What it feels like: Young-onset Parkinsonism

Many young people that will hide their Parkinson's symptoms because they're ashamed to talk about it.

Emma Jones 14 minute read April 28, 2021
Caitlin Nagy Parkinson's disease holds her young daughter.

When Caitlin Nagy was just 31 she started to notice small tremors in her hand. Concerned, she turned to a neurologist, who gave her deeply troubling and somewhat confusing news: it was a Parkinsonism, a condition similar to Parkinson’s disease, although the doctor couldn’t be sure if it was truly Parkinson’s, since her genetic tests were inconclusive.

Parkinson’s and Parkinson-related diseases, also known as Parkinsonisms, are progressive neurological diseases linked to a loss of dopamine production in the brain, according to the Canadian Guidelines for Parkinson’s Disease. Symptoms generally start out as a tremor (usually in one hand) which spreads to other limbs. Over time, a patient’s movements may begin to slow down and muscle stiffness may also occur. Impaired posture and balance are common.

In Canada, Parkinson’s and related diseases affect one in 500 people, with the average age of onset being 65 years old. Only 10 per cent of patients with Parkinson’s develop young-onset Parkinson’s, where symptoms begin before the age of 50.

Nagy spent seven years trying to find an alternate explanation before coming to terms with her diagnosis. Now thriving as a mom and managing a creative agency, she wants other patients of young-onset Parkinson’s and Parkinsonian-like conditions to know that they are not alone.

**Warning: This story includes comment related to suicide ideation.

This interview has been edited for length and clarity.

What led to you being diagnosed with Parkinson’s disease?

When I was about 31, I began having these tremors in my left hand. Particularly when I was working, I would have a lot of pain in my left hand and arm. I figured it was a pinched nerve or a muscle injury that I may have gotten from lifting something. I saw a neurologist who, after a series of CT scans and MRIs, said, “You’ve got Parkinson’s,” and then,”Come see me in another six months.”  That was really pretty much it.

My understanding of Parkinson’s was that it was an old person’s disease. I refused to accept the diagnosis and began investigating on my own. I spent the next six years trying every possible alternative therapy I could find. I tried elimination diets, I saw three different kinds of chiropractors and osteopaths, I did hypnotherapy, IV therapy, and had different types of massage and physiotherapy. I also explored two different types of acupuncture, different supplements, and saw three different kinds of naturopaths. I even travelled to the United States to get an MRI done on my shoulder to see if there was an injury there, but all of these things led to a dead end. It was so frustrating.

My neurologist later said that it’s a Parkinsonism, which is when you have Parkinson’s-like symptoms, but the disease is actually not Parkinson’s. Still, I just kept looking for alternative therapies. And all the while, my life is happening before my eyes — my career is starting, I’m engaged and getting married, and my husband and I wanted to start a family. I had been seeing this functional movement therapist, and he said that with this type of dystonia (a medical term used to describe a movement disorder in which a person’s muscles contract uncontrollably), you get better with pregnancy. In fact, he said I would probably feel better after the pregnancy.

So we got pregnant. My symptoms were getting worse and [we decided] if I don’t get pregnant by the end of the year, then we’re going to try medication. That was the only thing that we had not tried. I really didn’t want to go that route because I had kind of a resistance to Western medication versus Eastern medication. Also, I really didn’t believe my diagnosis — I didn’t know anybody my age that had my diagnosis. The people I saw who had Parkinson’s were over the age of 60 or 70.

I did end up getting pregnant and it was a wonderful experience; we found out that we were expecting on Christmas Day.

Did your symptoms get better?

My first trimester was tricky. Initially, I would just call it my tremor, not Parkinson’s. It was mainly in my left hand and my left arm, and then it would transfer down my legs sometimes.

By that time, I had discovered that the tremors were linked to my menstrual cycle. Day one to day 18, things were manageable — I had a shaky hand, but I was able to manage. Between day 18 and day 28, things would progressively get worse, and the last three to four days before my cycle ended were absolutely horrible. So, I began to think that all of this was hormone related, so I explored how I could fix it with hormones. That’s when I saw different naturopaths, and we tried to managing things with supplements, like natural forms of progesterone.

Based on what everybody was saying, I thought I would feel better when I was pregnant. I was so excited to not only be pregnant, but potentially have the symptoms go away for the next nine to 10 months. But what happened was the opposite. The first trimester the tremors were in hyper-overdrive. I was shaking all over the place to the point where my friends’ kids would ask me, “Why are you shaking? You’re the shaky lady.” This was so heartbreaking and disheartening as a mom, to wonder if my daughter would have to deal with these kinds of comments.

In the second trimester, my symptoms were even worse — I lost my energy and had a lot of fatigue and pain in my body. By the third trimester, I was pretty much bedridden. I had major loss of balance and freezing of movement, but I could crawl across the floor to get somewhere. I could walk across the room, but not without holding on to something and falling down. My husband had to cut my food and cook all my meals for me. I couldn’t get dressed on my own.

I was terrified. Things just kept getting worse and worse as the pregnancy progressed, and I couldn’t help but wonder if I was going to be a good mom, how was I going to breastfeed my daughter and change her diaper? Would I be able to pick her up and carry her down the stairs? It was so scary and so depressing. There were also so many people in my life who just didn’t understand what I was going through. They would say things like, “Oh, you know, you’re fine.” There was just no empathy and it made it feel like what I was going through wasn’t valid.

So, I totally withdrew. I wouldn’t go to the grocery store or shopping, or out to see friends because I was so ashamed of what my body was going through. You know, you’re supposed to be pregnant and glowing and feeling amazing and that was not the case for me at all. I could just barely get around. Luckily, I was able to take my daughter all the way to term, so at 39 weeks I delivered. I had the easiest delivery of all time, for me, it was a piece of cake. I think my water broke at 5am and I delivered her by 7:30pm, and I was in actual labor for maybe an hour and a half, maybe two hours.

Living with health issues as a new mom is not easy.

Being a first-time mom, [I was] terrified of how I was going to handle it. Picking her up and learning how to breastfeed was so scary. Holding a little infant’s head and have her feel she’s safe is hard — babies’ necks are wobbly. I felt like I wasn’t doing the right thing.

I also had postpartum depression, where I felt like it would be easier to end my life. I felt like it was easier for everybody else and I didn’t think that there was going to be any solution. It got to the point that when I breastfed, I would have a huge tremor and sweat attack and I couldn’t move — it was like I was frozen. I couldn’t pick up my daughter, I couldn’t sit up, I couldn’t even walk across the room.

Luckily, my mother-in-law is a retired labor and delivery nurse and she suggested that that breastfeeding was really too hard on my body. [She encouraged me] to go try formula. I felt like I was failing as a parent, failing as a mom because I was unable to provide my daughter with nutrients. But switching to formula allowed my body to settle a lot more, and things started to get a little bit better every day.

When I saw my neurologist to see what could be done to ease the symptoms, we decided to try medication. It was such a high for me. I could walk around the room without limping, my left arm wouldn’t shake. I did a full-on dance party in my office that day, just jumping around for a solid two to three hours. It was like being reborn again. It felt so amazing.

Was this you coming to terms with the diagnosis?

A month into taking the meds, I began to think that, yes, maybe I do have Parkinson’s and maybe I just need to be okay with it. There is still a part of me that hasn’t accepted that I have Parkinson’s, a part of me that still thinks there’s something else going on, but I constantly remind myself that Parkinson’s is what it is. I reached out to Parkinson Canada, and they recommended an online Toronto-based support group.

Then I started to realize that there were other people my age that had this. I saw videos of people with the same movements as mine. It was so validating to know that I wasn’t the only one. And these people weren’t over 70 or 80, they were in their 30s, 40s and 50s.

How does the medication work?

The meds only last for three hours, so you take the meds and your body goes through a spike where it’s like, “Dopamine hit, great.” And then within that spike, for people with younger onset Parkinson’s, we might get what’s called dyskinesia, where your body just starts twitching and moving and wiggling and you can’t control it. You go from being frozen and shaking to like, super loosey goosey, super dancey, all over the place. For example, I’d be sitting in a chair in a dyskinesia spike and I’ll be wiggling super hard, my chair will be squeaking and I can’t sit still. I can’t control it. That part is frustrating, and it usually lasts about 30 minutes for me. Then it dies down and there’s this great feeling — I’m on a kind of super high dopamine buzz where I’m super motivated, everything’s going really fast and I’m getting things done. And then, right before the meds are about to die off, I get one more spike and go through another dyskinesia hit for about 30 minutes.

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Finally, this really strange thing happens when the meds wear off and I’m really calm for about 30 to 45 minutes where I feel normal — I’m not super buzzed, I’m not feeling like I’m on fast forward, I’m not twitching or shaking or freezing. And within those 30 to 45 minutes I know that I’m due for my next dose and then I go through the whole cycle again. That happens about four to five times a day for me.

When did you tell your friends and family about your diagnosis?

Through all of this I hadn’t told anyone, after all, I had refused acknowledge it for the first six years. When I was approached by Parkinson Canada to be involved in the No Matter What campaign, I thought that this it would be a perfect way to come out to my friends, family and coworkers. Before that, I had just made the excuse that I had some health issues. I was afraid to say that it was Parkinson’s because of the stigma that went with it, such as I wasn’t going to be able to do anything, my career will be ruined, etc.

I used No Matter What to come out in January and the outpouring of support was so amazing. It was so great to be okay with it, and be like, “Yep, I have Parkinson’s, and I don’t have to explain it to the next time I see you, because you’re going to know already.”

Knowing what you know now, would you have done anything differently?

It’s been scientifically proven that staying physically active three to five days a week can slow the progression of Parkinson’s. If I had known that seven years ago, I would have tried to slow the progression back then. I currently work with a personal trainer and we do different plyometric exercises twice a week. I also work out on my own three days a week. The key is to make sure that you’re always doing something different, and not repeating the same thing over and over so that your brain is forced to try new motor movement and create new neural connections. I have seen such an improvement in my motor functions.

Besides medications and exercise, are there other things that help?

Parkinson’s doesn’t just affect you physically; it can trigger uncontrollable anxiety where you will be feeling anxious and you don’t even know where it’s coming from. It also triggers apathy, which is this really lazy feeling where you’re just staring into space and you feel super unmotivated. For me, it was really important to be able to identify that and acknowledged that it was the Parkinson’s that was doing that. Now, if I’m having anxiety for no reason, I can step back and say, “Okay, why am I feeling anxious?”

Being able to acknowledge and separate the disease from the emotion is really important. I do also take anti-anxiety meds, and that has made a huge difference. I also use CBD as well which helps if I’m having a drop in my meds so the anxiety isn’t so overwhelming.

Of course, getting a diagnosis like Parkinson’s can cause anxiety. But is there a deeper connection between mental health and the dynamics of the disease?

Yes, there’s a huge mental correlation between it and mental cognitive function. I think that when patients are diagnosed, there’s not a great support program. There’s no one to say that you’re going to hurt and you’re going to suffer from anxiety, that you need to focus on cognitive behavioural therapy and get support. Also, that the anxiety you are experiencing is actually a part of the disease, not because you’re a bad person. There should be like a disclaimer, like: “You may feel symptoms of denial for the first seven years of your diagnosis.” Michael J. Fox felt that way as well. He tried to hide it from his whole family.

It sounds like emotional support is really important.

We need therapists that have experience working with people with PD or maybe have PD themselves, because it’s really hard to relate to anybody going through it, if they don’t know what it’s like — especially at a young age. There are so many young people who will hide their symptoms because they’re ashamed to talk about it.

What would you tell someone else who is young and facing Parkinson’s?

I want to make sure that everyone who is in their 20s or 30s, who might be newly diagnosed and not know how to handle it because they don’t have information —  there are resources out there. They should be reaching out to people like me and Parkinson’s Canada to learn what they should be doing to manage better and that there is life after Parkinson’s.

I really truly believe that this disease is curable. I think that we are so far ahead with technology and medical science right now that we are going to figure out a way to understand this condition.

But getting support isn’t just on the person who is affected, right?

There also has to be some investment in educating people, especially young people, on what a diagnosis like Parkinsonism is and what it means. My mother-in-law went to a support group meeting because she thought it would be good to understand what was going on with me, but no one was my age. It was even mentioned that whenever young people came to the meetings, they would leave. I really want to change that. I would love to advocate for younger people who are going through this so they feel a sense of unity, support and relation between what they’re going through and what somebody else around their age is going through.

If you or someone you care about is living with Parkinson’s or a Parkinsonism, there are resources available to help provide support, education and advocacy. Contact Parkinson Canada for more information.


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