me see may way out of these clouds. Be brave…. Live well.. And love someone if not yourself.
It seems a strange time to be say hello and good night all at the same time, but that’s just it. My journey over the past few days has made me a tried boy, I had my OHSU visit, still have PD…… It’s a joke.. I always have it in the back of my head that one of these times they’ll say oh Mr. Prewitt we are so sorry we were wrong here’s a huge check have a nice life.. Would be cool you must admit. But a lass I think it’s not going to happen. My gallery show for tonight got canceled of which I’m not going to speak about, I’m furious and would like to keep my tone civil tonight. But today as everyday was a gift. I can move, mind just not always when or as fast as I’d like but , I move, I love, breath and feel so therefore I am. Anyhow enough of my wanderings for this evening. Tonight I let the magic of modern medicine guide me head gently to the abyss.i pray to all the makers to guide me back another day as I may paint, hug my children and laugh once again.
To all, be well, learn to love and learn to forgive, if just for a moment to feel that kind of peace.
Until next time…..
As I begin to reflex on the actions of the day I’m reminded of fragile our existence is and how at the drop of a hat, a push of the breeze our lives can change, I was asked by my company to submit a second ada form due to my decreasing ability to manage a multi million dollar business. So once again I must dig deep and ask myself the hard questions free of ego and perceived self worth(professionally) can I continue to effectively do this and at what cost, emotionally and physically. If I was a wealthy man I would just be done but for me that is not an option. So I’m waiting to hear back from a disability lawyer and coordinating with my neurologist
And hoping each day I can do what’s needed. On the plus side I have the guy who makes my custom frame working hard on my next set of pieces and soon enough I’ll have more of my soul to share with the universe. Question: is it a giant pain in the rear to scroll down to read this page? If people do, let me know. Until next time, be brave, love and learn..
The stillness of the morning can be so captivating. I sit on my back deck each morning after coaxing my body from its chains, I sit drink my coffee take my meds and wait for the magic to start. Each day is like the warm embrace of a new friend, today is calm and gentle the faintest smell of moisture in the air, almost no breeze yet refreshingly cool. I ponder new ways to tackle my demons, today the stiffness monster has teamed up with captain slow to try to stop me in my tracks. The tightness from by left side is starting to breach my right, like a slow moving train wreck a year a ago it slowly hit my left hip, careened its way up to my shoulder and now has moved to my right shoulder. It’s a deep seeded stiffness that starts within the very center of the socket as if to say your mine …(mwah ha ha). Today I will find peace in my resolve, never give up!!! And the fact that I have 3 new pieces to bring into the world shortly. Studio time has been minimal this past week as my job has required an enormous amount of my attention and since all forms of focus from require a great deal of energy by the time I get home I’m done, time for food and sleep… Any how.. The morning grows long and I must re engage the day.. Today: do one small act of kindness, hold a door, start with a smile, show compassion and patience. If done the world will be a greater place directly because of your actions.. Are you ready for that kind of impact and responsibility?? Be brave… Live well and love… Until next time…..
It’s been a few since I’ve had anything to say life has been full of doctors and pills the past week. Although I do have to share a fantastic store about meeting someone, she’s considerably older than I, ex professor and current friend of the arts. But she also suffers from Parkinson’s disease as I. I have almost zero contact with anyone who shares my condition and it was such a tremendous moment for me. I was like a school kid in the face of a super hero. Just to be able for a few short minutes to be able to talk art and PD to someone made my heart sing. I hate this disease and everything about it but it brought a great joy to speak with someone who didn’t care that I wiggle like crazy. Anyhow I’ll have more paintings to post soon. I’m fighting with angels and demons currently it’s a big 36x 48 piece that needs time to evolve into its true form. To all: much love, be well and I hope the universe has been gentle with you.
Been up since about 3 am apparently my old friend sleep has better things to do today. He and I only meet occasionally these days. Like writers I believe painters go through moments for blank spaces, for me it’s about absorption or maybe finding a way to express the feeling I’m trying to portray in a visual manner. I’ve been fighting with this piece called Angels and Demons I’ll be damned I’d it won’t come out. So I think that piece will have to sit for a bit I have 3 other pieces in the works which I will unveil shortly, one you have seen a sneak peak already of “greed and envy” it’s part of a spherical series, circles or elliptical shapes for me often represent the ever changing but often repeating patterns of the universe and as humans we find ourselves caught up in the day to day repetition of life. Some of which is good, like the oceans never ending crest of waves gently caressing the shore yet at the same time slowly relentlessly eroding its surface so peaceful yet ever changing the landscape of our planet. Or the sun with its life giving heat and light but at the same time drying out forests and for some poisoning their skin. Enough for today. Be well my friends, laugh, love and be Brave….
Today I’m going to my favorite place in our area, the coast not the beach mind you for in this area there are no beaches as you may find in Italy or Florida more like the coast of Ireland, rocky and wonderful with little patches of sand to call home beautiful mountains and cliffs and green as far as the eye can see. The sea fills my heart with hope and peace, something as of late you may have noticed I don’t have much of. So I go to recharge my batteries. To give my soul a chance to reconnect to my heart and my head. I hope the world is kind to you all today, cherish the ones you love and forgive the ones you don’t. Free your hearts of anger and distrust wash clean the the worries of the world as I do today.. Live, love and Be Brave….
As I watch the morning unfold like the pages of an old book I’ve read a thousand times I search the horizon for the strength I need to survive the day. As today my legs can barely hold my weight and my hands shake like a flag in the breeze I pray I can do this today. It’s my first day back at work after three days off. My body seems to be rebelling against the idea. I hope the worlds kind to all of you today may you find peace in your heart and strength when you need it. Live, live and be brave..
So we meet again my fine friend, my calm and still morning, I woke today with a tremor that would make Tom cruise in ” cocktail” look like he was standing still. I like to think of it as my internal alarm clock. The one cruel joke is the stiffness and slowness comes with PD makes it hard to hit the snooze, my symptoms have breached the half way point and are now making there way down my right side, which is fine as long as they leave my painting arm alone. Somehow I do t think incurable neurological diseases give a crap about things like that. Lol. The morning here is wonderful today it’s cool and calm. We live just far enough out go have the comforts of life ( fast Internet) yet an we still have an abundance of wild life, it’s rather nice. Today I feel broken its such an interesting thing, my mind is clear and calm as my body is a wreck. I was explaining it to my speech therapist the other day. I’m a 42 year old man living in an 80 year old body with a heart of a child. I still daydream and think of things I’d like to do when I grow up. I still feel young most of the time when I look through my eyes, but when I look down or in the mirror I’m reminded of my grim reality, such a strange paradox being alive and chronically ill. Any how hands cramping to much to type. Live well, follow your dreams and be kind to one another.
4:39 am pst
It’s pitch black this morning. Summer is starting to wane into autumn here in the west coast of N. America. There is a still and quiet about our house that is calming and disturbing all at the same time. I a woke this morning to an angry body, that’s one of the advantages to having to take pills at regular times, no alarm clocks my body just starts yelling at me when I’m late. As I sit outside drinking my coffee and contemplating the day I’m amazed at how quiet it came be in a city some times. The only sound currently is me typing and a rustle of the raccoons. They are angry little beasts around here. Only because I’m up and invading their space. They chirp and I wait, over and over. I stay very still as the 30 ft cherry tree they are calling home is right above me and I’m sure that one fast motion would send them pouncing on my head. I have work today so I’m gathering my strength both mentally, physically and spiritually this morning. I’ll need it as yesterday was a mess. Dyskinesia and tremor abounded in my day. Which by itself is not that big of a deal but when you add in the fact that I have to be like that in front of hundreds of people everyday it gets a little oppressive. Anyhow, today… Work…. Then finally studio time!!!! I have to balance things rather delicately sometimes otherwise my wife acts like she married a crazy hermit painter, whom she never see’s.
Anyhow enough of my non essential babble I wish all of you well. Be kind to each other. For there may come a day when you need kindness as well.
As I sit and wait for the world to slow stride from its slumber I search the sky’s for my zen, my old friend sleep did not visit of long last night. I awoke this day at 3:30am to a body full of tightness, relentless and never ending is the grasp of this torment. As I have mentioned before go find the coldest lake or stream you have and jump in, stay as long as you can thats the closest explanation to what my mornings are like. I’m not complaining just explaining. But it does lend it self to a wondrous journey of the heart, mind and soul.
Dear old friend I see you’ve come again
To that place that I see but dare not to be.
Oh cavernous so deep, for hearts make me weep and the sound of echos do sleep.
A mirror, so dear, does your voice come around and call to my broke heart wings.
Take flight from this place for your soul it will take and your child will play no more.
For broke heart,home, we can’t be alone, in a place that angels doth fear.
I’m done thanks for letting my mind wonder, please keep in mind I’m not a writer, but a painter thoughts come to me in waves and some times I giant long strings so that’s how I tend to think/write. Be well, live, love and until next time. May you find peace in your soul.
Today I write to you as I often do in a state of unrest. I woke this morning around 1:00am in the worst pain I’ve been in years. Imagine having sharpened steel rods shoved through both your hips, shoulders and down you spine functionally forming a capital I. Not fun. As I laid in bed in disbelieve. I thought to myself is this the end is my body giving up.? Succumbing to this disease that plagues my body and mind? I can feel the heat from my wife as she lay next to me and I start to think of the past, the birth of my children, the death of most of my friends, warm summer breezes and sunsets at the coast. And I’m reminded, how dare you give up. As the tears of pain roll down my cheeks silently in the wee hours of the night, I beg my legs to move,” just touch the floor” if I can just please god touch the floor I can get up. After about half hour of this madness I’ve done it, first one the another finally!!!! The ground!!! As the strength of gravity works and holds my feet to the earth I draw from her strength and let the life force flow through my rigid form. Three deep breaths 1..2..3.. And I stand.. With firm grasp to bed and wardrobe I make way to the magic medicine and wait. Oh sweet relief, still a shocking amount of pain but at least I can move….. Thanks for letting me share, life goes on. Laundry, coffee, therapies today for three hours. And then if I’m lucky about an hour of feeling semi “normal”. So now I must go paint before my body revolts, to all of you. Be thankful for what you have, forget not the little things and by this I mean little. The ability to button your shirt without help, or pulling your coat on all by yourself. Life is grand, fill your hearts with love and smiles. I’m thankful everyday just to have what I have. Be brave, love, and never stop learning.
Back from my adventures, unfortunately my body is destroyed. Tremor and bradykinsia has it’s evil claws deep within me. Both of my hips and shoulders have tightened to the point of near immobility, all because I’m obstinate and feel I need to prove I can still be a successful business man. And keep up with the big boys. Thankfully I have the next four days off two to heal and two to paint. I hope the world treats all of you well today. Much love.
9/3/12 4:30 am pst
The morning is still today no birds, no bats, Raccoons or cats. Just me and my old friend pain. My body keeps seizing up since my return from business. From my toes I my neck my muscles and tendons are relentless in their mission to crush my bones. Last night as I lay in bed praying for the pain to stop waves of fever washed over me, first the heat then the chills over and over again, every turn I made to escape this torture enticed my body to squeeze a little harder. Today as I write my hands tremble like a school boy on his first date, my feet gripped with dystonia making my toes reach for the sky. All I want to do is paint but I’m not even sure I can make it to the studio 2 floors down( note to self, next house one level) or find a cure for Parkinson’s , HA maybe both would be nice. Sorry to ramble so, but it takes my mind off the fact that when I move it sounds like bubble wrap, pop, snap, crunch and crackle. Enough I can’t escape this madness, best wishes to you all, may life be kind an grant your dreams, may your hearts be full love, be brave for today I am not.
9/6/12 4:40 am pst
This morning started abruptly with a seizing cough from the depth of hell it self. Ever since I returned from TX I’ve had this horrible chest cold. I literally have been coughing so hard my small floating ribs are sore to the touch. The thing that makes this experience hard is I’m on so many different meds for my PD that I can’t take any good cold medicine. My body has yet to recover from my adventures afar. Bradykinsia has been plaguing me for a week as well as some of the worst tremors I’ve had ever, sadly my Neuro was just like hang in their you’ll stabilize, HA, I say to that. Sure is easy to say when your not the who’s muscles are constricting so hard you can hear your bones snap,crackle and pop each time you move, remember I’m only 42 just turned in may. A year ago I could work a 60 hr week, lift 200 kilos and run a mile, now.. Not so much. Ok enough of my whining so to be so mellow dramatic. I’m finding it hard to find my happy place today, pain has a funny way of doing that. I don’t take any pain meds, just meditation, stretching and parki meds. Ok enough from me, I hope the world grants you patients, peace and happiness in your heart and soul. Be brave. Much love.
So I went back to work couple of days ago after being off for about two weeks. I was in TX for one week and at home recovering for the next. Apparently one week was not enough recovery time. When I was in TX it was 6a breakfast and meeting until 8p days full of physical movement lots of up and down and sitting the walking. All things I’m not very good at doing any more. I thought a week off afterwards would get things settled but I was wrong. My body is destroyed every inch of my is racked with pain. My job unfortunately has me bending and kneeling all day long. Not things I’m very good at as well. So consequently until I can get readjusted to work my days are full of pain level 6-7,8 and sleep. Makes my wife pissed she hates the fact that PD interferes with our life, I don’t blame her. It’s not exactly what she signed up for. Old me strong, charming young exec, ready to take on the world. So far she’s still around 15 yrs of marriage. I’ve developed a cough that’s so strong I managed to crack one of my ribs, kinda sucks, makes working that much harder. Any how enough whining. I hope the world treats you well, Be brave, be bold and thrive.
9/15/12 4:45 pst
It’s been a while since my last update, for that I apologize. Life has been well.., life full of ups and downs. It town 2 weeks for my body to recover from my trip to TX, most likely will have been my last. I just can’t do fourteen hr days anymore. Work has been challenging the stress make all of my PD symptoms worse even the small ones turn into big symptoms. But as I am not super rich nor old enough to retire working is my only option. Kinda sad really to broken to work fun time but not clinically broken enough to not work so unless I become a world famous painter “ha ha” working is what I’ll do until I can’t work anymore. Dyskinesia and stiffness have been a real issue as of late, depression keeps rearing its ugly head but I fight back with great resolve against them all. Everybody is worried about me which sucks, I can see it in their eyes but nobody has the words to say anything, except me and then I feel like I’m complaining ( which I really don’t do that much) to me their is a big difference between talking about how I feel and complaining about how I feel. Sometimes I just feel better talking about how my arm won’t move or “wow” my hands sure are shaky today, for me just another day. Any how painting has been convening in spurts. Working causes me a great deal of physical pain so in my work week f,s,s,m I don’t paint, I work come home make dinner for everybody and then sleep. I really wish a could just paint I feel like I’m on the edge of some amazing stuff, but just don’t have the energy to make it happen. Anyhow to anyone who makes it all the way down to the bottom o this page to read this thank you, sorry no amazing poetry or paintings today just the ramblings of some guy with YOPD. To all much love I hope the world has been gentle with you and remember be kind, be brave and thrive in your life it will be over before you know it.
9/15/12 500am pst
Slowly the fingers that grip my body release, eventually giving way to the 4 pills and two cups of coffee I’ve had for breakfast. Each morning I’m vexed with the challenge on how to face the day. My head says I’m awake lets do this while my body laughs and mocks me. My heart saddens with the conflict. Each day I think of the words I send to you Be Brave, Be strong… I know better than some how hard that can be at times. My body this morning riddled with pain, stiff and slow like an old man waking from a long winters nap. My ribs ache from the cough, cracked and bruised and shaking like leaves in the wind, but I have no choice but to go on, that my friends is the hardest thing, with a house and two kids, one in middle school and another in secondary I’m still the provider, of hugs and support, money and food. So each day I fight off my demons and try with all my soul to begin again each day. I have a blank white board that says one phrase ” keep moving forward” these days I’m trying to just keep moving, forward doesn’t even seem like an option, one breath, one step at a time. Ok well that’s it I’ve whined enough today time to put on my big boy pants and go to work. I hope the world is kind to you all today and that you are kind to it.
Sleep who needs sleep…. I do!!! Woke this morning at 3:00 ribs in so much pain who knew cracked ribs would hurt so much. I find myself in the studio putting the finishing touched on “savannah” and working on the frame for “into the abyss” as well as working on a new piece. Frames I tell ya no fun. I hand make all my own frames, from the cutting and gluing and stapling to the sanding and painting. Boring, boring, boring. The finished result is always cool, but as I’m readying the frames all I can think about is my next piece it makes me very anxious. Plus today being my day off my body hurts like crazy, my 5 am pills seemed to have no effect on my stiffness today so I wait till 8:30-9 for my next set and hope they kick in. That’s this morning update. Hope all are well, enjoy life, sing out loud, dance in the rain and love someone.
9/17/12 450 am pst
I really have only one quote for the morning that sums up who I feel, I have all of these words in my he but can’t type fast enough to get them out and since I have almost no short term memory let once they are gone well there gone just echoes of feelings I once had. So here goes the quote that sums up how I feel today.
” Yesterday,… All my troubles seemed so far away”….
Beatles. I think most of you know the rest if not you should listen to the song.
To all, be well, live, love and may you be free of pain and sorrow.
9/19/12 4/am pst
Again the morning has come to chase away the night, sleep slowly drips from from my eyes as the pain settles in. I lay in bed almost in amazement at the sensation. Body stiff and hands shaking I laugh to myself, as to not wake my sleeping beauty. One slow foot then another reaches for the floor. Success both on the ground then comes more pain as my hips refuse to bare the strain of my shell.. Coffee is all I can think down the hall and to the right sweet coffee to wake these bones. The morning is cold here, silent and chilled, no birds no bats no bugs all sleeping gently in their home today for they no the cold has come. Time for pills, 1,2,3 swallow and wait…. Today is going to be a busy day, nots of driving, not fun.. Then doctors upon doctor today. As If by some miracle of fate I’m fixed, they could rejoice and buy another car or play some golf”food job ole chap, you cured another” ##€£|#, stupid doctors. Today I get to play with my heart, not the poet painterly one but the beating bleeding broken one in my chest. To does however have one redeeming quality. I’m off from work for two days. Which means PAINTING, that is assuming after my docs get done with me I can still move. Ok I’m done writing hips hurt to much to think clearly and the word calls for responsibility, breakfast for small humans, more coffee for me, gazing at what stylish clothes I won’t wear today, school drop off’s, work for others and doc after doc, maybe if I’m lucky I’ll join the poets and disconnected painters later today, maybe if I’m lucky I’ll come baring gifts of love and joy. Until then.. Be well, be kind and remember to look up, if not for just one small moment when you feel most encompassed by your world, look up and remember their is so much more out there.
9/20/12 4:00am pst
Well after a day of doctors I’m broken. Tremors are ok today and the whole PD thing is stable but my right hip is in a ridiculous amount of pain. I’m forced to use my cane 100% of the time right now. X-rays yesterday I should the results today some time. The big bummer is with all the meds I take it pretty much rules out any type of pain killers except ibuprofen which for anyone with chronic pain knows only goes so far. Anyhow that’s it, sorry no poetic stanza today just simple words from a simple man. I pray the pain will ebb long enough for me to get to the studio( two flights of stairs down) not always the easiest thing to navigate. To all much love, be kind, be brave.. Until next time.
9/22/12 3:30am pst
Can’t sleep… Want to sleep, just can’t find that balance today. So much on my mind. Work is turning into a fiasco, sometimes I think I’m in over my head which makes me sad, I’ve been doing what I do for 25yrs, simply said I manage people time and money.. I just physically can’t keep up anymore, I came into work yesterday and had an inches worth of paper work to read through, anyone familiar with PD will understand how ridiculous that is for me. I was a good boy read through everything and then promptly forgot 90% everything. If a cant turn it into a bullet point and access it later then I’m screwed. Anyhow I’m rambling of unimportant things at 3 am. Over and out. Be kind and love someone.
To my Bonny Lass: I’m sorry I’ve failed you.
With eyes like emeralds I’m drawn so deep.
Into a place no demons can creep.
Hair like fire and skin so fair
Only she can take me there.
With a laugh and kiss our bond oh so deep.
Fifteen years in the making a promise a promise I keep.
For all of my days and all that come after
A vow that we made in front of a pastor.
Now my poor girl I feel that I’ve failed.
Your white knight has rusted my coffin half nailed.
I fight off the demons try to keep them at bay.
Slowly and surely they come as they may.
Taking my armor one piece at a time.
Falling like soldiers all in a line.
Till my last dyeing breath I promise to fight, no my sweet love “I will not go quietly into the night”
” For all of my days and all that come after”
Sadly enough the person I write this for will never read it as she not once read my blog.
I am running out of strength, both mentally and physically. I’m sorry my love.
Been up since 4 am.the weather is starting to turn, my favorite time of the year. It gives me strength, which I so desperately need. Work for 9 hrs today then rest. Be well world much love.
What a day, 9 turned to 12 hrs at work, not bad for a disabled guy super busy a small phone books worth of emails to sift through. Missed my 1 pm pills by 2 hrs. Duh.. My bad I get so caught up in what I’m doing then its like hmmm. Why do I feel like crap. Silly boy I am. I need a large glass of wine and a small good steak, a wilted spinach salad and a back rub…then a few hrs in the studio and my world would re aligned.
9/24/12 I think
These next two days at work will truly be a test of human will. After my day yesterday my body is as broken as its ever been. All of me hurts. I haven’t been painting, my mind has been wondering to places it shouldn’t go, work then sleep, not a very exciting or rewarding life. But at least I can move and breath and love. Sometimes it’s hard to remind myself of those things when all I want is paint and read and watch my children grow, which is kinda funny statement since my son is now taller than I. Enough of the rantings of a lost soul hungry for change but to afraid to find that cliff.
To all, be well, love the ones you have, forgive the ones you don’t. And remember to smile.
9/28/12?? 4:00am pst
As the world wakes me from my slumber. I am vexed. My mind wonders like a mouse in a maze darting from point to point. These disease and medicines make it hard to think as I should. A roller coaster of thoughts and emotions. Compulsions overwhelmingly drive my thoughts. Sadly this is not who I am. I (was) calculating and precise, passionate yes but at least I had self control now it’s as if I’m drive to this madness that lives in my soul, it scares me to watch, Pollock and Picasso films and see their descent into madness and totally relate. I bare myself to the universe each day as I publicly write these journals in hopes of finding compassion and hope, hope that someone can commiserate with me but the cold hard truth is I’m alone in my thoughts. Today is hard because I’m torn I run a multi-million dollar business that requires a certain type of thought pattern, but as my disease progresses I find that I must feed my soul more and more and it’s getting harder and harder to be both men. The provider, white knight vs the poet and painter. Oh well… Enough of this rant it’s time to put my helmet on and polish my armor
There are other battles to be won. Thank you kind souls for hearing my heart. Be kind to someone today, for no reason other than a senseless act of goodwill.
9/28/12 7:30 pm pst
Finally starting to feel like myself again. Turns out one of my meds was causing some serious issues, I knew it was happening just didn’t have any power to fix it. That’s the problem when you start messing with brain chemicals. My doctor assures me that if i taper back the horrible side effects I’ve been having will pass. Unfortunately my PD symptoms will get worse but for me it’s a trade off I’m willing to make, I get self control back and give up some of my body, so yes let it be said. Universe I trade you part of my body for my mind.
To all who make it this far down the page. Thank you. Be brave, have faith.
9/29/12 3:45am pst
Sleep, it seems to have eluded me again, crashed at 10p tossed and turned until 3a now I’m up bummer. Already starting to feel the effects of less ropinirole in my system which is nice. Except the fact I can’t sleep. I might just be an ok day.
Today has been a great day in the studio an a horrible day in my head. I was doing real good until about mid day then wham!! It’s like being a little kid and seeing something you want really bad with all your heart and soul that you can never have. It’s driving me blanking crazy I’m so vexed by these emotions no finality they started and now they have no place to go, no ending note no food bye just lingering persistent heart ache and I hate it. It’s like being a teenager all over again.
Hopefully I’ll be able to sleep tonight. I was up at 3am today and I’ve got work in the morning. God grant me peace.
9/30/12 4:00 am
Hands not really working so well today
Went to bed at 11p up at 4a my head is still vexed a bit this morning which sucks as I am trying to get ready for work. Sunday’s are my operational planning day. All the things the business may need get planned for today. It’s kind of like shaking a snow globe and trying to plan for the placement of each falling flake. Thankfully I’ve been doing this for a very long time and I have my phone and about a million voice notes so I don’t forget stuff, thanks to the Parkinson’s and the meds to treat it my once cold and calculating mind has turned into a giant roll a decks with no marker tabs so retrieving info sucks. Anyhow to all who read and those who don’t be well,
Be safe happy and proud of who you are.
10/1/12 I think
Having a really hard time this morning can move good at all it’s called bradykinsia and it sucks, I should be showered and out the door already but instead I sit and wait for my meds to kick in. And so far all they have done is cloud my head. So much to do at work….
I’m left a bit speechless tonight, for I have no muse currently. I could be angry about many things I could be upset about many others but I’m finding it hard to find my words, emotionally drain I suppose. Physically drained absolutely. It could be that I have so much on my mind that I can’t quite put into words. Started a Facebook page not that I really care about FB but some friends “encouraged” me go do so. I’ve run into many people whom I haven’t seen in years, that could be why I’m brain freezing. To many past emotions. I really need something new in my life it’s kind of one of those catch 22 I think is the phrase. Need yet fear change. Have love want more. I think I need a trip, back to the coast for a few days. I think that when the only passion a person has in their life is what they create for them self it becomes dull, I think that’s why I crave this WP thing. Passionate people, broken and in need of validation, compassion friendship and hope. Me I’m no different I turned to this space to find peace of mind, to find an outlet for my feelings of having Parkinson’s disease at 42 years old. To share my art, to share my heart to watch the world fall apart, through the eyes of strangers. To feel with them and for them and maybe just maybe find a small piece of passion to put close to my heart to help me feel again, to find my muse.. Ok enough boring blah blah of everyday life. I hope the world is kind to those who read this and those who read this are kind to the world. Look someone deep in the eyes and thank them, thank them with so much conviction it brings tears to your eyes make it real, make it feel.
10/3/12 4:30 am pst
Their is a stillness in the universe this morning I’m not sure I like. The poets have grown quiet, the painters are not painting. The passion has been replaced by silent remorse. Places I turn to for insight and prose have been replaced with politics and woes. Where have all the artist gone? Sing me a sing of heartfelt bliss of silence and lovers or years gone by. My hands shake as I write these thoughts today, pills, coffee contemplating the day convincing my stiff bones to please release me so I may continue my way. But this loneliness consumes me. To here your voice even if it was the one I made up for you in made head would be a lovely thing.
10/5/2 4:30 AM pst
Today is going to prove challenging, one of the biggest triggers for PWP is stress. As I am still working this fracture comes into play a lot. Today: write schedule, plan next week, chat with boss, plan marketing q4 meeting. And the list goes on and on. Doesn’t help that this morning my symptoms are huge. Hands shaking, dyskinesia grade 7. I’ve acquired this new little(ha) tremor we like to call “Boo”. Imagine your taking a nice mid-day nap, or silently reading your favorite book. And someone sneaks up behind you and scares you!!! How all you muscles instantly freeze or constrict, well… That’s the Boos as we like to call it. I get them bout 400 times a day, frankly it sucks, not only does it make typing or working with the public a bit troublesome but by the end of the day I’m exhausted, anyhow enough about me, time for some much needed coffee. Be brave be kind and really folks try and be nice to each other. You never know when you’ll need the kindness of strangers. Much love
The night is young yet I feel a heaviness in my heart tonight as I listen to the joys of others from afar, I miss dancing , sword fighting, I miss a lot of things that have come and gone in my life if I was young enough strong enough brave enough, sometimes it’s hard having this disease my body shakes so hard some times it makes my teeth rattle and my shoulder clench so tight I think they’ll stay stuck that way. I miss flirting, I miss long walks with out rest breaks I miss the passion of being young and alive. Sad thing is my mind is still young and in love and passionate. In my head their is still a warrior a white knight, coming to save the day, chase the demons and defend your honor. Enough of this whining sorry of any of you made it down this far to read my bad night. Sometimes my new life sucks a bit more than I care to admit.
Hug someone, love someone and most of all let someone love you.
The morning finds me again as it has found me so many a day, up before the birds, the critters all still nestled in their beds. They say that sleep disturbance is a common complaint from PWP ( people with Parkinson’s) I suppose I would complain a bit more if I didn’t love the morning so much, where I live the morning brings a blanket of calm a stillness that cradles the world. It invites me into the day with no judgement. It cares not that my hands shake or my shoulders roll. It only cares that I am their with her welcoming the day. Morning here as for most you have become cold, my heart lives the cold, my body not so much. This will be my first full winter as a full fledged Parkinson’s patient, medicated to the hilt for almost a full year ( 11/04/11) started my first group of pills. So we shall see how it goes. This morning is not so different than many others, the muscles in my hips are fully constricted gripping my lower spine in a death grip, pretty painful, balance is off, steps are slow and old man like. Hands shake, thankfully the ” Boos” have not found me yet as they plagued me so yesterday. Today will be day 2 of 4 at work today is my planning day, for next week. It’s actually one if my favorite days at my job. It’s where I get to impart 25 years of expertise into my team. I outline the week ahead in all of its details, right person , right place kind of stuff, manage tasks and deadlines. Define corporate expectations, blah blah. Any how I enjoy it. Makes me feel like I’m contributing to the success of others. Anyhow I must put this on pause as I can not stay in one position to long the muscles start to think this is how they will be for the day, so I’m off to wander the halls of my home as I do every early morning. Much love to you all. Today I leave you with two of my personal quotes: Everyday is both a challenge and a blessing.
2: Only give of your self what you would give freely completely void of expectation. Have a wondrous day my friends. Be Brave, Be Bold..
10/9/12 3:00AM PST
As the world sleeps I drag my sleeping bones from the bed, chased,by dreams of demons and rats. Sleep has not come easy for me the past few week. Stresss from work or meds or what ever its been a drag. Im a bit nervous today as in a few hours i will be up at OHSU Parkison’s Center. The speach pathologist i see each week has been tracking my cognitive decline for the past 5 months and the last 2 test a had with her have not been, well, stellar. My wife likes to kid a say im getting dumb, Ha,Ha,Ha….. Its not about smart or not its about how the brain process information and as my brain now thinks its in its 70-80′s well my process have started to slow. People often ask what do you mean? well in the most simple terms, Imagine everything you have learned, including how to walk and talk, problem solve, and all the information youve learned being stored on a nice neat organized roll’a'decks in your head, Parkinson”s effectivly takes all of those nice “tabs” off the roll”a”decks and shakes things up. So i have all the information, just cant seem to find it as fast anymore. Short term memory is directly effected as well as the ability to handle major stress. So for a guy like me who works in the public eye, deals with a major multi million dollar business, it can be a little overwhelming., And the thing that sucks the most is ive been managing people time and money for the past 25 years!! This is what I do, professionally its all I know how to do, very depressing. So today I go see the big wigs at OHSU to get an indepth study done on my brain and how it working or not, big league players PHD’s and such will be poking around….
In the cradle of like i offer up my soul, i release my armor and hand you my heart.
beware for i am tender as a child guide me with your grace and your guiding light.
This old soldier is tired, shaken to the core for life has stolen my sword.
I ask not for wisdom, courage or stregth,.. Just a safe place to rest my soul
free from the demons, curses and visions of the past, free from the monsters
that search for my soul..For a thousand years I have wandered this world
chased by ghost, guided by angels. A knight to some a devil to others.
let me rest my head one last time next to your beating heart, let me feel your calming
touch one more last time before the rains start to fall and wash away my dreams.
with hands shaking, heart full of fear, i come to you in the mornings night and beg
for your heart, your body,…..my soul..
To be continued….
10/10/12 4:30 am
Good morning, the day starts a bit slow today as I am in tons of pain, thankfully I have PT this morning early. 8:00am. Then the day is mine. I’m down to my last panel to paint on so I better make it count right.. Hands a shaky this morning so it’s hard to type. So this will be short. OHSU yesterday wiped me out. Nothing like having someone mentally dissect your cognitive abilities for 2.5 hrs. So today I’m dedicated to regaining my self worth a I will paint. Anyhow fingers are basically useless, I’ll continue this later, xoxo people talk to you soon.
10/10/12 3:30 pm
Some days ya just can’t win. So day off early session at PT should I had the day to enjoy myself. Physically my body just feels broken today and my PD meds have been making me really nauseous lately. So instead of enjoying my day I’ve be sleeping. Giant waste of time. See the thing about PD is since there is no cure and they don’t really know a whole ton about it all they do is treat the symptoms and just like when you have a really bad headache and the aspirin just doesn’t do the trick. PD meds are the same some times they work great and others they don’t work at all. Today is a not at all day. Of coarse right, it’s my day off.. Grrrrr. Anyhow much love, I’ll try to paint tonight a share if I’m lucky. As always be brave, be kind.
So I know it’s hard to be a caregiver but it’s not like I’m that broken all the time. I cook 5 or more nights a week, do dishes kinda and laundry kinda. But some times I think my biggest heart break is the fact that the one person who I should be able to depend on only really give a #%# as long as my PD doesn’t interfere with her life. I’m probably just being to sensitive. But when I sleep all day it’s not because I’m lazy it’s because I’m exhausted, in pain and overwhelmed. So their, why do I blog, why do I whine to total strangers, lay my heart and soul out for the world to see. Look no further for answers unfound. When I say I’m alone, it’s not always metaphorical. Ok enough for know.
Advice of the day don’t drink a bunch of wine, have a super emotional blow out after getting crappy Neuro results and tweet poetry to strangers. You will regret it! For those of you who have managed to scroll all the way down here thank you and I apologize for my outburst yesterday. I got some negative test results and then yes as you may have guessed had a highly emotional conversation with my wife, the really depressing thing is that after all was said and done per usual I was the bad guy. It’s hard to explain to someone that this disease make me feel like everything I was is being stripped from me piece by piece, and that I’m not being overly dramatic. And I still feel like it’s fine I have PD as long as it doesn’t interfere with a certain someone’s life agenda. Oh well, my head is pounding from to much wine and my hands are shaking from touch much PD. I’m off to work for the next way to many days. Much love. Be well and be kind, take the time to open your heart and your head. Life may give you a gift when you least expect it.
Until next time.
The rains have come to cleanse my and wash away the pains of the day. With a hopeful heart I look to the heavens and beg for better days. Some ease from this disease that holds fast and strong. A slowing of symptoms is all that I long. Since my diagnosis almost one year ago I have been on a relatively fast decline every month or so something new appears, shakes,dystonia,major dyskinesia, loss of executive functions you know all the fun stuff.
Most recently, for the past month or so I’ve been experiencing massive myoclonus: Spasmodic jerky contraction of groups of muscles.
For me it’s been in the shoulders, it happen about 600-700 times a day, or more I lose count ( no joke ) and they hurt like hell. After my last OHSU visit oct 8th I was and have been pretty depressed. Imagine being
Mentally at the top of your game at a point in your life where your age and experience basically in balance. Professionally I’ve done one thing for many people for the past 25 years, manage people, time and money. Well my last docs visit was all about cognition. Or my rapid failing their of. Imagine waking up one day and having your brain all of a sudden be 69,70,80 years old. Fine if your really that old, not fine if your 42.
So to bring this long boring story back around, I pray for change for the better.A new season a new chance to not be so broken. A chance to remember who I was, am and can still be with this “new me”. Easy to say, very hard to do when your living in it day to day. To all be well, be kind and thrive in your life.
I was reminded today of the callousness of our world. How we hide behind this vail of button pushing “like” how often people come to this Internet as people they are not. Which I understand completely the human need to be something we are not, or to express what we want to be but can not be in our real physical day to day life. I mean I wish I wasn’t sick and I came to this place to express my frustration with this disease and have a place to put my art so when I went to gallery’s I could just bring the lap top and say, “see this is me”, again I digress as so often I do. Let me be very clear so anyone who may purposefully or otherwise read this. This blog is exactly what it says it is “Expressions of My Life-An Evolution of Art”
** My journey through life as an artist, father and person with young onset Parkinson’s disease.** why you may ask is Ben restating the obvious? Well back to the beginning, well if I comment on your site and say nice things and make expressions of friendship, that’s what it is, nothing more nothing less. If I new you in the physical I would do the same, buy you a cup of coffee and say, nice painting or your an amazing writer. Or offer condolences for your trouble or pain. I’ve lived and done things in this life that most people don’t even have the imagination to write about. So when I say something or express something its as transparent as it get, this IS my real life no F’n poetic fantasy or retouched photo, my face, my fears, passions, painting and random thoughts that people seem to think resemble poems of a sort. So that’s me. Enough said should be pretty clear to anyone who can read, who and what I am. And if for some reason i was unclear in any and you actually want to know, ask……
Be well, be brave have faith in who you are!!
PS. To those who do kindly answered my vague request about life, I greatly appreciate that. I can’t speak about it directly because in my town a lot of people know exactly who I am and what I do, and if I broadcast some major life changing event (like I just may have) then its 400 emails and twice as many calls. And really that’s just way more than I need right now.
So another day is here, I’m trying to stay really positive but it sure seems like life really wants to challenge me these days. Painting are going well, home life is getting better. But work keeps throwing me curve balls. Because of my Parkinson’s I’ve had extra help and over the past month that corp help has been withering. I’d dare to say at this point it has all but dried up. Now I do have another option but it doesn’t come with insurance. Since I take 25 pills a day not having stable insurance is a very worrisome concept. Guess I better start selling a ton of painting lol, anyhow I don’t have anything poetic to say this morning. Completed the auction piece which I’m very proud of. Now I can get started on my next series ” Dark Angel”, we time for pills and shower. To all be well, be brave have faith and thrive in your lives.
As the mornings chill guides me from my sleep only to awaken stiff and shaky. I sit and ponder the day. Of all the things to come made of man and made of me I’m excited to rise this day. Of borrowed bones or not I greet this cold and black morning with my heart and my head held high ( kinda),
Work kicked my but last week, as I sit and try to shake my way through this post every joint in my body is gladly letting me know of its presence. PT at ten AM then auction stuff and the rest of the day is mine. 2 days of working from home on secret stuff and paint like the madman I am. And I tell ya if I have to press backspace one more time I’m going to scream. Sitting outside typing with PD, not using voice software as to not freakout the neighbors. Two clicks forward one click back.. Grrr. Anyhow. Off to the studio. A simple message today. Find peace in your heart for a split second and then try to remember what it feels like when you need it most today. Much love, be brave.
~ Pain shatters the night, grips my body and begins to shake. I wake, quake, take more pills. And pray the sun will take some of my pain with it as it raises into the sky.
The morning finds me so, so broken today. My hips feel like I was hit by a car. You see I have this problem, I seem to sit somehow think I’m invincible. I like that little kid in the movies with his superman towel cape standing on the edge of the top stair ready to jump, he knows he can fly!! Me same issue. I have a day of “feel good” so I run around and do stuff like normal people do and the next day I pay dearly. Today however I have no errands to run besides shuttling people to and from school and work the rest of the time I will be painting. To the world be well, be brave and thrive.
The day finds me once again up before the dawn. Shaking and quaking through my day. The pain woke me this morning. Waves of red hot pain flowing from my neck down my back and settling in my hips. My hands tremble like a school boy on his first date and hips scream like a runners 25 th mile. Today I face the challenge of a marketing switch at work, plus all the inventory stuff I do everyday. It’s a strange thing to think if I was just a little bit more broken I could call it quits and apply for disability. And then theirs my pride and my desire to provide for my family that always wins. I was mostly raised by my grandparents 3 sets of them, being shuttled around from place to place. I don’t regret that in fact it taught me morals and values I don’t see in most people anymore, kindness, honor, loyalty,patients and a will to put others first. I think that comes from watching my grandmothers self sacrifices, any how I digress. Thanks for that little trip down memory lane. I’m making a special doctors appointment for this coming Tuesday, something just doesn’t feel right, and thankfully my GP is very open and understands that prior to my PD I was very in tune with my body. 20+ years of aikido and learning how to observe even the slightest change in any pattern. So we’ll see how that goes.
-As we walk this earth in search for truth or stumble our way blindly down paths un-chosen-stop from time to time and smell the roses for the longer we grind away at the things we think we need- the farther away we move from the things we already have-as the night comes and chases away the light fear not for the night is its own day you just have to learn to see in a different way-a new normal will one a thousand times in our lives and it is how we perceive these changes that deem them good or bad. So look for the light in the night, hold your flame high. Be brave, Be strong, Be well and I will look to you for those things when I have none.
Be well. Much love.
Shaky, shaky,shaky… Shake… Seems to be the theme of the day. It’s funny when I wake up and I’m not in pain I sometimes forget for a split second about my PD. So I’m sitting on the deck off the bedroom drinking my coffee watching the rain wondering why won’t my darn phone stop wiggling….lol…, oh yeah… That’s right… Sets phone down looks at right hand and it’s doing it’s own little dance.. Kinda funny from my perspective sometimes. I suffer from peripheral neuropathy so often I can’t feel my extremities, dangerous when cooking but otherwise funny at times. Taking an extra day off from work for doctors stuff this week and to clear my head a bit, Ada complications currently at work. Sent an email to the Jan’s foundation and they said I should talk to an ADA lawyer but I’m not sure I’m ready to go down that path. I think sometimes my faith in people doing the right thing bites me in the ass. I tend to be a bit to forgiving if their is such a thing. Sometimes feels like truly nice guys do finish dead last. I mean what happened in our society that doing the right thing for a person became secondary or unimportant. Humanity seems to be tainted at every corner with greed. I’m going to stop there because I could write a small book on my feeling about the issue. So I hold strong in my stance.
As always. Be Brave have faith, be kind to each other and laugh, laugh hard and big. Smile because you can.
The day is mine!! Well almost.. Kids to school, wife to work then…. The day is mine.. I have so many things to worry about at this point that I’ve reached my wits end. So since I can’t really fix any of them today I’m going to paint and paint and paint. I’ve been talking to a PD advocate about filing for ssdi and I’m pretty sure I’m going to go back on short term disability, then potentially long term, between PD symptoms and med side effects working has become amazingly difficult. I basically have no life. I wake up in pain go to work, make things more complicated come home eat then sleep. My depression has become a monster, so for quality of life disability seems to be the right choice.
On a separate note for those that endure the long boring read that it takes to get down to the bottom of this page thank you! Your support and kind words mean the word to me. They give me strength, hope and belief that their is still some kindness left in the world.
So again thank you from the bottom of my heart.
10/24/12 4:00 pst
Four AM seems to be my time, my body usually wakes me around 3-4 am and starts screaming for pills, plus the house is asleep so it’s really my only quiet time. I have 3 hrs of PT and a doctors appointment today not really very excited about any of it. I have to make some big choices today or at least have some big conversations, I’m very seriously thinking of going back on leave. Work has gotten to the point where I’m failing because of my disease. Work causes stress, stress causes PD to be worse, pain and such from symptom increases and severity, which causes me the need to take more pills, which causes brain to turn to mush. Very, very vicious cycle. It makes me sad and is a very hard choice to have to make again. My PD advocate is going to send me some paper work to start getting the ssdi stuff in order as well. It’s pretty scary for me since I’ve worked since I was a small boy, first on my grandparents farm then at 13 for real business. I’ve been a GM and up since I was 18. But I can’t really complain I’ve seen the world for all it’s good and bad, I’ve loved, lost, raised a family maybe it’s life’s way of making me take some ” me” time. To all who read this- much love- be brave and have hope.
thank you .
Sleeping I don’t seem to be doing much of it these days except for in the afternoon I woke this morning to find most of my muscle in a fist fight with my bones, it seems someone said something in the middle of the night and a bar fight ensued. So here I am at 3:30 trying to break up this fight, I mean really guys can’t we just all get along…(laughter..) no, ok yep it’s another normal day on planet Benjamin standard routine is as follows, coffee, more coffee, write or finger type carefully on my phone( hunt and peck) yes I’m part chicken.. Wife wakes up, chit chat if I’m lucky otherwise, grumpy face, lots more coffee and a small pile of pills. Today’s Friday so girl child no school she sleeps till whenever, take the misses to work, yes sadly only one car had to sell my race car last year. It was a stick and my legs can safely do the whole clutch brake thing, plus after 8 MRI’s even with insurance medical bills pre-diagnosis $$$$ so hence one car, anyhow wife to work, boy to school, then the day is mine!!! Today’s agenda: clean studio, prep two new panels, work on Dark Angel some more and stare at my abstract landscape “Savannah ” for a bit. Anyhow. Hands cramping and I’m sure this is boring as hell to read, go, go have fun and stop reading about the broken guy. As always much love, be brave, laugh, laugh big and hard, then someone please tell me how it felt I miss that so much.
So I slept kinda…..stupid PD… 10-p to 3a that’s 5 hrs…. Not sure why I’m up hands are shaky muscles hurt a bit, can’t type worth a damn this morning but that’s nothing new. I was taught a new trick, yes kinda like an old dog… If I rest my arms on my legs and hold my phone with both hands, my hands don’t shake as much.. Only last for about 6 min before my elbows start cramping. But hey I’ll take 6 min over nothing. Ok that’s enough I an update I’m going to go stare at paintings.
This will be a short post as my body is throwing its own little revolution today. My hands have decided to start doing this new cool thing called locking up at least that’s what I’m calling it. They just randomly decide not to let go of stuff and if they do fit my arms ate bent the my elbows start to cramp up… I mean really who even knew you could get cramps in you elbow joints! Anyhow I’ve got little man home with me today so I’ll be in and out of the studio making sure he’s doing well, I have a feeling I’ll be doing lots of sleeping today. Last night I would sleep for about and hour and a half then get up stretch out walk around for a minute then come back to bed. Did that from about 8:30 till 3 am when I just said screw it and got up once and for good.
If your on the east coast please be careful and where ever you read this from, Be brave, have hope, faith and be kind.
It’s been a rough morning already, just about nap time, saw an old friend at the store this morning. Always hard explaining why I have a cane. Sometimes I just say I have nerve damage which isn’t a lie, it’s just not the whole story. It’s awkward hearing people say”oh.., I’m so sorry” it’s not like they gave me PD, I’d almost rather they lie and say well you look great! Not really but what ever. Tremor, stiffness and slow have been buddy’s today following me around like a list puppy, now only if they were cute and fuzzy…
Anyhow I finished one piece today and am going to get started on another this afternoon, a treat for a little blue butterfly, I’m going to nap now so to all, have faith, have hope all things change so when it’s good enjoy it and when it’s bad, just hold on.
Until later. Much love.
Another night of me, the cat and the couch, I haven’t been sleeping well as of late tremors not to bad tonight, body aches and stiffness very high. But still no sleep
Theirs a stillness and chill in the air tonight. I slept for a few hrs last night only to wake and find myself in need of something I can’t have, what that thing is I still haven’t figured out, figure if I knew then I could sleep.
The words drip from my tongue looking for a place to land but find no peace. No languid rivers no glistening pond to bathe gently upon. My mind races to place and face to help save my soul, to release me from this torment. A soft rose to guide me back to sleep. A lullaby of whispers sweet and pure to erase these demons from my sky. I can feel the cold biting at my numbed flesh, wonder if it hurts. As my hands begin to shake I know I’m awake, this no place of in between. their is a calm in this cold mornings night, my heart aches for your sweet embrace, cover me in your angel wings
Sing to me that song of sleep, take me to your darkness deep, warm and gentle soft as petal…. Take me…..take me…. Home…..
10/31/12 6:35 AM pst its going to be a long day. PT and speech at 9:15 then home fast shower, then to town to meet a friend for lunch and coffee. I need to buy some paint as well, plus I’m very low on panels only 1 left…. Oh no!!! I really need to start selling some pieces I’m running out if room in the studio and the mrs. Doesn’t like me to spread my stuff around everywhere. Oddly enough she’s not a fan of abstract art. She does however like the surrealism I create. Anyhow arms and hands cramping to much to type
Much love, happy all hollows eve!!
10/31/12 8:43pm pst
I’ve been awake since 1:30am this morning in all my wasted time today I did a little math and even by a conservative estimation I’ve had 4320 myoclonic spasms bilaterally across my shoulders today. Not very fun. That’s 4 major muscle spasms strong enough to physically move my body every minute for the past 18 hrs, again conservative estimation. Needless to say my shoulders hurt like heck…… Many other words came to mind but it’s late I’m feeling a little PG, hopefully I’ll sleep tonight, surely tired enough.
Much love to all.
I thought for sure I wrote in here today how strange, I’ve been up since 2:30am seems I’ve had plenty of time to do so. The day has come and gone… It’s now raining in my cognac. Butterfly Blue is done, I went and restocked on paint am the Mrs. Reminded me that I spend to much money…. Which is funny because the only thing I spend money on paint! paint and panels the rest of it every penny goes to the family so I never really feel that remorseful for spending. I managed to sleep for a few hours this afternoon which was nice. I’m in between pieces and only have 1!!! Panel left, which makes me crazy I feel like its the last piece in the world and I need to make it my master piece…. Until I go buy more panels then I relax a bit. Tremor and all things PD are present but manageable today, I saw my OT gal today and she not only heals my torso but my soul as well. Ok enough dribble time to cook dinner, I love to cook the more “gourmet” the better fancy does not mean expensive, at least it doesn’t have to, any how the kitchen calls. To all much love, happiness and peace.
Be well, Benjamin.
11-2-12 2:30 AM PST
This is getting a bit silly I would love!!!!!! To sleep all night long. Woke up at 2am super wiggly but not in much pain which is nice. I’m just starting to feel a bit like a zombie. Well today I need to go buy some more panels so I’ll be off to see the wood guy. It’s funny because the place I go is a “mans man” wood place everybody’s a construction dude and then theirs me granted I’m 6ft 200# not a tiny little boy but they always look at me funny when I’m like yeah in need you to cut these down into 3×4′s cause I’m a painter… and their always cool about it we joke about not letting the wiggly guy use the saw the give a good deal I leave happy so all is good. Although today I might get some Masonite it hold up better under the pallet knife this time of year in the PNW. And if I don’t start selling some stuff I’m not going to have anymore room. Oh well I’ll figure that out soon enough. Supposed to meet with web design people today, sage and scribe web design the company my friends started is doing is doing it. Anyhow I’m babbling to nobody because everybody’s a sleep. Good morning world.
Be brave be kind and love.
**The following is rather personal so only read if you dare**
When an artist has a muse or an inspiration it often drives them with deep passion to do great works. Picasso had many lovers and a number of wives, also Pollock was known to keep fancy with multiple friends. Miro I’ve read was much more sedate in his love affairs.
I have an affinity towards writers, now granted I’m in a monogamous relationship, but the thing I think humans get vastly-wildly confused about especially women towards men is that because we love you for one reason or another that we want to have sex with you. Strange thought I know. But have you ever feel in love with a smell a taste a color a texture. We say it all the time oh I ” love” that dress or I love that car… See what I mean? Then why can I not be mused by many things that fill the voids in my heart and soul. I can listen to Yo Yo Ma on my iPod while walking down the street eating a piece of dark chocolate (70+%) drk please, and feel pretty damn good about things. I can feel the paint in my hands and the smell in my nose and be taken to a place no person can take me. But my muses what I get from those I chose is to feel alive inside. To feel your pain,joy,laughter makes me whole again, why? I have no idea but it is what it is. Sure as a younger man to make love to my muse, drink wine, smell roses speak in prose to each other all night, laugh cry was all part of the process, but now as a man who has seen and done things that required me to be numb to the world, I require your love, your experiences your words,for mine always end dark. Abused, tortured forgotten and misplaced. All of my life. I find such sanctum in the minds hearts and souls of others. Ok well that’s enough the door to this painters heart and mind is closing for the night. Be well, enjoy the world, revel in its tastes and smells, feel with all your being. Be whole. Namaste
I sept!!! I paid for it but I slept. Nothing like waking up with my body shaking and constricting so much your not sure if it’s an earthquake or what. I want to clarifie my previous post. I am not in love with every writer or poet female I come in contact with, what I mean is that you can love someone regardless of physical relationship with them. Ok clarified. Today is an interesting day thus far. I have a strange weakness today it’s a little disturbing feels like my blood pressure is bouncing around a bit, which is not good. Anyhow I’ll continue with this post later I need to rest a bit, xo
11/4/12 been up since 1:30 body thinks it 2:30 stupid daylight savings time gonna screw up my pill schedule all f’n day. It’s bad enough I can’t sleep worth a shite anymore and really it’s not like I’m a freakin farmer anyhow. Ok I feel better sorry bout the ranty rant rant. My everything hurts, my symptoms are changing it all started when my back and my hip started getting sore. I let that go on for really who knows how many years then about two years ago the pain in the hip and left leg started to get intense so I let that slide for as long as I could until one day I work up and it literally felt like I’d been hit by a car, I called in to work and went to the docs.
That was July 2011 kept working till sept 25 th 2011 when I took my first leave of absence meanwhile I’d gone to see multiple docs and nobody could figure out why I was in such pain. I just figured I was getting older. So sept, oct 12 MRI’s later so many blood tests a vampire would get jealous and scads of X-rays and everybody’s stumped, meanwhile my gait gas changed I’m walking abit funny and starting to slow down. End of October some time my sun doc says let try this test and pulls a this straight pin, I close my eyes and he starts poking my legs and feet , can you feel that? Or that? How bout here? Nope, nope oh a little there. I open my eyes and I have all these little poke holes in my feet and legs but no pain, I think yes!! I’m gonna go kick ass… No jk not what I thought we’ll kinda but really hmmm is more like it. Doctor has this obviously unsettled look, I think you need to go see a Neuro, ok.. Blah, blah story’s Getty long and my damn arms are cramping. Stupid time change.. See , nuero my poking, walking pinching, after a few visits we come to today 1 year ago 11/4/11 he says I think I know what wrong with you, gives me these yellow pills whole bunch of’m says start with one, might make you feel a little sick might not, take as many as you need every 2-4 hrs or so and come see me in a few weeks.—I go home.. By this point I’ve had so many docs give me so many pills I don’t care if it will make the pain go away I’m all for it, so I take a pill (sinemet) or also called carbidopa-levadopa I know sounds like a spell from a HP movie, by the end of the first day I think to myself huh… This stuff seems to be working what the heck?? Spends a few minutes doing research…. Not good…. This s%#}# only works for PWP. The end of the months rolls around and my first Neuro says well I’ve got bad news I think you have Yopd for those who don’t know the meaning it’s Young Onset Parkinson’s Disease. Only about 1% of the people who get PD are below the age of 50 and even fewer my age 41 at the time and if you factor in that pd doesn’t start to present until they think about 5-7 years after your brain starts to stop producing the right amount off dopamine then I’ve had this crap since I was in my early 30′s. Bummer huh… Any how doc says since your so young I’d like you to go to OHSU for further studies. Their is no 100% test to confirm PD except autopsy and well I’m not really comfortable with that currently since I’m still breathing!! I asked are you sure you can’t just scoop out a little and double check..,? Since science says I’m only using about 10% of it I should have plenty to spare.. Lol… Doc didn’t like my little joke either.. So now a year later I’m laying in bed at 2:30 in the morning letting the world read about a boy and his dog…. No sorry wrong story… About me my life as a father, artist and person with Yopd. And rather frankly it sucks.! Not to be negative but I kinda had plans kids are getting older, thought about moving to the coast, now I’m having conversations with my doctors about ” well have you thought about long term care”
Be well, be brave and thrive.
I actually slept well.., kinda 12p-4a the joint pain this morning is extreme but ssssh that’s between you and I the mrs. And I have a lunch date today so I’ll be getting fancy. I love to dress up, not James bond dress up although I do have a very nice tux, vintage. And if we are really lucky it won’t rain. Anyhow I’ve not much to say, it’s the morning, I’m hurting but I refuse to let it slow me today, I have people that need me to be up and moving, so that’s what I’ll be. I have almost a full PT set up at home, meaning except a pool I have almost all the same workout machines at home. So I can stretch and bike at home as well. Alright folks go do something amazing today.. I dare ya clarify amazingly good!!!
So sleeping isn’t really happening tonight. I have so many thoughts going though my head it’s incredible. Poems and music, paintings I’ve done and would like to do. The thing about me and writing is it just happens I’ll be sitting outside like I am right now or hear a song or read a bit of someone else’s work and the words literally just start flowing out of my brain no strainer no spelling just words sometimes their poetic stories of my past sometimes just a bunch of feelings that find them self in the shape of a word. Anyhow it’s starting to rain an my phone hates the rain so I’m going in. Be well sleeping people. Much love
I slept beautiful sleep. 10p-4a today is mine, by some wood, rest studio time. My body has been in a ton of pain this week. My tendons and muscles in my hips and both shoulders has been pulling so hard the are starting to damage the capsule not fun. The slowness and stiffness associated with PD has come to stay or so it seems. Bradykinsia is what it’s called. Anyhow I’m excited to be at home today I need to recover from the week so far. I’ll be in touch later today. 1:35 pm same day: So i did much this morning went and bought more wood and a cheap little jug saw for cutting frame pieces with. Felt really good until a came home, then the exhaustion set in. Slept from 11:30 till 1:30 and now i feel like crap. So cramped up super stiff and shaky. Oh well it was a Great morning.
Sleep seems to be a funny beast with me theses days. Last night I slept from 10p-2a then again from 2a-5a and I don’t feel rested at all. In fact today will be challenging. After my morning errands of mrs. To work and kid to school I have to get ready for 3 hrs of PT which should be interesting. My body has been in full revolt mode for about a week. My pain level is huge 7-8 in all my joints so we’ll see. All I want to do is paint. I have new panels and a new saw that after my morning post yesterday sat. I came home from a great morning had my normal diet of fruit and nuts.., yes I’m part squirrel… And then the fatigue set in and caused me to sleep. Things around the house have been very demanding in the evenings as of late so no painting at night for a bit. Anyhow my day begins must dress for the day and hope for the best.
So I’m up.Slept on the couch again so the lady could get some sleep, I sure miss my bed. Something seems to be going wrong with my back theses days my lower back keeps freezing up on me. It’s very painful almost made me fall down yesterday when I was going up the stairs. Had a talk with me PT guy who says its because of the postural instability caused by PD. boy PD I tell ya it’s the disease that just keeps giving. Someone should really tell Yopd patients oh by the way not only is this going to suck but it’s going to start effecting all your joints rob you of your mental executive functions as well as turn your young healthy body into an old mans as fast as it can, so hold on its going to be a bumpy ride. It’s funny I read all these articles about how exercise is supposed to help fight the effects of PD well you have to be well enough to exercise to receive those benefits don’t ya.. My mother in law bless her heart she means the best and is an amazing woman brings me an article to read about how the Wii is helping PWP. The first thing in my head is well if I could left my arm up that high without loosing all the strength and feeling in my hand that would be amazing!! I don’t me to complain and I’m not really complaining as much as I am staying how it is for me. I don’t need sympathy,.. Well sometimes it’s nice. Mostly I just like to openly vent about how pissed off I am at this while thing ex: recon, black belt turned broken. Mentally it’s a hard pill to swallow. Ok enough ranting like a little baby. I’ve decided to stop getting so wrapped up in people’s stuff here on WP, people have this way of thinking because your nice to them and you genuinely care for them as a person or that your sympathetic towards their pain that you want something more from them. I mean really people all of this is one delete button away from being an archive record on some server farm. So unless your going to fly out here and shake my hand lets be real, I’m a normal guy trying to touch as many humans as possible in a positive way while I still can. I love my kids, wife cat, house and all the stuff that comes with it. Sure I’m delusional and seem to think I can create an awareness towards my art and the need for people to be nice to each other through this electronic means but it is was it is. Anyhow that’s me ranting about all kinds of stupid shit at 3 am in the morning. Much love to all and as always be brave have hope and love someone.
That was a horrible nights sleep. I finally got to sleep about 1 am then I managed to have bad dreams for 4 hrs they were not nightmares at least not the kind thy wake you in the middle of the night in a cold sweat those I can handle I used to have terrible night terrors as a child but that’s a different story. Last night was full of ghosts and fears the kind that creep in and linger at the edge of sleep and taunt every resting moment, dreams of failure to provide for my family, dreams of dead friends and family. Dreams you can’t wake up from because their not dreams their memories of real things and real fears. In 1997 my best friend and soul mate committed suicide it was actually a dbl suicide him and his girl, I had the pleasure of IDing the bodies. It was a Gemini knot one rope two nueces and one very tall bridge in the middle of the day. It doesn’t get much more graffic than that. He always liked to make a statement it was his was of saying to the world “Look!!Look what you’ve done to me” he was an amazing artist and an amazingly handsome man, as a team we were unstoppable. Matter of fact he gave me my only tattoo, a memorial of sorts to my grandmother who had passed away not even a year before, she was my guardian angel. But that’s another story. But I’m awake now left with only a tattoo and the lingering taint of last nights dreams. And one hell of a headache. To any and all who read this, protect the ones you love, tell them EVERYDAY how much they mean to you. Be brave, be strong and thrive.
2:52 pm pst
My hips are so sore today it’s ridiculous
My hands are really shaky making it hard to paint today although I’m happy about the ” youth” piece. So people are going to ask how I could name such a dark piece youth! I don’t really see it as dark I like to think of it as emerging light, or the glow from inside. I had a tragic childhood, passed from relative to relative from the time I was born until I was 5, then from 5-8 I was in heaven step mom, 2 brothers then at 8 gone all of it. Spent my 3 rd grade year alone until my grandmother moved up to live with me, that was good. So from grandparent to grandparent until I was 13. Spent hours and hours of my youth playing with paint, drawing and writing. My father was a world class runner so he was never home. And my mom was crazy Locked up or on the streets somewhere. I got my first apartment when I was 14 almost 15 and have been on my own ever since. Most of all of my original family has passed away, all the people I loved as a child even aunts and uncles it’s weird. 80% of my childhood friends dead or to lost to retrieve. So when I mention that everyone I once loved has been taken away I’m not just being mellow dramatic. It’s my life. My only true bright and shining light I have is my son, daughter and wife daughter whom I’ve raised since she was 4/5 and my wife who tolerates me. I have 4 friends that I hold very dear in my heart, Alice, Heather, Jim, Lyric whom I see about every 4-5 yrs ok this is depressing to write about so I’m going to stop. Blah!!!!!
Be well, find love, have faith and hug.
4:30 AM pst
Good morning, this is the second time I’ve been up today once at midnight for a couple of hours and the now. My pain level in my hips and lower back is becoming very worrisome. Also my left and right shoulder have been freezing up. Any how nothing to new to report this morning is still have Parkinson’s lol no shocker their. Ya know it’s funny I don’t mind the shakes or dyskinesia and when I’m at home the bradykinsia is manageable but the pain of having your muscles constantly trying to constrict kinda sucks. It’s like having the worst pulled muscle you’ve ever had except that it’s not just one it’s all of mine hands to toes. Any how boo who poor me ha ha what ever I will plant myself in the studio with my pills and paint and live my life the best I can although I have to start selling some paintings because I am running out if space, it’s actually a fear of mine is doing a beautiful piece an having it damaged because I have no more storage. Ok enough for now. Be well.
6:35 am- I’m not sure how I feel today I think the word is apathy. My body is racked with pain but my passion feels lost my heart feels nothing, I think I’m lonely.. Human affection, I know that sounds strange coming from a married man, but when you don’t feel appreciated at home and receive little to no contact it makes one lonely or sad, I’m not sure of the words. Maybe it’s the disease playing with my brain chemicals I don’t know. I guess I don’t feel validated as a person. Any how what ever. Be well.
** 3:20 pst PM
“Gray day. Everything is gray. I watch. But nothing moves today.”
― Dr. Seuss
11/14/12 4:35am pst
Well good morning world, I think no as a matter of fact I know I found my heart. Somehow he and my shadow decided to take the day off and well forgot to mention it to me, found the note this morning tapes to the icebox. “Dear, Body you have become far to twitchy and broken these past few weeks so shadow and I are going to take a bit of a holiday don’t drink to much while we are gone and remember to be kind and generous the world needs love.”
Signed H & S
PS. Don’t forget to brush you teeth.
So to my surprise I found the bastards sleeping in the front porch this morning it seems they forgot to take their keys.!
Ha serves them right, but they did bring me some lovely gifts. An Elysian Lotus flower from some botanical garden. A movie stub from a show called “Ela Enchanted” and a Blue Butterfly. Their we’re also some HastyWords at the bottom of a card it was rather touching I must say. Anyhow it’s time to take my pills and start these day here in my small corner of the planet. So as heart often reminds me to say. Be kind, be generous, be gentle to each other for you never know when one small word or a t I kindness can bring someone’s heart and shadow back home.
11/15/12 4AM pst
I work early today about 2:30am I’ve been laying in bed trying to convince my body to let me get up. In PD it’s called freezing where your mind says ok let’s go and the signals do get to whatever body part they are supposed to. Well I’m up now I have PT today so we’ll see how that goes, my hips and back are sooo painful this morning. I can barely walk. On the positive I have two backgrounds ready for paint and one frame ready for paint. I have to get busy and get my entry fee paid for the something red show. Anyhow not much to say this morning. I’m in a good mood, just really tired and in tons of pain.
Ok so I’m going to make a statement I don’t think I’ve ever said here. I’m scared. Scared out of my fucking mind at times about what this disease is doing to me, ya know it’s not so much about what I use to be, I learned a long time ago that coulda, shoulda, woulda doesn’t mean shit. It gets you nowhere. But this fucking PD is killing me and it scares the shit out of me. Sorry for all the bad words I’m just being real here. No flowery word to describe this crap it is what it is. Incurable, progressive neurological disorder, that’s a mouthful, fuck!!!!! PS. Again sorry about the bad words not really my style.
11/16/12 3:45am pst
Ok so I slept a little and my heart and soul feels wonderful today. I had a talk with one of my doctors yesterday and their is a very small chance less than 1% that one of my medications is causing my sudden spike in pain, so we are cutting out that med for two weeks. We’ll see. I woke this morning to a right hip that can not support my body OUCH!!!!!!! That’s all I’m going to say about that. I have two pieces I’m so excited to work on today. I have found some peace in my heart I hope it stays for a long time for I cherish the way it feels right now. Until later my friend. I hope the world is kind and generous to you and you to it.
The day is long on my bones and my heart is heavy. Waiting for my pills to work. I have a very important job to do today so I will not be around much, may you find comfort in your heart and strength in your soul and if you do not and you need more you my have mine.
Be kind and gentle to the world and may it be the same for you.
Much love Benjamin
Pain wakes me again for the second time tonight. Hrs before I can take my pills. Gripped tight by razor claws
held fast with jaws of steal
my body locks and rocks
begging for release.
As my feet arch as if to become cathedrals for this broken shell I can here their bones crack from the strain. My hands clenched not in anger
but rigor. I can feel the tendons
in my body plucking like guitar stings
as i reach out in the night.
2 hrs 24 min 21,20,19 seconds
before the magic medicine comes to take away just enough pain so that I can stand. So tired must sleep, be well world. To be continued……
11/20/12 4:30am pst
Good morning world, PT today at 8:15 it going to be fun! In the pool which means for me that I can run!! No impact and water massage. So lovely then an hour of spch and to end the day OT and some strange machine not a tens which I like but some zapper machine of some kind, it feels good. My mind is clear today, body is as normal but I have faith that they will help me. I slept very well last night, not for a long time but the quality was very good. As always be brave, have faith and hug!!
I managed to get about 6 hrs of sleep last night, for me that’s a lot of rest. I a woke this morning to to my normal shakes and quakes, the pain in my shoulders is not as bad today thanks to my wonderful OT person, my hips are still very sore though. I have the house to myself today for the most part, the kids are both on break from school so I can spend most of the day in the studio painting. Although I might have to run out for a doctors appointment we shall see. I have the moon piece that I am working on which has taken in a life of its own and a new piece I have started. Me sneak peeks though this one is for my eyes until it finds a name at least so far. Tomorrow is thanksgiving here in America a holiday that I’m a bit torn about, yes I have much to be thankful for, my family my life the few living friends I have . But I take only a small about of pleasure for this holiday because I don’t like what “Americans” did to get this land. Native Americans are and where some of the most spiritual people on this planet so close to nature and family, one with the heavens and earth and my country slaughtered them put them on reservation and then ” gave” them their land. It’s like if stole your bike and then gave it to you as a birthday present. Kinda crappy. Anyhow. Again don’t get me wrong, I’m all for my family and have many reasons to be thankful I just think that as Americans we should also on this holiday say a pray for the people, history and culture that this country’s forefathers destroyed to claim it for them selfs. Ok enough on that. To all I hope your hearts are full of joy and love and that peace lives in your heart.
Be brave, be kind and love.
I don’t have much to say today, the holidays are a hard time for me so I’ll keep this post locked in its journeys page. I have lost most of my family that was dear to me many of my friends are either dead or far away. But I am thankful for my lived ones. I am thankful to be alive. I’m thankful everyday, much love, Benjamin
11/24/13 I think.. 1:29am
I hate it when I can’t sleep. Slept from 9:30 to 12:30 and now here I am in the wee hours of day/night trolling WP for poets and painters. The broken hearted and yeah well that’s it. I think I took the wrong medicine last night I am usually really good about my pill, you kinda have to be when you take 23 of them a day it’s actually 24 but what ever. The one thing I must say is that currently at 1:34 am my sleeping meds are in full swing do I feel pretty great so to all my friends across the pond we should go dancing lol. —Ramblings of the dead and dying….. My heart breaks as my foot aches….. And oops their goes my hand…. May I have another,sir??? Silence echoes through these halls in the day/night only rain no pain not tonight. But slowly creeping I can see its red light far far off light a steaming freight train. Do flex don’t yawn maybe it’ll pass lay perfectly still like a statute but pray you don’t get stuck. The munching crunching ratcheting bones keep me company on this day/night. The soft blueish glow of technicolor light warming my retina, slowly cooking the back of my brain. Oh!.., I guess nobody told the hand it’s time to wake up, for he keeps dropping the phone, damn lazy hand drops plates, forks, pie he’d drop gravity if he could shaky bastard……..ok enough musings of poetish thoughts about nothing. For those of you who actually read this. Hi, good morning how are you? Well me a bit mad this morning / night whatever the hell you call 1:48 am . Mad as in crazy not angry right… Got it? Cheers
Anyhow much love as always I’m going to convince the right side? Of my brain it’s time to go back to bed, left maybe…? Not sure. Be brave. Be kind..
And love with your heart.
1:42 pm same day 11/24/12
Back from the world of man, safely tucked back in my studio, body broken from pretending I can move about adequately in our fast paced world, hands shaky, legs weak and tired. But my spirit is strong I refuse to give up on this day. Much love, Benjamin
In 2 hrs I’ve been up for a day. It’s strange what the mind does after you’ve been awake for to long. I wanders to a fro, as such dies mine. Thinking of things I have and things I want in my life. My mind wants to run free with the wind, yet my body keeps me planted like a statue. To night my legs and hips fail me, my left arm looses almost all muscle control at less than 45 degrees. I can feel as the symptoms spread tightening the tendons in my shoulders, hips , elbows and wrists and ankles. Like twisting a rubber band around a pencil, tighter and tighter. Somedays I feel like they’ll snap. Those are the days the pains the worse. I write these words in the dead of night so when I’m gone the world will know what it’s like. I have a “no meds” visit with my Neuro on the 27th and I fear the worse. I’ve only been diagnosed a year, something at my age I imagine they call the guessing period. I have more symptoms in line with MSA-P than Parkinson’s but what the hell do I know. I’ll take PD over msa any day. With my family history PD gives me maybe 15 years left. MSA for like 5-8 do you can see my concern. Anyhow theirs my daily demons. Much love to all. May the world be kind and gentle go you all, and you to it.
11/25/12 5:30 AM PST
Well I managed to sleep for a few hours, from 1a-4:30a my body clock I very regulated as PD meds have a very short shelf life in the human body. So by 4:30 my body was screaming at me wake up old %#*%# take your pills. I’m not really that old for anyone new reading this 42 to be exact. Which kind makes me a geezer but not really. If if where the mid century I’d be ancient. Did you know they are thinking of DBS for me, what’s is DBS you may be asking, well, take a drill, cram it down through your head stuff in some wires, connect to a battery and viola I could be in the circus. Put light bulbs in my ears or something fun like that. It’s funny to watch the ” professionals” argue about what’s best, one set things DBS will change the world, and for some it has, others tell me never do this it’s barbaric and uncalled for. Me I guess I’m just along for the ride makes no difference to me. If I do it and it works great less meds, less symptoms. But if it doesn’t then I have a freakin Frankenstein story to tell the world. But here’s the thing about progressive non curable diseases, personal option hear, it’s going to get worse regardless of them drilling a hole in my head so really what’s the point, like the saying goes, ” I need that like I need another hole in my head” lol, lol, lol. I crack me up. Sorry I don’t even know if that’s the right damn quote. But what ever it’s my brain and it made me smirk. Anyhow how people, move along, move along nothing to see here. May the world show you love and maybe even more importantly what to do with it once you have it.
At what point do you call in your chips, wave the white flag and say I’m done. Well today I was reminded that my cards have been folded and my flags at half mass but I’m not quite ready to call it quits, at least not entirely. So finally after almost 2 years of being in agonizing pain everyday my GP says its time to get serious, some pain med I think the kind Dr. House on tv takes. And we had the very hard talk about permanent disability, which do to the very rapid and un-relentless increase in my symptoms has become a very dark cloud I must face. I’ve worked since I was a small boy on my grandparents farm it’s become part of my identity as a man, father and human as wrong as that is, that’s how I was raised. Men work, provide, fix and protect its in our DNA literally. So now I have a ton of emotions surrounding this impending life change that I’m not really sure how to deal with…. I’m thinking dark beer and chocolate cake!!!! So that’s today’s doctors visit. Yay for pain meds, Boo for life change . Terrified about tomorrows Neuro visit because MSA-p has to be a topic of the conversation. I’m not going to go into msa-p google it if your interested but it’s not pretty. It’s kinda like PD but way more brutal kinda like a plane crash it’ll kill ya. Any how. Time for cake. I hope you world has been kind and gentle to all of you today. I wish you all great joy and peace in your lives.
11/27/12 3:45 am pst
No meds of any kind since last night 5 pm— I’m pretty sure my head is going to explode!!! Whole body shakes, pain in every major joint connection, pulse irregular, wiggles like I’ve never had. Balance gone breathing erratic. Wtf not good 6.22 min till I can take pills can’t come soon enough. Can’t type good hands to shaky ill update later.
5:24 am oh dear god help me fuck!!!!!!!!!
So sleeping wasn’t really on the menu. I ordered the waiter came brought me back a side of tired and said I’m sorry sir, but the kitchen is all out of a good nights sleep!!’ at least my coffee tastes fantastic. So the OHSU visit was a bust yeah I still have Parkinson’s, but these new tricks and twitches and pain they have no idea what’s causing then. Suggestion from OHSU: 1# your nuts an it’s all in you head….wtf… Really. #2 Go see a rheumatologist I’ve have ultra sounds on my shoulders, X-rays on my hips and 8 MRI’s already except for my elbows and knees I pretty much know what my insides look like. So I start the process again with my local neurologist. He was the guy that diagnosed me in the first place. So again I’m left with the question Parkinson’s plus/ what??? Pain level in my hips and shoulders is huge this morning 7-8 can’t take any pain meds until later I have things to do once the small humans wake up, any how it’s kinda strange I have a free studio I’ve been working on getting my submissions ready for the show, which I officially dropped off last night!!!! Many people where captivated by the guiding light I was very flattered. Judging happens today I think and I should know in a day or two which place my piece will be hanging at. The reason this show is a big deal is because it’s kinda put on by the whole towns art community. Once the selections have been made they will hang in a selected location that’s part of a huge gallery walk our down town does, it’s pretty exciting. Anyhow so now my studio is empty ish I have 2 pieces older I’m working on and 4 blank panels. Didn’t sell and pieces through the gallery so I’m hoping the show will generate some interest. Any how much love to all.
11/28/12 6:30 pm
What a crappy day, I’m not ready to share the whole story of my day or the details that led up to this day happening but I will when I’m ready. Simply to say, I have decided to go back to my original neurologist and that’s about all I have to say on that subject. I have pt/OT tomorrow and will be having my ROM test, range of motion. It will help show the insurance company that yes I’m more broken than I would care to be.
11/29/12 4:00 am pst
I’m not sure what’s worse the pain or the medicine head from pain pills. The morning is my time, a time of reflection and thought and on these pills which I only took one instead of two my head is so clouded it makes it hard to think. It’s bad enough my hands shake like leaves in the wind but not to be able to express myself if not good. Part of the reason I didn’t fight harder for pain meds is prior to now I felt it was better to feel pain and feel alive than to feel the cloud of pills. But I have to say I slept for six hrs and that was a very nice thing. Anyhow I need coffee and to clear my head. Much love. Today is PT and OT so I’ll be in and out. Plus I have to do the texturing ahead of time for the demo on Saturday, busy boy.
Texture boards are drying, I’m trying desperately not to take my pain pills yet. Pt kinda kicked my ass today. Range of motion tests do basically I push it until it hurts which is a needed evil. But my hips hurt like crazy!!! Today I managed to totally piss off a fellow blogger got “unfollowed” kind of a bitter sweet pill. I hate fake/friends in real life so fuck’m at this level. I mean really I could wake up immobile tomorrow I don’t have time for the drama. But obviously it upset me because I’m writing about it. It was a person I thought was kind to me someone in the blogosphere I kinda looked up too. So ya ouchies a little. But enough of that. Demo show is one day away and I’m nervous for all the right reasons, the awards show/reception for the gallery is on the 5th so yay arty things to do that actually get me out if the house. Woot. Ok people have a great day take care and be safe.
11/30/12 5:00 am
2 hrs of sleep and amazingly I’m feeling ok. Shaky hands legs tight/ stiff and sore. But my heart is light and my mind clear enough, yesterday I had a really hard time with depression because of some things that happened, but one cannot control others, so I will move on.
Life is short, sorry I just took my 5 am pills and my brain is fuzzing out. I’m very excited to paint today for my self I need to release some of these feeling. Drama from doctors, drama from WP which is dumb I guess I’m not over what happened. If I didn’t care so much about people then it wouldn’t matter but it does. And I guess I just need to work through it. Never in my life ever have I intentionally tried to hurt someone’s feelings. But I’m human I make mistakes, I have asked for forgiveness and I guess I just need to leave it at that. Anyhow. Today will be a great day because I believe it to be. Until later I bid you adieu.
Much love Benjamin
Demo day!!!!! Woot!!!
Today I’m so excited. Yesterday was tough I slept on and off all day long, fatigue kicked my ass. After about 8:30 am my pills decided not to work. PD meds can be fickle. Today I’m not takin any crap from my PD even if I feel like hell.
12/2/12 1:25 pm pst
It’s been a tough day, work up late in cold sweats and body frozen in time, muscles with their death grip trying to rip my bones in two. Some how my body clock let me sleep past 5 am which is my first pill set, as of 1pm I’ve managed to get back on track but at a cost, sinemet or carbidopa/levadopa in most PWP can cause dyskinesia which is the “wiggles” and since I have such great pain in my joints the dyskinesia kicks my butt because of the motion it causes. Anyhow been doing laundry and playing good boy around the house, tends to keep me out of trouble. Tomorrow is Pt/OT/ speech then after unless I’m spent I’ll go help out the gallery a bit. For know that all I’ve got. Pain level 7-8 so I’m going to lay down for a while. Until later, be kind to each other.
12/3/12 5:00 am
The morning has found me once again, in a quiet house, with rain and pain my hips are so fucking broken these days. Each step is torturous pain, and I find my depression settling in for a long winters ride. So many things to say yet no time to say them, I feel socially unaccepted as an artists in this town. I sometimes wonder if the art world has lost its passion it’s madness for creation and drive for new things ideas. Sure I’m no pollock or Picasso but I don’t think I suck as a painter? Just full of self doubt these days I want/need so desperately to feel alive yet in every corner I feel like I’ve stumbled in the dark somehow. Anyhow blah blah time for pills so I’ll stop my pity party put my big boy pants on and count my blessings. To all who travel down my journey with me be brave, be bold and love.
12/4/12??? 1:07AM pst
Nothing like waking up in the middle of the night wondering where the hell am I.
This again is why I hate pain medicine. I had a very extensive pt session yesterday so by the time the evening rolled around I was a slow shuffling old man, I thought ok after my 8pm PD pills I’ll take my recommended dose of pain meds. Well they worked knocked the daylight right out of me. So since my body can’t usually sleep more than a few hrs at a time here I am awake, in a stupid fog wondering what the hell. But hey my hips don’t hurt…hands are shaky as hell and my left foot is locked in a dystonic spasm, but what ever lol!!
Ahh neurological disorders good times, good times….. That is sarcasm….more later when I know what the heck I’m talking about. Peace be with you.
4:06 AM update same day.
I know it’s going to be a good day when I have paint on my hands before I have clothes on my body.
***started a journeys 2 page, was tired of scrolling down to the bottom..