It’s impossible to believe only ten months ago the composed woman sipping coffee opposite had so little control over her body movements that she could not stop her head from compulsively jerking.
Lesley Barnard is the recipient of groundbreaking Deep Brain Stimulation (DPS) surgery, which has miraculously restored quality of life.
Between delicate bites of cake, the 62-year old Parkinsons’s disease (PD) sufferer recalls every moment of her epic fifteen year struggle with Parkinson’s disease (PD).
By all accounts at forty seven, Lesley was extremely attractive with deep brown eyes and thick auburn hair that licked her shoulders.
In 1998 Lesley was Deputy Principal of a training college with 1, 200 pupils under her supervision. Her workload was heavy, her stresses many. She was always an anxious person, who suffered from mild depression, but it never interfered with her work or social calendar.
When her thumb suddenly began misbehaving uncontrollably, flicking against her forefinger, her GP referred her to a neurosurgeon believing the cause of her embarrassing tremor stemmed from a problem in her neck.
“The neurosurgeon said that there was something in my vertebrae pressing on a nerve which affected my neck, resulting in my finger tremor. I needed surgery, but as I was still young I should have a physiotherapist sort out the problem. The physiotherapist subjected me to strenuous exercises which left me trembling everywhere. She recommended I see a neurologist.”
“The neurologist said my face showed no emotion, had a ‘mask look’ typical of Parkinson’s disease. He recommended I undergo a process of elimination; CAT scan and MRI, to prove that I was not harbouring a tumour.”
“Disbelieving him I joked, that the grape cure is fashionable. I would stick to that.”
However, a rigorous examination by a second neurologist confirmed PD. He wrote a prescription for medication.
Forced to confront reality, a stunned Lesley phoned her mother who tried to reassure her that there are lots of things one can do; she would be fine.
“I only learnt later, that other than medication to supposedly delay the progression of PD one should withhold from medical treatment for as long as possible,” she sights.
Still Lesley led a normal life, walking daily, working, socialising, until she reached a stage when she tired easily and began to feel she was underperforming at work, and applied to the Department of Education for early retirement.
The neurologist had over medicated Lesley. She developed heavy shaking of the head (dyskinesia). When another pill was added to the regime to counteract the dyskinesia, she blacked out for a few minutes driving and bumped into a car.
“I was trapped in a nightmare; almost totally incapacitated, in a deep cloud of depression and anxiety. Every day seemingly stretched into an eternity of suffering,” she shrugs.
Changes of neurologists brought ever changing medication, each with varying side- effects.
She remembers being unable to turn over in bed at night without getting out of the bed first, often falling from lack of balance, having an inability to speak properly, and periods when she could not think rationally.
In 2007on a new concoction of pills, Lesley wrote in her diary. “Mornings are terrible. First pill at 7.30am; cramps in my toes. At 12.30pm I am lame, immobilised and doubled over with nausea. However, I manage to get dressed and fasten buttons more easily and can drive. My balance has improved. But, my body feels like jelly filled with lead from the medication. Afternoons, my balance is terrible and I fall, but that is still better than the lameness and the nausea.
One time, the cramps in her toes were so severe that she broke a bone in her foot, and was encased in a ‘moon boot’ for six weeks.
Then in 2008, at a support group meeting for PD she heard about John Pepper, author of ‘Reverse Parkinson’s Disease”. In his book he claims he was 58 years old when diagnosed with PD (his symptoms began decades earlier). He immediately retired due to ill health and to avoid ‘the PD enemy’ he calls stress. Ten years ago he stopped taking medication. Now 78 years, showing no outward signs of PD, he leads an extremely active life, exercising for an hour every second day. Pepper devotes time to travelling the country supporting PD sufferers. While many physicians remain sceptical believing its unlikely to totally halt the progression of this degenerative disease, lists of people, including Lesley, attribute a great deal to his giving them hope and infusing them with a positive outlook.
When John and Lesley met he said he would teach her to walk without freezing or shuffling movements, but only on condition she discontinue taking all medication. Her neurologist warned her it could be dangerous unless she was placed under strict hospital supervision for three days but Lesley ignored the doctor’s advice not wanting to be subjected to hospitalisation.
“I did it for a day. It was catastrophic. I found myself paralysed,” she shudders.
Finally Lesley’s turning point. “I discovered my fifth, most knowledgeable and compassionate neurologist. He has turned my life around,” she says.
Dr. David Anderson vividly recalls Lesley’s first consultation. “There wasn’t quality in Lesley’s life. I lowered and stratified her medication dose, but still we couldn’t get things the way she or I wanted it.”
Over the next year and a half doctor and patient worked together during which time he insisted she attend regular biokinetic exercises. “Only then when we seemed to have the medicine operating at optimal level did I suggest surgery, and she entered Dr. Frank Snyckers DBS surgery enrolment programme.”
Dr. Anderson says, “One must choose their patients for Deep Brain Stimulation Surgery (DBS) very carefully. Current guidelines dictate the patient must have reached stage three of four stages of the disease; be under 75 years old, have symptoms that respond to medication, and be able to tolerate the surgical procedure.”
Dr. Frank Snyckers agreed. He discussed every aspect of the operation with Lesley, telling her only recently after years of intense research, a stage has finally been reached where DBS surgery can offer considerable and prolonged benefit at low risk to patients hoping for relief of tremor, rigidity, and very slow movement. The procedure involves introducing chronic continuous deep brain electrical stimulation to the brain without any tissue destruction, and only minimal, if any, brain scarring. A high frequency, low intensity current is applied to a chosen area of the brain. An invisible device similar to a cardiac pacemaker is inserted in the chest.
Dr. Snyckers explained there would be a significant improvement in up to 80% of her overall motor function, and the other features of late Parkinsonism may improve less than the motor skills. Most importantly, DBS surgery often reduces the need for medication significantly with 10-15% of patients requiring no medication.”Its regarded as turning the clock back by ten years” Complications of surgery are infrequent. “The benefits of surgery largely outweigh the complications and drawbacks’ of the operation, he said.
Lesley remembers feeling extremely excited. But the surgeon cautioned her not to harbour unrealistic expectations of what can be done. “If you are looking for significant improvement, then it is a very good operation,” he said.
Lesley says, “This was definitely no picnic. When I looked in the mirror before going into the operating theatre I wanted to weep, but I didn’t. My beautiful hair was all gone. In the theatre it was agony, The Pitts. I was nailed to the comfortable table and had to lie for four hours wide awake without being able to move. There was drilling and rattling of my teeth. I was asked to move my fingers and my wrist was moved backwards and forwards to test rigidity. I was asked to repeat the phrase “Good morning Mr Chips” approximately 100 times before and after lunch break. Different processes continued until the surgeon announced ‘”everyone to their work stations,” and they were the most wonderful words I have ever heard. The last six or seven hours of sheer agony was over.”
“General anaesthesia was used to insert a neuro-stimulator on my left side below the collar bone. I recovered from the surgery rapidly, was out of hospital after five days, but couldn’t walk at first. Fourteen days later the stimulator was switched on. Several days afterwards I was a completely new person.”
“I can’t sit here and tell you that I am now really very well. I was made very aware that this procedure is not a complete cure. Honestly in spite of the problems and challenges I still face, I do not regret having the DBS surgery. I take less medication and am grateful for the minor improvements with regards to some of the symptoms and I would recommend the surgery to anyone who qualifies for the procedure according to their neurologist.”
When I get up to leave Lesley insists on walking with me down the long grass pathway from her apartment to my car. She reads my mind. Yes, I know you think I look marvellous…still I hoped to be totally cured.”
FACT FILE - PARKINSON’S DISEASE
PD affects approximately 3% of the world population
Parkinson’s disease (PD) is a degenerative neurological condition, characterised by problems with body movements. Non-movement symptoms can also occur.
With PD, nerve cells in the brain, which transmit messages to the body, have an abnormally low level of a chemical (neurotransmitter) called dopamine in the brain. The nerve cells work using dopamine.
Some of the symptoms of PD are:
- Slow movements
- Stiffness
- Tremor
- Loss of balance and altered walking/standing position (gait)
PD also produces symptoms not related to movement, e.g. severe fatigue, pain, constipation, speech problems, swallowing, eating and drinking, memory problems sleep problems, mood swings, anxiety, depression, Anxiety and depression are not reactive, but actual symptoms caused by the disease.
On early diagnosis of PD doctors prescribe medication which supposedly slows progress of the disease.
Currently a PD vaccine has entered phase 1 of clinical trial. The study is funded by the Michael J. Fox Foundation to the tune of $1.5million, and will assess the safety of the vaccine in men and women with PD, with results expected in July 2014. This presents a promising future for PD and several other neurological conditions.
“Parkinson’s Disease and Related Movement Disorders Association of SA” is national organisation.
Tel: 011 787 8792 www.parkinsons.co.za
*http://brainblogger.com/2012/09/14/vaccine-for-parkinsons-disease-enters-phase-1-clinical-trial/