Huntington's disease 

An expert explains the effects of Huntington's disease. Lee, 39, talks about his life with Huntington's and the importance of getting tested if you have a family history of it.

Recognise the symptoms of Huntington's disease

Transcript of Huntington's disease

Huntington's disease is a neurological condition,

and what happens is that some cells within the brain,

in selected areas of the brain, become sick and eventually die.

My mum had Huntington's

and she'd been ill for years

and I just wanted to find out whether I had it or not, and I did.

(doctor) To have Huntington's disease

you've got to have a mistake in a specific gene.

It's a condition which affects, basically, movement.

thinking processes

and can often lead to periods of depression.

And so I've had the symptoms about three or four years now.

I become a lot clumsier.

I've started twitching a bit more of late.

Right shoulder once again when I become stressed.

I tend to mumble a bit now and again.

And also stress, that's a big one.

It can be anything, absolutely nothing, and it'll set me off, so...

What you're seeing is basically a progressive neurodegenerative disorder

and problems with the musculature.

Seeing what it did to my mum, I think it's laid the foundations for myself.

I'm clumsy anyway.

Dropping stuff was part of my life before I got Huntington's anyway.

So I'd be always wondering whether... and I couldn't to that.

The majority of people who are at risk choose not to be tested,

but since the gene was identified it's become a relatively easy laboratory test

to measure the size of the gene.

I obviously understand that there are other people who can't find out.

I mean, our family's all split.

My brother and sister have different views on it.

My sister found out, so... and she's obviously got it.

So... yeah.

I can understand my brother not wanting to know as well.

It's hard to say. I was almost positive that I didn't have it.

And... And then I did. It was a bit of a shock.

It is important that if patients are having problems with depression

or irritability or aggression,

that those are treated actively

using the standard drugs

that would be used for any patient

with those problems.

You can involve physiotherapists,

you can involve speech therapists if they have problem with speech

or with swallowing.

I'm not sure that I'm going as bad as my mum did.

She... well, she bordered from any time...

She could be normal, but at the same time she'd just flip to going into...

she could be going into quite a nasty rage at times.

And she ended up being by herself, with no-one, and that's no way to go.

My biggest fear at the minute is forgetting people.

I know that that's my biggest fear, really,

is not being able to talk to people or maybe not remember people.

As far as it goes,

there's no effective treatment to stop the underlying problem

within the nerve cells of the brain.

So the treatment is effectively symptomatic and supportive.

I rather think of it as a long illness

and the needs of the patient change over the course of the illness.

And so the sort of help that they require changes over time

and sometimes they need to see different specialists

at different times in the illness.

My wife Lisa, well, she's my rock, she is.

She helps me day to day,

keeps me going if I have a wonder, start to wonder for any reason.

Like little things. It's little things, it really is.

I try and keep as upbeat as possible

and I think that's helping me in a way, I really

I think being positive about it and not trying to hide it

is helping me anyway, a lot.

So... I think that's the best way, I really do. Don't let it bring you down.

It's bad enough that you've got to face it anyway

without it winning and bringing you down.


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