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Archive for the ‘Good ideas’ Category

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 ❤

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I love narrow hallways and tiny bathrooms. Open areas are very scary cause there is nothing to hold on to. The walls are my friends! Anyone else who love walls? 🙂

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Last year I got four of these poles. They are placed around the house in areas where there is nothing to hold on to. It is a great help in “taking back” areas of my house. Yeah yeah, I know what they look like… Use them as you wish 🙂

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I just added a few changes to my blog. I’ve added a translation option as you can see on top of the right column of my page. This translates my page in google translator. Google translator doesn’t give the perfect translation but it is the best automatic option there is I think.

So far I’ve added portuguese, spanish and turkish. What other langues should I add? You can also change the language yourself once you have just clicked on one of the language options. On top of the translated page there is a box where you can switch to your preferred language.

The second change is that I’ve added “Imukin” under the Categories menu also on the right column. Hopefully that makes it easier for you to read all I know about Imukin. Unfortunately it seems like when you are on a translated version of my blog and then click on a cathegory it switches right back to english. Don’t know if that can be fixed or not yet.

Hope you like the changes 🙂

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What have you been thinking about lately? I have been thinking about the hip flexors… Get a life, right?! I haven’t given them enough attention lately. When the automatic control over the movements is lacking we have to do it all ourselves. If you read my earlier post “Choreography” you got a glimpse of what a few seconds of movement takes of planning and awareness. If you are a person with no problem walking you should pat yourself on your shoulder and say “Good job body! You are doing an amazing job!” Walking is extremely complex and complicated. I really should have appreciated it more when I could.

So, my hip flexors… If I didn’t know better I probably would have excused them by thinking they are getting paralyzed, cause when I´m walking they just wont do what they are supposed to; lift my knees. Instead it seems like the body compensate by using other muscles and I end up wagging like a goose.

extremeliving.no friedreichs ataxia exercises

I know these muscles works just fine for example when I swim or do mat exercises lying on my back. Strength is also good. It seems like they just get too stunned when they have to talk part in walking. Walking is too much coordination at once. It´s not really the muscle itself that is the problem but the nerves between the muscle and my brain. Bad communication problems…  About a week ago I started paying extra attention to these muscles and already I can see a difference.

How? I would say that the main thing is awareness; just remember to use them. For example I love to sneak exercising into my activities of daily living, ADL. That way you get exercising “for free”. You have to get dressed anyways so why not turn it into an exercise for your hip flexors? I made a post about ADL exercising earlier. Read it HERE. I also posted some exercises for the hip flexors HERE.

Please share your own exercises for the hip flexors in the comments below. We all have different levels of function. It would be interesting for us all to see different perspectives on the same obstacle.

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So why is this post called “Battle against nature” when it’s all about the hip flexors? Well, I often find myself deep in thought over solving the problems that my illness causes to my body. I was in one of these moments  when it struck me that it all feels like a battle of war. I am sitting here wondering about my hip flexors and I realise that I am invaded by the strongest enemy of all; nature! Nature is targeting my body determinedly to ruin it and it is such a powerful enemy! Against one tiny soldier… So when you see the picture above of me pulling on my Ugg’s it is really soldier you see… HOOYAH!!

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Evil monster: FA

Hunter: G

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This is NOT a person. FA (fred) is an evil monster. A terrorist that shouldn’t exist and we will wipe it out, right!!

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Angry and ready for destruction!

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Steady arms helps with the aim.

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My handsome “kill FA-crew”.

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Great motivation makes it easier to hit the target…

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The hunter and it’s prey… 🙂

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Seventeen year Old Dagny Sofie (Fie) is on a one months adventure in the Philippines. For the occasion she started a blog to share her experiences.  She is treated like royalty over there which is well deserved. 🙂 This Norwegian beauty also has FA(friedreich’s ataxia).

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If you can’t read norwegian you should still check out this blog. The pictures also tells great stories. 🙂

Here’s the link: Fie på Fillipinene

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When you’re angry (for example at the floor…) it might help to take the tractor out for some field work… 🙂

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IMG_6831A very nice field… Right?

 

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