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About 30 years ago I was diagnosed by a Neurologist as having Progressive C.A. He said it would get worse as I got older. As I am 69 now and it has now got to a stage where I know that the last few years it has got a lot worse. Walking with a drunken gait has been added to with slurred speech especially on the telephone --people keep asking me to repeat myself which makes it worse and I cant get words out.My eyes have been good individually but together they don`t seem to focus. I can walk but uneven ground and steps I have to hold onto somebody. I have read on the internet about people with far worse symptoms that me but in particular somebody said they went from walking to a wheelchair in two years.

Can anyone say if there is any treatment or help at all . I live with my children in South Africa and there is no support here unless you have lots of money

15 Replies

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  • Hi Pashka, welcome :-)

    My deteriation has been slow but progressive,this has been over a similar period of time as yourself.

    I at the time of diagnosis I was told that the condition was mild, and it wasn't possible to specify the cause, it was Idiopathic.

    Over the years I've experienced many symptoms, such as you've described. Above all else, double vision combined with nystagmus and poor balance have made life a daily challenge.

    SCA, in which ever way it manifests itself, is difficult to predict as far as severity and progression is concerned. Although certain genetic types are better understood and have more likelihood of taking a predicted course.

    Although there is no cure for SCA, there are treatments and medications to help alleviate symptoms.

    I live in the UK, so obviously have no idea what you contend with as far as health service is concerned. All I can advise, is seeking the advice of a Neurologist, preferably one who specialises in Ataxia, if at all possible. A family GP may have some

    knowledge of the condition, if not they should be able to research it online and give you assistance.

    Try to keep your stress levels down, this has been shown to aggravate symptoms and make them more challenging. Exercise within your capabilities, remember that sitting in one position for any length of times usually encourages stiffness. Eat a reasonably balanced diet. Don't overtire yourself. Try to be optimistic ( I know it's not easy) and

    maintain your sense of humour :-)

    Also, you may find it useful to log onto Living with Ataxia.org. Members there

    are located all over the world, you may find you can connect with someone

    nearer home :-)

    Sites like this can be a lifeline, we all really understand :-)

    Best wishes :-) xB

  • Many thanks Wobblybee for your reply. I too don`t know the cause. From the internet I have read that there are 3 types of Ataxia----Trauma, Hereditary and illness (abuse of substances). My mother -who is 88 is quite unsteady on her feet and uses a walker (although that could be age related ) my grandmother (her mother) was also unsteady on her feet and was bedridden for 20 years and died at 88--in those days we lived on a farm and wheelchairs cost a lot of money.

    You are right about stress levels they do seem to make symptoms worse especially when its verbal confrontational. I do some exercise but not nearly enough, I tried gym but kept falling over and walking too far is like being drunk.

    One thing I don't understand is that I need to eat at least 3 times a day and often afterwards I feel better, even when I eat snacks I can walk better. I can't drink as even with 1 glass of wine I can hardly stand up.

    What`s annoying is that when you walk through a restaurant or in a shopping centre everyone things you are drunk and the looks and snide comments really get to me .

    Nice to talk to you

  • Dear Pashka013, I was diagnosed eleven years ago with Sporadic Cerebellar Ataxia (idiopathic/unknown cause/symptoms 24/7). I'm now 61 years young and my ataxia has progressed over the years.My ataxia symptoms sound like yours! I started using a quad-cane (when I leave my home) about five years ago as I fell and really injured my back. When I'm home I'm stil able to walk, extremely carefully, without it. If I need to, I just bounce off walls or furnature...,ha! Unfortunately, this has proven risky for me as I've taken a few bad falls in my home. Anyway, the cane notn only provides me more stability when out and avbout, it also serves as a way to let others know I have a problem. I also slur my speech and repeat myself constantly! I've not found any treatment, although I exercise for strength and balance and try to eat as healthy as possible, as doing these things seems to help me! I try to avoid stress and rest if I need to. I bought an Access Active Rollator on Amazon (on-line) and use it to take pleasure walks outside, I LOVE it and feel safe and secure when walking with it. My eyes don't always focus either, and uneven ground is not my friend! My neurologist has told me to stay as active as possible (easy for him to say...,ha!). I live in the USA in the State of Michigan. My best to you...,;o)

  • Thanks for your reply, its nice to have support. It seems to me that I must exercise more. I have no idea how slowly or fast this gets and this is the worry to me. We have no public transport here in South Africa so everything is by car and then walking from the car. Stairs and steps are my biggest problem, but I am careful going up and down.

    Keep Well

  • Some very good advice. What you describe is very typical for us all, so try not to let it get you too depressed. All you can do is fight it as much as you can. Exercise, I use a bike and rowing machine. Rest is crucial too. I try to have a 2hrs sleep every afternoon. Being in South Africa is hard but it is amazing what you can do yourself also Living with Ataxia has loads of members so I am sure there will be someone near by. Good luck : )

  • Thanks for your reply. I have tried the afternoon sleep but then cant sleep at night. At the moment I cant get to sleep before midnight. I know i have a slow condition but it seems to have speeded up the last two years. I dont really want to know but does it get worse faster and faster. I also have quite dramatic mood swings and lose my temper quickly especially if there is any stress. I am going to UK in June to see a Neurologist and maybe get some good news for a change.

    Thanks once again.

  • Good luck in June. My whole family and various friends and relatives have all seen and greatly benefited from visiting GOOD psychologists and talking things through. Might help with the temper? : )

  • Hi, my symptoms are similar to yours, I am now 76 and was diagnosed 6 years ago. I now use two walking poles on short walks, a wheeled walker for shopping and days out. I always use a stick in restaurants and on public transport both for security against falling and so people know I have a non drink related problem. (no alcohol for 5 years now, boring!!) I had a prism put in my glasses and this has corrected my double vision. Don't give up, there is every chance deterioration will be slow and managable.

  • Thanks for your reply. In a Shopping center I hang onto my wife but I have a walking stick when I am on my own. We have no public transport here so we have to drive everywhere. I think I must see about getting a prism in glasses as that sounds good. I wont give up and hope that slow is really slow

  • Hi Everyone We all seem to be in the same position don't we!! An Added problem is the typing of letters like this where our fingers seem to miss the right letter and also I find thiiiis happens Ha Ha One suggestion is to use elbow crutches when in public This not only steadies you but also stops any nasty looks from other people I use mine quite a lot and they allow me to get out for walks

    Good luck Tedjohnson

  • Yes your comment & everybody els's replies all sound like myself. I live in Spain and like yourself Pashka don't have access to any medical issues maybe relating to Ataxia Or age or Dystonia, which I also have and I fractured my spine several years ago. I find this site helpful also Ataxia.org. Although I can speak & understand Spanish it's very difficult to explain health issues so visits to a G.P. are really stressful (which is no good) so I hav'nt been for years. I need to go. I visit an Ataxia clinic in Newcastle UK, my next appointment is in January 2016 but Iv'e to have tests before that date, just waiting to hear. I was diagnosed with SCA in my 30's I'm now 58 & like you bounce off walls & things ha ha. My speech is more slurred too, especially on phone, my hubby answers phone and I hang onto him when we're out & about. Can't handle a stick but have a walker in the house, used twice so far. I can't see myself using it out (I'm too embarrassed really) silly I know but that's me. Hope you feel a bit better reading the comments, stay positive if you can, you're not alone. I understand not having access to lots of information but ther's a lot out there, well you got on here ha ha. Keep well and get as much info as you can.

    Best wishes

    Berejena

  • Hi Berejena, thanks for your reply, as I am new to all this I am flabbergasted by the replies I have had and the support is something else. I must admit that I have not told my friends the full story as I think it would sound like I want sympathy, they know i have a problem but I just put it down to `old age`.I also have not fully explained it to my family, not sure how to do it.

    I also have a stick but feel a bit of a fraud and have used it 3 times in the house. I have only fallen in the house as I am not thinking and either get up too fast or turn around too quick, all my broken bones have been received in my house.I will try and exercise more and certainly will be more positive now that I can talk to other `Ataxians`.

    You keep well

  • Hi Again Pashka and All, Yes, we all do seem to have common problems, even if our ataxia is of a different type/cause, etc.! Although, of course, I wouldn't wish ataxia on anyone, it's comforting to know i'm not alone in my jouney with this. It's so great to have understanding and support from others! I exercise for strength and balance in my home, making sure I hold onto something (like the back of a sturdy chair) or have something to grab (like the ledge between my kitchen and family room) if need be. My favorite exercises and stretches are the ones I do on my floor, as no chance of falling...,ha! I did join a wellness center, but it's a 20 minute drive from my home. Therefore, I don't get there to often. If I get there, it's good to use some of the weight machines, as well as the NuStep machine or treadmill. Like Litty said, a bike and rowing machine are great options too, as no chance of falling! Falling seems to be a common theme for us ataxians! As I said in my earlier post, my neurologist has always told me to be as active as possible and keep muscles strong! He says "if you don't use it, you lose it". Not easy, but nothing worthwhile is, right? My best to all..., ;o)

  • I too live in South Africa and have just been diagnosed with C.A two months ago after two years of being tested for everything with no luck. Eventually a neurologist in Johannesburg made the diagnoses. I agree there is very little, almost none, support in South Africa but this online support is great.

    I'd be happy to hear from you about anything you come across in South Africa.

    Keep well.

  • Hi Fiona , I also live in Johannesburg. I went through many tests and still they have not decided what I have, they (some) have just said its Ataxia but thats all they say--no cure--no support--no medication. Each test costs a small fortune so I have just given up with them.This on line forum is great and everyone is so supportive, I learn more from them than the doctors I have been to.

    How severe is your condition ?

    Look forward to hearing from you.

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