It’s April, and we’re halfway through Parkinson’s Awareness Month, an effort designed to focus on education about the disease. There are still regions of the world where Parkinson’s isn’t yet understood. And there aren’t words to describe the disease in some distant corners of the Earth, which makes facing it incredibly scary.
But even in cultures that are beginning to label Parkinson’s disease and its symptoms, a lot of fear and judgment is associated with the disease. Not only does Parkinson’s wreak havoc on the body, it also has tremendous social repercussions. It is relatively common for people with Parkinson’s to withdraw from social circles, hiding the illness from friends and family.
A tremendous stigma surrounds the disease because of misinformation or a lack of information. Providing access to facts reduces the stigma that is associated with having an illness. By supporting education and more conversations, we can better shed some light on the disease.
My dad’s experience
When my dad was initially diagnosed with Parkinson’s, it seemed that a lot of shame revolved around the diagnosis. The fear and unpredictability of the disease cause many patients to withdraw from their standard social circles. And Dad wasn’t immune to this reaction. Rather than getting gawked at in social places, he found it easier to stay a little withdrawn.
But in recent years, he has begun reaching out to local Parkinson’s communities. As he grows accustomed to the constant changes that he faces, it seems to be getting easier to find peace in social places.
By creating Parkinson’s Awareness Month, many organizations hope to reduce the stigma that surrounds Parkinson’s. There are plenty of ways to participate in this mission.
This year, the site Awareness Days is encouraging us to #StartAConversation to educate and inspire. By opening up our discussions to make space for the topic of Parkinson’s disease, we’re creating a platform with which we can better understand the Parkinson’s experience. Sharing our thoughts often helps to bridge gaps, particularly among those we love.
Read other Parkinson’s stories
Parkinson’s News Today is featuring a handful of people in the Parkinson’s community to show what a journey through the disease is like. We’ve asked some inspiring people to talk about their journeys with Parkinson’s and as caregivers. These stories will be released periodically throughout the month of April. Follow along @parkinsonsnews on Instagram to see them.
If you love to see tangible effects of your efforts, fundraising might offer an outlet for channeling your creativity. If you are truly passionate about creating change in the world of Parkinson’s, you might have a knack for fundraising. You can help to lead the way with a DIY fundraiser or a birthday fundraiser, for example. Or you can participate in someone else’s fundraiser.
Find tips and tricks
The Parkinson’s Foundation created a calendar for Parkinson’s Awareness Month where you can find tips, inspiration, and challenges to participate in. The calendar discusses themes such as stress, cognitive challenges, and more. Each day features a different topic or challenge.
Throughout the month, four singalong events are scheduled and presented virtually by the World Parkinson Coalition. These events are intended to bring us together to combat Parkinson’s. Since many lose strength in their voices as the disease progresses, singing can offer a wonderful way to slow this process. But singing also creates a community in which its participants support one another.
One of the greatest challenges associated with Parkinson’s disease is that we know so little about it. Researchers are working hard to find ways to manage or slow the disease’s progression. But another challenge that we must overcome as patients and caregivers is handling the stigmatization. We tend to stigmatize things that we don’t understand. By participating in Parkinson’s Awareness Month, we just might be able to shed some light on the disease, making it less stigmatized.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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