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Posts Tagged ‘friedreich s ataxia’

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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I know this weekend has been filled with disappointment and sadness in many homes all around the world. The news that Horizon ended their study on interferon gamma struck the FA-family hard last Thursday. The research on using interferon gamma as a treatment for FA “did not meet its primary endpoint of a statistically significant change from baseline in the modified Friedreich’s Ataxia Rating Scale (FARS‐mNeuro) at 26 weeks versus treatment with placebo.”

I cried. Not because it changes anything for me. I have the medication I need to keep going. My heart broke thinking about all the children and people with FA that never will be able to test if IFG will improve their life or not.

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The mothers of Ilva and Emilie just told me some amazing news. I will just post their comments here and let them speak for themselves.

This is from Therese, mother of Ilva (15). Started on Imukin February 2014:

“We were at the yearly check up at the hospital in Kristiansand today. The neurological examination shows no progression of the disease since one year ago!!! The neurologist meant it was an effect of the interferon gamma treatment! It was just lovely to see that Ilva were able to perform these tests so well. Also it was very exciting for her to have a confirmation that all the injections are worth it.”

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The 27th of August 2013 i took my very first injection of Imukin.  The next day after lunch I had two meetings in the city. Normally that meant I would be exhausted the rest of the day and maybe the next day after. In the elevator after our first meeting Morten looked at me and said; “Your speech is better!”. At the end of the day we were amazed about how I managed the two meetings with lots of talking, standing and walking without being exhausted. We talked about; This must be what placebo is like!

If this was placebo I really loved placebo! 🙂

Two years later the improvements still lasts and placebo can not take the glory for my improvements anymore!

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This is about time! Since you haven’t heard from me for a long while you must be wondering what’s going on, especially with my very own Imukin testing?

I am still on 200 micrograms three days a week. In the middle of February we decided to reduce the dose to 100 mcg for a while. I wanted to see for myself if 200 mcg was really necessary to keep up my improvements. If I could stay on 100 mcg I would save a lot of money, so I wanted to try it. The reaction came very soon and I started to feel worse just after a few days. After four weeks I gave up. At that time I had no energy, mood was very flat, I lost tonus in my muscle, got slurred speech again, lost coordination and balance, had bad standing stability and breathing felt more exhausting. My FA started to feel like it did in August 2013. I started taking Imukin 27th of August 2013, so at that time I was at my worst ever.

Conclusion was; I need to get back up on 200 mcg again so I can get my life back! So I did and of course I expected to feel better immediately, just like I did after I took my first shot in 2013. That didn’t happen… That was very scary! Did I ruin everything by reducing the dose in the first place? Had my tolerance to Imukin gotten so high that it wouldn’t give me a good effect anymore? Oh, the thoughts I had there for a while…

After about three weeks on 200 mcg I started to notice the positive changes. First came energy and mood, then stability, muscle tone, coordination and then finally speech. How happy I was when my speech got better again! Having slurred speech makes your personality trapped somehow. Hard to explain but those of you that have dysarthria know what I mean…

My walking is still not a pretty sight and I am very far from being cured. The thing is that I feel so much better with the slight improvement of every symptom that I now have quality of life. That is so important!

I have no frataxin results for you yet. It takes time, I know…

I’m about to apply for government funding for Imukin. Very curious about how they will respond to my application. One would expect that a medication that can keep a young person (yes, you heard me J) at work + increases the quality of life by 100%, would automatically be refunded regardless of scientific evidence?

My experience with Imukin is so positive that I will keep taking it for as long as it gives me effect and I will keep paying for it myself if I have to.

At this moment we are three people in Norway taking Imukin for FA. It is a 14 year old girl, my sister (33) and me. The two others also feel improvements… exciting right.

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From last week. Todays it’s snowing!

 

bildeIt’s all good 🙂

 

 

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Have you paid attention to your toes lately?

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It is really important that we stretch our toes and ankles regularly. We are all so different in our problems and symptoms but I presume that it is important for most ataxians. Since I have much spasticity in my legs my toes often curl up to become some kind of claws. I wrote about that in my earlier post HERE. If I don’t stretch my ankles and toes often I wake up with cramps in my feet many times every night. What I fear as a long term consequence is that my tendons and ligaments in my feet will shorten and contract permanently making it hard to stand, walk and to wear normal shoes. I will try to fight that off for as long as I can.

I do these stretches in the evening while I watch tv:

Toes: Knee should be flexed. The ankle should be pulled up (dorsal flexion) as far as possible. Hold that position with one hand while you with the other hand extend your toes as far back as possible. Hold these two positions at the same time and you should feel the stretch under your foot along the arch and under  your toes. You might be able to hold these two positions with one hand too but make sure you can feel the stretch.

I stretch my big toe separately from the smaller four to make sure they all get a good stretch.

Ankle: Your knee should be extended and at the same time you pull your foot back towards you as far as possible.

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The principles I try to follow:

  • hold the stretch for at least 20 seconds.
  • do the same stretch three times in a row

I know that for many of us it might be hard to reach down to the feet and to do this kind of stretch. You should get someone to help you. There are many muscles around your ankles and toes that can cause trouble so you should ask your physiotherapist to give you the right stretches for your own feet.

Good luck! 🙂

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I know I should have updated you for a long time now. The thing is that with more energy there is also much work to be done. I rarely have “sofa-time” anymore like I had a lot of before IFG. So my absence from my blog is a good sign; I’m feeling good! J

Just a quick update for you.

I’ve increased the dose from 100 mcg to 200 mcg and have been taking 200 for about a month now. I take the shot subcutaneously three times per week.

Side effects:

I have less side effects now than I did the first few weeks on 100 mcg. I guess my body adjusted just fine to IFG. What I can experience from time to time now is a light fever and some dry coughing. The fever is rare and often during short periods.  I take a low dose of paracetamol to manage these symptoms if it bothers me. The last two weeks I have started to wake up in the middle of the night being wide awake. I don’t know if it is due to the IFG yet but it might. I don’t have pain or anything, I´m just awake.

I have taking blood samples to monitor the liver, kidney and blood values. So far everything looks excellent.

Effects:

Much more energy! To me it is such a huge difference. For example, before IFG when I visited our clinic, I often have to lie down after half an hour because I was so exhausted. I remember our secretary tucking me in under blankets, getting me water and turn off the lights in the room so that I could relax. I would be so tired when I came home from there that I would tell Morten I couldn’t say another word today cause I was so tired. Well, now I can work in the clinics reception for the whole day! There is so many people walking in and out all day and the phone rings constantly. I can not believe that I actually can do that job again?! It has been a couple of years since the last time I could do that, and it is amazing that I can be a more active part of our business again.

Speech is better, as you can tell from my example above. I have better stability when standing. The mood is better. This is very strange. It changed immediately. I remember thinking to myself when I actually felt in a good mood; “Aren´t you supposed to be depressed?!” It’s weird how a grey cloud is lifted off my shoulders.

There are many more things I can say about improvements but the greatest changes are those above. I will write more about everything else when I have more time.

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I don´t have good illustrations for this blog post, so I give you… my cat! ::P

What haven´t changed:

The high puls is still there. I take the same dose with beta blockers as before. Im still not moving as a ballerina… Ataxia is still there when I walk, though increased energy and stability makes it easier. I might have a little more spasticity in my legs, but I prefer increased tonus than decreased tonus.

Testing:

The frataxing measuring is delayed. This test has never been done in Norway before so the lab is taking it´s time to get the readings right. It might be ready some time during January. I did the FARS scale the 10th. Even though I walked faster, could keep my balance longer, did better on the speech test and suddenly have joint sensitivity, it doesn’t show on the scale. Are you familiar with FARS? It is quite a rough scale. I score a 1 in many of the tests. For example; I can get dressed on my own but I am slower and more clumsy than normal. That is 1 point. 0 is normal and 2 is that I need help. So even though I feel it is easier now it is a long way from being better to being all normal. So in most tests I got the same score as last time; I´m better but FA is still there, of course. The FARS is therefore not a good scale to measure my improvement. I had 49,5 the last time and now I improved by two points. The scale doesn’t have a question about energy or mood, which is quite strange when used for FA patients.

As I left the hospital I thought about how this score made me feel and the thing is, it doesn´t matter for me that the score wasn´t better. I feel so much better and as long as I do that I will keep taking IFG. If the effects stops or if I get bothersome side effects I will stop. As long as it improves my quality of life the money is even worth it. The other side of it all is that it might be easier to get the treatment funded and available for all FA patients if the results would be more measurable. The only thing that really matters is the quality of life, really. It should be the only argument needed. I wonder if my government thinks the same?? We´ll see. I’m impatient. I want you all to be able to test it NOW!

I will try to write more details later and answer questions if you have any. In the mean time I wish you all a really merry Christmas. I know this holiday can be tough for many of us so I really hope you all can find some happiness and joy.

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Cheers! From Miami October 2013.

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I just saw this fantastic facebook page yesterday. On this page you can se many people, and even animals, flexing their muscles. Men, women, old, young and even babies. This page is created by 15-year-old Jai from Australia who has friedreich’s ataxia and his family. They started this fundraising campaign to raise money for research and to create awareness for this horrible illness that has no treatment!

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Click on this picture to enter the facebook page.

This sunday Jai is going to swim the Cole Classic, Australia’s largest ocean swim. The Cole Classic is held at Manly Beach right outside Sidney. I have actually been in Manly once, in 2007. What a fantastic place to be! I wasn’t diagnosed back then and I just now remember that Morten and I studied my footprints in the sand as we had a walk on the gorgeous beach. Morten pointed down to my footprint and said: “Weird… You don’t lift your big toes properly as you step forward…!” At that time FA had started sneaking up on me and my footprints on Manly Beach showed us one of the first signs.

Jai has raised about $20 260 AUD until now. That equals kr.115 322,59 NOK and $21 058,10 USD. All this money goes to FA research! Great job! He challenges you to flex your muscles to show your support, to share his facebook page with others and to donate money if you have the opportunity to. FA is such a rare illness and the research is depending on donations to keep pushing forward to find a cure.

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What a great opportunity to flex some muscle and share it with the world… 😉

In Norway we don’t have the same tradition in running fundraisers. I wonder why not, since they are such great and meaningful events. The good news is that no matter where we live, it is easy to support the fundraisers all around the world. You can just click your way onto their web page and donate using your visa or mastercard! So easy!

Any amount is fantastic. 1 dollar – 10 – 20… If you would like to support our fight for finding a cure for FA, your support will be so very much appreciated! This is where you enter to donate: https://secure4.everydayhero.com.au/LendUsSomeMuscle/donate

They have made this amazing video to show what this campaign is all about. You should see it. The video is here: 

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