Traveling with Myasthenia Gravis

The first diagnosis of myasthenia gravis (MG) seems ominous. Will there ever be a return to “normal?” The truth is that we might have to redefine “normal” as we move forward.

But eventually, most people find ways to adjust their routines to support their health and their lives. And that can even include travel.

No matter how luxurious or carefully planned, travel inevitably causes disruptions to a normal routine. MG is a condition that feeds on any stress to the body. Travel may never be totally stress-free, but there are many things that can be done that reduce the risk of an unwelcome flare.

Adjust your schedule

First, realize your limitations. Shorten your daily travel schedule. If you once made that drive in one 8-hour stretch, now you may need several short drives with planned rest stops. And if ocular symptoms occur with fatigue, plan for a companion to help you drive.

Planes and airports are by their very nature stressful. Is a long flight more or less stressful than connections? You are the best judge. Don’t arrange a schedule where you must rush from gate to gate.

When you get there, pay a little extra for a hired car rather than a train or bus. And don’t schedule yourself to be on the road too early or too late.

Communicate your needs

Pack for the worst to enjoy the best. Carefully store your medication, with extras in a second location “just in case.” If you need any liquid in large quantities to take through TSA, get a note from your doctor. Pack it with a short description of your diagnosis and a list of drugs and procedures that you must avoid.

Contact the airline or train special needs office early. Let them know that you might need a different snack or extra thickened liquids.

I’ll admit that our first attempt to ask for such meal accommodations was met with puzzlement, but we persisted. Eventually, someone wrote us with questions and offers of accommodation, but it took time.

You may or may not need a wheelchair, but consider asking for one anyway. That allows a faster passage through TSA and preserves your energy for the end of the trip.

Plan ahead for hotels and restaurants

You will be far from your own kitchen. When people have swallowing issues, it’s always wise to prepare for eating out. That’s especially true when traveling.

Thickened foods? Bring packages of thickener. Don’t hesitate to ask the chef for chopped or pureed foods. Don’t experiment with very thin or very coarse foods while away.

At a hotel or motel, think about your needs. Extra pillows for sleep? Room service when you are tired? Late checkout? Don’t be shy.

And of course, sanitation is always a priority. With MG, even a common cold can be a threat. When the current pandemic has passed, masks and hand sanitizers will still be in vogue for people who might be immune-compromised or those who must regularly use immunosuppressant drugs.

Build in time for rest

When you get to your destination, don’t try to see or do everything at once. One short tourist stop then a nap? A good book by the pool? Develop your MG-appropriate schedule. At the end of the trip, you’ll be glad you did.

And of course, make sure you have “plan B.” Your diagnosis, your meds, your precautions should be available at any moment. “What if I crash?” isn’t pessimism; it’s confidence.

The bottom line for a traveler with Myasthenia gravis is to pay close attention to your body’s messages. Treat yourself well. Read your body signals. Go slowly, and cautiously. Focus on enjoying the ride.