Don’t wait for a health crisis to practice self-care

I was diagnosed with early-onset Parkinson’s disease when I was just 36 years old. At that time, my life was moving quickly. By all accounts, I was headed toward the peak of my career and traveling most of the time, often internationally. I’d been married for just five years, had a new nephew in my life, and was surrounded by friends and family who were all moving fast, too.

When I sat in the neurologist’s office and was told I had an incurable illness that would eventually stop me in my tracks, it felt like I’d hit a brick wall at full speed.

For a long time, I tried to maintain that fast pace. I took on new work challenges and kept up with a hectic travel schedule, determined to show everyone that I was fine. I didn’t think Parkinson’s disease would affect me at all. Any struggles I faced were my problem, and I was committed to handling them myself so that my illness wouldn’t affect anyone else. Looking back, I realize how misguided that thinking was. There is no outrunning Parkinson’s, and I wasn’t going to be the exception who somehow escaped its effects, no matter how fast I tried to run.

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I had to confront the need to slow down about six years ago when I underwent deep brain stimulation (DBS) surgery. In hindsight, I can see how deep my denial was. About a month before my surgery, I was at a work event in New York. I was on a new medication that was causing me to feel overly energetic, almost manic. I was caught in a state where I felt like I was physically vibrating from the medication’s side effects while simultaneously being unable to control my movements enough to eat or drink.

Despite my attempts to stay in control, I was falling apart in front of clients, colleagues, and friends. I was supposed to fly back to Boston the next day, but I didn’t sleep at all the night before. I was exhausted yet wired, and so dehydrated that I couldn’t get my medication into my bloodstream. I was feeling lightheaded and a bit delirious, but I was determined to make it home.

With the help of a wheelchair, I boarded the plane in New York, got off in Boston, and managed to get to the car that was picking me up. By this time, I was experiencing muscle cramps that left me in excruciating pain, and my mouth felt so dry it was as if I was chewing on a sponge. I couldn’t even manage to get small sips of water down my throat. Finally, I realized I needed to go to the hospital.

An ambulance was called to the freeway overpass where we had pulled off, and I’m pretty sure I frightened my driver for life. Suddenly, I found myself alone on a Friday night in a downtown Boston emergency room, feeling like I couldn’t breathe and thinking that I would never recover.

I remember the staff doing a sonogram of my belly, and the nurse saying, “Wow, you haven’t had anything to eat or drink in at least two days, have you?” I hadn’t even realized it, but it was true. I called my husband, still frantic, and told him where I was, but that was all I could manage. He rushed to the hospital, not knowing the severity of my situation. Fortunately, by the time he arrived about 90 minutes later, after I had received two and a half bags of saline solution and eaten a granola bar from the bottom of my purse, I was feeling much better.

I was still trying to pretend that I was fine and could handle everything on my own while I was publicly melting down and neglecting my own self-care.

I had to slow down. Other lessons have also tried to teach me this — clearly, I wasn’t a fast learner when it came to self-care. I’m still learning, but I’ve come to realize that there are worse fates than not outpacing the rest of the world. I have many years ahead of me living with this disease, and I’m starting to learn to savor the moments. Now, I measure progress by a more personal standard — one that allows me to work, enjoy my family and friends, and engage with life at a more reasonable pace.

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.