Ataxia What we need to know and who we need to listen to

[@jeanh7327]

Thank you for listening and lending us your voice - to be heard and shared!

[@LittleStepsBigGains]

Of course Jean! I only wish I could include more stories. I am hoping this can be a platform to share in the comments- a place to increase awareness so more voices can be heard

[@jenniferwaugh3558]

I have this from ms and this is the video I send to EVERYONE to explain it

[@LittleStepsBigGains]

I'm so happy to hear that this has been a helpful resource as I have learned so much from the community ❤️ Thanks for sharing ❤️

[@flybyadebiwood5789]

Me too

[@millymay0025]

This is one of if not the best video I’ve seen and heard about Ataxia, thank you!! So informative, relatable and accurate, this feels so validating as a patient. I describe it as trying to walk with your Center of gravity swinging around your body at different speeds, instead of consistently pulling you down to earth.

[@LittleStepsBigGains]

Thank you for that positive feedback and insight. Your experience is so valuable in both teaching individuals without ataxia and validating those with it ❤️

[@3dchanh]

Thank you for putting this together

[@LittleStepsBigGains]

After listening to such amazing people on the ataxia support groups, I'm pleased to share a even a few of their voices ❤️thank you for your support Chanh

[@Will-kr5kw]

Excellent explanation.....

[@LittleStepsBigGains]

Thank you for that feedback!

[@hohoga6095]

Thanks for sharing it is very helpful

[@LittleStepsBigGains]

You're more than welcome. Thank you for that feedback!

[@karlsands1714]

Thankyou so much for explaining ataxia in a easy to understand manner. I have recently had mri's on my upper and lower spine and also a brain mri brain scan. The spinal scans were all good but am now waiting for results of brain scan.

[@LittleStepsBigGains]

I'm glad this was helpful. Thank you for sharing that encouragement ❤️

[@ae31860]

Elizabeth, I was invited to present from the patient perspective for SCA. May I use part of this video as a teaching/presenter resource including quotes?

[@LittleStepsBigGains]

Absolutely! I appreciate your reaching out and hope this content will be helpful! Thank you for your willingness to share your perspective to others ❤️

[@Alihasanivip706]

Good awareness video Good luck Keep going like this often

[@LittleStepsBigGains]

Thank you! I appreciate that encouraging feedback!

[@garynantais2730]

THANK YOU ELIZABETH...YOU PROVIDED AN EXPLANATION FOR ME TO SHARE ON FB . IT CAN BE DIFFICULT TO EXPLAIN TO OTHERS WHAT I AM DEALING WITH. I GET FRUSTRATED SOMETIMES WITH FAMILY, WHO DON'T EVEN BOTHER TO TAKE THE TIME TO EDUCATE THEMSELVES

[@LittleStepsBigGains]

Hi Gary, I'm happy to have been able to provide a medium for you to share your feelings and experiences. Thank you for sharing that feedback. I truly hope this video helps

[@KingReetam]

Hi, I shared the link on my disability awareness page with a clip of the video. Hope you receive a million more views, Really described proficiently❤

[@LittleStepsBigGains]

Thank you for sharing! I truly hope this brings awareness

[@parnamukherjee2334]

Great job

[@Marcia_Toms]

Very helpful, thank you.

[@LittleStepsBigGains]

I'm glad to hear that. Thanks for that encouraging feedback

[@tamihunt3659]

I can relate to everything you said. Thank you for being there and your calming effect

[@LittleStepsBigGains]

Hi Tami, I am so pleased to hear that you found understanding here amongst others who have ataxia. There is great comfort in just knowing you're not alone ❤️ thanks for reaching out

[@JackieCanessa]

My husband has ataxia how can i find latest finds on this condition We live in Kissimmee, Fl. And there seems not to anybody familiar with Ataxia Any information you can share would be most appreciated Thank you. Jackie D

[@LittleStepsBigGains]

Hi Jackie! Have you looked at The National Ataxia Foundation website? There is a tab that connects you to a plethora of resources on current and upcoming research updates. Also, on KZbin, they have "meet the ataxia expert" where various experts ask questions about ataxia. I've learned a lot through there as well :) www.ataxia.org/

[@misunyi2329]

I am not sure if it was you or not.. you posted something saying that you were doing research for the result of eye movement exercise. Stretch your arm and stand up your thumb and focuse on it but move your head left and right. It improves your brain and balance. If it is you then can you send the link of KZbin to me?

[@noelmoore4474]

Thank you. This explains many of my son's symptoms.

[@LittleStepsBigGains]

I'm happy to hear that this helped you Noel. I appreciate the Ataxia community sharing their experiences with me ❤️

[@lysbethchamblee9042]

Thank you for providing us something to share to help explain our situation. Boy can I relate!

[@LittleStepsBigGains]

You are so welcome Lysbeth! I'm happy to provide a medium that you can relate to and share to others. The content expressed was from the community

[@petboos14]

Tack!

[@inthegulley]

Thank you]

[@LittleStepsBigGains]

You're welcome! Thanks for the encouragement ❤️

[@tamihunt3659]

Hi Elizabeth, am interested in your email that you sent this morning, I want to take part in the exercises, but when I click on instruction or feedback, says I cannot access OFFICE, not sure what to do.

[@LittleStepsBigGains]

Hi Tami! I so appreciate your willingness to help me explore these exercises-I just sent you an email now with some instructions :) Thanks for reaching out :)

[@benitaboerema6316]

thank you for sharing!

[@dibadesigns2895]

Thank you so much i could share that on many platforms well done 👌🏻

[@LittleStepsBigGains]

Thanks Diba- I am happy to hear that these words from the ataxia community can be shared with more people. Thank you for reaching out

[@Louie200Seven]

Thank you! What do you think of acupuncture and TCM?

[@LittleStepsBigGains]

Hi Lou! Thanks for reaching out. Unfortunately since I work within the rehab facilities and hospitals, I personally have little experience with acupuncture and TCM. However, here is a thread I found with some feedback from individuals in the ataxia community ❤️ healthunlocked.com/ataxia-uk/posts/132429905/acupuncture.

[@ayaasaf21]

Wow. During most of the video I felt like you translating my own thoughts and saying some of the things I have told before to others. Thx❤️ #cureFA

[@LittleStepsBigGains]

I'm glad to hear that I captured many of the relatable aspects of the condition for you. I'm grateful that the ataxia community has shared these with me to share with others

[@humakhattak1140]

My son has ataxia, he has nystagmus and difficulty with fine motor activities like writing. He is doing physiotherapies. God knows how much time will it take and weather its curable or not

[@destineymatthews6061]

Is it acquired or hereditary

[@humakhattak1140]

@@destineymatthews6061 we started to observe at the age of five six months, likely he have it by birth. Dr are using terms cerebellum autropy and optical autropy for his condition.

[@destineymatthews6061]

I have both nystagmus and Ataxia non hereditary for me

[@TheAissa2]

I have episodic Ataxia. Each day different. May not have an episode for a week or more, then gait, balance affected. I fall down, limbs stop working.

[@LittleStepsBigGains]

Hi Aissatou, thank you for sharing this and some awareness about episodic ataxia. Your personal experience is very enlightening. As usual, please correct me if I'm wrong, however, for those readers who have not been exposed to episodic ataxia, there are seven known types. Individuals experience recurrent attacks of impaired coordination and balance that can last anywhere between several seconds to hours. The frequency of attacks ranges from several per day to one or two per year. I personally was completely unaware of this condition prior to getting involved in the ataxia community. Thank you Aissatou for sharing your personal experience here. Your testimony helps shed light on this condition- and brings more awareness to us all.

[@faisaltasiu5421]

Hi there is a herbal cure for ataxia, I got cured using dr nafuar herbal medicine and now I’m feeling better thanks dr nafuar

[@shadulsayyed6908]

Super

[@LittleStepsBigGains]

Thank you!

[@abdulsalamshakeerat5101]

Am ataxia patient

[@destineymatthews6061]

Did you acquire it or born with it I have Ataxia and nystagmus both

[@janajones6711]

You are so awesome! Will you be at the conference in March?

[@LittleStepsBigGains]

Thank you Jana for that encouragement. I am hoping to attend as I enjoyed the last virtual conference, however as of now, I'm not certain yet.

[@bluecube7247]

I have ataxia with cognitive declines? Anyone else

[@LittleStepsBigGains]

You are most definitely not alone. The video highlights those without cognitive deficits because of how many people wrote to me about how others assume they have impairments purely from their slowed or slurred speech. However know you are not alone in having a cognitive decline too ❤️

[@ajaysivaramakrishnan7283]

{con soli da te }