Living with Friedreich's Ataxia Intro

13/6/16 : Time grinds on and as I've accidentally deleted my old web intro, so I might as well do another more upto date one.
So, where am I now?

For the past few years definitely, I'm experiencing more of the mental and physical terrors which the original diagnosis of F.A promised.
For me, F.A equates to being slowly buried alive, a "living" bystander at your own funeral!

I remember the twelve year version of myself going to an FA social in Dublin, and being nervously appalled that these twisted, deformed and hard to understand people could be me one day.

All these years later that vision has certainly materialised!

I marvel of what people go through, physically and mentally every day, the often unacknowledged warriors battling daily through some of life's shadier areas

I can never reconcile, how so many people seem to be so lazily eager to be in constant contact with dead people and yet unashamedly reinterpret their old rantings on the currently living.

I think this will be one of the major objectives of this website, to present an intensely personal site which has no medical links and does not sickeningly scream about how I get through everyday with the help of jesus (deliberate small j).

I invite you to look at my blogs and see for yourself my thoughts and opinions about what "life" and "living" have changed; or better said ; been distilled as a result of my own particular journey.

Whether or not you agree with my abuser opinions or not is totally irrelevant to me. I absolutely espouse un-curtailed free speech!

Apologies in advance for any spelling or grammar mistakes. For years I had no help with this site at all, bar my two clumsy index fingers

This site has been long neglected, due to a heady combination of deadening fingers and the shear frustration of sometimes taking a day to write a paragraph.

Hopefully I can rejuvenate this website. My contact email is actually

I used to love getting contact from all over the world and sincerely hope for it to happen again.

Try and exercise. Try to retain strength especially in your legs. Try as hard as you can to delay entering the abject world of hoists and paid dependency!


Ode to Friedreich's Ataxia--------An honest lyrical poem about this disorder.

What have you done to me,you cruel bitch?

Curled fingers,slurred speech, locked pelvis,

Decaying muscles that twitch.

Attempted normality,

a scraping descent to those who drool,

Down with the card playing discards of life,

But just when was I ever a more normal fool?

A conveyor belt world primed as for a race,

Courses, careers, full dripping lives,

Me, an uninvited onlooker not knowing his place?

Fruitless courses, meaningless letters,

A direction-less, unemployable semi lout,

Tortuous tomorrow’s that keep on coming,

Uphill climbs and downward spirals,

Down but never out.

Hoists, paid strangers and gore,

Existence is far different from living,

"normality?" I don't know what that word means anymore.

Sexless, lifeless, long fingernails,

Cold and scabbed,

Trapped in my bed with handrails.

Events big or small are viewed or read,

From the cold confines of my bed.

Ungrateful am I?

To whom exactly?

A cosmic cloud, a light refracting?

Bedroom, studied wallpaper, empty roads, saviour sky

"pro life" sentiments croaked by worldly types,

Who stubbornly refuse to die

Will a cure for you ever be found?

Sealed memories of slippery grass underfoot,

Leaping, skyward bound.

40 now, a milestone for some,

Compressed and inverted,

The future is glum.

Keep going I must,

What other option do I have?

Trying to forget what could have been,

Until the final dissolving thrust!