A Norfolk woman says she is “eternally grateful” to be one of the first patients in the region to benefit from a new NHS treatment to control the symptoms of advanced Parkinson’s disease.
Sixty-five-year-old Janice Fuller has lived with Parkinson’s for the last 12 years and has recently started treatment with Produodopa, which uses a pump to steadily release medicine into the bloodstream 24/7.
The retired nurse, from Hopton, says her quality of life has been greatly improved since starting the treatment at the Norfolk and Norwich University Hospital.
She said: “Produodopa is not a cure, but it does control some of the symptoms. Over the last year I have spent most of my days in pain and having dystonic spasms. I was getting more ‘off’ time when my medication could not control my symptoms, than ‘on’ time. I was virtually housebound before and I had people come to check on me, to make sure I was able to get to the kitchen to get something to eat and drink.”
“I had no quality of life, but now, having been given the opportunity to take this new treatment, my pain is reduced and my ‘on’ time increased. I am hopeful that if this continues then at least I have a chance at living a life and having a future.”
Parkinson’s is a condition in which parts of the brain become progressively damaged over many years and it affects around 128,000 people in England. The main symptoms are involuntary shaking of particular parts of the body (tremor), stiff and inflexible muscles and slow movement.
NHS England approved Produodopa earlier this year so that some people with advanced Parkinson’s can benefit, which involves wearing a portable kit 24 hours day.
The treatment is a combination of two drugs – foslevodopa and foscarbidopa – and helps manage Parkinson’s symptoms, such as excessive movement or tremors. The continuous infusion enters the patient’s bloodstream through a cannula under the skin and is controlled by an automatic pump, releasing a steady flow of the treatment 24 hours a day to stay on top of symptoms. It also has the option of a manual boost if needed.
Janice was diagnosed with Parkinson’s disease in 2015, three years after her symptoms began, and started Produodopa treatment at NNUH on 23 September 2024.
“Before this treatment my quality of life was poor. For the first four days on the treatment I had no problems and only minor symptoms. Since then, I get episodes of breakthrough tremors and dystonia but I’m learning how to try to deal with these by using the pump and giving myself a higher or lower rate of the drug. My ‘on’ time is more than my ‘off’ time, most days, which is amazing.”
“It won’t suit everyone, the pump is 8×3 inches in size and weighs 307 grams and is attached to my stomach. The pump is tweaked by myself and managed by Parkinson’s Specialist Nurse Abi Mutimer who I can not thank enough for her never ending patience and support. I can’t say it is easy to manage, but for me it is a life-changer and I can’t thank everyone enough to be given the chance to benefit from this groundbreaking treatment.”
Dr Vaclav Dostal, Consultant Neurologist at NNUH, said: “We are proud to be the first hospital in the region to offer Produodopa to patients with Parkinson’s disease, which is a real game changer to help control symptoms. This is the first new treatment for Parkinson’s in decades – we are able to treat a very small number of patients at the moment, but hope more will benefit as we get this service established.”
