Learning how to ask for help has been key in my life with Parkinson’s
To navigate the world, I have to be open about my needs
Before the pandemic, I traveled for work frequently — 40-plus weeks a year attending meetings and conferences for over a decade. I’d gotten used to life on the road, but early-onset Parkinson’s disease added new layers of difficulty, especially when it came to navigating in public.
When I was diagnosed in 2013, I got on a plane four days later and flew to Las Vegas for a big conference and trade show. That trip was hard, as I was experiencing tremors and gait freezing in an environment where I had to walk long distances, navigate social interactions, and attend events from 8 a.m. until 10 p.m. I was also just starting to take Parkinson’s medication, all while still hiding the fact that I had just received a life-altering diagnosis. Plus, you know, it was Vegas, with its lights and noise and overstimulation of all the senses.
I got through that trip and many others by learning several tricks and being open to help from friends and strangers.
Asking for the help I need
About four months after that trip to Vegas, I disclosed my illness at work and to my industry colleagues. I was fortunate that everyone was sympathetic, kind, and happy to help however they could when I was traveling. The only issue was that I didn’t yet have the language to ask for help, and my needs could change from minute to minute.
Anyone who has ridden the waves of Sinemet (carbidopa and levodopa) knows what it’s like to be “on” one minute and “off” the next. You walk up a set of stairs just fine at 9 a.m., and at 9:30, you’re shaking and barely able to stand. I barely knew what I needed, so how could I communicate it to those around me? If it was confusing to me, it was doubly confusing to others who saw me struggle. I had to learn to say, “Yes, I need help,” or “No, I’m good right now, but keep asking because I might need help the next time.”
One thing that helped was teaching my friends and colleagues to assist me in stealing their momentum. Gait freezing was one of my first and most troublesome ongoing symptoms. But I’d figured out that if someone came up from behind me and walked past my side, I could pick up the rhythm of their stride and would unfreeze.
People are quick to offer a steadying arm, but most wouldn’t think, “Hey, I bet if I walk by her, it will help her out.” It seems too weird, but it worked for me. People who knew me soon got used to it. They would see me freeze and offer to walk past me like they were taking part in a party trick. And to them, it was amusing. To me, being able to unfreeze was lifesaving.
I even learned to explain it to strangers. I remember crossing a street in New York City once, and a yellow-painted curb had me at a standstill. Parkinson’s was causing my brain to process the yellow line as a wall. After being stuck there through several light cycles, I flagged down a nice-looking couple and explained my situation. They walked in front of me, I got moving again, and I’m sure they had a story to tell at dinner about that crazy lady stuck at the corner.
There is no room for vanity with Parkinson’s.
I learned to carry a handbag with the right length of handles so that I could swing it in one hand and steal the momentum from it if no one was around to help me.
If another person exited with me in an elevator, I’d politely say, “After you.” They would think I was showing off good manners, but really, I was stealing their momentum to get me through the elevator doors.
I’ve navigated many airports, conferences, meeting rooms, and sidewalks with help from my tricks and my willingness to share the weirdness. I’m sure many of you also have tricks for navigating your world. Getting help isn’t just about asking for help; it’s about finding a language that helps you ask for what you need.
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.
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Comments
Jack Walden
I’m learning to take help when it is offered. My wife is fearless in her electric wheelchair. I can’t keep up, so she insisted in buying me one too. The price has declined over the four years she has enjoyed the first chair. However, we got in trouble in Lyon, France. She wanted to see the Roman amphitheater of the Three Gauls. Our cab dropped us off at the top and we couldn’t get another cab to pick us up in the traffic free. We started down the mountain lead by her determination. It was a steep trip down. I only fell once.