UK Edition
'I got Parkinsons aged 40 - but a pioneering operation has given me back my family life'
By the time Sarah Webb found herself frozen in her children’s school playground, unable to move due to the debilitating effects of Parkinson’s disease, she had “nothing to lose.” Then just 45, her body was, she says, “deteriorating before my eyes. I had begun to admit that [it] was beating me, taking my speech, my personality and in some ways my overall life. I had to fight back, and for me the answer lay in DBS.”
Around 600 patients undergo DBS or deep brain stimulation each year. Though the procedure – which involves planting electrodes into the brain to control movement – does not work for everyone, for Sarah, who was battling the disease while raising her two young sons, it was a necessary step to address the tremors and walking problems that medication could no longer could.
“In DBS, very fine wires are carefully inserted into the brain to electrically stimulate particular groups of brain cells involved in controlling movement to adjust their activity,” explains Professor David Dexter, deputy research director at Parkinson’s UK.
“These wires are then connected to a battery pack which is usually placed under the skin in the chest. When the neurostimulator is switched on, the electrodes deliver high frequency stimulation to the targeted area which changes some of the electrical signals in the brain that cause the symptoms Parkinson’s.”
The success rate can be dependent on where the electrodes are placed in the brain, Professor Dexter adds, “which itself depends on which symptoms need to be most urgently tackled.” To hit the subthalamic nucleus, where DBS has been used for years to control stiffness and slowness, or to limit the side effects of medication, the success rate has gradually increased, with up to 80 per cent of patients seeing a significant improvement in their symptoms, 15 per cent noticing moderate benefits and five per cent not finding any at all.
For Sarah, the effect of the surgery was incredible. “It gave me back my life and gave the boys back their mum,” the now 48-year-old recalls. And it had the further benefit of bolstering her when she faced a breast cancer diagnosis 11 months ago, she says, as the success of the operation helped her cope better with a mastectomy and subsequent six months of chemotherapy and radiotherapy.
Diagnosed with Parkinson’s nearly nine years ago, Sarah, from Kingston-upon-Thames, is one of the 127,000 people in the UK living with the disease. It is caused by the death of the brain cells in an area called the substantia nigra which leads to a reduction in dopamine, a messenger chemical that controls movement, mood and cognition. Around one in 20 of those told they have Parkinson’s are of working age and around one in 100 develop symptoms before the age of 40.
The former sports PR who once won a tennis scholarship to an American university watched helplessly as her body, her chief ally in her sporting days, turned against her. She struggled to look after Jasper, now 11, and Connor, nine, her tremor leaving her unable to button their coats or lace their shoes. As they got older she would stay at home resting, while her husband, Tim, who works in the City, took the boys to play rugby or cycle around Richmond Park. “I was missing out on their childhood,” she says.
Sarah increased her medication, but as the Parkinson’s symptoms got worse the relief provided by the drugs lasted for a shorter period of time and the side effects, including debilitating anxiety, were becoming unbearable.
She had already done her own research, talking to her Parkinson’s nurse about about DBS, so “making the decision to have it wasn’t hard – for me it was a chance to be a mum again.” Available on the NHS, Sarah spent more than a year undergoing tests from memory to arithmetic, and MRI scans, to check her suitability before she was finally given a date for the operation.
For one appointment, she had to stop taking her medication. “That’s when I saw how much my body had changed. The tremor was horrendous. That gave me the strength to think ‘I can do this’. I was ready for the DBS.”
Seen in the past as something of a treatment of last resort – although that is beginning to change – DBS does not attract the same exultant headlines as others offering new Parkinson’s hope. Last month, a treatment called glial cell line-derived neurotrophic factor (GDNF), where drugs are inserted directly into the brain, was heralded as the most promising development on the horizon, and is thought to have the potential to restore damaged cells and ease symptoms of the disease.
But deep brain stimulation, which was first carried out more than 20 years ago, remains a valuable Parkinson’s treatment, and new research even suggests that it may boost the strength of brain cell ‘batteries,’ mitochondria.
Sarah still had to prepare herself and her family for the possibility that something may go wrong. “I prepared scrap books for the boys showing how much I loved them, and got everything in place in case I didn’t come home.” Her sons were then aged nine and seven: “I’d hoped to wait until they were older but that wasn’t to be,” she recalls, adding that “Tim supported me completely – he realised that we needed it as a family.”
In fact the eight-hour operation was more successful than she could have hoped. When the machine was turned on three days later, and she and her neurologist fine-tuned its settings, “I walked back to the ward with no tremor, pain or aching. It was amazing.”
It took six months to get Sarah’s machine, medication and diet in sync to reap the optimum benefits of DBS. She is very aware that not everyone will see the same outcome and knows it is not a cure, and that the relentless progression of the Parkinson’s continues. If she switches her machine off, via a hand-held controller, her severe tremor returns within seconds: she had to be strapped down to control during her radiotherapy when the DBS machine was switched off.
Now, she has come through the cancer – though faces a precautionary mastectomy on her other breast and regular check-ups – leaving Parkinson’s the major roadblock in her way.
But DBS has made an immeasurable difference: with a five-year battery, once switched on it can operate uninterrupted in her body, and Sarah feels as in control as when she was first told she had Parkinson’s. “It means I can effectively press a button and be a great mum again – back to how I was when I was first diagnosed. I’ve even managed to halve the amount of medication I take. I can go on bike rides and run with the boys around the park. I can just be with them all day rather than sleeping. They are almost able to see the person I was before.”
And so she continues to rebuild her life piece by piece, with a personal trainer to improve her fitness and a positive attitude that refuses to be dimmed. “All I want is to get back to some kind of normality, to play with my boys, see my friends, and enjoy time with my family. I take none of it for granted.”