Living with ataxia

Inspirational video with young people talking about their lives with ataxia. Produced by Ataxia UK and supported by the Roald Dahl's Marvellous Children's Charity.

[@Fairy_Covers]

I am 25 years old. I've had cerebellar ataxia, since I was in a bus accident, when I was 7. Sometimes, I feel like I don't have it, but I am reminded about it, every time I walk, talk, or move my left hand(the tremors are more noticeable in my left side). I work my hardest to keep a positive mind.

[@AtaxiaUKonline]

Hi Megane, thank you for sharing your story with us. I'm Steph, the Communications Officer at Ataxia UK. We have a warm and welcoming Facebook page for people who are affected by ataxia where they can discuss, share and support. If you haven't seen it already, I would recommend it! facebook.com/ataxiauk/ We also have a group designed for younger people who are affected by the condition called our 16-30's project. It has a mini website and a private Facebook group, too. If you would like any more information about how to join, do feel free to get in touch via [e-mail]. Best wishes, Steph

[@helenmiller6742]

keep going …………..43 yrs. for me

[@Kthutton1]

Does a weighted vest help?

[@assistinglovedones6631]

LOOKING FOR NEW MEMBER TO JOIN THIS SUPPORT GROUP FOR THOSE WHO SUFFER FROM ATAXIA!! YOU CAN MEET NEW PEOPLE AND SHARE YOUR EXPERIENCES AND LEARN FROM OTHERS. THIS IS A FRIENDLY AND RESPECTFUL ENVIRONMENT. facebook.com/groups/909840872844675/

[@zoyeb100]

i relate to what matt said ..... when i was diagnosed with ataxia with oculomotor apraxia 2 after a really long time of having symptoms it was kind of a relief knowing it was actually real and not just in my head

[@AtaxiaUKonline]

Thanks for sharing! We have private groups on Facebook you can join to speak to others in a similar situation to yourself. You can become a Friend of Ataxia UK for free here: www.ataxia.org.uk/forms/joinataxiauk

[@ashleystipes11]

Such beautiful inspiration 🤗🥰🤗

[@lanasalomekurasidze9314]

I'm addicted to healthy lifestyle,as well as staying positive! =)

[@inja9233]

Mein Sohn hatte auch, Louis-Bar-Syndrom. A T. Es wurde mit 7 Jahren in der Charité in Berlin festgestellt. Er wurde nur 20 Jahre alt.

[@dinakader6309]

all my love to all human with ataxia!

[@helenmiller6742]

thanks, I've had it 43yrs., it's not gonna have me

[@neuscatalan4197]

thank you , lovely human person

[@ved1384]

Good job 👏

[@mihollow]

my son has ataxia because of brain surgery... much love to all

[@savannahhollan6220]

Michelle Phillips me too!

[@assistinglovedones6631]

LOOKING FOR NEW MEMBER TO JOIN THIS SUPPORT GROUP FOR THOSE WHO SUFFER FROM ATAXIA!! YOU CAN MEET NEW PEOPLE AND SHARE YOUR EXPERIENCES AND LEARN FROM OTHERS. THIS IS A FRIENDLY AND RESPECTFUL ENVIRONMENT. facebook.com/groups/909840872844675/

[@irshadtt1047]

Doctor advised me to do the MRI scan for my son to make sure he has cerebellar ataxia.but unfortunately we can't do that we tried it 4times but failed now he started again to walk and now he is back to normal. He can walk climb run and all he done before. He was admitted when we noticed he is falling down when he is trying to walk. For Allah's sake doctor said he is recovered from it without any treatment. Moreover we didn't done the MRI till now

[@assistinglovedones6631]

LOOKING FOR NEW MEMBER TO JOIN THIS SUPPORT GROUP FOR THOSE WHO SUFFER FROM ATAXIA!! YOU CAN MEET NEW PEOPLE AND SHARE YOUR EXPERIENCES AND LEARN FROM OTHERS. THIS IS A FRIENDLY AND RESPECTFUL ENVIRONMENT. facebook.com/groups/909840872844675/

[@JohnHaigh09]

I know something is not right with me, when I run or walk far the next day it seems like there isn’t any improvement and I remember in the past walking or using my legs would make me stronger, this doesn’t happen now. Also when I’m walking on the pavement sometimes I’ll just walk like I’m drunk for no reason! Some days are worse than others. Sometimes I feel like I'm going to fall into someone walking past me which adds to the stress of walking. My mother noticed I sometimes have slurred speech as if I’m drunk and I have to promise her I haven’t been drinking! Hand-writing is now a struggle for me, when I could used to write pages with no problem, now it’s a challenge and I feel my writing is slower and has regressed. I have all these symptoms and I don’t know what to do!

[@cynthiamontgomery6972]

I have spinocerebellerataxia and wish that there could be a campaign or march to find a cure for this disease.

[@davidmcvicker9669]

How are you doing now ? I have it too.

[@assistinglovedones6631]

LOOKING FOR NEW MEMBER TO JOIN THIS SUPPORT GROUP FOR THOSE WHO SUFFER FROM ATAXIA!! YOU CAN MEET NEW PEOPLE AND SHARE YOUR EXPERIENCES AND LEARN FROM OTHERS. THIS IS A FRIENDLY AND RESPECTFUL ENVIRONMENT. facebook.com/groups/909840872844675/

[@Rajveergillcom]

Is there any test to diagnose earlier whether u have ataxia in nearby future or not?

[@myrtlewebber1620]

Hi, I was diagnosed nearly 3 years ago and I have been unable to work and do many things I used to because my balance has been greatly affected. I've had several times with physical therapy and my balance is a little better while I am in therapy but after I no longer get therapy I have the same physical challenges. I have remained as independent as possible and would love to find an exercise that strenghtens my leg muscles.

[@assistinglovedones6631]

LOOKING FOR NEW MEMBER TO JOIN THIS SUPPORT GROUP FOR THOSE WHO SUFFER FROM ATAXIA!! YOU CAN MEET NEW PEOPLE AND SHARE YOUR EXPERIENCES AND LEARN FROM OTHERS. THIS IS A FRIENDLY AND RESPECTFUL ENVIRONMENT. facebook.com/groups/909840872844675/

[@shawnmcanthony5724]

Do squats with weights at the gym it strenthens leg muscles

[@junmarkreynob9444]

Our baby at 2 years old is diagnosed of Cerebellar Ataxia. We found it very difficult to do the therapy considering his age. He used to be a very happy and energetic kid. Hope you can help us in his condition. A little advise and prayers will do.

[@boredcarmen8291]

my prayers are with you

[@georgekafantaris7807]

im 52 with ms..i cant walk good either..

[@susanfinlay2233]

Hi i was diagnosed with ataxia 2 years ago My balance is still ok for now Still driving working 3 days a week Roomservice Promanade hotel perth wa I have nystagmus one vertical one horizontal Last week i had a turn dizzy spell Almost passed out Ended up vomiting and diarrhea I have had a few of these over the years Dose anyone else?

[@assistinglovedones6631]

LOOKING FOR NEW MEMBER TO JOIN THIS SUPPORT GROUP FOR THOSE WHO SUFFER FROM ATAXIA!! YOU CAN MEET NEW PEOPLE AND SHARE YOUR EXPERIENCES AND LEARN FROM OTHERS. THIS IS A FRIENDLY AND RESPECTFUL ENVIRONMENT. facebook.com/groups/909840872844675/

[@muhammadbilal1467]

in which age your ataxia symptoms start.

[@kelviannaepperson3677]

I have cerebral palsy. I wss recently diagnosed with ataxia. Growing up speaking was hard in public and still is but I didn't know that my speech was impaired and my hearing is selective

[@nankosundaylar7923]

There is a cure for ataxia, I'm a living testimony to prove it. I was cured by Dr nafuar herbal cure

[@muhammadbilal1467]

@@markmartin2413 please tell me the names of herbal medicines which you used.thanks

[@kombuchalover2]

My mother and grandmother have ataxia where it limits there leg movements so they must use walkers and wheel chairs to move around. I have a 50% change of inheriting the condition. I am only 12 and live with a lot of stress

[@alz123alz]

Don't worry, just maintain a good exercise regimentation. We will have a cure by the time you are a grandma or mother

[@assistinglovedones6631]

LOOKING FOR NEW MEMBER TO JOIN THIS SUPPORT GROUP FOR THOSE WHO SUFFER FROM ATAXIA!! YOU CAN MEET NEW PEOPLE AND SHARE YOUR EXPERIENCES AND LEARN FROM OTHERS. THIS IS A FRIENDLY AND RESPECTFUL ENVIRONMENT. facebook.com/groups/909840872844675/

[@d2factz197]

Same here bro. My father have ataxia. I'm 15 and I am also in a stress

[@victorwalcott9523]

By strong

[@victorwalcott9523]

Be×

[@nileshkharote6789]

My child have ataxia talengectacia , Have any treatment ,pls anybody suggest

[@AtaxiaUKonline]

Hi Nilesh, Please have a look at our website for more info www.ataxia.org.uk/. Thank you!

[@rjnairrjnair]

My sister also have , very disappointed about this disease ,no idea how to revive her..

[@AtaxiaUKonline]

Hi rjnair498, we're sorry to hear your sister is having a difficult time. Can I ask if she's in touch with Ataxia UK directly? We have many kinds of support groups for people with ataxia of any age, as well as the most up-to-date research in what care/exercises can assist with living with ataxia. Do get in touch with us if you'd like to talk further, as well as for yourself, if you would also like support - ataxia affects family members, too. You can reach us on: [e-mail] . Many thanks, Stephanie Marley Communications Manager Ataxia UK

[@rjnairrjnair]

@@AtaxiaUKonline hearty thanks for your reply , and I will contact this support group .

[@semangatsembiring9853]

Hi...my name Semangat Sembiring. Male, now i am 50 years old. I got ataxia 10 years ago and years after years geting worse. Now i must sit on the whellchair. I have 2 children. I am worry if one of them get ataxia same like me. Can some body help me to get information to cure ataxia. Thx

[@malufuentes6858]

Quisiera solicitar si pueden escribir en español, yo soy atáxica vivo en Chile, aquí no hay redes de apoyo para nosotros

[@abrahamromero5228]

+Malú Fuentes Hola Malú yo soy Mexicano. My familia padeaw de esta enfermedad. La hermana del abuelo materno, mi madre, el hermano de mi madre, mis tias dos de ellas, mi hermano mayor, mi hermana mayor y yo ya empeaw a tener los sintomas. mi hermana y una de mia tias toman terapi de ocupuntura, y mi hermano ejercios de coordinacion.

[@claudiadinatale3566]

hola mi esposo sufre de ataxia y vivimos en argentina ahora con la nueva ley de aceite de cannabis queremos ver si pueden tener una mejor calidda de vida!! tu lo has tomado?te lo han dado ?

[@alz123alz]

BEST THING FOR ATAXIA IS EXERCISE, EXERCISE, EXCERCISE . CHECK WITH DOCTOR

[@assistinglovedones6631]

LOOKING FOR NEW MEMBER TO JOIN THIS SUPPORT GROUP FOR THOSE WHO SUFFER FROM ATAXIA!! YOU CAN MEET NEW PEOPLE AND SHARE YOUR EXPERIENCES AND LEARN FROM OTHERS. THIS IS A FRIENDLY AND RESPECTFUL ENVIRONMENT. facebook.com/groups/909840872844675/

[@nawillanawilla5413]

Eny one know some thing about ATAXIA TYPE(AVED)?????

[@amineaittaleb3075]

I have a loved one who has had this disease for a few years, what information do you need?

[@otvest]

A weighted vest with the weight in the RIGHT place can help stabilize the trunk and improve motor function in the upper extremities. We have videos from person's with ataxia who contacted US, wanting to tell us how much the OTvest, weighted vest helped decrease lateral sway and make them more confident in walking. Please visit otvest.com/cerebellar-ataxia/

[@johnfulsaas4038]

It's no fun. I just live with it hoping it will go away

[@ismaelforcadabagant4595]

DO YOU KNOW GLUTEN ATAXIA?

[@azharabbasazharabbas1444]

Sir i am patient and i am live in Pakistan City Taxila Rawalpindi so sir please help me in Ataxia

[@romancmelo4543]

Hi, my name is Roman. I am 26 years old from Slovakia and 9 years ago I was diagnosed with a rare hereditary "episodic ataxia type 2". Who has this type of ataxia? Nice to meet you 🙂

[@jaredleto3650]

Earlier this year I was diagnosed with ataxia in 2020 and I have tried everything I could to heal myself, but it was all to no avail, until I saw a post on a health forum about an herbalist preparing herbal medicines to cure everything type of diseases, at first I doubted it was real, but decided to give it a try, when I contacted this herbalist through his email and he prepared me a herbal cure for ataxia and sent it to me via the delivery service of UPS from the company, when I received this herbal cure. , gave me step by step instructions on how to apply it, when I applied it according to the instructions I was totally cured of this deadly disease within 5 months of use, I am now free, all thanks to Dr. Ocheja. You can also contact this great herbalist for help by email: [e-mail] or contact Dr. through his whats-app: [phone] They also specialize in the treatment of all kinds of diseases, VIRUS HERPES , HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES AND MORE.

[@muhammadbilal1467]

what about your balance and walk dear friend?

[@miguelchacon6224]

hello Roman. I'm 37 years old and i've had ataxia since 12 years old.

[@harshaljoshi4864]

Anyone suffer from memory issues in ataxia?

[@scottsmall1407]

I do

[@miguelchacon6224]

if it comes with seizures

[@harshaljoshi4864]

Yeah, i have acquired ataxia from head injury when i was 7 & half after 1 & half years later i has brain surgery. Now i am 34 years old

[@miguelchacon6224]

@@harshaljoshi4864 don't worry bro. i suffer from seizures also. no retardation. ataxia is a condition, NOT A DISEASE. I'M NOW 38 YEARS OLD.

[@chivosadventures8171]

if you have Ataxia don't expect for them to find a cure anytime soon, and also expect for your condition to gradually get worse. 😢😭

[@helenmiller6742]

the body is broken, but thank God my mind is ok, 42yrs. now

[@alz123alz]

EXERCISEE, EXERCISSE, EXCERCIS, IT STIMULATES THE CEREBELLUM

[@trooperchick3610]

I love disable people

[@trooperchick3610]

they are cute :) Think positive mate :)