Or maybe not! Have seen some nice improvements in how fast and far I can ”row”, though. Last week I did 570 metres in seven minutes, today I did 646 metres also in seven minutes. Last week I did a total of 620 metres before my physio stopped me, today I did 968 metres. I was left on the rowing machine for longer this time, it has to be said, but I do feel my stamina is getting better.
Another noticeable improvement is that I’m now able to rest on the floor on both hands and one knee and lift the other leg off the floor unsupported. Till about 1½ months ago I could only do this on the softer surface of my bed so, tiny as it may seem, this is an achievement. I know because I’ve tried – and failed – many times before.
Finally, though this is not an improvement I’ve noticed myself, many people have told me independently of each other that they think my speech got better. Al said so, my parents commented on this, some friends from university I see about twice a year said in June it had gotten louder, that I spoke more than before, and with more confidence, and Lynn & Gregor, some Scottish friends I last saw last summer, commented in July that my speech had gotten ”stronger”. So, though I haven’t felt this myself, I’m kind of thinking so many people can’t be wrong.
August 22nd, 2008
Back home and must say it’s nice to have lots of space again so I don’t constantly bump into things or there simply isn’t room to get my wheelchair into various places. Don’t get me wrong, where we were was very nice and spacious for the London area but compared to our home (in a not very densely populated part of Denmark so house-wise you get a LOT more for your money here than around London) it was fairly small.
Still feel no progress that I can specifically attribute to HBO treatment. So have to remain a very patient patient, hoping I’m yet to see the benefits of HBO assisting the stem cells in developing.
Do continue to see slight, very slowly developing signs of improvement, though. At this rate I’ll probably be able to walk again unaided in my 80s which would be something of a paradox seeing that I started to need a walking frame in my 30s. Anyway, I walk the same distance between our sofa and my wheelchair every day and write down now and then how many steps I need to take to negotiate that distance. On 18 May I needed 19 steps to do it, today I managed to do it with 11 steps (12 before HBO). So my balance has obviously improved since I can now take longer steps without falling over.
August 6th, 2008
In Hemel Hempstead north of London now and drive to Walthamstow every day. Or rather Al drives the car and I’m just a passenger.
I’ve done 12 ”dives” now (am doing 40) and so far feel no effect from the HBO treatment. Doing the dives is an experience. You get locked into a fairly confined space (like a diver’s chamber) for 1½ hours with a few other people (in this place anyway, some places have chambers for only one patient). A mask is fitted over your face if you’re large enough, babies and small children get a plastic hood over their head (which is then filled with the air they’re to breathe). Unfortunately many children absolutely hate it and as they cannot in any way be made to comprehend WHY they’re being subjected to such a ”horrible” thing it is not uncommon for them to struggle, cry, scream, and try to open the door (which thankfully is bolted from the outside during sessions). ALL the time. And then 1½ hours is a long time, though of course I’m full of sympathy for the poor distressed children and their poor parents who have to find the inner strength to enforce something their children don’t want and don’t understand is for their own good.
The place – MS Action – is nice, relaxed, and full of friendly people. They’re used to seeing many people with varying degrees of disability and though I feel desperately sorry for everyone life has treated harshly – and there are so many – in a warped kind of way it’s kind of nice to suddenly feel normal again. Usually at least 98% of people around me have no major physical disabilities and I often feel new people I meet see nothing but the wheelchair. Not so at MS Action, it just isn’t a factor for people there. And that, frankly, is a liberating feeling.
My eyesight has continued to be better in the morning so I can still make out the time on my mobile phone when I’ve just woken up.
July 15th, 2008
Renewed MRI showed no difference to scan pre stem cells. Shame really, because such evidence of improvement would have made it a lot easier for me to raise money if I wanted to go back. Now I just have to speculate that I would benefit from further treatment, it stands to reason because my cerebellum was quite severely damaged when I fell ill so there’s a lot to repair. But I can’t PROVE more stem cells would be useful to me.
I do continue to see very small signs of improvement, though, so something’s still happening. The last couple of mornings I’ve been able to read the time on my mobile phone. My eyesight has been much too jumpy for that just after waking up for years so that can only mean my nystagmus got a bit better. Will need to observe if that’s an ongoing trend as it’s early days yet.
Managed to ”row” all of 530 metres on Thursday.
This summer I’ll get four weeks of hyperbaric oxygen treatment (HBOT) in Walthamstow, northeast London, UK. Many people do HBOT a few months after stem cell treatment as it’s then meant to help the cells do their ”job”. Many thanks to Al’s cousin Jeremy who administrates a fund and took care of that fund donating a grant that pays for my treatment!
June 28th, 2008
AND another few weeks gone.
This time the biggest event has been Nicholas’ 7th birthday. He had a party. So we had the “pleasure” of 11 boys around age 7 for a whole afternoon. I still get very tired just thinking about it. At that age children seem unable to speak, they SHOUT every single time they utter something. It culminated in Rasmus, Nicholas’ friend, announcing joyously that he could stay until 5.30 pm as he lived nearby and could just walk home himself. “But, but”, I stuttered, “the party finishes at 4″. “That’s ok, I’m allowed to stay”. Great, just great. Meanwhile Nicholas’ room had got to look like a tornado had swept through it. So the whole experience was somewhat trying though also entertaining at times. Like when the boys discussed what constituted bad language in English – a language they don’t really speak, I think children start learning it when they’re 10 in Denmark, at 7 they more or less don’t know it at all. Still: “‘Shut up’ is not nice” one said. “‘Shake that ass’ is bad too” another contributed. At which point I had to turn my back to them so nobody would notice me laughing. Nobody had even the faintest idea what it actually means, yet one of them remembered that particular phrase. I can only assume that he watched the Eminem (and some other guy who’s name I don’t recall) video. Anyway, despite not knowing the meaning they all agreed that they shouldn’t say that. Which is fortunate because I don’t think it would have won them many friends around the world. And luckily nobody asked for a translation, saving me from having to resort yet again to “go ask your dad” when faced with an awkward question (like “how are babies made, mum?”)!
Still no significant progress, though when my physiotherapist was here last I could for the first time since falling ill hold my leg up unaided whilst on hands and knees.
At the end of the week I’m going for a repeat MRI scan of the cerebellum to see if it shows any difference from the scan I had done prior to having stem cells.
June 15th, 2008
Another few weeks gone. Still no significant progress. Do continue to feel better balance when sitting without back support, though. In fact, each night when I sit on my bed and take off my socks I lean back as far as I can just to marvel at the fact that I can now control the movement so much better than before and don’t just collapse backwards anymore. I know, I’m obviously easily amused these days! Have also started re-doing the old heel on shin movement and find this is a bit better/easier than when I did it in China. Other than that my physiotherapist needed to support me slightly less when walking on Monday. And I could rest on both hands and one knee only for a little bit longer than the week before.
In a moment of weakness – or was it temporary insanity? – I confessed to Else, my Danish physiotherapist, that Martin got me to walk with support from the back only. Apparently that is more difficult for me than the way she supports me so yesterday she tried it also. Have to say it certainly didn’t get any less scary since China. Managed not to close my eyes in terror this time, though.
May 23rd, 2008
Well, it’s official, in the eyes of my children I’m absolutely ancient (and, it logically follows, an incredibly slow learner as I’ve not yet mastered how to walk despite being of an obviously very advanced age). Had an interesting conversation with them this morning because they felt hard done by having to cycle to school about 5 months a year (only when it’s dry). So I played the usual parental “you don’t know how lucky you are, when I was a child”-card and told them that I always took my bike to school whether it rained, snowed, or blew a gale. My reward was the following exchange:
Nicholas: “Was the car invented when you went to school, mum?”
Rebecca: “Yes, but it was the funny, wind-up kind”
Now, I know I wasn’t quite born yesterday (!), but still…..
As usual no big progress to report. Was pleasantly surprised, though, when my physio came today and I was better able to balance for a few seconds on both hands and one knee only than just a week ago.
May 6th, 2008
Time for an update though in truth there’s not a lot to tell, just feel I should let people know I’m still alive. I’ve now attended my weekly exercise class three times. As expected I don’t really enjoy it but I don’t mind doing it as I then build up muscles I otherwise never have any use for anymore. And there’s various equipment there that allows for a completely different session from when my physiotherapist comes to my home. For instance I use a rowing machine there. The first time I was on it, it actually timed out because it couldn’t register any activity (causing my physiotherapist to joke it would be a bit of a struggle to get me ready for the Olympics). Last Thursday, though, I managed to make it “move” all of 300 metres. Guess I should be thankful for small mercies.
Read in newspaper there was bad accident on the train line between Beijing and Qingdao. Many dead, many injured. Know that as there’s about 7.5 million people in Qingdao (larger population than ALL of Denmark) it’s highly unlikely to have involved anybody I know but can’t help being concerned anyway. Guess that’s a side-effect of being from a small place (20000 people) – if something bad happens here on that kind of scale, somebody I know will inevitably have been in it.
April 28th, 2008
Still no big, significant changes. Still soldiering on with daily physio. Tiny changes noticeable, though – a.) improved balance (trunk) when doing exercises with Danish physiotherapist, b.) improved control of hands so I can now more easily drink with only one hand on glass without spilling half of contents, c.) slightly faster walking (less time for therapist to take nap between my steps!). Which gets me to think of when Nicholas was 3 and said to me comfortingly: ”When you grow up, mum, you’ll learn how to walk”. Of course! That’s the problem. Not old enough…..
April 14th, 2008
Pathetic, I know, but I’ve actually wanted an occasion to use that particular quote for years. Seems that there’s no end to the amount of totally useless knowledge I carry round with me that’s NEVER needed.
On the subject of pathetic, Al spent most of the day yesterday recovering on the sofa after having had too much “Easter Beer” (strong) on Saturday night. Scott reluctantly (yeah, right) helped him finish the remaining bottles from a few weeks ago. As a result trying to interact with Al yesterday was a bit like waking the dead. In fact, the only time he actually came to life was late in the evening when I said goodnight and temporarily blocked his view of the television screen so he had to change position to see the very important events of the FC Barcelona-Getafe 0-0 draw that was showing at the time. Moved with surprising speed given the rather delicate condition he was in. Priorities, I guess.
Anyway, not much new to report. I continue to do physiotherapy on a daily basis and on Thursday I’ve even managed to talk myself into starting a weekly exercise class at my local physio centre. Those who’ve known me since childhood/early youth and have thus – over a prolonged period of time – witnessed my rather intense dislike of personally attending organised exercise will be amazed because it is SO not my “thing”.
Have noticed slightly better balance when sitting. Not much, but going in the right direction. And of course Rome wasn’t built in a day (don’t I know it)…..
April 7th, 2008
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