Hi my name is carole and I have celebellar ataxia. I currently work as a staff nurse in Scotland. I am very interested in having a chat regarding mainstream knowledge of ataxia.
My email is carol369@sky.com
Please feel free to contact, thanks carole ⭐️
Hi Carole ,my name is Stacey,I live in Licolnshire ,and used to be a,palliative care health care assistant but had to give it up a few years ago. I too have cerebellar ataxia ,diagnosed 2 yrs ago,? Gluten ataxia .Have you only recently been diagnosed ? .It has taken me some time to accept what I have,but I live each day the best I can,and if you have an off day then take it easy and don't feel guilty ,are you still working ? Regards Stacey,ask any questions I will try to answer x
Hi Stacy, I was diagnosed when I was in my thirties however I have managed very well until the last few months. I was doing spin cycling for years and weight training. Three months ago my left leg started swinging out like a pendulum ! When I'm walking,my left foot also started to go sLightly inward. I didn't know what was going on. I went to go who thought I'd done damage at spin! Gp really don't know anything about ataxia. I was really down. I was seen by my prof. He told me it was musco skeletal but obviously with the ataxia it was putting my pelvis and left leg of balance. At last I got app with neuro physio who has told me it is a weakness around the hip area. She has said due to the poor balance I've had all my life, I'm now 41. I have been using one hip more than the other. Now I have to build the muscles up around the hip. Yes I do still work but considering cutting down. Manager won't be happy. I work in a private setting. I do twelve hour shifts with no option to cut down. I do feel guilty so still haven't approached my manager reg cutting down to two shifts a week as opposed to the three I currently do. I'm getting fed up now. I have always had a wobbly walk but now I have a wonky leg as well.😉
Would it be ok to contact you carol our symptoms sound very similar.
Hi Carol
I have an idiopathic cerebellar ataxia. I am currently 40 years of age. I was a doctor in Glasgow until I took early retirement in August 2012. I had always worked full time but eventually went to occupational health at the end of 2010 as I was really struggling, particularly with fatigue and my balance (I had started to fall in front of patients. Fortunately no-one was physically injured but I knew it was only a matter of time). They recommended to my Clinical Director, among other things, that I reduce my hours but their response was this couldn't be done because of 'current service requirements'. To cut a very long story short I went to the BMA for advice and it was them who suggested early retirement. After I got over the initial shock of taking retirement at the age of 36 I realised it was by far the best option. Ironically when I suggested this course of action to my Clinical Director she was very supportive.
I have never looked back. My annual income has significantly reduced (I am now on an NHS pension) but my quality of life is so much better. I have concentrated on losing weight through looking at my diet and have started pilates. I had never done any formal exercise before. I have the time to pace myself much more and try to manage my fatigue more effectively. I wouldn't have been able to do this if I was still working.
I am not telling you my story to suggest you should do the same thing at all. But what I am saying is you should not feel guilty at all about talking to your manager to cut your shifts. I would talk it through with your neurologist as their support is essential. To be honest part of me did feel guilty before I went to occupational health as I felt like I was letting people down. But having been through what you are going through at the moment, I now have the attitude it is up to me how I deal with and manage my ataxia and if I don't look after myself, no one else will. The position you are in is extremely stressful but dealing with it, however hard, will make you feel so much better in the long run, both mentally and physically.
I have absolute sympathy with your hip problem. I have had problems with my right hip for years which is thought to be a mixture of posture and the nature of my gait. My recent weight loss and Pilates has helped somewhat but I have resigned myself to having to put with it. Not ideal but there are much bigger problems I could be faced with.
Knowledge about ataxia within the medical profession is poor. Ataxia UK is constantly trying to address this and there is a section for healthcare professionals on the Ataxia UK website which can be accessed via the menu at the top of the homepage ataxia.org.uk. If you have any problems/questions please feel free to post them on here or contact the Ataxia UK helpline on 0845 644 0606.
Best wishes
Harriet
I too live in Scotland Carol (Cumbernauld) and have Cerebellar Ataxia. Your welcome to ask anything. There is a very nice administrator on this site called Harriet. She is a qualified Doctor who also has Cerebellar Ataxia. She will be able to give you good professional answers and advice on ataxia. Good luck.
Thanks so much 😀
Hello Carole
I am a male, aged 48. I have Cerebral Ataxia but it was only diagnosed in 2014, and the type confirmed in early 2015.
In my mid to late 20’s I didn’t feel ‘quite of this earth’ so for a couple of years I went to the gym regularly and tried a few diets and drinking loads of water. Nothing seemed to help and I still had the same feeling but I noticed that my general movement was not as good as it had been. Eventually I went to the doctor who put the problem down to an earlier back injury (I broke it), during MRI scans we discovered that I had also suffered serious neck trauma (probably broken) and the feelings were put down to a combination of these two events. I likened the feeling to having a pint each year I was effected. Over the years the symptoms have got slowly worse and been put down to the back, neck injuries, ME, a build-up of large toxins in the body etc- over the 20 year period I tried everything that was suggested, both by the NHS and privately. Eventually I paid to see a private Neurologist who I had new MRI scans of the back, neck, and brain, loads of blood tests, a lumber puncture operation and various eye and hearing tests – she concluded that it was Late Onset Cerebral Ataxia and referred me to the Ataxia Unit in Oxford. They did some more tests and took more blood and confirmed the diagnosis and told me that is was due to a faulty gene that I had been born with.
My major symptoms that affect me on a daily basis are massive instability and dizziness along with a constant feeling of nausea.
Initially the dizziness only affected me when standing so I was still able to drive, but in March 2015 the dizziness affected me without warning while I was driving home from work. I have not driven since then and when my photo license came up for renewal last July I wouldn’t re-new it.
Through all of this I worked at least a 60 hour week but in 2013 I cut my working to 4 days a week and in June 2015 went down to 3 days a week. I stopped working at Christmas 2015. I can now only walk about 50 meters as long as the ground is solid and even – anything longer I use my mobility scooter. I have tried over the years loads of things for the nausea, most of which didn’t work, but for the last 18 months I have been having acupuncture for the feeling every 3 weeks and for some reason it seems to work – it doesn’t take the feeling away completely but I makes it manageable.
It’s not all doom and gloom though – disabled access to various evens are great. In the last few months I have been to The Race of Champions, The Rugby World Cup, Morgan Motor Car Company, a couple of rugby matches in the 2016 6 nations, Gaydon Motor Museum and in July I am going to the F! qualification at Silverstone and the following day to Hyde Park to a concert headlined by Stevie Wonder.
I won’t pretend it is all easy and symptoms become progressively worse slowly over time – but I can think of worse things! Just have to get on with it and make the best of it, enjoy yourself as much as possible and keep smiling.
Regards
Jason Bennett
ataxia
Ataxia without speech problems
ataxia
Ataxia
Dizziness part of ataxia
