I woke up the nexy morning in my hotel room to an industrial scene outside the window - not unlike the industrial north of England of my youth but with blue skies and snow on the ground. This was kind of how I was imagining Moscow to be, not realising how unrepresentative this first glimpse was. In reality, at street level the city is bright and bustling, the new office blocks and apartments in the centre mixing with the older austere soviet-style government buildings and even older beautiful churches with those golden onion domes. Although the suburbs weren't as salubrious, things weren't anything like as grey and depressed-looking as I had thought. Not like this in the provinces, I was told, where people are resentful that much of the wealth created since the downfall of communism has been sucked into Moscow to the neglect of everywhere else.
Lada for sale - one careful owner
Marina (left) keeps a watchful eye
After breakfast, I was met in the lobby by my minder for the week, the wonderful Marina. She was the perfect guide, patient when waiting for me to take photographs of a subject from every conceivable angle, even taking me to other sites with more photogenic potential when others would have completely lost the will to live - speak to Sue! Several times, she rescued me on the Metro when, easily-distracted by something, I wandered off and could have been lost without trace, unable to read the crylic signs which make no sense to a westerner. There she was, locked on to me in a discrete kind of way. I'm sure she must have been trained by the KGB.
Marina took me to meet up with lovely Katya, one of the nurses on the project who visits MND patients at home. We travelled to see one of her patients, Galina, a retired bank manager. I had to purchase a Metro ticket and, not yet being used to the currency and running out of hands, I had to resort to holding a wad of notes in my teeth whilst rummaging in my wallet. Katya was somewhat dismayed by this and kindly advised that it probably wasn't a good idea for reasons of hygiene. Once a nurse, always a nurse ...
We arrived at Galina's apartment block and Katya was keen to point out that this wasn't representative of the average patient as she lived in one of the better apartments and could afford to pay for a full-time carer. Social services don't exist in Russia and if you can't pay, you don't get. We were welcomed at the door by Galina's lovely carer who came to Moscow from the one of the post-soviet states to work for her some years ago before Galina got the disease. She has since stayed on to look after her loyally and lovingly ever since.
Galina has little leg strength and has lost her voice but can communicate using the computer. Through the project, she has acquired a ventilator for intermittent assistance with breathing but, like many people, is finding it difficult to get used to. During our visit, a community nurse, again paid for, arrived to administer physiotherapy. She was one of those stern no-nonsense sort of nurses and gave Galina a right going over. I was only watching but it left me feeling exhausted.
In the afternoon, I met with Vasily, a young respiratory physician who is part of the Team. Unusually, but essentially for patients who are unable to get into hospital, he visits them at home to advise on breathing and artificial feeding tubes. The gentleman we visited was losing weight and not too keen on the idea of a tube inserted through the abdominal wall into his stomach. Vasily tried to persude him to have a nasogastric tube inserted through the nose but, after several attempts, he wasn't able to tolerate it.
On the way back by Metro, we talked about the dilemma. I said that I had found the same reluctance on the part of patients to gastrostomy tubes back home which must seem very alien when first mooted. Some eventually come round to the idea but many passively resist, knowing that this is going to lead to them dying sooner. Although those around naturally fear "starvation" to be a terrible way to go, patients themselves do not necessarily appear to suffer, the increasing sleepiness and weakness from this and the MND's progression seeming to mitigate otherwise distressing symptoms. In any case, I said, medications for physical or psychological symptoms are always there as a backup. But therein lies the rub. Drugs like morphine are registered only for cancer patients in Russia with huge resistance to prescribing them in patients with other illnesses such as MND to relieve discomfort caused by increasing immobility or breathlessness. Even if doctors could get hold of it, there is the fear that their livelihood may be under threat from the authorities who might clamp down on them for such irregularities. Vasily told me the story from several years ago where police stormed an operating theatre where the surgical team were harvesting the lungs from a brain-dead patient for transplantation. Everyone in the theatre was arrested and for several years, no transplants of any kind took place in Russia for fear of the same thing happening. So against this background, doctors like Vasily really are between a rock and a hard place when it comes to trying to relieve suffering from breathlessness and under-nutrition.
That evening, Natalia took me to see a film on the final day of a Moscow film festival which happened to be about MND. Although made in the UK, it isn't due to be released here until June. Called "I am breathing" (click here for a link) it is a documentary about a thirty-four year old man called Neil who lived near Harrogate in Yorkshire with his wife, Louise, and one year old son, Oscar. Just after Oscar was born, Neil first started to get the symptoms of what was eventually diagnosed as MND. Neil & Louise started writing a blog of their experiences which they wanted to do in order to raise awareness of the disease but also as a legacy for their son who wouldn't remember much about his father before he died. When it was suggested a film documentary be made of his final few months, Neil and Louise were more than keen and their moving, funny and touching experiences are a wonderful testament to their combined strengths and the skill of the film-makers. See it if you get half a chance.
Altogether, an emotional day.