Millar 69

[Pjpuk]

I am a57 year old man used to work in a fencing firm was as fit as a butcher’s dog before covid started new job before Covid took hold we all went out on ferlo but I txt my boss because I was always used to working i don’t drink or take drugs have had all Covid jabs but have went down hill badly went to doctors and from then my life has changed had mri scan done been to hospital a couple of times had back top done and I have been told I have cerabeelm ataxia

[pinjem]

If you aren't already, go to a specialist centre like Sheffield ataxia unit, they are excellent. Ask your GP to refer you, it might take some time so sooner the better unless you are confident with your current neurologist.

[Pjpuk in reply to pinjem]

I ain’t sure about any thing i am waiting on a test i think you call it gino they have sent it to London said it would take a couple of months i think its to do with your dna

[pinjem in reply to Pjpuk]

That's good, it might rule out some ataxias. A diagnosis hurts but also can help you. I was 57 and very active too when things began to change for the worse. This group helps, don't hesitate to ask questions and call the ataxia helpline when you need to. I did and it helped just being listened to, ataxia is quite rare and sometimes can be misunderstood.

[Pjpuk in reply to pinjem]

We’re do i find the number for help

[pinjem in reply to Pjpuk]

Ataxia UK, look at the website for all sorts of relevant things but this is the number and email: 0800 995 6037 or [e-mail]

[7151]

Hi i must have had antakia for yeàrs Just slowly got worse went from not being able to stand up still to walking stick handicapés badge ..took 3 years to give à médical name to which... antakia i have ( there are 8 forms ) but makes no différence there is no cure ...some times i get very scared i can no longer hold Kids in my arms but we have to accept it and fight it ..in thé house i hold on to fourniture..they say i m not allowed to go upstaires but i crawl up ..i have à walker with à lovely blue basket ..i ll fight it wont let it do me in there are worst illnesses out there ..my Kids have adapted my house i have à home help twice à week thé very only thing that helps is pysio ..keep moving its à hard battle you ll get used to it ( luckily i can still drive ) good luck x

[Ostap]

Many GPs have limited experience of Ataxia. Diagnosis can be based on symptoms alone which can ultimately be inconclusive. Even with support it can be a lonely place with Ataxia. Good luck!

[Sea_]

I just started going downhill last year and have been diagnosed potentially sca45 but waiting to get whole genome sequencing in London as unavailable in Northern Ireland.

Sorry about your diagnosis.It definitely is a shock and quite scary .I still sea swim but my outdoor active life has had to change. Not in the plan like a lot of people but be kind to yourself and find a way to do what you enjoy . People are very helpful and knowledgeable here I find.

Good luck

[Ukalimcn]

I am 54 , diagnosed with Cerebellar ataxia 2019. Stay positive although very hard, everybody is different and keep exercising.

I am still a nurse, yes I walk funny and get tired at end of day but I really believe a positive attitude helps.