A Walk in the “Parkinson’s” with Author Annmarie O’Connor

Episode Transcript

Dr. Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa,

Dr. Peters:
And I am Dr. Katy Peters, and this is The Brain & Life Podcast. In New York City, Dr. Correa, you are in the heart of fashion and style, do you consider yourself a fashionista?

Dr. Correa:
That's quite a question. I would not necessarily say so. I think the heart of my fashion is the inspiration for my wife helping me pick out clothes and shop with me. I'm definitely inspired by a certain look. I would not at all equate myself to George Clooney, but definitely, that kind of style and look professionally. When I was at Howard University College of Medicine, I remember being really inspired and really taken with the professional look of one of the surgeons I trained under, Dr. Wayne Frederick, later became the president, but he... the president of the university, not the president. Many people would be like, "Wait, I don't know that name." But yeah, he never showed up in scrubs unless he was in the OR.
He did rounds in a suit, and really well-dressed in a way that he felt clean and comfortable, and really presented himself professionally, it helped me form a clear sense of just being the Shelby Medical student, just trying to throw together clothes to show up on time of the importance of a professional physician image, and that importance of that image, not just to your own professional ideal, but also to the patients and families that you work with. But in New York City, I do love seeing the variety of fashion and style on the streets, it's endless fascination people watching. In the context of fashion, it's also amazing to learn from our community about the work and the importance of adaptive and inclusive fashion so that we can all show out our own expression of self.
And for those interested, we've had a few guests in the past on the podcast who are adaptive fashion advocates, including a recent episode with Sarah Todd Hammer and a past episode with Paula Carozzo, and in the magazine and website online, you can find many past articles talking some more about adaptive fashion for the community living with neurologic conditions.

Dr. Peters:
So we've actually had some fashionistas. I think that Dr. Rick Bedlack, who's often our expert-

Dr. Correa:
That's right.

Dr. Peters:
... on ALS, is quite a fashionista. And I love that you pointed out who you remember in your medical training that had that maybe a little bit more style. I would say for me, it was Dr. Sandra Horning who would always have Ferragamos and always looked perfect and fancy, and she did that with seeing a myriad of patients on the inpatient service. So it's always impressive, and we need people in the fashion industry to help us with that. And I think it's also a group of people that are interested in making things more accessible to people, making fashion more accessible, and that really typifies the guests that we had today. Her name is Annmarie O'Connor, she comes to us from Ireland, and she's a highly accomplished fashion stylist and author. And she actually authored a book that actually helps us with our style, and finding comfort in your style for all.
And I particularly enjoyed her book, the Happy Closet. I think we could all use some of this, the details, how to declutter your closet, and really come to happiness and peace with what your style is and what those clothes represent. She's also on TikTok, and we talked a lot about social media, about how with fashion, Instagram and pictures is so important. But she uses TikTok with content, not really on fashion, but rather her journey with early onset Parkinson's disease. Her account name on TikTok is @awalkintheparkinson's, and she strives to deliver really hopeful content on living with early onset Parkinson's disease. Some of our discussion also highlights that we can often have misconceptions about diseases such as Parkinson's or Alzheimer's that we think it only can impact elderly people, when in fact, it can occur at a younger age. So we really highlight this when we talk to our expert, Dr. Mehanna, who's an expert in early onset Parkinson's disease.
Hello and welcome, everybody, to the Brain & Life Podcast. I am very excited to have our next guest. It is Annmarie O'Connor, she's an author, fashion editor, TikTok creator, and also a Parkinson's disease advocate. She's a bestselling author and fashion editor, and her books, including one that I just checked out called The Happy Closet and the Happy Medium are really awesome and great reads. Her editorial and styling work has appeared in publications such as The Irish Examiner, the Sunday Times Style magazine, the Irish Times, the Irish Tatler, Image, and The Gloss. She has also styled for London Fashion Week, the Voice of Ireland, and clients like LVMH, Harvey Nichols, Brown Thomas, and BT2. She also shares her journey with Parkinson's disease. So Annemarie, welcome to the Brain & Life Podcast.

Annmarie O'Connor:
Thank you so much for having me.

Dr. Peters:
So I gave a tiny introduction about you, can you just tell us more about yourself and where you're joining us from?

Annmarie O'Connor:
Yeah, I'm joining you from Cork, in the very bottom, the south of Ireland. I live here... I live on my own, but my family all live in Ireland at the moment. We actually grew up in New York, but my parents... my mother's from Ireland and my father's first generation American. And after my father had passed, my mother moved... my mother and my family moved back to Ireland. So I was about 12 at the time. And so my sisters live in Galway predominantly, and I have a sister who lives in Dublin, and I'm flying the flag for Cork.

Dr. Peters:
That's wonderful. I love Cork. So can you tell us a little more about being an author and being a fashion editor? I think it sounds so exciting.

Annmarie O'Connor:
Yeah, it's funny because I had always worked adjacent to what I wanted to do for several years. It was hard enough to break into the industry, I grew up in the '90s, and so it was pre-social media. And I think social media really helped me because I had started a blog. I'd been living in London at the time, working in TV and radio, but working in sponsorship and promotions, and doing some freelance writing on the side, but really, I wanted to be a writer full time. So I moved back to Ireland and I made the decision that I was going to go freelance. And whilst I was doing some pieces for different magazines that may not be published for two months, I needed something to do. And I was just such an avid fashion reader and consumer of fashion that I started my own fashion blog, and I thought, "Well, this will keep me active and keep the creative juices flowing."
And it kind of took on a life of its own. And that became how I got well established in the industry, because I had proven myself in the blogging sphere as it were. And it was very new at the time, it was 2006, 2007, around that. The height of sophistication was putting up a photo. It was so different to... nobody talked about monetization or anything like that, it was just slapping up a post and going about your day, it wasn't like metrics or anything like that. So with the styling side of things, that's something I fell into. To be perfectly honest, I was approached by a TV company, and they said, "You've styled before, haven't you?" And I was like, "Yeah, yeah." I just thought the worst that can happen is I'll get found out. And I had enough faith in my ability, I thought, "I can do this." And I did it. And I became a full-time TV stylist for about two years working on different daytime TV shows... or actually, the same daytime TV show, they changed the name.
And then I made connections through the industry. And one of my dear friends, Joanne Hynes, who's a designer, I styled her fashion show at London Fashion Week. And so I had all these amazing opportunities, but the Irish Examiner has always been my bread and butter. So I've been their fashion editor, although I'm a freelancer, I feel like I'm full-time. So I've worked with them since 2008, 2009, around that, and they were the ones who sent me to London and Paris Fashion Week. If it wasn't for them-

Dr. Peters:
Oh, my gosh.

Annmarie O'Connor:
... I wouldn't have had all these opportunities. So I'm so grateful to all the people along the way who took a chance on me and allowed me to get my... for somebody who is completely new to it, relative to my peers, it was a leap of faith, really. And I'm just glad that they took the chance on me because I wouldn't be where I am now were it not for people who helped me along the way.

Dr. Peters:
That is so great. We often talk about having mentors and champions and people that can be your advocate. So it's so great that you had those people behind you to help you. So I recently checked out your book, the Happy Closet. I have some bad closets in my house or some challenging closets. I'm in my office right now, I'm looking at one of them, and I was like, "I really need to clean that out." But can you tell us a little bit more about that book? What inspired you to write it?

Annmarie O'Connor:
Yeah. I was inspired to write it because, at the time, I was working, like I said, on TV, and I was cleaning out people's closets as items that we had, like fashion items on TV, and some of them were celebrities or very well-known people in Ireland, and others were people that had called in and wanted to have their closets cleaned out, that sort of thing. And so I had acquired quite a lot of experience in doing this, but I was also the biggest defender because I was the classic impulse buyer, I was a closet full of clothes and nothing to wear. So my closet looked like it belonged to a circus performer. And I was counting, I was like, "I have 27 dresses that could all be well-worn to very different events with different dress codes, but I don't actually have a pair of leggings or jeans to go to the shop and get a liter of milk in the morning on Saturday."
So I went about... instead of doing what I was always doing was the buy, and then I get bored, and then I put clothes into the charity bin, and then I'd repeat the process over again. So I did a lot of studies, psychological studies as to why... I wanted to figure out the why behind how we shop, why we buy certain things, and how we can actually get to that place where our closet represents a person that we are today, not the person maybe who hung on to clothes, maybe that represented them at a time in their life that was sacred or that was really special, and maybe now, they've moved on a few years later. And everyone goes through an identity crisis, and I think that's when we hold onto things. So there's a scale between past and present... past and future, I should say.
So you have somebody who lives in the past, the other person who is dressing their future self, that person who lives in initially somewhere and gets dressed up for the passeggiata, and actually, they live in the suburbs. So it's okay to have a bit of that sparkle, but when your whole wardrobe is geared for another person's life, then that's not really helping you. So we want to be somewhere in the middle, which is the present where mindfulness lives, which is always the most difficult.

Dr. Peters:
I agree.

Annmarie O'Connor:
Yeah. And it's an ongoing... even for me, since I got Parkinson's, my wardrobe has changed, my needs have changed, my wardrobe changed, and I found myself looking... and I turned 50, and then I was thinking, "Oh, my God." So there was a lot of change. And my wardrobe is just slowly... it's like I think you have to be... give yourself some grace that it's not always going to be perfect, but life is messy, and so long as you have a grasp on where it is you want to go with this and that you can clean out as many of the bad habits as you can, then there's always room for a splurge here and there. It's okay. That's what I tell myself.

Dr. Peters:
I just splurged yesterday on this nice little necklace that I got, but-

Annmarie O'Connor:
Oh, it's beautiful.

Dr. Peters:
Yeah. But you mentioned Parkinson's disease, and it is one of the reasons why we're chatting today is because you do have an upcoming book called Twitch. So can you tell us more about that book and also about your journey with Parkinson's?

Annmarie O'Connor:
Sure. Twitch is my memoir, my life with Parkinson's. It's basically... what I say in Twitch is... I'm just trying to think now, so I'm just going to try and find where it lives in my brain. When something falls apart, I say in the book, whether it's your relationship, your career, or your health, all rubble looks the same, it's our humanity that connects us and our stories that help us heal. So what I'm hoping in Twitch, even though it's the story about my life with Parkinson's, is that it will resonate on some level with everyone regardless of what they're going through. Because we all have some version of the twitch, the twitch was the first thing that I knew that something was wrong. So we always get that little person on our shoulder who says, "Pay attention," and sometimes we don't listen, and then the noise gets louder, and louder, and louder until we're forced to reckon with it.
And often by that stage, it's too late. Like they say with Parkinson's, by the time that it appears, it's a bit like an iceberg, by the time the symptoms show, you may have had it for several years and not even known it. So my idea with Twitch was to share my journey. But it also was a bit of a surprise to me because in the book, there are a lot of things, without giving away any spoilers, that I discovered about myself that I was in denial about. So I think that sometimes, when you uncover... or you go through something life-changing like this, it changes all aspects of your life, not just your health, it changes your relationships, it changes your work, it changes every single thing. You'd be surprised just how much it shakes you to your core. Because I thought when I was diagnosed, I was laboring under the misapprehension, a lot of it was probably survival in my own head thinking, "I just take my medication, I should be fine for the next couple of years."
Until they say typically, after about five years, it's a bit of a honeymoon period, that's when you might notice that you'll have to make adjustments. And I thought, "If I can stave this off for five years, I can make enough money and then I can worry about it." But life doesn't work out that way, and that's how the book shows me, or it shows the reader anyhow, how within about two weeks, I was experiencing things like dyskinesia, which are involuntary movements in the shoulder that are a result of the medication, which it's typically not experienced for a couple of years but what's typical. So I'm early onset, I was diagnosed in 2021 December 16th, but I experienced my first symptoms in September 2020.
There was a lift in lockdown restrictions in Ireland. We had quite very strict lockdown restrictions because we're such a small country, and there was such a pressure on the health system that it was a necessity really. So there was a lift in lockdown restrictions, and I took the opportunity because we were allowed... at that stage, because we weren't frontline workers, we couldn't work, we were allowed to work. And so I was like, "Amazing." I worked on a photo shoot. I woke up one morning and I had a pain in my arm, and I assumed it was from carrying the heavy bags, and I thought nothing of it. I took two aspirin, I went about my day. A few weeks later, it was just getting progressively worse, the pain. And I was lying on my bed and I was looking up the ceiling and I was thinking to myself, "I couldn't unclasp my bra to take a shower." And I was in so much pain, I was crying, I was thinking, "Do I cut my bra off or do I shower with it on?"

Dr. Peters:
Oh, my gosh.

Annmarie O'Connor:
Well, I paid a lot for this bra and it's moisture-wicking, so maybe I should just shower with it on. So I'm having this debate with myself, and then I noticed it, it was like a twitch in my finger. It was like... I say in the book, "It's like the flutter of a butterfly's wing." It was practically imperceptible at the time, but it wasn't, it was noticeable, and I noticed it. And I noticed it over the next couple of weeks, in particular, as it started to grow in amplitude and became steady shake. And because we weren't allowed to see our GPs at the time, I called my sister, and my sister is funny because she starts every sentence with, "I'm no medic, but..." She's my oldest sister. So your oldest sister always thinks they know everything.
But this stood me in good stead because I went to the source, and I always call her jokingly, the wise elder, and she goes, "Look, it's probably just a pinch nerve. Please, whatever you do, don't stress about it because you're just going to make it worse." Knowing I lived alone, she was saying, "Just promise me that you'll go see your GP once restriction's lifted." That was November 2020, and it was March before we were allowed to see our doctors.

Dr. Peters:
Oh, my gosh.

Annmarie O'Connor:
Yeah. So at this stage, it was like the pain had subsided, but the shake got worse. So between March 2020 and December... sorry, between March 2021 and December 2021, when I was diagnosed, I had three MRIs, one on my shoulder, one on my neck and spine, and one on my brain, which all came back clear. And during this period of time, I had an increase in symptoms. So I was also experiencing perimenopause. So I kept lumping everything on perimenopause going, fatigue, perimenopause. Restlessness, perimenopause. Hair falling out, perimenopause.

Dr. Peters:
I know that. Yes.

Annmarie O'Connor:
Exactly. Night sweats, perimenopause. There's such a crossover, which I didn't realize between perimenopause for women and Parkinson's, that it's very easy bar the tremor, which was the motor symptom, to confuse the two. And although Parkinson's was bought up as it could be anything from a trap nerve to Parkinson's, I never tabled it in my own head. I remember after the trap nerve was dismissed because of the shoulder MRI came back clear, I kept thinking that it was some mystery that would somehow resolve itself, I wasn't kind of engaging with the fact. So I had a tremor, I had restless legs, I was dragging my leg, it got really heavy. This is all on my right-hand side. My sister was saying to me, "Why are you dragging your leg?" And if it weren't for my sister who would come and visit me... because I lived alone, it's like living in an echo chamber. So you need to have the external set of eyes to say, "Wait, this isn't right." And she kept saying, "Your shake is getting worse, it's getting more jerky now," my right arm wasn't swinging. So nothing was adding up.
So at this stage, when my doctor called me in December to tell me that the brain scan came out clear, I had said to her, "Look, doctor, in the past two weeks, things have gotten a bit kind of weird, like my handwriting got really small." I was writing Christmas cards, and they looked more like ransom notes. And I was like, "Well, Auntie Mary isn't getting a card this year." I literally had all the stamps and cards bought and they got thrown in the bin. And my hand started cupping, which gave me pause. So I wasn't able to apply makeup, brush my teeth very well, open up a bag of coffee without espresso going halfway across the kitchen, which sounds kind of silly, like, "Oh, that's not much," but it's enough to set the alarm bells. And she said, "This is just not right, we've got to get this seen too."
So she sent me to Cork University Hospital's acute medical unit, and she said, "You'll be seen at 9:00 AM by a nurse and they'll take your vitals, et cetera. You'll be seen by a couple of doctors and maybe a neurologist, by the end of the day, by about 4:00 o'clock, you should have some sort of determination on what this is. We need to get to the bottom of this." So she was right, up to 4:00 o'clock, that's when I met the man who would be my consultant, and he went through the odyssey of my symptoms. After consulting with the various neurologists, he did a few tests with me that I would come to realize were tests to determine Parkinson's. And he said, "I'm sorry, you've got early onset Parkinson's." And I was like, "Excuse me?" It was the last thing I expected. So right now, I don't even have the words when I recall it, and he was like, "Please, take a seat."
And he's such a kind, empathetic man, and I'm forever grateful for his help because he really guided me at a time that I was lost. I had no road map, had no directions on the back of a packet, I didn't know Parkinson's from a kick in the head, all I knew about Parkinson's was that Michael J. Fox was diagnosed early onset Parkinson's when he was 29, and I assumed it was something that elderly men experienced, not women in their 40s. And when I started to realize that 18,000 people in Ireland have Parkinson's, 10 million people worldwide, one in six people in America... or one person every six minutes rather, is diagnosed with Parkinson's in the United States, I started to realize just how little information there is about Parkinson's. When I was diagnosed in 2021, there were, at the time, a reported 12,000 people with Parkinson's in Ireland. It's now 2025, and that number has increased to 18,000.

Dr. Peters:
Oh, wow.

Annmarie O'Connor:
So whether that's reporting... or better reporting or an increase... or more people coming forward, I think, to talk to their doctors and say, "Look, I've got these symptoms, I think it might be Parkinson's," and again, better education for GPs. I'm just so lucky that I had an incredibly intuitive GP who knew that something was wrong, and it was my consultant. When I said to him, I said, "Look, I understand everything that you've explained to me, but tell me why did my brain scan come back clear if I have Parkinson's?" And he says, "Well, Parkinson's lives a couple of millimeters below what an MRI brings up. That's why we have something called a DaTscan, which will determine... well, not so much, determine Parkinson's, but will rule out any Parkinson's mimics," so maybe essential tremor or something like that. So Parkinson's, of course, is a clinical diagnosis, but a DaTscan, if for no other reason, help me come to terms of the fact that I did have it. It was more like a rubber stamp on something that you're thinking, "Maybe they got it wrong."
Because that kept going through my head. I just kept thinking, "This can't be happening." It really takes a while for it to sink in. Like I said, I still was in denial. And my sisters, my mom... I always quote my mom, my mom said, "God, Annmarie, you're so Stoic." And then my sister Margaret said, "I don't think you were being very Stoic, I think you were in survival mode. I don't think you had actually dealt with it, so you were in shock." And I said, "Bingo! That's it." Because I had assumed that starting on three Sinemet tablets would be all I needed, not realizing that with Parkinson's, everyone's combination of symptoms is different. They call it the boutique disease because there are over 40 symptoms and no two people have the same combination. So thus the diagnoses and treatments are all the more challenging. So as a woman in perimenopause... and when you think about it, declining levels of estrogen eat into already low levels of dopamine. So you've got that to deal with.
And then the fact that your hormones are changing, and that you, as an individual, require an individual treatment. So it was my consultant who had said, "We're going to start you on this, and then we will tweak. And it's a question of some adjustments until we find the sweet spot." So for me, it took 14 months, and part of that was due to my own apprehension about taking something called a dopamine agonist. As an early onset and tremor dominant, that's where I fall in the Parkinson's sphere. Predominantly, tremors are my biggest problem. Sinemet or levodopa, which is the gold standard drug, otherwise known as Sinemet on the market, that isn't always enough to help people who are early onset tremor dominant because it can help with stiffness, slowness, rigidity, really good with that, not always that great if tremors are really, really problematic for you. But levodopa combined with the dopamine agonist tends to work really well. The problem with the dopamine agonist is that there's a one in six chance of developing an impulse control disorder, which can manifest in any form, from being obsessed with a hobby to hypersexuality, alcoholism, or shopping.
And I kept thinking, "Geez, as a fashion editor with like-

Dr. Peters:
I know.

Annmarie O'Connor:
Yeah, 20,000 euro worth of receipts from Brown Thomas laying around, I just had these visions of Gucci bags everywhere. And I was like... my consultant said, "No, Annmarie, it's not like that," he says, "it comes on slowly." But the issue in the past is people wouldn't have maybe, especially in Ireland, maybe in America as well, I don't know, the culture of being vocal about things and talking about things, especially something like hypersexuality or these things that are kind of hidden or shameful, instead of seeing it as a byproduct of the medication that you're on, that can be tweaked, or changed, or stopped, and that behavior can stop, as a result, people keep it to themselves, and then the problem of course escalates and gets worse because it grows in the dark.
So he said, "Look, so long as we have an open and honest conversation about things, things should be okay." And I kept it, I tried everything I could, and then at the very end, I had tried a treatment that was like diabetics where I could inject myself as and when I needed it. And I was not a candidate for the medication because it's scalable on a level of 1 to 10, I think, it's milligrams, I could be wrong, but 1 to 10, we'll call it 1 to 10, [inaudible 00:28:28] what the measurement is. But I didn't get past number one. They tried to get me on number two, and I felt like I had a hangover. I was dizzy, my blood pressure went down, and they said, "No, you can't do this."
And one of the nurses had said, "Look, Annmarie, don't worry." My biggest problem is my gut issue. And as we know, when you take a tablet and it has to go through your stomach into your small intestine, and then through the blood-brain axis, by the time it reaches your blood-brain axis, it's not really optimized. So it can be a bit perilous. And the biggest problem with Parkinson's, which I didn't realize, one of the pre-clinical symptoms is constipation. A lot of people have constipation-

Dr. Peters:
It's one of the most common symptoms before you ever develop any twitching.

Annmarie O'Connor:
Yeah, exactly. You could have it for years, years, and years, and then everything else comes along. And I did. And I always assume because my mom and my grandmother had it, that... my mom was saying, "Oh, look, Annmarie, you took it from our side of the family." So I was like, "I had real problems with it." So I was like, "Oh, my God, this all makes sense." And she said, "Look, if you've got a problem with your gut, there are transdermal patches." She said, "You can talk about it with your consultant." And I was like, "Great." When I got home, because I was so dismayed because I had prepared for this and I put all my hope onto this, I was going... it was January 2023, and I thought, "I'm going to start 2023 with a bang. 2022 is over." And then I was like... I was just hoping to wrap it up and get on with things.
And the thing with Parkinson's is you have to be patient because it takes its time, and it takes... it decides what direction it's going in. And you can't fight it, you have to work with it. It's almost like being Woo Way, all of a sudden, it's like, "My God, I have to learn how to be super patient with something that is literally kicking my butt." And it can be really challenging. So anyhow, I did a bit of research and I was like, "Oh, there is a patch," it's a dopamine agonist. But I just thought, "You know what? We're going to give it a try," and had the big conversation again with my nurse and consultant, they said, "Keep the corridors of communication open." And it just changed my life. Within 48 hours-

Dr. Peters:
I'm so glad.

Annmarie O'Connor:
I mean, it wasn't without... it killed my appetite for a while, it made me nauseous for about two weeks, but domperidone dealt with that. It was anti-nausea tablet, so it was okay. But on the whole... because we all have ups and downs, I'm still having some small little blips on the radar, that's okay. So long as it's a blip and it's not something major, you can deal with that because you can have your medication tweaked, or increased, or you can work with it. But it changed my life. So part of me was regretful that I didn't do something sooner. And then my best friend said to me, "You did the right thing. You did the small and steady, and you did it according to what you wanted. Because imagine if you just listened to somebody and it went totally wrong, and then you didn't have that advocacy."
She reinforced in me the importance of self-advocacy, which I had been talking about. But I had realized, "Oh, my gosh, there's no right or wrong way of doing Parkinson's, there's only what you think at that moment." And so long as you are working with clarity and you understand your why, then if it takes that long to get there, it takes that long to get there. I can look back now and say, "I took... not control, but I took an active interest in what was right for me at that time," and I think that's always stood me in good stead.

Dr. Peters:
And first of all, thank you for sharing all of that. I think that's such useful information to so many of our listeners. A lot of them may have Parkinson's disease, some of them are care partners of somebody with Parkinson's disease and sort of knowing your journey. And I think one of the things that really resonates is a point that you made was that every Parkinson's patient's journey is different. And sometimes, we have preconceived notions of like it's an elderly man that's going to get Parkinson's disease. But I remember a conversation with a colleague of mine, Katie Moore, who we actually interviewed on the Brain Life Podcast, and she's like, "You can go into a waiting room, it could be a waiting room for a Parkinson's disease clinic, but every patient is different. Everybody's going to have a different sequelae symptoms."
And I guess the thing that you really pointed out that I think is even more important to extend that is that everybody's treatment journey and to get to their path, to control their symptoms is also going to look different. So you need to have some patience and grace with yourself, but keep those communication lines completely open. And I know that one of the things that you do is, and we talked about this before we even started talking in the interviews, is sort of you post on TikTok, you sort of share your journey, and I think it's called A Walk in the Parkinson's, which I think is so great. I think it's a great name on TikTok. Can you tell us more about that experience, and maybe, what have you learned from your followers?

Annmarie O'Connor:
Yeah, A walk in the Parkinson's, I started officially in actually January of this year. So the name suggests a walk in the park. Parkinson's is not a walk in the park, but hopefully, this is a safe space where we can talk about it with tongue in cheek and-

Dr. Peters:
Absolutely.

Annmarie O'Connor:
Yeah, and it's a bit of levity for a day when things may not be so great. But my main reason for doing it was to communicate what I knew as an advocate in terms of information, and resources, and that I would not share what my treatment plan is. So I'll share if somebody asks me what my symptoms are, but that can change, and it has changed. So things like... I always caveat things by saying, "You need to contact your GP if you haven't seen a GP already, and get a referral for a neurologist or a movement specialist, depending on where you live in the world, and get that seen too professionally." Because at the end of the day, I am just a third party on a social media app. I can provide facts on... I can provide resources, I can provide a bit of information about my own journey, but I can't tell you what to do.
So I get some people who ask about family and saying, "My family aren't taking it very well," which is totally understandable, or they might have a question about something adjacent to Parkinson's and they're like, "I don't know what this is." So if somebody is asking for some sort of social support, I say, "Go to your local Parkinson's chapter, find out where that is, and you will find like-minded people who have gone through the same thing, and you'll get that level of support." Or the Michael J. Fox Foundation is wonderful for they have their buddy network, and you can meet someone online who could be that support system that you need. In particular, if you're living in a more isolated space, maybe somewhere that's more rural, or you may not have this kind of support system that a lot of... I'm lucky I have a massively big family, so I have all those people, but not everyone does. So just to be cognizant of that. And if it's anything that is worrying you about your health, it is like, "Please, go directly to the source."
Please go directly to the source because... and when it comes to medication, I'm always clear on saying, "Everyone's journey is different. Everyone's journey is different. I can't speak to that because I'm only speaking about my own experience." And I'm always so conscious that even when I wrote the book, I talked about my yellow tablets, I didn't give names of anything because I didn't want people to hang their hat on something and then go back to their doctor and say, "Well, Annmarie O'Connor said that was great, and I need to be on that." Because it's like, well, you're a different person altogether who has a different experience of the disease, so that may not be the case.
So I think a lot of the times, I spoke to different people just to get a third-party perspective on things. And a friend of mine that said to me, "You could be seen as a beacon of hope. So if somebody is in a state of distress, you don't want them hanging your hat, you need to be careful about what you say because people could be inclined to hang on every word." I'm like, "Really? Hardly." Because you're writing the book, you don't think people are listening to every single word you're saying because you're in your own zone and you think this is your book, but actually, that book now belongs to the public, that's their book.

Dr. Peters:
I want to actually point something out, do you think it's... the fact that you were so cognizant to make sure you communicate that way in your book and also on TikTok, do you think that's because in your training as a stylist, you're trained to sort of look at what works for other people and other situations? So it's really like it's less about being a generalist, and this worked for me and the focus on you, you've done so much to edit and to push things outward in your career, I wonder if that lends you perfectly to do what you're doing? So I appreciate that.

Annmarie O'Connor:
Thank you. I think it's, while working in journalism, being super careful about checking your sources, and also, just I think in the age in which we live where people can easily misinterpret something that's being said, and if you're not incredibly clear on what it is that you've said... because sometimes, you can write something... I always say, "You need to give time to marinate something, whether it's a piece that you've written for the Irish Examiner, or a book you've written, or maybe a look you're putting together for a client." You put a... I always say if someone's gone shopping, "If you're not too sure about, hang it up on the back of your closet and then just sleep on it, or the weekend, and take a look at it and think, 'What does it go with? What am I hoping to get out of this? Did I just buy this because I was like, I need a pick me up, or does this actually serve me in terms of my closet needs?' "
But likewise, I'm just very conscious of what goes out there and how things can be... to a certain extent, you can't guess how people are going to react, you can only do your best to edit and to present the facts in a way that is truthful and helpful, and hopefully, that will be received in that way, and that everything is ethical. So I have my own code of ethics, so I hope that I don't cross those boundaries.

Dr. Peters:
Annmarie, this has been so much fun to chat with you today. I just want to thank you for being an advocate for yourself and for others with Parkinson's disease. And everyone needs to check her out on TikTok, I did, @awalkintheparkinson's. And also, I think your book Twitch is coming out in September 2025, is that correct?

Annmarie O'Connor:
That's correct, yes. So if you go on to A Walk in the Parkinson's, there's a link in the bio, and it shows you where you can buy it in the US as well.

Dr. Peters:
Well, wonderful. And thank you again, and thank you to all of our wonderful listeners.

Annmarie O'Connor:
Thank you so much for having me. I had such a good time.

Dr. Correa:
Want to learn more about the conditions discussed in this episode and other factors that could impact your brain health? For the latest on causes, symptoms, diagnosis, treatment, and management of more than 250 of some of the most common and rare neurologic conditions, please visit brainandlife.org/disorders.

Dr. Peters:
Hello, Brain & Life Podcast audience. And I'm so excited, we have another expert with us today, and I am Katy Peters, your co-host, but I'm honored to introduce our medical expert, Dr. Raja Mehanna, who will be discussing the aspects of early onset Parkinson's disease. He is fellowship-trained in movement disorders and has a special interest, particularly, in early onset Parkinson's disease. He is an associate professor at the McGovern Medical School at the University of Texas Health, and he has been practicing since 2013 and is dedicated to providing his patients with expert diagnosis in all aspects of movement disorders including Parkinson's. So Dr. Mehanna, welcome so much to the Brain & Life Podcast.

Dr. Mehanna:
Thank you so much for having me.

Dr. Peters:
So I just gave a brief introduction. Can you tell us a little bit more about yourself and your practice and where you're joining us from?

Dr. Mehanna:
My practice is essentially patient-geared. I spend 75% in patient care and the other 25% in teaching and in research. I am very much involved with the Movement Disorder Society Early Onset Parkinson's Disease Task Force, where we try to identify what's going on in early onset Parkinson's disease, how we can more help patients with that condition.

Dr. Peters:
So can you share with us just sort of the basics of Parkinson's disease and what it means to be an early diagnosis versus maybe a late diagnosis?

Dr. Mehanna:
Parkinson's disease is what we call a neurodegenerative disease. So basically, as we grow older, we all lose brain cells, all of us. Now, in Parkinson's disease, we lose some brain cells faster than others, and these are the cells that produce amongst other a hormone called dopamine. Now, the lack of dopamine makes you slow, makes you stiff, makes you shuffle, makes you shake, which are the symptoms of Parkinson's disease. And while we don't have any cure per se so far for Parkinson's disease, we have many, many, many treatments to make up for the lack of dopamine to help our patients stay independent and functional for decades. And this treatment involves physical therapy, exercise, medication, and more advanced therapies such as surgeries, and pumps, et cetera. Now, the median or the average age of onset is usually in the mid-60s for most patient, and this is what defines if you want late onset Parkinson's disease, but roughly, 10% will have what you call early onset Parkinson's disease, which means when you have an onset before age 50.
Now, an important question I get from a patient with early onset Parkinson's disease is, "Well, is it going to evolve faster? Am I going to..." So actually, the good news in a sense is if you have early onset Parkinson's disease, you tend to evolve much slower than if you have late onset Parkinson's disease. And I tell my patient, "When you read the literature, and it says in 10 years or 15 years, you're going to have this or that, that doesn't apply to you. For you, it's add five to seven to maybe 10 years to it before you actually get to that point."

Dr. Peters:
So that makes me think it's really important to diagnose people early and to have good diagnostic tests. So when you see a patient with early onset versus late or more common onset, are they two different processes? Are they biologically different? Is it something... what turns on each process?

Dr. Mehanna:
So I have two questions here, are you asking about diagnosis, [inaudible 00:44:44] process? So let's talk about the process first. And the honest truth is we don't know, we still don't know what causes Parkinson's disease. We know what happens in the brain, you lose cells that produce hormone called dopamine. As we said, those cells are the part of the brain called the substantia nigra, and you have to lose this first certain amount of cells before you start having the symptoms. But why do you use those cells? We still don't know. There's a molecule called alpha-synuclein that accumulates, and we think this is likely the cause of the problem. Alpha-synuclein is normally present... I should have said a mutated form of alpha-synuclein. So we tell our patient with Parkinson's disease, "It's a mixture of bad gene and bad luck. For whatever reason, your alpha-synuclein has some kind of mutation that makes it more susceptible to start being abnormal.
And then you get exposed to something, that would be pesticides, it's the only thing we know for sure, but we don't know what else, and then this mutates completely, and you start having Parkinson's disease." But you take two identical twins, what might have Parkinson's, the other not. Or you take five siblings going in the same family, drinking from the same water, eating the same food, one might have Parkinson's, and the four other, not. So it's not black and white, this is what it is. Now, it's possible... and also, you also have some genetic forms like you inherit from a gene, a specific gene, let's say LRRK2, or PINK1, or something, and then here, you have a higher risk of having Parkinson's disease, it becomes a 50% chance, or 100% that you're going to have it later in life.
But this represents only 5 to 15%, or 5 to 10% of patients with late onset Parkinson's disease. Now, when you talk about young onset Parkinson's or early onset Parkinson's disease, the proportion of genetic forms is a bit bigger, it can get up to 25, even 30% in some studies, but you have 70%, we still haven't found a gene for it. And then there's some, okay, could it be that then the small mutation you had or the small variation you had in alpha-synuclein makes you even more susceptible, that instead of having Parkinson's disease at age 60, 65, when exposed to whatever is triggering it, you have it before 50? And this is based on animal studies. And we still don't know really why someone without a genetic mutation, instead of having Parkinson's at 65, has it at 45, and even why someone without genetic mutation that we can identify has Parkinson's disease, but the identical one doesn't. So we'll still try to figure things out.

Dr. Peters:
Well, it's very fascinating, and I think it sounds like you're sort of on the cutting edge of research to figure that out. But from a clinical perspective, what are sort of the first presenting symptoms, particularly for those patients with early onset? Is it different from the late onset?

Dr. Mehanna:
So if you compare early onset to late onset... So first of all, just let's... for a second, what are the main symptoms of Parkinson's motor symptoms? You have tremor, you have shuffling and slowness, and you have stiffness. And in patient with early onset Parkinson's disease, tremor is still the most frequent symptom, but they tend to have much more of stiffness and twisting, what you call dystonia, than their older counterpart. And in literature, we have seen that patient... or clinicians tend to spend more time doing multiple studies before diagnosing subjects with early onset Parkinson's disease because, "You can't be Parkinson's, it's too early, you're too young." And then that delays all the treatment. So actually, recently, we published with the early onset Parkinson's study group, we published a paper which is more like an eminence-based medicine, not an evidence-based medicine, where, "Okay, please don't waste time. If you think it's Parkinson's disease, these are the questions you should ask," which look at an examination, and the only thing you need is an MRI of the brain, and check for Wilson's disease," which is a inherited copper metabolism issue.
And it's important because it's not that frequent, but it's treatable. And so no need to do all kind of PET scans, and CT scans, and DaTscan, and 25 visits and delay the treatment. However, patient with early onset Parkinson's disease tend to have a much more difficulty with what we call non-motor symptoms, especially depression, anxiety, and dealing with stigma, because this is supposed to be a disease of the old people, "And I'm young, and I'm supposed to have that, I'm still working, I have kids who are still at home, and I still have that job," et cetera. And this is what we're trying to do, is to try to educate everyone that patient with early onset Parkinson's disease do have needs that are a bit different than late onset Parkinson's disease.
We want to be able to keep them at their job, we want to be able for them to get physical therapy that is not at noon because they have to go to work, and we want to have this physical therapy geared towards their needs and to have them together, not with 75-year-old retired people who have different needs and are at different stage in their life. And this is kind of the big challenge right now, to re-educate patients, empower patients, you have the right to ask for accommodation at work. The problem is, sometimes, you don't want to because the stigma, "I have to disclose my diagnosis." Okay. Maybe not from the beginning, but at some point, it's better than having early retirement. Looking at some studies published, a lot of patients with early onset Parkinson's disease have to retire early, but 80% of them wish they didn't have to. So 80% would prefer, "If I could go back, I would like to go back to work," so disclose my diagnosis and have accommodation for that.

Dr. Peters:
I completely agree. I'm a brain tumor doctor and I work with patients that are sort of in the same age group as you do, sort of that would you consider early onset age around the 40s to 50s, and really telling them to take advantage of accommodations, just like you described, I would say, that's also true for so many of other patients with other neurologics. So I'm glad that you're being an advocate for that in addition to being a clinician. So what about the treatment journey? So now, you've diagnosed someone, what is the journey for treatment like for these patients?

Dr. Mehanna:
So the good news for early onset Parkinson's disease is that some medication that are good but you would be afraid to use in older patients because of hallucinations and cognitive decline would be more easily used in younger patients. The problem though is younger patients with those medications, what you call the dopamine agonists, can have a higher risk of what you call impulsive behavior, like impulsive shopping, impulsive gambling, et cetera. But this is the only kind of debate you typically have, should we use those medications or not in this early onset population? Because we typically never use it after 70 because of all the side effects it can have. What I tell my patient with early onset Parkinson's disease is I don't treat Parkinson's disease in Mister, let's say, Smith, but I treat Mr. Smith who has Parkinson's disease. So I'm going to give you what you need so you can stay independent and functional.
20 years ago, there was what we call the levodopa phobia. We need to delay levodopa as much as possible to prevent all those side effects, which would be essentially dyskinesia, like Michael J. Fox on TV, the dancing wobbly movements, and which my early onset Parkinson's disease are most afraid of, because then how do you hide that? "It's going to build a stigma, and I'm too young, and I don't want it," et cetera. Well, first of all, 30% of patients at five years have dyskinesia, not everyone. Although, yes, unfortunately, early onset Parkinson's disease tend to have that a bit more than 30%. We know that, this is well-defined. But even when you have the dyskinesia, we have so many other options to treat them, includes advanced treatment like brain stimulation or pumps, that this should not prevent you from getting the treatment you need. If you might lose your job, because, let's say, you're a chef, and as a chef, you cannot cut the vegetable good anymore, you need your dexterity or et cetera, then yeah, you need the levodopa, you should not delay it.
I'm not saying that everyone who has diagnosis on Parkinson's disease should jump to levodopa, we have other options to start with possibly, but we should really not be afraid of levodopa. Studies have shown out of Italy and other places, that delaying the levodopa... the only thing it does, delaying levodopa by five years. So they compared groups five years later, and groups started right away. The only thing you did is that during the first five years, you had a lower quality of life. You start the levodopa, and in terms of complication, dyskinesia, et cetera, it's the same, because basically, it depends essentially on the progression of the disease. So you don't want to go through very hard times the first few years, very hard times at work, the getting demoted at work, losing your job because you don't want levodopa. This should not have to happen.

Dr. Peters:
I completely agree. And that's a fascinating study, and also, that's just very simple, that there was always be a natural history that those dyskinesias were going to develop, treat them so they can be as functionally as they want to be, because part of quality of life, and I've said it over and over again, is who you are, who your being is, who you're belonging to, your group, your work group, your family, your family life, and becoming what is your future. And so being, belonging, becoming, I always say those are my quality life mantra, the three B's of quality life.

Dr. Mehanna:
Absolutely. And I tell my fellows all the time, when you treat one patient with Parkinson's disease, you've treated one patient with Parkinson's disease. Because every patient is different, every patient has different demands. So there's no magic recipe or everyone is going to start with this medication. That's not true. What do you need? What is affecting you? And what is our goal here? And yeah, we have 17, 18 different medications today for Parkinson's disease. So it's not like one size fits all. Now, carbidopa and levodopa is still the best and the most important and the most powerful, so everyone, at some point, will need to be on it at different times, depending on their timeline, and their need, and their symptoms, but definitely, not be afraid of it.

Dr. Peters:
Well, we will not be afraid. Is there a different trajectory for female patients versus male patients with early onset Parkinson's? Is it different at all?

Dr. Mehanna:
That's a great question, and we don't know yet, but it's definitely something we want to look at. Now, understandably, you have a bit of more difficulties in early onset Parkinson's in women because, what about pregnancy, what about breastfeeding, et cetera, et cetera? Taking the medication during pregnancy, what is safe? What is not safe? Then being a bit sleep-deprived... well, this would apply also to the dad, I guess, but being sleep-deprived the first two, three months, et cetera. So it's definitely a bit more challenging in women, but it doesn't mean that women with Parkinson's disease cannot get pregnant. Even women with deep brain stimulation already, brain surgery, pregnancy should not be a problem. And we have published on that, I guess maybe less than a year ago, although it wasn't Parkinson's disease per se, it was another disease. But yes, so definitely, a bit more challenges there. But in terms of does it evolve slower, faster, et cetera, we don't know yet. And this is something we need to look into.

Dr. Peters:
We're talking about what's up and coming. What do you see are the recent advances that are exciting in the area of early onset Parkinson's? And you've already alluded to what you're hoping to study, but what are of some recent advances?

Dr. Mehanna:
We are looking at disease-modifying drugs, something that could potentially slow the progression of the disease, we still haven't found any, unfortunately. The only thing we have so far is physical exercise. So I tell all my patient, "Exercise, exercise, exercise," and for all who are listening to us and don't have Parkinson's disease, please exercise. Exercise in midlife decreases your risk of Parkinson's, Alzheimer's, and a bunch of other stuff as you get older. This last couple of years here... or last year actually, here in the US, we got a couple of FDA approval for newer advanced therapies that are subcutaneous pumps, like insulin pumps, but for Parkinson's disease. For those patients who don't want to get the brain stimulation, or afraid of it, or cannot get a [inaudible 00:56:34] on the other, at least now we have an alternative. What is very exciting is that we have a lot of research going on.
Unfortunately, I cannot promise that you have a cure at the horizon right now, I wish I could, but we're having every year a couple of new medication that are added to our arsenal to improve criteria of life of our patients. But I tell my patient, "Parkinson's disease is a bummer." Yes, it's not bladder infection, you take a week or two from the body and it's gone, but it's also not stage four cancer. It's like hypertension, it's like diabetes, it's like hypothyroidism, you're going to have to take medication for the rest of your life. You have to see me every three to four months, so we can stay ahead of the curve, but it's not the end, it's not a death sentence. It's not a death sentence. Now, hopefully, hopefully, in my lifetime, hopefully in a decade, I don't know, we'll have a cure where we can say, "You're cure, you're done, you don't need to see me anymore," that'd be great, but I cannot promise this in the short term.

Dr. Peters:
Well, I think with a great partner like you supporting those amazing patients, I'm sure they're going to continue to thrive. So I just want to say, Dr. Mehanna, thank you so much, this was... I'll be honest with you, I'm ready to go out and exercise, I'm ready to go refer all my patients to moving disorders clinics. But again, thank you very much, and I just also want to say thank you to our listeners.

Dr. Mehanna:
Thank you for inviting me.

Dr. Correa:
Thank you again for joining us today on The Brain & Life Podcast. Follow and subscribe to this podcast so you don't miss our weekly episodes. You can also sign up to receive the Brain & Life magazine for free at brainandlife.org.

Dr. Peters:
Also, for each episode, you can find out how to connect with our team and our guests along with great resources in our show notes. We love it when we hear your ideas or questions. You can send these in an email to blpodcast@brainandlife.org, and leave us a message at 612-928-6206.

Dr. Correa:
You can also find that information in our show notes, and you can follow Katy and me and the Brain & Life Magazine on many of your preferred social media channels. We are your hosts, Dr. Daniel Correa, connecting with you from New York City and online @NeuroDrCorrea.

Dr. Peters:
And Dr. Katie Peters, joining you from Durham, North Carolina and online @KatyPetersMDPhD.

Dr. Correa:
Most importantly, thank you and all of our community members that trust us with their health, and everyone living with neurologic conditions.

Dr. Peters:
We hope, together, we can take steps to better brain health and each thrive with our own abilities every day.

Dr. Correa:
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A Walk in the “Parkinson’s” with Author Annmarie O’Connor

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