Name: Juan Sidoti
Juan and Sarah Sidoti, 2004
Parkinson's disease affects more than just the patient.
Sarah and Juan Sidoti have been married for many years and have one daughter. Juan, a naval pilot for the Argentine Navy (1952-1980) was diagnosed with Parkinson's Disease 15 years ago. The first symptom was an unexplained depression that came over him. One year later, a slight tremor emerged, and a Parkinson's diagnosis soon followed.
Juan says that one of the hardest things to deal with about Parkinson's is the strict schedule that you must maintain. You have pills that must be taken morning, noon and night. If you forget to take your pills, you will soon feel the brutal effects of the disease. Juan recounted how he will sometimes lose track the time when he is working on the computer, where he is writing about his history as an aviator. He will stiffly get up from the computer, walk into his room, and realize he is three hours off his medication schedule.
Juan, one of the luckier Parkinson's victims, is not alone in his fight. It is important to remember the disease does not only affect one person, it affects the victim's family and friends. Juan's wife, Sarah, now one of the most outspoken Parkinson's activists in Argentina, has been a fierce commander in their battle against Parkinson's disease; in fact, next week she is off to Amsterdam to attend a World Parkinson's Disease Association meeting.
Together Juan and Sarah have adjusted their lives to Parkinson's. They started an organization called ACEPAR (Association Civil Enfermedad de Parkinson) to bring people together in the fight against Parkinson's. They realized that no lone person can conquer this disease, and they also realized the public needs to learn more about the disease.
With the help of Juan's doctor and some referrals, they began the group in 1996. Starting with just ten people, now they have grown to include a mailing list of more than 1,000 people throughout Argentina. Juan recalls the first meeting. "We really didn't know how it would go. At first, everyone just kind of looked at each other, but once we got started, conversation just flowed."
Nearly ten years later, they are still going strong. It is amazing to see these two fighting together. When I was there, Sarah was just back from the TV station taping a bit about Parkinson's. Juan and Sarah are working hard to improve relationships between Parkinson's sufferers and their families by putting on events called "Dancing with Parkinson's." They try and create forums for people to talk about the disease, thereby improving relationships with family, friends and even doctors. Sarah challenges the public to learn about the disease, because an improved public understanding of the disease will make life much easier for people with Parkinson's.