Why community is critical but finding it can be a challenge.
For many healthy, active young adults, seemingly minor aches and pains don’t usually sound alarms. So, the first time I noticed an unusual muscle twitch in my right ankle during the summer of 2018, at age 43, I didn’t think much of it. I only thought to mention it to my doctor after it persisted for a few weeks, but even then, I wasn’t particularly concerned. My doctor called it a “benign nuisance” that would hopefully stop on its own.
But after four years, an ever-increasing list of symptoms, and an untold number of tests that were inconclusive — I realized something was wrong. All of it led me to a doctor’s appointment in late December 2022 that would change everything.
“Do you have any other questions for me?” the movement disorder specialist asked empathetically as she handed me another tissue. It had only been 20 minutes since she leveled the news that I had Young Onset Parkinson’s Disease (YOPD), but it already felt like a lifetime. Through my tears, I squeaked out one last question: “Can you tell me how I got this?” She gently replied, “It’s hard to say, but it is exceptionally rare for women in their 40s. Possibly genetic. Or caused by environmental or lifestyle factors. Maybe just bad luck. There’s no way to know at this point.” She then handed me a packet of information and my husband and I headed home.
A few days later, as I flipped through the folder, I couldn’t help but chuckle when I noticed that every single photo inside was of an elderly, hunched-over, frail man. I assumed they had given me the wrong packet and turned to the internet for information on Parkinson’s Disease. A quick search returned many more images of older men, and a cursory glance at any of the major Parkinson’s Disease websites returned one page dedicated to YOPD, usually buried at the bottom of the site. I looked into local support groups but found most of them catered to a much older demographic as well.
It turns out my doctor wasn’t exaggerating when she said it was rare for a woman in her 40s to get Parkinson’s Disease. In fact, only about 400 women under the age of 50 are diagnosed in the United States each year. I suddenly felt exceptional, and not in a good way. Perhaps younger women were uncommon, but women in general made up 40 percent of those living with Parkinson’s. Surely there must be plentiful information on how it presents to almost half of the people living with it right? Wrong again. It turns out, women are underrepresented in Parkinson’s Disease research, and sex and gender differences are often not considered in clinical care. In those early days when I was desperate for information to give me a sense of hope and reassurance that I wasn’t alone, I was coming up short.
If data, facts, and resources weren’t going to give me what I needed, I decided to try and find personal stories of other women my age to be inspired by. I created a Parkinson’s disease-focused Instagram account and introduced myself to the world. Almost immediately, a note popped up from a force of nature named Keri Shaw, a funny, smart mountain-hiking mom who added me to a group chat with a message that said: “Ladies, meet our newest YOPD badass mama, Allie! Sorry you are in the club but we keep it real here and it’s better doing this with each other.” A quick reply from Danielle, a mother of four, endurance runner, and artist, welcomed me. More replies came in from Danna, Greta, and Alicia — all with feeds full of photos of their vibrant, amazing lives. Soon after, Ashley was added, a young mom who started rowing after receiving her diagnosis. I had found my people.
I began using my account to not only consume others’ stories but to share my own. From the outset, I wanted to be transparent and honest about what I was going through. That meant sharing the time I had a prolonged esophageal spasm that was terrifying and embarrassing. After I posted about it, I learned that almost 80 percent of people with Parkinson’s Disease experience some form of swallowing issues in their lifetime. I talked openly about the symptoms I have, the pain that the condition causes for me, and the emotional roller coaster that having an incurable disease provides. It was also the place where I learned about the good sides of this disease including a local Parkinson’s Disease rock climbing class that introduced me to another incredible group of people including 82-year-old Erwin whose climbing puts me to shame every week.
In the year since I created my account, it has grown to more than 60,000 followers, many of whom have Parkinson’s Disease or love someone with it. They now serve as my de facto support group, my unending source of inspiration, and my place of solace. Social media is often, justifiably vilified, but community is essential, especially in a crisis, and this one has become a lifeline. A bonus outcome is that I can use this platform to advocate while also dispelling stereotypes.
Parkinson’s Disease is the fastest-growing neurological condition, and while breakthroughs in science put us closer to a cure than ever before, the daily existence of those living with it remains incredibly difficult. Being diagnosed in my 40s means that, if I achieve the longevity I hope for, I will live with this condition for more than half of my life — a fact often fills me with fear about what’s to come. But by surrounding myself with an online community, I now have an endless supply of inspiration to keep me positive and hopeful and for that, I am deeply grateful. And with my policy work and advocacy, which is aided by the platform I now have, I’m also fighting for better testing, diagnosis, and, ultimately, a cure so that someday, people will remember Parkinson’s Disease not as the norm, but as the exceptionally rare indeed.
