Once upon time in a land far away I didn’t have a care in the world… Ha. Right, me not sensitive 😂😂😂 I’ve always been sensitive who I’m a kidding.
“so many questions.”
acrylic and ink on masonite.
2012. Parkinson’s series.
SCIENCE TIME :101
Stage three is a tad ambiguous so I’ve included a list of symptoms. Keep in mind that in stage three things get silly (not a medical term 😂) the symptoms are often noticeable and strong being made worse by physical and emotional stress. Though often in this stage symptoms vary greatly. List of symptoms
And finally the last stages
The kicker with Parkinson’s disease is that a person can can often be in any stage for any amount of time or skip a stage at random. I could have 1 day or 100 years left on this planet lol. Sadly no cure exists for Parkinson’s disease. To be honest from a young man’s perspective MY OWN diagnosed at 41 currently 46 its a fairly terrifing disorder. It changes you, physically, emotionally and cognitively. It often alienates friends and loved ones. It has a divorce rate of 85% *those married prior to diagnosis* and well is simply pretty brutal. So please help spread awareness. Parkinson’s disease can happen to anyone at any age at any time.
Always B. 2016 “A life in progress.”
Sneak peek at Pearls of wisdom in a sea of fire. Coming soon
Good morning,afternoon and evening which ever it may be for you. I’d like to report in that all is well and feel like a million dollars. But in truth I’m tired, very tired and my body is very sore and has been for a week. Sore to the point where my tendons feel stiff like bone and the tension pulling them feels as though it will rip them from the very bone they are attached to. Yes, that kind of pain. Lol. But it’s okay right ? Everyday has its own set of challenges and obstacles to observe and concore. To I sit in the cold and rain, dark and wind of the morning thinking of my life. This time of year has a way of making one reflect on lives lived and things gone by. This year I must say a feel pensive detachment from the season. I’m still waiting to confirm that cancer isn’t a factor in my life and as I wait , I feel my body aching and my throat tighten with each passing day. The weight still dropping, mean while I prance around pretending that everything is okay.
It’s been hard this year to handle the changes as they come. I’ve failed once already this year at life as change took me by surprise not once but twice. But I digress the point is never to live in the PST but to learn from and move forward. Now does that mean we move forward alone or with others ? Who’s to say really, I’ve found that life, for me, is far to complicated to decern and as Parkinson’s destroys my ability to separate perceived fact from fiction I find these days I’m doubtful of every choice I make for the fear that I’ve make the wrong choice lingers. Blue or green, fish or chicken. Cable or electricity. All of which I’m finding I see only in shades of muddy grey. You see it shakes the very foundation of a persons soul when they are tossed aside like last weeks newspaper, old news, used, read, learned and unwanted. Be it from friends,lovers,family or stranges alike. We all need to feel validated and trusted.
Well…… Apparently I’m going to talk briefly about many things bouncing around in my head today. I feel like crap, I wish I had a more poetic way to say it. I’m sure I could one but the point would be lost in flowery words. Simply, I’m in pain.7-8 my shoulders have little range of motion, my hips cam barely sustain the pain to keep me upright and my balance sucks. Please understand there is NOTHING anyone can do. This IS PARKINSONS DISEASE. See Dr’s don’t really tell you what it’s going to be like because PD is different for everyone. Words like, stiffness,rigidity,cognitive loss, positional instablity,dementia,distonic cramps, dyskinesia. Normal people don’t know what to associate these words to, nor did I at first…. Honestly they don’t mean shit until you experience them with a neurological disorder. Imagine two cars, these are the messages your brain want to send to your face , one says smile,the others says,laugh. Well Parkinson’s disease derails those cars on their way. The car saying laugh made it just fine, but the car saying smile ended up backing into the pain center and sent stage 9 waves of pain down your foot making your to s feel like they are on fire from electricity. So you need up with a face that isn’t smiling and ends up looking a bit pained as a it laughs,but no smile, because remember one of those cars made it to its destination. So you get it, messed up brain signals.oh the joy lol.
Right then today. Ot and PT here in Portland Oregon then back home, clean, paint and sleep. I’m starting off this week not feeling well as this last Saturday and Sunday were very bad pain days, stiffness,rigidity,slow. So starting the week not feeling 100% can be tricky. Either I’ll gain strength from the activities of the day and week or it will kick my ass and make my symptoms worse. Sadly there is no real way of knowing what my bodies reaction will be. On to happier news I finished a small piece ..
Well sadly the last two hrs of this F’ing post was deleted somehow.probably me being a dork. But I’m tired. I’m home back from OHSU, goodday and goodnight. I’ve new paintings to show, so I’ll be back.
Good morning. It’s been roughly two years since I’ve done any real physical therapy. Sure I get around pretty good with my cane most of the time and I’m physically capable as most things human males can be, I just tend to over do it a bit. Today I go see the best of the best, in Parkinson’s physical therapy, at least in my area. 8:30a pt 9:30a ot 😬these guys are gonna destroy me today lol. See, the thing is. These guys don’t know me from Adam, so today is going to be all bout baseline testing. Which in simple terms, they say GO!!! Then I do whatever test as fast and as hard as I can…..sound familiar.. Don’t smile 😂😂😂 seriously though, it’s a long painful process in figureing out what this body needs since PD has a habit of changing rapidly,then not changing for years.
So my little freak out with katelyn was a prime example of a shift, meds not balanced with body/mind needs coupled with lack of support and over stressed. We were a time bomb waiting to go off and didn’t even know it. Oh well. Live,love,learn. It was good to live a little more before the serious work of staying alive continued. These days I don’t spend my time rushing to and fro handling everybody else’s business. I stay home, water and replant the gardens in the mornings, paint in the afternoons, nap early evening and then cook with friends and family in the evenings. See I’m not allowed to cook by myself. 😓😓😓 the first night I came home in July (long sad story) I tried to make some rice. Managed to not burn down the house but did manage to kill one nice pan and server thousand grains of rice. Since then the rule is. I stay in the kitchen when I’m cooking or I don’t cook alone. PERIOD!
I’ve been up since around 3a I tend to not sleep well at others homes, even though where I’m staying in Portland is perfect. Best friends from kiddom have a home here. It makes it easier to do medical stuff in town when I can come up and stay the night.
Anyhow I said I’d start writing about PD daily or try at least.
**scale 1-10 1= no to little pain and discomfort 10=ER time.
overall physical discomfort: 6-7
** so if 5 is my normal level of ouch, which is half way between I feel great (1)and take me to the ER(10). Today is a 6-7 my pain level is high, very stiff,rigid and un balanced. lol. story of my life. 😂😜😂. Anyhow hopefully that makes sence. most people go to the Dr. in stage 5-6 pain level i start my days in more pain than people (normal) ppl live with. i think most survivors of chronicle illness do, but i dont honestly know. Example: lastnight I had to ask someone to go to the store for me because my right hip was locked up so tight I couldn’t walk that far. Parkinson’s disease is fickle and often changes symptom types during the day. Right then its thursday so hang in there, one more day of the work week then you can go play.
Cheers and much love.
live, love, laugh. its a shorter ride than you think.
It rained last night and washed the last bits of you away.
the gardens have come back after the wrath and destruction of your love.
the birds have come home and winds sing a diffrent somg these days.
one of support and friendship.
one born years ago, destined in some way to become part of this story.
why, how and now?
I could never dare to say…..
but the rains came today and washed the last of you away…..
i am me, he and we. I am stronger than my demons.
more smart than the obtrusive thoughts that used to plague
I too remember the days you slept away
while i guided 1/2 of your flesh and bones….
Not my job, nor should it ever have been…
I am whole, I am here and I am free to live as I see fit.
my love, my loves.fear not as
i crumble into the sea, as you watch me quake and shake my way through the bad days.
these bones are tired so tired…
yet this heart and mind so full of passion to live,love and thrive.
The rains came today and washed the last bits of you away… sad really the way things parted.
but without this my dear, my life would have never really started.
I’ve found my shiny, my glittering heart, my once in a life time whom now ive met twice.
Sometimes the universe remembers it’s nice.
but alass i must pray, that here i will stay.
for here i am wanted, a fresh start everyday.
so this my dear friends is where i shall play
for all of my years and one extra day.