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Thank you for all the replies you have sent me so far. It is quite interesting to read, right? I hope we will keep getting many more replies. Comment below or send me an email: fafysio@extremeliving.no

Thank you so much dear translators for helping me spreading the word; Ahmet Sami Konca, Marisa Condurso de Nohara, Marilou Mertens, Dorival Ruiz, Amalia Maranhao and Michela Mogavero.

Also a big thank you to the amazing Gian Piero Sommaruga for coordinating translations and always for your great support and patience.

If you are not following the Babel Family group on Facebook than you really must go there and like the page https://www.facebook.com/groups/52801039038/

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Today I took another SARA score at my doctors and it is very exciting. In this score the best result is 0 – zero.

31.08 – scored 9,75 (right before my first injection)

26.10 – scored 7,2

25.01 – scored 5,1

Today I was able to take some steps  in tandem walk and stand for longer in tandem stance. It didn’t look pretty, that’s for sure, but I did it. Imukin and Thiamine seems to be a good match ❤

Many people are very curious about Thiamine. If you have tried it, do you mind leaving me a comment below? Your experience is important because it can help others. Thank you 🙂

Here is more about my own experience, dosages, link to reasearch and so on.

It’s been to long since I posted a picture of my cat, I know. Her she is 🙂

fafysio-extremeliving

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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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Many people contact me lately checking to see if I’am alive. Yes I am! 🙂

I’ve been taking Imukin for over three years now. I still feel great. The improvements I experienced during the first year has been stable.

So to another possible treatment for FA: thiamine or vitamin B1. This study was published earlier this year:

https://www.ncbi.nlm.nih.gov/pubmed/27488863 by Roberto Fancellu et al with really promising results.

Similar to Imukin this medicine is already out there so I asked my doctor If I could try it. It is a vitamin so it is very different from Imukin and there is rarely any side effects. My doctor did some research himself and then he said yes. So at the end of August I had my first injection of Tiacur. (Vitamin B1/Thiamine).

My doctor took a SARA test before the first injection. It was 9,75

I used to have muscle cramps in both my legs many times every night. They are gone! Or almost. I have on or two cramps per week in one leg at the time. Much better than cramping in both legs 4-6 times every night! I am also more coordinated and have more control at the exercises I do at the gym. Just ask my physio 🙂

After two months my doctor took another SARA and the score was 7,2.

With SARA 0 (zero) is the best score and 40 is bad.

He noticed that all coordinated movements was improved as well as my speech. Fantastic right?! Balance and standing exercises has not improved at this moment.

thiamineThe injections are intra muscular so they are a little bit unpleasant. I have my mother or Morten doing the injection.

The injection site is in the glutes or in the deltoid so it is a bit tricky to do it myself. The dosage is 100 mg two times per week. I feel no side effects or reactions.

I really hope these improvements will last, and perhaps there will be more improvements.  The study from Italy showed lasting effects after three years. Fingers crossed!

Thiamine is not as expensive as Imukin. The price per bottle is 423 NOK and I take two bottles each week. (Well, still expencive).

This is the medicine I take:

Idebenone: 1500 mg each day
Imukin: 250 micrograms three times per week
Thiamine: 100 mg two times per week

That means five needles per week. Is it worth it? YES.

Are any others taking Thaimaine? How do you feel?

 

 

 

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Do you like what you’re reading? I love it!

Thanks to the research team at Akershus University Hospital in Oslo with clever doctor Wyller in charge and not least, thanks to amazing Emilie, the scientific article about Imukin and cardiomyopathy is now published. This is a case study so the research is done one person, but pretty promising right?

You can download the article here: Wyller et al_Imukine for cardiomyopathy in FRDA_Int J Cardiol 2016

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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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I am sure you remember the blog post I wrote about Emilie in Cardiomyopathy and Imukin – promising news!

Today is the release of her first single Unbreakable! I downloaded it on iTunes this morning and I’ve kept listening to it over and over. Living with friedreich’s ataxia is extreme… That is why I called my blog Extreme Living. I cannot imagine how it is like growing up with this monster, as FA really is… It takes a lot of strength that is for sure. You can really feel the strength behind this song!

emilie mimmi austad andersen unbreakable imukin

Emilie is now on 150 micrograms of Imukin. She feels stronger and she has started to excercise. She has always been very strong but now she is doing pull-ups! Early this summer she was at a concert and she tells me that for the last hour she was standing the whole time singing and dancing!

As you remember from my last post, Emilie has quite severe cardiomyopathy. Today she tells me that the heart markers keeps improving! How is that for amazing news!! ❤ ❤ ❤

She can still be nauseous and have a headache as a reaction to the drug, but she is not as tired as she felt in the beginning of the treatment

You should really download her single!  It is available all around the world on iTunes and Spotify. You’ll find it here:

iTunes:https://itunes.apple.com/no/album/unbreakable-single/id1027446403

Spotify: https://open.spotify.com/album/1rX98uly17AK2ej9YiEjYB

Emilie is one of the two vocals you can hear, she wrote the lyrics and has pretty much had the creative control over the entire production.

Emilie, you inspire me! Thank you for making this song and for sharing your story with us! ❤

Unbreakable

By Emilie Mimmi Austad Andersen

 

When it comes down to it

I must admit

I’ve been through a lot

But I never gave up

They tried to knock me down

But I am stronger than they’ve ever known 

 

Now I don’t care at all

Now I’m picking up the pieces

And I’m moving on

I’ve cried so many tears

But I’m over it

I’m unbreakable x2

Yeah, I’m unbreakable

 

They enjoyed the view of me laying down

Breaking into pieces

Screaming for help

My scars and bruises have healed

I’m getting up

With a smile on my face and it won’t fade

 

Now I don’t care at all

Now I’m picking up the pieces

And I’m moving on

I’ve cried so many tears

But I’m over it

I’m unbreakable x2

Yeah, I’m unbreakable

 

Never ever happen again x2

 

Cuz I made it through

And I’m standing here

With my head up high

 

But now I am raising 

You are falling

Cuz I made it through

And I’m standing here

With my head up high

 

I’ve cried so many tears

But I’m over it

 

I’m unbreakable x2

Yeah, I’m unbreakable x2

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Rowing

Hi everybody,

Sorry for being such a rubbish blogger lately. I just wanted to let you know that I am all good. Imukin is working excellent (my initial improvements have remained stable for over a year now), my blood tests are normal and there is no sign of side effects. Can you believe it has been almost two years since I took my first Imukin injection?!

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Pictures from today 🙂

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Just as we started rowing the rain came… It´s still gorgous!

Hope you are having a great summer! 🙂 Follow me on instagram if you´d like; gdog78x

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This morning I woke up to an incredible message of hope! Not a bad way to start a new day?! On my phone there was a message from a happy mother sharing some good news about her daughter Emilie. Emilie is a great inspiration to me in so many ways. She is a musician and is releasing her first single later this summer. We are so excited about this. It is called “Unbreakable” and I’ve been lucky enough to listen to some of it already. It is so good!! 🙂 She is 18 years old and has FA.

emilie11225820_10153174725787211_1540288372_nBeauty, musician and warrior ❤

Emilie is suffering from severe cardiomyopathy and has been for many years. She has been in and out of hospitals. You can imagine that her doctors had many dilemmas when she last year asked about trying Imukin… No one else with FA and cardiomyopathy is taking Imukin, as far as I know. Her cardiologist made thorough research. After many discussions they decided that Emilie would start injections of Imukin. She started last October and the first dose was 10 mcg and injected at the hospital to be able to monitor her for 24 hours. It all went well. Unfortunately she’s had a bit of a hard time adjusting to the medication and she has been having more side effects than noticable effects for a long time. Side effects has been fatigue, muscle aches, nausea, headaches, depression and sleepiness. Hard to stay motivated feeling like this, but she kept going.

Now look at what her mother wrote me:

Emilie was just on her 6 month follow up with her cardiologist and we have some good feedback.

Emilie has been on the verge of giving up on the Imukin injections altogether, but since about one week ago something changed. The experienced side effects faded and the effects started showing. She has grown a lot stronger (and she was already very strong), she finds it easier to stand up, her movements are more controlled and generally everything seems a lot better.

Her heart markers are a lot better. One of them, pBNP, is now completely normal and Troponin T is almost normal. Both of these markers used to be “sky high” on Emilie. They have analyzed her ultrasound images from before starting Imukin with the images taken after 3 months and now after 6 months. The experts are convinced that her heart function has improved, both the systolic function and the diastolic function. In addition they notice that the walls of her heart have slowly grown thinner.
Emilie is about to increase her dosage to 150 mcg now so it will be very exciting to see if the positive trend continues. We are also very excited to see if her scoliosis has improved. She is going to a back clinic at the beginning of June.

Everything is very promising and more people could possibly also benefit from Imukin, maybe even those with cardiomyopathy.

Great news or what? 🙂

If you have any questions please write them below in the comments field. Emilie will help me with the replies 🙂 wmiliw11215906_10153174725867211_445602961_n

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