April is Parkinson’s Awareness Month, and because of that, many of the Parkinson’s programs in Minnesota are offering seminars or classes about the disease for people with Parkinson’s disease and their families. Several of these programs are listed in the “events” section of this website.
Seminars led by health professionals are fine and well, and they will help people new to the disease, or people new to their stage of the disease, to understand their symptoms a little better, and to know what kinds of treatments are available. But I think there is a different kind of awareness, perhaps even more important, one that YOU can help with. Think about it—your doctors and their care team can help you to understand what is happening to you, how the Parkinson’s is affecting you, what treatments would be best for you, and what problems to look for in the future.
But only you can tell other people what it is REALLY like to have Parkinson’s disease, how it is to live with the disease every day, and what they can do to help you—or to help the next person they meet who has the same diagnosis.
You are in contact every day with coworkers, neighbors, friends and relatives. Get an extra copy of an NPF brochure to give to the nosy neighbor who is always asking questions. Give your friends the address of the NPF website, so they can get accurate information about the disease. If you think that your neurologist has helped you, pass on the name to your coworker to give to his mother or aunt who was just diagnosed and is afraid. If you freeze up sometimes as you walk, teach the people around you how to help you! Remember, there was a time when you had no idea what “freezing of gait” meant. But now you do. They still don’t, though, and so you will need to tell them what helps to get you unstuck (hint: sometimes pushing you, or pulling you, is NOT the helpful thing to do; sometimes, what you need most, is time and patience. Tell them that!).
The annual Walk for Parkinson’s, called “Moving Day”, is coming up on May 4. I hope—and expect—to see all of you there, and I have spoken to the WeatherGods and promise that the snow will have melted by then. Bring your family, bring your coworkers, bring your church group. Print up some t-shirts for your group, as many participants did last year: “Gregger’s Leggers”, “Grannie’s Groupies”, whatever. Wear silly hats. This is a wonderful event that goes a long way to dispelling people’s misconceptions about Parkinson’s disease. People with Parkinson’s disease are young and old, male and female, and believe it or not, they can also be healthy and fit! Prove it to the world—dust off the cobwebs, call a friend, and come to the Walk.
Make the commitment to tell SOMEBODY about Parkinson’s this month. Only by connecting with each other, by inviting each other to share our stories and to learn about the disease, can we hope to harness all the strength and energy that is out there, and focus them on solving the problems of Parkinson’s disease, both big and small. Some people have money to support research. Some have novel ideas. Some have compassion. And others might just have the practical skills that can help a person get through the day more easily. We need them all!