Archive for FA progression

Words DO matter-Clean up your sloppy English!

I was watching Pat Kenny Live last night, with one very interesting section on political correctness or whether it has gone too far.

Apparently the British medical association, no longer refers to someone as male or female, for fear of …

The “boy” at the table!

I am positioned,

feet away from the table,

taking it all in,

even in my left out state.

 

From my plate,

piled high with dependency,

Inverted attempts at negotiating,

Recalcitrant limbs to quivering mouth,

a definite appetite suppressant!

 …

Misunderstanding F.A (easy to do when you don’t have it)

I had been recommended to see a clinical neuro-psychologist. After the appointment came through and with a lot of time and effort on my part, I made it up there for 9.15  am.

However by the time we got an …

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 very disabled body-A joke without the humour

Yesterday, I went to see a one man play by a guy with Cerebral Palsy. Robert Softley’ evocative “If these spasms could speak” took place in the intimate Project theatre in Temple Bar.

From the moment he climbed …

Struggling with the Buddha at Dzogchen Beara

bud(Originally posted; May, 2012)

Part of my reason for going down was to give my heroic mother a short and long overdue respite.

The punishing train from Heuston, got us to Cork at 2.30pm, but thanks to a wonky sat …

Gym or gorge——Invest in your own body!

When it comes to muscles, the adage “use it or lose it” is painfully true.

I really do feel,that if I was not going to the gym in K Leisure Naas (who thankfully have a number of customisable (for wheelchair …

Say good riddance to the past through the written word!

I rarely look back, preferring to keep the door to so many painful episodes firmly and unshakeably sequestered. However I fully realise the power it has, both for yourself and others, to share your experiences in words. Here is one

” I’m so sorry darling”–Poor language in hospitals

(Update 8/8/16: This is an old blog from 3/9/12 but still the language issues remain).

I am here once more again among the heroes in hospital. After the recent episode with Tony Nicklinson, I suppose it just highlights for me, …

Where has my sympathy gone?

One of the horrible side effects of growing older with a progressive disorder is a hardening of the spirit. Maybe its a defense mechanism or a refusal to waste time on crocodile tears or even to tolerate being around those …