Fairly new to Ataxia

Fairly new to Ataxia

hi, I'm Peter from Knaresborough, in North Yorkshire. I was diagnosed last year, but only received a little bit of support from an ocupational therapist I met in Sheffield hospital, I had a bit of a mini stroke in 2010, and the doctors just shook their heads, as did the neurologist at Harrogate hospital, I struggle thru at work and go out and do farmers markets, but for how long for. I do NOT use a stick, but think I might have to after christmas, Just take my time doing things

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  • Hi Peter.

    And welcome. You'll get loads of practical advice here. It would appear that ataxia patients know more about the practicalities of living with ataxia, than most doctors.

    As for your stick, you'll just know when the time is right to start using it. But please don't wait until AFTER you've broken something else. I started walking with a stick before I actually needed it (luckily the few falls I'd had before then, resulted in no real physical damage).

    Iain

  • Thanks for the advice. I have not had any falls as such, but lifting my feet is the main problem, and as am single, its ok, I can know my limitations and just go steady. Am lucky that the 3 people at work know I am not very good , and do accommodate me well enough, work wise

  • You under Matios Had..

    Think he's brill

  • Hi Peter

    Professor Hadjevasilou runs a clinic at Sheffield hospital and conducts research into Ataxia, get your GP to refer you to him. There are also a couple of Ataxia nurses there to speak to. Because the name is a tounge twister he is also known as Marios.

  • his name is a tongue twister. I saw him last year, and he was the one who diagnosed a form of gene related Ataxia.

  • most of the info I had came from Ataxia . the doctors took 5 years to diagnose me . the brain scan showed cerebellar damage. I asked my family if they wanted to be tested as some types are genetic but they said they did not as I got it in my 70s and was fine up til then and if you are tested and they can identify the gene it can affect you in applying for a mortgage. I used a stick and found it hard to balance as I was so wobbly so I got a lightweight walker from Coopers on line - you can fold it and put in the car. I found the OT ( occupational therapist ) from the local council very helpful- she came round the house and pointed out where rails etc could go. I have a stair lift but try not to use it. I had to inform the DVLA but they said I was OK to drive at the moment but I have hydrocephalus ( too much water on the brain) as well as a benign brain tumour. I keep active, go to 3 exercise c lasses a week but I am having brain surgery in 2 weeks time and after that I will not be able to drive for 6 months which is a pain.I type most things as my writing has been badly affected. I changed the shower to a wet room as I could no longer get safely in the cabinet. you just have to think differently about how you can do the things you did without thinking. exercising is important.I find the local group meetings helpful as itis good to see other people with the same problems and you can say how you cope with various things and other people can have solutions. I found constipation was a real problem but i FIND THE LACTULOSE SOLUTION HAS helped. I also try to keep an eye on my weight as if you arent so active the pounds can pile on.I have real problems swallowing so the speech andlanguage therapist came several times and really helped- I still have choking problems sometimes and have to be careful what I eat so i don't choke- it can put you off going out for meals as steak and chips is a definite no no for me so I tend to look at the menu on line and then I have seen what is OK for me.above all I think it is important to see friends and family and do things you are interested in. I used to play the violin a lot in orchestra but can nolonger play but I still enjoy listening to music. If you feel down ask your GP to refer you to counselling- sometimes it is useful to talk you illness through and not go on about it with the same people that might get fed up with it. these are just my thoughts- everyone is different and copes in a different way. I keep positive and cheerful- it might be an act to start with but after a while it becomes second nature. all the best Sylviax- sorry it is so long but once I started I could not stop !!

  • thank you for that, its good info, will have to look at seeing the doc, and looking into other things

  • Hi Peter,

    You seem to be coping really well, Peter. I liked the picture. and can imagine that your work in N Yorks is very satisfying and gives you independence. It is really good that you are pacing yourself and that those that you work with are supporting you. Speaking as one who retired at 60 two years ago, I miss work- in a large college in Lancashire- every day. Keep going as long as you can and don't worry too much about needing a stick: I use one now but, in summer when my symptoms seem milder, can still walk a mile or two each day. Like you, I have had a single TIA/mini stroke but we just try to get on with things, don't we? I got my GP, who is lovely, to refer me to a neuro physiotherapist who came to my house and designed a half hour exercise plan which I could do in my kitchen. I use an old cross trainer in my garage to get the circulation going and to build strength, if possible. I have decided not to have genetic testing and, as you seem to be doing, to be practical and to focus on treating the symptoms.

    All the best!

    Margaret

  • Keep active eat well and most importantly keep talking I used to live alone so hardly got out to meet and socialise now I have terrible speech problems hope it helps Guy

  • Dr Marios is great better than all the neurologists I'd seen before put together nurse Diane is a big help I should have been sent here years ago

  • I have to make an app with my local GP, who is a very understanding young man ( I am 56), and will pass this site onto him, as he will understand it better.

  • Hi Peter😊welcome,

    Lots of positive advice for you to digest 😉 You're in good hands at Sheffield 🙂xBeryl

  • Hi I underwent genetic testing as as result of going to Sheffield, and was found to have HSP7 as well as Ataxia (bonus).

    Just keep active and stay positive mate.

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