When I first found out that my mum had an incurable brain disease, I avoided Google like the plague not wanting to know anything about the prognosis.
But when it became evident life was never going to be the same again, I started venturing down the rabbit hole of just what Progressive Supranuclear Palsy is.
Quite simply, PSP is a bitch of an illness.
It is a neurological disease that attacks nerve cells in the brain, interfering with the connections needed to walk, talk, eat and move – therefore leaving individuals severely disabled as their ability to do these things rapidly degenerates.
While I know what is coming, I am also in denial. Some days it gets me right in the heart, other days I talk about it matter-of-factly as if reciting PSP’s Wikipedia page.
I have been to PSP meet-ups and seen people in wheelchairs, people drinking out of beakers, people wearing sunglasses in dark rooms because of the eye complications and heightened light sensitivity the disease brings, and even though we have the diagnosis on paper I refuse to believe this will happen to mum.
Maybe denial is why I found myself launching into practical mode, thinking of things I could do so that I wouldn’t have to feel.
In 2019, the year of mum’s diagnosis, I campaigned to the Royal College of General Practitioners to include PSP on their curriculum for trainee GPs to learn about and was elated when they agreed at the review meeting to include it on the syllabus. While this is not a cure, it can help prevent years of misdiagnosis and confusion that people with PSP go through before being passed from doctor to doctor to doctor in search of answers.
Next, I wanted to raise awareness amongst the public so that if anyone found themselves or a loved one experiencing symptoms, they might have a familiarity or understanding of what PSP is.
So, I began curating a comedy and music night to take place on May 9 during PSP Awareness Month, to raise money for the PSP Association – the only UK charity on a mission to fund research and ultimately find a cure for Progressive Supranuclear Palsy.
Comedians Rosie Jones and Maisie Adam had agreed to take part, along with LGBTQ New Comedian of the Year, Charlie George. While Propaganda founder DJ Dan was planning to take us back down memory lane for a night of 90s and 00s tracks.
However, as the COVID-19 crisis snowballed and the world went into lockdown, it soon became clear the event could not go ahead.
I’ve been thinking of ways to still fundraise in quarantine, and with skydives and bungee jumps also out of the question, the idea of an ice-cream marathon sprang to mind.
I know it’s not 100 laps around a garden or climbing Mount Everest on my stairs, but 24 hours of ice-cream for breakfast, lunch, dinner, and snacks is my way of ‘doing not feeling’.
Thanks to the wonders of online delivery, I’m currently eyeballing the local’s Spar menu in preparation of Saturday’s mission.
Again, it might not be a quick fix for a cure, but to keep shouting through the megaphone about this unknown illness may just help another sufferer searching for some answers.
If you can spare a penny or two in exchange for a day of sugar crashes and freeze headaches, it will go to a very, very good cause. Thank you for being a good sport and please click here: Progressive Supranuclear Palsy ice-cream marathon.