Hi i have ea for over twelve years &no meds seem to help with all the  symtoms.around twelve months ago i started to take chia seeds twice a day to get some relief from bladder pain&i have not had the more severe symtons of ea like the whole world spining,tremors,slurred speach,hot&cold sweaths,having to get down on the ground till the atack pases.whitch could take minutes or upto half hour,then needing to go to bed to recover properly..but i still have a lot of the mild…

hi all i have just received a rollator to help me around the place , managed to make myself ill with exhaustion while trying it out but seems to do the trick, i got it from the local hospital (physio department) and managed to get my self collared for weekley physio session ,question :- what is the general opinion on physiotherapy for balance , gait and general limb strengthening, the only benefit i find is me getting extremely tired afterwards will carry on because they seem so nice and…

Just lost my job today!,and feel really sad, that this disease has now robbed me of my career aswell as everything else. People give the usual response well you knew what would happen. Yes I did but it doesn't make it easy Ive not only lost my career of 25 years I've lost a part of me  another part. I hate this disease and wish it would go away it''s changing so quickly at work today I could'nt even get a coffee out of the machine someone did it for me which was very kind of them but after…

Hello everyone

This e-mail is by way of explanation for my absence. I have been 'off the radar' for several weeks due to hospitalization because of a broken hip sustained iin a fall.

Before we start I am not looking for sympathy only to explain why I have not answered any questions and why Christmas was seeminngly ignored.

Fixing the hip went well, the operation did not, suffice to say I ended up on life supprt. Still that is 'water under the bridge and thanks to…

Pasco: Disabled woman rescued service animal when roaming dogs attacked

http://www.tampabay.com/news/humaninterest/pasco-disabled-woman-rescued-service-animal-when-roaming-dogs-attacked/1212734

Five months ago, dancing seemed only a dream for five-year old Amelie Seedall. She is diagnosed with ataxia at an early age, a rare genetic condition which makes speech and motor skills difficult for her. Her balance is also affected by ataxia and she relies on a walker to move about. But today, Amelie is one jolly soul in the dancing hall of Dansworks Dance Academy in Bacup, Lancashire. Months of special training gradually brought out the dancer in little Amelie. Her mother noticed…

LivingWithAtaxia Members, Friends and Family,

As we begin a brand new year, envigorated with greater joy and compassion, we renewed our greater commitments to our community. BensFriends grew tremendously in the past three years, and we want to take this moment both to thank you and to make a promise to continue fulfill our mission: to ensure that everyone in the world with a rare disease has a safe place to go and connect with others like…

Hello ,



Can you add this upcoming charity ride to your event calendar?

Detailed information about the event is posted below and our logo

graphic is attached..



Event: Ride Ataxia

Date: March 24, 2012

Location: Denton, TX. UNT Apogee Stadium

Website:…

Sarah is setting a course for Canada.

Please follow the blog, and welcome her on her landing in Canada

http://www.sarahouten.com/on-the-edge-of-the-ocean/?utm_medium=twitter&utm_source=twitterfeed

The deadline to go to the NAF Confrance is Jan 26th. Please find a application for adult grants here:http://www.ataxia.org/pdf/2012_Travel_Grant_Adult.pdf

Hope to see you there! :-) Please say hello! :-)

I watched 60 mins on CBS (ch 5) on what we need to know about stem cells- cures. Also find it on 60 mins overtime.com

Or if you get this in time you can watch it tomorrow (Monday) 7am PST News!

http://www.ataxia-awareness.com/joannes-story.html

Ataxia (International) Survivors, Friends and Family,

We hope this message finds you well with high spirits and inner joy. We’re happy to inform you that our Ataxia (International) community continuously been growing. And as always, we’re here to give strength and support.

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IN THIS…

Shamrock Rovers Football Club is extending its support to the Friedreichs Ataxia Society in Ireland. The Football Club has teamed up with businesspersons and entrepreneurs to collaborate and discuss business ideas and civic programs in the country. The Shamrock Rovers Business Club of Ireland is a unique business network because of its civic roles and goals of becoming one of the leading business forums throughout Dublin.

Enda Stevens, the football club’s left back, has…

Today is Dec.11.  Maddi woke up this morning not able to make her arms do what she wanted them to do.  She is very emotional.  She CANNOT walk without stumbling, running into walls and falling down.  At 5 yrs old she is giving herself pep talks!

She is worse now than she was on Fri when she was diagnosed.

How do we find out exactly what type of ataxia this is?  Can we request tests to find out or do we just wait and see?

So frustrated for her!!! 

Ataxia is hard thing to live with but some people just do not see it as a barricade to do the things they like. In fact, some people perceive it as an inspiration to move on and enjoy life’s most exciting moments.  If every day is a challenge with Ataxia, but some just do not lose to it because it is not worth it. What is more worth it is making memorable and unforgettable experience that will leave footprints many would follow.  Just like Douglas Silas, a man who suffered from Cerebellar…

Please Share this Link, Thanks!

hi all , i haven't been on here for a while, i am hoping someone can give me advice on wheeled walking frames for outside use , i am still managing with my sticks and the walls inside my bungalow, but its a different story outside ,i am fighting againest a wheelchair not yet any way!!! i've an appointment at rookwood hospital (rehabilition) so will be asking these questions there ,so am trying to get as much info as possible take care all and be safe x

My name is Kristina. My daughter was diagnosed with SCA7. She had 220 CAG repeats. I just wanted to offer anyone my experience with this disease. I have learned alot and have passed it on to other parents. My daughter passed on November 1,2010 at the age of 2 1/2. If you have any questions, just let me know.

I'm a Norwgian pysiotherapist with Friedreichs ataxia and celiac disease. In my blog I write about how I live with ataxia. You'll find exercises I do, practical solutions to the everyday obstacles and some on what keeps me going. I made the blog to share my own experiences with others in the same situation and for the professionals to read. They need to know how it is to live with ataxia in order to give us the best treatment and follow up.  As a physiotherapist I know first hand that noone…