Terri Roark’s Journey with Myasthenia Gravis: Embracing Help and Community 

Terri Roark’s MG journey may sound familiar to many with its sudden onset of unpredictability that changed her life forever. It began on a Sunday much like any other, filled with routine activities: attending church, enjoying time with friends, and relaxing at home. However, that afternoon, while watching TV, her vision suddenly became blurry. 

Terri was no stranger to living with disease—she had been diagnosed with Fibromyalgia at 30, which had accustomed her to the need for extra rest throughout the day. Though these new symptoms were unfamiliar, she took time to rest her eyes, believing rest would help, but her vision issues persisted. She quickly confirmed an appointment with an optometrist but for many months her symptoms and a diagnosis remained out of focus. 

Getting a diagnosis can take time. MG symptoms may lead medical experts down various diagnosis dead-end roads. When Terri’s MG was confirmed, eight months had passed and with all of the testing doctors discovered she also had Dandy Walker Malformation Variant.   

“I actually think I was living with MG for some time before my diagnosis,” Terri reflects. This realization is common among those with rare diseases, where subtle symptoms can be mistaken for minor issues until they become unignorable. 

With the diagnosis, Terri felt a sense of relief knowing treatment was available. However, she did not anticipate the MG crisis that landed her in the hospital. “I have extreme reactions to medications, so even while going down the path of finding the right combination of therapy, the medications were a shock to my system. I was simply overwhelmed by this diagnosis on top of my other conditions,” she shares. In the ER, IVIG treatment significantly improved her vision, but a subsequent crisis a few months later proved more challenging.  

Terri’s second crisis was more intense and particularly traumatic, leaving her feeling vulnerable and scared. “I expected to feel better right away, and it terrified me to not feel well for months,” she recalls. Yet, amid the fear, Terri found solace in her support network. Friends took her on a rejuvenating vacation, and their ongoing support has been invaluable. “I have a good support network where I live—friends who look out for me and point out when I need help. These are people who know me so well and truly see me.” 

Terri also has a strong community at her church, where friends offer rides, lunch outings, and companionship. Accepting help was humbling for Terri, especially after her diagnosis, when friends gifted her a larger TV to accommodate her vision issues. “It’s hard to accept generosity, but it makes a world of difference,” she admits.  

Terri’s advice to others is to be proactive and informed. “Read up on your conditions. Understanding what’s happening in your body makes you a better self-advocate. Don’t wait to be told—seek knowledge.” 

Diagnosis and Early Signs

Diagnosed with myasthenia gravis (MG) in 2016, I believe my symptoms started much earlier. Subtle changes in my body hinted at an issue, but like many others, I ignored my inner voice. Looking back at old photos, the signs were there—a droopy eye as far back as 2013. Despite gradually gaining weight and slowing down in some ways, I stayed busy, powering through days, weeks, months and years without considering something was wrong until I couldn’t ignore it anymore. My wife was the first to say something, but by then the disease was much worse than I probably realized. A fellow volunteer, who happened to be a doctor, suggested the possibility of MG. Following many tests, the diagnosis was confirmed, and the rollercoaster ride began.

Struggles and Adjustments

The diagnosis was shocking, but the subsequent months were worse. My doctor prescribed prednisone but the disease in my body was stronger and my condition worsened. My neck muscles weakened and ached, making it difficult to hold my chin up. Chewing became tiresome, and moving around my home and office was a struggle. Simple tasks like walking down the hall or carrying a
computer bag became monumental efforts. During the worst phases of my MG, I could barely carry anything heavier than a gallon of milk. Breathing difficulties often led me to fear I was having a heart attack. The uncertainty of what lay ahead forced significant life adjustments, including updating wills and quickly altering my daily activity. Most importantly, I came to depend heavily on wheels to transport everything. If it could roll, it did. My wife, who was already planning to retire, did so with the thought that she would need to become a full-time caregiver. So far, she hasn’t needed to step up in that way and I’m grateful.
Turning Point and New Normal Improvement came with a change in medication. I began feeling more energetic, my neck pain eased, and breathing became less laborious. The stairs in my home no longer presented a challenge, and I could stand up straighter. Focusing on my body and adapting to the new normal took time, but I got there. Today, I’m not symptom-free, but I feel good and have learned to pay closer attention to my body and slowing down when symptoms worsen.

Support Network

I have a very strong support network in my wife, my children, and nearby friends. While I know my wife worries, she never stops me from living my life and doing what makes me happy. She strategically intervenes for a lunch break to check in and ensure I take breaks throughout the day. And my wonderful friends, many of them I know through volunteering, watch out for me and pay
attention to my well-being.

Ongoing Battle

Unfortunately, my MG is rearing its ugliness again—this disease doesn’t go away, which is why everyone with MG learns to accept regular doctor visits. A recent blood test has raised concerns for my doctor, but we are collaborating closely—he’s adjusting my medications, and I am slowing down until the tests indicate better control. Despite the clinical indicators, I feel healthy, have lost weight, remain active, and continue to fill my days with community service.

Community Service
Volunteering drives my day, and I am determined not to let MG slow me down. My community service work gives me purpose and motivation and helps me to move through each day. I hope that sharing my journey shines a light on the importance of listening to your body, building a support system, and maintaining a positive outlook to carry you through the difficult days.