Ataxia Treatment Satisfaction: Hello everyone, I'm... - Ataxia UK

Ataxia UK
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Ataxia Treatment Satisfaction

ashleyn97
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!

25 Replies
oldestnewest

i have done

ashleyn97
ashleyn97
in reply to Emily_kim

Thank you!

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

ashleyn97
ashleyn97
in reply to wobblybee

Great, thanks! I really appreciate it!

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

ashleyn97
ashleyn97
in reply to Leona89

Thank you for your participation!

Done and thanks - interesting x

ashleyn97
ashleyn97
in reply to Litty

Thank you for your participation!

I HAVE COMPLETED THE SURVEY, GOOD LUCK WITH THE RESEARCH

ashleyn97
ashleyn97
in reply to trac67

Thank you very much!

Completed x

Thanks so much!

Completed

ashleyn97
ashleyn97
in reply to Grapes12

Thank you!

Done👍

ashleyn97
ashleyn97
in reply to Susie1972

I appreciate it!

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
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
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.

completed

Thank you!

ive have completed

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

Done thank you

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