Ataxia - my description: Ataxia I slur my words... - Ataxia UK

Ataxia UK
3,297 members3,516 posts

Ataxia - my description

ConfusedAtaxian
ConfusedAtaxian

Ataxia

I slur my words; I cannot write,

not even sign my name.

I drop my food; need help to bathe,

To others I look lame.

I’ve fallen down and elbow broke,

so I try not to fall,

for example, when I dress,

I lean against the wall

I’ve cramps a lot, get out of bed

to make them go away.

I bang myself, I spill my drink,

I choke most every day.

I used to spend most of my time

working in the garden,

Now walking’s hard and I am tired

Of hearing that word “pardon?”

I see my pots I used to fill

looking so neglected

and pretend that I’m okay -

to be as expected.

My sense of humour - it is still there

But I must concentrate

Sorry I can’t turn round

Or I’ll end up prostrate!

I used to cook delightful meals,

Now I can’t cook at all,

or cut up food, or use a knife

and cupboards are too tall.

I shake sometimes or spill my drink;

shopping I can’t do.

I cannot drive, I cannot bend,

I’m no use to you.

Internet shopping has changed a lot

From looking at nice gear

to researching a good walker

and aids that are not dear.

Some days are good, some days are bad,

but wobbly they all are,

I liked to drive but had to sell

my freedom with my car.

My husband and our grandson

found cancer at their door -

I may wobble and slowly move

but I do not ask for more.

To see them brave yet positive

just made me braver too

and feel less sorry for myself -

I’ve seen what smiles can do.

My husband he does everything

he knows I cannot do

without a moan (he sings all day);

he really pulls me through.

So each morning that I awake

I’m grateful for the day.

Although I’m not as I was,

I have no pain to take away.

Just been unlucky so the doctor says

to get such a disease,

so I’ll wobble and I will smile

but hope for a cure - please!

I’m grateful for this forum

where you can have your say

and grateful for the help received

from Ataxia UK.

©️LPD

33 Replies
oldestnewest

Beautiful words xx

Bless you x

Beautiful words. There’s a lot to be said for counting your blessings. There are people a lot worse off than us.

You’ve hit the nail on the head with all what you say- take care x

So true x

That's a fabulous poem, and so true xxx

Wonderful poem, as you hit the nail squarely on it's head! My best to you...,;o)

Almost my everyday dilemma

Really related to your words. Be well x N

Beautifully expressed! Bless you, and thank you for sharing this! I live for the good days. Ataxia is not easy to live with. Many people don’t understand, and sometimes it’s a bit much to cope with; however, we have this forum, to share and communicate with others, who have Ataxia, and who do understand! Take care!!

You sound similar to my husband and I wish you well!

Spot on. Just as it is. No confusion in the way you describe our condition. Thanks.

Brilliant!!Have you had it published anywhere?It is such a true account of how we all feel,surely it could be used for the Ataxia Awaireness Day?

Not published Trinity.

ATAXIA'S A B...CH ISN'T IT,NO ONE SAID IT WAS GOING TO BE EASY!Take care.

I love this.keep smiling and the whole world smiles with you.🙌

Excellent. Spot on. We all encounter problems. I know it's very difficult but it's how we cope makes us more determined & strong. Wishing you well 😕👍😀

It made me cry 😢.,.i could have written that myself but I’m no poet. Beautiful and painfully written, thank you 🙏🏼

No body describe. ataxia like you did.., my story too..

Stay strong ...,

Beautifully worded. Send in to Ataxia Magazine, I am sure they will include it in their next edition.

Couldn't put it any better than that.

Hi confused ataxia my sue I to gave ataxia I have dysphagia while out shopping some person reported me to a copper that I was drunk I nearly received a ticket as asked him if could spare a moment I explained my condition he was so interested

I hope he told whoever reported you about it. People can be so cruel!

Very inspirational...words that we should all live by not only those of us who are afflicted with this unfortunate condition....

I slur my words, my vision dims, my balance worsens, and I grow fatigued, only when I become anxious or stressed. To regain my equilibrium I sink into my recliner with a hot drink and, something to eat, (snack) up to an hour later if I feel able to continue with my activity I do so. Avoid stress and contention and have a break/rest every two hours with a snack. KEEP WARM. In the garden I wrap up well with particular attention to my head and neck so a snood and balaclava is now the fashion when gardening.

I continue with my prescribed medicine, exercise bike and activities as I'm able. My Son introduced me to Wellman tablets which are rich in VitB12 plus other vitamins, well worth a try. Fortunately for me I have been a fan of Marmite for many many years so I supplement my B Vit intake using it, Vit B6, thiamin plus...

The Neuro surgeon told me Ataxia is degenerative and he could only hope to slow its advance.

Today: at the moment I feel pretty good, no stress or vision difficulties. So I thank my medical team for their care and help.

It's just a matter of time!!

Lucky you, stedman, to have a medical team - I was signed off by the neurologist and physiotherapist almost immediately. Balaclava and snood no good for me as steps and unable to garden but I like your positivity. Had a B12 blood test on 10th Jan and okay (after injections and given too much). I do not like Marmite, lol 🤗. Keep smiling 🤗

Beautifully put and so true xx

This poem's so true it makes me cry. Everything you say is me to a tee. You have picked on everything about my ataxia. I know every ataxia sufferer is different and being on this site just makes me realise how lucky I am, there are folk worse than me. Take care.

You say it all, in a way that I can’t, how it is to live with Ataxia. Thanks for sharing this! Bless you!

Like your poem, an Ataxian to a tee

FA, Kent, 🇬🇧

Thank you for poem. It brought tears to my eyes as it described my life. I’m a mom of three little ones who need me. I have Ataxia SCA . I can’t die please help me!!!’

Please don’t be upset. I read it progresses over decades. You need to be strong for your children.

Brilliant Confused, describes me to a tee. 👏👏👏😀 Xx

You may also like...