I don't have the gene but I do have HD!

by David McDonagh (2008/2009)

I don't have 'the gene' - but I do have HD,
Let me explain and I hope that you'll see.
I tested negative….and that's just how I feel,
The counselling, the nightmares, it's all so unreal,

It was in our family but we had no idea,
It came like a bombshell bringing such fear.
I live it and breathe it, it's a part of me,
Wherever I go, whatever I see.

HD in your family is as bad as it gets,
The worst kind of illness… you just can't forget.
Your brothers, your sisters, your kids all the same,
Watching each other for signs….such a shame.

Positive or negative, whatever's revealed,
Your life changes forever, cannot be healed,
Why them… not me? Comes into my head,
I should have had it….not them… me instead!

Then I look at my wife, my children, grandkids,
And I feel so guilty for feeling like this.
But I still feel guilty for not having that gene,
So now, I hope, you can see what I mean.

It changes lives forever, it doesn't go away,
The only thing to do is take it day by day.
You can fight it, ignore it, or simply hide away,
But with the help of those around, you can keep HD at bay.

It's better to know… than live a life of fear,
It's better to fight together, no matter how severe,
Don't go it alone like some people do,
Let in the people who will be there with you.

The fact is, I am negative yet still have HD too…
It affects me in a different way, that's undeniably true.
So I hope that I've explained, I hope that you can see,
I don't have 'the gene' - but I do have HD.

Huntington's Disease

by Anonymous

She tried to hide it,
But it didn't take long
Before I began to notice
That something was wrong.

I was still young,
So I didn't understand
What could be causing
The tremors in her hand

I was confused
And I didn't know why
Dropping something
Would cause her to cry

Is this my fault?
Is it something I did?
I thought it was because
I was a bad kid

Year after year
I saw her get worse
It's painful to watch
The disease take its course

Sometimes she'd get snappy
She would be hard to please
I had to remember
It was just the disease

Where did my mom go?
Will she ever be back?
She's trapped in her body
And it's under attack

Her movements are jerky
Her arms are always flailing
I cry because I know
Her body is failing

Now, she can't walk
And she struggles to stand
The things that she says
I can't understand

I admire her courage
And I will always love her
No matter what happens
There are angels above her

I have to be strong
I do my best to care for her
I love her so much
I will always be there for her

My little sister is 10
And I try to keep her protected
I try to keep things normal
But I know she's been affected

I'm worried about my sister
On the outside I'm calm
But she needs more than I can give her
And I can't be her mom

Sometimes I feel hopeless
I have to get through this
I'm scared, and I'm not sure
How much longer I can do this

Sometimes I wish
My dad were still here
It's weird how some people
Can just disappear.

I need to stay strong
And I worry everyday
That someone will come
And take my mom away

I wonder what she's thinking
If she's even aware
But then I look in her eyes
I can tell she's still there

I can't ignore the facts
But I wish they weren't true-
There's a 50% chance
That I have the gene, too

In my hands I will get
A tingling vibration
Is it a symptom?
Or just my imagination?

I try not to worry
About what's unforeseen
I have lots of time-
I'm only fifteen.

Sometimes I leave
And go out with my friends
But then I feel guilty.
The guilt never ends.

If there is a God,
Why is he so mean?
Why curse our family
With this terrible gene?

I'm sick of this disease,
Of all the pain and frustration
If I test positive, I swear
I'll be the last generation.

In a life of uncertainty
There's one thing I'm sure-
One day, some day,
There will be a cure.

The Lost Generation

by Trish

Putting on her blazer as she leaves home for her classes,
Lucy kisses daddy's head whilst stroking as she passes.
Daddy doesn't smile at all, or conversation start,
Lucy closing door behind her, sadness in her heart.

School is over, Lucy home, she goes straight up the stairs,
Mum is chatting to the doctor, daddy unawares.
Lucy knows she's not included, mum thinks she's too young,
Yet shortly after doctor leaves her day is just begun.

Helping with the tidying she makes them cups of tea,
And listens to her mothers' day whilst trying to watch TV.
She's told her mum her day was fine, she didn't want to add,
To her mother's stressful day by saying it was “bad”.

Feeding daddy, wiping spills, to give her mum a break,
Lucy counts the tablets out, which hopefully he'll take.
Lucy broaches asking mum “what did the doctor say?”
“Nothing you need worry about” and then mum walks away.

Tired she goes up to her room, her homework to be done,
Double Science class today, genetics wasn't fun!
HD covered, cold as science, little do they know,
Just 14 she's tired of HD, nowhere she can go.

Huntington's Disease Poem

A 12 year old at Risk

You are a killer,
A disease from satin,
You make lives miserable,
Over the Ages.

I lost so much,
To you in life,
You ruined the days,
That I loved the most.

Loved ones are gone,
My heart is broken,
But somehow we live,
Knowing that you've spoken.

Through the pain,
And through the hurt,
We cope together,
With the family we love.

With someone there for us,
We understand each other,
Meeting new people,
Whom we can trust.

They understand us,
We get them,
Together we fight,
For a cure within.

I cannot wait,
For summer this year,
To see convention faces,
Whom I near missed.

R.I.P All who have died from H.D
There is a hope

By Natalie

they said to look for a sign,
I chose not to listen my body was mine,
apparently it runs in my blood line,
they said her body, his body, mine,
I tried not to listen and put it behind,
but family and friends are not deaf nor blind,
it's the guidance of HDYO that brings it to mind,
without understanding the world wouldn't be kind,
without the courage I would not find,
of course who would want this disease in life?
the upsetting torment the pain of strife,
it's the impact of my soul it defies me of who I am
and makes me a hole so I may smile of what everyone sees!
but deep down I'm a sufferer of Huntington's disease!