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.
