Ep 3: What Is Young-Onset Parkinson’s Disease?

[00:00:01] Kat Hill: My dad had Parkinson's disease and I have several family members that have Parkinson's, but they were all diagnosed later in life.

[00:00:10] Anna Stoecklein: Parkinson's disease isn't something you expect to get when you're in the prime years of your life. And especially not when you're staying fit and healthy.

[00:00:19] Kat Hill: I was running and I did a 5k and my foot was dragging and I've heard a lot of people say that was an early symptom for them as well.

[00:00:29] Anna Stoecklein: Or about to be a first time parent.

[00:00:32] Dr. Soania Mathur: I was expecting my first child and just starting a new practice of my family medicine. And I noticed an intermittent tremor on my right pinky finger.

[00:00:40] Anna Stoecklein: We'll discuss YOPD otherwise known as:

[00:00:44] Kat Hill: Young-onset Parkinson's disease. It's an interesting term because there's not a worldwide agreed upon age at which you are considered young onset or early onset.

[00:00:55] Anna Stoecklein: We'll hear what it's like to come to terms with a young onset Parkinson's diagnosis.

[00:01:00] Tim Hague: I remember it like it was yesterday. It was Saturday morning. I was sitting in my kitchen, reading the newspaper and I looked down, noticed my left big toe was twitching. And it was just that, steady, slow, rhythmic twitch that I could make stop if I focused on it, it would stop, but as soon as I took my mind off of it, it would just start again.

[00:01:19] Dr. Soania Mathur: Over the next few years, the symptoms worsen to the point where within about 12 years for me, I could no longer keep it a secret.

[00:01:27] Anna Stoecklein: And we'll explore how to adapt to life with a chronic illness.

[00:01:31] Kimberly Berg: You have to stay hopeful because the minute that you start giving up hope that's a signal to your brain and your body that you're done.

[00:01:43] Anna Stoecklein: Welcome to the Parkinson's disease podcast. I'm your host, Anna Stoecklein.

The Parkinson's disease podcast was created for educational purposes only. It's not a substitute for formal medical advice. Please talk to your qualified healthcare provider for personal medical diagnosis and treatment.

[00:02:05] Dr. Rebecca Gilbert: Although one of the clearest risk factors to Parkinson's is age, and very clearly the incidence of developing Parkinson's disease increases as a person gets older, there is a subset of people with Parkinson's that develop it young, in their thirties and their forties, and a rare few, even in their twenties, and that's called young-onset Parkinson's disease, and that affects about 10% of the overall population with Parkinson's disease.

[00:02:32] Anna Stoecklein: This is Dr. Gilbert. She's the chief scientific officer at the American Parkinson's Disease Association. So, what counts as young? Dr. Mathur a primary care doctor says that the age that defines young is after all subjective.

[00:02:48] Dr. Soania Mathur: Well, there is no clear definition. Different countries and different organizations use different definitions, but it's usually under the age of 50.

[00:02:56] Anna Stoecklein: Dr. Mathur was diagnosed with Parkinson's disease when she was 28.

[00:03:01] Dr. Soania Mathur: We do know that there are some differences in terms of the way we experience the disease compared to our older counterparts. Tend to progress a little bit more slowly, tend not to have some of the cognitive issues that our older members of our community may have. So, there are some subtle differences between the two plus the other thing is, young-onset Parkinson's disease affects people in the sort of their prime of their lives. So, psychosocially, there are some different issues that we deal with.

[00:03:25] Anna Stoecklein: And Dr. Gregory Pontone, a Parkinson's physician at Johns Hopkins, wants listeners with young onset to know.

[00:03:32] Dr. Gregory Pontone: One of the more important things is that people of early onset Parkinson's tend to have a milder course, meaning that the symptoms progress more slowly and more faculties are preserved over that early course of the disease. So it's not uncommon for people with early onset Parkinson's disease to continue to function well and even complete their careers and retire at near normal retirement age while managing the disease.

[00:04:00] Anna Stoecklein: When you're living through a busy period, like many people who are middle aged or younger are, it's easy to brush off health concerns as something benign, which is exactly what Kat Hill did.

[00:04:11] Kat Hill: I had teenagers at home and lots of demands, and I thought it was just my busy lifestyle that was contributing to these growing number of symptoms I was having.

[00:04:22] Jeff Lasley: When I told my parents, they were surprised they were kind of shocked. They didn't know younger people even got Parkinson's.

[00:04:30] Dr. Soania Mathur: We're usually in our prime earning potential for our families to provide for we're usually in the prime of our occupational career.

[00:04:38] Anna Stoecklein: So seeking medical advice and booking to see specialists can feel like a chore. Even Dr. Mathur, a practicing medical professional, was inclined to ignore her initial symptoms.

[00:04:49] Dr. Soania Mathur: It started off as a tremor in my right pinky finger. I thought initially nothing of it. Passed it off as all good doctors do. But when it became more constant and concerning, my husband, who's also a physician noticed it and he said, you better go get that checked out. So I went to the neurologist in my practice that I had recently joined, and he, just over lunch time and a few clinical tests said, I think you have young-onset Parkinson's disease, which was quite astute of him to think of, but at that time I didn't believe him of course, but accepted his offer for second opinion. And instead of exonerating me from that diagnosis, he confirmed it. And so there I was at 28, just starting a new medical practice, expecting my first daughter, and with the diagnosis of young onset of Parkinson's disease.

[00:05:34] Anna Stoecklein: Similarly to Dr. Mathur, Tim Hague was an experienced nurse working with many Parkinson's patients, when he noticed his own early symptoms. He is now a YOPD advocate and winner of Amazing Race Canada, an adventure reality game show where teams of two race around the world.

[00:05:52] Tim Hague: I had been a nurse for 18 years at that point. My dad had died of Parkinson's, had a half sister with MS, so I right away knew that it was likely one of those two. And that was literally the first five minutes with Parkinson's. That was August of 2010, And by February of 2011, I was diagnosed with young-onset.

[00:06:12] Anna Stoecklein: To be diagnosed at 28 like Dr. Mathur is considered rare. However, young-onset Parkinson's, whether diagnosed at 28 or 46, like Tim Hague, can impact your career as well as your family.

[00:06:26] Kat Hill: It was life changing. I left work, not feeling well and never went back. I felt very laid out by the news and frankly was very down depressed. I was also very tired and sleep deprived. I realized in retrospect how hard I had been pushing through a lot of the symptoms. So I think a combination of fatigue and depression, I was pretty much on the couch taking care of the basics for about six weeks.

[00:07:01] Anna Stoecklein: As we age, most of us expect to encounter health troubles. It almost seems inevitable. However for Kat, Jeff and Dr. Mathur becoming ill before friends, spouses, and even sometimes their own parents can be a cause for anxiety.

[00:07:18] Dr. Soania Mathur: We have fair number of years ahead of us, of living with this disease. So the fear of the unknown is quite significant for those of us that get it young because we don't really know what the future holds. 10, 20, 30 years down the road.

[00:07:29] Kat Hill: My family was very gracious in giving me space as basically I grieved that first few weeks after my diagnosis.

[00:07:37] Anna Stoecklein: So once a person receives a young onset Parkinson's diagnosis, what happens next?

[00:07:43] Dr. Soania Mathur: It progressed, in my opinion rather quickly, but maybe not, to my right hand, and then to my left hand, and then my right foot, and my left foot. And so I started to develop, you know, this global tremor. As well as some non-motor symptoms such as sleep disorder and anxiety, and sometimes constipation problems, just the global pervasive nature of this disease was rearing its ugly head at that time, over the next few years, anyway.

[00:08:11] Anna Stoecklein: The science behind medication and the options available is something we will cover in more depth in an upcoming episode, but the role medication plays in the daily life of a person with young onset might be a little different than in older person.

[00:08:24] Dr. Soania Mathur: My goal was to be able to function as a physician, so I would time my medications to be able to immunize babies or to take a blood pressure or to do a physical exam. So minimize my symptoms when I needed to minimize them the most, according to what I had to do that day. But that led me to start to increase my medications to the point where I was getting more side effects than help from the medications. So that was the unhealthy way of approaching, it was just trying to medicate everything to get to the point where I needed to be able to hide my condition, not disclose it, not get the support that I probably could have gotten at that time.

[00:08:59] Anna Stoecklein: Still to come in this episode, we'll hear more about what sort of symptoms you can expect when facing a diagnosis of early onset Parkinson's.
The Parkinson's disease podcast is part of the Health UNMUTED library. Search for Health UNMUTED on your podcast player to find series on a host of other health conditions.
There are also some symptoms that may occur more frequently in those diagnosed at an earlier age.

[00:09:29] Kat Hill: Since my diagnosis, I've struggled with bilateral hand dystonia, which is abnormal muscle cramping. It's a separate diagnosis, but it's often combined for folks, especially with young onset Parkinson's. Many people get it in their feet, I have it in my hands. So it's greatly impacted my ability to use my hands for quite a while. My middle fingers were fixated up, which was terrible. And it was like, I was flipping people off all the time and it's painful. In the morning I have to uncurl my hands often. I now get treatment for that, which involves every 12 weeks I go in and I have Botox injections in my forearms and the front of my arms that deadens that muscle.

[00:10:19] Anna Stoecklein: Kat chose not to return to her full-time career.

[00:10:22] Kat Hill: We rightsized our finances and we were able to stay in our home, getting creative, renting some rooms out, and I was the primary breadwinner. So there were a lot of logistics that needed to happen to set up a life that could be fulfilling and rich and wonderful, and affordable for us, but we've been able to do that.

[00:10:46] Anna Stoecklein: And Dr. Mathur rearranged the way she worked to fit around her diagnosis and the symptoms she was living with.

[00:10:52] Dr. Soania Mathur: I could look at my life goals a little bit differently. Then it was to be able to function as a mother, to be able to help out my kids, to be able to do my advocacy work, but on my own schedule and in my own time.

[00:11:03] Anna Stoecklein: Tim continued to work as a nurse, but did end up retiring early due to the condition. He then found other ways to maintain a full life.

[00:11:11] Tim Hague: I went back to work after diagnosis and I managed five years. And I had really wished that I could have kept working, could have found some way to keep working. I have been busy, the Amazing Race, it made me extremely busy. I started speaking right after the race and I did 70 events that first year. And I have been busy speaking ever since. We started the charity, the wellness center here in Winnipeg. There's been lots of things to keep me busy, but none of them are my career that I trained for, or that I spent 21 years in. So leaving that early feeling like you had to leave it, feeling like that it was taken from me, was very difficult to deal with for a number of years. But in time you, like everything, you come to terms with it and realize that I am very fortunate to be busy, to have things that do demand my time. And that's very helpful.

[00:12:03] Anna Stoecklein: As well as physical symptoms, learning to cope with cognitive changes can be difficult, especially if you're used to being busy and active.

[00:12:11] Kat Hill: I have to read a recipe, 85 times in the process of cooking something. It used to really scare me. And I've just learned that my brain just works differently. It just takes me longer.

[00:12:24] Anna Stoecklein: It is of course, up to each person who they choose to tell about their health, including a diagnosis like Parkinson's, but sharing the experiences with trusted friends and family might be helpful.

[00:12:35] Kat Hill: I've shared with everybody close in my world that I do not want our conversations and our interactions to be all about any disease. I certainly am open to any question that they have about how I am doing, but by no means, do I want it to be "Hi mom, how are you feeling?" Because having Parkinson's disease is certainly part of who I am, but it is not how I choose to define myself. I think that it's important when we get a diagnosis that we feel support, that we're able to ask for support.

[00:13:14] Dr. Soania Mathur: I didn't know that I was living with a burden of hiding this disease until I disclosed. Once I disclosed, it wasn't a pity party that I was dreading, it was actually an outpouring of support and love. And a weight was lifted, one that I actually didn't know was there in the first place.

[00:13:30] Anna Stoecklein: As a parent with a new diagnosis, talking to your children in particular can feel like a daunting task.

[00:13:37] Dr. Soania Mathur: My daughters were all born after my diagnosis, so they don't really know me as any different. I've always had shaky hands, I've always had Parkinson's disease. So it's a little different for them, 'cause that's their norm, as opposed to someone who's diagnosed with children that are already a bit older for instance.

[00:13:55] Tim Hague: My oldest would have been about 21 when we told him, and then they stagger backwards from there four years. So, 21, 17 and 13, somewhere in there. So we tried to take age appropriate response to each of them, but the truth is the 17 year old and the 13 year old, they see dad every day. Dad looks normal and they're wrapped up in their teenage lives. So, you know, dad's still here, he's not dying, nothing's changing, on we go. And the 20 year old, he took it pretty hard. He struggled with it for a while, which was unfortunate, but he has since come to terms with things and has done quite well with it.

[00:14:31] Anna Stoecklein: Both Tim and Dr. Mathur think honesty truly is the way to go.

[00:14:37] Tim Hague: I'm not one to hide things. I've been a nurse forever, and I've seen the damage done in families, by people hiding and lying and trying to pretend. So I just don't wanna do that, but we certainly attempted to manage it in a age appropriate and healthy fashion for the kids.

[00:14:52] Dr. Soania Mathur: We've always approached it in a very open way. So, we never hid my symptoms from my kids, from the girls.

[00:15:00] Anna Stoecklein: If it's something you're able to do, asking children to be active participants in your life with chronic illness might even surprise you.

[00:15:08] Dr. Soania Mathur: They were about 7, 5, and just 1 or 2, when we came back from a fundraiser that we always go to in New York City. And when we came back, we said to the girls, so do you know why we go to New York City every year? And they said, because you have Parkinson's disease. And it was interesting cause we had never really actually labeled it and verbalized it, but that's what showed me kids are so intuitive, they know what's going on, even if you don't think they do.

[00:15:36] Anna Stoecklein: So perhaps we don't give children enough credit.

[00:15:39] Dr. Soania Mathur: Obviously it's stressful for my girls to see me when I'm not feeling well, that goes without saying, but if they have learned a great deal of empathy through this experience, they've learned a great deal of charity through this experience.

[00:15:53] Anna Stoecklein: And it may even set them up to deal with their own struggles better in the future.

[00:15:57] Dr. Soania Mathur: They've also learned that life isn't perfect and life isn't going to be perfect, but the way they approach those imperfections or those challenges is what's gonna define them as people. So I think that they've learned some very good life lessons from it, and we're very close as a family.

[00:16:12] Anna Stoecklein: And so as Dr. Pontone explains, whilst diagnosis can be difficult to take, the disease can be managed and life can go on.

[00:16:21] Dr. Gregory Pontone: Certainly in early onset Parkinson's for the majority of people, while there is the burden of a chronic disease, like diabetes or high blood pressure, when it's well managed, it's very reasonable to expect that you can maintain a high quality of life. And so that's the message, the message of hope.

[00:16:39] Anna Stoecklein: And now, let's hear about some resources that are available to continue learning.

If you'd like to learn more about Parkinson's disease, head to healthunmuted.com to find a full list of resources, including a webinar on young-onset Parkinson's put on by Cure Parkinson, and an online community for people diagnosed with young-onset Parkinson's and for their loved ones called Young Onset Parkinson's Network. You can also find ways to connect with others through global and local advocacy organizations, such as PD Avengers, and there's a selection of other podcasts that you might find helpful as you continue to learn more about this disease, such as The Parkinson's Life Podcast and the Learning About Parkinson's podcast.

There are a lot of choices for managing the symptoms of Parkinson's using both modern medicine, as well as lifestyle changes. In the next episode, we'll talk to Parkinson's doctors about how medication works and we'll hear from people living with Parkinson's about their experiences.

[00:17:38] Kat Hill: I was really not wanting to start on medicine right away. I was worried about the long term side effects.

[00:17:45] Dr. Soania Mathur: I began to realize that unless I was going to optimize my own healthcare or my own self care, I wasn't gonna be able to do much for my family or my community. So then I started paying more attention to my exercise routine, more attention to my nutrition, more attention to sleep, trying to get enough sleep, which is sometimes very difficult with Parkinson's disease.

[00:18:05] Anna Stoecklein: Thanks to Dr. Pontone, Dr. Mathur and Dr. Gilbert for their medical expertise, and to Kimberly Berg, Jeff Lasley, Tim Hague, Kat Hill and Dr. Mathur for sharing their personal experiences.
This is The Parkinson's Disease Podcast hosted by me Anna Stoecklein. This show is a part of the Health UNMUTED audio library by Mission Based Media, to listen and learn more visit healthunmuted.com and follow our show on your favorite podcast player.