What did everyone think of the most recent editi... - Ataxia UK
What did everyone think of the most recent edition of the Ataxian?
Just received our copy and had a VERY quick look. I particularly like the big print because I do not get my new glasses till Saturday and I can read it! I do like the colours and layout and obviously the content.
I particularly like the photo of the Herefordshire boys who completed the Coast to Coast walk to raise money for Ataxia UK. They are real sweeties!
I noticed there was no questions and answers section. I like reading this part. And doesn't Harriet make a lovely front cover snapshot?
Just out of interest, could someone tell me who the other two people are in the front cover picture.
Hi Iain
Glad you find the Q&A's interesting. Sometimes the content varies a little, but we will definitely return to the Q&A's!
And well said, Harriet makes a great cover star 
Thanks Iain! I like to think I scrub up reasonably well!!. The other girl is Rachel Harrison (the daughter of the Chair of Ataxia UK) and the guy is Adrian McBreen who is from the Republic of Ireland but lives in Brighton. He has a cerebellar ataxia.
Harriet
Hey I did not realise we had a star in our midst! Very nice photo!
I was intersted in the section, 'Cerebellar ataxia and CoQ10. Not sure what sca blood tests I have been tested for and would like to know what test number CoQ10 comes under? I have an unexplained ataxia and any other information on this would be grateful thanks.
Hi Iain
'Ataxia due to CoQ10 deficiency' is a totally separate disorder to the SCAs and the testing for each, although both blood tests, is completely different. You would require a specific test to look at the level of CoQ10 in your body rather than a genetic test to diagnose and confirm a SCA.
Harriet
Thanks Harriet. Don't know if I have been tested for this or not?
When are you next seeing your neurologist Iain? You should write it down just now so you don't forget.
I haven't had a date sent to me yet. I'm still seeing a Neuropsychologist though. This was followed on after I was an in-patient at the SGH. I was asked if I would like any Neuropsychology follow-up appointments and I accepted. My own GP recomended it when I mentioned it to her. A date to see my Neurologist may be made after I finish in the Neuropsychology department I guess?
I don't know if a date will be sent to you Iain. It would be best checking with your GP. There is no reason why you shouldn't see a neurologist and neuropsychologist at the same time.
Your GP may be able to help you with issues and questions about your diagnosis (it would be great if he/she can) but it may be that your neurologist is best placed to answer them.
I hope you do not mind me reading this but I just thought I would say how good neuropsychologists are.
As a family we had a few problems a couple of years back after a really insensitive Biology GCSE lesson about genetics, and were referred to the one. He was brilliant with sorting out the immediate problem and also carried on seeing Ian for a while afterwards.
Read and comment away Lit! I saw a neuropsychologist recently when I was in the thinking stages of retiring form work and I can't tell you how helpful she was. I only saw her once but she was incredibly supportive. If I was in the position that I needed to see her or any neuropsychologist again I wouldn't hesitate.
I really liked the 'meanwhile in the office' bit on p3. It's lovely to read a bit about the staff and see their photos. I especially liked 'meeting' the two volunteers!
I have not received any copy of Ataxian since moving house , I did e-mail them with my change of address but have had no feed back since
December, I moved on November 29th and emailed and asked how to change my details on Ataxia uk's site in December when I got reconnected to the internet.....so have no idea how or where things stand with my contact details etc on myAtaxia UK . so any help would be appreciated
