Ataxa

[xray25]

Morning, i was diagnosed through my stoke consultant that i had ataxia, my doctor does not no anything about it, should i ask her to refer me to a specialsed all they are not many around the country or is there a speciialist nurse i could call

[wobblybee]

Hi xray25

You could ask your GP to refer you to your nearest Ataxia Centre, or if it's

too far for you to travel, a Neurologist at your nearest hospital who specialises

in Ataxia.

Or, if you look on AtaxiaUK for the list of Ataxia Centres, you could ring one of

them and ask to speak to the Ataxia Nurse. I've always found these nurses to

be very approachable, nothing is too trivial to ask xB

[xray25 in reply to wobblybee]

thanks wobblybee, your hair looks good

[wobblybee in reply to xray25]

Thank you for the compliment xray25 xB

[GEOFF1956 in reply to xray25]

Hi xray25 I went down the same road has yourself the neurologist was a waste of time which I asked for another neurologist which put me on to a nurse from ataxia. She has helped me a great deal and my advice see your GP ask to be seen by ataxia nurse because you have rights to see one, GPs when I moved to where I am now was not sure of the condition so I got in touch with Ataxia UK and they forward a practician booklet for the surgery clinic which the GP was so grateful and it was surprising what procedures they should do and places I should go, in my case now I have visits from the professionals who come. Remember if you are not fit and unable to do things you have a right.,section 10 and 12 human rights GOV health opens doors to situations like ourselves. If anything you need or some other help you need tell tour ataxia nurse she can help. " I'm going have a cup of tea now, and you know where your friends are we are all in this together cheers surp!!!!!!

[GEOFF1956 in reply to xray25]

Hi xray25 I went down the same road has yourself the neurologist was a waste of time which I asked for another neurologist which put me on to a nurse from ataxia. She has helped me a great deal and my advice see your GP ask to be seen by ataxia nurse because you have rights to see one, GPs when I moved to where I am now was not sure of the condition so I got in touch with Ataxia UK and they forward a practician booklet for the surgery clinic which the GP was so grateful and it was surprising what procedures they should do and places I should go, in my case now I have visits from the professionals who come. Remember if you are not fit and unable to do things you have a right.,section 10 and 12 human rights GOV health opens doors to situations like ourselves. If anything you need or some other help you need tell tour ataxia nurse she can help. " I'm going have a cup of tea now, and you know where your friends are we are all in this together cheers surp!!!!!!

[xray25 in reply to GEOFF1956]

thanks Geoff1956, I have since spoken to my GP, she is re-writing to the neurologist telling him to refer me to ataxia clinic as if she does it i will have to pay private, hopefully it will not be to long xray25

[GEOFF1956 in reply to xray25]

xray 25 Your GP needs to explain why you have to pay and if your GP his forcing the option have a word with your GP that you are entitled to have any medical service to your home which I do even the physiotherapy 3 times a week, Have you got a OT worker that you see, if so ask the OT what help and support you need has I'm only guessing here " but your health could have changed and need more assistance" so in that case you need more help. You should not have to pay it is like telling all who go to the GP you will have to pay, check it out even your ataxia nurse or phone CA, or social services OT because you will get the support that again his your rights. And ask the question to any of the ones if you contact them why was the said " you have to pay" and ask them to see into it for you, they will help.If you don't ask you get nothing.

GOOD LUCK.

[xray25 in reply to GEOFF1956]

Hi Geoff1956 you are right you get no help from anywhere, i have OT and council coming out on friday i have been waiting 18 months for a ramp stairlift and shower room, I do not think i will get itxray25, i have worked from 16 to 48 when i had my stroke and struggling to get any help, and reading about ataxia it can get worse.

[GEOFF1956 in reply to xray25]

Hi xray25 That is brilliant of that good news you have a OT coming on friday. Now make sure about how you are coping and the vital concerns you have had and the most important how things around you are effecting your health. A bit of advice put down all the problems you are having and how it is affecting you so that you don't miss nothing out when OT comes You have to be very open and make sure you tell OT about the private payment. Possibly if you have got to pay the OT could see into a voucher to pay for the cost. I've had items which legally everyone is entitled to. GOOD LUCK and again I'm truly pleased OT is coming AND REMEMBER WHAT TO DO.

[fantastic6]

Hi xray25

Do you have physio??. If so ask there. We are very lucky in that my daughters physio specialises in neuro physio.

[xray25]

no i have had physio bur for my stroke

[jurgen in reply to xray25]

physio is VERY important I feel

Regards