The bionic woman
Diagnosed with Parkinson's disease, Ann Keilthy despaired until she had a life-changing operation, writes Joy Orpen
Sunday September 16 2007
Ann Keilthy is the embodiment of a bionic woman and living proof of the sometimes miraculous nature of modern medicine.
At the flick of a switch, she can turn from being a fully functioning woman to being someone full of tremors who is incapable of moving freely; another flick of the switch and she is back to "normal" again.
Her story is a very human one, full of the ups and downs of life.
Ann grew up in Dublin until, at the age of 15, her family moved to Cork. She did an Arts degree at University College Cork where she met Liam, her husband. Their lives together have been interesting. They have lived in the US and they have moved between Dublin and Galway with their daughters, 28-year-old Sharon and 23-year-old Debbie.
Their comfortable home in Blackrock is full of photographs and paintings mostly done by Ann, depicting the girls growing up.
All was pretty rosy until 12 years ago when Ann noticed her left hand shaking when she was stressed or playing the piano.
"I would also trip easily because it seemed my foot wasn't lifting off the ground properly," she says.
Then, one day, she watched a television clip of Mohammed Ali lighting the Olympic flame and when she saw that the tremor in his hand was similar to hers, she was aghast.
"To this day I can tell you what the commentator said: 'Of course, he has Parkinson's.' I felt a knot in the pit of my stomach because something told me that's what I had."
Ann tried to ignore the inevitable, but as her condition worsened she was finally forced to have the matter investigated by specialists. Eventually, she got the diagnosis she suspected -- she too had Parkinson's disease (PD).
Although she was deeply shocked, Ann didn't fall apart -- she is far too pragmatic for that.
Instead, she began to read everything she could about the condition, and discovered that Parkinson's disease occurs when the brain loses its ability to produce dopamine, a chemical responsible for controlling the body's movements.
If there is not enough dopamine, the signal from the brain to various parts of the body will be faint or non-existent, causing slow movements or stopping movement all together.
While there is no cure for the condition, much can be done to lessen the physical symptoms, which may include tremors, muscle rigidity, problems with balance, facial expressions, eating and swallowing.
These symptoms are sometimes mistaken for drunkenness or intellectually challenged behaviour. Depression can also be an issue.
On the medical front, Ann battled to cope with the drug prescribed for her. "It masked the symptoms but produced side effects that for me were intolerable," she says. She was forced to use other medications, but by 2002, even they were losing their efficacy.
However, she continued to research the condition and ways to alleviate her symptoms, which is how she came across deep brain stimulation (DBS). Could this really work? Was it possible?
There appeared to be reputable claims that it was. She approached her neurologist and although he initially rejected the suggestion, he later changed his mind and recommended Ann give it a try.
In 2003, she went to Frenchay Hospital in Bristol to undergo an assessment. "If you have any cognitive problems, it usually means it [DBS] won't be successful," says Ann.
She was also given a full medical examination with and without medication. "If you are not responsive to Levodopa (the main drug used to treat Parkinson's), then they may not operate," she says.
And although there are serious risks inherent in DBS, such as strokes, paralysis and possibly even death, Ann was prepared to take that chance rather than be forced to face a severely compromised future.
"The worst thing for me would have been to fail that assessment," says Ann.
Thankfully, she didn't and the team in Bristol could go ahead. First, they fixed her head in a frame so it couldn't move even a fraction while they bored through her skull.
Then wires thinner than a human hair were placed deep in the brain in specific areas. They were then secured at the skull before being run under the skin down the neck to the pacemaker in the vicinity of her waist. The operation took hours, but Ann says there was very little pain involved.
She now has a small device similar to a TV remote that she uses to control the pacemaker. She says she is not absolutely certain how DBS works, but it would appear it helps to control the flow of information in the brain, thus serving to profoundly lessen the severity of the symptoms associated with Parkinson's disease.
In Ann's case, the benefits of DBS are staggering. Previously, she could hardly move and was about to spend the rest of her life in a wheelchair. Her hands shook, there was a whole range of tasks she couldn't perform and the prognosis was dismal.
Now Ann can walk unaided. She talks normally and is very busy producing the magazine for the Parkinson's Association, along with several others.
Ann wants me to witness first-hand just how well DBS works so she switches off the pacemaker and begins to cross the room. At the outset, she looks like any healthy soul but, within seconds, I become alarmed as her hand begins to shake uncontrollably, her walk slows and her speech slurs. I am stunned by the speed and severity with which she succumbs to the full effects of PD.
She manages to stagger back to the table and reactivates the pacemaker. In the blink of an eye, she is walking and talking normally again.
One can but marvel that modern medicine can produce such profoundly positive results. However, this procedure is still in its infancy and is not yet suitable for all.
According to Ann, there are over 6,000 people in Ireland living with Parkinson's disease.
The World Parkinson's Disease Association says that about 15 per cent of those with Parkinson's are suitable for DBS, but that so far only about seven per cent of those have actually had the operation.
Still Ann is in no doubt that anyone who might be a likely candidate should go for it.
"I am advocating it, I really am," she says with deep and grateful conviction. "The op is like a miracle -- it's like walking on water for me."
And, as she says it, I see she has tears of gratitude and wonder in her eyes.
A cross-border weekend conference takes place in Cavan in November for anyone interested in Parkinson's disease. Contact the Parkinson's Association of Ireland office for details at freephone 1800 359-359. Visit www.parkinsons.ie or email parkinsonsireland@eircom.net.
