Posts filed under 'Uncategorized'
Still nothing new on stem cells so far. Am trying to raise enough money to go back. Many thanks to everyone who very generously and kindly contributed towards my treatment. I’m still quite a bit short to go back to China but what you raised and donated has gone to HBO treatment and temporarily towards paying off some of the loan for my first trip so your money has not gone to waste. I’m using it to reduce payment for my treatment so far until I get enough together to go to China again.
For this aim I’ve applied for a lot of grants (private). It’s probably never easy to get money off people and organisations that never even met you but I suspect that getting your share of an amount that is based on what has been made from stock and share investments is even worse in the midst of a financial crisis! Whatever the reason, grant applying exercise has not done me much good so far. Looking at the bright side, though, I won’t need to worry too much about childcare by the time I go back because at this rate children will be old enough to look after themselves by then 
.
August 2nd, 2009
I don’t actually have anything new to say but for the benefit of those reading blogs when deciding whether to go (I know I did and was disappointed many stopped immediately after treatment) I thought I’d better report that I still haven’t lost the progress I gained in the months/year after treatment. There is nothing new but nothing’s lost either.
Also I heard about a BBC programme that was somewhat sceptical of the benefits of current stem cell treatment. Using the case of Dakota Clarke to illustrate. I didn’t actually see the programme myself but Al (who lives and works in England Monday to Friday) did and he said one of the issues was that a test done before and after treatment showed no difference despite the parents being convinced there had been progress. On that, I think many tests in the West won’t show the progress made by stem cells. E.g. I had an MRI of the cerebellum that showed no difference yet I’ve done other measurable things – myself and with my physio – that demonstrated progress. That has given me certainty that progress – however small – actually exists and isn’t just in my head. It would be helpful if Beike suggested some simple before and after tests (for instance to be done every two months after treatment) for every patient but until that happens – if it ever does – I think many people will have to make up their own ways of measuring progress independently of what the medical establishment in the West has to offer. I bet many people like myself are running a one-man-show (or one-family-show) when it comes to stem cells because those who care just don’t know enough to advise and those who actually know enough don’t care enough to get involved. And as the ”system” doesn’t really seem geared towards measuring the results of stem cell treatment it is up to the patient/the patient’s family to think of relevant ways of monitoring proceedings. If a need for that is felt of course. Sad but the way it is. In my world at least.
May 24th, 2009
Today it’s a year ago I left China. Time really does fly.
My take on the whole thing is that it definitely made a positive difference physically so that I can now do some things that I couldn’t do at all before while other things I just got better at. Psychologically as well as I’m now sure that something can be done to at least better my situation despite various expert assertions in the West that my condition is static. I didn’t see as much progress as I HOPED for but, I think, as much as I could realistically expect given the extent of damage to my cerebellum. I don’t feel the progress has been lost but that it has slowed down so I more or less got all I could out of the stem cells I already had. I also feel I would benefit from having more stem cells and build more on top of the progress I already had. So I would basically like to go back and will do so when I get the money together. Which could be a while but that’s the intention anyway.
Finally, while progress seems to have slowed down, I did experience one new thing recently that was immensely satisfying to me: As part of my daily physio I’ve been practising the movement of standing up since I was in China. At first I held on to the end of my bed as it’s too heavy to move, then I held on to the back of a chair with both hands, then with one hand (i.e. slowly increasing the need for my own stability/lessening the amount of support used). Recently I’ve been able to stand up very occasionally without holding on at all. Now it’s very rare that I can do this but it’s still very significant for me as for 6+ years I’ve not been able to do this at all.
March 15th, 2009
I’m still working on getting back to my pre cold/flu state and am encountering a few ups and downs on the way. My balance holding myself up on just one knee and the opposite hand is definitely better than before, though oddly not so when I do it with my physio.
As for walking I haven’t yet dared to try my 9-step-walk again (don’t feel I’m even close to being able to do it), instead I do walking exercises at the end of our double bed holding on to the banister (is that the right word?). As I still have a totally irrational fear of letting go with either hand when I walk I challenge myself to do just that and walk holding on with just one hand. Just as well I don’t have a weak heart! But actually I find it easier than when I last tried it some months ago.
Then there’s rowing. Last week I did 1,000 metres in 7 minutes which is an all time best, this week I struggled and only managed to do 940 metres.
The last time I measured speed using the metronome I was up to 80 beats per minute doing the index fingers to nose tip exercise and could follow the rhythm of 184 beats per minute when turning my hands.
All in all things are going okay though my physical low points remain more noticeable than until far into November.
February 6th, 2009
Happy New Year to all!
I haven’t written for ages but first I was unwell with something worse than a normal cold but not quite the flu. Just seemed to go on and on forever (approx. 3 weeks). Then there were all the Christmas festivities and a lot of guests staying over for New Year. So on account of first being too weak and unwell, then too busy, I haven’t done regular physiotherapy for a while. Started again with my daily routine last week and though it’s not as bad as I expected – I “rowed” 940 metres in 7 minutes on Thursday so that was nearly as good as my best – I can tell there’s some rebuilding to do to get back to where I was. So that’s what I’m focusing on at the moment.
January 12th, 2009
Actually, just walking would be good, never mind the winter wonderland. I wouldn’t be surprised either if there’s no snow here until January or February when people don’t want it anymore and the main thing it does is mess up the traffic. I can’t remember the last time we actually had snow for Christmas.
Anyway, my news this time is Christmas related. Because from late November it’s not uncommon for Danes to pass the time by producing various Christmas ornaments (klippe julepynt), often from brightly coloured paper. The level of sophistication varies in accordance with age and ability so everyone can take part. And this year, for the first time since I fell ill, I’ve managed to produce a Danish style Christmas paper star. Anyone who ever tried this knows that it requires a certain level of dexterity to do so. Therefore I was pleasantly surprised that I succeeded. It’s not that I know for a fact that I couldn’t have done this before. After all I didn’t attempt it. But I know that just last year I wouldn’t even have bothered trying, I would have seen no point in subjecting myself to such a failure. This year it seemed possible to achieve and, lo and behold, I did it. It’s not the prettiest star I ever made but it’s certainly the one that caused the most personal satisfaction!
Made in Denmark by ataxic hand – THAT very star
November 29th, 2008
Back and it’s wonderful to be home though I can’t quite believe it’s time to think of Christmas again already.
Went to my physio class yesterday and “rowed” 975 metres in 7 minutes. So again I beat the record of how far I can go in that space of time. My previous best was 890 metres. My illness has taught me to appreciate small achievements so I’m pleased with this (for now).
My Danish physio said again yesterday she thought my walking had improved since I returned from China.
November 15th, 2008
Back at MS Action – and it’s nice to see everyone again – for more HBO. The first few days are exhausting so I’m SO tired. Was ready for my bed about 7 pm but Al is watching Manchester United vs. Glasgow Celtic (football/soccer) and making LOUD noises. If he showed even a small fraction of this enthusiasm for domestic chores we would have the tidiest house in the northern hemisphere. Meanwhile Villareal is beating Aab (Danish team) 6-3. Spectators there certainly getting their money’s worth. But are there any defenders playing that game?
On the flight over there was the usual seats in upright position, fold tables etc. at the end. Then a stewardess asked me to open my blind which I had lowered maybe 5 centimetres to keep the sun out of my eyes. “Otherwise the plane will crash” Al commented as I, somewhat incredulously, complied. Well, anything for safety I guess.
October 22nd, 2008
Another one of those “time for an update but don’t really have much to say” entries.
Anyway, now I can do my “walk” in 9 steps every time I do it. It’s hard work and requires a lot of concentration on my part but if I focus it’s relatively easy – well consistently possible – for me to do. I still don’t think I could possibly do it with any less steps than 9 – whilst needing frame for walking anyway – but I am, though, pleased with the progress of needing 22 steps to do the same distance in March to being able to do it in 9 steps now.
My physio suggested I soon try another, more “advanced”, type of frame for walking as she feels my balance has improved enough for that and says that she needs to support me less when walking.
Last week in the gym I “rowed” 890 metres in 7 minutes.
Using the metronome I can now do the index finger to nose tip exercise at 66 beats per minute and turning hands at 168 beats per minute.
Am going back to England on 19 October for more HBO treatment. This time for three weeks.
October 8th, 2008
Today I managed to do my “walk” in 9 steps. Was thinking that I would need to fly across the room to get it any lower.
“Rowed” 670 metres in 7 minutes yesterday.
And I’ve now managed to lift one leg and the opposite hand when unsupported on hands and knees on the floor. Yet another totally unthinkable achievement a couple of months ago so even though I can only just do it on one side and only for a very, very short time on the other side I’m pleased with this.
Finally I’ve taken to use a metronome (what people use to set the pace when practising music) to measure how quickly I can do some of the more neurological exercises I’ve been introduced to over the years. On 7 August I could do index finger to nose tip, alternating hands, at 44 beats per minute. Today I could do it following the rhythm of 58 beats per minute. Similarly I could turn my hands (another thing neurologists always ask me to do) at 128 beats per minute on 7 August and at 160 beats per minute today.
Am thinking progress – if still painfully slow – has sped up a bit recently. Might be an effect of HBO treatment??
September 12th, 2008
Previous Posts
