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

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Ataxia - my description

ConfusedAtaxian profile image
33 Replies

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

Written by
ConfusedAtaxian profile image
ConfusedAtaxian
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33 Replies
MusicalGardener profile image
MusicalGardener

Beautiful words xx

LOUISASAM profile image
LOUISASAM

Bless you x

piglet3 profile image
piglet3

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

Jacqui-A profile image
Jacqui-A

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

Grapes12 profile image
Grapes12

So true x

ww-wibblywobbly profile image
ww-wibblywobbly

That's a fabulous poem, and so true xxx

february profile image
february

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

Bobby1124 profile image
Bobby1124

Almost my everyday dilemma

neta profile image
neta

Really related to your words. Be well x N

ddmagee1 profile image
ddmagee1

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!!

Evissia profile image
Evissia

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

Piero profile image
Piero

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

Trinity1948 profile image
Trinity1948

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?

ConfusedAtaxian profile image
ConfusedAtaxian in reply to Trinity1948

Not published Trinity.

benning profile image
benning

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

littlelegs914 profile image
littlelegs914

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

Ginger12 profile image
Ginger12

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 😕👍😀

Mariweena profile image
Mariweena

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

Devrim profile image
Devrim

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

Stay strong ...,

winch profile image
winch

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

medea profile image
medea

Couldn't put it any better than that.

brummie62 profile image
brummie62

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

ConfusedAtaxian profile image
ConfusedAtaxian

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

lindamctaggart profile image
lindamctaggart

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

stedman profile image
stedman

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!!

ConfusedAtaxian profile image
ConfusedAtaxian in reply to stedman

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 🤗

Voice1 profile image
Voice1

Beautifully put and so true xx

weegiz12345 profile image
weegiz12345

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.

ddmagee1 profile image
ddmagee1

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

D1DG3 profile image
D1DG3

Like your poem, an Ataxian to a tee

FA, Kent, 🇬🇧

Ataxia123 profile image
Ataxia123

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!!!’

ConfusedAtaxian profile image
ConfusedAtaxian in reply to Ataxia123

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

Veteran250 profile image
Veteran250

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

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