- Sex: M
- Data Quality: 2 stars
- ALS: 5 yrs
- Wheelchair Feeding tube
- Bulbar: mild
- Arms: moderate
- Chest: none
- Legs: moderate
- Male, 43 years
- Wells, Somerset
- Primary Condition
- First symptom
Hi! Patrick here! I was diagnosed in March '08. I have a wonderful partner and two great boys aged 7 and 3 and a baby girl aged 1. We are getting on with living our lives as best we can. We got married summer 08. I used to paint, and some of my recent pictures are below. I am writing a novel and am a dedicated amateur neurologist
My latest work on ALS aetiology is here;
'An already inconvenient situation was made considerably worse by the arrival of a giant squid.'
'Pausing briefly the tank allows the cleaner birds to remove the parasites that infest its bodywork.'
'Though thousands hatch and make it to the sea, only a tiny few will make it back here as adults to spawn.
'Revenge of the whales.'
'The calf stays close to it's mother for the first year to avoid predators.'
Heres a link to more paintings;
my boys on my land rover.
me and Kath at Fishguard last year
Here is a poem i wrote for the kids;
Poem for a child
or, why its ok that i'm dead.
The things I've seen with these eyes, he said
As he sat there in the rain.
Well I saw things with mine as well
And my tale shall tell the same.
On a Severn morning long ago
I strolled through glitter'd dew
The sun's low rays caught jewell'd webs
With which the fields were strew
I knew then as I know now
Of life's sharp brilliant glow
that time and place and happenchance
can piercing memory grow.
Since then I've seen the jewell'd webs
In many a different place
Seen dewy gorse upon the Lleyn
Felt wind upon my face.
I've seen heather and the snaggled rocks
Paint Tryfan's granite slopes
And loved the pools and shatter'd cliffs
That crust the northern coast.
Book in hand I've climbed and swam
I've heard the conker's crack.
i've ridden trains and flown a plane
para-chute upon my back.
The furnace'd heat of desert sun
Has burned my English skin.
As I stood in wonder, jaw agape
Upon a canyon's rim.
Leatherbacks and washed up wrack
And glaciers I've seen
Cathedrals far and Spanish bars
And alpine pastures green
Sailing boats have plunged and raced
Over blue and foaming seas
The heaving deck beneath my feet
The thwart beneath my knees.
I've travelled half the world about
And seen a whale's jaw
I've seen volcanos spit and shout
Beheld a black sand shore
I've hedgerow trees and bumble bees
And flowing weasels seen
And breathed the smell of fresh cut grass
Upon a village green.
And books, oh books, what utter joy
Their pages held for me
A magic world most richly wove
I opened up to see.
Paintings, words and cardboard men
Flowed from these hands of mine.
An intoxicating drunken rush
That near my life defined.
I loved it then and love it now
And if had my time again.
Would travel down the self same path
And do it all again.
I've held my children one two three
As they laughed and grew.
Every moment treasured deep
Each day a pleasure new.
A good film watched but never finished
My mother said to me
I nodded then but now I know
How true this is for me.
One sight above all others though
I to my heart hold near
That of the laughing loving face
Of my Kathy dear
Her crooked smile has my world lit
From when her I first saw.
I glance now at the ring I took
When I made her mine in law
As I look down my watch hangs loose
The bones show through the skin.
The flesh is sunk, the muscle gone
Each hand is gaunt and thin.
I smile and laugh when now I think
How others see this change
They think it wrong and desperate sad
My laughter to them strange
The things I've seen the things I've done
Could fully two lives fill
Content am I as now I come
To pay the butcher's bill
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