Makes a great story……Until you have to live it.

How perspectives change. For the longest time I thought I was living my dream. In a way I guess I was, I raised a beautiful son and daughter. Two humans whom I would gladly give my life for. I worked 60-80 hrs a week a for 20 years. Thought I was doing everything I was supposed to. Worked, provided, guided, taught and encouraged.
Then in January of 2010 I woke up after a busy holiday season as a retail executive and found that morning I could barely move. Imagine every muscle in you body feeling like it had been run over by the local college football team. This went on for a few weeks until it got so hard to get out of bed that I simply couldn’t. Then I started to worry. I’ve always been very body aware and this new feeling was just that 40 years on the planet and I’d put my body through just about everything you can imagine but this feeling was different. I couldn’t make it go away and it felt deeper than any pain or stiffness I every experienced….
I knew then it was time to so see “The Doctor” que dramatic music 😉
Little did I know then but I was about to embark on the most brutal emotional and physical battle of my life…. The diagnosis of Parkinson’s disease.

A year a half later, mid 2011 I’m still in stage 8-9 pain and nobody can figure out why? The physio people, nor pain specialist my GP is stumped the pain clinic at the “big” hospital is clueless, kind, but clueless. Then comes then pin test. Yes I mean pin, not pen. they take this really super sharp needle and start poking specific body parts. So I play along, at this point I’ve had every test known to man and dog alike and people are starting to get frustrated, myself included. I close my eyes and let the pain guy know I’m ready. waiting………….. oh! I feel that!!!! as he pokes my knee.” Pain?” Dr.French asks…..No… just noticed the pressure. Meanwhile he’s been asking me “can you feel that?” “No” has been the answer on loop until then. At this point I open my eyes to a very worried looking doctor. I have to kid of giggle at this point because I’ve been through so many tests and tried so, so many dead end pills and gain so much weight, honestly I don’t give a shit, I just want to know what up with me?? As it turns out he’d gone all the way up to the top of my head and the only place I felt real pain was this one square inch around my left knee. Me I’m thinking “Hell YES SUPER POWERS are real!! Doc on the other hand says I need to go see a Neurologist ASAP and schedules an appointment with a local (Salem,Oregon) nuero guy. Docs and insurance people being what they are I waited a long time for my “emergency” appointment only to meet with the most curious Chinese doctor and his assistant. I show up, do the meet and greet, re-tell my story, which at this point I can recite backwards in Latin to monkeys as I’ve told it soooooo many times. I do what I now know is a standard PD test, I pinch my fingers, I walk, I turn around, look up, down and all around. By this point I’m a little concerned as the doc and is minion are conversing in soft tones and looking kind of concerned as well. Examination done, notes taken and everybody left wondering what’s up with Benjamin. Mind you by this time its been A YEAR AN A HALF, sheer pain, isolation and sleeping on the couch as by this time I’ve developed a rather harsh case of RLS which is super common in PD. Also my pain level which is growing weekly is yet to be addressed as everybody is now concerned with the fact that I don’t have diabetes yet I’ve a very pronounced case of peripheral neuropath, rigidity, slowness and growing instability. Hmmmmmmmm, what could it be? A couple of weeks later I return to the Dr. and he and his assistant look very serious. We sit, do the test again. They converse and then look at me in a most serious way, the kind of way only a Dr can look at you when they’ve really heavy shit to say, BTW, good on all the Dr out there, I seriously don’t want your job! Anyhow they deliver the news, he thinks I have PD and wants me to take these pills ” carbidopa-levodopa” or Sinemet. At tis point I’ve seriously taken so many scripts I don’t care, one more F’ing pill in the diet isn’t going to matter I think. I do the same routine, go to the pharmacy, do the wait thing,, get pills and go home. I’ve an eversion to taking new meds at night, wrong, right , I don’t know and don’t care, new meds at night = bad news. Try waking up in the middle of the night with a life ending reaction or side effect.. not fun.. I do the research prior to taking this new med and find that one of two things are going to happen. Either nothing except an upset tummy or I’ll immediately start to feel better. Well you guessed it the next morning I woke broken and feeling like I,d been hit by an airplane during my sleep, which by the way at this point is maybe an our or two a night because of the pain. I find my coffee and “new” pills and get busy. ONE PILL EVERY SIX HOURS OR AS NEEDED….. okay, I think lets play guinie pig away, well as you can imagine much to my displeasure about 1/2 hr later my back stops seizing and my hips loosen up and IM FACED WITH THE REALITY that I have PD.
TBC…………. Thanks for letting me share. It was a long hard night and I really needed to write it out.
Remember to please always Be Brave, Be Bold and Thrive in the life you have.


27 thoughts on “Makes a great story……Until you have to live it.

  1. Thanks for writing all of this out Ben. I really like to read through some of the things that you’ve been through (which is an unbelievable amount of stuff!). I so wish that you weren’t in so much pain, that by itself is incredibly difficult, but to have PD and everything that comes with it on top of it is unfathomable – until you have to live it of course. I sure wish that you didn’t though. You go through so much on a daily basis. It’s so unfair.
    – Big hugs to you, thanks for taking the time to share with us.
    – Katie xx


  2. Oh, dear Lord. Guess all of us have to deal with our share of health issues… almost died last december or so a doctor told me. A side effect of a pill and too much stress combined. One of my depression pills produces tremors so I’m learning to leave with them. I know you’ve been to hell and back, but you’re NOT alone. Here we are! Here I am! If there is anything I can do, just yell. P.S. Your latest paintings are spectacular and YES! December has the “particularity” of trigging memories and emotions. Used to love it, but not anymore! It saddens me to no end… Tight hug, B.


  3. Wow ! Hi Benjamin ! Sorry to read about your PD. Initially I was diagnosed with PD, then it was genetic and the latest Lewis Sumner. Had all the tests inc. THE PIN !. None of the treatments worked, but the side effects did !! Got to live with it ! Good luck. Ralph 😀


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