Parkinson's Policy Podcast: Dr. Sara Whittingham

“Oh crap.” 😮 It’s the unfiltered thought so many people have after a diagnosis, and it’s exactly why Dr. Sara Whittingham used it to title her incredible book, Oh Crap! It's Parkinson's: A Rebel's Guide to Taking Back Control of Your Life.

We recently interviewed Sara on the Parkinson’s Policy Podcast, and her energy is absolutely infectious! As an Air Force veteran, M.D., mom, and Ironman triathlete living with PD, Sara is a force of nature.

In this episode, we talk about:
Shifting the mindset from "patient" to "person with agency."
The power of finding your "outrageous goals" and purpose.
How she’s taking the rebel fight all the way to Washington, D.C., to advocate for better care and research.

If you or a loved one are navigating this journey, Sara’s blend of medical insight, lived experience, and grit is exactly what you need to hear today. 

Transcript

SPEAKER_00 0:12

Welcome everyone back to another exciting episode of the Parkinson's Policy Podcast, where we advocate together to raise awareness and advance meaningful policy for Parkinson's and the entire community. From Washington, D.C., at the Capitol and beyond, we bring together senators, representatives, researchers, and advocates to amplify the voices of the people living with Parkinson's disease and their families. My name is Dr. George Ackerman, Sharon's son, and founder of Together for Sharon, and my incredible co-host joining me, Margaret Preston, president of Power Over Parkinson's. And we just want to welcome our incredible community back for another important policy podcast.

SPEAKER_02 0:53

Absolutely. Thank you so much, George. And I have the honor to introduce our next guest, Sarah Whittingham, is a physician, an Air Force veteran, and endurance athlete living with Parkinson's disease. Drawing on both medical training and lived experience, she writes about navigating diagnosis, identity identity, and life after uncertainty with clarity, compassion, and restraint. And she's the author of her first book, and we're all excited to have a copy of it. I think she's about to pull it out. Yes. So, Sarah, without further ado, thank you so much for joining us on our show and for everything you do as a Parkinson's advocate. Thank you.

SPEAKER_01 1:33

I'm happy to be here. Absolutely.

SPEAKER_00 1:36

Well, I can't see, but I have the socks on.

SPEAKER_01 1:39

No, I need to wear my socks.

SPEAKER_00 1:40

That's something important. Because if you meet, I had the honor finally to meet Sarah, but she's been someone I consider family for many years. We spent many nights on messenger, uh instant messenger, and also ways to help promote together the community because together I feel, and I know everyone on this uh panel will agree our voices are so much stronger, but to be able to have you back, Sarah, just means the world, especially we had the honor to meet in DC. And I got to finally see you speak live, and that was not just life-changing for me, but you know, sitting there, I wanted to jump up and uh hug you. And I didn't want you to get I would have been thrown out, so we didn't do that. But I uh you know, we want to start today. Obviously, the book's incredible and it's making its rounds worldwide. Also, I know uh some exciting news. Uh hope we're okay to say, but we'll be on a panel together at the World Parkington Congress, uh, and talking about the different books and things and just gonna be exciting, but there's always uh so much more to come. As of right now, though, there's something even more important, which is policy. But before we start that journey, I want to thank you for your service, of course, and friendship, but also everybody listening. Uh, we want to say hello to the veterans out there. Um Sarah's leading the way too with that. We would need a 12-hour show, so we'll stick to the topics. And I was wondering what uh engaged you, encouraged you to stand up in a way and fight for so many in the community, which you've been doing for many years now.

SPEAKER_01 3:02

Uh yes, I never expected I would be someone who took on this role. I'm very much an introvert, but once I realized how much needed to be said, um I became very passionate about making sure that message got out. Uh I really struggled my first year after my uh Parkinson's diagnosis because I pictured a future based upon what I had learned about Parkinson's in medical school and that awful diagram of the hunched-over old man who gets shorter and into a hunched over and into a wheelchair. And when I was imagining a life of decline, that's what happened. Um, but I was super fortunate to be enrolled in a research study at Cleveland Clinic, um, studying the effects of cycling, and it was really a lifeline for me. And sh like I felt like I was coming back to life. Um, I ended up going on to finish Iron Man Hawaii, Boston Marathon, and ran in the Paralympic trials. And um, as part of that, I just really wanted to get the message out there that it's really important for us to set big goals and take small steps toward them every day. Um, because when we imagine a future of possibility, that becomes reality. And what we imagine for our futures is very much a self-fulfilling prophecy. And so when we imagine a future of disability and decline, we're taking steps to prepare for that rather than taking steps to live fully today. And so that's my one of my big messages I want to get out to both uh people with Parkinson's, but also our care partners and the physicians and medical community because I feel like so many people focus on the decline rather than helping people live their best lives today.

SPEAKER_00 4:28

Thanks. And just so you know, you might know already, but on some of the tougher days I have, still struggling six years later, losing my mother, when I see a text or an email or just a message from you, it really does motivate me to realize I can't give up because we still have work to do. But knowing someone like you is leading the way, and we're honored to be by your side just pushes me to never give up. So thank you.

SPEAKER_02 4:50

Thank you. Absolutely. Thank you for sharing that. Um, Sarah, you were recently appointed to the National Plan Council. Um, tell us that moment that you walk us through that moment, the moment you found out as well. What as well, what is what does it mean to you um as we progress this bill, this long now.

SPEAKER_01 5:09

Um finally, almost two years later, we're finally getting somewhere. So yeah, it's a little bit frustrating that it's taken this long to get somewhere. And I'm hoping that we can start making doing some things that will have impact and make change. Um, yeah, I happened to be on the phone trying to wire money to the publisher, my the printer of my book when the email came across. I was like, oh my gosh, oh my gosh, I gotta mess this up, but it all turned out okay. Um, but um yeah, no, I was super excited. I was very kind of surprised at the opportunity. I know there were so many super qualified and incredible people who who applied and were nominated for that position. And so I feel it's a huge honor and I hope that I can live up to the expectation and and help uh advance and make life better for all of us and our families. Absolutely.

SPEAKER_02 5:55

No, I think um you are aptly positioned to speak not only as a veteran, a physician, and a person with Parkinson's, your perspectives are gonna add immense value on the council, and we're excited to see all you all accomplish together. So yeah, I'm looking forward to that as well.

SPEAKER_00 6:13

I was really happy when I saw you announced it. I don't know if you can tell us anything.

SPEAKER_01 6:17

I know some of us is top secret, but is there anything there's not I think I there's I don't know that there's really anything new. I've they've started to work on some dates for us to have meetings. Um, so that's some progress. Um, but not not I don't really have anything new or interesting to share at this point.

SPEAKER_00 6:34

I almost feel like on this show we need a ta a ticker. I think it's called where they have a news flash anytime sour, right? That's what only the things were allowed. But it's really again great to know that at least somebody we know is on will be representing this all. So thank you.

SPEAKER_01 6:48

Thank you.

SPEAKER_00 6:49

One area we wanted to touch today, at least uh on is you know, I we say this every show, which is just fascinating and exciting. Like you said, you know, federal legislation the first time is just two years ago. We're in a time I feel it's part of literal history. So it's an honor to be a part of that. We're making such incredible groundbreaking changes and things to come, especially now with you also making a huge impact on that committee or council. What policy changes, though, at the state and federal level do you believe would have the greatest impact on improving access for care and support services for those individuals living with Parkinson today?

SPEAKER_01 7:28

Yeah, I think there's a huge, huge area for impact in that area. Um I think a lot of people aren't getting diagnosed, are taking months and sometimes years to get diagnosed with Parkinson's after they start having symptoms because that that stereotype is still out there, that it's an older man's disease. And so people who don't fit that stereotype are taking a lot longer to get diagnosed and to begin treatment. And so I think one of the biggest, highest impact things that we could do is to really work towards educating our primary care physicians and nurse practitioners more about Parkinson's, how to recognize it early, and that what the guidelines are currently are as far as starting treatment and medication early. Right now, if somebody gets diagnosed, you're there's you know, if their primary care physician or nurse practitioner or PA suspects something, they'll refer that person to a neurologist. And then they'll, you know, they'll wait six months maybe to see the neurologist. And then, oh, yes, you it looks like you have Parkinson's, but let's send you to the movement disorder specialist, another few months go by. And so some can take up to a year or sometimes for somebody to get diagnosed. When in reality, it's a very the the beginning of the treatment is a very simple, straightforward thing that could be initiated a lot sooner by our primary care providers and free up our movement disorder specialists for the people who are more complex or more complicated and have not done well with those initial standard treatments. When we look at diabetes is an excellent example, um, you know, it, you know, back in the day, somebody would get diagnosed with diabetes and they'd get referred to an endocrinologist for specialized care. Now, most of that treatment is happening in primary care because primary care physicians are trained and are confident in their ability to manage that. They've set up community programs, diabetes education programs right away at the primary care level to get people educated. Um, I think, you know, the things that benefit somebody newly parkin uh diagnosed with Parkinson's the most aren't something that physicians need to be spending their time on. It's something that I guess um, you know, community support, PD 101 classes, sending groups of newly diagnosed people, bringing them together and letting setting them down and kind of and explaining to them what it means and let them kind of talk amongst each other and realize that they're not alone in all of this. And things like that have such huge, huge impact. But the way our system is set up, there's no funding to support those kinds of things. And so they're not happening. Um, it's it's very frustrating to see the things that make the biggest impact don't really cost that much, but there's nobody paying for them and or who's willing to pay for them. So it ends up being philanthropic organizations, nonprofits, who end up putting together, you know, you know, support groups and exercise programs when that that stuff has such huge, huge impact that I feel like it should be more supported as part of medical essential medical care, like diabetes education is for somebody who gets diagnosed. Um so I think there's so much room to to gain in that way as far as moving the diagnosis sooner by educating our primary care providers and you know, making sure that they know it's okay to, you know, if their person's having symptoms, go ahead and start Cinemet right away. You know, get them feeling better and get them connected. Don't make them wait six months to go see a specialist because all that is is delays, you know, regression. And during that time, those people are going home and searching the internet and finding the worst possible of everything. And they're so they end up on this, you know, continuous decline when in reality it would be so easy to get them connected earlier and on an upward trajectory. And so I feel strongly that that would be, you know, very low-hanging fruit of something that could be done to one, improve access to care. Um, because if you're able to get more people being cared for at the primary care level, that frees up our movement disorder specialists for the more complicated um people who are maybe more advanced or they're not responding to traditional treatment. Um, um and it it frees them up in their appointments for the for the people that are more complex that could benefit from from their expertise as well.

SPEAKER_00 11:33

That's great. I even look back on my mother, and we don't even know, to be honest, how long she knew she had Parkinson's. We think it I thought it was 15 years, and I was told no, it was 18, but who knows even beyond that, if she was told the right uh information how to treat it. And um, you know, looking forward, I hope that these uh areas as you bring them up will make a big difference for those battling today and tomorrow.

SPEAKER_02 11:58

I couldn't agree. I I was probably gonna nod myself right out of my chair because I'm like, yes, to everything you were saying. Um, my dad was probably symptomatic 10 years prior to diagnosis, and everything that you described was his reality in terms of, you know, having a symptom here and there, but no one could quite piece them all together as a Parkinson's diagnosis. And neither could we, not having known a lot about the disease and only assuming um it's a tremor, which he did not have. We all thought, you know, it's Parkinson's is synonymous with a tremor. If you don't have it, we don't really know what's going on, right? So there were so many question marks. So I I cannot agree with you, Mark, more in terms of foundational um expertise that we can give to the nurse practitioners, we can give to the general neurologist to kind of pinpoint a little sooner and get patients feeling on track a little bit sooner, feeling a little bit better and having, you know, kind of a better understanding a lot quicker as to what's going on. And of course, that kind of dovetailed into us starting Power Burkinsons because you said the nonprofits have to fill the gap. So because he was a little bit alone and unsure and we didn't really have a lot of resources right here outside of Richmond, we created Power Burkinson's eight years ago because we wanted to fill that gap with exercise support, community, all the things it takes to live well with the disease. So um you wrapped everything up so well. And what you spoke of is, I think, a lot representative of a lot of people's experience, not just my dad's, et cetera. I think it's um a big issue and one that um, you know, we're we're excited to watch you and those folks who are implementing the now law um to to really solve and crack. So thank you. Thank you. Yeah. Um, I wanted to jump in um as both a physician and someone living with Parkinson's, how do you think current health care policy falls short in addressing the long-term, day-to-day realities of patients? So and and what specific changes would you prioritize to better support quality of life over the disease um trajectory?

SPEAKER_01 13:59

Right. I think we need to start looking as at Parkinson's and Parkinson's care as more of a whole person approach rather than just managing symptoms and medications. I think a lot of people go to the neurologists and they talk about what medications we are on and what do I need to adjust. But there's so much more to living well with Parkinson's. Uh the Movement Disorder Society recently published a paper in October about the the wellness pillars for living well with Parkinson's. So things like um exercise, nutrition, stress management, having a purpose in life, uh, managing stress, nutrition. I there's a I I think I'm forgetting something. Um, but anyways, but when you improve one, the others become stronger. Or if one pillar is weak, the others suffer as well. Sleep was another one there as well. Um, but so helping people understand that living well with Parkinson's isn't just taking your medication and trying to go to an exercise class. It's it's a full whole person approach that takes a lot of different uh angles and a lot of support. Uh and right now that support is falling, seems to be a lot of on the movement disorder specialists who are overworked and have way too many patients and don't have time to or the energy to talk to every patient about all of those things. But it doesn't need to be an MD or a DO who does that. It can be a social worker or some just somebody trained in Parkinson's wellness that can take on that role of educating about how to live well with the disease from a whole person standpoint. Um, I think the VA and their system, uh their Padrix, where they have a whole whole person team approach, uh where a lot of places at the major padrics, um, when somebody comes in, they're they they on that same first day appointment, they often will meet with mental health providers, social um physical therapy, occupational therapy, potentially speech therapy from the get-go. And they they get plugged into that entire team right away. And I think a lot of other of other, I mean, just the way the VA is set up, they're set up to do that. But I mean, that type costs a lot of money and a lot of time. And so it's unfortunately most other places, there are other places that are doing it, but um it's not a widespread um as it should be. Thank you.

SPEAKER_00 16:13

Well, as we uh spoke about and all know when we went to the policy, it's my second time now, but what an impact it made to have advocates throughout the country and one building the Capitol, uh, whether or not one state or city might not have made it then, I believe everyone together to uh that weekend. And really the work starts now, and after we got home, uh we always mention because not just the people who were in the Capitol that day, but it's everyone around our country to make an impact. Uh how can advocates, uh healthcare professionals, families all work together to influence lawmakers and prioritize the Parkinson's research funding and patient uh centered policy initiatives that we are all hoping will come very soon.

SPEAKER_01 16:57

So so yeah, so I mean there's a there's so many things. Sorry, my dog is freaking out in the background.

SPEAKER_00 17:03

We're animal friendly.

SPEAKER_01 17:04

Yeah, yes, an animal-friendly show. Anyway, so um, yeah, there's so many things that can be done um from a policy standpoint and so many different angles. And so I think it's really important, and that comes with us having a purpose. And I think so. That's such an important part of doing well with Parkinson's is finding your purpose. And so there's so many roles for different advocates. I don't think we can have too many advocates in our Parkinson's community. And so I think, you know, as part of our wellness plan, encouraging people how to advocate and find a piece of that puzzle that they are passionate for and focus on that and and we have some people overhead, you know, over the top who are um kind of help coordinating the effort and making sure that we're not, you know, too disjointed. But there's so much energy and passion within the Parkinson's community, and it does help us do better to have a purpose. And and so I think, you know, there's so you know, there's definitely a lot of interest and a lot of advocates. So I think just trying to, you know, keep us all organized and all, you know, not hurting a bunch of cats in 20 different directions, but keep us focused on on a common goal is is a little bit of a challenge. But we all kind of we all want the same thing in the end, and that is to live better and work towards a cure.

SPEAKER_02 18:16

Yeah. I do think things like the forum and kind of our our bigger foundations are starting to do a great job in tying us all together. I think we're seeing the the result of that through more awareness, policy action, et cetera. So I think we're starting to really collect um over the last couple of years, and it's exciting to see us kind of swimming, all we're all rowing in the same direction. So um it's it's great to see.

SPEAKER_00 18:44

And even the even the show, uh, you know, this one, I don't think this would be even something that we talked about or wanted two years ago. So this uh hopefully everyone listening will share this and support Sarah, but also uh see how important policy is, but it's not going to move forward unless we have everybody at the seat at the table.

SPEAKER_02 19:02

Yeah. And just to dovetail on that, I think one of our goals with the show is just showing that advocacy and action and and kind of taking doing your part and taking action is doable and tangible and kind of breaking it down for folks so it becomes something that doesn't seem daunting and something that we can all, you know, to do a little part that fits uh with our passion and our skills. So um Sarah, I wanted to ask, given your experience in military medicine and of course as an endurance athlete, what policy reforms do you believe are needed uh to improve access to early diagnosis as we discuss specialized care and supportive services for Parkinson's patients across diverse populations, including veterans? Right.

SPEAKER_01 19:48

So I mean, I think everything that we can do to raise awareness about these issues, like from every angle. And so uh I was talking with um Dr. Indus Subermanian, who's a uh a movement disorder specialist in LA yesterday, and we were talking about the show shrinking, and you know, she wanted my perspective on it. And I said, Oh, I think it's great. You know, we're we're raising awareness. But she's like, but there's no women with Parkinson's, or there's no, you know, it's all you know, it's still older white men. And I was like, Oh, that's you know, I hadn't really thought of that. I was just happy to see that it was being talked about. But you know, situations like that might be an opportunity to help bring some of that into the fold. Like maybe if they showed a support group with, you know, a very diverse group of people with Parkinson's, just to get that out into the more mainstream ideas of what Parkinson's is. So I'm happy to see it, you know, being talked about more in the media and in television. And um, so I I think that's one thing that we can do to help raise early awareness, both within our our society and also, but also um our healthcare providers as well, um, because it's still very much thought of as you know, I get told, you don't look like you have Parkinson's. And it's like, well, I wish I didn't, but here I am. Um, and I and I think another thing I'm very passionate about is work, whatever we can do to prevent this disease. That our money is much, much better spent finding ways to prevent this than than help, you know, than anything. You know, if the incidence of Parkinson's continues to rise drastically, and we know that there are certain toxins such as paraquat and TCE that increase someone's risks for developing this disease, and yet we are still using those chemicals in our country. And so I think, you know, the efforts to ban those are critical. Um, very frustrated that DOD has it, you know, with the TCE ban, the DOD has a 10-year phase out for that, for TCE, um, which is a chemical that I I was exposed to when I worked at Kelly Air Force Base um in the late 90s. And so um, yeah, it's frustrating to me to see, you know, that doesn't seem to be taken seriously and that the the needs of industry and that are using those chemicals and their financial well being, they're you're not looking at the enormous cost of every single person with parking that. Parkinson's as a result of that. And I think, you know, you have you have, I think probably one of the better ways to approach that is similar to the way we approach cigarettes. You know, you don't make them illegal, but you tax them so heavily that anybody with any common sense chooses a safer alternative. And so, you know, you know, I don't it's it's really hard to get a chemical banned or people like try to jump through hoops to use whatever they think is the best chemical for their crops. Um, but if you make that the most expensive, ridiculously um inconvenient um thing for them to get and have have a safer alternative that is more affordable, maybe subsidized somehow, spend the money on subsidizing that to make it affordable rather than trying to keep the other stuff out. Um, you know, I think there's some other approaches that may be more effective. Um, people don't like to be told not to use something, but if you there's a financial reason to do something, um, that seems to resonate with people better in a lot of cases, and from my perspective, anyhow. So absolutely. Yeah.

SPEAKER_00 22:58

And that's one of the reasons I'm still fighting, although I can't bring my mother back. There's no doubt it was not because of the environment. And I'm in South Florida specifically. We have golf courses on every block. There's one near my mother's house, the the mold in the home and the uh things they sprayed back then. They used to bomb the homes, you know, not literally, but with the uh uh, you know, different types of bug killer and bug spray, and they don't even allow people today in the house, but it's too late because a lot of those homes were built, you know, 20, 30 years ago, and they still have those toxins in them. And it's just shocking and frustrating for even people who lost their battle that we don't make uh take faster action. But again, knowing that you Sarah and heading uh at least on the council makes me uh be able to sleep a little bit more, even though I don't sleep anyway. But I'm really uh we're grateful for again all the work you've done. I hope everyone will support the new book. I'm honored that I have a copy. I've been able to read it, share it. Some of my own close friends are in there. Send a love to Steve Squires too. And uh hope to see you again uh very soon at the next uh at the World Park in the comments. I hope everyone out there will join us there in Arizona. We'll definitely film something for this podcast. I hope I'll call Margaret and we'll do something from there live uh as we wrap up today, because again, uh the show really never ends. Uh, we have to continue to advocate from our homes. I mean, there's no price, it's free and it's really priceless in a way to help save lives and our future, our children, those like Sarah battling today. It means so much to all of us in our heart. But Sarah, I was wondering if you could uh leave a message today or what message of encouragement can you leave for the Parkinson's community who's hopefully watching this, sharing this, and supporting you every step of the way.

SPEAKER_01 24:43

I mean, I think the Parkinson's community has been the most amazing part of this journey for me. And so, but it's so frustrating for me to meet people who have not even yet connected with anybody else from the Parkinson's community, people who tell me, Oh, you're the first person I've talked to with Parkinson's. I'm like, what? That has been the most helpful thing for me. And so, you know, as a Parkinson's community, anything we can do to reach out and and and help, help collect others from from who are suffering alone, um, I think is can have a huge impact and benefit. And by sharing our stories and getting those out there, I think it makes it easier for others to feel more comfortable being open with their diagnosis within their communities as well. And so, whatever I feel like anytime somebody shares their story, they're making it easier for the next person to help break the stigma or whatever they fear about telling their family or their coworkers or even admitting to themselves that they have Parkinson's. And so, you know, I think the more we speak up, the the easier it makes it for everyone.

SPEAKER_00 25:39

Thanks for supporting us, the show, and me over the years. So again, not at night, unfortunately. I don't probably lose all the sleep because I'm so wish my mother was here to, you know, speak to you. Because I think if you two had a FaceTime, she would have smiled and she felt really alone. Our whole family didn't know anyone else. We didn't even know what there was a disease part of the word Parkinson disease. But today I you know, I'm surrounded by individuals I consider family like you, and I wouldn't get through it without you. So thank you. I wanted to send the show to Margaret to wrap up.

SPEAKER_02 26:10

Sarah, we just wanted to thank you so much for sharing your time with us. And you know, as you shared some of your early stories about participating in studies at the Cleveland Clinic and ultimately um becoming an endurance athlete, I think you're a prime example of how action can become passion and how you really turn your diagnosis into an actual action-oriented mindset and um one that, like you said, collects those around you. So our force just only grows bigger. Um, and I'm so thankful that you took the time to share that story and and you know, as we talked about, other listeners really hopefully being inspired and doing the same in their locations as well. So thank you so much. Keep doing everything you're doing, and we're glad to have you as one of the leaders in in this fight.

SPEAKER_01 26:54

Thank you so much for having me, and thank you to the Parkinson's community and everybody else who's out there advocating and supporting us.

SPEAKER_00 27:01

Thank you, Sarah, and thanks, Margaret. It's been another honor to be uh be here with you today. And we again have so many more to come because we still have work to be done. But this has been uh another episode of the Parkinson's Policy Podcast. Want to thank our audience. Please share the show. Please, more importantly, reach out to your representatives and get a copy also Sarah's book. But on the Parkinson's Policy Podcast, and there it is, we need the socks next time, where we advocate together to raise awareness and advance meaningful policy for the Parkinson's community. And again, this show wouldn't be successful if it wasn't for all of you and the hard work uh behind the scenes with Adam and all Carl over Parkinson's Margaret. Uh, again, it's an honor to be with you today and look forward to many more to come.