April is Parkinson's Awareness Month. It's a time to increase public awareness about a disease that detrimentally affects the lives of 1.5-2 percent of the population over the age of 60. A time to inspire the action required to provide support for those suffering with this illness as well as help to speed progress towards finding that elusive cure. A time to take action against a disease that those of us that have been diagnosed with this illness will face long after the end of this calendar month. How can you help?
(1) Reach out to someone with Parkinson's. If you know someone in your family, social circle or community with Parkinson's, consider reaching out to them. This can be a very isolating disease -- both physically and emotionally. It can be very stressful facing a progressive neurodegenerative disease for which at this time there is no cure. Your offer of support may make a significant difference. Something as simple as helping out with groceries, offering a drive to a medical appointment, accompanying them on a walk or assisting with childcare or housework can fulfill a real need. Likewise emotional support can be invaluable. Take your cues from the person affected -- do they want to talk about how Parkinson's disease is making them feel, or would they rather be distracted by your conversation? Keep in mind that sometimes decreased facial expression is a symptom of Parkinson's. Don't mistake this for disinterest or even more erroneous, a lack of understanding -- cognitive issues affect only a very small percentage of people with Parkinson's disease.
(2) Educate yourself and others. This disease is not limited to the tremor that mostly defines the general public's understanding of the disease. What is less known is the pervasiveness of Parkinson's, how it causes everything from mood disorder such as depression and anxiety, dementia, urinary incontinence, constipation, swallowing difficulties, pain and sleep disorders to name but a few. These symptoms, many of which are difficult to treat, contribute to poor quality of life. And although there are some medications available to treat some of the motor symptoms of this disease such as tremor and stiffness, there is a very fine line between treatment and debilitating side effects making managing Parkinson's symptoms very difficult. Learning about the disease and how it affects those that live with the daily challenges will help change people's perceptions and may lend public support for the urgency that the Parkinson's community has with regards to the search for better treatments and a cure.
(3) Raise money for research. Consider supporting fundraising events for Parkinson's disease or raise money on your own accord. It takes a significant amount of money for a drug to make it from the lab to the pharmacy shelf. Government funding is inadequate for in this process which in turn hinders research into potentially viable treatments. It will take a significant amount of money and fundraising support to move research into this disease forward towards its ultimate cure.
(4) Participate in clinical trials. A recent report published in the Journal of the American Medical Association looked at 1,000 clinical trials. Of those, approximately 25 percent were never completed. Lack of patient participation was the most frequent cause. This study confirmed what previous surveys had already concluded -- clinical trial participation is a major issue. And without this type of involvement, drugs or interventions that may potentially have great benefits will never have a chance to be studied. You don't have to have Parkinson's disease in order to participate in clinical trials. Most also require controls or individuals without Parkinson's to act as a comparison group. Without healthy volunteers, research cannot progress. In Canada, Health Canada's Clinical Trial Database is a source of information for Canadian clinical studies that involve human pharmaceutical and biological drugs. In the U.S., this type of information can be accessed via The U.S. National Institutes of Health and specific to Parkinson's Disease, the most comprehensive database at which you can register to receive information about appropriate trials, is Fox Trial Finder.
Public campaigns promoting April as Parkinson's Awareness Month are an effective reminder of the struggle that millions of people worldwide face everyday. And if even a few people that learn from this outreach are able to channel that empathy into definitive action, the burden of this disease may be alleviated for some and the search for better treatments and a cure may become a tangible reality. Together we can make a difference.
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