Amy Chrest is a dedicated speech-language pathologist with over 30 years of experience, diagnosed with young-onset Parkinson’s disease in 2017. Despite the challenges posed by her condition, Amy remains a passionate advocate for mental health and Parkinson’s awareness, particularly focusing on how the disease uniquely affects women. She has chosen to use her extensive professional knowledge to help others, both as an ambassador for the Parkinson’s Foundation and as a research advocate.
Amy emphasizes the importance of exercise, positivity, and proactive engagement in life, even amidst the struggles of living with a progressively degenerative neurological disorder. Her work and advocacy aim to empower others to manage their symptoms and continue living fulfilling lives.
Well, I’m Amy, and I was diagnosed in 2017. I was in my late forties at the time, but what led me to my diagnosis, I would say easily seven years prior to my diagnosis, I started experiencing significant anxiety. I am a person who’s prone to be a worrier, but this was a different level of anxiety that was impacting my life. I was in my late thirties at the time. And being a female, you go to your doctor and they say, oh, it’s probably hormone related. You know, you’re a young, busy, full-time working mother. I’m a speech-language pathologist working full-time. So I do have knowledge of different neurological etiologies. Parkinson’s was not on the radar, although my paternal grandmother had Parkinson’s. I wasn’t experiencing anything motor. Fatigue became an issue, and I’m a very high-energy person, so that was very frustrating. But again, full-time working mom, two boys, they were in their early teens at the time when I was diagnosed. So what led me to the doctor, my primary care doctor, I actually had two things going on at once. I had some pins and needles going down my left arm. That would happen kind of randomly, but then I also was developing tremors in my right hand and my pinkies, fingers at rest at work. I noticed it when I was holding the mouse. It was enough to kind of give me pause, like, oh, this? What’s happening with my fingers here? So I did go to my primary care doctor and thence all the testing began, trying to figure out what the deal was with the pins and needles and my left arm. I was actually, when that first happened, I was in a get-to-know-the-teacher meeting with my son. It was a long day after work, and I thought, oh, my gosh, am I having a heart attack right here in the meeting? Because you hear left arm symptoms. Obviously, I wasn’t. Fast forward to going to the primary care doctor. She said, all of this does sound very neurological. Let’s get you to a neurologist. I have always exercised all my life. I exercised before work, after work. I was a runner, so I thought perhaps I’d injured, you know, something, running.
When I went to the neurologist, they started their gamut of tests. They first did a CAT scan of my head. They did then MRI of my brain. They started to just rule out as many things as they could. As we know, medicine is as much ruling out as it is ruling in. So they were ruling out Ms. I had the test where they put the needles in you, and then they give you a little shot to see how your nerves were responding. So they were ruling out ALS, ruling out brain tumors, ruling out stroke. Just a lot of ruling out. And this was over the course of, gosh, it took two years to get to my diagnosis, and I believe my physical symptoms, probably started about 2015. You kind of watch it for a while, and then you see that it’s not going away. So 2016 is when we started with kind of the hardcore empirical test, and they discovered I had severe degenerative disc disease. So I had a surgery, ACDF surgery. I point to my neck because that’s where they did the surgery, and that was the reason for the tingling in my left arm. And the minute I woke up from surgery, I looked at my right hand, and it was still tremoring. The neurosurgeon said, that is something beyond your cervical disease. We need to see your neurologist, continue with your neurologist for that. So back I went to my neurologist, and it ended up being within the next nine months later, I guess. So in 2017, they determined that I had young onset Parkinson’s. It was just kind of a weird lightning strike kind of thing, that I had cervical stenosis, that reared its symptoms a little bit prior to Parkinson’s. But to be clear, they’re two separate neurological things that happened to me at once. And with the surgery that I had for the cervical, we knew that with the tremors still going on, it was something more. I had also experienced some balance issues, and my right arm was not swinging as I was walking. I had fallen a couple of times when I was running because we realized my right leg was not perfectly clearing the ground. So my neurologist then said, we’re going to send you to the motor movement disorder specialist at that practice because we want to make sure that you know what is going on. After one visit with him, he said, yes, this is Parkinson’s. So that’s how I got to that step. It was kind of circuitous, but being a woman, they first look at the hormone stuff and then factor in the physical issues.
How did you feel during this complicated diagnosis period?
Honestly, I was very frightened because the first neurologist said, you have Parkinsonism. And that was a term that I had not heard, I had not identified with. Of course, being the person that I am, type a, most of us go to Doctor Google and start looking. The umbrella term under Parkinsonism also came with the primary or other etiologies, and like, the multiple system atrophies included under that. So I was very worried about that. That comes with Parkinson’s symptoms but progresses more quickly. I was wondering, I had maybe a month before I went to the motor movement disorder specialist, thinking, is this your kind of basic etiology, idiopathic Parkinson’s? Is this something like the multiple system atrophy, or something more I’m unaware of? I kind of laid in a state of fear with that. And then after being diagnosed by the motor movement disorder specialist with idiopathic Parkinson’s, we would expect to follow a slower progression. I honestly had relief because of it. It was going to be perhaps a slower progression. That’s what they said. With young onset, we wouldn’t expect anything rapid. You may live with the mild symptoms for 15 years, more mild and very manageable. So I hung on to that as well. And of course, I shared with my husband and we cried and talked about how are we going to tell our two boys, who were teenagers at the time. And they knew, obviously, they knew I was having all these tests and knew my symptoms. They’re smart kids. They wanted to know, and we were going to always keep them in the loop.
What actions did you take after receiving your diagnosis?
The first thing I wanted to know after the motor movement disorder specialist neurologist diagnosed me was, okay, what’s next? What can I do? Let’s face this head-on. He talked about medicine, the gold standard, carbidopa, levodopa. I said, what can I do before medicine, I want to know if there’s any way I can manage this. Because I am young and I know at some point I probably will need to go on medicine, but that’s a long time. You know, if we’re talking 30 years of medication, I would like to see if there’s anything else I could do. He said, well, exercise is one of the lifestyle things that you can change or maintain, that has been proven to be neuroprotective to some degree. I also asked, are the medications neuroprotective before I totally roll those off right at the beginning? And he said, no, they are not. They are not neuroprotective. They are to address the symptoms and manage them only. So it made sense to me since I exercise as part of, that’s like breathing to me, because it helps with the emotional aspects, with stress, plus just being physically fit. I was already doing that. So I thought, hey, that’s my jam. That’s what I do. So I said, great, I am going to just keep exercising. Let’s hold off on the medication. And I run. I also started to incorporate more yoga, more pilates, and more weight training in terms of light weights to also build bone density. I held off on the medications as long as I could. In terms of family, of course, my husband, I told our children a couple of days after just so that I could have time to process a little bit. And then my immediate family, my siblings, and my mother. My father had already passed. As far as work, I was working at the time in the school setting as a speech-language pathologist. And I had also recently begun a caregiving role for my mother. It was a very personally stressful and emotionally stressful, difficult time for me. I had lost my father not too much earlier. I did not feel comfortable sharing with people at work, because being young, I felt there was a stigma of, will she be able to continue her job at the top of her job, like she typically would do? It just felt too stressful. I had too many things on my plate. I didn’t want to let others know. Then, a family member passed away unexpectedly, and the stress was exorbitant from that. And my symptoms amped up immensely. My tremors I could no longer hide. My stiffness was worse. Emotionally, I was having more difficulties.
I told a small group of people at work and said, look, I was diagnosed with Parkinson’s disease at an early age. Stress only exacerbates the symptoms, and I can’t hide it anymore. That, in and of itself, is too stressful. What a relief I found when I told that small group of people. Also at that same time, I asked the neurologist, what can I do to help with this? Because if I’ve got this, let me do something with it. And so I very immediately got involved in a clinical research study through the neurologist practice. They were not doing the study. They just helped find participants. That helped me find a sense of control and purpose with this, because I couldn’t control a disease, but I could control how I responded to it. That felt good, and it felt like that was something that I could give back. Something I could do to help others and also to help me because I did have a lot of personal stress going on at the same time. So I kind of could remove myself from all that and just kind of focus on Parkinson’s. And then I eventually wanted to go back to the medical setting because that’s where my career started. I went to the school setting because I wanted to be on the same schedule as my kids. Then they were growing up and I wanted to go back to a medical setting, which is my love. I love working with patients. So I went back into the hospital where I currently working, and I worked at the start of my career before I had children. I was working as an inpatient speech-language pathologist in an inpatient rehab hospital, working with patients with neurological etiologies, including folks with Parkinson’s. But now I’m back into my seclusion. I did not want to share this with my job again because of the same fear. I did not want my colleagues, my PT, physical therapists, occupational therapists, medical providers, nurses, I didn’t want them to say, oh, gosh, Amy’s got Parkinson’s. How is this going to impact her? And she’s working with people with Parkinson’s. In that setting, we typically see folks who are in their seventies and eighties with it and not a young female. So I kept it quiet again. And then as my symptoms progressed, I knew I needed to go on medication. And that’s when I decided to disclose publicly that I had this. That’s where my real advocacy started.
How did you navigate the decision to disclose your condition to colleagues in the professional setting?
It’s kind of twofold, I guess. When I was thinking of disclosing and not disclosing, I started back in the hospital setting. It’s been almost four years now, and I only recently disclosed in January. So I’ve been living with this for almost seven years. From a professional colleague standpoint, I almost felt like I did not want to burden them with the knowledge of Amy has young-onset Parkinson’s disease. Honestly, I was surprised some of my colleagues had never really known of Parkinson’s striking before the age of 50. We just don’t see it in the hospital setting. We see the typical after 65. One, I kind of felt like, am I going to burden my colleagues with it? Like, are they going to feel like they need to treat me differently? Two, are they going to think from a physical and or cognitive standpoint that perhaps I would not be able to work at the top of my abilities, the top of my license, if you will. I just didn’t want any doubt. The job is stressful enough. We’re in it for the patients. I just didn’t want to burden anyone. The second part, I think, addresses what you’re getting at, is I’m working with these people who are living the same thing I am. So perhaps if I share or disclose it, it might help them. But when I’m working with them, I want to focus solely on them. I don’t want to share in the clinical setting. Oh, yeah, I have this, too, let me tell you about me. I really, with what I do, I want to focus solely on them. And from a clinical standpoint, that is the right thing for me to do. I am an ambassador with the Parkinson’s Foundation now, and I’ve recently begun, and finished onboarding as a research advocate. If I happen to see those people at a foundation event or when I’m volunteering and they look at me and say, oh, my gosh, you have Parkinson’s? That’s when I say, I do, and let me tell you about it. But when I’m working with them professionally and focus solely on them. I have found people. I’ve not seen any of the patients I’ve worked with, but when I see people in the community at an event, I’ve had folks come up and say, wow, you don’t look like you have Parkinson’s. What are you doing? What’s your secret? Those have been the folks that are older when they’re diagnosed. I have met a few young onset Parkinson’s folks like myself, and it has been so amazing. I also would look at them and think, you don’t look like you have Parkinson’s. So it’s a real gift to be able to meet someone else who’s about my age and to discuss, like, yeah, this is what I’m going through. How about with you? And it is a real community when you can find someone who also has it because it’s not particularly common.
Does your condition influence your work with people who also have Parkinson’s?
I’ll say, though I cannot dissect in my own mind the fact that I have Parkinson’s. So without them knowing, I have the utmost empathy and knowledge based on my experience with Parkinson’s, when I am working with them. I’m fully engaged, as I am with any patient who I’m working with, whether it be a stroke, traumatic brain injury, or anything that has caused neurological impact as a person living with a progressively degenerative neurological disorder. Without them knowing, I know what I know. So I know at least what it feels like in my experience and can really relate to them. From a Parkinson’s community in terms of advocacy, I do feel like I’m a bit of a unicorn because I am a speech-language pathologist. I’m a medical speech-language pathologist with the background and the knowledge. So this is where, from a community content creator standpoint, I share my knowledge of how Parkinson’s impacts swallowing, where we can develop dysphagia, which is a swallowing disorder, and how that can be addressed by a speech-language pathologist who is knowledgeable in that area, how Parkinson’s will impact your voice and your speech, and how to advocate for yourself when you go to your doctor, what to look for, maybe what interventions would be appropriate for you. So that’s what I realized once I disclosed in January. I’ve got all this knowledge of over 30 years of being a speech pathologist in my brain. It’s so a part of who I am, and I can’t unknow that. So I know what’s coming my way, probably. I know it’s down the path. So I am working as hard as I can while I can to use the knowledge I have professionally to help others because I know at some point I probably won’t be able to work full time and share this knowledge and be an advocate. So I’m coming in heavy while I can.
As a woman, how do you feel your experience with Parkinson’s differs?
I am so glad you asked that question. Another thing that I am passionate about is mental health advocacy. The aspect of being a woman with this disease, all of the things you said I relate to 100%. One of the things that when you’re a woman your body experiences different hormonal changes. One thing that was, I had no information about when you are experiencing your monthly cycle and you have Parkinson’s. Parkinson’s exacerbates that for me, the symptoms, to the point that, it is debilitating. Conversely, my Parkinson’s symptoms increased tenfold. So you had a double whammy. Yet I still had to take care of my kids. At the time, I was sandwiched between caregiving for a parent and my kids, working full time, still a wife, wanting to be attractive, and whatnot for my husband, still trying to figure out how to exercise. So that piece, I was like, what is happening here? Why every month, am I almost not functioning? Then through my own kind of literature review found that this is a thing that both Parkinson’s symptoms and your female symptoms exacerbate. The second part is, what I have found is I’ve got to exercise. Hands down, full stop. I’ve got to continue exercising. A lot of my content focus is on exercise because it’s just such a big part of what I do to help keep my symptoms manageable. I am now on two medications. One medication started two years ago and the carbidopa levodopa six months ago. The exercise is critical for the mental health aspect and you just have got to try and carve out time for yourself. For me, I’ve ended up having to get up an hour and a half earlier before work just so I can exercise. And when I do that, I find that the pieces are easier to manage in terms of the motor and the non-motor from a standpoint of being a female and suddenly, or not suddenly, but progressively having tremors that have progressed, you know, it’s in my leg and my hand in my arm. Also for me, one of the other things is stiffness and pain, which has really negatively impacted my life, the dystonia, which with young onset Parkinson’s, you tend to have more of an odd curling of your hand or foot. That’s not cute. It doesn’t look cute, but it certainly doesn’t feel good. So trying to manage the pain has been an issue that impacts quality of life. But I’m so glad you asked that question because I do think being a female, on top of having all the responsibilities that we do, makes it a level of challenge that perhaps males don’t experience just because the hormones are different. The responsibilities are different, I believe. So it takes a lot of work.
How was the family and community support after you disclosed your condition?
I’m very fortunate. My husband and both of my sons are fantastic human beings. They just really are. I’m so, so lucky. We’re in it as a team. So I’m very, very grateful and I am lucky in that way. When you said we don’t want to ask for help, that is me 100%. That’s another reason why I didn’t disclose it to anyone because I just felt like once it’s out there, it could be burdensome. But I was 100% wrong. I will say that I’ve been met with such compassion, love, and nurturing from people at both my work and, of course, my family. What I have been missing out on is the online community that I had no idea was out there. I mean, it was just January when I started an online profile of myself with Parkinson’s. I never did Facebook or any of that stuff until, like, a year ago, because I was too busy. I was too busy doing all the things we just talked about. I’m like, I don’t have time for social media. The only reason I joined social media was from a professional standpoint. I wanted to belong to a group of speech-language pathologists. It was part of something I had already joined, I was paying for. So I thought I might as well go online. And then I just one day typed in young-onset Parkinson’s. I had no idea. There are people that look like me and my age, and, you know, it’s a community. I’ve been going this whole time, just, like, going, going, going, keeping it to myself and except for my family. And so that has helped me tremendously from an emotional standpoint. Like, I sit and I read everybody else’s stories, and we communicate. I’m like, I’m not the only one with this. So, yeah, that’s been helpful.
Could you discuss your social media advocacy and how you use your platform to raise awareness?
I had people and friends of mine say, Amy, seven years is a long time to go to hold this kind of thing to yourself. Like, thank you for sharing. I’ve had friends from as far back as high school say, thank you for being candid about the emotional aspect of it, the depression and anxiety that comes with it. I don’t have Parkinson’s, but I’ve been struggling with depression and anxiety. What do you do? What has helped you? Another person, oh, I don’t have Parkinson’s, but I have such and such. Thank you for coming forward with that. Of course, within the young onset Parkinson’s community, to see other women like myself, who are balancing all the things and living life to its fullest. That’s what I want to be able to show folks who have just been diagnosed that while it is terrifying, it’s predictable in terms of perhaps the long-term outcome, but not predictable, maybe for you, because it is such a person-specific disease. My Parkinson’s disease will not progress at the same rate or in the same way as someone else’s. To know that there’s this community of both women and men who are experiencing this, I can’t even tell you how much that meant to me to know that I’m not in it alone. So I want anyone else to know that has just been diagnosed that you’re going to be okay.
How has Parkinson’s influenced your perspective on life and your approach to advocacy?
I am a very positive person by nature and very high energy. I have found that probably one of the biggest gifts that Parkinson’s has given me is that I can share that positivity with others and do it now. Because there is in the back of my mind a little clock that ticks that says, you are never promised another day. So do the things that you want to do now. Do it while you can do it. Do it while you’re physically able. Engage with others while you are cognitively able. It’s not the end of the world to have this disease. You will still get up and you will still do what you want to do. I’ve never, ever, ever asked, why me? Never. Why not me, honestly? Like, maybe me, because I am a positive person. I can do something with this. You have to make the choice of, if this is your path, because this is the disease that you have, you make the choice to then do what you can with it. For me, it’s, let me advocate for research. Let me exercise and show people that you can exercise. Let me help folks know that there are things you can do to make yourself feel better and continue to live your life with this. Not all days are great. I’m not going to say that. I have some days where I just want to lay in the bed and, or where I cry, but that doesn’t mean that’s how it’s always going to be. There’s always another day. And you just try and, you know, you do the things that make you happy and care for those around you.
Could you talk about your involvement with the Parkinson’s Foundation?
So with the Parkinson’s Foundation, I have finished onboarding and training to be a research advocate. So I will be beginning, and I’m actually going to be starting soon, working through the Parkinson’s Foundation with researchers who want to, much like you had talked about, have a frontline interface with people who have Parkinson’s. When research is being done, whether it be on medication or technology, caregiving, lifestyle change, whatever is needed within the Parkinson’s community to have people like myself be involved, and whether it be on an advisory patient council, whether it be presenting to groups of people alongside researchers, reading material, reading different research, perhaps projects that might be funded by the Parkinson’s Foundation, just anything that they need people with Parkinson’s involved with because it is very patient, person-centered. Its research needs to be driven by what matters to people with Parkinson’s so that it makes a difference. Parkinson’s Foundation recognizes that I am the expert with Parkinson’s because I’m the one who has it. So they want information from the experts, which are those of us with it. Then also, I’m an ambassador, which just means I volunteer. I’ve been through training with them. So when events are hosted, for example, last month, there was an event in our community. I happen to live in an area where there are centers of excellence for Parkinson’s through the foundation, such as Duke Hospital, and UNC hospitals. So the program was managing advances in Parkinson’s with technology, as you were discussing, and DBS, deep brain stimulation, just the up-and-coming things that are going on. So I navigated the table that had all the information from the Parkinson’s Foundation and was there to ask or answer questions of other folks with Parkinson’s. Everyone’s always interested in how did you get diagnosed, what’s your journey, what medications are you taking, and that kind of thing.
What advice do you have for someone recently diagnosed with Parkinson’s?
I would just say when you decide to disclose, if you decide to disclose, your diagnosis is very personal to you. There is no right or wrong as to when you should disclose to your employer if you’re working, your family, or friends, it’s very specific to you. But know that when you do, you will be met with love, and you have opened up a community for yourself so you don’t have to suffer and navigate alone.
