An interview with Akemi Mercedes: Your Story is Medicine: Healing, Wellness & Empowerment for Parkinson’s on September 25, 2024
Please tell me a little about your background.
I graduated from the physical therapy program at Columbia University in New York in 2009, alongside my now husband, Carlos. In moving a couple times between New York and the San Francisco/Bay Area, we gained a lot of experience working with the geriatric population in skilled nursing facilities and home health care, but we definitely grew to love the home health setting the most. In any other physical therapy setting such as acute hospital, acute rehab, subacute rehab, or outpatient, there is only so much you can learn about your patient to try and help them become as safe and independent as possible in their home. However, when you are providing physical therapy services in their actual home, there is a whole other level of understanding of what specific struggles and challenges they face to get through their day. It is a privilege to be let into someone else’s life and home when they are in such a vulnerable state.
Although I deeply love my career, I found myself in a perpetual cycle of burnout. No matter what other setting or what other employer I tried, I would always end up feeling completely burned out in a couple of years. Working in such a broken healthcare system was constantly breaking me, and each time, I would somehow manage to put myself back together just enough to try again. After almost 15 years of working in this broken system, the stress and anxiety finally began manifesting physically. I would get regular dizzy spells, periods of nausea, I was constantly exhausted. It got to the point that I had to be put on a medical leave of absence for almost 2 months. The first few days, I just slept. Carlos was my rock. He was basically a single dad of two young boys because I had reached a level of burnout, anxiety, and depression to the point of not being able to function. It took a couple of weeks to finally start finding a routine and re-learn how to take care of myself. I also began relentlessly searching online for any possible solution to how I could continue to do what I love without sacrificing my family and health.
As long as Carlos and I have been working, patients would constantly ask us why don’t we start our own business. Carlos and I are not big risk takers and neither of us have a shred of business sense in our bodies. However, after a lot of research online and personal reflection, I decided to enroll in a business program for healthcare clinicians under the mentorship of a gentleman named Greg Todd. It was with his guidance that Carlos and I began to think about how we could continue to do what we love to do, but outside of all the endless restrictions of the current healthcare system. From there, The Kintsugi Wellness Practice was born.
Can you tell me more about your Advocacy?
Once Carlos and I decided we wanted to work with the Parkinson’s community, we dove right in and immersed ourselves in the community. We opened a Facebook account and joined several Parkinson’s support groups to learn more about specific fears, struggles, needs, and triumphs of the community and individuals in the community. We also joined Instagram and started following any accounts related to the Parkinson’s community, from The Parkinson’s Foundation, the Michael J Fox Foundation, and Dr. Michael Okun, to individuals such as @ladyduffgordon and @maddysmom_4u.
We started learning about all of the amazing classes and webinars that are offered for individuals with Parkinson’s, their families and caregivers, and for professionals that work with this community. One of the first webinars I attended was hosted by The Parkinson’s Foundation and Robert Cochrane, “Improvisation and Storytelling for Parkinson’s,” and it still makes me smile at how much fun I had! I learned about Robert’s incredible organization, “YAX!” at www.yesandexercise.org, and was able to add another incredible resource to my list to refer patients and their families and caregivers, and even my colleagues. Then, we saw The Parkinson’s Foundation’s “Moving Day” fundraisers, and immediately registered. The amount of strength, resilience, empowerment, and motivation we have been finding in this community is absolutely incredible. Through our social media accounts, we simply started sharing what we found valuable and inspiring and are trying to create content that just continues to spread awareness and knowledge about Parkinson’s and provide motivation and inspiration for those affected by the disease.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
I will never forget one of my first home care patients as a new grad in New York City. The feeling of imposter syndrome was overwhelming. However, the patient and his wife always expressed their appreciation for everything I was working on with him. I remember after one of our sessions, the patient’s wife shared a documentary with me about Rock Steady Boxing and when she saw how my face lit up at how incredible I felt this organization was, she began telling me I should start my own practice geared towards the Parkinson’s community. Up until the day of discharge, she was always encouraging me. We are still friends on Facebook, and she is always “liking” my family photos and commenting kind sentiments. I don’t even know if she would remember she had always encouraged me, but I certainly do.
Even more specifically, I feel I have a passion for witnessing people and creating space for each individual to feel seen, heard, understood, and VALIDATED by listening to their stories and narratives that create who they are. I believe that is one of the strongest medicines there is in life. Just as others may have heard, “If you have seen one person with Parkinson’s, you have seen one person with Parkinson’s.” How each individual with Parkinson’s can present so differently in physical symptoms alone, each individual also has their own unique story, with specific fears, struggles, and triumphs. Knowing and understanding that story is key in helping them find their innate value and learn how to define and identify what they want for themselves and their life.
What type of goals do individuals with Parkinson’s have when seeing your Advocacy?
The general goals of the individuals we serve can include simply being able to get out of bed or transfer to the toilet easier or being able to get out of the house to return to their daily neighborhood walks. However, as we continue to work with clients, we often discover deeper needs that go beyond the physical. Physical, mental, and emotional healing go hand in hand, and too often, the mental and emotional health of the Parkinson’s community, including their caregivers, goes unaddressed. You cannot compartmentalize a human body, and you must consider the whole person as you support them through any struggle they may be working through. It’s here we can help them discover their deeper needs such as addressing anxiety and depression, or caregiver burnout, among any other numerous challenges.
What type of training and how long are the programs?
The type and length of our services are wide ranging, depending on each individual’s needs and the needs of their caregivers. While we certainly include “traditional” aspects of physical therapy, we are an integrative and holistic practice that looks at the whole person. When appropriate, we encourage clients to consider referrals for other specialties that are outside our scope of practice and integrate what they learn with other practitioners into a holistic program.
What effect can your Advocacy have on an individual with Parkinson’s?
Our Advocacy may begin from the clinician-client relationship, with client-centered goals, but certainly stretches out to the entire Parkinson’s community and beyond, as we are constantly making efforts to immerse ourselves and stay active in the community and commit ourselves to supporting all efforts being made to advance Parkinson’s care and research.
What would you like to see as a future goal for your Advocacy?
One of our dreams is to ultimately have a collective practice and network of physical therapists, occupational therapists, speech therapists, social workers, registered dietitians, neurologists, geriatricians, psychologists and psychiatrists, that could provide all the services an individual with Parkinson’s would need in one place to address their physical, mental, and emotional needs. We also love the idea of being able to offer regular retreats for both individuals with Parkinson’s and their caregivers. A time and space dedicated to allowing deep connection with others and have fun participating in physical and cognitive and creative activities accessible to all stages of Parkinson’s, whether yoga, boxing, martial arts, improv, etc. Another dream would be to be able to have a non-profit that would focus on serving the Hispanic, Latino, and Black Parkinson’s communities, which are hugely underrepresented and underserved.
What events do you participate in?
We are currently participating in the Parkinson’s Foundation’s Moving Day at Home fundraiser, which can be found on our Facebook and Instagram accounts. We regularly attend webinars from the Parkinson’s Foundation. The most recent one being, “Improvisation and Storytelling for Parkinson’s,” with Robert Cochrane, which was phenomenal! Unfortunately, we weren’t able to attend the annual International Congress for Parkinson’s Disease and Movement Disorders conference in Philadelphia this week but are definitely looking forward to attending next year in Hawaii. We are extremely excited and planning on attending the World Parkinson Coalition Congress in Arizona in 2026! We are always looking for events, fundraisers, and conferences we can participate in to learn more and connect further with the community.
How does this also assist the caregivers?
As Rosalyn Carter said, “There are only four kinds of people in the world: Those who have been caregivers. Those who are currently caregivers. Those who will be caregivers, and those who will need a caregiver.” If we don’t support our caregivers, we don’t support the Parkinson’s community, so everything we do at The Kintsugi Wellness Practice will often involve the families, loved ones, and caregivers in their lives.
How can someone get in touch? What is your website?
We are still putting together our website, but we can be easily reached on our social media accounts!
Instagram: @the.kintsugi.wellness.practice
Facebook: The Kintsugi Wellness Practice
Facebook Group: The Parkinson’s Wellness Collective
How can others also become advocates for awareness?
There are an endless number of ways to help advocate for the Parkinson’s community! Get involved in any of the numerous fundraisers or attend the countless webinars offered by the Parkinson’s Foundation, the Brian Grant Foundation, and the Michael J Fox Foundation. Just learning more about the disease will also naturally move you to share more information with others. There so many amazing books out there, from “Winter Stars” by Dave Iverson and “Rebound” by Brian Grant, to “Ending Parkinson’s Disease” by Dorsey, Sherer, Okun, and Bloem, and Michael J. Fox’s books, “Lucky Man,” “Always Looking Up,” “A Funny Thing Happened on the Way to the Future,” and “No Time Like the Future.” Dave Iverson’s, “Capturing Grace,” is a beautiful documentary.
If you could add any questions to this interview that you may want others to learn about, what would the question(s) be?
I think I’ve spoken too much already, so I thank the readers for their attention and time!
In your opinion, what is the key to effective advocacy?
Connection and storytelling, sharing stories. (And this is why I am absolutely in love with your book series, “Voices of Resilience”!). If you don’t know someone with Parkinson’s disease, you will likely know one soon. Get to know their story. Our life stories shape us. Stories move us. Stories are medicine.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
I’ve struggled most of my life with anxiety and depression, as well as caregiver burnout throughout my career, which is another reason why it is such a personal priority of mine to incorporate the mental and emotional health in the support and services we provide to our clients and their caregivers. As a wife, mother, and healthcare clinician, I am constantly playing the role of a caregiver. Learning to take care of myself and recognizing what my limits are, when I’ve reached them, and when it is necessary to find time for myself is an ongoing struggle. Sometimes it’s hard enough to make sure I meet my basic needs – fuel my body properly, get restful sleep, spend time with loved ones, and in nature, etc. I also work hard to attend therapy regularly, practice mindfulness/meditation, and try and make time for a creative outlet. It doesn’t always happen, but I am always trying to improve that balance.
Why should people who don’t have Parkinson’s care about this?
As per the Parkinson’s Foundation, “The number of people with Parkinson’s disease will increase substantially in the next 20 years due to the aging population.” If you don’t know anyone with Parkinson’s right now, you are very likely to know someone soon.
Have you had any family members or relatives affected by Parkinson’s disease?
One of my aunt’s and a cousin’s father-in-law.
If you had one song that would tell us more about you or represent your life, which song would it be?
Not only for myself, but for individuals affected by Parkinson’s, I absolutely love Andra Day’s “Rise Up.”
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
Just as Christine Jeyachandran (a Parkinson’s blogger and filmmaker) said, “Stories can connect with people in a way that facts and scientific reports can’t.” Your story has inherent value. Your story is medicine. Please share your story.