George Shepherd has a comfortable home filled with books. It has a beautiful garden, full of plants. He has a photographic laboratory with many records that, as a botanist at Unicamp, he carried out in many places and during the many expeditions he made with his students in order to collect plants and discover new species. He left Scotland in 1975, at the age of 26, at the invitation of the then rector Zeferino Vaz. He was hired as a professor at the Biology Institute (IB).
In all these years, he has had an intense career in every way. And everything was going well until, at the age of 48, he began to notice a discomfort in his health: a small tremor in his arm. But as he had just returned from a trip, he thought he had tried too hard to carry his luggage. The shaking persisted and worsened. Stiffness came. He couldn't relax his arm and leg. Still, it took two years to seek medical help. At this point, he no longer slept. His leg became so stiff that he couldn't relax. He developed Parkinson's disease.
Twenty years after his diagnosis, George believes that his experience can help people a lot. Today he understands that, with knowledge and support from a healthcare team, he can have quality of life, despite the symptoms. He actively participates in meetings of the Campinas Parkinson Association (ACP) and, this April 11th, will take part in raising awareness on World Day to Combat Parkinson's Disease. To mark the date, the botanist held, on the 8th (Saturday), a virtual exhibition of photographs from Patagonia, where he has been four times. The event was at Sesc-Piracicaba.
George believes he has found a way to alleviate his illness – take photographs of plants. It already has over 400 gigabytes of high-resolution photographic memories, which he has gradually shown in some exhibitions, including “Revealing hidden beauty”, from 2015. “Today I use a smaller camera. However, I spend more time preparing the environment because of the lighting. I also try to improvise equipment, coming up with alternatives. It gives me a lot of pleasure,” he reveals.
But what is it like to live with Parkinson's? Professor Shepherd explains that he maintains a systematic routine of activities during the week, which involves hydrotherapy, pilates and physiotherapy sessions. He also periodically attends Unicamp's HC. The most difficult thing, he reports, is accepting the disease. “Every patient goes through this, as it is an incurable, progressive disease that brings discomfort. That’s not a very happy prospect,” he explains.
On the other hand, he has tried to “live well” with the disease. “There’s no point staying at home moping. This only brings miserable feelings and affects the lives of those who care for us. I decided that I have to maximize what I can do, and not complain about what I can’t.”
However, George recognizes that Parkinson's patients still face several barriers. One is the intake of medications with intense side effects. The other is the difficulty of obtaining medicines when they are out of stock at the high-cost pharmacy and health center. “I take medication every three hours, which costs no less than R$1.500,00 per month. The doubt as to whether there will be medicine on the public network creates a lot of uncertainty for the patient, who often has to bear the costs.”
Pathology
Parkinson's is a pathology with neurological, chronic and progressive causes, resulting from the degeneration of cells in the region of the brain known as the substantia nigra, responsible for the production of dopamine, a neurotransmitter that, among other functions, controls body movements. Currently, there are around 200 cases of this disease in the country.
The cause of cell wear is still unknown, however it causes functional changes in structures located deep in the brain that are involved in the control of movements, resulting in tremors, rigidity, bradykinesia (slow movement) and changes in balance. These dysfunctions appear when walking, balancing, swallowing, writing and even speaking.
George comments that fortunately he no longer suffers strong tremors. “In the beginning, they were frequent and many people demanded some attitude from me and my family”, he remembers.
Parkinson's patients, he says, are very exposed and vulnerable with the disease, since the pathology affects them socially and is stigmatizing. A few years ago, he took a trip to Hamburg, Germany. One day he woke up with uncoordinated involuntary movements (dyskinesia). "I went to the restaurant for lunch. I was shaking so much that I could barely eat. I ended up attracting so many looks that I felt embarrassed. I suspected that symptom and its relationship with the drug levodopa. I reduced the dose and got better", he reports. "There is a lot of intolerance towards the patient of Parkinson’s in contemporary society”, he realizes.
The professor gives advice to those who have just been diagnosed with the disease: “Don’t despair. This is not a death sentence. There is life post-diagnosis. With proper medication, the outlook is much better than it used to be. It is possible to maintain a reasonably active and quality life.”
On the other hand, he emphasizes that, if there is anything he has learned about Parkinson's, it is that each case is different. “People react differently and must understand the variation in medication use and what this can mean.”
According to George, his daily struggle is to stay active. And he can do most activities on his own, despite limitations. “This disease has affected my physique more. Intellectual activity still continues. I’ve been doing research with alumni.”
The botanist retired from Unicamp in 2013. But, when he remembers his work, he gains a new soul. He says that one of his best expeditions was to the municipality of Serra Fina, between Queluz and Passa Quatro. “It is a difficult area to access. It took us two days to reach the top of the mountain (Pedra da Mina), the fourth highest peak in the country and the highest in Serra da Mantiqueira, and we collected plants. We discovered three completely new species,” he reveals. His mentee worked there for two years and collected eight new species. Read text published on Journal of Unicamp.
The findings are documented in the project Phanerogamic Flora of the State of São Paulo, originally organized by IB professor Hermógenes Leitão. This work brought together around 200 researchers in the field of Botany and, together, they produced a kind of catalog of the State's plants. This project generated eight of the 15 volumes still to be published.
Care
Simone LK Shepherd, George's wife and also a retired IB professor at Unicamp, believes that the family plays a fundamental role in the care of Parkinson's patients. “At the Association, we see many reports of abandonment when it is discovered that the person has the disease”, she laments.
She points out that the family needs to be aware of the different signs of the disease as soon as they appear. The person with this pathology becomes inflexible. Another aspect that draws attention to is the difficulty in reaching a diagnosis. As a result, the person takes a long time to start treatment, and their suffering can become even greater.
Last year, George underwent Deep Brain Stimulation (DBS) surgery, in which electrodes are used to send electrical impulses to a specific brain region to reduce symptoms. This is the treatment of choice when the medication is no longer efficient and is causing harm to the patient. Now, he feels better.
According to the collaborating professor of the Department of Neurology at Unicamp Laura Silveira, after diagnosis by a qualified doctor, it is very useful to seek information about Parkinson's and make joint decisions with the doctor. "This disease not only affects mobility, but also has many other symptoms. Well-informed patients and family members are able to raise very useful questions and observations during the clinical consultation", she emphasizes.
Medication alternatives have not changed so drastically in recent years, reports Laura Silveira, but there has been an improvement in surgical indications, which may be an option for specific cases. The most important thing is that, in the last decade, there has been an appreciation for multidisciplinary treatment and the maintenance of a healthy lifestyle, which includes regular physical exercise, good nutrition and, above all, a stimulating and welcoming psychological environment.
"Both my grandmother's sister and brother suffered from the disease. I remember well my great-aunt, a very dear person, who received treatment that was far below what was available at the time. Sometimes I wanted to turn back time, However, I found a solution trying to help other sufferers, both those who are my patients and those of the Association, or others who are still without proper assistance today", emphasizes the doctor, who is one of the biggest supporters of the Campinas Parkinson Association.
The patient's main perspective, from a medical point of view, is that Parkinson's is no longer a terminal diagnosis, as it was, but a call to action. "We have numerous resources to mitigate the symptoms of the disease and we know that many patients lead happy and satisfying lives, despite the setbacks imposed by the condition", he explains. "Our main task is to integrate medication care with multidisciplinary monitoring and always help educate sufferers and caregivers about the disease. This way, we can overcome the challenges along the way together."
In his opinion, there are numerous advantages to joining groups like this. One of them is to receive verified information, as all carrier associations count on the collaboration of several qualified professionals who have a particular interest in studying and treating Parkinson's. This Association has the collaboration of several professionals, including doctors from Unicamp itself. In addition, it provides multidisciplinary counseling and teaches regular classes on the role of nursing, physiotherapy, speech therapy, occupational therapy and psychology in treating the disease. Furthermore: it provides a welcoming environment to share experiences, advice and face prejudice, which still occurs and affects many sufferers.
Discover some photographs of Shepherd.
