Madryn
Madryn
Sex: M
Data Quality: 2 stars
ALS: 4 yrs
Wheelchair Feeding tube
Bulbar: mild
Arms: moderate
Chest: none
Legs: moderate
Madryn
Male, 42 years
Wells, Somerset
Primary Condition
ALS
First symptom
Jul 2007
Diagnosis
Mar 2008

About Madryn

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 Patrick

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Member since: Apr 28, 2008 Last Login May 26, 2012

More About Madryn

My latest work on ALS aetiology is here;

Leaky roof model for ALS



'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;

http://picasaweb.google.com/coedcaemaenhir/Paintings?feat=directlink

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