Hi everyone,
I hope you are all OK.
I love seeing the community spirit on this forum and am writing an article for the Ataxia Magazine about HealthUnlocked's benefits.
I would love to hear your thoughts on HealthUnlocked.
What do you get out of it? How long have you used it? Does it help you connect to people? Do you recommend it to others with ataxia? Etc!
Please comment below if you would like to, or email communications@ataxia.org.uk. Thanks!
Maybe not the “nicey nice” comment you want but here is a safe and sensible place, I just started trawling for chat/friendship sites and there are an awful lot of dodgy ones, as I’m sure everyone is already aware.
🙂 HealthunlockedAtaxiaUK was my first experience with an Ataxia Support Group. That was way back before others sprang up on Facebook, and it was a revelation being able to interact with likeminded people who were also looking for information about this rare disease.
Thank you wobblybee, that's lovely to hear 
I was diagnosed with idiopathic CA in July 2017. I joined HealthUnlocked in March this year after a recommendation I received at an Ataxia UK support group.
There are over 700 different communities on HealthUnlocked apparently and I wonder how Ataxia compares to other communities i.e. are there ideas, initiatives etc that should be considered to make the experience on here even better.
That’s a good point. Maybe leanna_ataxiauk will add interesting stuff...
I've had a bit of a surf around some of the other communities here and I think we're very well served by Ataxia UK. I'm sure Leanna will continue to come up with good ideas and I'd like to echo your point that this is a safe and sensible place. Above all it's easy to use and it works.
Yes, easy to use and looks good, too--a minor point, I guess, but I do like it when a site is--er--shiny and sparkly
Being diagnosed with Cerebellar Ataxia, and Parkinson’s, I have used Health Unlocked blogging quite regularly! I am most thankful, for the communication with like-minded people, ‘ battling’ the same problems, or very similar problems, that comes with having these chronic ailments! It is very difficult to deal with many fluctuations, of different symptoms, with one who is afflicted with Ataxia and/or Parkinson’s. Only people that have, and live, with these neurological maladies, and, sometimes, their caregivers, every day, fully understand, and thereby, are the best source, of how to cope with dealing with, and, practically, able to deal with the ups and downs, of everyday life, dealing with these particular ailments! I receive many good tips, and, sometimes, I comment, with others, concerning advice, and gathering information about Ataxia, and Parkinson’s. A bonus, is when I need support, I can always go to Health Unlocked, and communicate with my “ Parkies “, and Ataxic friends!
“Parkies”
Some people with Parkinson’s Disease, refer to their PWP friends, as “Parkies”, when blogging.
Leanna, the site is vitally important for many and varying reasons. For some its primary value is that it ends isolation, for others it's a source of advice on coping with our condition. Its 'open forum' structure allows for all this and more. Most days I visit this site, if only briefly but when I've done so I feel less alone. I'm reminded that there are many many people out there battling the same problems as me and like me when they've read what interests them they're going to close the lid on their laptops and get on with life.
“Isolation”—I certainly feel it during Lockdown, I’ve only been out a few times since March.
Great tips from other sufferers who totally understand.
I love this forum. I have found it so helpful for advice, tips and support.
To be honest this site helps me feel that I'm not alone in this journey, which makes a huge difference to me. There are no relevant support groups or specialist ataxia centres here in France. Years ago I did try a MS support group, but I felt that I was quite different to the people in it with MS.
This forum is just great 👍 xx
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