Huntingtonia is a foreign country – they do things differently there.
In cricket the toss of a coin decides which team bats and which bowls; In Huntingtonia though the toss of a coin selects who lives and who dies. The coin being tossed is invisible hidden in the genes where it has lurked for millennia, hiding as George Huntington (whose name was to be ascribed to the disease) wrote like ‘an heirloom from generations away back in the dim past’
Huntington’s disease has been in my life for as long as I can remember and goes back to those generations in the dim past whose names and stories I don’t know, but whose genetic fault has been passed down through my family wreaking unbearable destruction with every generation; a fifty fifty chance, a toss of a coin decides your fate. Life or death, as simple as that.
For me the genetic coin is still spinning; I have not taken the blood test to see if I will develop the disease. For my grandfather, mum, uncle and younger brother the coin was tossed and landed with tails, Its been Huntington’s for each of them. Like me, many people at risk do not take the genetic test and do not want to find out which way the coin has fallen for them. A child of a parent with
Huntington’s disease has a 50/50 chance of inheriting the faulty gene and if they have inherited it, it means living life with absolute certainty they will go on to develop the disease which they have seen destroying a parent and often aunts, uncles, cousins and siblings
Whilst knowledge about genetics is ever increasing and trials to remove or silence the defective gene are beginning, for many families it is the day to day challenges of living and caring for someone with Huntington’s disease that are the real battleground. The incessant fights to get appropriate health and social care for our loved ones, who face a disease so complex if affects every facet of their lives. The constant chorea, bodies that never stop twisting and contorting, performing a danse macabre which even in sleep does not stop. The loss of careers, driving licences, hope and ambition and ultimately the inability to think, walk, speak and swallow often in the prime of life when career, family and ambition are central.
Not long over ten years ago, my brother who due to the ravages HD has inflicted on my family I have parented since he was 12, began showing the familiar jerks and lurches that many with HD have, and which often lead to wider society assuming them drunk . These physical symptoms had I began to realise been preceded by a range of psychological symptoms; difficulty in social situations, obsessive behaviours and worse, a couple of suicide attempts.
But, back to the future; in 2016 we continue to try and navigate our way around Huntingtonia together, Mark is smart he has two degrees, one in English from Leeds and one in History from
Huddersfield but his ability to do even simple tasks is now disappearing. I shave him and help dress him; I manage medications, appointments and a seemingly endless list of etceteras besides. The involuntary movements mean for me and many others in the land of Huntingtonia an endless regime of cleaning up spills repairing broken belongings; trying and trying again to help someone whose brain is being destroyed by mutant proteins that simultaneously make their victims either unable or unwilling to acknowledge what the disease is doing to them and those around them.
Huntington’s disease is a disease which has been kept secret in families for generations and it is for that reason that I made the giveatoss4HD video as both a tribute to those loved ones I have lost who were each more than Huntington’s disease patients, but were teachers, engineers academics and a thousand other things . I also hope to raise awareness of a disease which affects many families yet still has little grip on the public consciousness; its genetic transmission means unless it affects your family directly it is not something you will ever need to face, that is its blessing in a way but also for those affected a curse that hides them from the understanding of the wider world.
Thanks so much for sharing .