My husband, 63, was diagnosed 3 months ago with Gait ataxia due to "moderate carabellar atrophy". He also has sensory loss in his right arm and leg.
He used to be a heavy drinker about 30 years ago but reduced this, over the last 5 years or so he was drinking 1 night a week on average. His neurologist said the damage was caused by the drinking and advised him to stop drinking (although the occaisional one would be ok) which he has, apart from 2 drinks over Christmas and 1 on New Year. We were told that, whilst we can't reverse the damage, cutting out alcohol would prevent it getting any worse.
In honesty, neither of us really have a lot of faith in the neurologist, he was very wishy washy and didn't seem certain of anything. He also seemed to fixate on the previous alcohol use and pretty much dismissed the other symptoms we had written out. He also gave us no information apart from stop drinking and see you in 9 months. Hubbys GP had given us more information but that hasn't been a lot.
Hubby has be doing well trying to fight the condition and trying to keep active and keep working (manual, self employed job) but he is deteriorating. Over the last 2 months he is always tired and will sleep for 12 hours plus over the weekend, as well as taking hour plus naps in the afternoon). He is in a lull with work at the moment so only working a couple of days a week but even without working, he is shattered all the time. He is also finding that he has having problems concentrating (fuzzy headed) and is starting to forget words when he is talking. He is having to miss out on events because he is so tired all the time and when we do go, it's rare we out past about 9pm. This is a big change to how he was even when he was first diagnosed.
So i guess what we are asking is what can we do? Where do we go from here? Or even just support and tips. He was always a very social person and this is obviously having a negative effect on his mental health.
Thank you for taking the time to read, I didn't realise it was going to be so long!
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Stumps55
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You need to go to an Ataxia Center where the Neurologist is well versed on this condition. A genetic testing or exome has been be conducted as to the type that Cerebellar Ataxia. There are many kinds. We have Episodic Ataxia 2, and am on Diamox for gait and balance.
I also receive physical therapy and Speech therapy as I slur my words.
He may need Neuropsych testing also with mixed up and forgetting words.
Not too long at all. Even really good caring neurologists who specialize in Ataxia and are clued up on the latest research don't know the answer, there is no known cure. Ataxia is unpredictable, no two cases seem the same, asfar as I can see (I was diagnosed with SCA17 in March 2017, I am 60) yes its harsh, but you and your husband have to deal with the effects day to day so you two are best placed and the only ones ultimately who have to manage your particular case. Neurologists and Ataxia centres will help you and add to your knowledge but they will not give you answers, and whatever they may give you and your husband, you both have to deal day to day. The fact that describing your husbands condition makes a long post is inevitable because of course you care, and is not something you need to apologise for. You brave person! Keep going! xx
Hi Welcome🙂 It’s seems as though the Neurologist has diagnosed your Husband with ‘Acquired Ataxia’. ‘Acquired Ataxia’ can be due to any one of a variety of things, illness , trauma, a side effect of medication, exposure to toxic chemicals, excessive alcohol intake, and more. Sometimes, in the case of alcohol, a person may seem to ‘plateau’ re symptoms, and not get any worse if they stop drinking.
The symptoms you describe are very common to most types of ataxia, they are challenging, exhausting and frustrating. But symptoms can vary enormously, and the rate of progression can also differ from person to person no matter what type is diagnosed. There are medications and therapies available that are known to ease certain symptoms, but not everyone feels the same benefit and it can often be a case of trial and error.
It can be very disheartening to consult with a Neurologist and feel ‘fobbed off’. One of the problems is, not all Neurologists have seen many people with ataxia, it’s considered rare. And, the Neurologists who do have a special interest are few and far between.
Is it possible to get a second opinion 🤔 As has already been said, an Ataxia Centre is likely to be the best place to see a Neurologist who has expert knowledge of the condition, and in the UK a patient needs to be referred by their GP. Most people who are diagnosed are seen at least yearly for a review, but this obviously depends on individual need.
Having to consider the possibility of giving up driving is one of the biggest upsets. But, it is a legal requirement in the UK to notify the DVLA when a driver has a diagnosis of ataxia. Although it doesn’t necessarily exclude a person from driving, alot depends on individual symptoms, and the Neurologist and GP will be contacted.
Consider getting in touch with your nearest Ataxia Support Group 🙂 Actually having face to face contact with others coping with similar challenges can make a big difference 🙂 You’ll find a list of Ataxia Support Groups on ataxia.org.uk
Additional information about ataxia can be found on ataxia.org The ‘Fact Sheets’ are very useful.
I personally found a lot of information regarding my condition on the internet-what to do next etc. I'm sure you will find out some very useful info.?? Good luck. and keep corresponding..
Hi Stumps55 I don't know where you live, but if you're able to get to the Sheffield Specialist Ataxia Centre you will get good care there. I agree with Wobblybee that it seems the neurologist has diagnosed your husband with aquired ataxia. Priya Shanmugarajah is one of the consultant neurologists there, and she has done some research on the relationship of alcohol to ataxia. You can see more information about the Sheffield Centre and how to get a referral on our website ataxia.org.uk/News/sheffield.
Your husband is quite right to keep physically active, this can help to hold back further physical degeneration.
Have you joined Ataxia UK? It's free and you'll get a quarterly magazine to keep you up to date with any research developments.
I have PN and muscle weakness and decided to stop listening to doctors..I think he should find a good chinese herbalist for energy and perhaps accupuncture...keep searching for answers and all the best
We are signed up to ataxia uk and hubby has been re-reading the literature they sent, there is an ataxia specialist near (we live no where near Sheffield unfortunately) and he is going to try and get a referral from his GP to go and see him. He is going going to contact the local support group and go along to that which I am sure will be a great help.
He is also going to ask his GP for a review of his meds, he is on so many at the moment and we think that the amatriptyline may be having an adverse effect on his concentration.
Perhaps naively, we didn't even think about contacting the DVLA so that's priority 1 for tomorrow!
Thank you again for all your kind replies, we have both, but hubby in particular, found them a great source of support.
I would encourage you to get all of the information that you can about your husbands condition, from doctors, the internet, or wherever you might find it, before giving-up. I believe that I developed Ataxia due to my prior over-use of alcohol. My Neurologist told me that, because our balance centers normally shrink with age, I would probably continue to get slightly worse with age, even if I stopped drinking. I have had nothing to drink for about ten years, but my symptoms of dizziness have seemed to have increased very slightly over the years. To my surprise, my greatest change over that time has been an increase in my desire to sleep. If given a choice, I think that I would rather get sleepier than dizzier. I wish you luck in finding some answers to your husbands problems.
click on all of sunvox posts. he has a great wealth of helpful info for ataxia, citing lots of research and suggestions, which he always reminds us to verify, and says Exercise is key.
I acquired a jogger stroller so that i can hang on with both hands, tie my dog to the side and now doing 20 blocks each day. i sleep better, eat better, and in a much better mood.
Balance is getting better. BTW, my dog and i are both seasoned seniors.
Here is my two pence worth from my research. Ataxia is a symptom rather than a specific illness - which is why there are so many different causes (stroke, tumour, damage from brain surgery, brain injury, cerebellar atrophy, reaction to dietary gluten, coenzyme q10 deficiency, vitamin b12 deficiency, channelopathies etc) some of which are environmental, and some genetic. Of the genetic ones some are hereditary and some occur spontaneously. Some are temporary, some are progressive, and some are permanent but episodic. It can be very complicated and time consuming working out which one someone has! Depending on the underlying cause there are sometimes treatment options, for example gluten ataxia can be very well treated by dietary changes, and some have no real medical treatment options. Ataxia as a symptom is technically just motor and co-ordination issues, including slurred speech and vision issues, but cerebellar dysfunction can also include a whole range of other cognitive symptoms like short term memory, strategy, problem solving and language issues. If the underlying cause of the ataxia effects the whole cerebellum (like Episodic Ataxia, Cerebellar Atrophy etc) then these other symptoms might also be present. If it is a focal cause, like damage to a specific region of the cerebellum from injury, stroke, tumour or brain surgery, then it may be restricted to just the motor and coordination symptoms. There are lots of non-medical treatment options which may apply to your husband - such as Physiotherapy balance exercises, gluten free diet, coenzyme Q10 supplements, gaze exercises etc - but you must get your neurologists advice as they may be detrimental if applied to the wrong underlying cause. If your Dr is ignoring the list of symptoms and using the alcohol as an excuse to catch all symptoms then that isn’t helpful, and you may wish to seek a second opinion. Good luck! Xx
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