I think for me the biggest difficulty is being worse sometimes than others. My neighbour with a bad led is always like that but for me ataxia can be bad or I can be not so bad. So it looks as though I’m making it seem worse than it is. It’s not good days and bad days for me, it’s good situations and bad situations. I’m always worse inside a building than outside - as though my brain gets frightened if has to cope with extra sensations: sun, rain, wind, the feel of the ground. I’m much better on a pavement. I cannot walk on any surface where I can’t see my feet. My wife bought a new rug a while ago. It created unsuspected difficulties for me. The ground in that area was a few millimetres higher. It was softer and squashier than before so my brain had to cope with changing sensations. It was slightly hairy so I couldn’t see my feet quite as well. All these things made my balance worse. This was 2 or 3 years ago - my brain has mostly learned to cope and it’s much better now. I’m not sure if this is ataxia or not - but if it isn’t, then it’s a strange coincidence. But the worst of it really is that my GP and neurologist are always inside so never know about this side of it. If I told them, do you think they’d believe me?
I wasn’t going to reply because this thread is good from what I’m reading. But I would like to add my 2 cents. As far as I can see, people [including all healthy doctors] KNOW ONLY WHAT THEY PERSONALLY KNOW. Doctors know the underlying reasons why people get sick but they really can’t understand what a person feels because of the above. Doesn’t mean that you shouldn’t go to them but you know your body better than them if you know what I mean.
My Nystagmus really interferes with my depth perception. So I completely understand cross-eyes’ post. But I completely doubt that any healthy person would understand.
I remember as a young child jumping up and down on a bed’s mattress. If I tried it now, I would need someone to call an ambulance because I would wind up on the floor with a broken something.
You should read this thread Good day, bad day
I’m not surprised by these problems ‘underfoot’, it’s common to hear people say that they’re not only unnerved by changes in the feel of surfaces underfoot, but also by visual changes, patterns and zigzags etc. Even putting spongy inner soles in my shoes can effect my balance Solid surfaces feel better than carpet, cobbles are disastrous It would be a good idea to mention this sort of thing to your Neurologist, they don’t presume everyone has the same ataxia symptoms, and it could be useful in pointing to a definite diagnosis.
I’ve just come back from a trip to the Supermarket. My Husband drove, and the journey there was fine for me, but as soon as I stepped inside the Supermarket and became enveloped in the general busyness and bright lights, my ability to multitask was affected. I found it difficult to concentrate, it took me ages to zone in and focus on labels etc and I just wanted to get out as quickly as possible. Now I’m back home and sitting in quiet familiar surroundings I feel totally different xB
The symptoms that cross-eyes reported are normal for people with ataxia. Your doctors should believe you. I know that in my case, I rely on changes in color to indicate a height change. I did not even realize I did this until I found myself always stumbling in the same spot in front of my sisters house. I finally figured out that the brick color changed without an elevation change and that got me “off”. We all consciously or subconsciously rely on various clues to bet by. When things change, our past clues stop working.
I wanted to comment on loved ones not accepting sickness. That is classic denial because they do not want to believe in the sicknessaffecting their lives, as annoying as it is, it is more about them.
Ah. The good ol’ cobbles. My wife thinks living in nice quaint Howarth would be lovely. Just thinking about it puts the fear of God up my spine. Well it would be my spine I suppose.
Nearly all the streets are like this, including the main street for shops.
In Huddersfield (UK) where I live, the council (the political body who make such decisions for us) decided to buy some pretty coloured bricks. They were placed so you could see where the level changes. Very nice - until they break and need replacing. No fancy stones left - so we have all sorts now and walking in the town centre is like a minefield.
This reminds me of the Hovis commercial For years I thought it was set in Yorkshire, but it was Dorset
Durham challenges me, it’s a beautiful City but you need to be nimble on your feet
As a child, I lived in a Northumbrian mining village. In the 1950s the roads around the Colliery houses were still cobbled. I waited years for roller skates xB
I bet you enjoyed going down here with roller skates
I don’t know why but I too thought it was Yorkshire - not very far from where I live.
I’ve just watched the video, I don’t know why I never noticed the south country accent before now. It’s the Brass Band that always made me think of Yorkshire xB
I have the exact same issues. It is really wonderful to have this forum to feel connected.
Best to you,
Replying to Chas THEY ONLY KNOW WHAT THEY PERSONALLY KNOW. Yes but why are they so dumb? If someone has diabetes (just one of thousands of diseases), it doesn’t need personal understanding to understand the symptoms. All they need do is read this forum or ask an ataxia specialist or look up the symptoms of ataxia. Surely they can understand what the cerebellum is there for so should be able to understand the problems of it being absent or damaged.
Sorry, but I kinda disagree. While they might know the reasons why something is happening, they don’t know what that feeling is because they don’t experience it in their body. But like I said in my post, it’s a good idea to keep them in your life. They are NOT DUMB but just don’t experience the feeling.
Ok. I beg you pardon. I didn’t literally mean ‘dumb’. I was exaggerating but I don’t understand why they can’t understand the obvious: if the cerebellum doesn’t work properly, the related nerves will fire when they shouldn’t or not fire when they should. Hence, symptoms will constantly change: stumbling, lurching, vertigo and many more. Symptoms will be worse if feedback nerves are similarly haphazard.