Disarmed by Clare Park© They searched every nook and crevice for some clue from the past. Text by Buz Williams
The NHNN is the largest centre in the UK for the diagnosis and management of Parkinson’s disease and is actively involved in cutting edge research including a number of experimental trials including new drug treatments, gene therapy and cell based therapies. The NHNN is part of University College London Hospitals NHS Foundation Trust.
Patient Buz Williams cared for by the hospital since he was first diagnosed with Parkinson’s at the age of 29 features in a collaborative series of photographs taken over the past 18 years by award-winning photographer Clare Park.
The photos explore his responses to his family and living with the debilitating, chronic disease. He and his wife, Debbie Green, have written thought-provoking captions for each image.
The images go on display until 14 June at the Lecture Theatre Foyer, 33 Queen Square WC1N 3BG, part of the NHNN. It is open weekdays 9am-5pm.
Buz said: “I would like people to be moved by the photographs one way or another - it doesn't matter which way - stirred or amused, shocked or inspired.
Trampoline by Clare Park© “Like the salmon’s instinct, I possess strength of will and mind that compels and propels me continually and metaphorically upstream
“Those who have Parkinson's start their Parkinson's life on the day of diagnosis and then they 'hang round' till the illness runs its course, so the pictures altogether, as an entity, could offer others the opportunity to take another look at their illness and how they might deal with it.”
Since the late 1970s, he has been under the care of specialist consultants at the NHNN including Professor Andrew Lees, who has achieved international recognition for his work on Parkinson’s disease.
As part of his treatment programme, having been told that Deep Brain Stimulation would not be appropriate, Buz opted to try a new therapy to reduce the distressing symptoms of the disease such as tremors, slow and rigid movements and balance problems.
Professor Lees said: “While the drugs used for Parkinson’s disease can control the symptoms and improve quality of life, they do have considerable side effects and it was because of drowsiness and slight blunting of cognition that Buz was changed to his present treatment Duodopa.
“The therapy isn’t a miracle cure but, for some patients in the advanced stage of the disease it can bring greater stability and sharpening of mind, where other treatments have failed. One intriguing observation is that in artists there is some evidence that the drugs Buz has been taking can in some situations increase artistic creativity.”
Duodopa (L-dopa medicine in gel form in cassettes) is administered continuously via a portable pump directly into the duodenum through the outer tube and connections from the small hole in the abdomen to a permanent tube and inner intestinal tube. The infusion increases the chemical dopamine, boosts signals between nerve cells and reduces the symptoms. Buz was the second patient at the NHNN to receive the treatment at a time when there were around 50 patients in the UK undergoing this treatment. He is now one of 100 Duodopa patients nationwide.
The pump system enables the gel medication to be absorbed at a steadier and more effective pace, than more traditional methods.
Unattached Strings by Clare Park©…a simple concept like a chair instead of being just a seat to sit on, more often would trip him up stumbling and biting his ankles or his brain
Buz added: “Without medication, none of these photos would exist, as I am unable to move or am disabled by shaking. The polar opposite of this when on medication is, of course, dyskinesia when my movements are involuntary, uncontrollable, and often excessive, fast without focus. I lurch and spin and flail, my head and feet go in opposite directions not necessarily at the same speed!
“Although I have been part of the system for 30 years I had reached the end of the sort of treatment provided by medicines, syringes and Apo-go. Since 2008 I have had a new lease of life given to me by Professor Lees and his team and the medical staff of the UCH Gastro Endoscopy unit and Duodopa nurses who have provided continual support in care, last minute procedures and surgical back up when required. It is hard to imagine that a better team and medical staff could be found anywhere.”
Buz first met Clare through his wife Debbie, a teacher of movement for actors: the two friends originally met in their teens, whilst training as ballet dancers at the Rambert School of Ballet. Buz trained as a theatre director and the photographic imagery is derived from their shared professional backgrounds of theatre, dance and movement.
Clare said of her subject: “Buz is an extraordinary man, both humorous and wilful! Placing himself in the public sphere and gaze gives him a sense of power and self-recognition at a time when control is diminishing in his everyday life. “
- Professor Andrew Lees is a former President of the International Movement Disorder Society (2004-6). In 2006, he was recognised by the American Academy of Neurology for his outstanding work. The following year he was elected Fellow of the Academy of Medical Sciences and received a NIHR Senior Investigators Award in 2008. In 2010 he was elected an overseas member of the Academia Nacional de Medicina, Brazil, one of only four UK clinical scientists to be awarded this honour.
- Award winning photographer Clare explores photographic self image through the use of symbol and metaphor having developed this idea through personal narratives of her own life journey and her reflections upon being a dancer and Vogue model. Her strong personal style is evident in the posters for theatre and dance companies, such as for the Royal Shakespeare Company and the Royal Opera House, Covent Garden. Clare won the Royal Photographic Society’s 153rd International Print Exhibition 2010 with a portrait of Buz titled “From Real to Sacred” and following this was supported by Parkinson’s UK to exhibit Breaking Form: Buz and Parkinson’s at the World Parkinson Congress in Glasgow 2010.
- April 11th - 17th is Parkinson’s Awareness Week held by the charity Parkinson’s UK.