1 year: The sun is shining and progress is measurable

Today it is one year since I got my stem cells back. It has been just wonderful to celebrate the holidays in may with my family instead of chemo and isolation. A month ago I became a grandmother – this is so wonderful, and just perfect timing. A year ago I was not allowed to be around children. Not being able to hold her would be terrible!

I am also very happy with my chemo curls. They are curling ut and around and it will take forever to get long hair this way, but I really love it!

These days, I am most happy for being a projct person, promoting objective, measurable criterias when evaluating progress. My subjective feeling of progress has not been very good, I just want to be in better shape than I actually am.

These last days have been tough – I was nervous facing kognitive and physical check up on the hospital, and I strongly felt that I had not been doing all I could to accomplish the results I wanted. I could have been training harder, and working more dedicated with my meditation and mental training. Finally, I just had to say to myself: “It is what it is”.

Neuropsycological testing

I went through the same kognitive testing as last year: Attention, memory, coordination, consentration, speed, fatigue and problem solving. Last year my competitive instinct took control, and I  gave everything I had, absolutely no strategic thinking here! I am glad now, because I know the improvements are real. Last year, I did some tests very well, and some others catastophic bad:

  • Memory tests: Very good, I think that was basically because I had been practising memory techniques due to speeches and lectures.
  • MS-related parametres: Extremely bad, to the extent that I actually was a bit insulted, but at the same time so bad it had to be relevant to the MS:

So what was the results now, one year after? On about halft the test, I did as well as last year, maybe insignificantly better. On memory it was a bit worse, but that don’t consern me since I have done no technique-training since last time. On the MS-related parametres, I did from 20% – 65% better than last time! It was so obvious, so fun and I am so happy! The conclusion is better attention span, simultaneous capacity and working capacity.

Physical testing

Then, I was ready for my physiotherapist, Maud. She has been following my blog, seen the TV-show, and had the notes and plan from last time.

The ordinary step-excersises, lunges and walking in square was approximately like last year – some marginally better, some marginally worse. Then I was ready for the walking test. The task is easy: Walk as far as possible in 6 minutes. It was easy in the beginning, I could easily control my right leg, balance and stability. After a while it was harder, and it never seemed to stop. The seconds that flew so fast at the cognitive speed-tests, was dragging here…. Eager and competitive the last seconds, I finished with my drop-foot almost sending me head first in the floor, savid it by an inch. And the results?

  • March 2012: 340 metres in 6 minutes
  • May 2013: 720 metres in 6 minutes

This is more than double the walking speed! And actually the same speed I ran 400 metres last year, 7,2 km/h. I am so happy! THis shows that you can’t rely on your own subjective feelings of progress, but need the “hard facts”.

I have had to fight quite hard with the hospital for them to accept me and my evaluation project. Now I am very grateful that they accepted to do this, because it gives the result valuable credibility. Hopeful that credibility will be useful both for other MS’ers and also doctors who will be interested in this treatment.

New MRI-pictures

Last week I took new MRI’s of head, neck and spine. With the lap top on the kitchen table, and the old and new CD, it was not easy to interprete the images…. I saw one plaque in the left hemisphere on both images, but also thought I saw two old ones that I couldn’t find on the new one. Not daring to be too optimistic about this, I will wait for my neurologists conclusion on monday. But I did compare the written conclusion from the diagnose-giving MRI’s from 2001 with the new conclusion:

  • 2001: “Cervical MRI – High-signal change cranialt in medulla, appearance well  consisten with MS-plaque.”
  • 2013: “MRI Cervical columna – No lesions in medulla,  MS-plaque not detected.”

 

I think this is good 🙂

 My 20 seconds with the secretary of health

Yesterday, I attended a health conference. Mostly because the secretary of health would be there. I realized that if I would be able to talk to him at all, that would be just for a few seconds. So I prepared a letter, telling about my treatment and results, and asking him to help speed up the process in Norway. I also prepared my “elevator speech”, and my “Hello, I am Elin Jakobsen, I am #2 in Norway to get rid of MS” got his attention. We had a nice and short talk, and I hope is was intrigued enough to read my letter – and maybe do something about it 🙂

  • I am back at work with no medicine
  • I paid NOK 400′ myself
  • I have already saved the norwegian government at least this amount in medical care already.

By now, we are 6 norwegian MS’ers who have performed HSCT at Karolinska, and now they have started treating MS’ers here in Norway. Based on empirical material from some pioneers who paid everything themselves, perhaps?  About time we get reimbursed.

 

Leave a Reply

Your email address will not be published. Required fields are marked *