Patty Peterson: Why Patient Advocacy is Important

Show Notes

Patty Peterson, a participant of the Alliance’s Talk NERDY to Me program, reflects on what she learned from the program and the importance of patient advocacy.

Talk NERDY to Me is seeking advocates to participate in the 2020 research-advocacy training program designed to empower senior patients and their family caregivers to engage in patient-centered outcomes research. Find out more here.Check out Patty’s website here. Follow Patty on Twitter, Instagram, and Facebook

Episode Transcript

Sue Peschin:

Hello, and welcome to This is Growing Old, a podcast from the Alliance for Aging Research. I’m Sue Peschin, President and CEO of the Alliance for Aging Research. Today, I’m thrilled to be speaking with Patty Peterson, a past participant of the Alliance’s Talk NERDY to Me program. Patty is a dynamic vocalist, radio personality, and inspirational speaker. She’s a world-class jazz R&B vocalist, a jazz radio show host on KBEM Jazz88 in Minneapolis, check it out. A mainstay in the jingle and voiceover industry and she’s an inspiring presenter on the national speaking circuit. In addition to being an award-winning vocalist, both live and in studio, Patty has hosted radio talk shows. She’s been an actress and a model, has appeared numerous commercial voiceovers and jingles, and has performed the national anthem at several major venues, which I would love to hear one of those. Patty, thank you so much for joining us today.

Patty Peterson:

Well, thank you for having me and yes, I could make it possible for you to hear one of those Star-Spangled Banners, because I actually went into the studio and sang them, and also America the Beautiful. Just because it’s such a humbling thing to sing those words and to think about the history behind them and then to actually see people sing it along with you. It’s a very reverent feeling for me to be in that position. So anyway, one of the many things I get to do in my life, and it’s a lot of fun. Thanks for having me by the way. Thanks for having me.

Sue Peschin:

Absolutely. So, first of all, how have you been coping during the COVID-19 pandemic? And what’s your experience been like?

Patty Peterson:

Oh man, I’m going to go back to March where my husband and I stole a couple of weeks to go to Palm Springs as a working vacation for us. Stayed in a friend’s condo and I sang with my sister who is a performer out in that area during season, as they say, she’s a singer piano player. So there was a great big concert coming up, it was the second week of March and the first week we spent a lot of time in front of the television, looking at the primaries. And the second week it flipped over to COVID. And we, with that fear of the unknown decided it was time to come home a little early. So we hopped on a plane so that in the event that we would have been exposed, we could be home with our doctors. And I didn’t want to be in a situation where someone would have to learn my very involved health, history, medical history, and then treat me.

Patty Peterson:

And so that was a choice for both of us. He also, getting stents a few years ago, he’s got family, heart issues as well, but so that was our choice. When we got home, since we were coming from California, we chose to isolate for 14 days. Thank goodness there were groceries that could be delivered even in the snowy Minnesota days and we just hunkered down. And eventually as the time went on, I had to find myself running into a Target complete with mask, eye glasses at 10 to seven in the morning, so I too could find toilet paper. And it was really, I tried to have some fun with that and post a picture of myself, a selfie, in front of that aisle at Target. But as time went on, it was a little hard to keep up my bubbly spirit, shall I say?

Patty Peterson:

So, one thing that was really great for me is I was able to create a home recording studio to be able to continue my radio broadcasting. So my heart and my mind was still filled with music, even though my entire summer and fall of engagements, of which there were many, were completely wiped off my books. I’m also a grandmother to seven and a mother to four boys and two beautiful daughter in laws, I couldn’t see them. I couldn’t see my siblings, I couldn’t see my friends. FaceTime and Zoom became the way of the world. We celebrated my oldest boy’s birthday via Zoom on March 16th and complete with a nerdy little birthday hat I had to put on for him and whatever. So just trying to stay connected. I bet to me, for everyone and myself was really the challenge and it created a couple of serious meltdowns for me, where they lasted a day, but I’m not a crier. I don’t get stuck where it’s like, this is not me. I want my family over for Easter. I want things like that.

Patty Peterson:

And I allowed myself that day of true sadness because of course, underneath that is the fear of what is going on, we still have that fear. But as I’ve gotten warmer, by the end of April, I was able to sit in the yards of my kids and my grandkids and life softened. And I was always thinking that, oh, in a couple of weeks, we’ll be much better. Oh, in a couple of weeks, we’ll be much better. That hasn’t happened. So as you see, although I haven’t been able to sing very much, I have found my own ways of coping and my husband and I, he continued to work from home as well. He’s with SiriusXM radio. And we just went on hoping for the day when this was history not present.

Sue Peschin:

Yeah, no, I think it’s great. I appreciate your candidness because I think it’s hard for people sometimes to say, this has been challenging. And it is challenging for millions of people out there. So it’s helpful when people are honest about it and let others know that it’s okay for them to do the same. So you participated in the Alliance’s Talk NERDY to Me training. What made you interested in that program?

Patty Peterson:

First of all, I was invited to become a part of this. And after you go through something like I did 13 years ago, which is called an aortic dissection and emergency open heart surgery, you don’t know where your life is going to lead you. I’m one of the very lucky and blessed people who survived that, the night of that emergency open heart surgery, I received a partial mesh aorta and a new aortic valve. And it’s a St Jude mechanical valve, which I call my kick drum. If anybody has seen a drum set that big bass drum that sits front and center, that’s what it feels like when you’re getting used to it. But the unfolding of not only my being able to speak at Go Red for Women luncheons or becoming involved with the American Heart Association on a deeper level or even Minneapolis Heart Institute, which is where my work was done at Abbott Northwestern Hospital.

Patty Peterson:

These were all one led to the other and eventually I was invited to speak at the 40th anniversary for St. Jude Medical, and it was their lunchtime employee celebration. And from that came a suggestion for me to become involved with telling my story to the FDA, and this was through Heart Valve Voice. And then from Heart Valve Voice became a advocacy online phone conversations that we had with many people throughout the country about things that we would like to see different, the same enhanced. And so the training really began with that. Then the invitation came through Heart Valve Voice to become a part of this program. And I was reluctant because I’m a busy 65 year old and I wondered if I’d have the time, but I’m really glad I did because it showed me that there are opportunities to shed light on something that I was quite confused about at the time of my open heart surgery. And I can say more about that.

Sue Peschin:

That’s great. Well, what did you find to be the most valuable part of the Talk NERDY to Me program for yourself?

Patty Peterson:

I think the recognition that patient advocacy is as important as a regular doctor appointment, to be able to create that platform so that patients who have gone through something that another person might have to go through, that availability to talk to someone who is your after, when you’re thinking about the fear of the unknown, to have a touchstone with someone who has received a valve and know that they have a full active life, I think is really encouraging and empowering. The other thing for me is, although clinical trials are a little difficult for someone who’s about to receive a heart valve, we can’t really trial that one out. And if that is the case, then I’m wrong. But my interest lies more in the support of families who might not know that heart valve issues run in families. And that, that kind of knowledge needs to be first at hand. Within, okay, Grandma had it, oh, my cousin had it, my grandpa died of a heart oriented thing when he was 52 years old. How do these all relate?

Patty Peterson:

And then the fact that younger kids need to and younger adults speak to their primaries about the fact that yes, heart disease does run in the family, Grandma has a heart valve and et cetera. Or we, my grandma had an enlarged aorta and therefore an aortic dissection. These are all things that, unless you go through it, you don’t know that you’re supposed to talk about them. So for me, what Talk NERDY to Me was, was the big permission slip to enhance the advocacy program even deeper than I’ve experienced.

Sue Peschin:

Great. You spoke a little bit, it sounds like certainly knowing your family history and being able to break through stigma are very big around patient advocacy. Why do you think it’s important to be a patient advocate?

Patty Peterson:

I believe that finding peace within a scary situation is how some people can get through psychologically. Someone who’s been there and who’s living a full life, like I am fortunate enough to do, could be that touchstone of peace for someone else. I also believe that the advocacy also includes information that’s pertinent to each patient because each patient is unique in their set of circumstances. For example, can I talk about my story and what I wished I had known prior to my emergency open heart surgery?

Sue Peschin:

Please.

Patty Peterson:

Things that I would have appreciated prior is knowing that my aorta was enlarging by the aortic insufficiency, from the valve being floppy. That the aorta that comes out of your heart and does the upside down umbrella handle, that it was actually enlarging at the root. No one mentioned that to me. After my open heart surgery, the emergency surgery and the placement of the valve, my current cardiologist went through all of the echos I’d had since my late twenties, because originally they were watching my mitral valve. And he said, “Did anybody ever tell you you had a bicuspid aortic valve?” And I said, no. So for me, that’s pertinent for aortic dissection. And the fact that I was born with it could mean my kids were born with it or my siblings. So we use the language of the first degree relative, parents, siblings, children, who really need to be checked and looked at more closely. If I don’t know that information can you imagine the amount of people currently who do not know that information? That’s where patient advocacy comes in for me as well.

Sue Peschin:

I love that. And I also, I mean, your ability to speak to the technical aspects of your condition, I think also blows down another barrier, which is that patients are not capable of understanding what’s going on with them. And patients in many ways are the best at understanding what’s going on with them because you’re experiencing it in addition to wanting to know as much as possible about it, so that you can process it and do the best you can to help yourself to the extent that you can. So I think you’re blowing through a lot of misconceptions that folks have about, and also between the doctors and the patients, because sometimes providers have this view that, oh, the patient doesn’t want to know too much.

Patty Peterson:

I think you’re absolutely right about that. Can I say that was my experience? I don’t know, but in asking afterwards at the echo three months after the surgery, I said, why didn’t someone tell me? And the technician just lightly said, because you weren’t emergency room enlarged.

Sue Peschin:

Interesting.

Patty Peterson:

Interesting. Definitely interesting. But here’s a choice though too Sue, and that is that some patients like to give up their power to the doctor and what you feel is right. And I’m not one of those people, I got to know. I didn’t know what an aortic dissection was the night it happened to me, believe me, I wanted to know afterwards. It was like learning a new language in 20 minutes or less in that emergency room. So yeah. I choose to become empowered. Let’s put it that way and I encourage everyone to do that too.

Sue Peschin:

Yeah, I think that’s great. And I think in some ways it’s a bit of a paradigm shift for some folks, just culturally, because a lot of us grow up with the deference towards the medical profession. And so to break through that is not all easy for everybody. So why do you think others should sign up for Talk NERDY to Me?

Patty Peterson:

Well, I have a hunch there’s a lot of people out there right now who are going through something. And they’re either involved with someone who, let’s say maybe even a heart oriented group, which will give them information, or maybe they are that advocate already. And they feel like they would like to take their advocacy to the next level. And for this kind of a program, which in my experience, I can’t wait for COVID to be over so that we can dig deeper into this program, because I’ve got some great ideas about it. I think that the right people will be listening and they’ll say, I’m already doing some of this patient advocacy, how can I deepen this experience? Either as a patient or a caregiver or someone who simply cares. And I think that these people who are listening should become a part of this program. Because this is going to help with that peace that I was talking about earlier, I’m not talking P-I-E-C-E, I’m talking P-E-A-C-E. The peace for another patient who is going to be possibly involved in what not necessarily I went through, but something that needs to have patient advocacy.

Sue Peschin:

I love what you just said. And I do think that there is also a benefit to that kind of getting out of yourself and to helping others, to feeling stronger yourself when you do it. So I’m going to switch gears here a little bit. I have a fun question that we ask everybody, which is when you were a kid, what did you imagine growing older would be like?

Patty Peterson:

I have to tell you a fun thought I had, as you were asking me that question. You’d have to know my mother, Jeanne Arland Peterson was the most prolific jazz pianist who could have toured worldwide. She was an unbelievable singer. She also was live talent on our local CBS radio station, as a piano player singer before canned music came in in the early 1960s. Later, my father, who was also a musician joined, unfortunately we lost him from cancer at 48, but mother was a vibrant person until she passed. And she even did a retirement concert at 91. So to me growing up was going to be, I was going to be just like my mother. Now, I’m not the one who’s toured a great deal like my siblings have with very famous people, musicians, but I’m the one who has kept the home fires burning and had a marvelous career. So did my mom. So to me to be a mother and a grandmother, to be active with these younger people in my life and to have a meaningful career was all right there for me. My template lived to almost 92.

Sue Peschin:

I love it. That’s awesome. So you had a great model. So what in your view now that you said you’re 65, what do you enjoy most about growing older?

Patty Peterson:

That’s a really hard question because much like my mother Jeanne, she said, age is a number and mine is unlisted. That’s the plateau that we all work from, because I think when we five kids get together, we are young at heart and ageless and we play music together and we’re goofy together. And I think maintaining your youthfulness is fantastic. When you grow older, there’s no reason we can’t maintain that youthfulness. There may be a few more aches and pains, but work through them and enjoy your lives. What do I enjoy most? The first time my granddaughter, of course, I’m a mom of four boys, ran across the kitchen floor and said, Grammy, oh my gosh, what a heart melter and all of the little boys that I have five grandsons and two granddaughters. And then my four strong, sweet, sensitive men that I’ve raised. I enjoy that so much. And they picked gorgeous women in their lives as well, who are strong beautiful women.

Patty Peterson:

So to me, it’s about talking about life, talking about everything that has to do with life, with my friends, with my family. One of my most important things is having the ability to not only have great medical care, but to call these doctors, my friends. And to pursue something that enriches my life so much more than I ever would have if I hadn’t gone through what I went through medically. So my choice is to live a full life, and I encourage everybody to embrace that, step into it, do what you need to do to feel that joy and your peace in your heart.

Sue Peschin:

That’s awesome. I love it. I love how connected to your family you are and just how much buoyancy you have about enjoying the phase and the changes. So we definitely want to let folks know about how they can learn more about you and your work. You’re a jazz R&B vocalist, as I mentioned, and a jazz radio show host on KBEM, Jazz88 in Minneapolis. Tell us more details of how people can tune into you.

Patty Peterson:

Oh, that would be great. Jazz88.fm is that website to stream. And I am a part time host. So I show up at different periods, but have a regular show every Sunday from four until 6:00 PM central time. And then every other Sunday I do Sunday morning jazz from nine to noon. And that’s a lot of fun for me to delve into the history of jazz music, but also to feature more contemporary jazz artists as well. But I have a website and it’s all on there, www.pattypeterson.com. That’s Patty with a Y, Peterson is S-O-N. And it’ll talk about family concerts, personal concerts, when they all happen again that is. But I do have a couple of outdoor concerts coming up in later August and I’ve sung two outdoor concerts so far. And the joy of using my gift is really fun for me.

Patty Peterson:

So you’ll see some great pictures on the website, celebrities that I’ve hung out with, entertained with. And I, on my social platforms, I’m Instagram, Patty_Peterson, and also Facebook Patty Peterson fan page, or the one that I like to talk about, Live Your Gift, Patty Peterson, Live Your Gift, and that one is my talk. And that is to remember that no matter what, we have gifts that we were born with and to live them. And I’ve been currently writing my book about my medical experience and the joys and challenges and the deepening spirituality as a result of what I’ve gone through.

Sue Peschin:

Oh, that’s awesome. We’ll list these websites out so folks can find you. And we are not celebrities, but we are super grateful that you decided to hang out with us today. So it’s been wonderful talking to you. Thank you so much.

Patty Peterson:

Wonderful. Thank you. And you are real people and real people make the world go round. Thank you for having me. Have a great day everyone.

Sue Peschin:

You too. Well, that’s all for this week’s episode. We encourage you to follow the Alliance on Facebook, Twitter, and Instagram. Visit us at agingresearch.org to learn more about age-related conditions, diseases, and issues that impact the health of older Americans. Please subscribe now and rate us on Apple podcasts, Google podcasts, Spotify, or anywhere else you listen. Thank you so much and have a great day.