Dear Koo,
I stumbled upon your web page regarding Chris during a routine browse for stem cell information on the web.

As an researcher in the properties of bone marrow derived stem cells and their differentiation to bone forming cells, my scientific experience may be of some interest to you, but I have had other experiences that may be of greater relevance to you now.

Seven years ago, still cause unknown, I suffered a rare acute blood clot, known as Wallenberg's syndrome. This is a very specific kind of stroke, I experienced symptoms that were very similar to those described about 100 years before by the physician acredited with first describing the syndrome. In brief, we have a part of our brain close to the back of the neck, about the thickness of a pencil, called the medulla oblongata that houses the bundle of nerve fibres that interconnect the brain with the body. A small artery supplying this region makes a hairpin loop and that tight bend is sometimes prone to being the site of a blood clot. One might say that the stroke leads to oxygen-starved cell death in a similar manner to someone sawing through a pencil. If you reach the pencil lead, chances of death are high because you affect the nerves that control breathing. But in my case, the saw stopped short, and I managed to reach hospital in time for anti-thrombotic drugs to take effect and the situation could stabilise.

There was paralysis to one side of my face, double vision and a change in voice (partial paralysis of a vocal cord meant that I used my neck muscles to speak, resulting in a high pitched squeak). I couldn't coordinate the movement of my right leg, combined with a loss of balance that meant I needed a wheelchair to get about. An associated risk was sleep apnea....I could stop breathing in my sleep. That was seven years ago. Today I cycled into work. Last week I gave a lecture in a neighbouring university with my normal voice. The only sequela of any note is that there is a slight loss of tactile sensation on the right side of my torso, but even that is improving. If I don't tell people I have had a stroke, they don't know. In effect, I have been incredibly fortunate to make an excellent recovery. It could be attributed to my endogenous stem cells doing an excellent patch up job. After sleeping for about two weeks, I spent three months in an excellent rehabilitation centre and I learned a lot about recuperation there. First off, I found myself amongst a collection of stroke victims and one is not sure how much they understand or what they are thinking. But with time, one sees the human being emerge from the mask of immobile limb or disfigured expression. Personally, I never gave up, I just knew that I would be getting better (my uncle was a Prof of Medicine who assured me that things would improve) but what no one knew is how far the improvement phase would progress. Improvement came slowly, like finger nails, nerves grow slowly. But a good omen was that some signs of recovery came within the first couple of weeks. It started with a burning sensation on the paralysed side of the face...this would come and go...but it was as though the connections were being re-established and I learned to welcome the mild pain, with it would return motility to the facial muscles and I could smile again.

The most significant general statement about the rest of my recovery can be summed up by the phrase "use it or lose it". By this I mean that recovery came first to those parts of the body used most. Only by continuously exercising and striving to get back to normal movement did things improve. One simple thing made enormous difference to my being able to walk again...a wedge! Incredibly simple, the main point of the wedge was to have my leg in the position it should be as I walk...in effect I had to re-teach my automatic nerves what the correct posture should be...then it was as though a "memory" was re-awakened and parts of my body seemed to be saying "ah...that's how it should feel, yes we have a circuit for that already, it's just been out of order for a while, but it can be brought back to use again if you keep firing it up and insisting that we use it." As an other example of a useful exercise they had me make a doormat out of rough cord to get tactile sensations back in my fingers (actually, when I started I really couldn't feel how rough the cord was and my finger started bleeding!)...then there was hot and cold treatment, holding ice (I could do this for ever, watching my hand slowly going blue) and putting my hand in warm sand. The same was done with the torso (sauna and cold baths) to get some sensation back. The double vision was a problem, but fortunately after 6 months it started to go away and now I see fine.

Clearly my condition was very different to what Chris has been through and I imagine his condition is much more severe...but if my experience has served for anything it is to allow me to convey a message of hope. I can sense that Chris already has the best therapeutic approach possible...lots of love...this has to reach beyond the illness and reach Chris, the real old Chris who is there, but trapped by a body that is functioning in a manner that is as strange and as foreign to him as to everyone else...the key thing to remember is that the real Chris of old is still there...just as I was always "me" throughout my ordeal. It takes a long time to recover, every small step of improvement is really a leap and something to build upon. Then there will be some aspects that might never return as they were before, but Chris is a survivor and I have to think that I am member of the 50% that survive Wallenberg's syndrome. I wish you both every blessing along the long and arduous road of recovery and I look forward to learning of Chris's progress through your reports.

Best wishes,
Jorge

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