Ataxia - my description

[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

[MusicalGardener]

Beautiful words xx

[LOUISASAM]

Bless you x

[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]

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

[Grapes12]

So true x

[ww-wibblywobbly]

That's a fabulous poem, and so true xxx

[february]

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

[Bobby1124]

Almost my everyday dilemma

[neta]

Really related to your words. Be well x N

[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]

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

[Piero]

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

[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 in reply to Trinity1948]

Not published Trinity.

[benning]

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

[littlelegs914]

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

[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]

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

[Devrim]

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

Stay strong ...,

[winch]

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

[medea]

Couldn't put it any better than that.

[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]

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

[lindamctaggart]

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

[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 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]

Beautifully put and so true xx

[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]

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]

Like your poem, an Ataxian to a tee

FA, Kent, 🇬🇧

[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 in reply to Ataxia123]

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

[Veteran250]

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