Ataxia unexplained: My husband had a series of... - Ataxia UK

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Ataxia unexplained

Vee47 profile image
7 Replies

My husband had a series of strokes (ranging from a "funny turn" to a Cerebella Stroke) on the same day just over 3 years ago. We've had a rather traumatic journey since then because of various complications & other medical problems.

Shortly after his strokes & not long after he had received his driving licence back from the DVLA, my husband was diagnosed as having "post stroke epilepsy".

Now, I am quite aware of the medical condition Aphasia (the inability or impaired ability to understand or produce speech, as a result of brain damage), but I had never heard of Ataxia until today.

I would be very interested in some-one sharing their experience of Ataxia & how it impacts on their wellbeing.

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Vee47 profile image
Vee47
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7 Replies
wobblybee profile image
wobblybee

😊 Does your question actually relate to driving, and the diagnosis referring to Epilepsy🤔

If so, it is necessary to advise the DVLA😏 I've been in a similar position myself. It doesn't necessarily stop you driving, although after a seizure driving is forbidden for a year, and medication is usually prescribed. Your husband's Neurologist would be contacted, in all likelihood a 3yr licence would be issued, to be reviewed.

Apologies if I've 'got the wrong end of the stick'😉

I didn't have a stroke, I had a seizure in my sleep, and deja vous episodes.

Cerebellar Ataxia is also a condition that must be disclosed. It's possible driving ability could be impaired, for several different reasons, again the Neurologist is contacted.

Cerebellar Ataxia can be variable re severity and progression of symptoms, it really depends on the individual. Apart from balance problems many people report eye problems (double vision and Nystagmus), poor perception of depth, and being out at night when it's dark can be very disorientating.

You can find reliable information on ataxia.org.uk and ataxia.org

🙂xBeryl

Vee47 profile image
Vee47 in reply to wobblybee

Thank you for the reply. My husband was an HGV driver before his strokes which is why he surrendered his licence. He has never been contacted to see if he wishes to resume driving, which he is not really bothered about.

Having read more since my first post, I still feel Acquired Ataxia is something the medics know about, but are reluctant to share information about. But everything I've read about various symptoms is almost parallel with what is happening to my husband.

I'll take a look at ataxia.org.uk . Again, thank you for the reply xx

Litty profile image
Litty

Great reply from wobblybee.

Ataxia takes some getting used to and it is very individual. Stay as fit and active as you can. Never be told you cannot do something until you have tried for yourself.

We all get bad days and stress really effects you. I sleep for 1.5-2 hours most afternoons and apparently I am much nicer if I do!! Lol.

Try to exercise your speech and throat muscles as much as possible. I use thickener in my drinks too.

They thought my Dad had a stroke but it might have been his ataxia.

Hope this helps. I stopped driving a few years back now : )

Vee47 profile image
Vee47 in reply to Litty

Thank you for replying.

My husband suffers really badly with fatigue & often has to spend the best part of all day in bed. He becomes easily stressed & panics if something is not where he thinks it should be. Frequently, he has problems with his nose running just as he begins to eat. Until recently, Den was singing in a Choir for stoke survivors & it really helped his speech & his confidence.

He certainly has no desire to sit behind the steering wheel again. He's quite happy for me to sit in that seat.

Take care & thanks again.

HarryB profile image
HarryBAdministrator

Hi vee47

I haven't got much to add to the excellent replies above . I just thought you may find the following link useful on Balance and Stroke -

stroke.org.uk/sites/default...

Best wishes

Harriet

Vee47 profile image
Vee47 in reply to HarryB

Thank you Harriet. I have asked the Stroke Association if they have any info specific to Ataxia & am waiting to hear back from them. Just want to learn more about it & to find out if this is the reason my husband has such poor balance.

ilhana profile image
ilhana

I can recommend the balance wear it’s a grade 1 medical aid so your insurance should cover it but you have to go to Denmark to have it fitted

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