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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.

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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.

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

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I recently got a comment on my blog with many great questions. I think that what this person asked me we can all relate to; how to find motivation, confidence, courage… I decided to answer some of the comments as a blog post.

If any of you readers have more tips to these questions it would be great if you posted them as comments below. We would all love to hear your tips and solutions to these problems many of us have in common.

“I function, but it is really frustrating wathcing evry other people running stairs without a tought while I have to use the rails.”

Agreed! How crazy it is to watch people running down the stairs when we have to hold the rails tight not to fall on our heads?! Hard to believe I did that myself once.

“1st it takes alot of effort to move, and do daily activities like getting a cup of coffee, when moving with that cup I will spill alot to the floor so I will have to fill it about half or so.”

At home when I get coffee I carry the cup and the kettle separate. First I bring the cup, then I bring the kettle and fill up my cup. With cold drinks I use large glasses and don’t fill it up completely. At a café I ask someone to carry it for me. It is much better to ask for help than to struggle with this and to risk both spilling it all and to get burned, I think.

“But my biggest problem is confidence, I feel like people are watching me, some people even ask if im drunk, I hate going out.

Do you have some tips to get a little more confidence, what would you answere?”

You probably already have much more confidence than you think already. You are living, aren’t you? If someone had told me 10 years ago that I would get FA I wouldn’t have thought it would be possible to live. But still here I am. It seems like we are getting some extra confidence along the way.

People stare. If we see something out of the normal I think our brains automatically try to find an explanation to what we see. We want to understand. I just met this guy last week that probably had a burn injury to his face. His face looked all melted and blended and it was so hard not to stare. I can imagine he gets stared at all the time. He might think that people find him ugly and repelling. That was not what I thought about him. I was just wondering what happened to him. What I mean to say is that when you think people are looking at you they probably are, but a very few actually judge you. At least we cannot blame them cause we would probably stare at ourselves too if we were them. J

Some tips when you are out walking:

– Use a cane/ walking sticks. I started using my cane a lot sooner than others might have done for three reasons; 1. I wanted to be able to walk better. 2. When people see the cane they understand that something else is wrong, ergo I’m NOT drunk. 3. When people see the cane they let you have some more space. Walking in crowded places is so difficult. (I actually got my canes pimped! Read about that HERE.)

These days there are many more reasons for me to use one or two canes like for better balance, coordination, to prevent strain on my ankles, knees, back and much more.

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Full focus on the walking. It’s strange to have a cane as my main accessory ,but walking without it would look stranger. So I stick with my cane.

– If you don’t want to use a cane what about using a knee brace or something like that? People associate braces with sports injury and not that you are drunk.

– Listen to music as you walk. It helps you to shut out other people and you can easier focus on yourself. It can also be easier to move when you have a steady rhythm to follow.

– Make yourself a mantra. I think it is terribly hard to walk when I start focusing on that people are looking at me. My own head and thoughts are actually having a physical impact on my walking and I get all stiff. I try to override my mind by using my mantra: “You are so cool, you are so cool, you are the best, you are the king…” HAHA it sound so narcissistic! For me this actually helps. It helps me to focus on myself and the difficult task I’m up against… walking! You can make your own mantra of course, but feel free to use mine 😉

– Sometimes I don’t wear my contacts just because it helps to not see peoples faces too clearly when I need my concentration on my walking.

“are you working? I am afraid my carreer wont turn out like i want it to.”

Yes I am. I work from home. With Internet, e-mail and scanner/ printer at home there are many opportunities even when the body starts to fail. I have this chiropractor/ physiotherapy clinic that I started running together with my husband before I had FA. When I was diagnosed we started to adjust my work so that now I do all the administration of the clinic from home. Last year my sister and I (with good help from the rest of my family) started a web shop. All in all I work a lot! If I could ever advice ataxians in making career choices I would say get good at something you could do from home. Everything computer and Internet based gives you great opportunity to stay working for long.

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I går kom jeg tilfeldigvis over denne fantastiske facebooksiden. Her finner du et drøss med bilder av mennesker, store og små, som viser muskler. Bak denne siden finner vi 15 år gamle Jai som lider av sykdommen friedreich’s ataksi (samme som meg) og hans foreldre. De startet denne innsamlingskampanjen for å støtte forskningen på denne sykdommen samt for å spre budskapet til så mange der ute som mulig. Per dags dato finnes det ingen behandling for FA. Dette er en “liten” sykdom sammenlignet med mange “gigantiske” sykdommer som hjerte- og karsykdommer, kreft osv. En slik sykdom som FA blir dessverre ikke høyt prioritert når legemiddelfirmaene legger millionene på bordet for å investere i forskning.  Dette gjør oss helt avhengige av donasjoner for å finansiere denne forskningen.

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Førstkommende søndag (03.02) skal Jai svømme Cole Classic som en del av kampanjen. Dette er et stort svømmearrangement i Manly Beach, Australia. Jeg var faktisk på Manly, som ligger rett utenfor Sydney, i 2007. For en fantastisk plass! På dette tidspunktet hadde jeg ikke fått diagnosen enda. Jeg husker at Morten og jeg gikk tur på den vakre stranda. På returen ble vi obs på fotavtrykkene våre fra da vi gikk den andre veien. Mine fotavtrykk var merkelige. Morten sa: “Så rart. Det ser ikke ut som om du får med deg stortåa ordentlig når du går?!” Da hadde FA begynt å snike seg lydløst innpå meg. Noen av de første tydelige tegnene på sykdommen som var i vente satte sine spor i sanden på nettopp denne stranden i Australia.

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For en fantastisk mulighet til å få flekset litt muskler… 😉

Til nå har Jai og hans kampanje samlet inn 115 000 kr til forskningen på FA. For en fantastisk innsats! Det er rart at ikke slike innsamlingsaksjoner er mer vanlig i Norge. Det er underlig med tanke på hvor meningsfylt slike arrangementer er. Det er heldigvis enkelt for oss nordmenn å støtte kampanjen til Jai. Du klikker deg bare inn på donasjonssiden hans på internett, fyller inn kortdetaljer og dermed har du donert. Lett som en plett! Du velger selv hvor mye du vil gi. Alt teller! 10 kr – 50 kr – 100 kr… Ettersom Jai er fra Australia er  myntenheten inne på siden i AUD.

  • 1 AUD = 5,69 NOK
  • 10 AUD = 50,69 NOK
  • 50 AUD = 284,61 NOK
  • osv

Har du lyst har du lov 🙂

Her er linken til siden du kan donere penger på: https://secure4.everydayhero.com.au/LendUsSomeMuscle/donate

Deretter kan du ta et bilde av deg selv som viser muskler og laste det opp på facebooksiden hans. Dette gjør du bare hvis du har lyst. 🙂

De har også laget en kjempefin video som ligger ute på youtube. Den må dere se! Her er den:

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