An interview with Maria Miranda LMSW on Advocacy on November 6, 2023 by George Ackerman, Ph.D, J.D.
Biography
I am a New York State Licensed Social Worker; I work at a non-for-profit agency that serves homebound older adults in the NYC area. Several of my clients are diagnosed with either Dementia or Parkinson’s Disease and my role is to provide support and secure services so that they can not only survive but THRIVE within their homes/communities.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My passion for Parkinson’s/Dementia Awareness originated 26 years ago, in 1997, when my Grandfather was diagnosed with vascular dementia and I helped my grandmother and mother care for him. I was 9 years old.
While my grandfather wasn’t diagnosed with Parkinson’s Disease, the area of his brain that was affected by the vascular dementia is the same area that is attacked by Parkinson’s Disease, so he exhibited those symptoms.
My grandfather was a father more so than a grandfather to me as he helped to raise me, so the challenging task of having to help care for him, even as a child who was in need of care, was not a task I questioned or rebelled against.
I even took it upon myself to learn everything there was to know about Parkinson’s and Dementia. I remember being 9 and going to my local library checking out every book there was about the illnesses – I had no idea what I was reading, but I had a willingness to learn and that gave me the capacity to understand and over time, develop a passion for being involved in the awareness of Parkinson’s/Dementia in hopes of finding a cure.
Only now do I have the capacity and confidence to begin large-scale advocacy work; sharing my caregiver story at the National Alliance for Caregiving’s 1st Caregiver Summit a week and a half ago was my starting point. It took some time because I had to devote time to healing myself given the experiences that I went through earlier in life.
What type of goals do individuals with Parkinson’s have when working with you?
The clients that I care for, who have Parkinson’s Disease, all strive to remain independent within their homes.
What effect can it have on an individual with Parkinson’s?
My clients embody the belief of “home is where the heart is”; their sense of well-being is higher being at home amongst family, friends and their treasured items/photographs.
How does this also assist the caregivers?
Speaking from personal experience and from working with clients as a social worker, there is a bi-directional relationship between a caregiver’s sense of well-being and the client’s sense of well-being.
Caregiving can easily (and I dare to say automatically) be a 24/7 job, and this doesn’t even take into account a caregiver’s other responsibilities to other loved ones and more importantly to themselves.
When I begin working with clients by securing services such as home-delivered meals and/or home care, the caregiver’s stress levels decrease as they are receiving the help they need to care for their loved one.
What type of training and how long are the programs?
To facilitate the ability to do community-based work, my agency hosts continuing education seminars throughout the year. The seminars range from an hour to 3 hours long and staff are trained on different topics related to caring for clients in a community-based setting. Several of our training courses are related to learning about the illnesses that clients experience and best practices on how to provide for their needs within their homes.
What would you like to see as a future goal for your programs?
I think in any non-for-profit agency, a greater intent to work as a team to do large-scale advocacy work. In social work, advocacy is one of the foundational pillars of practice.
Agencies do experience the challenges of having to keep a large client base with very little staff, which takes significant time away from conducting other tasks such as advocacy work. Honestly, this is something that I am experiencing right now.
I believe, however, that to incorporate more advocacy work, social workers must start advocating for themselves – this is where it can start.
What events do you participate in?
Before participating in the National Alliance for Caregiving’s Caregiver Summit (mentioned previously), I’ve volunteered and/or participated in local walks/races, a lot of them centered on Dementia/Parkinson’s Awareness.
How can someone get in touch? What is your website?
Instagram: @maria_m_lmsw
LinkedIn: https://www.linkedin.com/in/maria-miranda-lmsw-b9497555/
How can others also become advocates for awareness?
I have a saying of: “Be open to learn and learn to be open”
To start becoming an advocate:
LEARN about the cause(s) you’re wanting to advocate for by reading related literature and going to events and speaking with others about their experiences.
And while doing this, learn to be OPEN by contributing your own thoughts, beliefs and experiences.
The above creates a collaborative community of advocates which I believe is the most effective way to advocate.
In your opinion what is the key to effective advocacy?
Effective advocacy starts at the individual level, with the development of courage, confidence and compassion.
From there, being curious to find a community to communicate experiences/beliefs/values and to then collaborate/compromise on building a strong platform to use for advocacy.
How can we better fundraise to support a cure for Parkinson’s?
I’m always turning it back to the community – I really love the idea of group events for fundraising; for example, birthday parties that in lieu of gifts would ask for donations to then send to a related Parkinson’s Advocacy group, work events that do the same, etc.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
I am a runner, weightlifter and nature walker – I strive to remain active.
I keep my mind active by devoting more time to reading and writing and less time watching television.
I focus my diet on Whole Foods and products with little to no artificial ingredients.
I also go to therapy.
Why should people who don’t have Parkinson’s care about this?
People need to care about Parkinson’s Disease because the facts below speak for themselves from the Parkinson’s Foundation https://www.parkinson.org/understanding-parkinsons/statistics
1 million people in the U.S living with PD; 10 million worldwide living with PD
90K people diagnosed with PD each year in the U.S
By 2030: 1.2 million people in the U.S will be diagnosed with PD
And let me not get started on the costs associated with PD.
We all need to care and advocate for a cure because this all indicates that there is a good chance that someone we love or even us will be stricken with this disease.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
If there is anything I learned in life as a young family caregiver and now as a social worker serving clients, it is this: Life is going to be full of peaks and valleys and the experience of those two things is what you make it. You can choose to freeze and react to things as they arrive or you can make the intention to learn, seek community, and share your story to find a way to a cure, and be a part of creating a better future for those who may be impacted by PD.