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Parkinson's drug a 'life-changer' for former nurse

Andrew Turner/BBC Jan Fuller is smiling at the camera while holding a mug of tea. She is wearing a red knitted top, white necklace and gold watch or bracelet. She has one hand on her kitchen worktop, near the controls of her cooker. To her left are some mugs and breakfast cereals. The kitchen cupboards to her left and right are a light wood effect finish and the tiles on the wall behind her are lime green.Andrew Turner/BBC
Jan Fuller says she would not have been able to make herself a cup of tea before starting the treatment

A 65-year-old retired nurse said she had got her life back thanks to a new drug used to treat Parkinson's disease which controls tremors.

Jan Fuller, who lives in Hopton-on-Sea near Great Yarmouth, Norfolk, was diagnosed with Parkinson's disease in 2015, but her condition worsened in recent years.

She told the BBC that some days she could not get off the floor because the tremors left her unable to move, which made her reliant on her elderly parents, friends and carers.

In September she became the second patient at the Norfolk and Norwich University Hospital (NNUH) to be prescribed the drug Produodopa.

She said: "I am hopeful that if this continues then at least I have a chance at living a life and having a future."

Andrew Turner/BBC A close up of a canula attached to the stomach of Jan Fuller, who is wearing a gold bangle, red knitted top and black trousers.Andrew Turner/BBC
The drug is administered through a cannula which has to be changed every day
Andrew Turner/BBC The pump device is white, with a grey front, featuring a screen and buttons. Mrs Fuller is inserting into a black bag which has straps to affix the device to her midriff. She is holding the device in her right hand, and the bag in her left. The worktop is wood-effect and she is wearing a red knitted jersey and black trousers.Andrew Turner/BBC
The pump is not easy or comfortable to wear, but it has made a positive impact on Mrs Fuller's independence

The drug is administered via a pump worn around the midriff, which measures 8in x 3in (200mm x 75mm) and weighs 307 grams.

A fine tube connects the pump to a cannula that has to be changed daily.

Ms Fuller said although the system was "not easy to manage", it had been "a life-changer".

"I had no quality of life, but now my pain is reduced and my ‘on’ time increased," she said.

"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.

"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."

She added: "I can’t thank everyone enough to be given the chance to benefit from this groundbreaking treatment."

Andrew Turner/BBC Jan Fuller, wearing a red-knitted jersey which shows a bulge above her left hip where the pump driver is positioned. She is holding a teapot, pouring tea. Nearby is two cups, a kettle and other utensils. There is a set of wood-effect cupboards to the left of the image; the tiled walls are lime green coloured and the kitchen worktop is black.Andrew Turner/BBC
Jan Fuller says the pump - visible under her jersey above her left hip - has given her back her independence

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 to stay on top of symptoms.

Ms Fuller added: "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.

"Produodopa is not a cure, but it does control some of the symptoms."

Norfolk and Norwich University Hospital A smiling Dr Vaclav Dosta looks directly at the camera as he is photographed wearing a white shirt, and black-rimmed spectacles. He has short dark hair. In the background is a window, which shows brickwork outside the hospital and another window.Norfolk and Norwich University Hospital
Dr Vaclav Dostal says the new drug is a game-changer for patients living with some conditions brought on by Parkinson's

Dr Vaclav Dostal, a consultant neurologist at NNUH, said it was the first new treatment for Parkinson's "in decades".

"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," he said.

"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."

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