Advocacy for Parkinson's

Advocacy plays a pivotal role in driving change and delivering essential support for individuals with Parkinson's and their caregivers. An advocate, by definition, is someone who openly champions or supports a particular cause or policy. Advocacy encompasses a range of efforts aiming to influence various facets of society, ensuring a comprehensive approach to address the needs of those affected. Beyond supporting individuals affected by the disease, it also seeks to transform larger systems, policies, and procedures that impact their lives (Fight Parkinson’s, n.d.).

Types of Advocacies

Systemic Advocacy

Advocacy operates across different levels, involving systemic, group, and individual efforts, all working toward distinct yet interconnected goals (Fight Parkinson’s, n.d.). Systemic advocacy strives to influence and reform structural elements that may impede access to quality healthcare, and support services, or hinder societal understanding among individuals affected by Parkinson's disease. It seeks to change government systems, such as laws, policies, representation, and spending, necessitating networking and alliances with decision-makers. This type of advocacy often involves direct communication with policymakers and authorities at municipal, provincial, or federal levels (Hanson, 2022c).

Parkinson Society BC is actively involved in systemic advocacy, exemplified through various campaigns. One notable initiative was our effort to improve access to Duodopa. Our advocacy efforts also extended to enhancing accessibility to Deep Brain Stimulation (DBS) surgery. We have successfully advocated for the doubling of the number of surgeries and the recent recruitment of a second DBS neurosurgeon. As well, we established funding partnerships with Interior, Island, and Vancouver Coastal Health Authorities to facilitate team-based care for individuals with Parkinson's.

Currently, we are working on a second funding partnership with Island Health Authority. This initiative aims to provide a speech pathologist for Nanaimo and Central Island. We are also working to establish a visiting clinic for the Northern Health Authority, addressing a critical need in this area. Through these strategic partnerships and ongoing efforts, Parkinson Society BC continues to advocate for reducing systemic barriers to comprehensive care for individuals affected by Parkinson's disease.

Self-advocacy

Self-advocacy is often the initial experience of advocacy for an individual with Parkinson’s. It focuses on empowering those living with Parkinson’s, along with their families and caregivers, by cultivating essential skills and self-confidence to express their needs and challenges (Hanson, 2022a). This personal development enables individuals to effectively represent their own interests within their communities. This can be through the form of tracking and sharing symptoms with your healthcare teams or attending educational webinars.

Group Advocacy

Group advocacy aims to foster and endorse community organizations representing the collective interests of those impacted by Parkinson’s or their families and caregivers. By uniting and voicing concerns as a collective force, these groups become influential advocates for change, addressing common issues experienced by a broader Parkinson's community. It's important to note that group advocacy can also manifest individually, whether by helping a loved one prepare for a doctor’s appointment or encouraging others to share their stories. Advocating for others extends beyond formal roles and refers to actively supporting the wellness of others and overcoming barriers to quality care (Hanson, 2022b).

Each type of advocacy plays a crucial role in promoting positive change for individuals affected by Parkinson's. Engaging in any of these advocacy types contributes to a more inclusive, supportive, and understanding environment for those living with Parkinson's disease and their caregivers.

The Importance of Advocacy

Advocacy entails actively speaking up, raising awareness, and taking action to bring about change. In the context of Parkinson’s, advocacy spans various crucial aspects:

Access to Care: Advocating for better access to specialized healthcare services, such as neurologists, physical therapists, speech-language pathologists, and occupational therapists, is essential for optimal management of the disease.
Research and Innovation: Encouraging and promoting research initiatives for new treatments, therapies, and technologies is vital to improve outcomes and quality of life for those with Parkinson’s.
Education and Awareness: Advocacy plays a significant role in dispelling misconceptions and cultivating a better understanding of Parkinson’s within the general public. This aids in reducing stigma and strengthening support networks for the Parkinson’s community.
Policy and Legislation: Influencing policies and legislation helps ensure that people with Parkinson’s have the necessary support, including access to disability benefits and workplace accommodations.

Getting Involved

Advocacy efforts within the Parkinson's community include various accessible and manageable ways for both individuals with Parkinson's and their caregivers to participate without feeling overwhelmed. Whether through signing petitions, participating in local awareness campaigns, or communicating with elected representatives, every person has the potential to influence and generate significant change. The collective impact of these individual contributions creates a force capable of driving positive advancements in healthcare, policy, and societal perceptions (Cohen et al., 2006). Here are specific areas in which to engage for effective advocacy:

Education is Empowerment: Knowledge is power. Understanding Parkinson’s and its management options is a crucial foundation for effective advocacy. Reliable resources, such as those provided by Parkinson’s foundations, research institutions, and healthcare providers, can offer a wealth of information. Learning about Parkinson’s better equips you to communicate your needs and what kind of support you require.
Building Support Networks: Effective advocacy is strengthened with allies. Joining support groups and connecting with individuals who comprehend the challenges of Parkinson’s can provide essential emotional support and opportunities to learn from shared experiences. It’s important to note that being a good advocate doesn't require shouldering the burden alone.
Speaking Up and Sharing Personal Experiences: Participation in community events or sharing personal stories through blogs or social media can raise awareness and cultivate empathy, fostering understanding and support. Effective communication is vital, ensuring your message is clear and concise to convey your needs accurately. Equally important is active listening, which facilitates the building of relationships and learning valuable information.
Engaging with Healthcare Providers: Establishing open and honest communication with healthcare professionals is essential. Being an active participant in treatment discussions, asking questions, and discussing concerns can lead to more personalized and effective care (The New Brunswick Association for Community Living, 2018).
Involvement in Research and Clinical Trials: Participation in research studies and clinical trials can contribute to advancements in Parkinson’s treatment. Always discuss these options with healthcare providers to make informed decisions.

Navigating Challenges

While advocacy is essential, it’s not without its challenges. Individuals with Parkinson’s and their caregivers may encounter various hurdles, including:

Emotional and Physical Strain: The management of Parkinson’s, alongside the additional demands of advocacy efforts, can amplify the challenges already present due to symptoms and their daily impact. Living with Parkinson's can often feel allconsuming, resembling a full-time commitment. Balancing advocacy with personal health requires recognizing the importance of self-care. Prioritizing mental and physical well-being is essential to maintain effective advocacy while maintaining a healthy balance.
Overcoming Stigma: The fear of judgment or misunderstanding can silence those affected by Parkinson's, inhibiting their engagement in advocacy. Encouraging openness requires patience, understanding, and the creation of a safe and non-judgmental environment. Breaking down these barriers of stigma gradually empowers individuals to share their stories, enhancing advocacy and understanding of Parkinson's disease.
Navigating Healthcare Systems: Understanding complex healthcare systems and policies can be overwhelming. Seeking guidance from Parkinson Society BC’s Healthcare Navigation Services, patient advocacy organizations, and/or social workers can be beneficial. Ensure to ask questions if something is not clear to you. Preparing the questions, you want to ask before a conversation or meeting can help. If you are not comfortable with certain decisions, seek a second opinion and maintain copies of all your medical records.
Sustaining Momentum: Maintaining momentum in advocacy efforts requires determination and perseverance. Some situations may be more difficult, requiring sustained effort over weeks, months, or even years to effect change. Celebrate small victories and stay motivated by focusing on the positive impact of advocacy.

The need for advocating for Parkinson's disease remains ongoing. There are numerous avenues to becoming an advocate, and it's essential to take the time to explore various options to find what best aligns with your abilities and interests. Discover ways to enhance advocacy in your current life, whether for yourself, someone else, or within your community. Although the prospect might seem overwhelming initially, embracing the role of an advocate can be immensely fulfilling and empowering (Cohen et al., 2006). By advocating for yourself and others, you contribute to fostering understanding, support, and positive change. Remember, every small effort towards advocacy is a step in the right direction.

Sources

Cohen, L. J., Comstock, A. L., & Kirby, B. J. (2006). Advocacy and the Parkinson’s disease community: a true triumph of the spirit. In M. Menza & L. Marsh (Eds.), Psychiatric Issues in Parkinson’s Disease: A Practical Guide (pp. 297–304).

Fight Parkinson’s. (n.d.). Advocacy. Fight Parkinson’s. Retrieved November 2023, from https://www.fightparkinsons.org.au/about-us/advocacy/

Hanson, J. (2022a, April 8). Practicing Parkinson’s Self-Advocacy. Davis Phinney Foundation. https://davisphinneyfoundation.org/how-you-can-be-a-parkinsons-advocate/

Hanson, J. (2022b, April 15). Advocating for Others. Davis Phinney Foundation. https://davisphinneyfoundation.org/advocating-for-others/

Hanson, J. (2022c, April 29). Parkinson’s and Policy Advocacy. Davis Phinney Foundation. https://davisphinneyfoundation.org/parkinsons-and-policy-advocacy/

The New Brunswick Association for Community Living. (2018). Tips for Being an Effective Advocate. Inclusion NB. https://nbacl.nb.ca/module-pages/tips-for-being-an-effectiveadvocate/

This content was published in the December 2023 edition of our monthly support group newsletter, GroupLink. The content was accurate as of this publication date.

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