Introducing myself

Hi my name is Maria and my husband has been living with cerebellar ataxia for the past 10 years. It was late onset diagnosis but he is still only 55. The deterioration has been quite slow until last year. He has had to give up work, stop driving, falls quite regularly and suffers terribly from headaches and dizziness. He also has to have a very calorific diet as he can't hold onto any weight.

I applaud all of you living with this condition, it is not easy but stay positive - it can make all the difference.

28 Replies

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  • 🙂Hi Maria, welcome 🙂 My own progression has been similar, my symptoms are slightly different but I also had to give up work because of the condition. Please give your husband my best wishes 🙂 xBeryl

  • Thanks for taking the time to reply Beryl. It makes me feel very supported.

  • Hi Maria, I also had to give up work but I'm now 73, retired by GP at 60years old...... still get out and about using an electric powerchair......Sending my regards and best wishes to you and your Husband. 🌺🌸😀

  • Sorry Maria...... my name is Don. 🌺

  • Hi Don, nice to meet you. So I purchased an electric scooter for my husband nearly a year ago. Unfortunately he hasn't used it. Struggling to get him to see that if he uses the aids-stick, scooter,word recognition programs etc, it actually gives him a better quality of life. Any words if wisdom you might have would be truly appreciated.

    Maria

  • Hi, friend has scooter and other aids but hates uses anything but stick . Diagnosed 10 years ago. Best thing she has done is try to follow advice from Tom Clouse. See " Reclaiming natural movement " and/or walking with Ataxia on internet. Not for everyone maybe but has helped her enormously. Good luck x

  • Hi Maria, Tell hubby I was stuck indoors for a while and was bored stiff but when The RAF gave me an electric scooter and I went out on it, it was the best thing I ever did.....

    my scooter had three speeds on it , so starting off slow to get used to it and then up the speed as you get used to it. xx🌺🌺🌺

  • Sorry to be so long responding, have been travelling for six hours, on holiday. xxx 🌺🌸

  • Hi Maria it is such a confusing,frustrating conditon.My progression has been very much like your husbands....40 yrs young,also had to give up work as a health care assistant (which I loved),gotta keep smiling 😊

    All the best xx

  • Hi Claire01

    Sorry to hear that you had to give up your job. It must be hard to give up something you love. Glad to hear you are still smiling. Hope you have lots of support.

    Maria

  • Hi Maria

    I'm Jacqi and my husband was diagnosed 10 years ago although looking back it had been there unrecognised for years. He has a Luggie but doesn't use it and it's too heavy for me to lift in and out of the car boot. He refuses a walker and walks terribly slowly and, to me, uncomfortably so we hardly go out. Indoors he staggers from one piece of furniture to another. He's also losing weight rapidly. It's very depressing as I have my own health problems to contend with however as he's now 77 I keep reminding him that we've been luckier than many who started with all this much younger.

  • Hi Maria

    My twin sister and I have CA and we are 52. We have had it for three years. I have a good caring husband to help me.

    You keep strong and positive too, we're sorry to our carers that we have bad days and good days xxx

    Carole

  • Hi Maria, i was only diagnosed in December although I think I have had symptoms for a while. For me, personally, I think my symptoms have progressed a fair bit in the last 6 months, which is a bit worrying. I now have a scooter although I haven't used it much. I feel there is a lot of support on this forum and wish you both well. It certainly helps knowing you are not alone with this horrible condition.

  • Hi Maria

    My husband too has late onset CA diagnosed at the age of 50 now 63.

    He is feed intravenously because of the risk of choking and setting off pneumonia. His speech is not good and I usually have to interpret.

    He cannot walk at all now and uses a power chair, which is much better for him than a scooter. Life has its up and downs and relationships are stretched to limit, but I admire him so much. He spent a huge chunk of last year in and out of hospital, which many times proved to be detrimental to his health and wellbeing, its hard to get it right.

    He never complains and is willing to try most things, archery, shooting, he loved swimming but has given that up, he goes to the gym 3x per week. I support him as much as I can, right now we are in Australia!!

    It's an exhausting life, we do now have carers/pa, but at one time that was more effort than it was worth, things are starting to come together in that area, so long may it last.

    For me I miss the conversation, but we often laugh at the most simplest of things, we both have a wicked sense of humour and he laughs at himself too.

    I hope you don't mid me asking:-Has the weight loss been investigated fully and found to be the ataxia? Does your husband see an expert neurologist? if there's any support I can give you need please ask.

    Regards

    Angelcake

  • I admire your husband's perseverance and attitude and, of course, both of your's relationship approach in dealing with CA. Humor is always an asset when dealing with debilitating illness. I have swallowing difficulties, partially paralyzed vocal cord. Walking is a challenge, and I use aids, but humor does help. My balance has never been very good. I've had CA from an early age, that has slowly progressed. Now that I'm in my 70's, I've also been diagnosed with Parkinson's, which adds to the neurological problems that I already have. So, I understand, just a little, with what you both are going through. I know there are some really difficult days, but we must continue on, and be thankful when we have a relatively good day that we can enjoy life a little. Best to you both, down under!!

  • Thank you. When age creeps in and brings along other conditions, it must make it even harder. You seem to have a good mind set and it goes a long way to help with coping. It's not something that is easily learned, so it's a bonus when it comes naturally.

    All the best to you.

  • ddmagee - I am experiencing difficulty in having to keep clearing my throat when speaking as I get very hoarse. I have seen a consultant who confirmed at the time that there was nothing sinister to be seen. I did go to a voice therapist for a while but the hoarseness has become a lot worse lately. It was interesting reading about your voice box. How did your problems begin? I have CA and am 71.

  • Hello Winch, I am your age also. A number of years ago, I would get a bit hoarse with any extended speaking or singing. Then I developed a limited singing range. About 30 years ago, after extensive testing, with MRI, brain scans etc., it was determined that I had an artery attached to the cerebellum and it was causing my cerebellar ataxia problems, by compressing an area of the cerebellum where the cranial nerves are. Additionally, recently, I've had swallowing difficulties, along with the hoarseness, and a weaker voice, over the last several years. So I was diagnosed with neuro-degenerative disease last year, that has been progressing, causing dysphagia and many more problems, unfortunately. I chew food carefully and swallow with my head tilted forward. I majored in speech in college, sobI understand the pharyngeal mechanisms involved in speaking, singing and eating. Breathing well, with deep breaths helps too.

  • Hello ddmagee1. Thank you so much, your reply was most helpful. Best wishes to you.

  • Hi Angelcake

    Thanks for replying. It sounds tough for you both and here you are offering me help and support. No wonder why you call yourself Angel cake.

    Weight loss has been investigated but we can find no evidence of anything else, thank goodness.

    Keep smiling, laughter truly is the best medicine.

    Regards to your husband.

  • My husband lost weight at one stage, he was diagnosed with hypothyroidism, but that normally makes you put weight on. No reason was found for the weight loss, his feed was increased by half as much again and he now maintains the weight he went down too. Strange how these things happen. I hope your husband starts to improve and sees the reasoning behind using aids and not only will it give him a better quality of life, yours will improve too.

    All best to both of you.

  • Hi Jacqi....... my name is Don.... I had to stop work in 2003, I had a scooter but have a powerchair now, tell your husband if he goes out on the scooter it will be the best thing he ever does, it will give him(and you) so much freedom. If you can afford it Jacqi get a hoist fitted into back of car, that's what my wife uses to put powerchair into car boot, My she now is 74 and I'm getting out and about and enjoying life.....I even opted smoking 10 years ago after smoking for 40 odd years....all he needs is self determination, show him this and wish him well from me. 🌺🌸😀

    Don(UK).

  • Should read......I am now 74 and getting out and about.....

  • Hi Maria

    Welcome.

    Tell your hubby to use all aids/scooter. Isn't giving in just making things easier.

    Like your hubby ive been deteriorating slowly. I was diagnosed with CA in 2003. Im 47 now. I understand it's autosomal recessive & i was born with it. I can see now i had problems early in life but it can lay dormant for yrs.

    Although im ill health retired, have decided to stop driving,can hardly walk & have other illnesses, i try & stay positive 😁.

    I have a boot scooter which I've had for 5 yrs. It's invaluable as it gives me independence & freedom. I couldn't be without that, my wheelchair & walker which i use constantly.

    I know it's extremely difficult using aids but hey if they make life easier why not?! It took me a while to accept all my problems but now i don't care if they help to assist then all well & good 👍

    Feeling in control as much as i can & keeping my independence as much as i can really helps me. I hate being a burden & reliant on carers but ...

    Tell your hubby to keep 😁 & ensure you look after yourself too. Where would you both be if you were both ill?

    As for weight gain - nuts are great i think. I eat brazils, almonds & walnuts. Walnuts are brill for mood too.

    Take care 😜

  • Hello Ginger

    Thanks so much for your wonderfully positive response. I love nuts so will try and swap some for the sugar stuff he often prefers..

    I know hubby will eventually get there and accept that life is still wonderful even if it does require a little or a lot of support. I just want to keep 😄

    Look after yourself too, keep going with you freedom and independence and just have some fun. 😝

  • Hello Maria ... have you tried a gluten free diet? I have be on a high fat low carb , gluten free for almost two years and I have my ataxia in check. I combine this with 15-20 minute of exercises twice a week. í am 65.

  • Be prepared for withdrawal symptoms if you stop gluten. I had unpredictable mood swings for the first 3 months without gluten. You need to go high fat if you cut out gluten, otherwise you will feel hungry alĺ the time.

  • Hi Pete

    Thank you for taking the time to answer my post. Can you tell me how the gluten free diet has affected your Ataxia? Hubby is very thin, eats 3500 +calories a day and cannot maintain his weight. He can now manage little exercise as he gets severe headaches. He loves carbs and it is the only way I can get the calories in as he hates dairy except cheese. He has had gluten intolerance testing too which came back negative.

    Maria

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