Weakness in Paradise: Traveling with Myasthenia Gravis

I was officially diagnosed with Myasthenia Gravis in the spring of 2017, even though I began developing symptoms two years earlier. Shortly after starting two daily medications, I was getting my symptoms under control and learning how to navigate the MG mindfield.

Three months after my official MG diagnosis, I’m boarding an airplane for a nine day, four island adventure in Hawaii. I was going with a best friend and for both of us, this trip would be our 50th state to visit.  

Our first day in Hawaii was spent in Honolulu, driving around the island of Oahu and enjoying our first real Hawaiian food and the beautiful weather. The next day we were up early at 5:30 in order to get to Pearl Harbor early.  We had to be in line at 8:00 am in order to get tickets to the USS Arizona Memorial.  After touring Pearl Harbor, we visited some other attractions before heading back to the airport, turning in the rental and catching our flight from Oahu to the Big Island. 

Arriving at the Kona Airport on the Big Island, it was late in the afternoon. We toured Kona, had a great dinner and got to see some of the sights, then called it a day. The MG was starting to cause a few problems, primarily neck weakness, but I was keeping up my meds and felt confident it was under control.

Getting up early and checking out of the hotel, we head for Mauna Kea, the tallest point in Hawaii. At 13,806’ above sea level, it can be exhausting even for healthy people, but what incredible views.  We followed the recommendations of the Maunakea Visitor Information Center and spent an hour at their 9,000 foot elevation location. This gave us a chance to get acclimated to the thinner atmosphere and buy some over-priced souvenirs.

I was really surprised to find I could breathe easily at the summit, and after taking in the views, it was time to return to sea level and tour more of the Big Island. We visited Volcanoes National Park, walked on old lava flows and witnessed the lava glow at night from the Halema’uma’u Crater. We even made it to South Point, the most southern location in the U.S. After that, it was back to the hotel and grab some sleep. The next day was when my MG really started rearing it’s ugly head.  I could barely hold my head up for more than a few minutes, and if I looked downward, I couldn’t raise my head back up without using my hands to help. I tried a slight increase of my Mestinon dosage, and that only resulted in abdominal spasms and more frequent stops looking for a restroom. The neck weakness remained.

Departing the Big Island on Hawaiian Air, we flew over Maui, our next destination. We had to fly to Honolulu, deplane, had a short layover and then catch a different plane to Maui. The airport was barely air conditioned, and the outside temperatures were typical tropical weather, 80’s and humid. Dragging my suitcase, CPAP and carrying my camera bag, my head was now permanently hanging on my chest if I can’t manually hold it up. I got a few strange looks from the flight crew but no one said anything

On the flight, I discovered that if I could sit slightly reclined, I could essentially balance my head on my shoulders and hold it up. While seated I could turn my head right and left with no difficulty, but if I was walking, I was looking down. And when you had to return your seat to an upright position on the aircraft, I was again forced to support my head with my hand.

The remainder of my Hawaiian vacation was filled with beautiful sights, some great food, and some scary respiratory issues that almost sent me to the E.R.  Because we had to carry all of our belongings from island to island, each flight was labor-intensive. Each time we landed, we had to then carry our belongings through the un-air conditioned airports, and load them on the airport shuttle to the car rental facility. Then unload everything at the car rental, load it in the car, then head to the hotel and unload. I think that this was my real downfall, all of the loading and unloading of our carry-ons and luggage, and multiple times we had to do this for each excursion. I was fortunate that my friend was a Respiratory Therapist and she kept a close eye on my breathing. We considered cancelling the rest of the island visits and just rest in Honolulu, but I felt confident we could make it.

We continued the trip visiting Kauai, the last of the four main islands of Hawaii. We had now seen Pearl Harbor, the Mauna Kea Observatories, and the active volcano at Volcanoes National Park. The beautiful beaches of Maui, the actual gates for Jurassic Park, all have been visited.  Almost all of our travel checklist was completed.

On our last night in Hawaii, we returned to Honolulu for our return flight home the next day. We were fortunate to get tickets to the premier Hawaiian Luau in Honolulu, Paradise Cove, but the MG was really getting out of control. Now I was dealing with neck weakness, difficulty swallowing, and GI issues. The luau was outdoors, but it was late afternoon and thankfully there was a nice breeze. The ocean breeze and the views helped moderate the heat and humidity. 

The food was awesome, but in order to eat it, I had to hold my head up. I discovered holding your head up with a hand beneath your chin just doesn’t work. I’m trying to chew and my head is bobbing up and down like a bobble-head doll. OK, time for Plan B. I used my left hand and pressed against my forehead, then fed myself with my right hand, all the while trying to lean back slightly in my seat. I was successful about 80% of the time, and the unsuccessful 20% was accumulating on my shirt. Yes, people were glancing in my direction occasionally and you could tell they had no idea why I was wearing my dinner. It was certainly an evening to remember.  

 

In Hawaii, I learned that “Aloha” is used for both “hello” and “goodbye”. However, the true meaning of “Aloha” is that of Love, Peace, and Compassion. I can honestly say that Aloha describes the Hawaiian people, they were truly the friendliest, happiest people I’ve ever met. “Aloha” is also what I get from this wonderful Myasthenia Gravis Unmasked Community, and from Rebekah, our brave, compassionate and beautiful leader.  

I have written this short story to hopefully inspire my fellow MG Warriors that travel with MG is not only possible, it can be enjoyable.  Just remember to consider all of the additional challenges you will be facing on your trip. Remember the weather can be a significant factor with MG, and so can significant elevation changes. I was very fortunate to have a good friend with me that was understanding and supportive. I would certainly make this trip again, but next time I would take it a little bit slower. I don’t intend to let MG control me, I’m going to control it. I just have to keep learning from my mistakes. 

Aloha!

Author
Bryan Lamb

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