Happy new year!

Just wanted to give you a quick update. I am 3 1/2 year Post HSCT.

Status of all the good things:

  • I am working full time, doing courses, seminars and lecturing.
  • I walk without aid, have never used anything (exept holding hands with my man)
  • I can babysit my granddaughter over nigth – and her parents are happy to ask me!
  • I drive, no problem with either hectic city or long distances
  • I can walk the stairs without holding the rail (well, I need to concentrate, and usually I use the support. Sometimes without truble, when tired: Dragging myself up)
  • I started with a gym-membership recently, and do ordinary strength-training like I did before. (Just a bit more careful, and there is no doubt for people around that I have a walking-issue.) Hopefully, this will reduce or stop the detoriating of muscles and stability.

So, is it better than before? No, I have definetively experienced a reduction of mobility and stability. Compared to Pre-HSCT, I do not go skiing, I have not dared biking for more than a year, I have reduced balance and walking capability. The best walking is straight forward with no obstacles. Please do not ask me to turn around, look somewhere, or change direction rapidly 🙂  Yesterday I almost fractured my little toe on the living room carpet…….

I am adjusting to the “new” life of limitations, and embracing all the possibilities I still have.There is no regrets about doing HSCT, but still: I was hoping for better results.

I used to say “Don’t do this before you really have to!”. Now, I am more like “Do it as soon as possible!”. This change is because of:

  • There are more facilities offering non-myo, and this treatment is getting better every year. I did Myo BEAM, that was really tough, both treatment and side-effects. A milder but still effective HSCT opens for earlier intervention
  • It seems like peple doing this early are getting very good results.

I wish you the best new year, and the best of luck to all of you doing HSCT in the future!

 

35 months: My days are about family, job and yoga

Today is one month before my 3 year anniversary. This year has been all about finding new routines. Accepting that my body is weaker than in was before, that my balance is worse, and that I have to be consistent about training on my present level.  My ne routine is yoga each morning and evening, stretching each day in addition to this. I wish I could say that I am as consistent in my strength and cardio training, but well… not quite 🙂 But I do interval-training in stairs: Going up 8 floors, taking the elevator down, and repeating up to 4 in total! Excellent way to get hifh pulse while holding tight on both handles! Thanks to this I actually did catch a train one day, despite being a bit too late 🙂

I am still doing full-day seminars in Project Management, it is fantastic to be able to do the job I love. My walking is not as smooth as it was two years ago, so I usually give a short explanation. Ensuring that it is just water in my glass, makes everything more relaxed.  This spring I have updated with certification exams, getting even more exciting curriculum to teach 🙂

I am enclosing a short video showing me and our granddaughter in our garden, in the last snow before easter:

I snøen

PS: My 3 year MRI had no changes compared to last year, so there has been no new lesions since 2011!

Two years. Already?

Yesterday I celebrated my 2 year post HSCT-anniversary. Well, it was the birthday party for a friend, but anyway. I was walking on high heels, my walking was no issue, and I am back to being myself again.

London 2 år

We have been to London, and my stamina for walking and shopping was remarkable better than in Paris in 2012.

People are asking me: Does it work? And the answer is YES!

Still, I would have hoped for even better results.

  • I was hoping to get back to Taekwon-Do training, and pursue the 3rd degree examination. That is not realistic, due to my balance issues.
  • I was hoping to be able to walk more, further, faster and more stable.
  • I was hoping to run 400m on track faster than in 2012. I don’t even dare trying. For now, at least. It might be just my stamina and strength, after 2 years without training. I don’t know. I have just been so sad because I couldn’t manage the TKD, and have not been able to find another training i like and manage.

This video was recorded today (wonderful spring/summer in Norway now!). My walking is smoother and better than before HSCT, even though it sometimes is worse (especially when I am tired), but sometimes it is even better than this:

2 år gange

I am so happy about everything I am able to do.

I can work. Long days, consentrating, on stage, high heels. Big audiences. Certification exams, business administration, expanding my business, daring to plan ahead. It is so much fun! And I no longer have to talk about HSCT at work, because there is nothing to explain 🙂

And today, I managed to bike with “professional bike-shoes”, those you click to the pedal. I only did it with my right foot, and then I did no longer have to worry about it slipping off the pedal. It was wonderful! Now I just want to practice a lot, so that I can use it on both feet ( a bit scary still, being tied up wit both feet).

This week I will take my last vaccination, against chicken pox. This is solely based on the advice from the HSCT-forum, and the fact that my wonderful granddaughter is starting kindergarden this autumn. I really want to be a cool grandmother, but no so cool that we get chickenpox together.

On friday, I am taking my 2 year MRI, it would be nice if they show the improvements I feel.

And my new year resolutions? Well, getting the flu in mach was a bump in the road. But I am back on track for the biggest part of it: Doing yoga every day, meditation almost every day. Much better eating, and still ambitious!

 

20 months: Good effect of my “no-sugar”-regime

My new year resolution startet dec 26th, and now I feel confident that I will manage to keep them, after nearly a month 🙂

I had four “new actions” I wanted to implement:

  1. Absolutely no sugar or any chocolate
  2. Yoga every morning
  3. Meditation each day
  4. Excercise and stretching eah day

So, what are the results so far?

I have been totally off sugar, except for two occasions: I ate some christmas cookies when cleaning out christmas, and I drank a glass of fanta two days later. And the effect? I almost immidiately experienced spasms and cramps in my right leg. That has been a real problem for me the last months, but except for theese episodes, nothing for two weeks 🙂 So the saying is true: “There is no such thing as failure, just useful information and feedback”

I struggled with the yoga in the morning, until I made my own routine  – a soft, calm yoga inspired by medical yoga. And then I do som real efficient yoga routine 2-3 evenings a week. Ha one late, late night yoga, wonderful – quiet and more fleksible than ever. Wonderful 🙂

I was not consistent with the meditation the first week, but then I found a description of ifferent meditations. So now I vary between these forms:

  • Laying flat on the bathroom floor, just breathing deep and scanning my body for positive sensations.
  • Listening to guided meditations
  • Sitting, breathing and visualizing
  • And several times a day, I do gratitude and “the inner smile”, just a few seconds to feel happy

SnøfreserExcercising and stretching has been  – well, I am not consistently doing it every day. But the last week we have had more snow than ever, and I have been shovelling for hours each day. Qualify as excercise, I regard. Luckily, I like it 🙂

I am stronger, more resilient and with more endurance when I do this quite hard work, and I have definitively improved since pre-HSCT.

After just a few weeks withour sugar, I am sure my body and healing process benefit from this change.

19 months: It is all up to me now

The possible remitting effect after HSCT is supposed to kick in between 12-18 months post transplant. So now, it is all up to me to be better. I have had measurable effect, now it is mostly just my argumentative right leg that is  – litterally – dragging behing.

Balance and excercise

I have been a bit worried that my balance has become slightly worse than before. Then, at our Christmas-party, I was discussing this with both my daughters in law. They are both black-belts, and due to pregnance and university studies, none of them has been practising taekwon-do the last year. And they both have noticed worse balance! So maybe not every problem is a MS-problem 🙂 I had 13 years of martial art-practicing before Karolinska, and now I have 2 years of…nothing…..

Big variations

I am experiencing greater variance between better and worse now, than I did pre-HSCT. In the morning, I can feel stiff, spastic and walking with terrible balance, but when I get out of the hose – to work, travel, fix things – I walk on high heels straight and confident, giving speeches, lecturing for 8 hours in a row, better than I have been for several years. When I left for Karolinska, I was problably  EDSS 3.0 – 3.5, now I feel the interval is between 2.0 to almost 4.0. I am fully ambulatory all the time, but must admit that sometimes i love the “romantic walker!” aka holding hands 🙂

Interesting MS-seminar

A month ago, I attended a seminar about MS-research. Most of the recognized norwegian neurologist and researcher were present, and after talking to many of them in the breaks, I am happy to notice that they know more about HSCT and seem more positive now than 2 years ago. I also talked to one of them, who is claiming that HSCT is just another DMD, and that I must expect to get my MS back later.  I strongly disagree, and cant find any empirical infomation supporting his argument.

Later that day, I was happy to listen to JoKim Burmann from Uppsala in Sweden, who has treated bround 20 MS’ers with HSCT. They opened for questions from the audience, so I presented myself, told them that I did HSCT 18 months ago, and that I refer to myself as “having had MS”. I told him about my disagreement with the neurologist claiming HSCT to be DMD, and asked him: Do you think it is just slowing down the disease? His answer was loud and clear; “No!”. I was so happy about that answer in front of that specific audience 🙂

 

16 months: Slow but steady ahead

This summer has been good. Now, I feel that I am mostly back on the level of improvement that I experienced the first 6 months after HSCT. My impression is that many of us have some quite definitive improvments the first months, but then they might be stopping or reversing. Sometimes I compare with last autumn: I was still weak, but so optimistic, planning for the same rate of improvements further on. Then months of doubt. But well, I am feally feeling better now. Mo walking is smoother, I have more capacity for doing normal stuff, doing training, pushing myself.

Yoga LofotenI started medical yoga late this summer, and finally got into the routine of starting every morning with basic yoga. I have had this as an ambition ever since I was in isolation at the hospital, with CVK 24/7 😉 I have had this self-image as myself as a persistent and determined person, but my yoga and training has been less than impressive. With my muscles tightening up, and my balance below par, I just got no sense of achievement. But starting really soft with medical yoga, I got the routine going, and after six weeks I now get the flow-feeling again 🙂 I am back at the flexibility-level I was before HSCT, and my balance is almost as good. I can almost touch ground with straight legs (starting on touching knees…) I can stand on one leg in the three-position for 10-15 second, even on my right leg.

I hear that many other HSCT’ers are following quite rigid programs with physiotherapy and PT, and hitting the wall at full speed. Be careful, listen to your body, do breathing excercises and lower your stress-level.

Patience is the magic word, as George (my eternal guru) always say.

A couple of weeks ago, I had my regular check at my optician, for new contact lenses. The viskon test has always been a struggle, but this time i could answer fast and steady. He was suprprised at my general improvement, and described my eyesight as “normal”, after beeing on a slow hill against problems to maintain my drivers licence. Ok, I still have all the age-related problems, needing progressive glass and so on, but normal sight! That is wonderful. But still my eyes worry me a bit, there are still strange things going on there from time to time. But maybe, it is just my body working on the remisson 🙂 Always hoping!

13 months: Pimp my cabbage-juice

This is still a rollercoaster. I get some indications that chemo is not ideal for our system… I seem to have got my ulcer back, the point in my oesophagus that was difficult in Sweden is making trouble again. So I have three options:

  1. kåljuiceWait for a public gastoscopy
  2. Pay approx $450 for a private gastroscopy (in both cases it would be just to confirm that “yes, chemo is tough”, and for free medicine. Cost/benefit evaluation….
  3. Pay the Omeprazol myself, and drinking cabbage juice and potato-water

This is supposed to help the mucous membrane heal, and it seems to help – together with banana and oat-meal-porridge. No coffe, no spice. Active stress-reduction excercises. Hoping for rapid healing.

I feel that I still have a lot of potential improvement to collect, and hoping for more positive development.  I am able to work, and it is quite rigorous at times, travelling, carrying, walking steps up and down, rig different venues. But then there is not much energy left for being social. I can barely stand shopping now ;(

It is all about perspective. To compare myself to the “april 2012-version” of me – and not the least: who I would have been without Karolinska.

tiger

I found a perfect Tiger in the attic. Designed and sewn by me for a 9-year old some small eternity ago. The early onepiece, with tail, ears and paws.

Made me reflect about my level of energy back then. Pre MS-dx. My ambition-level is decreased now, but on the other hand I am not a perfectionist who panic if everything isn’t perfect now. Possibly a bit easier to live with.

But I can still sew! Thread the needle, fixing stuff.

I do a lot of the right things to achieve my improvements, but there are still potential to be even better. It is both liberating and frustrating to believe so strong that I can impact this myself. It would have been so comfortable just to lean back, with no sense of guilt.

Life is a constant battle between the right choice and the easy ones.

Well, it is summer now, no more real work (read: “paid”) for a couple of months. The perfect condition to live perfect.

Hairdresser tomorrow. These curls are getting totally out of control!

 

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.

 

10. months: Washing windows in the sun

Sunday march 24th was my 10-month anniversary, and I feel fine in so many ways. I have been working a lot lately, travelling around in Norway, giving courses, working long days, there has been trains, planes and high heels. And I love it 🙂 I am now 100% back, no more sick-leave, no more medications, just me getting slowly back to my life.

Since 9-month, I have been doing yoga twice a day – every morning and every evening. This is to get the routine and habit again – and after three weeks like that, I finally got the real flow-feeling. So now my mental training and my yoga is in place, and I am starting to give myself physical challenges.

I have a nice little walk in my neighborhood – 1400 meters. last week I spent 17:44 minutes on that round, almost 5 minutes improvement from four weeks earlier. Ok, I was really tired then, but it is the first time in more than a year that I actually have been short of breath after walking! Normally my leg collapse before I get tired. So this might be a good sign – or meaning that I am now in really bad shape….

And I have bben washing windows – from a ladder! WIth the sharp spring sun, it was too obvious that there had been too long since last time……

Vindusvask

My improvement are still in two categories: Improving from chemo – obvious. Improving from the MS – a bit more uncertain. But some improvements are so slow and so small that I hardly notice them. In those cases it is good to have Trond reminding me: “Are you aware that you have been walking around in this shop all alone, not holding me?” No, I wasn’t.

Last saturday my fourth cold this winter came creeping upon me. I am actually a bit tired of them now! So I took a really hot bath – to that extent that I needed help walking afterwards. Checked my temperature: it was 38,4 Celcius. It shrank rapidly to normal in about ten minutes, while my leg cooprated again, but it is interesting to see how one can induce fever. I think it helped, along with my mental techniques, because this cold has been just a small one 🙂