Ataxia group meeting, Newcastle upon Tyne

[jomo50]

Many thanks to Tina Thatcher for organising the meeting at Swalwell Holiday In. It was good to meet people with the same problem as me and to start off a discussion. I really look forward to the next one in January. Tina also brought across some useful information. I think the formation of groups like this can only help towards eventually finding a solution to our problem.

Many thanks to Wobblybee for offering to take on the bulk of the administration work.

Well done to everyone there. We are not alone.

jomo50

[fangtasia]

Cool, I hope it grows and we find a solution. Think it will be very beneficial to all especially those who attend .

I'd like to offer my services to the group, as the saying goes a problem shared..........haha

[february]

I live in the States and attended the National Ataxia Foundation (NAF) conference in Detroit, Michigan this past March. I met many wonderful people with different types and degrees of ataxia. It helped me feel "less alone" with this! So glad your meeting was successful! ;o)

[jomo50 in reply to february]

Hi february

Thanks for your reply. you are correct, meeting other people in the same situation does help you feel less alone. If anything comes from our meetings or if we discover a surprising breakthrough, I will let you know. If several countries get involved we can put the problem of ataxia firmly on the map to let others know,

jomo50

[Hidden]

Good that we've got another group being started. Well done to all!

If i can help, i most certainly will; I know the value of having made friends and linking up with them. Happy too to do the equivalent via email. Our GALS group (Girls, gluten, ataxia, laughter and support) is great!

Im wondering if we could do something similar and call it a PALS group- a mixed group and not just for those with gluten ataxia. Let me know if you're interested.

[jomo50 in reply to Hidden]

Hi FeelingOurWay

Many thanks for your reply. G.A.L.S. sounds a great group to be part of, As I can't make decisions for our group alone I will put your suggestion to them at the next meeting in January. In the meantime keep on enjoying yourselves.

jomo50

[wobblybee]

Hi Taryn and John, it was great to meet you! I'm sure by the time we meet up

again we'll have lots of things to discuss. Just so you know, I'm already part

of the GALS group and can recommend it! It's mostly lighthearted but we also

give each other unconditional support, and it's surprising how much can be

learned about Ataxia.

BTW, just so everyone knows, our support group (Gateshead) is completely

newly formed, all are welcome on 11 January. xBeryl

[jomo50 in reply to wobblybee]

Hi B . This comment has nothing to do with the ataxia meeting group but to your information on squint surgery, I had one of my eyes done yesterday, valentines day, and though my eye is still very sore I can see much better. I had some spectacles made up prior to the op at Newcastle R.V.I. which are much thinner and lighter without the prisms (35)

Many thanks for this info it was invaluable/

Hope you are keeping well

J

[wobblybee]

Hi J🙂 I’m so pleased you’ve such had a good result 👍 That was a very strong Prism.

[jomo50 in reply to wobblybee]

Thanks B for all your help nd support. J

[jomo50 in reply to jomo50]

Hi B .

, Thanks to your information, my squint surgery so far has been very successful, I am very grateful, because of this would you mind if I shared this information with others.

Once again Thanks

J