The stars are us
Light up, just light up
Oh, the stars are us
Just look up, look up
Light up, light up
Oh, the stars, they are us
Just look up, light up
Look up, light up
Everybody needs a little hope
On Thursday evening I fully intended to avoid watching the BBC documentary “The Parkinson’s Drug Trial: A Miracle Cure?” because I was scared, I am scared. My fear of being given some hope is totally unbearable, as there can be no true despair without a sliver of hope. I don’t mind the pain but it is the hope that kills you. At least this is the way I defend myself from potential wounds. I have said innumerable times to anyone who will listen (but mainly to myself to reinforce the barricades) that the there will not be a cure in my lifetime. I cannot exist in any other paradigm than this, I dismiss other people with PD as old shaky feckers and whinging self obsessed moaners. I must, I need, to create a distance between them and me, cause I don’t really have PD, not like them. I am not like them, I can’t be. I just can’t.
Against my better judgement I turned on BBC2 at 9pm, even though I forbade my Mum from doing so. The programme was brutal, Roman Coliseum brutal and there is no exaggeration whatsoever. Forty-two patients chose to undergo complex brain surgery and have months of infusions via a port embedded into the side of their skull, some with a placebo and some with the glial cell line-derived neurotrophic factor. The surgery was medieval in its appearance, with nothing resembling a guaranteed outcome. Having access to the holy grail of GDNF was not even guaranteed. Yet these forty two warriors had given up their bodies with a faint hope of being cured and transforming modern medicine. There stories were heart breaking; Bryn Williams from Glasgow is still in his forties and has two children, just like me. But he is obviously not like me because they are not like me, except they are. Bryn verbalised one of my most deep seated fears, the stuff that keeps you up in the middle of the night for hours, the stuff the blights your waking hours too. What if I can’t walk my daughter down the aisle? This thought destroys me and apparently Bryn too. All I want to be is a proper Dad, surely that is not too much to ask? Bryn is willing to risk life-changing brain surgery for his girls. A warrior. A Dad. Just a Dad. I will not lead my daughter down the aisle in a bloody wheelchair, no way.
Tom Isaacs who set up The Cure Parkinson’s Trust 12 years ago was also one of the warriors who put their lives at risk for a potential cure. Tom had the most obvious and debilitating symptoms and the most to gain. However, Tom leapt off the screen, he was larger than life and had a world class line is self deprecating humour. A staggering example of the human species; resilient, indefatigable and optimistic, with the tenacity to make a difference for all those with PD, thanks. RIP Tom.
Tom’s wife, Lyndsey, spoke tenderly about her husband and how she was beginning to morph from wife to carer. This cuts straight to central truth about PD, it changes relationships, no matter how much you work tirelessly to prevent this from happening. I have told my wife she will not become my carer, I do not want my children to watch me disintegrate, I want to be turfed into a care facility if this highly likely situation were to occur, I don’t want to be burden and I want my three babies to be unencumbered by a father-shaped albatross and I want to them reach for the stars, not to have worry about me. Dramatic, a bit, but nevertheless I could not be more sincere, it is either care home or a one way ticket on Swiss Air. This is non-negotiable, they say that pride comes before a fall, well they are are too late, that ship sailed years ago.
The next group of warriors we met were the medical professionals. They were extraordinarily skilled, driven and fundamentally good people. Professor Steven Gill, and the trial’s principle investigator neurologist Doctor Alan were the talking heads of the documentary, but far more significantly the whole process was their ‘brainchild’ (apologies for the pun). In 2012, the doctors from Frenchay and Southmead Hospitals in Bristol recruited volunteers to participate in a £3m trial, ending in 2017, to tackle the world’s second most common neurodegenerative condition. Ultimately, the decision on the future of GDNF will be based on commercial viability and the effectiveness of the treatment compared to other therapies for Parkinson’s. The good news is that Pfizer has bought itself an exclusive, worldwide option to license MedGenesis’ glial cell line-derived neurotrophic factor (GDNF) protein and convection enhanced delivery (CED) technology for use in researching Parkinson’s disease treatments. Big pharma does not have a conscience and is solely in it for the shareholders, so Pfizer getting involved can only be a good sign. Pfizer had in 2018 revenues of between $53 billion and $55 billion, they don’t make too many bad bets, hopefully.
Has my paradigm shifted? Too early to say, being a stubborn and single minded bugger has worked reasonably well so far. I am not sure that I am brave or strong enough to embrace hope like Bryn & Tom were. I am not sure that I am a warrior like them. They were able to see the light that I am scared of. According to Desmond Tutu ‘Hope is being able to see that there is light despite all of the darkness.’ Maybe I need to open my eyes a little wider, but what if the light has been extinguished? I am not sure I can take the risk.