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"We'd do it again" Thursday, March 15, 2001 - Three of the patients who underwent the controversial treatment for Parkinson’s disease are glad they did. At the age of 49, John Cerullo is a fully signed-up member of what is referred to as the “hole in the head gang”. Back in 1995, he was one of the 40 patients selected to undergo the controversial experimental treatment in Denver, Colorado, to counteract the effects of Parkinson’s disease. “I can still remember the noise of them drilling the holes through my skull,” he says at his home in West Islip, New York. “It didn’t hurt, but I used to have a construction business and it was just like the noise of drilling through concrete.” Once his skull was pierced in two places, Cerullo’s brain was injected with foetal brain cells, designed to replace his own dopamine-producing cells whose disintegration results inevitably in the onset of Parkinson’s. “I’m not going to say I wasn’t scared,” he says. “I knew there could be complications. But I was prepared to take the consequences.” Six years on and the results of the Colorado treatment, headed by Dr Curt Freed, were published in the New England Journal of Medicine last week. They were swiftly picked up by the mainstream media, which widely interpreted the treatment as a disaster. Quoting Dr Paul Greene, one of the neurologists involved in the study, they pounced on the unpleasant side-effects, including violent and uncontrollable movements known as dyskinesia, which manifested themselves in five patients, or 5 per cent of the study group, after a year. Dr Greene told The New York Times that these disabling outbreaks were “absolutely devastating”, and the hopes of millions of Parkinson’s sufferers were crushed when he went on to say that the treatment should be stopped. “No more foetal transplants,” he said. “We are absolutely and adamantly convinced that this should be considered for research only.” Yet John Cerullo doesn’t see it like that at all — even though he was one of the five to suffer the alarming side-effects described so effectively by Dr Greene. Eight months after the cell transplant he began to notice his right arm moving “more and more each day”. It grew so bad that he could no longer hold a glass of water, and sometimes it jerked so hard that it threatened to dislocate his shoulder. At night it would be severely swollen and painful. But Cerullo was also excited. Although his arm was indeed a problem, the treatment had undoubtedly improved his condition in other areas. Most dramatically, he was able to abandon the wheelchair he had been forced to start using. “My greatest fear when I was diagnosed (at 30) was that I would be immobile,” he says. One of the symptoms of Parkinson’s is that sufferers are often reduced to a strange, quick shuffling, as if barely able to keep up with themselves. But after the transplant, Cerullo says, he started walking again and was able to “get a good stride going”. His feet stopped their painful cramping. Even more important, especially to his wife and three children, was the fact that his speech improved. “Before, I had been slurring my words and I was getting hard to understand,” he says now, with almost perfect diction. At first Cerullo’s wild arm was put down to levodopa, a common drug used to combat the slow speech and tremors associated with Parkinson’s, but which can often result in dyskinesia. At the time he was taking seven tablets a day, so his dose was reduced. But the symptoms persisted and it soon became evident that the violent movements were a permanent result of the treatment. He shrugs. “I knew there were drawbacks. I did feel like a guinea pig, but if you had this disease . . .” He gives a little harrumphing sound of exasperation. “Sometimes I want to tell people ‘if you could just experience one hour in my body’.” His arm was eventually brought under control by drugs and another operation, last December, in which an electrode was placed in his brain. Controlled by a small computerised device buried in the chest, this cutting-edge treatment is known as deep brain stimulation. “The only thing I suffer from now is sudden freezes,” he says. “My legs just stop. But I can drive, my reflexes aren’t affected. And now we can go to restaurants, whereas before I couldn’t hold a fork.” Would he recommend the transplant treatment to fellow sufferers? “Absolutely.” So too would George Doeschner, another guinea pig in the Colorado study who also suffered from a jerking arm, in his case the left arm. Ironically, what both men were experiencing was an overproduction of dopamine, a result of the brain cell transplant working too efficiently. As an explanation this was, of course, poor compensation. But like Cerullo, Doeschner is adamant that he has benefited from the treatment even though he was also counted among the five with disastrous side-effects. After the transplant, he says, the tremors that had plagued him for years disappeared. “It used to be a continuous battle to keep still,” he says, his speech clear. Now 57, he has had Parkinson’s for 17 years but is still able to work as an electrician. “You have to look at the overall condition of the person,” says Dr Freed. As director of the neuroscience programme at the University of Colorado Health Sciences Centre, he spearheaded the transplant treatment and is infuriated that critics have focused on the negative aspects of the study. “It totally diminishes what are really important findings,” he says. He also insists that, without question, the treatment will carry on. “Yes, it will continue, for we now have a base of experience,” he says, frustrated that the question should even be posed. "This research is an important milepost for the ongoing development of cell transplantation as a treatment for Parkinson’s. We are now testing ways to produce a better and more uniform response in individual patients.” Dr Freed acknowledges that of the participants in his trial, those aged over 60 (most Parkinson’s sufferers are in this age bracket) were more resistant to the effects of the transplant, but he emphasises that the majority of younger patients experienced significant improvements in a standardised test known as the Unified Parkinson’s Disease Rating Scale. Some continued to improve well into their third or fourth year after treatment. Another cause for celebration, he says, is the fact that 85 per cent of the transplants were grafted successfully. Lynda McKenzie was just 34, and a single parent with two young children, when she was diagnosed with the disease. “I thought it was stress,” she says. She owned a craft business and had started to notice that just occasionally she would slip up when making wreaths or teddy bears. “Somehow the message from my brain wasn’t always getting to my hands,” she says. When it got worse she decided it was carpal tunnel syndrome. “I thought I might need a small operation and I didn’t want to take the time off.” It took her GP less than half an hour to come up with two options — it was either multiple sclerosis or Parkinson’s. “That afternoon I went to the library and found an old book about Parkinson’s and scared myself silly,” she says. Fourteen years later and McKenzie describes her dyskinesia as “like being in an aerobic programme where your brain and body aren’t connected”. She, too, joined the Colorado study and wrote a series of moving notes about the experience. She recalls the excitement of being accepted for treatment: “I was positive this procedure would provide the ‘out’ for me from the clutches of this disease,” she says. “I kept picturing myself whizzing through the tests, astounding everyone with my vast improvement and ultimately becoming a spokesperson for the procedure.” It didn’t happen. As she said in an e-mail to a friend last July: “I wish I was one of those who are sure they have improved measurably.” McKenzie, now 48, says her symptoms are pretty much as one would expect after 13 years. She can freeze or move wildly for up to three hours. “You feel totally trapped in your body,” she says. But she, too, would have the transplant treatment again. “When people look at me now and hear that I was part of Dr Freed’s study, I can see them shake their heads as they think ‘Hmm, so that was obviously a waste of time’ . . . and ‘those poor patients who were given those promises and false hopes’. "Wrong, wrong, wrong! First of all, who knows what we would be like now had we not been part of the study. Secondly, look how much we learnt to enable us to go on to subsequent studies. “We all did it of our own free will. We all believed that we could be part of the solution, instead of whining about being part of the problem.” BY JOANNA COLES Copyright 2001 Times Newspapers Ltd. http://www.thetimes.co.uk/article/0,,7-99198,00.html . Lynda McKenzie - Bridging the Borders for PD http://www.geocities.com/mischefmckenzie/ . The Hole in the Head Gang http://www.geocities.com/janet313/pienet/hithgang/ . janet paterson, an akinetic rigid subtype, albeit perky, parky PD: 54/41/37 CD: 54/44/43 TEL: 613 256 8340 EMAIL: [log in to unmask] "A New Voice" home page: http://www.geocities.com/janet313/ . 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