newly diagnosed

[1940girl]

Hi, I have just been diagnosed with cerebellar syndrome and ataxia. I have nerve damage in my feet and lower legs and am constantly dizzy. It all started about 4yrs ago. I find that when i'm travelling, whenever the vehicle stops I instantly feel like I am going backwards. I cannot go into shops any more as this makes me more dizzy and supermarkets are a definate no no. I have days when I can't even get out of bed as everything is spinning and it makes me sick, but I do have days when I am not too bad. I just wondered whether other people have experienced anything similar, and if other people get frustrated, the same as I do, because people cannot see the condition and they don't believe there is anything wrong. Thank you

[SM5662RS]

Hello

So sorry to hear about your condition it can't be easy for you. My brother has after 8 years been finally diagnosed as having the same as you. His symptoms have been exactly the same as yours and the same experience when he went shopping. People stared or made comments about him being drunk which he found particularly distressing. I feel for you and my brother and everyone out there that had this distressing condition. Have you any support around you?

Kind Regards

Sharon

[1940girl in reply to SM5662RS]

Hello Sharon, thank you for replying. I have a partner who has MS so he understands to a degree what it is like, but he has different symptoms to me, except problems with his balance.but he is very supportive. I am sorry about your brother, I can totally understand how he feels. Is he still able to work? I had to give up work, as I worked in a primary school and was considered too much of a risk. I too have had people look at me, but so far no comments. I have been told that because I have limited feeling in my feet that my brain cannot get the info it needs so relies totally on my eyes for all its info, but my eyes give too much info and my brain cannot cope, just wondered if your brother or anyone on this site had something similar.

Regards Heather

[DeniseLB]

I totally understand, so just walk away. I have more than once been told to my face that there is nothing wrong with me, so I invite them to spend a day with me. and you might not think it but with the right stick you really can. I am tired of having to explain it over and over again, whatever you feel happy about doing then you should try I have gained a lot of strength over the last year.

[wobblybee]

😏Generally speaking 'hidden' conditions are very poorly understood and are often much maligned. The majority of us with ataxia will have experienced the same as you at one time or another. It does take a lot of self determination to overcome these situations. If you don't already use a walking stick to help with balance, get one. Just being able to see a visible aid can make a big difference in people's attitude🙂xB

[Veteran250 in reply to wobblybee]

I found with one walking stick my walking gait was very wide, so used two, it helped a great deal and as Beryl has said if people see the walking aids there are few and even no comments forthcoming.

[1940girl]

Thank you for your replies, I will certainly think about getting a stick, as you say, at least then people can see something. I don't really understand the condition, as i have been told different things by different people, but have been told it is progressive, am I right to assume all ataxias are the same. Even though this is a horrible thing to have, it is such a relief to know other people have the same thing, and can understand what it is like. It was mainly my family at first that didn't believe there was anything wrong as to them I didn't "look" any different and at the beginning I could still do most things, its only now I have "proof", that they have changed their attitude, but unfortunately a couple of my children haven't, so I don't bother trying to explain anything to them now. well done DeniseLB, for standing up for yourself. Thanks again

[Amynah]

Hi, I had similar symptoms as you. I went to see a physio for dizziness exercises. They worked. The rest is the same but without dizziness that makes ataxia much more bearable. Good luck.

[1940girl]

I have had physio, and given exercises to do at home,but they didn't really work unfortunately. I used to have days or even weeks when I hardly felt dizzy, but this last month I haven't had a break at all and I've noticed my balance is worse than it was. Feels like my head is "foggy" all the time and can't take in information like I could before. I guess this is the same for other people.

[PattiTilden]

Heather, I have the same symptoms and was recently diagnosed myself. The advice to use a walking stick (here in the USA, we call it a cane), is very good. It SHOWS people that you have trouble walking, and are NOT drunk. They are more sympathetic to that, but still can not be so nice. I've had people treat me like they think what I have is something they could "catch", like the common cold. Ha! Those people avoid me like the plague. Try to keep in mind that it is THEIR problem that THEY are so shallow, and it has nothing to do with you personally. They have a problem!! There are nice people out there, it is just that today they seem harder to find. Personally, when I see someone struggle, my urge is to want to help. Unfortunately, too many want to run in the other direction. Again, their shallowness, me thinks. If you have pain, I am going to write about some things I've found that help. Please see my post. Good luck ( we ALL need it)!! Patti Tilden

[ladyntramp]

Hi 1940 girl, I found your post interesting because over the years I have found that I can't stand too close to gaps because I get a 'beckoning' sensation, rather like that which you get when standing in the sea and the tide is coming in, it sort of pulls you out to sea if you'd let it. Also at times when I sit or when I lie in bed the room goes round and around - as if I was drunk. I didn't know what these sensations were so I tried to ignore them. Now I find they are related to this awful CA. Yes I do get frustrated (I feel sorry for my husband as he has to put up with me) but I do try to always look on the bright side - I think I'm a fairly positive person. The most frustrating part of this is that you can't do today what you were able to do yesterday, or even last week. I hate that people look at you as if you are daft, after all it is only the body that is slow not the brain. Try not to worry about them as it is their problem not yours. Keep your chin up girl. All the best, Barbara.

[1940girl]

Thank you for your replies. At the moment I am finding the dizziness the hardest thing to cope with and feeling sooo tired all the time, can't seem to find the energy to do much some days. I have started to use a stick now so hopefully I won't have to hold on to my partner every time we go out. I don't have any pain, but my partner has MS and suffers with "burning" so any ideas you have PattiTilden would be very much appreciated. As annoying as they can be, I have decided life is way too short to worry about other people and their ignorance. Does anyone else have a problem with going into shops and supermarkets, can't go in them at all now, just makes me too dizzy, even when looking at the floor as they are usually patterned, even the lines on decking in the garden make me off balance. Ladyntramp I have the same problem as you when laying down, the whole room can spin especially when I turn over from one side to the other, but no worse when sitting. Can't say I have had a "beckoning" sensation but my partner has, so he understands that more than me, so will ask him about it. Thanks again

Regards Heather

[Veteran250 in reply to 1940girl]

It sounds to me as if some of you ladies are suffering the affects of Vertigo, I have had it in the past but not recently but my symptoms were the same as yours.

Regards Don. xx