Or alternatively living through dying!
As some here will know, I was diagnosed with MND in 2017 having been to my GP with what I now know were the initial signs in May 2015.
As I am “arm onset” I am one of the more slowly developing people with this death sentence as some people die within six months or less after diagnosis whilst others e.g. patron Stephen Hawking had early signs in his 20s and died in his 70s – although some have suggested that Professor Hawking’s MND was one of the outlying variants.
Because there is no known cure at present and because the cause of the many variants of this disease are poorly understood, there is lot of snake oil around – e.g. stem cell treatment where some suggest that the connections between the motor neurones in the cerebral cortex and particular muscles can be re-established (the disease causes them to be disconnected as the neurone dies) by injecting stem cells into the spinal fluid and hoping they will migrate to the brain, become motor neurones and reconnect with the muscles – replicating a process that occurred in utero which of course is at the moment ridiculous.
But others are carefully stepping through the pitfalls and trying stuff.
My contribution is becoming a trustee of the Motor Neurone Disease Association in the UK, currently the only trustee living through MND and trying to synthesise some of the stuff that is going on partly for my own benefit and partly for others.
I am in awe of some of my colleagues who are living through dying in terms of the level of detail and expertise with which they approach living through dying.
Here are two examples;
And not forgetting …..