Within the next nine minutes, someone will receive a new diagnosis of Parkinson’s disease. In the time it takes you to finish this article, one more life will have forever been changed.
It could be that this life belongs to someone already in your care, or to an individual you’re soon to meet. But more than likely, it will belong to neither—the life of someone you’ll never be aware of, except in your knowledge of what this past month meant. Perhaps he’s an aging, heartland farmer who wouldn’t give up his tractor for all the soybeans in McLean County, or a 20-something bride-to-be who never knew the white of a wedding dress could be trimmed with early onset uncertainty: grey, the color of the Parkinson’s awareness ribbon.
April was Parkinson’s Awareness Month, and by the time it came to a close, nearly 5,000 more Americans learned that they had PD. That adds up to an estimated 50,000 to 60,000 new diagnoses every year, each joining the already 1,000,000 individuals affected in the United States, and the nearly 10,000,000 persons worldwide.
April was Parkinson’s Awareness Month, but for the individuals living with the disease on a daily basis, so is every month. So as we move into May, and June, and on into next year, we’d like to reflect on this vital call to action, and the unique role caregivers and nurses can play on the front-lines of awareness.
Currently, there is no known way to halt or reverse the effects of this neurological disease, although there are medications individuals can take to manage their symptoms. Part of the problem is that scientists still aren’t sure what causes PD. The lack of answers providing a direction only makes targeting the disease more difficult, and therefore more expensive.
Thus, the main intent of Parkinson’s awareness is to foster a sense of public urgency. With an increase of attention, comes an increase in those providing money that researchers can draw upon in their push towards a cure.
In an effort to raise the public profile of PD, the United States Congress designated April as Parkinson’s Disease Awareness Month in 2010. Since then, what was once just a national campaign has grown into a multi-national mission each year, with a push for awareness in Canada, too, and throughout the rest of the world.
But Parkinson’s Awareness Month isn’t solely about driving fundraising efforts. It’s also about raising the overall public understanding of the disease.
Though many people have at least heard of PD, few know just how prevalent it is. Parkinson’s disease is the 14th leading cause of death in the United States, according to the Center for Disease Control, and more people currently live with it than those with multiple sclerosis, muscular dystrophy, and ALS combined.
What’s worse, though, is that ever fewer would know the symptoms of PD well recognize it in a family member, their friends, or even themselves. But you can help change that.
As caregivers and nurses, we are afforded the unique opportunity of interacting with dozens of persons in assisted living each day, as well as their family members and friends. In a sense, as we care for these individuals, we also help to provide care and peace of mind to anyone in his or her orbit. Though we may not yet have a cure at hand, what we do have at our disposal is knowledge, and an ability to educate anyone with an open ear. Our experiences on the floors of hospitals and assisted living facilities provide a unique point of view within the discussion of Parkinson’s disease.
But our voices shouldn’t just be adding to the conversation; they should be starting them. If we take up the secondary mantle of teacher, we can raise the flag of awareness to previously unseen heights. We know how Parkinson’s disease manifests, and what the common (and uncommon) symptoms are. In the battle for a cure, we can arm those around us with knowledge, and a newfound ability to recognize the beginning stages of Parkinson’s in their friends, their families.
Care doesn’t always take the form of one-on-one treatment. In the form of awareness, like a pebble in a lake, it will ripple outward to serve the greater whole.
Let it start with you.
For additional reading about Parkinson’s disease, check out our special feature about Michael J. Fox and PD from February!