3 tips for traveling solo with myasthenia gravis

For the first time since my medical retirement from the U.S. Army in 2011, my myasthenia gravis (MG) is stable enough that I felt comfortable traveling 12 hours to North Dakota to go see my folks. By myself.

The last time I got to see my mom was at my grandma’s funeral in 2017. It has been five years since I’ve seen my mama in person; five years since I got to give her a hug — until this month.

No, those aren’t typos. Yes, it was the first time in 12 years that I was able to go on a solo trip safely. My dad travels a lot, so I’ve had the opportunity to see him throughout the years, but Mom works in the medical field and was unable to freely travel.

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Traveling with myasthenia gravis can be scary, as so many “what ifs” run through the mind.

“What if my legs get too tired and I can’t react to dangers in the road?”

“What if my breathing is compromised, the meds don’t work, and I’m in the middle of nowhere with no access to help?”

“What if I start having bulbar symptoms and choke while driving?”

What if, what if, what if?

One thing MG has taught me is that we can’t live our lives in fear of the “what ifs.” They may or may not come true. Personally, I’d rather take the necessary precautions and live my life to the fullest.

My trip to North Dakota lasted nine days and was amazing. I enjoyed coffee dates, conversation, drywalling, and meeting the horses on the farm with Dad. Mom and I started a puzzle, had some great discussions, and relaxed for most of the time I was there. It was uneventful, relaxing, therapeutic, and monumental all at the same time.

Due to the success of my trip, I thought I’d share my top three tips for traveling long distances alone when you have myasthenia gravis.

Tip No. 1: Have open conversations

If you’ve read any of my columns, you’ll know that I’m a big advocate of open and honest communication. Traveling solo was no different. I discussed my concerns with both my husband and my mom. We created a plan for worst-case scenarios. During my travels, I had frequent check-ins with both of them.

It may seem like overkill to have to check in with your spouse and mom at the age of 39, but it wasn’t about control, but rather safety. The check-ins were part of the plan we devised together through our open conversations.

Tip No. 2: Take more than you think you’ll need

This includes meds. I made the mistake of not checking one of my bottles of Mestinon (pyridostigmine bromide). I took two bottles and thought I had plenty. Neither of them were full, so I only had an extra three days of an essential medication, not two weeks like I should have.

I took my bilevel airway pressure machine. I brought extra layers of clothing. My favorite pillow and blanket also made the trip with me. It was quite daunting to watch my husband load up the van as I was getting ready to leave. I felt like it was too much.

When it comes to traveling solo with MG, it is better to have it and not need it than to need it and not have it.

Road trip! Columnist Shawna Barnes takes her first solo trip in years, with her trusty companion, a service dog named Andy. (Photo by Shawna Barnes)

Tip No. 3: Build in down days

I know, that’s easier said than done. During conversations with Mom, I was honest about what I would need. One of those needs was to have at least a full down day for rest when I arrived, and one on the day before I left. I knew I needed that to feel my best for the drive. I did a lot of resting on the couch, avoided setting an alarm, and slept as much as I could.

Rest is critical and is not to be overlooked when planning a trip. It’s easy to overdo it with the excitement and adrenaline from accomplishing a major milestone.

It was good to see my folks. Taking the trip on my own was amazing. And it’s great to be back home, ready for my next intravenous immunoglobulin infusion this week.

Have you traveled with a chronic illness? If so, what tips for being prepared do you have? Please share in the comments below. 

Note: Myasthenia Gravis News 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 other 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 Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.