Feeds:
Posts
Comments

Archive for the ‘Uncategorized’ Category

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

  • I feel stronger.
  • I can be active for longer.
  • I don’t have depression anymore.
  • I can navigate around obstacles with more ease.
  • I have less ataxia in my hands and arms.
  • I can hear my daughter singing in her room. She haven’t done that in many years.
  • I don’t have rush incontinence anymore.
  • She can hold the glass and drink from it without support. She was to shaky before.
  • He has been able to maintain his employment where he has to walk a fair amount of the day.
  • He can now pick up a pencil from the table.
  • Heart markers have improved significally. They used to be sky high, now, one is normal, the other one almost normal.
  • No more chestpain, nor hospitalization.
  • Almost no falls since I’ve started
  • Much more energy
  • I don’t have fatigue anymore.
  • I don’t have sleep apnea anymore
  • She went from constantly being too exhausted to go to school prior to Actimmune to missing almost no school after she was on this.
  • Her handwriting has improved a lot.
  • Less difficulty opening or closing with the key the door of our house.
  • She can now cut the cake and pour water into the glass with no difficulty.
  • Her icecold feet got warmer and normal color.
  • She was sceduled for an operation to lenghten the tendons under her feet to reduce the pes cavus, but after using Imukin for 7-8 months the spasticity almost ceased completely.
  • I haven’t had any reflux since I started the treatment.
  • Her hammertoes disappeared. Her toes and feet are now almost normal.
  • Heart hypertrophy without progress since she is on this treatment.
  • Scoliosis has improvement in curve.
  • My breathing got much better. Before the treatment it was really heavy. Like I had to make every breath manually.
  • My grasping and sensibility are increased.
  • My swallow and eating also improved.
  • It is easier to button my shirt. I am still clumsy but it goes easier and faster.
  • Touching her feet before triggered an overreaction and spasticity. To cut her nails was a disaster. The overreaction almost disappeared. You can touch the feet and cut the nails very much easier.
Advertisements

Read Full Post »

My heart!!

I’ve had an inverted T-curve on my EKG since my first check up in 2010. That is abnormal and many patients with FA has it.

My last check up was in August 2013. This was about one month before I took my first Imukin injection. At this check up my T-curve pointed the wrong way as It did the time before and the time before.

Today I saw the cardiologist again, and guess what?! My T-curve is absolutely normal! How amazing is that?

Read Full Post »

Walking the babies

20140906-163815-59895699.jpg

20140906-163815-59895334.jpg

Read Full Post »

Anyone else?

I´m very curious if anyone else around the world have started taking Imukin. I hope you let me know and maybe write me a comment below?

I’m still on 200 micrograms dosage 3 times a week. I still feel good and there has been no changes in side effects. I guess many of you are wondering about this. 🙂

If you want to hear Prof. Testi talking about his research you should listen to this audio stream from the Sixth Annual Friedreich’s Ataxia Symposium in Philadelphia last October. Testi is speaker no three. Here is the link: Sixth Annual Friedreich’s Ataxia Symposium – 2013

This has been a lovely day. Want to see?

IMG_4898Finally some snow again

IMG_4913My favorite hat – homemade by my mom 🙂

IMG_4901The famous “Nakken” (The neck mountain 🙂 )

IMG_4911Some men take their dogs out walking, other men walk their wives… My heart! ❤

Read Full Post »

It has been months since my last blog post. So much has been going on and I have been waiting a while to tell you some very interesting news. Since last summer I’ve been in touch with Prof. Roberto Testi who is chair of Immunology
Department of Biomedicine and Prevention Rare Disease Section 
School of Medicine
 University of Rome “Tor Vergata”.

I saw his article “Interferon gamma upregulates frataxin and corrects the functional deficits in a Friedreich ataxia model” and contacted him right away to get more additional info. Every research that shows an increase in frataxin protein levels is veeeeery interesting to me, and there is so much high tech research going on at the moment. What caught my immediate interest with this particular research is that interferon gamma is already an approved medication. The indication for using this medication is something completely different than friedreich’s ataxia, but it is there! It has already been tested for safety and side effects on humans.

I’m not a very patient person. As soon as I read this article I decided that if there is any way that I can try this treatment today, I would do just that. A year passed… I’ve had discussions with doctors, family and friends about risks, side effects, cost… In May this year Morten and I flew to Rome for a meeting with Testi at his research lab. We had a very good and informative meeting with the professor and met some of his co-workers. Back in Norway the discussions continued and finally we made the decision; Let the treatment begin!

bilde 1Big hope in a tiny bottle… 

Before I started I had a FARS scale done and blood samples taken to measure my levels of frataxin. This was done by my neurologists. One of my doctors prescribed the medication (called Imukin here in Norway) and my mother who is a nurse taught us how to do the injections subcutaneously. The dosage is 100 micrograms three times per week.

I took the first shot 27th of August. I had some flulike symptoms after one hour with some chills and almost feverish feeling in my head. I also had some muscle aches. The side effects were so insignificant that I fell asleep and woke up the next morning feeling just fine. The side effects after the injections then became weaker after a week or two and now there are almost no reaction at all.

I felt better already the first day. Family and friends told me they could hear that I spoke better.  Then I started realizing that I had more stability when I was standing and walking. I could brush my teeth standing up without supporting myself on the sink or I could make dinner standing up without needing a chair to sit on. Then came the energy. That is the most remarkable difference. I used to feel so tired all day every day. Now I have energy! It’s like I finally figured out how to change my empty batteries. Other things that feels better; walking up and down the stairs, swimming, breathing (!) and turning around in bed.

bilde 3Both my sisters are witnessing the first injection live via skype! 

Ok, it could all have been placebo. My mind is quite motivated for me to get better. The first few weeks I didn’t dare to talk so much to others about how I felt. Six weeks later I’m beginning to let myself believe it is more than placebo. Don’t get me wrong, I really love placebo and find it very fascinating, but we would all love it so much if there were anything out there that could put on the breaks on the monster, friedreich’s ataxia, long term.

Since the beginning I’ve felt gradually better. I felt a bit up and down for the first few weeks but then I’ve just felt better. So what is it by Imukin that makes me feel better? Is it the increase in frataxin protein or is it the direct effect that interferon gamma has on the neurons? Will I continue getting better, will I get back to “normal” again after a while, are there any risks I can get serious side effects later, how large dose should I take and for how long…?  Is the Imukin actually fixing something or just putting on the brakes for a while? Is it all in my head?There are so many unanswered questions at the moment. No one knows, yet. Testi and his lab of researchers in Rome is doing research on this as we speak and also there is one trial coming up in the US on interferon gamma.

I’ve had one drawback so far. Last Friday I had a two hours thai massage…  I thought that sounded lovely. Apparently that was too much for the system to handle. Within one hour after the massage I fell all the way back to the time before I started on Imukin. At least it felt that way; I had slurred speech like a drunk, had so much ataxia that Morten needed to support me when I walked even indoors and I felt totally out of energy. I was heartbroken. Is this how it really should be like? Was everything ruined just now? It took me three days to get better and yesterday I was all good again. What a relief!!

Feeling better raises so many new thoughts in my head. You know, I’ve realized by now that I wont get better, but only worse. The Gunnhild that I had a year  ago is gone and will never come back. Then I start getting better and I get a taste of hope and dreams again. Amazing and so incredibly scary at the same time! Interferon gamma as a treatment for FA can be many years ahead of us still. The research is following a strict protocol to get the medication approved for the treatment of FA patients. When (if) that day comes in Norway it means we will not have to pay for it ourselves. By now I pay for everything myself.

bilde 4The nurse is ready, the sisters are ready and I am ready…let’s go!

In December will have another FARS scale done by my neurologists and also a new blood sample to measure frataxin. This is so exciting! I guess it dosn’t matter so much to the doctors I say that I feel better. They like much more to use objective measurements. Fingers crossed everybody! If they can’t measure any changes by then and if the research done in Italy and USA doesn’t lead anywhere I still have learned a lot from this experience.

Meanwhile waiting for the cure to come there should be put some effort in finding some treatment that aims to increase the energy levels in FA patients. Everything gets easier to handle with some energy. Maybe it could be EPO, steroids, Imukin…. Just find us something!  (Certain sports communities knows all about this I guess…)

There are so many things to discuss about this subject. I have many thoughts and maybe others have questions? Have others tried interferon gamma and can share your own experiences with me? This blog post is already getting very long so let’s end this one here.

Finally, I just have to say how much I admire and love all of those who raise money and awareness for FA out there and all the incredible researchers who are using their brilliant minds and knowledge to find a treatment for FA. Without having met you, still you are some of the most important people in my life!! Thank you!

Read Full Post »

My office…

This has become my office more and more lately. I both love it and hate it. I love that I can still work on most bad days by working from my sofa, but I really hate bad days!! Roses makes everything so much better though. 🙂

20130424-173759.jpg

Read Full Post »

Favorite winter boots

My absolute favorites for snow and ice are these boots from Timberland. They provide great support around the ankles, are warm, has a great grip and there is plenty of room for warm socks. Love them!

20130202-123254.jpg

Read Full Post »

Older Posts »