Life after surgery

A type of brain surgery called deep brain stimulation (DBS), is sometimes used to treat people who have had Parkinson's for some time and whose symptoms are not controlled effectively by medication.

Here are some stories about people's positive experiences with deep brain stimulation.

Cliff Williams's story

Cliff Williams has been able to take control of his Parkinson's enough to play a part in family life again.

Naseem Salim's story

I had Deep Brain Stimulation at Queen Elizabeth Hospital, Birmingham, in January 2007. Having lived with Parkinson’s for 12 years, I was on a regimen of 22 tablets a day and having increasing problems with movement in my arms and legs.

Nine months on from the surgery, my drug regimen is down to just four pills a day and I now have much more control over my body. I’m still working on getting the medication and stimulation exactly right with my Parkinson’s nurse, but on the whole the last few months have been much better. It’s great having an expert nurse to provide ongoing support after the operation.

Before the surgery I wasn’t able to hold a cup of tea or peel potatoes because the tremor in my arms was so bad, and my body was very stiff all the time. Now I am able to do cooking and gardening, which I haven’t been able to do in years.

Sue Moore's story

I am married with five children and was diagnosed with Parkinson’s in September 1994. My initial symptoms were a deterioration in my handwriting and tremor in my hand. Doctors first thought it was repetitive strain injury (RSI) and I was referred to a physiotherapist who realised it wasn’t a physical problem and sent me back to the orthopaedic consultant. This consultant wasn’t able to diagnose my condition so I went back to my GP. Eventually I visited a private neurologist and Parkinson’s was diagnosed.

I initially tried to continue living my life, ignoring the Parkinson’s and managing my condition with medication.  But gradually this became more difficult. From 2002 I was basically confined to the house, or if I went out I had to use a wheelchair.

At the end of the year in 2005, I was referred to a neurologist and assessed for suitability for deep brain stimulation.  I underwent the tests, was deemed an appropriate patient for surgery and finally had the operation in November 2006.

DBS has given me a new lease of life. I have been able to cut my medication down by half, and the major change is that I no longer need my wheelchair and can easily manage to walk to the shops unaided now without worrying that I’m going to fall over.

John Platt's story

I was diagnosed with Parkinson's in 1991 when I was only 47 years old. I was surprised to hear the words "You've got Parkinson's disease", as it was a condition I associated with older people.

At first, I was determined to carry on as normal. The disease only seemed to affect my right arm (unfortunately I am right handed and I couldn't play trills on the piano). Gradually it got worse and I had to write with my left hand. As a teacher I found this stressful as I had to do a lot of writing. After five years I gave up teaching.

After living with the condition for 15 years I had become increasingly reliant on my wife, Jacqueline. I needed her help getting out of bed, getting dressed, and doing other basic everyday tasks. Involuntary movements resulting from my medication also impacted upon my day to day life.

Things began to look up when I was accepted for Deep Brain Stimulation (a form of brain surgery) at Frenchay Hospital in Bristol. Friends were worried when they heard the operation, but at Frenchay you are not awake during the operation. The surgeon inserts wires into the brain and also implants a neurostimulator into the chest. The operation did not hurt at all and I have not suffered from headaches or anything like that.

I'm pleased to say that since having the surgery a year ago my life has been transformed, as have the lives of those around me. I can get up and get dressed on my own, the number of drugs I take has been halved, my wife can go out without worrying about what difficulties I will get into and I've regained my sense of smell. People have even commented that I'm three inches taller!

Although only a small number of people are suitable for Deep Brain Stimulation surgery, I would recommend anyone offered the opportunity of surgery to take it. My wife and I are so grateful for the team at Frenchay Hospital for all the care and professional support they have provided. Without them, our lives would be very different.