The last week of January, 2005, so nearly two and a half years since my diagnosis of very aggressive SPMS, and very nearly three years since my right arm almost completely gave out, leaving me unable to do up the buttons on my shirt unless I struggled with my left hand for half the morning. Forget shoe laces. Until the actual diagnosis I was living with the vain hope that it would just get better. After all it had happened before, twice, but a few weeks later it was completely gone. This time, though, the weeks passed by and there was not the least improvement. Far from it: things were going wrong in other ways and quite rapidly. Much of this I was completely oblivious to, which maybe, if there had not been a way out, would have been the best thing for me. Like someone who has a bad stroke who is unable to pull out, at least I would not have really known much about it. Other people would have suffered but not me.
David's mind though, went back to his early student days and the slightly later days when he was studying neuro-pathology at Oxford. Then he met people in the last stages of MS and they always appeared to him that chronic infection was involved somewhere. But what? People had various ideas over the years but nothing had ever been proven. Chlamydia Pneumoniae had not even been discovered. That happened after he started work here in Bedford and I remember him telling me a few weeks ago of the day they first cultured it in his lab. At that time, in the 1980s it was only thought to be responsible for low level community acquired pneumonia.
I developed my first very benign MS at that time. It didn't really trouble me for years. My eyesight was perfect, various numbness's would come and just as rapidly go, then my right arm gave out for the first time. Now I had to do something, so I first went to my GP. She was on maternity leave so I saw a former member of the practice, brought back from retirement. Not looking in my notes where he would have seen a drawing of my left thigh, with a contour line showing where the numbness was when I saw a previous GP, when I was not long out of college, this man blithely said it as a trapped nerve, so come back in thee weeks if it was no better and he would arrange some physiotherapy. That was no good to me, so I went to see an osteopath. When I went for my fourth appointment he told me that I had better see my GP before he did anything more. He had a book about MS open on his desk. I was horrified. It couldn't be MS, not me, he was being silly, I was so healthy apart from my arm. So I went to see the physiotherapist of the local football club, who said it would probably be better by the new year, and it was, of course. But this time, in the summer of 2003, the weeks were dragging past.
The week following my diagnosis David searched and searched for information, would maybe have started me on doxycycline anyway, but then he discovered the work going on at Vanderbilt and well, it worked! So today I am not, against the expectation of "my" neurologist, sitting like a useless lump in the corner of some nursing home, or worse but I have started work on two big acrylic canvases, 2 x 3 feet and nearly 3 x 4 feet. My mind is sharp and clear and thinking up lots of new ideas for painting, which I can now do, upright on an easel, for hours at a time.
Set against the taking of the antibiotics and adjuncts, though, both of which, I cannot express too much, are needed, you need to help the process of recovery yourself as much as possible. You can't just sit there and wait for improvements to happen, as I am sure I have said somewhere before. I have an airwalker in one corner of my studio, which I use at various points in the day, just for a few minutes at a time. This helps with the stiffness I can still feel if I have been sitting or standing in one position for too long. I have found by trial and error that this suits me better than doing it all in one go. I have taken to listening to Cuban dance music on my headphones whilst doing this, because you can get into a good rhythm and the minutes go very quickly. Variety being the spice of life, I alternate this with scooting or cycling around the block, or the park, which is only down the road. Both help with any residual balance problems and once you get going, the faster you move, the better you can balance. I can't do this for too long, yet, though, partly because I panic about getting home, would you believe, but also because it tends to tire me out for a while, which hinders my painting. Likewise with my cello. I reckon it is good exercise for the hands, fingers and arms, but I can't do it for too long for the same reason. I am gaining strength all the time though, so before long I will be able to do more of everything for longer, without having to choose between them. Of course, living in a high ceilinged three storey house also gives one quite a bit of exercise before you think of anything else. We both have studios and studies on the middle floor, but everything else is either up or down. Perhaps I should wear a pedometer just to see how far I do walk in a day!
One other thing I know I have said before is that there is a tendency to put out of your mind the really bad periods, or in fact, as in my case, jus to not remember them at all. There can be a feeling that you are not making as much headway as you had hoped. In this regard I think a journal can be very helpful. I can't talk! I was keeping one at first, then got annoyed and deleted it. I know then that I wasn't thinking about posting my experience to maybe help other people, but now I wish I hadn't done that. David does remember everything about how bad I was, so he can help me in that respect. I think I was so bad, actually, just before starting treatment that I wouldn't have recorded anything terribly accurately......Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.