Daily Journal’s back Alive

The following entries are a daily recording of my journey with young onset Parkinson’s disease. I don’t spell check, format, edit my thoughts or words so if harsh language or people being blunt isn’t your thing then by all means go away 😉 I will not be discussing or journaling my private life in these pages as those are saved for my eyes and those whom I can trust implicitly. I do how ever feel it’s important for the people who read this later after I’m gone to understand what it’s like to really live with Parkinson’s disease these Are all the things a patient such as myself could never say in the measly 45 min twice a year I get with my specialist team
So here we are again, it’s good to see your still here checking up on me. Life I tell ya has been challenging me in ways I can’t even explain. Lessons of what it means to love and receive love. What it means to come to terms with loosing dreams and finding new ones. Challenges in dealing with mental health both mine and others. My Parkinson’s has been progressing like what feels a freight train and since there is no predictable track for PD I’ve know idea if this is fast or slow. Things haven’t been that great lately there’s been a lot of bickering at home and for me that’s the worst. My home is the one place I’m supposed to feel safe and honestly I don’t. Life feels so unpredictable right know like the floor could just drop away at anytime. That my friends is why I’ve not been painting. I do however have some new pieces I’ve been working on but nothing like the amount I used to paint. I miss the security that my old life had and I love the vitality my new life has I just don’t know how to make this new foundation solid, hopefully in time this ship will right its self otherwise I fear this will be the end. I’ve no strength left for major sudden change the PD has taken most of my day to day planning skills completely. Balance a checkbook or pay bills, follow through on just about anything takes an army of people to remind or make me get shit done. I’ve thought more about death and suicide in the last year than ever before in my life. That alone tells me I’m tired, bc suicide isn’t a thing I’m into but there are days when being awake, conscious or alive isn’t a thing I’m very into either but still each day I wake, try and smile lol PD joke and start my day. Anyhow it’s nice to write here again it feels like home more familiar than anything else right now (today). This next 18 month I’m going to be focusing on the Paint and the Book. For now I bid any and all a good day/night. Please remember the words you use today can and will determine the things that happen tomorrow.
Over and out.

**Sneak peak of my current work in progress.


5 thoughts on “Daily Journal’s back Alive

  1. Dear Ben
    I’ve been in hospital myself this week (home now) with yet another spinal repair op. This has been an ongoing thing since my accident years and years back, leaving me with a painful and deteriorating condition that now has me in a wheelchair and requires a couple of stalwart carers to look after me. Fortunately, I took my father’s advice when I was a young man and insured myself for all health eventualities, never dreaming that such insurance would ever be needed.

    I know what the toil of getting through each day is like and the consequent build up of what I term the ’emotional morass’. Fortunately, I do not have any of the absolutely awful cognitive malfunctions that you do, my friend. Whilst your outlet has been in art, mine has been in writing. The creation of whole imaginative worlds has kept me sane in many ways and also provided a necessary income. Often, I have imagined stepping out of my wretched body into one of these worlds, clad in a more functional covering, of course.

    What I am trying to say to you is that we are not this mind that hovers between an analysis of the past and a desperate supposition of the future. We are not this body which is all too delicate and time consuming. We are not even these emotions that do their best to overcome our sensibilities. We are so much more than all these ‘coverings’ if you like. No matter the sufferings, no matter the course of our lives, we are those indefinable golden creatures that seek to better themselves. It is not possible to progress anywhere but on the earthly realm in a body. All the Heavens, the Shangri-La’s, the realms of whatever spiritual value we hold true are simply rest areas. So if our journey here is difficult, nigh on impossible, it can only be what we have to go through for evolution’s sake. I have thought about cutting mine short many a time. But then something or someone has touched me in a way that made my thoughts seem stupid and I have stopped dragging myself through the dirt and looked up to the skies. For whatever a day brings, there is still the comfort of small sections of it. There is still beauty to feast one’s eyes upon; there is still means of creative expression somehow, even in dreams. There is still love expressed between friends and family, still humour and still kindness. I wish you the best of all these qualities and a fervent wish that you won’t leave us so soon.

    Liked by 1 person

    • Moz, I’m so sorry to hear about your surgery I do hope that your recovery has been smooth and pain free. And thank you my dear friend this last year has taken it’s toll on my body,heart and mind. The real stress of this life and the events of the year many times have challenged my will to keep up the fight. The knowledge that I’m only going to get worse is so daunting at times. The pain in this physical body mixed with the cognitive impairment…..grrrrr. Any how today is another day and I’m still here. I’m not done yet I’ve more words and paint for the world and honestly I’d like to not leave it such a mess. I hope to hear your wise words again my friend. Thank you from the bottom of my heart for your gift of understanding, it gives me hope.


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