36. Are You NERDY? Become an Advocate for Older Adult Health with Talk NERDY to Me

Published September 29, 2021

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Show Notes

Teresa Wright-Johnson shares her experience being a patient advocate and participating in the Alliance for Aging Research’s Talk NERDY to Me training.

Learn more about Talk NERDY to Me in this episode and at https://www.agingresearch.org/nerdy/2021-call-for-advocates/. We are looking for patients, family caregivers, researchers, and clinicians involved in Alzheimer’s disease, heart valve disease, atrial fibrillation, chronic pain and/or disability, and macular degeneration in adults age 65 years and older. Participants successfully completing the workshop will receive a stipend of $1,500 and a Certificate of Completion for participating in the training.

Episode Transcript

Ashley Leonard:

Hi, everyone and welcome to This is Growing Old, the podcast all about the common human experience of aging. My name is Ashley Leonard and I am the development project coordinator here at the Alliance for Aging Research. A major part of my job is always seeing the alliances Talk Nerdy to Me program. Nerdy stands for nurturing, engagement and research and development with you. So the Alliance for Aging Research is Talk Nerdy to Me. Network empowers older adults and their family caregivers to collaborate with clinicians and researchers on patient centered outcomes research. Currently we are seeking patients, family caregivers, researchers, and clinicians to participate in the 2021 Research Advocacy Training Program designed to empower senior patients and their family caregivers. Beginning in early December, participants will meet three times a week for two weeks from 12=:00 to 1:30 PM Eastern time to learn about researchers in their field and each other. Research advocacy training empowers patients and family caregivers.

Ashley Leonard:

This research will help prepare advocates to serve as merit reviewers for organizations like the Patient Center Outcomes Research Institute or the National Institute of Health. Sit on research related committees, such as institutional review boards and partner with researchers in designing, implementing, or disseminating research. We also hope that participants bring the training back to their own communities and use it in their own personal care. But don’t just take it from me, here to talk about her experience with Talk Nerdy to Me is Ms. Teresa Wright-Johnson, who participated in 2019. Teresa, thank you so much for joining us today.

Teresa Wright-Johnson:

Hi Ashley. Thank you so much for having me.

Ashley Leonard:

So, Teresa, why did you decide to become a patient advocate and what does patient advocacy mean to you?

Teresa Wright-Johnson:

So, my journey with patient advocacy, I think about this question, when I decided, or how I decided? I think that this path in this journey was already before me. A little bit about my story is I was born with congenital heart disease. So I’ve been on this patient journey for my entire life. And what I realize now is, growing up my parents were my advocates and I just distinctly recall a moment between my mother and I, where she said to me, “You’re growing up, you’re going to become an adult. And one day you’re going to have to advocate for yourself. You’re going to have to speak up for yourself. It’s your responsibility.” So, as I look back to when I actively began engaging, it just made complete sense and it became am crystal clear to me in that moment that I had been being prepared for this path for most of my life.

Teresa Wright-Johnson:

I think the only difference is now, in addition to advocating for myself, I’m empowered and I now advocate for others. Cause I understand it, we’re all connected. So, it’s like when you have that knowledge and you have that passion, you not only want to change the trajectory of life for yourself, but you want to do it for others. And I think that is the defining moment for me. And what does advocacy mean to me? Advocacy means to me that I not move forward in my patient journey alone, that as I move forward, I bring someone else along. None of us are on this path alone, and we are all here by design. So advocacy for me means standing for patient and patient’s autonomy. It means being the pillar in my community, it means speaking for the unspoken and it means standing in a gap or, helping someone else find their voice. It is just to me, part of the human experience.

Ashley Leonard:

Absolutely. And that’s very powerful. I agree. Think advocacy it’s important to be inclusive and bring someone along that was really well said. And to jump off of that, can you please tell us, why you initially decided to apply to participate in the alliances Talk Nerdy to Me program?

Teresa Wright-Johnson:

Absolutely. So I was given the opportunity to participate on an advisory board for a heart valve voice few years ago. And from there I met Susan Peschin and we talked about this and I was so interested in learning more. So through my Susan, from Heart Valve Voice and Susan the Alliance for Aging Research, I was invited to the training. And I have to say it was very exciting. I didn’t know what to expect again. I call myself or I identify as being a seasoned patient, but every time I go to these different trainings and these different conferences, there’s always something else to learn. And that’s actually how I got invited to Talk NERDY to Me.

Ashley Leonard:

Wonderful.

Teresa Wright-Johnson:

Yeah.

Ashley Leonard:

That’s wonderful, That’s wonderful. Listing a good reference is so important.

Teresa Wright-Johnson:

Yes.

Ashley Leonard:

That is really great. What did you learn from participating in the training?

Teresa Wright-Johnson:

So much. So I’m going to share this and it’s humorous to some degree, but sometimes we think that we know so much, and as an advocate and as a speaker and as a writer, sometimes I’m like, “Okay, well, I kind of know this and I know that and, am I really going to learn? how much more am I going to learn?” And every time I’m super amazed and every experience is humbling. So, I mean, when I got to the training I knew about clinical trials, but we got so involved in what goes on in clinical trials and the technicalities and how to find a clinical trial. That emboldened me and that expanded my knowledge of clinical trials. The different organizations that were present that I was allowed to, or that I had the opportunity to interact with and learn more about, that was crucial.

Teresa Wright-Johnson:

And just the people who were there from the intersectionality of illness and caregivers, that was amazing because here’s the bottom line. When you go to these different trainings and conferences, you meet other people, and you realize that even though your journey may be different, it’s all about the human experience. So we come with different experiences. We come with different backgrounds, we come with different illnesses, we come with different situations, but we are all committed to a better quality of life to learning more, to banding together, to advocate. You find that common ground, which is to me the connectivity of humanity. So I mean, the training for me, the training was just, it was more than I could have expected and it really did exceed my expectations.

Ashley Leonard:

That’s amazing. That’s amazing. That’s our key takeaway that we want our participants to have. We want it to be something so unbelievably beneficial. And that’s great. To piggyback from off of that, have you used anything that you learned in the training in your own health journey since then?

Teresa Wright-Johnson:

Absolutely. So I am pretty involved, I’m very involved on multiple advisory boards and boards, and I had always been a really involved advocate and really involved patient, but what this knowledge did was, it expanded my vocabulary. I really advocate for diversity and inclusion in research for black people and people of color. I really advocate hard for that, because as you know, we are underrepresented in numbers in clinical trials. And what I did is like by learning about clinical trials. Just processing this information, it just emboldened me to even want to do more grassroot work and clinical trials and the recruitment for lack of a better word of black and brown populations and the underserved. So, a couple of my organizations, we are really committed to that. And I know I work on that front with, more specifically with heart, but also with multiple sclerosis. That’s one of my really passionate focuses for that.

Ashley Leonard:

That’s great. That’s great to hear. And why do you think others should participate in the training?

Teresa Wright-Johnson:

I think others should participate in the training because they would learn so much about the patient journey. They will hear about other experiences. They will learn about different organizations, such as PCORI and the NIH. They will learn what they can do as a patient to empower them and to empower their communities and take it back to their communities. And the icing on a cake is you get to meet so many different people from different spaces that you network with, and you never know what may come of that, what kind of collaboration may develop. You never know what you were going to learn and who you’re going to meet and how that may impact your patient journey.

Ashley Leonard:

That is so true. That is so true. And again, well put. To shift focus, when you were a kid, what did you imagine growing older would be like?

Teresa Wright-Johnson:

Actually, that’s a tough question. I’m going to tell you why it’s a tough question. So, when I was a little child, I loved baby dolls, Barbie dolls and things like that. So that part of me imagine growing older would be a husband and children. I never looked past that, if you ask me this question as, probably after I found out about, after I really realized that I had this lifelong condition, that I had to live with of aortic heart disease, congenital heart disease. I think my expectations were different because to be honest, we didn’t know what growing old would look like for me. My parents didn’t know what growing old would look like for me. So there was a time when I didn’t even imagine that I would grow old.

Teresa Wright-Johnson:

So I say that to say this, hope is so important. Research, clinical trials, advocacy, they all played a role. Great medical care, a great family, a great support system, they all played a role in my presence here, and my opportunity to speak to you about these things. So, although for that point in time, I did not know what growing old looks like. And to be honest, I still don’t really know because, who knows? What I am emboldened by and what I have resigned myself to do is to live each day, to appreciate the moments and to leave my footprints in the sand. And not only make this life about me, but make it about those who may come after me that may have a diagnosis that they don’t know about or that they’re afraid or someone’s mother or father or husband or wife, a care partner, who doesn’t really know about this life of the patient journey. I think that’s what our lives are, I think that they are tutorials and not for us, but for the community and a greater good. So that’s what aging looks like for me.

Ashley Leonard:

That is amazing. That actually answered the next question about what you enjoy most about growing old now. And that’s really powerful that you feel so embolden and empowered by creating a space to where you’re making a path for the next person. That is so amazing. And you are definitely the type of story we like to have as far as our program and how it’s beneficial to you. Teresa, thank you so much for joining us on This Is Growing Old.

Ashley Leonard:

Before we wrap up, I want to encourage everyone to learn more about Talk Nerdy to Me at Agingresearch.org/nerdy. The link will also be available in our show notes. If you are able to catch that we are looking for, as I mentioned before, patients, family caregivers, researchers, and clinicians that are involved in Alzheimer’s disease, as you mentioned, heart valve disease, atrial fibrillation, chronic pains, and disabilities and macular degeneration in adults, aging 65 and up. Our participants successfully completing the workshop will also receive a stipend of $1,500 and a certificate of completion for participating in the training. And we hope that you all are moved to apply. Ms. Johnson. I couldn’t have said it any better myself. So thank you all for listening to This is Growing Old. Have a great day.