I wonder if anyone can help. My mums has recently been given the above diagnosis, following a year of back and forth. Neither of us had heard of it before, and there doesn't seem to be much in terms of support or treatment being offered from the medical profession. I've been doing bits and bobs of reading up on this, and wanted to ask some advice from you guys on the best way to help my Mum. Her mobility is badly affected, but she can walk with a stick or with assistance. She was so independent and loved her job, but now she's not working and I feel this is causing anxiety and depression as well. Does anyone know of anything that helps? Vitamin E? Certain types of exercises? Any help would be gratefully received....
Thanks, Nicola
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happynicnac
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Contact AtaxiaUK, they'll send you an information pack, and a GP copy. Log onto ataxia.org.uk for a list of ataxia support groups and general information. Log onto ataxia.org the National Ataxia Foundation for additional information.
It would benefit your mother to be able to meet and talk to others coping with similar challenging symptoms😊 We all cope with poor balance and lack of co-ordination, there are numerous other symptoms associated with Cerebellar Ataxia, including vestibular problems but not everyone is the same or experiences symptoms to the same degree. As it happens, I have eye problems (double vision, and nystagmus 'bouncing vision'). These symptoms definitely make poor balance worse. Vertigo is something else to compromise balance, sometimes this is caused by Benign Paroxysmal Posterior Vertigo and can be helped by the Epley Manouvre.
It's not uncommon to experience depression, a low dose of antidepressant can really help to get everything back into perspective. Hopefully it would reduce stress, which often makes symptoms seem harder to cope with.
There are medications that are known to alleviate certain symptoms, each individual's ataxia can be slightly different, so she would just have to see what actually worked for her.
Encourage her to keep as active as possible, she'll probably find it much easier to sit still but it doesn't take long for stiffness to set in and that makes balance worse, it can lead to falls. A neurophysiotherapist can offer help with exercise programs.
Vestibular Cerebellar Ataxia can seem worse in certain conditions, poor light, bright fluorescent lighting, patterned flooring, crowds etc. I can't look along a shelf of books, tilting my head and glancing along a shelf is impossible, I feel dreadful and focus goes completely.
Outdoors, kerbs can be a real hazard. Lack of perception of depth, and poor spatial awareness make progress slow, often a kerb doesn't seem obvious, it's hard to anticipate the drop.
Generally speaking, multitasking becomes a thing of the past but patience is rewarded by staying safe😊
I was a fit healthy 45 year old and in July got symptoms of Ataxia. I am a mum working full-time and always busy. It's been tough as I have had every symptom going and was using a cane. I have yet to see a Dr who could help let alone a neurologist I have had some really bad days. This site is really supportive especially if feeling a little low. We don't have all the answers but keeping active is far better than sitting still, I have tried Acupuncture and herbal remedies to alleviate some problems. Keep smiling, keep busy.
Beryl has given you some good links also have a look at Ataxiafightback.wordpress.com for some simple exercises for your mum. Keeping active is the best medicine without doubt.
Always happy to chat if you or your mum would like that. Send me a message and I'll give you my number.
Can I suggest you contact Ataxia UK and have a chat on their helpline They have various literature and also send out a quarterly magazine all free but they always welcome a donation
Ataxia is one of many illnesses for which there are no clear cut cures but many of us try different 'things' and very often there is a local support group which Ataxia UK can put you in touch with
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