We had our six-monthly visit to the neurologist yesterday. He doesn’t pretend that he can offer Don any treatment, or any kind of hope really, but he monitors how Don is going, and always stresses that if anything changes or there is any sudden deterioration or anything that is worrying us, to get in touch at once.
As soon as we came into his office, he said with some surprise, “Don, you seem quite improved since your last visit! I heard you talking to the receptionist and was aware how strong your voice was, compared to your last visit. And you’re sitting up quite strongly in the wheelchair, whereas I remember last time you had to be supported by the head rest.”
He continued with his tests, which are in another room but seem to consist mainly of Tell me if this is sharp or blunt? Is this hot or cold? When I do this, tell me when the tingling stops. And, Push hard against me with your feet, with your arms.
Then he had a bit of a conversation, clearly trying to assess the mental state, so when they came back into the little room where I was waiting, I helped by holding out the crossword I was doing and said to Don, “Five letters, Soviet labour camp” and without even hesitating Don said “gulag”. (Yes, I was impressed too!)
The doctor was clearly rather bemused by all this. He finally said, “Don, you do have primary progressive multiple sclerosis. That means what it says, that it is a gradually progressive disease and the best we can hope for is to slow down the deterioration or hope, at best, that the condition will plateau for as long as possible. But I have to say, you are showing clear signs of improvement in almost every area. I hasten to add, the improvement is not huge, and there is no Lazarus turnaround, and basically your situation hasn’t changed” (I presume, meaning he still needs the nursing home). “But there is obviously some re-myelination taking place.”
I’ve explained before that the condition of MS occurs due to the eating away of the myelin sheath around the nerves, and in fact the reason the symptoms are so different for various MS sufferers is that you can’t predict which nerves will be affected. I said to the doctor, “I thought you told us once before that the myelin sheaths can’t regenerate.”
“Yes,” he said. “It was believed that was so. We know so very little about multiple sclerosis, despite all the research that is going on.” He gave us a smile and said, “I don’t want to see you for another year, unless something changes. But whatever you’re doing at present, I suggest you keep doing it.”
Thank you, God. And thank you LDN.
