🤔 For me, ataxia is so much more than a problem with balance and co-ordination.
It interferes with my ability to multitask, make decisions and concentrate.
My eyesight is compromised, and this has resulted in worsening balance.
The pitch/volume of my speech is variable, but this is unnoticeable to me. Slurring/losing my train of thought and using inappropriate words/descriptions can happen.
Choking on thin air, let alone food and drink, is scary.
Feeling disorientated even in familiar surroundings is disconcerting. This goes hand in hand with variable light and noise causing disorientation.
These ‘symptoms’ describe ‘basic ataxia’...I’m aware that other people have to cope with far more challenging issues, so saying our diagnosis is ‘ataxia’ does us an injustice.
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wobblybee
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I think of Ataxia, as one of the - many - identities, I have
I also describe it to others as a ‘disability I have inherited from my dad’, ‘disability’ being a word that both I and others can relate to. The word ‘Ataxia’ just seems to inspire ‘What’s that’ and long explanations.
Hi, There is no doubt that the condition can be over-simplified. In addition to the issues of balance & co-ordination, my major problem is fatigue - not physical fatigue but mental. As very few functions are done instinctively any more, I have to think through even the simplest of tasks like putting one foot in front of the other.
Multi-tasking is a no-go area.
I can relate to the 'losing train of thought' problem too. It's like a verbal Dyslexia.
Articulation of long words often catches me out.
The one thing I remind myself daily, is that (for me) nothing actually hurts. (As long as I avoid falling that is!)
I agree with all 3 posts but as my ataxia worsens my main fear is losing my job, I have worked from home for the past 12 months but it looks like I will have to go back in work for a couple of days per week and I will be 'found out' when I walk/stumble into work
I totally understand where you’re coming from & id say that everyone who has a diagnosis of ataxia will do, I always start if by saying’i have a brain disease where my brain is slowing shrinking for reasons unknown, I’m not sure if you’ve ever heard of it as it’s extremely rare, but it’s called idiopathic cerebellum ataxia’ then I go into further details if needed. It’s extremely hard to try to describe it, as anyone who knows what ataxia means(medical professionals) automatically think it’s just your co-ordination that’s affected, but as you say yourself it’s so much more. Hope my answer may give you some help in beginning on how to describe your condition.
I had 200 of the Ataxia 'I have a medical condition' cards printed and keep a few in my wallet so when anyone asks what is wrong I give them a cad which is a brief explanation of Ataxia, it saves me keep explaining what it is
I always say: It is Neurological and he symptoms are like a cross between MS and Parkinson. Everybody knows what that is.
No pain but after a fall it can hurt a lot. My last fall left me with extreme pain till the ambulance came more than 18 hours later. This was just before the pandemic. During that the ambulance might not have come at all.
Since then I cannot stand anymore without holding on to something. It seems that any physical misfortune, sickness or accident, increases the deterioration. And why do most able people think that the disabled only have one disability?
Isn’t that a true saying! Many people think disabled have but one disability! I’ve been diagnosed with PD, Ataxia, Seizures, and Migraine, as an example! I’ve found that many people could care less, and have problems of their own, so the last thing they want, is to hear me complaining, so I usually just stay quiet, and try to avoid those that I know, that don’t seem to understand, and would just as soon not be around me, and my obviously mobile disabilities, anyway! Waiting for an ambulance 18 hours, is insane!! Thanks for sharing, and good luck, as you continue to navigate, in our world, of living with Ataxia!
Yes all of that plus pain on waking which disappears when I put my feet on the floor. I am always anxious but pregabalin twice a day helps. I rarely explain symptoms as I'm too self conscious..
Many thanks for posting this. I have asked my partner to read it and take note as he tends to believe that ataxia is purely a balance issue. Unfortunately as we know it affects many aspects of our day to day lives.
Thats a really good idea re partner as mine seems to also forget all this and just thinks its balance - even that he sometimes has a problem with - good luck xx
Found your post very interesting, don’t have all the symptoms that you have . But did choke as you say on thin air for the first time the other day.Didn’t know that was part of Ataxia.
Find it hard to do the simple jobs so frustrating at times.
Having to ask for help . So thankful for my husband who helps me .
Hi there. Have just read all the posts and now feel frustrated and a bit angry.I remember sitting and telling my gp (face to face before covid) that if I had a tumour then we wouldn't have been having the conversation. I was trying to get some sort of action from doctors and consultants to help me instead of being pushed from one department to another to actually get to talk to someone who could give me some idea and understanding of my symptoms.
At my lowest times mentally I even thought I would have preferred having cancer, at least you get medical help, support and treatment then.
This might be shocking to some but I did feel like this.
What is needed. And I don't wish this on anyone.
Is a celebrity to come out and say they have ATAXIA. MND, PARKINSONS, MS are now out there and get publicity via celebrities, and the very least it would help raise awareness.
This was even said at the last ATAXIA UK virtual conference.
😕 I empathise with your frustration, I’ve often felt similar myself, and yes it’s true I did get immediate action with cancer..But personally, I try to remember how difficult it is to differentiate Neurological conditions, it’s not always just a case of recognising Atrophy on an MRI.
What a great post - I can relate to all you say and have copied it to send to my husband as he is a kind man but really doesnt understand how difficult things are other than balance - I think its hard to describe to anyone who doesnt have ataxia - thats why its always been so good going to a support group - sending love, thanks, hugs and kindest thoughts xxx
That is brilliant !I don’t know why I didn’t see this post last week but totally agree with your words,that is exactly how I feel now. It is so comforting to know that other folk feel exactly the same and understand,that is why this forum is so good.
But, as everything is opening up more during the easing of lockdown, I'm worried about how my interactions with strangers in public spaces will be (I've already had many, but I can see it soon being a lot more!). The Ataxia UK ID cards (ataxia.org.uk/support-servi... will be useful in most cases, otherwise I'll just try and say "I have a condition that affects the brain and it's many functions".
Thank you Wobblybee, when I’m tired and so stumbling more than usual, disorientated and not speaking clearly, I want to be able to explain to colleagues that I’m ok, but also not ok because this is a long term problem. Too self conscious like others here. Reading this is helpful. I asked my husband the other day why was I so completely shattered after not such a tough day. It was a rhetorical question (!) but he answered by saying I was working a lot harder than most just to function (CA). He’s absolutely right, and I think we all do well to bear it in mind and give ourselves a break when we’re frustrated with ourselves. X
“Working hard just to function”, is a good way to explain how Ataxia can affect people! It takes me twice as long, as most people, just to do routine tasks, such as walking up three steps, taking the dog for a walk, dressing, getting up out of a chair, eating etc. Some people lose patience, with me, and just don’t understand, maybe thinking I’m lazy! Rather than try and explain Ataxia, I think I’ll use the phrase “Working hard just to function”, more often, when people question me, on my slowness, of movement!
I totally agree with you my son has cerabella ataxia and has stopped him living a normal life he copes with it so well but it is heartbreaking to watch him struggle with everyday living so many people have no idea about ataxia and I wish it was my more known to general public. My kind regards to everyone
It’s really not uncommon for this subject to be raised in relation to ataxia.The most common topic is the bladder..and there are treatments available..
Bowel incontinence can also be treated..
If you don't want to see your GP, you can usually make an appointment at your local NHS continence service without a referral. These clinics are staffed by specialist nurses who can offer useful advice about incontinence.
Read more about diagnosing bowel incontinence.
How bowel incontinence is treated
In many cases, with the right treatment, a person can maintain normal bowel function throughout their life.
Treatment will often depend on the cause and how severe it is, but possible options include:
lifestyle and dietary changes to relieve constipation or diarrhoea
exercise programmes to strengthen the muscles that control the bowel
medication to control diarrhoea and constipation
surgery, of which there are a number of different options
Incontinence products, such as anal plugs and disposable pads, can be used until your symptoms are better controlled.
Even if it isn't possible to cure your bowel incontinence, symptoms should improve significantly.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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Coping with a diagnosis of Ataxia
