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If you or a family member is living with Parkinson’s disease, you’re already aware of the impact the condition can have on your life. But chances are, other people in your orbit don’t know as much as they could about the disease. That’s one reason Parkinson’s awareness matters, especially in April, which is Parkinson’s Awareness Month.
It can be tough when your friends and family don’t know what you’re going through. It can also feel hard to say no to loved ones who don’t understand your situation because you might worry about how your relationships will be affected.
Raising awareness about Parkinson’s disease can help friends, family members, and caregivers better understand how to support you. It can also help challenge stereotypes about Parkinson’s, including the idea that it only causes tremors or affects everyone the same way.
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“Are any of you doing something special to raise awareness of Parkinson’s? I would love to read about your ideas,” wrote one MyParkinsonsTeam member.
Before you can create public awareness by sharing information with others, it’s a good idea to understand the specifics of Parkinson’s disease.
Parkinson’s disease is a progressive disorder that affects dopamine-producing neurons in the brain. Symptoms usually develop slowly, and how they change over time can differ from person to person.
Parkinsonism is not one specific disease. It’s a term for symptoms often linked with Parkinson’s, such as resting tremor, slowness of movement, muscle stiffness or rigidity, and changes in gait or balance. Parkinson’s disease represents 85 percent to 90 percent of all parkinsonism cases.
Other types of parkinsonism include drug-induced parkinsonism, multiple system atrophy, progressive supranuclear palsy, vascular parkinsonism, Lewy body dementia, and corticobasal degeneration.
Parkinson’s can be treated, but there is no cure. Treatment options may include medications, lifestyle adjustments, exercise, rehabilitation therapy, and, in some cases, surgery. Symptoms vary among people with Parkinson’s disease, but movement symptoms and cognitive changes can both occur.
Parkinson’s usually progresses gradually, although how quickly symptoms change varies in each person. Most people with Parkinson’s have a life expectancy close to that of people without the condition. Still, as Parkinson’s disease advances, problems related to symptoms — including falls and other complications — can have a significant effect on overall health.
After you’re armed with information about Parkinson’s disease, you can share it with others.
Social media is the fastest and least expensive way to do this kind of advocacy. You can post information about Parkinson’s, share details about the condition, and join communities of other people who are also working to raise Parkinson’s disease awareness.
To help your messages reach people interested in Parkinson’s awareness, consider using an appropriate Parkinson’s-related hashtag, such as #ParkinsonsAwareness. This way, others can more easily find, share, and comment on your posts.
Social media helps raise awareness of the condition and helps people with Parkinson’s realize they aren’t alone. Joining a Parkinson’s disease community on social media, such as MyParkinsonsTeam, can also help you connect with others.
You can share resources such as the Parkinson’s Foundation’s Find Real Answers Quiz, which is designed to test Parkinson’s knowledge, share facts, and connect people to information about Parkinson’s. You can also check out the foundation’s Substantial Matters podcast and awareness events.
You might also share articles that show different sides of life with Parkinson’s. For example, stories about famous people with Parkinson’s disease can show how public figures help raise awareness. Articles about Parkinson’s in movies and TV can help explain why accurate representation matters.
Volunteering is another option. Parkinson’s Foundation volunteers may help with local events, educational programs, fundraising initiatives, or community outreach. If you’re able, you can also donate or encourage others to donate to the Parkinson’s Foundation or The Michael J. Fox Foundation to support Parkinson’s disease advocacy and research.
In addition, remember to engage in self-care. Educating others about your experiences is emotionally taxing, so know your limits and know when to put your mental well-being first. If you’re a care partner, you may also find it helpful to read about self-care for Parkinson’s caregivers.
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Find a Movement Specialist(a neurologist who specializes in PD) about haveing a DBS or Deep Brain Stimulator
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