Progressive Supranuclear Palsy remains relatively unknown to the common man. Molly Mileham-Chappell investigates this rare neurological illness, its impacts and the whirlwind it causes.
It is a common misconception that ignorance is bliss. But in a world where you struggle to communicate, cannot feed yourself or balance, understanding and empathy is vital.
Wherwell Village Hall in Andover, Hampshire is nothing special from the outside… Inside, eleven despairing voices are waiting to be heard and helped.
Progressive Supranuclear Palsy, known as PSP, is the condition these people are suffering with; a rare terminal neurological illness, that takes over the body as nerve cells in the brain die. The cause, however, is unknown.
Step through the wooden doors and you will find the people sat down at the beautifully decorated pink and floral table are similar; dark sunglasses, wheelchairs and others in better health standing attentively at their side, assisting their every need.
I find it a bizarre illness in the way it breaks your body down but keeps you locked inside…” – Louisa Roberts-West
The local monthly support group here at Wherwell, run by the PSP Association (PSPA) represents others across the country; small in numbers, but big on heart. Local PSPA Group Coordinator Volunteer, Louisa Roberts-West is charming and enthusiastic providing the sufferers with a glimmer of hope in their darkest days.
The forty-five year old is ideal for the job; her mother died from PSP in 2006 at the age of 66, therefore Louisa knows exactly how traumatic PSP can be; “We thought she was just drinking a bit too much.” Early symptoms can often suggest Parkinson’s disease. Despite Louisa’s loss, she boldly set up the group a year ago. “I asked what people were hoping to get out it and people said they came for the social.”
In 2007, doctors suggested to Ted Slack, 69 from Winchester, that his symptoms were a result of his Type 2 Diabetes and Dementia. Ted was only formally diagnosed a year ago when further symptoms began showing; “My balance is problematic, speaking is hard and I can’t write anymore.”
Symptoms vary from case-to-case, meaning support is often neglected. Louisa suggests a possible reason for this; “Because PSP is rare, trying to get medical professionals to commit time to come to a group such as this when the relevance may only crop up once in their career, is hard to achieve.”
George Short, 81, from Bristol vouches for this. Upon discovering his wife Diana had PSP, her doctor claimed she was “rather special” as his only PSP case. Sadly, Diana passed away this year at the age of 82, five years after her initial diagnosis. Diana was unable to speak or change herself, requiring catheters to remain dignified.
George believes he now has a duty of care to other sufferers. “My hopes are that I can be of assistance to people coming onto this journey.” George’s efforts meant Diana received adequate support. Others, however, aren’t so lucky.
Talking to Louisa in the kitchen after the session ends, it becomes clearer why support for sufferers differs. “Somewhere along the line, they’ve fallen through the system because PSP is fairly unique.”
As her mother’s condition worsened, the little things began to affect Louisa. Her reliance on pureed food made Louisa anxious; “When feeding Mum, you thought every mouthful was potentially fatal from choking, many times a day.”
Stephanie Steward, Community and Event Fundraiser for the PSPA sympathises, saying, “The disease is so cruel, and because there is currently no treatment and no cure, people often feel very helpless.” With no government funding, the PSPA are reliant on voluntary donations. The £1.2 million raised last year was divided between funding programme work for the present, as well as research for future benefit.
Fergus Logan, Chief Executive of the PSPA, has been instrumental in launching the UK PSP Research Network, in hope of generating greater research applications. “Academic researchers may believe PSP might be a good way to learn greater truths about more common conditions.” Fergus continues, “The basic education of the medical profession is something to work on as well”, as diagnosis is currently based only on clinical judgement.
From local cake sales to the 60 people who ran for PSPA in the 2014 London Marathon, raising the profile of the PSPA has never been more imperative. Stephanie says, “If people are ever faced with a diagnosis of PSP, we want them to know the charity exists and where to come to straight away.”
As for the future of the Hampshire Support Group, Louisa described her perfect ending; “I would love to find a cure…. I find it a bizarre illness in the way it breaks your body down but keeps you locked inside…” With no sign of PSP decreasing anytime soon, it is clear that individuals like Louisa are leading the way in raising awareness of PSP. And as for the present? Louisa humbly admits, “I hope the group continues to grow and that somebody one day might help me run it.”