Danielle Dinger is a ceramic artist who has been living with Parkinson’s Disease for 4 years. The onset of her symptoms, particularly a tremor that started in her hand and spread to her arm and leg, initially led her to dismiss them as stress or caffeine-related. When the symptoms persisted, Danielle sought medical help and received a relatively quick diagnosis, something she feels fortunate about given the often lengthy process others face.
Danielle’s lifelong passion for physical activity, particularly long-distance running, has played a crucial role in her approach to managing Parkinson’s. Motivated by a desire to raise awareness and foster compassion for those living with Parkinson’s, Danielle shares her story to inspire others to embrace a positive mindset and actively combat the disease.
So it was 2020, and that seems to be kind of a common theme with a lot of people that I’ve met. That year kind of brought a lot of symptoms or things that people were struggling with brought it to the surface. For me, the most prominent symptom was a hand tremor. The tremor started in my hand and kind of went all the way up my arm on my right side. I kept just pushing it off and thinking, you know, it was caffeine, it was too much coffee or stress. I just basically ignored it until it went down my right leg, too. And one day my mom stopped over, and she immediately, as soon as she stepped in the house, she saw that my arm was shaking. And she said, what is going on? It kind of took that somebody not seeing me for a while and then seeing me and seeing that there was something really obviously different. So I made an appointment with a general practitioner. In my head, I was like, I’m sure it’s just stress. She kind of agreed with me, but she said, well, we should probably see a neurologist anyway. So a few months later, I saw a neurologist, and she had me, like, tap my fingers, tap my lap, tap my feet. I mean, it felt like five minutes. She told me that she suspected I had young onset Parkinson’s disease, which was really completely shocking to me. I mean, of course, I was googling hand tremors constantly and trying to differentiate between an essential tremor and a Parkinson’s tremor, but I just thought I was too young. So, I just discredited it. I drove home from there just in shock, and she ordered a DaTscan for me, which was a couple of months later. That confirmed what she suspected, as it was an abnormal DaTscan. So, yeah, 2020 of November is when I got my diagnosis.
What was the initial impact of your diagnosis on your life?
I feel fortunate in that it was a pretty quick diagnosis. I’ve heard a lot of other stories where, because the person was young, it just took years for them to figure out. Even though there’s nothing really fortunate about this diagnosis, I guess I feel like it’s good it didn’t take too long. So it really was, you know, that clinical diagnosis was within minutes. I didn’t love the first couple of neurologists I saw, but I think it was within six months that I found somebody that I really felt like was a good fit for me.
I felt like my life was shattered. It was really absolutely devastating. I felt like everything that I had planned for my life was no longer a reality or something I could count on. And I think quick searches online just give a really harsh prognosis. They’re generally geared towards later-onset Parkinson’s or traditional Parkinson’s disease, whereas in time, I’ve learned there’s a huge difference between young onset. But initially, I was absolutely crushed and devastated. I mean, as broken as one could be. And during the pandemic, too, was just lonely. I think everybody was dealing with kind of that isolated, lonely feeling. So broken and shattered, all those words were kind of where I was at for a good, I don’t know, six months, eight months or so.
How did your family react to your diagnosis, and how did you handle discussing it with them?
Well, let me go back to starting with kind of demographics, or where I’m at. I’m 47 now. I was 43, gosh, now I can’t remember. It was four years ago. So 42, 43 is when I was diagnosed. I’ve been married for 25 years. I have four children, ages 12, 13, 17, and 19. Let’s see. For my younger kids, I didn’t really use the word Parkinson’s as much because it wasn’t as relevant. They didn’t really know what that meant for my older two. You know, I had been using that word with my husband in conversation, so they were aware of that. So I did use that word and that diagnosis with them. I think my oldest was 16 or so at the time. He understood that the most and was probably physically looked the most affected by that. It was a somber time. We had a lot of prayer in our family. My husband’s a pastor. We’re a very faith-filled house. And so we had a lot of time together, just kind of relying on God and praying together. I mean, I tried to not ball in front of my kids, but they definitely could see that mom was sad, and mom was affected by this.
How have your symptoms impacted your work?
I’m a ceramic artist or a potter. I have a home studio. Working with my hands, for sure. And so that requires some, you know, I don’t know, like, patience and deliberate hand movements. With tremors, it works maybe differently than some people would think, where if I have a shaky hand, you’d think, how could you paint a straight line or something? But, you know, it’s a resting tremor. So it’s more like if my hand is sitting in my lap, it’s going to tremor more. But definitely, there are internal tremors that we experience with Parkinson’s, too, that can affect my work. So, I mean, I’m not usually in front of a lot of people, like, so I don’t have a ton of social stress or anxiety. With some occupations, I’m usually by myself in my studio, so I can deal with it there. Some of the, I guess, troubling situations kind of I put myself in is I just get too into my work, and I don’t want to stop and go upstairs, take my pill like I need to, and I’ll just kind of power through it. But I didn’t, you know, I didn’t have to leave a job or switch positions or anything because I’m self employed. So that’s just kind of how it affects me is just my physical symptoms will sometimes affect me more than other times.
How do you monitor and track how your symptoms fluctuate in response to different situations?
I feel like my tremor is a barometer of how I’m feeling, even if it bypasses my awareness. You know, I’m not really self aware. I kind of just go with the flow. But I’ll notice that when I’m at church or when I do speak some public speaking or if I’m even at a party or some kind of social engagement, I might not feel in my head like I’m nervous to be around people, but my tremor will go crazy. So, yeah, if I’m nervous, if I’m sad, if I’m telling an intense emotional story, all my symptoms, my voice, this hand will gesture wildly, and then this hand is kind of, like, stiff, or I’ll be shaking. So, yeah, all of that is like, it’s up and down, for sure. Whether it’s my on or off time with meds or if it’s social settings. That would be really cool to have all that monitored on a watch.
Could you describe your personal approach to managing your condition?
Well, thankfully, I’ve always been very physically active. I’ve been a long-distance runner my whole life. When I got this diagnosis and learned that, hey, there is a tool that we have access to that can slow progression. Because initially you hear there’s nothing you can do, things are only going to get worse. But then when you learn, like, well, exercise, intense exercise is beneficial, and it’s proven to be beneficial in slowing progression. Then I thought, hey, that’s empowering. So I upped my game on running and working out. I love being outdoors. So trail running is kind of my thing, running long distances, running through trails, being in the woods, being in nature, that’s something very helpful for me.
What are the non-motor symptoms you struggle with the most?
Yeah, and that’s a nice question, too, because a lot of people might not know about the non-motor symptoms. I think probably the most heartbreaking or maybe one I get most insecure about is the facial masking. The muscles in the face are just kind of more stiff. People ask often, like, are you mad? Or why are you so mad? Or can’t you smile more? And so I have to remember if I’m just resting to try to make my face look like I’m happy to be there because I usually am a very positive, content person. But my face might not always relay that. Some other non-motor symptoms are that I struggle with is word finding. I mean, I’m doing pretty well right now, but a lot of times I pause and halter quite a bit in my speech. Now, I’ll start doing that all the time now that I talk about it. What else? Just like short-term memory, I think I struggle with it. Apathy is a big one that’s frustrating because that’s something like, you don’t care that you don’t care. But even though, like, I do care, but when I’m kind of in it, I’m not aware. I can just kind of lose some of the ambition that I might have had before to have fun or to do things with my kids or to initiate. That’s something I’ve really stopped doing, is initiating contact with friends or going out and doing things. That’s not me.
What changes have you noticed in your social interactions since your diagnosis?
I think it has affected that I am an extrovert, only that I get built up or energized being around people. But I’m also pretty quiet and shy. So it’s kind of a, I don’t know, unique mix of the two. It’s weird because I want people to know what I struggle with, but yet I also don’t want to talk about it. I don’t want to bring people down or make people feel sorry for me. So I’ve found talking about it with a few other people that I’ve met who have young onset Parkinson’s is a great outlet. And then we know we’re not bringing each other down or you know, we’re not going to feel sorry for it. We just get it. But, in social settings, I guess it can be hard because I might feel really anxious, and yet I don’t want to. I don’t want to make anyone else feel uncomfortable because I’m uncomfortable.
What motivates you to share your story online?
I guess the overall picture of why, like, why I’ve shared my story online and why I would be totally willing to share it in an interview is because the big picture is I want more awareness of this disease. More awareness means that people understand it better, instead of judging that person’s shaky, or maybe that person’s drunk, or maybe that person totally doesn’t care about anything. Bringing awareness helps people understand to have more compassion. But definitely for others who have this diagnosis, I think we have this choice between being a victim and letting the disease steal and rob the rest of your life or choosing to be a victor. That’s what I’m choosing, and that’s my hope that if anything comes of this, that I can encourage people that we have that power to take charge and become a victor through it. You know, we have tools in our toolkit to fight this. We have a positive mindset that we can take. We have exercise and we can move our bodies, and all of that will help us overcome. So that’s why I would say yes to this is possibly encouraging somebody else to kind of get out of that funk of, you know, just feeling like life’s over because it’s not.
What changes have you noticed in yourself after the diagnosis?
I think the first thing I noticed was just a real strong empathy for others and an understanding that I couldn’t have gotten any other way. You can listen to people’s stories or their hardships and you can feel for them, but when you’ve gone through something really difficult, it brings you to another level of understanding and empathy. And that’s a really beautiful thing that I’m thankful for, that I can share in understanding, and I can offer comfort because I can say, maybe I haven’t been exactly where they have been, but I have maybe been close or in a similar situation. Another thing it’s brought is just the kind of awareness of the brevity of life, and that life is short, and it’s a gift. So gratitude for really everything, the good and the bad, because I believe that God will work good out of hardship, and that gratitude just brings peace of mind and a positive mindset.
Who or what are your main sources of support in your journey?
Well, my husband is really supportive, and he knows me better than anyone. He’s able to take me by the shoulders. If he notices I’m in some kind of funk or I’m really anxious, he can very gently help guide me out of it. I think another really great self-care tool I’ve learned is just the ability to say no to things which maybe younger me in my twenties and thirties, you know, I would easily overextend myself by just committing or feeling, like, bad. You’re feeling guilty if I didn’t do something. And I’ve learned that boundaries are healthy and normal and good and necessary. So I don’t really need to feel like I even need to explain myself sometimes. I can just say, no, I can’t do that.
What advice do you have for someone recently diagnosed with Parkinson’s?
Well, I remember in one of the forums, I think it was on Facebook, and it was some young onset Parkinson’s. I had written right when I was diagnosed, something about kind of like a cry for help. Out of the 50 comments, I think there was one that said, it’s not the worst thing in the world. That comes back to me a lot, you know, is like, it’s not. There’s a lot worse things that could happen. I could have gotten in a car crash yesterday and not be here today. Like, I’m still here. So that’s what I would tell somebody, is it’s not the end of the world, and there’s a lot more to come.
