Morning all
I hope this finds you well. The sun is shining in Lytham St Annes which is lovely to see. Dare we believe that Spring has finally arrived?!
I am writing an article for the next Ataxia Magazine on this forum. It would be fantastic if I could include some quotes from forum users of where you heard about the forum, why you joined, why you feel it benefits you, etc.
Thank you so much in advance for your help.
Best wishes
Harriet (HarryB)
HarryB,I found the magAtaxia very informative, yes but apart from useful info re Friedrich's ataxia...and i suffer fromSCA 2, not much of a muchness.i suppose mental health NOT TACKLED IN IT.and one can get all the help possible.if NOT IN A GOOD MENTAL HEALTH PLACE, ALL QUITE USELESS.
Hi coat2003
Thank you for your reply and feedback on the magazine. I will ensure that it is passed over to the staff at Ataxia UK who put the magazine together.
My post was more about feedback on how you find this forum, to inform an article I am writing for the Ataxia Magazine. Do you have any comments you would like to make?
Best wishes
Harriet
The forum exceptionally good.always learn a tailor made issues like I was biting my own tongue.somebody else responded.very reassuring if you experience sthg odd, but NORMAL. regarding my ataxia, eg.thermal socks another example as started to feel, i suppose i had that as a young girl...COLD FEET.always handy tips, how to improve it.that is the most valuable...
Hi HarryB,
I discovered the forum through the Ataxia UK website. I quickly noticed there are some useful posts and engagement from many ataxia patients. I have the email alerts switched on, so I am notified of new posts - I usually manage to take a look at every post, and sometimes respond when I have something useful to say or I can relate to what is being said. The forum is a huge benefit to all users - I often hear others in the ataxia community mention HealthUnlocked!
Ed
Initially i was reluctant to subscribe as I had too many forums to interact with but I had to try. Now its my favourite. Keep safe and don't forget to smile 😊
🙂It’s so long ago, I can’t actually remember how I came across ‘Healthunlocked ataxiauk’ ..But I I suspect it was from AtaxiaUK website. For anyone unable to join a local Ataxia Support Group, this site gives an invaluable means of contact with others.
Think I found an advert on Facebook, then joined this forum. Have found it very useful hearing from other people in the same boat so to speak.You feel you are not alone, you can also pick up hints and tips along the way.
Wishing you all the best.
do your work for you? send me a questionnaire
Dear Sailor_Girl
I wonder from your comment that you think I am a paid employee of Ataxia UK. All my work for the charity is voluntary (and very willing), including moderating this forum and writing an article on it for the Ataxia Magazine, and I was just asking for a little help.
HarryB
considering the moon landings, why haven't I got better wheels on my rollator?
you tend to take information from it as required. Its very informative and more info on a particular form of the condition that affect YOU, a lot more than any GP or so called "health care professional" can or seems to offer, even if they say they grasp the basics... imho
Yes I agree with others in that you tend to take info that you require. I first used HU for info about another health condition so was familiar with the forum.It is reassuring that others have the same and other challenges to face. Especially as health care professionals lack knowledge in the condition.
It can be constrictive though as specific info and experience, ie supplements, dosage and company names, to name one, is not particularly helpful to others and cannot be shared. It might be miss interpreted and seen as advertising.
This I feel could be helpful to others.
Also, although the community is supportive, mental health is not really talked about.
Perhaps this could be areas that Ataxia UK might cover in the future. After all we can learn so much from each other!
Never much about idiopathic cerebella ataxia on here..... I do check in weekly.. 😘
Hi Susie🙂I’m diagnosed myself with Idiopathic Cerebellar Ataxia. There isn’t much information because...there’s little known..therefore not much discussion. Basically, I have general ataxia symptoms 24/7...and although my Cerebellar Atrophy is said to be mild, I’ve found symptoms have steadily progressed and worsened.
Things that affect me..
Poor balance - dizziness - variable eyesight - multitasking - lighting conditions - varying levels underfoot - loud noise - new surroundings - crowds - choking and swallowing - disorientation and brain fog - concentration - poor speech - writing skills - etc
I can still walk but not gracefully 😉 And I actually find sitting gives me a lot of relief from my Vestibular symptoms. Being on my feet is taxing..I feel disorientated, multitasking takes a big effort, and my eyesight is variable.
Thanks for listing your symptoms you are having with your ICA. I also suffer very similar symptoms to you. I was diagnosed in 2010. I find it very disappointing that there is no medical help available to help and doctors aren't really interested in helping us cope with everyday life.
I too have been given that diagnosis...it seems similar to SCA6, but who really knows? I have such a wide array of ailments!
I can’t remember when I came across the forum,it seems such a long time ago now,probably heard about it through Conference ? Only look at it weekly but find it so informative and comforting to know how others cope with their problems.
Dear all
I just wanted to say a huge thank you for your help and comments. It is always good to read that people are finding the forum helpful and useful, albeit in different ways. And your comments are useful for my article-so thank you!
Best wishes
HarryB
Hi Harriet, Like a few others on here I cannot remember how I got to know about the site, most probably through Ataxia UK, but several years ago. For a long time I have been recommending it to any/all members of the Support group I lead, especially to potential new members, as it is a splendid resource for information on the condition. Health Unlocked compensates (a little) for the fact that even most health officials are not-at-all knowledgeable on Ataxia.Best wishes, Derek.
I am newly diagnosed and I am finding it refreshing to discover the struggles I have had are those that are had by others too.
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