Feeds:
Posts
Comments

Posts Tagged ‘freidreichs ataxia’

This is the best novel you can find out there. This is why:

100 % of the income is being devoted to gene therapy research for Friedreich’s ataxia! The specific research project is aiming to find the best way to deliver the frataxin gene to the brain.

This book is the perfect gift to a friend, to a sister, to a father, to a neighbour, to a co-worker, to yourself, to everybody… You’ll need at least 10 copies.

If you don’t speak English or Spanish don’t worry. The book is beautiful. It will look so nice on your coffee table. Trust me, you’ll need it just for decoration ❤

Buy the english pocket book HERE

Buy the spanish pocket book HERE

Buy the english kindle version HERE

Buy the spanish kindle version HERE

“Marie Schlau is a young girl whose mind is filled with dreams and plans for the future. She’s just like other girls, but for one small detail: she suffers from Friedreich’s ataxia, a highly debilitating neurogenerative disease which limits her movements” This is how the book is introduced, and I promise you a powerful story.

The pseudonym A.F. BABEL represents the 17 authors of this collective novel: María Blasco (Spain), Jamie Leigh Hansen (USA), Diego Plaza (Spain), Eva Plaza (Spain), Rebecca Stant (Australia), Pilar A. Tolosana (Spain), Marguerite Black (South Africa), M. Luz G. Casas (Spain), María Pino Brumberg (Spain), Ramón Roldán (Spain), Nicola Batty (UK), Susan A. Carter (USA), Fátima D´Oliveira (Portugal), Kristina Zarrantz (Spain), Inma Priego (Spain), Sarah Allen (UK), Claudia Parada (Mexico). 13 of the 17 authors suffer from FA. Is cleverness a common side effect from FA? Seems to be 😛

Thank you all for creating this amazing book. Thank you to all the talented writers, translators, BabelFamily and Asogaf. We love you ❤

Advertisements

Read Full Post »

Lately I have started to use two walking sticks more and more. I’m afraid my walking is getting worse which I guess is inevitable having a progressive condition, but I have  also discovered many excellent benefits.

walking friedreichs ataxia

If I place the sticks far out from my body it gives me a wider support area and it’s easier to keep my balance.

It’s easier to maintain rotation in my trunk and it’s easier to keep the lower back in the right place as I walk.

It’s easier to walk more “normal”. I know that many ataxians says that you shouldn’t try to walk normal but I disagree to a certain degree. When I don’t concentrate on the walking I easily get pain in my legs, knees and my back. Pain makes everything much worse. It’s impossible to walk with full concentration all the time, but I try to do it as often as I can.

It gives me more freedom cause I don’t need someone to support me all the time.

stokk2walking sticks friedreichs ataxia

Read Full Post »