April is Parkinson’s Awareness Month! This month we are shining a spotlight on all things advocacy, both on a policy and a personal level.
What It Means to Advocate for Parkinson’s Policies
Simply put, our representatives may not know the importance of Parkinson’s research unless they are told about it.
Whether you have been diagnosed with Parkinson’s disease or know someone who has, your unique experience with Parkinson’s tells a story that may compel our leadership to action.
Supporting Parkinson’s on a State and Federal level is paramount to ensuring access to care and treatments, securing funds for new medications and devices, and encouraging ongoing research for a cure.
Fortunately, there are a number of existing PD policies in play that you can actively support starting today.
How to Advocate for Parkinson’s Policies
Support the National Plan to End Parkinson’s
The National Plan to End Parkinson’s is a bipartisan bill that introduces a national, focused strategy to prevent PD, find a cure, and ensure those diagnosed have access to healthcare. It is the first ever legislation that is solely dedicated to ending PD.
The bill will be reintroduced to Congress in July 2023 and has garnered significant support, but the hard work isn’t done yet! Urge your Senators to co-sponsor the bill by sending in this pre-written email courtesy of the Michael J. Fox Foundation.
Support the Ban on Paraquat
Paraquat is a weedkiller that is banned in the EU, UK, China, and Switzerland and has been linked to Parksinon’s disease through multiple scientific studies. One study found that exposure at a young age increased a person’s likelihood of developing PD up to 500% depending on the level of exposure.
Senator Cory Booker has introduced a bill to reduce toxic chemicals, including paraquat. A national ban could be monumental in prevention of PD and reduction of diagnoses in the future.
Contact your lawmaker today and urge them to ban this harmful chemical.
Share Your Story
With millions of people active on social media, this is a perfect outlet for sharing your or a loved one’s experience with PD. By bringing visibility to Parkinson’s, you help to enlighten the newly diagnosed and the general public.
Break common misconceptions, share helpful guides, and voice your support. Even the smallest actions can inspire someone else to step up and support these policies.
How to Advocate for Yourself
No matter what stage of your PD journey you’re in, communicating your feelings and needs is key to improving your life. Self-advocacy involves understanding your needs, communicating them to others, and taking steps to have them met.
Advocating for Yourself in Healthcare
When it comes to your healthcare team, remember that they are just that — a team. Between your neurologist, speech therapist, occupational therapist, and urologist, you should feel they are working with you to meet your needs.
Practice transparency with your doctors to ensure your symptoms are being treated in the best way possible. This includes:
- tracking your symptoms
- being proactive about setting your appointments
- preparing a list of questions to address during your visits
- seeking a second opinion when something just doesn’t feel right or isn’t working
The non-profit Compassion & Choices offers a number of online resources, including worksheets that you can complete and take to your doctor. The “Tools to Finish Strong” toolkit focuses on end-of-life care but is applicable to all stages of PD. Here you can map out your healthcare preferences and ensure that your wishes are honored by your medical team.
Self-advocacy doesn’t come easily for everyone. Minority groups may find they need to work harder to make their voices heard due to implicit biases. If you feel like you aren’t being taken seriously or given sufficient care, search for a new healthcare provider. You deserve fair and caring treatment!
Advocating for Yourself with Family, Friends, and Colleagues
We recognize that everyone has different comfort levels when it comes to sharing their PD diagnosis. Processing your own diagnosis is critical in understanding what it means to you, and how you’ll approach sharing it with others.
Set yourself up for success by talking to your doctor and/or reaching out to others with Parkinson’s. Your PD network can help you determine what information you are comfortable sharing, how you’ll share it, and prepare your own list of answers to potential questions in advance.
If you are up for sharing with your workplace, there are a few steps to bridge the gap with your colleagues.
First, be prepared to educate people about Parkinson’s and the associated language. Some people may not have a clear understanding of what PD is or have preconceived notions that don’t necessarily apply to your diagnosis.
Additionally, be frank about your symptoms with your colleagues. This way, people are aware when you are symptomatic and don’t misconstrue your actions or behaviors.
With Friends & Family
Your friends may not be in the loop on your treatment and care. Consider educating them so that they are aware of what Parkinson’s looks like to you.
Get your community and care partners involved by offering to do a presentation, sharing educational links, inviting them to Parkinson’s focused events, or participating in peer-to-peer fundraising. Parkinson’s Awareness Month is a perfect time to share your experience and pull back the curtain on your own diagnosis.
And oftentimes, friends and family are eager to help but don’t know how. While it may feel difficult to practice vulnerability, being receptive to assistance is a key way to respect yourself and your body.
Give your friends and family specific ideas for how they can help you. For example, if you have difficulty taking your trash to the curb, let a loved one know that this is one way that they can be of assistance.
Communicating your needs isn’t always easy, but allowing your friends and family to be more intimately involved in your treatment is a perfect way to practice self-love and build a relationship with a care partner.
Going out in public can be a nerve-wracking experience and you may fear your symptoms will be misunderstood.
One way to covertly communicate your diagnosis is by wearing a medical alert bracelet/necklace or keeping an ID card on you. This signals to people that you have a diagnosis and ensures that slurring, tremors, or other symptoms are not taken out of context. Additionally, utilizing health apps on your phone is an efficient way to communicate your diagnosis, especially in an emergency situation.
The Parkinson’s Foundation’s “Aware in Care” hospital safety kits include critical tools and information to assist you in an emergency situation. The kits include a number of helpful documents including a hospital action plan, medical alert card, and medication form. Carrying a hospital safety kit on you at all times ensures that you’ll receive the necessary and correct care no matter where you are.
Knowledge is Power
When it comes to advocacy, the underlying theme is education – educating our leadership, friends and family, and the general public.
This Parkinson’s Awareness Month, practice your power by sharing information in whatever way feels most comfortable to you. This can be as simple as writing a letter to your senator or sharing information on social media, or as complex as kickstarting your own fundraiser.
However advocacy manifests for you, know that PCLA is in your corner. Check out our full list of resources and be sure to share our donation page today to help raise $3000 for Parkinson’s Awareness Month!