Feeds:
Posts
Comments

Archive for the ‘Problem solving’ Category

Oooh, dramatic subject!? 😉

Loosing my independence was the worst part of getting FA. I know many of you feel the same. You never really know how important independence is until you start loosing it. Right?

We were in Bejing, China, in 2010. I was only using walking sticks for support. We were at The Winter Palace and the Tinanmen Square (“Gate of Heavenly Peace”). Just getting to the entrance was really hard work. I ended up being so exhausted that I only made it just inside and then had to go back to the hotel… What a waste!!

(more…)

Read Full Post »

العربية (arabic)

Português

Türk

Français

I just entered into a new decade in life, and that has made me reflect on the decades that passed and the decades I have in front of me.

The thirties were a rollercoaster. Getting married at 31 and being diagnosed with friedreich’s ataxia two months later… I could write a book about my thirties. All the ups and downs and the lessons I’ve learned.

But I’m so over my thirties now and so ready for my forties. And you know what? I’ve started making plans for my 50th birthday in 10 years! I’m very excited about it cause I expect that we have many treatments for FA by then. I WILL dance and I WILL wear heels that day. (Are you with me Ilva? <3)

(more…)

Read Full Post »

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?

 

 

 

Read Full Post »

Did you know that Imukin has to be stored in the fridge? The same thing goes for insulin so there are good solutions out there to keep medicine cold on for example long flights. The cold packs from FRIO are genius and very easy to get ready for the trip. (FRIO home page)

In one box of Imukin there are six glasses. It is tempting to take the glasses out of their package to make room for more medicine within one cold pack. The thing is that you need the original package with the pharmacy label on it in case some airport security start checking things out. The label from the pharmacy has both your name and your doctor’s name on it. I also bring a written statement from my doctor in my travelling documents just to be sure.

Had a quick trip to Oslo this weekend for work and to go to the hairdresser. The state of my hair has been terrible lately so I was prepared to cut it all off. Instead I ended up with glam hair! So happy with my new-found hairdresser at Perfect Hair Frogner.

IMG_2528

 

Read Full Post »

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? 🙂

IMG_2005

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 🙂

Read Full Post »

This is something I know you really want to see! Ilva was so sweet to let me show you her walking videos both prior to Imukin and how she waks now, after 6 months. She started taking Imukin in February this year. She currently takes 200 mcg three times a week. Just before christmas last year she did a scoliosis surgery. She has recovered quite good don’t you think?

 February:

Now:

Last week she started walking with crutches. I have seen a video and it looked really good.

Big thanks to Ilva and Therese for letting me post your amazing videos! 🙂

Read Full Post »

I am aware of the responsibility I have writing about Imukin in my blog. It is very expensive, it is not available in all countries, it is so early in the research process, we don’t know if there will be any long term side effects… and so on. But I feel really strong about sharing things that gives hope. Hope is so valuable cause I know how it is to feel hopeless.

So Ilva, Therese and I  decided we want to show you Ilvas feet…

 

In December she had pes cavus and hammer toe on each foot.

This picture is from 2010. So you can add hammer toes to the picture to make it resembling how her feet looked in December 2013.

pes cavus snu

In January she started on Imukin. This is her feet yesterday!

etter pes cavus 1 etter pes cavus 2

Where did the pes cavus and hammer toes go?

 

Is this normal progression in FA? Did anyone else experience that pes cavus and hammer toes just disappear? Or is it Imukin?? Worth mentioning is that Ilva had flexion contractures in her fingers prior to Imukin. She can now fully extend her fingers. Unfortunately we don’t have pictures to show you of the hands. As Therese said: “We didn’t expect these things to improve so we didn’t think to take a before – picture.” 🙂

Read Full Post »

Lately I have started to use two walking sticks more and more. I’m afraid my walking is getting worse which I guess is inevitable having a progressive condition, but I have  also discovered many excellent benefits.

walking friedreichs ataxia

If I place the sticks far out from my body it gives me a wider support area and it’s easier to keep my balance.

It’s easier to maintain rotation in my trunk and it’s easier to keep the lower back in the right place as I walk.

It’s easier to walk more “normal”. I know that many ataxians says that you shouldn’t try to walk normal but I disagree to a certain degree. When I don’t concentrate on the walking I easily get pain in my legs, knees and my back. Pain makes everything much worse. It’s impossible to walk with full concentration all the time, but I try to do it as often as I can.

It gives me more freedom cause I don’t need someone to support me all the time.

stokk2walking sticks friedreichs ataxia

Read Full Post »

When you’re angry (for example at the floor…) it might help to take the tractor out for some field work… 🙂

IMG_6829

IMG_6828IMG_6827

IMG_6831A very nice field… Right?

 

Read Full Post »

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

Read Full Post »

Older Posts »