Fly so high like Peter Pan.. Reach for the Sky like a Rocket Man..
My name is David Sangster and I was diagnosed with Parkinson’s Disease when I was just 29. Today I turned 39 — a lot of pills, foil wrappers, appointments and worry later .. I carry on. This is a reflective piece with a ridiculous mix of nostaligia, lycical references, some realism and reflection (what else would you really expect by someone who is suffering from his first symptoms of a ‘mid life crisis’ and an open admittance that this year has been a ‘mixed bag’.. or as my mate only this yesterday summed up with his Chorley charm and grace his Parkinson’s (below). Michael is one of the first people I ever spoke to with Parkinson’s and he is completely right — PD is a shit show and I refuse to sugar coat it any longer.. it is what it is.
The reality is I have as long as my Deep Brain Stimulation surgery (thank f**k I got that in before the global pandemic), an unshakeable motivation and a deep desire to keep thumping passionately my piano keys WILL carry me — as to keep my advancing PD at a dull roar when I play.
You see, music has aways been a big part of my day for as long as I can remember. If it was in my DNA to develop an incurable brain disease I am certain that I was gifted with a deep love and obsession of music before it arrived in my life as to equip and help me cope as best I could for an uncertain future with the illness.. this I truly believe.
I am not massively into looking back but if I did then.. since 2011 my diagnosis of Parkinson’s was heartbreaking and irreprepably changed my course, my plannned route, our planned journey. but you have to ‘crack on’.. you just do.. the alternative is to sit on the sidelines.. but naturally you will just sit there and watch the wheels go round and round.. it will make you cynical, bitter and critical of those who you once stood with .. pushing the sky away together but now your push turns to shove as you sit on the curb feeling sorry for yourself. Nobody said it was easy, because life doesn’t reward without the shit show.
In February this year I hopped on a train to London for a job interview at Parkinson’s UK with my mate Annie who came for moral support (cheers mate!) and I got the job and I absolutely love it, particularly working with the creative, transformative and engagement areas — helping an increasing number of staff at the charity achieve their goals. I am a team player and enjoy collaborative approaches to pretty much everything put to me since I started there. I helped to make the TV ad and I am currently working to make World Parkinson’s Day 2021 one to remember.
Before I lose the thread and purpose of this blog — I should just get to the point. I see my advocacy as a vocation (I hope you see all know that) — family, making music and annoying Parkinson’s — I have no interest in anything else for each have their own unique rewards.
“When I am no longer even a memory, just a name, I hope my voice may perpetuate the great work of my life.” (Florence Nightingale)
The reality is I have as long as my DBS, motivation and desire will take me — as to keep my advancing PD at a dull roar. Those who know me well enough know for a fact that my advocacy, interactions with other PWP, and also my creative application to the mix, is my main concern pretty much.. I want to take it as far as I can — life and living it.
Ok, ok the point of this ‘birthday blog’ is that I have learned so much the past 39 years.. of course I have.. duh! The past 15 have been the best pick — with Jane squeezing my hand through everything good and bad. 10 of these have been lived with Evelyn and George .. I have everything any man in his right mind could have ever want or wish for. Truly. If you are reading this thinking, he is full of shit because how can he miss out the bit about his Parkinson’s Disease? ‘I wouldn’t wish for that’ and yes, you’d be right.. but it has been a part of my life since I was 29 and that is like half of my adult life pretty much.
Parkinson’s is there all day, every day. It manifests in almost everything I physically do. It wants to stop me in my tracks, slow me down, hold me up and keep me back. It’s main aim is to take away my independence, my freedom to enjoy what many take for granted — to keep moving. Humans like to move and Parkinson’s is a movement disorder. It is not a disease of the muscles or the body as such — it is a brain disease.. irreversable — end game is to do a ‘pac man’ on your millions of brain cells one by one (the house will ineveitably win, of course it will) — this is not a fairytale.. Peter Pan did grow up. People get sick and they do die. Fact.
OK.. OK! I did it again.. I’m dribbling on again.. OK.. the point is that Parkinson’s (like life itself) has taught me so much..
A man I once knew once said that PD is kind of like a gift,
One that keeps.. on .. giving.
Because it’s most likely something that will stay with you as long as you are living..
That’s what PD has taught me
It taught me not to waste too much time in the past, looking back
But instead to hold dear, to value more the things that are very much still here
It’s taught me what fear really is, that regret isn’t really a thing,
I’d rather focus on today, at this very moment, with my wife and children and to look forwards.. to see what tomorrow might bring.
That’s what PD has taught me.
It’s taught me that there’s no such thing as wealth, that the only real thing of any value in this life ones good health
That’s what PD has taught me.
Its’ taught me to see things more clearly,
To take stock of this life
Not to keep hanging on to what is long gone.
It’s taught me that the ‘bigger, the better, more finer things in life are not, in any way, what really.. really matters.
That’s what pd has taught me
It’s taught me that relationships, people, family and friends are the only things to value in ones existence on this earth
It’s taught me the meaning of frustration
To get over myself — to crack on and not to spend too much time wallowing in my own self pity
Just because of my irreversible physical condition..
Doesn’t mean I should give up on life, myself or my mission
It’s taught me how to bide my time, to not always be so impatient
To rest when i’m down
But to fight when I rise
To face up to my reality, look it straight in the eye
That’s what PD has taught me
You see, the moment you are diagnosed
When the life you had then, lies in tatters, unravelled on the ground
You begin a new journey, the one you hadn’t planned or could ever have imagined
On a road less travelled, but still… onwards and upwards
Some days .. It will steal away your thunder
It will knock you off your feet
Why us? why me? This curse, this god awful disease?
And then , of course , you’ll click and compare, see your struggle in others..,
But dare to look beyond the shakes, hold your curious gaze for just a little longer
Behind the disco dancing and abundance of sad looking faces
You’ll see how they cope and try to embrace it, make do — its life in slow motion
Some see it as one big challenge.. to carry on fighting ..keep moving, keep on living.
That IS what PD has taught me.
It’s taught me that one day in the future, maybe months, but probably years
You will learn to accept it for what it really is — a glass half empty or full (drink it up, it is all there is!)
It’s taught me that friendship and family (AND MUSIC) are all you really need.
It taught me how to do some good,
To share my journey, my travels with others
To keep searching..
To turn the darkness into light
To guide the way for the others
Thats what Parkinson’s has taught me.
PS : I am no fool..doubters / haters..(had my fair but to be expected share of critical cretins this year) please go look in the mirror, look up or around — oh please 🙄 . Those who I care about and find reading this maybe difficult to swallow or believe (this is about me, not you — and I know you and you me) — to remain in this frame of mind is never easy to sustain everyday (for anyone, I know) but I genuinely am a happy guy with a song in his heart a ‘disco beat’ in his step. Long may both continue! — our friendship and the music — ya know who ya are :)