An interview with Katherine Autin CEO/Founder, BCPA (Board Certified Patient Advocate) Parkinson Partners, LLC on November 15, 2023 by George Ackerman, Ph.D, J.D.
Katherine served on the Louisville Parkinson Support Center of Kentuckiana’s (PSCKY) Board of Directors for four years and then joined the staff as Director of Support Services for PD patients. She served as first contact for the PD community, created a PD support group training manual, developed and led numerous PD support groups, and trained facilitators/leaders for these groups. Since 2004 she has educated and helped hundreds of pwps and their families with the day-to-day challenges of PD by providing practical information and effective strategies for living well with PD. During her work at PSCKY Katherine became aware of a critical element missing from care and support available for pwp’s, that of effective individual patient advocacy and education. That is why she created Parkinson Partners to serve as a guide to help people living with Parkinson’s disease and their family caregivers. In 2014-2017 Katherine was a consultant serving as Parkinson’s Director with FirstLight Home Care Louisville, training staff and caregivers about PD, assessing its PD clients, preparing client care plans, and facilitating PD support groups.
Katherine believes that pwps are often kept from attaining the best healthcare outcomes and the highest quality of life possible by simple obstacles that can be removed — if you know how. Her goal is to help pwps and their families through this complex journey by serving as their advocate, educator, and facilitator for them with healthcare professionals, building care teams, developing short and long-term strategies, and accessing options and resources available in their quest for better quality of life and better healthcare outcomes. She also trains those caring for them in or out of the home, facilities, and hospitals.
Katherine Johnson Autin is from Alexandria, Virginia and has a B.A. in international studies and cross-cultural training from the School for International Training in Brattleboro, Vermont, previously famous for its Peace Corps training programs. Katherine lived in Washington, D.C. where she met her husband, John David Autin (known as David). In 1985 they moved with their son, Michael David to New Orleans, Louisiana, and in 1991 David’s job moved them to Louisville, Kentucky. Katherine speaks French and Italian.
Katherine’s father, Haynes Bonner Johnson was a Pulitzer Prize winner in 1966 for his coverage for the Washington Evening Star of the civil rights movement in Selma, Alabama (Mr. Johnson walked with Martin Luther King in Selma). Katherine’s grandfather, Malcolm Johnson won his Pulitzer Prize in 1949 for his local reporting for his 24-part series “Crime on the Waterfront” on which the movie, On the Waterfront was later based. They are the only father and son Pulitzer Prize honorees.
Can you tell me more about Parkinson Partners, LLC?
I believe that people with PD are often kept from attaining the best healthcare outcomes and the highest quality of life possible by simple obstacles that can be removed — if you know how. My belief is that they need a Parkinson’s coach and guide. My goal is to help pwps and their families through this extremely complex journey by serving as their advocate, educator, and facilitator for them with healthcare professionals, building care teams, developing short and long-term strategies, and accessing all options and resources available in their quest for better quality of life and better healthcare outcomes.
Currently, there are two critical options that make a difference in your quality of life when you live with Parkinson’s symptoms, they are medications/treatments, and exercise (physical and brain). I teach every client and their family caregivers that everyone with PD has a different experience, and it is not prudent to assume anything about their PD journey just by observing others with the same diagnosis. I also show them how to communicate with medical professionals, to track their symptoms and medication side effects, access resources to learn about possible medications and treatments, to adapt to changes that come in a life with a PD diagnosis, and how to assess when it may be time to move to a senior community and what questions to ask of paid or private home and facility caregivers. Every client I work with has a different experience, so I guide them through their journeys as long as I can. I also refer them to other professionals as needed.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
Ever since my husband David was diagnosed with Parkinson’s disease (PD) in 2004 when he was 51, my passionate goal has been not to just be an advocate and guide for him, but to help all people with PD and their family caregivers through a very difficult and complicated journey. I’ve attended every medical appointment, test, hospital visit, and even a clinical trial with David. 2004 changed both of our lives and started my journey of learning every nuance about PD. Almost from the moment he was diagnosed, I attended PD support groups where I learned about the incredibly multi-faceted journey that everyone with PD goes through. A few months after David was diagnosed, I was asked to lead support groups in Louisville and to serve on the non-profit Board of Directors for the Parkinson Support Center of Kentuckiana in Louisville. During the four years I served on the Board, I led and created PD support groups in Louisville and other cities in Kentucky and did PD education programs for our community. Living with my husband, I saw new symptoms occur, recognized his medication regimen did not always affect him the same way every time he took the meds. We developed a tracking system to show his movement disorder specialist what was happening, thereby helping her develop a new regimen. Timing and dosing, along with trying new medication options has made a huge difference for many years. We still track everything he does every single day.
I truly believe there will be a cure for PD, but I also believe in the meantime, we must do everything we can to offer those living with PD and their family caregivers all opportunities to enjoy the best quality of life possible!
What type of goals do individuals with Parkinson’s have when working with you?
Clients find me on my website and are referred to me by their family and friends, or colleagues of mine in the senior provider community. I do not pay referral fees, nor do I accept fees from those referrals I make to other professionals that my clients, or their families may need.
When clients work with me, they and their family caregivers are searching for someone who can help them understand what this disease is and how they can live better with it. Every client has expectations that they will find someone who can answer their questions, quell their fears that they are alone in their journey, and are unclear about what neurologists and other medical professionals can do to make them feel better.
Every client wants to find someone who can do these primary things. What they don’t know is that there is someone with twenty years of experience helping hundreds of people with PD and their family caregivers who can help with these quests. I also give them specific guidance with a list of things that need to be done. I guide them by helping them develop goals in order of priority. One of the first goals is for them to have their critical legal documents done immediately in case of emergencies, including hospital visits. I also discovered whether they have had PT, OT, and speech assessments done. Occasionally, I also check to see if they have had a swallowing test done if I observe it is advised. I view these assessments as setting benchmarks for their doctors to refer to as PD progresses and changes. Once those assessments are established, we move to goals in working with their doctors to ameliorate their symptoms and medication side effects with a medication management tracking system. For that goal, I teach them how to prepare priority questions to discuss with their doctors. These are just a few of the goals that we work on. Then we move to the next priority goals.
What effect can it have on an individual with Parkinson’s?
When my PD clients work with me, they are relieved that they are not alone in this journey, and someone genuinely cares about their welfare. Ultimately, this lowers the stress and anxiety they have been feeling that they are not sure what to do or who can help them. Stress and anxiety that folks with PD experience leads to exacerbated symptoms, so the goal is to lower both. They have confidence that my experience will help them live the best life they can. When their family caregivers are involved, their stress level is also decreased. This helps them to be better caregivers and care team members for their loved ones.
What would you like to see as a future goal for your programs?
I want to help as many people with Parkinson’s and their family caregivers as possible through this ever-changing, complex journey. My dream is to serve as a Parkinson’s Advocate and Coach consultant virtually or via phone with primary and neurology offices to help newly diagnosed patients who want guidance from someone who understands the complexities of PD and who has helped hundreds of folks with this diagnosis. I am a 24/7 caregiver for my husband David, so can work with the patients and their caregivers at the same time. In fact, I find if the family members are open to working with me to help their loved ones, clients do much better when family learns everything together. Parkinson’s requires a team approach for the best quality of life and healthcare outcomes.
What events do you participate in?
At this time, I lead a monthly PD support group in Louisville at a senior living facility and I run a twice monthly virtual Caregiver Masterminds meeting.
In the past, I have attended the World Parkinson’s Congress in Washington state, a national Parkinson’s symposium in Georgia, and I have lobbied Congress with the National Parkinson’s Foundation. Of course, I have attended many PD conferences in Louisville and Indiana.
How does this also assist the caregivers?
Parkinson’s does not just change the life of patients. Family caregivers have to adjust their lives to be a caregiver for someone living with an ever-changing disease. When folks with PD work with me, I work with the family caregivers at the same time. They are the most important members of their loved one’s care team. If the caregivers are not doing well, they cannot be the best care team member for their loved ones. I include caregivers in all the PD education I offer and encourage them to learn everything about PD at the same time as their loved ones. I share with the caregivers everything I have learned from my own 20+ years of caregiving and what I have learned from other caregivers in all levels of care.
How can someone get in touch? What is your website?
I prefer to speak with people on the phone at 502-314-8307, so please leave a message and I will return the calls as soon as I can. We will schedule a no obligation free 15-30-minute time to talk by phone or on Zoom so that you can tell me about your situation. During that call, I will assess if you or your loved one would be an appropriate client, and you can decide if you want me to be your Patient Advocate. I have been hired by many caregivers to help their loved ones and that works well most of the time, depending on their loved one’s willingness to work with me. On my website, parkinsonpartners.com and my facebook.com/parkinsonpartners page, there are videos about me and my husband. You might enjoy watching them.
How can others also become advocates for awareness?
I believe the best advocates are those who have PD and their families and friends. Often, family caregivers who live a challenging caregiving journey are driven to share with their community what they have learned. In addition, spouses, and family members whose loved ones have passed away with PD also have the drive to educate the world about the disease. In my years of educating the community about PD, I tell folks I hope they can learn tips about how to help someone with PD. At healthcare fairs and conferences, I also do a PD screening questionnaire with 16 questions. If they answer “yes” to three or more questions, I suggest they may want to talk to their doctor or a neurologist. I also preface the screening with the caveat that these questions relate to neurological symptoms and may not be PD.
If others want to be awareness advocates in their communities, they could benefit from shadowing advocates like me who are passionate about sharing expertise.
In your opinion what is the key to effective advocacy?
Never assume you know or even understand what someone with PD is experiencing strictly from observation. Often, you will miss something critical if you don’t ask the individual detailed questions. To do this, you need to know what questions to ask. Remember, everyone with PD has a different experience and many do not have the “expected” tremors.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
My husband and I live by this quote from our life experience. “Remember, in life, it’s what you don’t know that makes all the difference, both good and bad”.
I tell my support group members and clients to enjoy the good times with your loved ones and don’t forget to laugh!