Parkinson's disease: Need to know

20141221-Muhammad-ali
Boxing great Muhammad Ali has struggled with Parkinson's. He's not the only one.

Do you know the signs of Parkinson's disease? You need to–we all need to, and we must spread the word–so that people in every community are diagnosed earlier and receive the best treatment. Only then will outcomes improve for all Parkinson's patients.

Parkinson's disease involves the death of nerve cells in the brain that produce dopamine, a chemical that sends messages to the parts of the brain that control movement. As the disease progresses, the amount of dopamine produced in the brain decreases, leaving perople unable to control their movements normally. But some have suggested that the condition begins outside the brain, causing early, non-motor symptoms such as constipation, sleep issues or problems with the sense of smell. It is chronic and progressive, meaning that symptoms continue and worsen over time. There is no cure. It is estimated that over one million people in the United States have Parkinson's disease.

There are significant disparities in stage of diagnosis and care of Parkinson’s patients. African Americans historically have been underdiagnosed, and diagnosed further along in the disease process. This means that they may not be getting the help they need to live as fully as possible with the disease. Why is there “less” of it in African-American communities? Recent research points to health disparities that are not related to biology or clinical need, but are the result of a history of discrimination.

This history–combined with the difficulty in diagnosing it and lack of a definitive test–have led researchers at the University of Pennsylvania to take on the challenge of spreading the word to African-Americans and their general practitioners in Philadelphia. They need to know that what some consider “normal aging” may in fact be the earliest manifestations of the disease. Alternatively, people with a basic understanding of Parkinson's still need to know that it is not simply a motor disorder, and often the seemingly unrelated symptoms are the earliest to appear.

Here are the 10 early warning signs of Parkinson’s disease:

  1. Tremor or shaking
  2. Small handwriting
  3. Loss of the sense of smell
  4. Trouble sleeping
  5. Difficulty moving or walking
  6. Constipation
  7. A soft or low voice
  8. A masked face (reduced facial expression)
  9. Dizziness or fainting
  10. Stooping or hunching over

By themselves, these symptoms could mean many things, or nothing at all. If you have several, however, talk to your doctor about the possibility of Parkinson’s disease.

For those living with the disease, there is reason for hope. Research is advancing our understanding of potential causes, the search for a cure, and the development of medications and programs to improve quality of life. Philadelphia has some of the best Parkinson's doctors, as well as unique programs to help patients through boxing, dancing, singing, biking, and nutrition. There are support groups where people with the disease and those who help care for them can meet others with the diagnosis, share resources, and realize they are not alone. Penn's Parkinson’s Disease and Movement Disorders Center, where one of this post's authors (Jacqueline Rick) works, is among the world’s best for Parkinson's care, outreach, support and research. And the Philadelphia VA Medical Center is one of just six designated Parkinson's Disease Research Education and Clinical Center facilities, offering cutting edge care to veterans.

It is possible to live a full life with Parkinson’s. But first you have to know about it. The public struggles of celebrities like Michael J. Fox and Muhammad Ali have helped bring attention to the disease. The following organizations have lots of additional information. Or you can call Yuliis Bell, outreach coordinator at the University of Pennsylvania center, at 215-829-5078.

Resources


Christina Robertson, PhD, is a research advocate and care-partner to someone with Parkinson's. Jacqueline Rick, PhD, is research project manager at the University of Pennsylvania’s Udall Center for Excellence in Parkinson’s Disease Research.


Read more about The Public's Health.