Ataxia Treatment Satisfaction

[ashleyn97]

Hello everyone,

I'm a student at the University of Florida conducting research on the treatment of neurological conditions. My team and I created a survey to better understand patients’ and caregivers’ experiences and satisfaction with treatment. The survey takes about 5-10 minutes to complete and can be previewed here:

ufl.qualtrics.com/jfe/form/...

If surveys are not allowed in this group, I will delete this post. Thank you for your time!

[Emily_kim]

i have done

[ashleyn97 in reply to Emily_kim]

Thank you!

[wobblybee]

🙂 I’ve reposted to a Facebook Ataxia Support Group.

[ashleyn97 in reply to wobblybee]

Great, thanks! I really appreciate it!

[Leona89]

Done. Thank-you for your interest in this condition.

[ashleyn97 in reply to Leona89]

Thank you for your participation!

[Litty]

Done and thanks - interesting x

[ashleyn97 in reply to Litty]

Thank you for your participation!

[trac67]

I HAVE COMPLETED THE SURVEY, GOOD LUCK WITH THE RESEARCH

[ashleyn97 in reply to trac67]

Thank you very much!

[ww-wibblywobbly]

Completed x

[ashleyn97 in reply to ww-wibblywobbly]

Thanks so much!

[Grapes12]

Completed

[ashleyn97 in reply to Grapes12]

Thank you!

[Susie1972]

Done👍

[ashleyn97 in reply to Susie1972]

I appreciate it!

[sunvox]

You should add a question related to the facilities willingness to explore non-Western and alternative therapies, and before you scoff at my comment I suggest you read my primary post and perhaps show it to some folks at UF:

healthunlocked.com/ataxia-u...

and also:

healthunlocked.com/user/sunvox

The single biggest complaint I have about ALL centers that treat Ataxia is that NONE are focused on the "low hanging fruit" that includes nutrition, physical therapy and exercise, and reduction of protein accumulation in polyQ disorders amenable to such intervention.

Joe in NY

[ashleyn97 in reply to sunvox]

Hi, Joe. Thank you for advice! I will read and forward on to my other team members. From my knowledge, the new facility will have nutritionists, OTs, and PTs to provide more comprehensive care.

[Cuds in reply to ashleyn97]

That's good to hear. A lot of ataxias have problems with mitochondrial health and expulsion of free radicals. A holistic approach is needed to identify the individual differences (as everyone is affected differently) and create bespoke programmes to assist wellbeing.

[mimosaholland]

completed

[ashleyn97 in reply to mimosaholland]

Thank you!

[haylzowl]

ive have completed

[ninotchka]

I was hopeful until I took the survey. It asked so many questions that are not relevant to Ataxia.

[Wedny1]

Done thank you