An interview with Elikem Bruce: PD AWARENESS: CHANGING THE NARRATION, ONE COMMUNITY AT A TIME!!!
Biography
I work as a Research Manager, Community Engagement and Involvement Lead, and Support Groups Lead for people with Parkinson’s disease. I started as a preventive nurse, and over time, I have become increasingly focused on advocacy, helping patients, families, and communities understand and cope with their conditions. My goal is to bring people together, make sure their voices are heard, and create positive change that gives hope and dignity to everyone affected.
Please tell me a little about your background.
I am Elikem Bruce, a Nutritionist and Community Health Nurse by profession. I work in Richard Novati Catholic Hospital in Sogakope, Volta Region, Ghana. I am currently part of the multi-site Transforming Parkinson’s Disease Care in Africa project, funded by NIHR, managed by Newcastle University. My role for the project at my site is CEI lead, Support Group lead, Research Manager and part of the Qualitative research aspect of the project.
Can you tell me more about your Advocacy?
I am dedicated to transforming Parkinson’s advocacy in Africa from awareness into action by empowering patients, caregivers, and communities with hope. I lead monthly support group meetings, organize community outreaches and durbars for awareness and screenings, and use radio broadcasting to reach wider audiences. I also coordinate events on World Parkinson’s Day and train health professionals on the fundamentals of Parkinson’s disease to improve diagnosis and care giving to both patients and caregivers.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My passion is driven by a dedication, commitment, and consistency that bring about meaningful change. Since 2017, I have been deeply involved in Parkinson’s disease work, beginning as a community health nurse in a 12-month multi-center trial on Mucuna pruriens in untreated Parkinson’s disease in Sub-Saharan Africa . Seeing how myths and misconceptions surrounded patients’ experiences gave me a reason to raise awareness, support communities, and challenge stigma through education and research.
What type of goals does individuals with Parkinson’s have when working with you?
For the people I work with, the goals go beyond managing Parkinson’s day-to-day. They are about finding strength, dignity, and a sense of community through my leadership and advocacy role. Most important thing is, they want to be seen and heard, and they are ready not only to be part of change, but to help bring that change to life.
What effect can your Advocacy have on an individual with Parkinson’s?
Through advocacy, I help individuals with Parkinson’s feel seen, heard, and valued. It’s not just about managing symptoms; it’s about restoring dignity, building strength, and creating a supportive community where no one faces the journey alone. Together, we challenge stigma, raise awareness, and bring about real change that improves lives.
What would you like to see as a future goal for your Advocacy?
My future goal is to transform Parkinson’s advocacy from awareness into action, where individuals are empowered, communities are educated, and healthcare systems are strengthened to protect dignity and hope for a cure.
What events do you participate in?
I take part in support group meetings, community campaigns, and workshops that give healthcare professionals and families practical knowledge about Parkinson’s. I have shared abstracts at MDS conference, joined global awareness days like World Parkinson’s Day and Spark the Night, and worked with other health professionals to improve care. Through health outreaches and media programs, information is delivered in simple and clear ways, helping to demystify, end stigma and strengthen both families and the healthcare system.
How does this also assist the caregivers?
This helps caregivers feel informed, supported, and valued, giving them the strength to care for their loved ones while also caring for themselves.
How can someone get in touch? What is your website?
Email: elikembruce@gmail.com
Social media:
Facebook: Elikem Bruce
LinkedIn: Elikem Bruce
Instagram: brucekems
How can others also become advocates for awareness?
I would encourage everyone to join the course in raising Parkinson’s awareness. By learning, speaking up, and supporting families, you can help challenge stigma and bring hope to our communities. Together, we can turn awareness into meaningful action.
In your opinion what is the key to effective advocacy?
In my opinion, the key to effective advocacy is connection. It means listening to lived experiences, speaking with compassion, and showing up consistently. Advocacy works best when it builds trust and moves both hearts and minds towards lasting change.
How can we better fundraise to support a cure for Parkinson’s?
Better fundraising comes from being innovative, creative, collaborative, and transparent, making people feel their contribution is part of a bigger movement toward a cure.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
For me, spirituality and humanity have been my strength. I pray, read the Bible, listen to music and motivational speakers, and I love singing. These practices give me resilience and hope. As a nutritionist, I also see food as a form of care; it helps manage energy, supports brain health, and strengthens the ability to cope with disease, including Parkinson’s. Together, faith and nutrition remind me that care is not only medical, but also emotional, spiritual, and practical.
Why should people who don’t have Parkinson’s care about this?
Caring about Parkinson’s is not only about the disease, but it’s about standing together as a compassionate society, lifting each other through the hardest battles, and building healthcare systems that protect dignity and hope to maintain resilience. It’s about preparing for a future where neurological conditions may touch someone we love, and choosing empathy today so no one faces tomorrow alone.
Have you had any family members or relatives affected by Parkinson’s disease?
No. As a child, I knew a church member who lived with Parkinson’s disease. His journey left a lasting impression on me. Though he has since passed away, may his soul rest in peace. Remembering him continues to inspire my commitment to raising awareness and supporting others affected by the condition.He doesn’t ask for help and refuses help. He always want to do chores on his own which he struggles with all the time. Watching him as a child saddened me and I had questions not knowing who to ask and get answers.
If you had one song that would tell us more about you or represent your life, which song would it be?
‘God on the Mountain’ by Lynda Randle reminds me that life has its ups and downs, but that’s no reason to lose hope. It teaches me to keep believing, stay faithful, and trust that God will always see me through no matter what comes my way. This is the message I share with my patients: when you recognize there is a higher power and place your trust in it, you realize there is no need to worry.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
Care begins with knowledge, strength grows with community and together, we turn Parkinson’s awareness into action
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TogetherForSharon® In memory of my mother, Sharon to voice awareness & hope for a Parkinson’s Disease cure. Sharon’s Son, George
Support https://www.togetherforsharon.com/shop/
Would you like to share your journey! Reach out and together our Voices are so much STRONGER!