Archive for the ‘Good ideas’ Category

Oooh, dramatic subject!? 😉

Loosing my independence was the worst part of getting FA. I know many of you feel the same. You never really know how important independence is until you start loosing it. Right?

We were in Bejing, China, in 2010. I was only using walking sticks for support. We were at The Winter Palace and the Tinanmen Square (“Gate of Heavenly Peace”). Just getting to the entrance was really hard work. I ended up being so exhausted that I only made it just inside and then had to go back to the hotel… What a waste!!


Read Full Post »

العربية (arabic)




I just entered into a new decade in life, and that has made me reflect on the decades that passed and the decades I have in front of me.

The thirties were a rollercoaster. Getting married at 31 and being diagnosed with friedreich’s ataxia two months later… I could write a book about my thirties. All the ups and downs and the lessons I’ve learned.

But I’m so over my thirties now and so ready for my forties. And you know what? I’ve started making plans for my 50th birthday in 10 years! I’m very excited about it cause I expect that we have many treatments for FA by then. I WILL dance and I WILL wear heels that day. (Are you with me Ilva? <3)


Read Full Post »

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.


Read Full Post »

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? 🙂


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 🙂

Read Full Post »

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 🙂

Read Full Post »

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.

bilde 2

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!!

Read Full Post »

Evil monster: FA

Hunter: G


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


Angry and ready for destruction!


Steady arms helps with the aim.


My handsome “kill FA-crew”.


Great motivation makes it easier to hit the target…


The hunter and it’s prey… 🙂

Read Full Post »

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).

dagny sofie reiseblogg

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

Read Full Post »

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



IMG_6831A very nice field… Right?


Read Full Post »

Make sure your sister goes to the gym frequently. It can be convenient at shopping for example…shopping

Read Full Post »

Older Posts »