Unscripted - Living With Parkinson’s Disease: A Patient Advocate’s Story of Diagnosis, Care, & Progress

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Welcome to Unscripted, The AMCP Podcast, a look inside managed care pharmacy. Listen in as experts explore the challenges, innovations, and opportunities shaping health care for millions of patients. This episode of Unscripted, The AMCP Podcast, is sponsored by AbbVie Inc. At AbbVie, we find answers that make life better for patients and our world. Today, we'll be discussing Parkinson's disease from the patient perspective, gaining insight into the journey to diagnosis, the impact on daily life, supportive resources, and the value of treatment.

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It's my pleasure to introduce our guest, Marty Acevedo. Marty brings a deeply personal perspective to today's conversation, drawing from firsthand experience navigating the complexities of living with Parkinson's, with a steadfast commitment to patients both as a registered dietitian and community advocate. Marty has dedicated much of her journey to empowering others who are living with Parkinson's. Welcome, Marty.

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Thank you, Fred. It's really a pleasure to be on. And before we start, let me just say I have thoroughly enjoyed working with you on the Community Advisory Board for the Michael J. Fox Foundation Parkinson's PPMI study. I know that's a great group, and it seems like we're actually making a difference with PPMI. Yeah, it's really been wonderful.

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And your insights have been fantastic. So why don't you begin by sharing some of those about your journey to the diagnosis of Parkinson's disease? Well, when I was diagnosed at age 44, I had hip replacement surgery that summer. And then after the surgery, the physical therapist noted that I had no arm swing. I had difficulty with my balance and gait, and then after exercise, after my therapy sessions, I had a really unusual tremor.

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So they referred me to a movement disorder neurologist. I was then diagnosed with essential tremor. Fast forward six years. I went back to that neurologist after a bout with breast cancer and other things, and she did confirm I had Parkinson's at that time. She had missed the diagnosis, you know, six years earlier or so.

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2004 is actually the time when my Parkinson's started. She prescribed Sinemet at that time and then a couple of other medications that I didn't start because I was in denial, and I was very angry with her. And I was going to prove her wrong. When I went through all the stages of grieving, I started exercising more, which actually was a good thing.

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And, you know, I just finally got to, “Oh, she's right. I need to accept this.” And I did start medication in 2013. And it's since been confirmed by other doctors that my diagnosis should have been made in 2004. The funny thing is, we were going to a baseball game. It was the NCAA baseball playoffs, and San Diego State was playing UCLA up in Westwood.

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And I thought, there is no way that I can walk from the car to the stadium and then up the stadium steps and sit there on metal seats for two hours watching a baseball game. But I took my first dose of Sinemet on the way up, and when I opened the door of the car, I hopped out.

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I outpaced my husband to the stadium, zipped up the bleachers, and really enjoyed the game. And I thought, wow, I should have started this a long time ago. So that's really a classic example, kind of, of the impact on your daily life. So what have been some of the other things that you've experienced as you've lived with this disease?

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And also, could you comment on when you got involved with the Michael J. Fox Foundation? Sure. As I mentioned, I had breast cancer, so that kind of confused things. I had a hip replacement because of a congenital dislocation of my hip. So I had that gait issue that complicated my diagnosis. I switched my care to UC San Diego in 2013 and had a fabulous doctor.

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He just really listened well. I noted that after starting medication, I did pretty well, but I had a stressful job at that point, and I went to him and said, you know, I think I'm developing some cognitive issues. And he said, no, no, no, you're not. It's just that stressful job you're in, and you need to get out of that toxic situation.

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And I would advise that you stop working. But we had neuropsych testing after that, and I was off the charts with anxiety and everything else. I scored higher than most people do. Fast-forwarding to 2020, I did the PD GENEration study for the Parkinson's Foundation and learned that I had two variants of the Parkin gene, which kind of guaranteed that at some point in my life I would develop Parkinson's, which I did.

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I had young-onset Parkinson's at the age of 44. So PPMI 2.0 at that time had just opened up to people with genetic variants, even if they were on medication or had deep brain stimulation. So I was able to join the study at that time. You talked about that initial response, which is just, you know, what I would sort of expect—that you did not want to deal with this.

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It was not something you felt ready to face, and I'm going to just go on. Can you talk some more about that? Just fascinating. In 2004, it was like I knew that Michael J. Fox had Parkinson's. And I thought, oh, I don't want to have to deal with, you know, what he's dealing with. It's like, there's no way I have Parkinson's.

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And yet that's for older people. You know, I was young, I was so young. And I knew one other person who had Parkinson's, and she had pretty marked dyskinesia. As I went through that denial period, I didn't feel great. All that time I was fatigued. I was working really long hours because it was taking longer to do things.

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And plus my job was getting more and more complex, and I just thought, I cannot live another 20 years like this, being tired all the time. And, you know, my shoulder hurt—all these things. So once I was diagnosed with Parkinson's, I still thought, well, wait, she missed it the first time. Maybe she's wrong this time too.

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And I researched the heck out of it because that's what I do. I'm a health care professional. I research everything. And I thought, well, I guess she's right. I went back to my primary care and he said, I would never have diagnosed you with Parkinson's. And he said, let's wait on starting any medication. So I waited a little bit longer.

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And as I said, starting the Sinemet had an immediate effect. Just starting the Sinemet. So I pretty much accepted that at that point. I was like, well, this is what I have. But the type of Parkinson's I have is different from what a lot of people have. Parkin is a variant you have to inherit from both parents.

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And I have a very strong family history, especially on my father's side, and my mom's side—her older brother had Parkinson's. Parkin PD is very slow in progression. Symptoms seem to be milder. We respond very robustly to therapy and we also, very quickly in fact, get side effects to that therapy. So I quickly developed this kind of dyskinesia.

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My doctor asked me one afternoon, are you nervous? And I said, no, not really. He said, well, you're making me nervous because I was moving around a lot—the wiggly type of dyskinesia. So he recommended deep brain stimulation. And in 2015, it just so happened that that same weekend, Bryant Gumbel was doing a special on National Geographic where he was actually in the operating room with someone who was having deep brain stimulation.

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So we watched that and it kind of took the fear away for me. I understood what was going to happen, and I saw the outcome and it was, oh, yeah, I'm going to do that if it's going to help me. So I had deep brain stimulation on January 7th of 2016, and I say that because I got my life back.

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Wow. It's fascinating. Fantastic. You mentioned also, you said you had this great doctor at UC San Diego, I believe it was. And obviously navigating the health system is a difficult thing. You happen to be in the system, which may make it easier sometimes. So can you talk about what made a great doctor for you and how you managed to find that—or whether it just dropped in your lap—what happened?

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Just so. I knew that yes, I wanted to go to UC San Diego. They're a research institution, and they are, I feel, the best health care provider in our county, although we have some great health care providers in other institutions. But he just listened and didn't make any assumptions—just listened to what I was saying and explained what that meant.

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We spent two hours with him that first visit. The receptionist kept knocking on the door and saying, the doctor says you need to get on to your next patient. And he said, okay, okay. And then the receptionist would leave and he'd say, I'm going to spend as much time as you need, and I'll spend as much time as the next person needs as well.

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So just don't worry about those interruptions. He heard everything that I said. I said, my husband woke up one morning with my handprints on his neck, and he said, oh, sounds like you have a sleep behavior disorder. So we talked about what to do for that, and he prescribed something. He acknowledged that I had delayed, you know, starting medication.

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And that was okay. He didn't, like I said, no judgment. He cared deeply and was very—was brilliant at his job, and still is. He's no longer my movement disorder neurologist. He left shortly after my deep brain stimulation to go set up another clinic. He's probably one of the best I've ever had. That's really fantastic.

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So, Marty, what are some of the newer delivery systems or therapeutic approaches that you're seeing that are effective? Well, carbidopa/levodopa is the gold standard for treatment of Parkinson's, and it's been around a very long time. And there's different tolerance levels for patients. But there have been some advances with that, with intestinal delivery of a levodopa gel system.

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And then recently, just this year, the FDA approved a new system that is new. The levodopa is delivered subcutaneously, kind of like an insulin pump for patients who have diabetes. People with Parkinson's just have to change the site every three or four days. But they get the continuous delivery of levodopa that really removes the fluctuations in the efficacy of the drug because they have a constant infusion of levodopa. So they don't have ups and downs—less “off” time and fewer side effects.

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What other supportive resources or needs do individuals living with Parkinson's have? Well, there are support groups in most areas, and support groups are, for many people, very helpful. I did not find them helpful for me because I was young, and when I walked into that first support group meeting, I was taken aback because there were people in wheelchairs with feeding tubes,

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slumped over in their chairs, and everybody looked so depressed. And I thought, this is not going to be good for me. But since that time, I've spoken at numerous support group meetings and such. The Michael J. Fox Foundation has a wealth of information on their website, as does the Parkinson's Foundation. The Davis Phinney Foundation has lots of podcasts and webinars and such, and they have a really great book series—two books actually—called Every Victory Counts.

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One is for the patient living with Parkinson's and the other is for the care partner, because care partners are equally as important. And the journey in Parkinson's affects not just the person with Parkinson's; it affects the family and friends of that person—everybody—and affects them in a very profound way. Especially as we go through our journey, the care partners take the brunt of the anger and frustration and the actual care provision as the condition progresses. Locally,

00:12:16:07 - 00:12:38:18
we have Parkinson's Association of San Diego. I've been on that board since 2014 and have been the president of the board for the last four years. We have a great number of resources on our website and are very connected to the community. We have 21 support groups in San Diego County. We're trying to reach more people because we know we're not reaching everyone.

00:12:38:20 - 00:13:02:03
But there's lots of resources out there. And I really tell people, go to reputable resources that are providing medically sound, evidence-based information. Don't turn to Doctor Google. Absolutely. And one of the points you raise is really important, I think, to recognize with this. There are variations in this disease, and individuals all have a unique way that this disease presents in them.

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And I think about my father, who had dementia with Lewy bodies. And so that impacts cognition really early and very strongly. And the tremors come as well. But watching my mother as the caregiver over the years was just unbelievable—the amount of time, the effort, trying to keep my father in the house versus moving him someplace else and things like that.

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So each person goes through a unique journey. You raise something very interesting too—as a younger person. Obviously, you see a lot more individuals who are impacted who are older. And so finding a place where you fit in, where that individual fits in with the resources, is obviously critical. Yes. When I learned that I had the Parkin variants, I had just changed to a different movement-disorder neurologist at UC San Diego, Dave Coughlin, who's actually part of the PPMI studies,

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and he knew someone who had studied extensively that particular genetic trait. And so he explained everything to me—what it meant for my future—and it just made so much sense to me because I thought, why am I so different from everyone else? Why do I not have tremor?

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Why can I still smell? I don't have constipation. Not that I wanted all those things, but, you know, I just was so different. So yeah, it just clicked into place and that was a great benefit to me. The best news that he gave me was that people with my type of Parkinson's don't develop Lewy bodies, so I likely would not have any cognitive decline related to Parkinson's.

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Other types of dementia could happen, we don't know. And then that was well confirmed when I was able to see the return of my results with the PPMI study. I know it was negative for alpha-synuclein, and that's excellent. Good to hear. So, when you think about this—and you've obviously lived with this quite a long time and dealt with insurance companies and things like that—

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as you walk through this, what should the payers be thinking about and what should they know about this disease? That everyone is different. Everyone walks a different walk. Everyone has a different journey with Parkinson's. I'm unique. My doctor says, don't tell people about your story because they're going to want to be like you and have the mild symptoms that you have, and you'll give them false hope, which, you know, has happened on occasion. But everyone's different.

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Everyone responds to therapies differently. Everyone responds to medication differently. If someone doesn't tolerate generic Sinemet, then they need the brand-name Sinemet. If they need 40 sessions with a physical therapist, they need 40 sessions with a physical therapist, and that needs to be paid for. If they're having trouble swallowing, they might need a number of speech therapy visits as well.

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And I think the payers need to realize that this is not something that you go in and fix and it's fixed. It's something that's progressive, it's neurodegenerative, there's no cure at present. And we're all very, very different, needing different types of medication. And we're not going to respond the same way. Each of us will respond differently to everything that happens.

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So there's a saying that goes, if you've met one person with Parkinson's, you've met one person with Parkinson's. And that's very, very true. So important. So now we're sort of approaching this where we're beginning to talk about potentially disease-modifying therapies. What are your hopes as you look at this for the future? Personally, I have been in touch with someone who is actually funded by the Fox Foundation for studies.

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She's devoted her entire career to studying the Parkin gene. So I actually have a Zoom call with her later this afternoon where she's going to tell us about the latest research related to gene therapy. So that's one of the disease-modifying techniques that's happening. And there's a lot of information since the biomarker was discovered with the alpha-synuclein misfolding and the assays that are able to detect that 93% of people with Parkinson's have that misfolding of the alpha-synuclein.

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So that's triggered a lot of research on other things. There are so many more therapies and medications and things that will change the course of the journey now than there were 20 or so years ago, when I was first diagnosed and when my grandmother was ill. She was never diagnosed, but she had nothing. Her doctor actually told her she needed to walk, which was unusual back in those days.

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And she decided, well, walking is boring. I'm going to learn to play golf. And she became a senior ladies champion of her community way back then. But we've come so far from there, where we know exercise is important. It's the only thing that slows progression that we have right now. But there are so many other things that can make your life more comfortable.

00:17:54:19 - 00:18:21:03
Improve quality of life. Deep brain stimulation and focused ultrasound can help with tremor. We've identified that depression, anxiety, and apathy in Parkinson's are different from those in the general population, and that there are different ways of therapy for that, different medications that can help. So that's amazing, because that can really be devastating to someone and really change the way that they live their lives.

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There are stem cell treatments that are in trials. I think there's five different studies in the U.S. right now that are actually infusing their own stem cells or another person's stem cells into their brain. The science is developed from stem cells on your arm, and they can convert those into dopaminergic neurons that they infuse into the brain. And that research is looking pretty good so far.

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So we'll see. It's been a long time coming. And that's the thing with a disease-modifying therapy—it takes a lot of time and effort and research and frustration to get the drugs to market and, you know, to prove that they're efficacious and to get them to the market, to the people who need them.

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Well, I want to thank you so much for coming on today, sharing your story, but also for all the advocacy work that you do. It really is a blessing for the community. Thank you. I get more from it than I give, I know that. And thank you for listening to this episode of Unscripted, The AMCP Podcast. This episode was sponsored by AbbVie.

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For more information about AbbVie, go to AbbVie.com.