How To Live With Parkinson’s Disease

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“The first thing that I noticed was a tremble in my right hand – not often but every once in a while” says Tom Bruyere. “I wasn’t concerned until other symptoms started. When I finally saw a neurologist in 1998, I was diagnosed with Parkinson’s Disease.”

Like Tom, over 1.5 million Americans suffer from Parkinson’s Disease, a progressive neurological condition that is second only to Alzheimer’s Disease in prevalence. Parkinson’s Disease is characterized by tremor, rigidity, slow movement, and trouble with balance. “Most patients first notice difficulties with fine motor skills which are affected by tremor and slow movement,” says Dr. Kevin Biglan, a neurologist and Movement Disorder Specialist at Johns Hopkins University in Baltimore, Maryland. “These include activities such as buttoning buttons, washing hair, and eating.”

Celia Bassich, an Assistant Professor at Towson University, says speech and swallowing can also be affected. “The first voice change usually involves talking in a much softer voice than is typical of conversational speaking. However, the person with Parkinson’s feels that he or she is talking at a normal loudness level.” Says Bruyere, “I recognized that I was slowing down even before I actually knew that it was Parkinson’s. My symptoms were life-changing and continue to be.”

Parkinson’s Disease was first discovered by James Parkinson in 1817 and was chronicled in his early work “Essay on the Shaking Palsy.” It is a neurological disorder characterized by the loss of dopamine-producing cells in the brain. When about 50% of these cells disappear, patients start to experience symptoms such as tremor and slow movement. The theory behind the cause of Parkinson’s Disease is still unknown, although several studies suggest exposure to chemicals in the environment and genetic mutations may both play a role. “There are several genetic and environmental factors that may predispose a person to develop Parkinson’s Disease,” says Dr. Ted Dawson, director of the Parkinsons’s Disease and Movement Center at Johns Hopkins. “In addition, specific chemicals used in the agricultural industry have caused Parkinson-like symptoms to occur in animal models.”

Although Parkinson’s Disease eventually becomes debilitating in its more advanced stages, medications are available to help patients with movement. Levodopa (pronounced lee-vo-do-pa), a chemical that has been in existence since the 1960s is still considered the “gold standard” for Parkinson’s patients, and is perhaps the most widely prescribed medication for the disease. In addition, Deep Brain Stimulation surgery has been shown to be very effective in eliminating several of the symptoms of this disease. For most people with Parkinson’s, a comprehensive approach to therapy is the best way to treat the effects of the disease. Says Biglan, “People should see a Movement Disorder Specialist as soon as possible to help them with the primary symptoms and medications of the disease. We can then refer them to other specialties – such as speech pathology, occupational therapy, and physical therapy – as the need arises.”

Tom Bruyere sees hope for many people with Parkinson’s Disease. He has participated in several clinical research studies for new medications and is on constant watch for new therapies. “I am enthusiastic about some of the new treatments and the research that is going on.” He also participates in area support groups and recognizes the need for patients and caregivers to constantly increase their knowledge about Parkinson’s. “I think there is reluctance on some people’s parts to go to support groups, but once they attend, they learn that they dramatically increase your education. They help people at all levels.”

In searching for a cure for Parkinson’s Disease, Dr. Dawson thinks that research is moving in the right direction to find a cure within the next few years. “The advances that we are making in research are very promising for patients with this disease. New treatments are regularly being developed, and it is only a matter of time before a significant breakthrough surfaces.”

As for Bruyere and his wife, Kathy, they are expecting to make a move of their own in the near future to be closer to their children and grandchildren. “I have hope in research but until they cure this disease, we’ll keep pressing on.”

For more information, contact the Johns Hopkins Parkinson’s Disease and Movement Disorder Center (410-955-8795; www.hopkinspdmd.org), the National Parkinson Foundation (1-800-327-4545;www.parkinson.org), or the Parkinson Foundation of the National Capital Area (703-891-0821; www.parkinsonfoundation.org).

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