Does anybody else feel alone going through this? Like not alone alone but people just don’t understand how hard day to day life is? I hate being in a wheelchair and I feel as though people always stare at me so I avoid people… comments? Thoughts?? I’d love to hear what everyone has to say
We completely understand here! But don’t make that your only thoughts. Yes, you’re undergoing a very difficult coping but you are also coping and that also shows how tough you really are. I was given excellent advice years ago. Either you can let this illness overwhelm you or you can continually try to overwhelm it. I’m pretty sure that you are the latter.
Perhaps you should talk with a professional if needed.
I understand how you feel. I’m waiting on a wheelchair to arrive now. The transition is extremely difficult. We will, however, continue to move ahead.
I’m lucky so far if you can call it that that I am not in a wheelchair and my Ataxia is slow progressing so at worst I may need a walker, That being said, I walk like I am drunk alot of the time and fall when it is bad. I was embarrased to have to tell my daycare educators that I have a condition and please don’t call CAS on me because you think I am drunk. I am not. It’s those type of conversations I hate, I don’t want to have to defend myself for things like that. I understand you feel like you are being judged for being in a chair, it should not be that way. Just know you are not alone in feeling this.
I can still walk but need an aid for safety, it has crossed my mind that I’d function better ‘mentally’ if I was seated all the time…
Just yesterday I was in town with my daughter (I couldn’t consider going alone), and I felt overwhelmed by sensory overload, it was exhausting, and this is a common experience with ataxia. Being on my feet with poor balance and eye problems makes me feel vulnerable…I’m not totally aware and this leads to errors in judgement…
Hi Taymay, I think we all feel a lot of anxiety in public. I’m not in a wheelchair yet, but I don’t think it’s that far in the future. I know I definitely avoid people/situations unless I can’t avoid it and I know that I’m not alone.
I just do whatever makes me feel happy or comfortable.
I think in general people with ataxia are mentally stronger than the average person because they have to struggle day to day and get used to their lot.
Just stay strong and maybe talk to an understanding friend or partner about how you are feeling.
I walk but not great and like all of us have balance problems so avoid slopes and stairs down.Trying to avod falling and aids but probably have to use one eventually,if i am ah
I relate! Sometimes when I venture out peoples reaction to me are so extreme that I want to hide. Passing a woman recently I notice how frightened she became as I approached. I see myself as a gentle sole with balance difficulties and she saw the hunchback of Notre Dame. Just surround yourself with people who can see you and avoid people who see an illness.
I never worry about people starring at me. Say hello in fact. If fact I enjoy this and engage them in conversation as well. Dress loud, colour your hair, wear hats, scarves and beanies. Not the hair in pic is not a wig, enjoy life. Coloured hair is great in hospital to engage the staff. I have been there many times
Well it is what it is. Not ideal. I have been frustrated for quite awhile. Thanks for the post. I needed someone else posting frustration. I felt like a loser crying “This ain’t right”. Chas521 is a good old soul. We don’t all have his fortitude. I certainly don’t. Not in a wheel chair yet, but did bust the back of my noggin open just few hours ago from falling backward. Pressure has stopped the bleeding. I was so gung ho when I joined this channel, and relieved that others were going through similar situations. In the end you must rely on the person in the mirror and the faith of a greater purpose, whatever that is. Believe, your battle has just begun. Rely on all the resources at you disposal, including the website. You will find support. We can not win ALONE. It is a daily battle.
Thanks for the kind words Brandon but to be honest, I have depression because of this illness but I’m NOT depressed. I was an athlete before I developed this illness. In fact, I was looking forward to a professional career. Athletics also helped me because of a poor family early in my years. So…….
I live life as best as I can, one day at a time. I’ve taken care of my financial future or so I hope. I’m not sure that someone in our situation can do much more but don’t dwell on your problems.
EDIT: I was 21 when I developed Ataxia. I’m now 75.
Understand Taymay. All butts and bellies there where we sit eh. You know what I mean:) Take care luv!
I have had Ataxia since 2015. I am still using a walker, but I have fallen a few times. I think it would be best to use a wheelchair, which I do sometimes when I go out. I think my sister doesn’t really understand me. For example, she doesn’t know why I need the lights on when it’s getting darker. If don’t I turn them on, it’s like closing my eyes! And many people think I’m simple because I can’t talk! It’s annoying!
One year on from being diagnosed with late onset cerebellar Ataxia I spent the year having an ms diagnosis but now they have ruled that out and are looking again.
I am on PIP enhanced, on the sick from work. They do not recognise the diagnosis and it’s progression means I need early retirement due to ill health (my retirement age is 66). I now am on no pay, single and no savings. Unison have been great, the problem is the Tory council I have worked for for 30 years.
I am still walking with a crutch but am really unsteady and need someone with me. I have been subject to the judgemental attitudes, usually of medical staff, who assume I am drunk because I slur and my gait. No has heard of cerebellar ataxia, even my GP. My neurologist sees me around 6 monthly. I have had to ask my GP for referrals to the SALT, Physio and continence nurses.
I am a strong person but feel so alone.
How do others feel?
First of all, please understand that you are not alone with your thinking. Doctors know of the symptom ataxia but 90% of them have never heard of Ataxia. The illness is not just rare but very rare!
Where are you located? Perhaps someone here can point you to a specialist.
This is the National Ataxia Foundation website https://www.ataxia.org/ I believe there is one for the UK also but I don’t go there since I’m from the USA https://www.ataxia.org.uk/ Both have helpful information.
Hi Kate🙂 I know someone diagnosed with Ataxia, who also has Fibromyalgia…in fact it’s not that uncommon. And, Neurologists who aren’t familiar with Ataxia can be very demoralising…it often takes someone who Specialises to have a better chance of an accurate diagnosis.
Sometimes it seems they simply put it down to ILOCA (Idiopathic Late Onset Cerebellar Ataxia)…and leave it at that without any testing…
You could ask your GP to be referred to Sheffield Ataxia Centre, the Neurologists are all Specialists there…But there’s likely to be a waiting list.
Log onto www.ataxia.org.uk (as Chas mentioned) and search for Branches and Support Groups, it’s possible there could be one in your area. And, the Support Groups are often holding Zoom meetings now because they can’t meet in person, you could join in
Knowing what to do next after a diagnosis, or wondering how to support a loved one can be a bit intimidating; Ataxia UK are here to offer support, information and advice to anyone affected by ataxia. Why not get in touch? Sheila Benneyworth, our Support Officer, and Julie Greenfield, Head of Research are available to talk or email via our helpline.
If you would like to email our helpline, you can do so using this address: firstname.lastname@example.org or you can call Ataxia UK’s helpline on 0800 995 6037. Opening hours are 10.30-2.30, Monday to Thursday . The helpline is closed on Fridays.
What if I can’t get through to the helpline?
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