Ataxia UK Annual Conference 2017 and HealthUnlocked breakout session.

[HarryB]

Dear all

Myself and Sue Millman (CEO of Ataxia UK) will be hosting a breakout session in the afternoon of this year's annual conference in Stansted about HealthUnlocked and this forum. Amongst other things the session will be used to discuss the forum's benefits, how it is used, and how we administer it. Is it user friendly? Are there any improvements that could be made.

It would be great if we could have as much input into this as possible. If you are coming to Conference it would be lovely to see you at the session. If not I would be really grateful if you would answer these three questions -

1. What do you like about this forum?

2. What do you dislike about this forum?

3. What improvements, if any, would you make to the forum?

You can reply in answer to this post or by sending me a private message, if you would prefer.

Thank you in advance.

Harriet

[isabelalfaiate]

Dear Harriet,

1. I like this forum because firstly I saw that I was not the only one with Ataxia.

I have found the sharing of experiences very beneficial and the advice given is also great. I found it very usefull when we have questions. Actually I have seen myself in many of the questions posed by others and the advice given was very usefull.

2. There is very little I dislike, but sometimes all the difficulties shared could be balanced with something positive so that others might be inspired

3. The forum is great as it is, it brings us ataxians together, it helps to clear any doubts. Being the positive person that I am, I would like to see more positive reports, I think it would help everyone as well.

Good luck for your conference.

Best Wishes

Isabel

[Ilide]

Harriet,

This forum is fantastic! My daughter,Paula has Ataxia and if it wasn’t for the forum she would not have met you which made her feel less alone and more positive! Carry on the good work!

[HarryB Administrator in reply to Ilide]

Thank you!

[neta]

I like this forum because it is easy to use and the readers tend to have good advice but I dislike this forum because there is only very occasional weigh ins from doctors or pts--almost never actually. There is also a dearth of practical info such as flying by airplane etc. Good luck N

[HarryB Administrator in reply to neta]

Thanks Neta.

[wobblybee]

🙂 I would like to see a link to 'Medications for Ataxia Symptoms' and a link to 'Treatment for Double Vision'. Most people visit an Optician for advice about double vision, if the condition is mild, at this stage it's iinvariably managed by incorporating a Prism into a pair of glasses. In difficult to treat cases, unless the Optician suggests it, people can be unaware that referral to an NeuroOpthalmologist can be beneficial. 🙂xB

[neta in reply to wobblybee]

I agree. Just recently I began to see double. The "normal" eye dr. said my eyes were fine. The neurologist says I have to go to a neuro-ophamologist

[DOTS01]

Being new to organization I dont feel I can comment onthe effects of the form. BUT ALL IS POSITIVE SO FAR.Ahappy bunch but very frustrated......understanable.

As for suggestions, they are based on me but I remain upbeat due to my nursing background.I think that because Ihave a bit more knowledge I feel Im a step ahead and also a bit more confident when sat infront of some healthcare proffessiona;s....NOT ALL.So my suggestion would be a space that gave info on different medical issues to give added confidence to those that feel they need it. Topics could rotate monthly and people can take what they need