Good morning, afternoon and evening.  I hope he day found has treated you well. Yesterday was the “big visit” with my new peeps at OHSU.  Oregon health Science university,  for those who didn’t know. It was a really good, long visit. Days like yesterday leave me weak for days. The stress of confronting my disability head on like that can be ..no…. is exhausting  and honestly a very disturbing thing to go through.

So you may ask or be  wondering what the deal is? Well here goes. I’m going to be taking my blood pressure twice a day. Sitting and standing,  why? Because where are evil monster of the neurological world lurking.  MSA: Multiple System Atrophy or and Parkinson’s Plus.  I’ve been told that’s why I’d been having troubles cognitively and why my balance,fatigue and  blood pressure have been so wacky. Do I have MSA? ?? Don’t know,  when will I?? Don’t know. More tests.? Yes. Unfortunately lots of Neuro disorders are untreatable and not really recognized until they are in full swing. So, I’m going to simply live and make choices as if the next day is my last. Yes I’m realistic that I’m probably royally F’d but I’m going to keep it positive until I can’t.  The next step either way is DBS or deep brain stimulation, basically a pace maker for the brain. It will help give me some relief from the side effects of the medication used to hold back the pd. So yeah. Lots to think about. Do I want brain surgery,  how long do I really want to live like this? Look,  Parkinson’s disease robs people of their speech, movement and cognitive abilities I hate to say it but I really understand Robin Williams choice now. Far better than before. I’ve lost my wife,job,kids, lover and self worth to this disease and all I have left is my love of my son and the gift of paint and prose. But when that gets taken from me. I don’t know…… anyhow  that’s what’s up with the doctor. I love and appreciate each and everyone who has been with me on this journey.  It’s been pretty crazy right? We’ve been all over Europe twice, Canada more times than I can remember.  I’ve met some of the most kind hearted beautiful people I’ve known in my life on this journey. Thank you. Thank you for being there for me when so many of the people I thought would be the ones to complete this journey with me have gone away. 😦 

Right then, chin up. Dry those eyes. Lots to do today. I’ve got bags to pack and rest to take before camping. This weekend. Know this, wherever you are and whatever you’re doing know that you are loved. That you are loved, good enough, strong enough and smart enough to get anything you want from this life. Don’t live in fear as I’ve done so often, fear is a lie. Don’t waste time fearing what hasn’t happened, trust me.  It’s not worth it.

Big hugs.


8 thoughts on “Tired 

  1. Ben, I’m thinking so many positive thoughts for you and hoping it’ll make a difference on your side of the world. have fun camping and being one with nature. I hope you don’t mind–i feel like quoting your beautiful quote at the end about being loved on my post today.

    Liked by 1 person

  2. Dearest Ben,

    I just wanted to say in response to the part of your post that says “Know this, wherever you are and whatever you’re doing, know that you are loved.” that the same goes for you too—absolutely and unequivocally.

    You are so, very loved. And what’s more; the impact that you’ve had—and will continue to have—on not only my life, but the lives of everyone else your words have touched so substantially, is a gift that you should be deeply proud of giving us.

    We do thank you for it most sincerely.

    Despite the many miles that there are between us, no matter what comes next—or where your life may take you—you will always have a friend in me, and I will always be here to the best of my ability, should you ever be in need of anything.

    I’m sorry that this is hanging over your head after everything that you’ve both fought through and overcome already.

    I so wish that I could take all of that weight off of your shoulders my friend—I would do it in a heartbeat.

    I’m with you in both thought and heart.

    Big hugs to you Ben.

    Your friend, always.
    ─ Katie

    Liked by 1 person

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