Archive for the ‘My thoughts’ Category

Just me again… Ranting about Imukin as usual 😛

So a pandemic just happened and making research on FA move even slower than before. Our patience have been tested in many ways this year, but if you have FA you are in hurry for real. No lockdown, one meter rule, face mask or antibac can keep us safe from the progressive force of FA.

I’m lucky to have Imukin while all this is going on, (more…)

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If we dont have enough people with FA willing to participate in studies, research will make a stop and it will take –  f o r e v e r – to find a cure! Who with FA feels like they have time to wait any longer then absolutely necessary?

Do you want a cure for FA?

If your answer is «Yes!!!!»: You must register here and be willing to participate in research (more…)

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In late september there is an international ataxia conference in Pisa, Italy. This is hosted by Ataxia UK, GoFar and FARA. I have seen posts on Instagram and Facebook asking for feedback from patients on what abilities we have lost that we would like to get back. Are there any symptoms we have that the researchers don’t know about and so on.  Good. Future research must not miss out on improvements because they are not aware of a symptom.


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Below I have collected some of the feedback I’ve got from people taking interferon gamma (Actimmune/Imukin) These improvements  can not be measured with the FARS scale, from what I can recall. I wanted to post this to show why the FARS scale alone should not be the only measure to decide if a drug has effect for FA or not.

We can not afford that these effects are not taken into consideration! Please find a way to measure this.

(If you have any more affects like these, please please please write me a comment so I can update the list. If we want changes, we need to say something)


pes cavus snu

Before Imukin

etter pes cavus 1

After 7-8 months on Imukin


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This morning I read a really scary and exciting story. A true story!

It’s about the newborn baby Frataxin who is destined to play an important role in keeping the nerve system safe when they grow up. To become an adult they have to travel the dark and dangerous roads to the safe city of Mitochondria. The distant lights from Mitochondria draws them closer and closer on their way to become the true heroes they are meant to be. In the darkness the Inspectors of Death are luring. Their mission is to watch the baby Frataxins and to tag them with Ubiquitin dust, the Kiss of Death. The Frataxin babies unlucky to have been tagged is immediately attacked by the Death Squad and transported  to the Hall of Proteasome where they are melted in the great fire. They will never become the Protectors of the nerves as they were meant to.


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Quick update

Yes I am here and everything is good 🙂

It has been very long since my last blog post and the reason is:


I’ve had som surgery done to my face… No! Just kidding! Who else love snap?? 😀

The reason is WORK. This last year has been quite stressful and busy so I can’t seem to find the time to update my blog.

I am still taking 250 mcg of Imukin. I have taken this dosage for a year now. My blood tests are completely normal and I have no side effects. Despite the stressful times this past year I never seem to get exhausted like I used to before Imukin. I have been sitting and typing on my computer with not much exercise for a very long time and that makes me stiff and sore, and my walking is not great at the moment so;

My goal in the very near future is to work less, rest more and exercise. Anyone else? 😉


This is basically what I’ve been doing since my last update 🙂

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I have been taking my Imukin injections since August 2013. Many people want to know how my walking is now. Often the relatives are very focused on that. When I tell them my walking is not better, but I have great effect of the medication, I often feel their disappointment. If the walking isn’t any better there is no effect??


It is impossible to understand how horrible FA is if you are not experiencing it. Let me show you how I can claim with all my heart how much I have improved:



I used to be so exhausted all the time I had to lie on the couch most of the day. If I had a meeting planned one day I had to rest up before going and then I needed to schedule the rest of the day and maybe the next 1-2 days for resting. I would be so exhausted that first evening that I wouldn’t have energy to smile or talk. It was here that I developed my one-word sentences. Just one world would explain to Morten what I needed.


Now I talk so much that Morten sometimes reminds me “You should not use so many words. You have dysarthria remember!” LOL! I work full time. I come home from a meeting and I go straight to work. I hardly know where my couch is anymore!

old office

A picture of my old office… and my assistant 😀


You can tell from my example above that it has improved J It is easier to be spontaneous in a conversation. That is an enormous social benefit…



Disappeared after one week. Depression can often be symptom of FA, not just caused by the situation. Next to energy this effect is one of my favourite effects! Everything is easier to handle when you are happy!


Stability/ coordination

FA destroys the muscle coordination that gives all your joints stability and function to make you move and to fight the gravity. It used to be painful and difficult to stand. Gravity was too much to handle for my body and feet, ankles, knees and back would kind of collapse. I always sat on a chair while cooking. Now standing is not a problem. I never use a chair while cooking anymore. I have less back pain.



It didn’t have enough air. At least it felt like that. It felt like I had to think about how I was breathing to make it right and I was sighing all the time. My chest was not moving so I had to force the chest to be a part of the breathing. Now I don’t think about breathing anymore. That is how it should be, right?


Walking down the stairs

So much easier now since the muscles seems to be more flexible.


Increased sensibility

I used to step on my own toes 1-2 times per week. Really painful but I did not have sensibility in my toes so I thought they were stretched out when they weren’t. I haven’t stepped on my toes since august 2013.



I have not been falling once since august 2013.



I used to have a T-inversion on my EKG. After one year on Imukin my EKG was normal.


As you can see there are so many other things that go wrong with FA than just the walking. Until the cure gets here I am so happy that Imukin gives me quality of life by improving so many of my symptoms. It is not easy to live inside a body set for self-destruction… A relief of symptoms makes a great difference! If Imukin works in my body like it has been proved in the early lab studies, my nerves are protected from degeneration as we speak. How amazing is that?! So doctors… why wait?



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“Thinking Out Loud”

When your legs don’t work like they used to before
And I can’t sweep you off of your feet

I usually listen more to the melody than to the lyrics in a song. However when this song plays on the radio it has always felt like Ed Sheeran is talking to me, but I have never really listened to him. Today I listened to him and I am sure that Ed is actually talking to me. To us.

His song is about how he will still love his girl when they are old and their health is weak. Most people think that poor health will come eventually. When we are old.

Then life happens…

Your legs might stop working before you are 20, the hair might be gone before you are 40 and the memory might fade before you are 50…

Many people have to face these challenges to early in life. Yet the boyfriends, girlfriends, husbands and wives stay, love and support. You are true heroes! You all amaze me and you deserve all the cred in the world!

Let us dedicate this song to the amazing people who see us for who we really are ❤


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Today I had an experience that broke something within me and really opened my eyes. I am not going to name any names or point fingers cause people are just doing their jobs and have to make hard decisions. Since this meeting I’ve had so many thoughts in my head that I could have written 100 blog posts about it or perhaps a book?

I might tell this story later, but until I’m ready I just have to say this:

Today I felt mistrusted for being to happy and excited. Excited about how I have been able to adjust to the fact that I have a degenerative and life shortening disorder…

I have turned my life up side down, facilitated, rebuilt, mind gamed myself, created new opportunities, mind gamed myself some more and found new paths around barriers. I have kissed my old life goodbye with great great sorrow and adjusted to my new life. I have done my very best to survive and I am very proud of it. Problem is that the “system” do not recognize how a happy face can be seriously ill and in need of help…

So you smile = you don’t need help? Is this really how it works?

A friend of mine posted this quote on her facebook page a few years ago and I have thought of it all day. It really says it all. Strength does not mean that there isn’t weakness beneath. It is a good survival skill and it takes a lot of work.

To all out there struggling with illnesses, physical or mental, I applaud your strength! I really hope you are ok and that you get the help and support that you need and deserve ❤



Ps: This has nothing to do with Imukin, just for the record 🙂

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noun: frustration
  1. the feeling of being upset or annoyed, especially because of inability to change or achieve something.


When I hear doctors (and parents) refusing Imukin treatment to people with FA who wants to see if it can help it makes me laugh AND cry! It is both hilarious and devastating. Imukin (interferon gamma/ actimmune) might not help everybody, it won’t cure us but many people who have tried it experienced relief of symptoms. There are no words in the world that can justify what kind of relief that is!

How can the risk of flu-like symptoms be a reason not to try Imukin when FA is as terrible as it is? I know many decition makers are scared that there are more serious side effects to Imukin. There might be but it is not common. What kind of medicine does not have serious side effects listed in their description?

The most common side effects to Imukin are flu-like symptoms. What is that:


  • fever
  • headache
  • chills
  • myalgia

I would take flu-like symptoms every day for the rest of my life as long as my FA symptoms gets better. That said, I hardly feel any flu-like symptoms from taking Imukin anymore. The body adjusts.

This is why I think doctors should let FA patients try Imukin:

Friedreich’s ataxia (FA) is a debilitating, life-shortening, degenerative neuro-muscular disorder.

  • loss of coordination (ataxia) in the arms and legs
  • fatigue – energy deprivation and muscle loss
  • vision impairment, hearing loss, and slurred speech
  • aggressive scoliosis (curvature of the spine)
  • diabetes mellitus (insulin – dependent, in most cases)
  • a serious heart condition (enlarged heart – hypertrophic cardiomyopathy)

Again, I am not saying that Imukin is a cure but it might make symptoms improve. Please do something! Something is better than nothing!

Just sayin…


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