New to this
I have just seen a consultant a the Neurology Hospital in London. He thinks I have late-onset Cerebellar Ataxia. I'm 69 and active. What should I expect?
If it is SCA6, slow progression, my father's experience seems to be the more you ignore it the better. He is 83 walks with a wheeled walking aid, talks a bit weird but gets on with it.
How old was your father when diagnosed
First symptoms mid 40s, never really diagnosed, just family experience.
Do you have symptoms has anyone missed out x
😂🤐sorry Bev, I just had to laugh😉 But, you know how serious I am as a rule 😉xB
Hi peakerhome, Sorry to hear you have just been diagnosed with Cerebella ataxia. I'm 69 but was diagnosed at 50. You just do everything a lot slower than everybody else and possibly find some things are not easy to do anymore. So you just find another way to do it. Your balance gets lousy, you can be clumsy some days and fine on others, you may even be accused of being drunk (due to slurred speech or wonky walking), but we know it isn't drunkenness so we don't let it worry us because it is their problem for thinking that way. You can expect to get tired more frequently. Get a walking stick or some other visual aid so people can see you have a problem and they will be less judgmental. There is a lot of help out there if you look in the right places, but as I don't live in the UK I can't help you with all those kind of things. Until a few months ago I was still driving because as I always said my balance was only off when I was standing, and you can't drive a car while standing! Don't let the fact you have ataxia get to you, always look for the positive. Find things to keep you happy and laughing (like comedies, funny movies, good friends etc) and whatever you do stay active as long as possible. It's only painful when you fall over or hit the wall!
Thanks. That is a lovely reply. Some of the others are more disheartening!
Which country are you in?
I live on my own, though have children, and have always been very independent so I am dreading ‘telling and asking for help’.
Thanks. That is very helpful. You’re right, people do perhaps think I’m drunk when I lisp or can’t get a word out so don’t say anything! It’s easier to deal with the balance issues when expressing concern! No-one seems to have heard of Ataxia.
Currently on holiday in Turkey with lots of people and stairs/rocky ground. Drinking less wine, talking less, always looking for the handrail, but a good short-term diversion!
Hi Judy, I am English born but I live in Australia. I moved here in 1969 when I was just 21 years old and not long married. I really love living in Australia, I'm in South Australia (Adelaide). I have 2 children (1 of each) and 6 grandchildren. I also have step children, step grandchildren and even step great grandchildren (although I don't like to admit to the great grandchildren because that makes me feel old). I tell people we are not great grandparents just great ones - makes you feel good and brings a smile. I volunteer in a charity shop, but can only manage one morning a week as I seem to be doing things about 4-5 days a week. Like you I have always been independent and because I'm not driving anymore (and my husband has been unable to, for health reasons) I have had to rely on others a lot lately, and asking for help must be about the hardest thing I've ever had to do. Surround yourself with loving and supportive family and friends because they help to make your life so much more pleasant. Always look on the bright side of life ... so the song goes. Stay positive, keep happy and smile because then people will wonder what you've been up to. Let's keep 'em guessing eh! All the best, Barbara.
Hi Judy, welcome🙂 You might like to watch a video of someone talking about how they cope with late onset Cerebellar ataxia. Log onto ataxia.org.uk and type ' Coping with late onset Cerebellar ataxia' in the search box. Click on the first link🙂
Re the post between me and Bev. We've corresponded for a while, generally speaking we try to be as lighthearted as possible, and laugh as much as we can, it's our way of coping🙂
Many of us have to manage on our own, and nobody looks forward to asking for help. My children are adults, and they took my diagnosis in their stride, try not to worry about 'breaking the news'🙂
I have an upcoming appointment myself in London, usually I'm seen where I live in Newcastle, so I'm a bit apprehensive. My ataxia was diagnosed in 2011. 'Odd symptoms' had bothered me since my early 40s, and like many other people it was a long frustrating road to diagnosis, I was 61.
You'll find lots of interesting information on AtaxiaUK, and there are links to Ataxia Support Groups throughout the UK 🙂xBeryl
I was diagnosed when I was your age. I'm seventy three now. The condition is to some extent a bespoke one so the way it has progressed with me may not be the way it affects you. Anyway, this is what I've experienced. My ability to walk has decreased significantly. I use a walker [rollator] for solitary excursions but mainly rely on my wife's firm grip on my upper arm. It won't be long before I begin using a wheel chair.
Importantly, I acquired a 'blue badge'. This has made a difference to my life if only allowing me to park close to the supermarket trolleys so that I can totter to one and then work through a shopping list supported by a trolley. [Just the right height] When you can no longer go up ladders and paint the outside of the house, this helps self esteem.
My balance has of course deteriorated and herein lies a potential problem. BE AWARE OF THE AFFECTS OF ATAXIA. I wasn't and on twice I either ignored or forgot the nature of the condition. On two separate occasions I tried to move quickly and both times ended up in the local casualty dept being stitched up. One of those two was potentially very dangerous as I collided with the bonnet of a [then slow moving] car.
There's far more but you'll discover how this condition affects you. Good luck and use this site for advice.
Hi peakerhome , I'm so sorry to hear of your condition I do hope your managing ok, can you tell me when you went to Neurology Hospital did you have any tests done .im asking because I'm going to see a Neurophysiologist and I was wondering what the tests was , and was it painful lots love Alyson xxx
All physical, concentrating on balance, reflexes, sight etc, plus blood tests and MRI. No medicine, treatment/management plan given. Good to have list of questions in advance (I didn’t and was quite shocked never having heard of antaxia).
Thank you so much I really appreciate you answering me I have asked a few times but no one replies back. Xxx
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