View Single Post
Old 05-09-15, 10:20 AM   #261
Approved Member
Trish's Avatar
Join Date: May 2010
Location: England
Posts: 2,388
Default Re: Curse in Verse - the poetry of HD


It would appear in the last post that the link to the book dropped out.

Another link is given below/ here in case anyone is interested.


The Terminology


This poem is about the use of medical terms when referring to symptoms of the disease.

Shortly after my husband was diagnosed, we were sent a copy of a letter to his doctor which was written by his Neurologist. It contained the word ‘anhedonia’. I had to look the word up and it made sad reading as it brought it home to me that, whilst my husband was still showing signs of recognising ‘pleasure’, it could be that he would lose even that most basic form of human awareness.

Because of the complexity of the disease, the chances are that many will come across words used in the description of symptoms that are not easily recognised. The majority of the terms given below were used in connection with my husband. I personally found it useful to look into the meanings of the words to try helping me get a handle on where those making assumptions about my husband were coming from.

“It’s all Greek to me!” Is the phrase in my head,
As the words on the paper begin to be read.
Is it Greek, is it Latin? I haven’t a clue,
But it sounds quite impressive how they describe you.

So I turn on computer and search on a word;
Oh why is the spelling of these so absurd?
And then one by one, as their meanings unfold,
It’s no wonder they use them, the sadness they hold.

‘Aspiration’, tells me though happy you’re fed,
The nutrition is aiming for your lungs instead.
‘Dysphagia’, tells me the food that I give,
Is making you choke more than helping you live.

‘Dysarthria’, tells me your mouth will not say,
What you want me to do; do you want it this way?
‘Bruxism’, tells me your teeth will grind more,
And whilst you do not notice, my nerves can’t ignore.

‘Ataxia’, tells me your order is altered,
Explaining the speech and the steps, which are faltered.
‘Dystonia’, tells I straighten in vain,
The stiff limbs contorting, contracting again.

‘Alexithymia’, tells me your feelings are dead,
Or you cannot express them as words can’t be said.
‘Anhedonia’, tells me you cannot feel pleasure,
Devoid of the feelings you once used to treasure.

‘Myoclonus’, tells me the thrashing in bed,
And the knee in my back, and the punch in the head;
It’s not that you mean it; it’s not aimed at me,
There’s a name for this symptom within your HD.

Originally Posted by Trish View Post
Hi all

Hope all are doing as well as can be expected.

Thought I'd pop in to plug the book again


Apologies that I am not as active as before on Messy Board but we all need to take a break at times.

Also... I am distancing myself at the moment where I have started a new part-time job. Apart from the impact on my free time, the job is working in assisting on administration for Mental Health Tribunals in the London area (Mainly SE).

I need to try and keep an open mind when sitting there while proceedings take place. Incredibly interesting; incredibly uplifting at times (see below); and also incredibly frustrating too at times as you can imagine but I need to sit and listen only.

My first day was a 'shadowing' session on a Section 2 case. The lady I was shadowing told me she had never seen a Section 2 patient discharged in all her time which was over 2 years. Fair to say she doesn't work every day, and that she doesn't only do Section 2 cases but that still made me nervous that it could be a box ticking thing rather than a proper hearing.

Anyhoo... I sat through the hearing and the patient was discharged which encouraged me greatly. Nothing to do with me I hasten to add. I just do the tea and run around with the paperwork lol but I reckon Steve is accompanying me too and having a little word in the ears of the Panel Members

Talking of Steve, we are still helping donate to the HDA, and indirectly to you guys, via the Just-giving Page where Crystal Palace are doing amazingly CLICK HERE FOR GOALS FOR GENES

Just as well I have the part time work. It's paying just above minimum wage and there are no guaranteed hours but at least it's paying for all the goals
I tried.
Trish is offline   Reply With Quote