rare disease – MG Hope

Offering Hope and Love to Myasthenia Gravis Warriors

“Walking with us doesn’t have to be complicated, it just takes a choice.”

We read the well meant phrase often enough; “let me know if you need anything!” as we stare back through a screen, connected in the most disconnected of ways. But how many times do we find ourselves wishing that the cliched, albeit good intentions of another translated into practical help and support where we need it most, without the awkwardness or shame of having to send a message of S.O.S.?

Myasthenia Gravis came into my life like a whirlwind, it’s symptoms quickly escalating from severe fatigue to respiratory weakness in a matter or ten days. My family and I found ourselves in the emergency room four different times within a two week period, so severe and fast moving were my symptoms. The diagnostic process involved two spinal taps just 48 hours apart; the second spinal tap left me paralyzed from the waist down due to several rare complications. I was sent home a week later after being kicked out with a security escort, still paralyzed, after we insisted something was very wrong.

I spent the next six weeks in a wheelchair at home or confined to a bed due to the paralysis and my increasing weakness.

Concerned friends, family and neighbors dropped by and brought meals or called to check on us and we heard each time the invitation to call if we needed anything. But we found ourselves unsure how to ask, the needs were so great. One evening however, a friend of the family dropped by unexpectedly after a long day at work and he had with him a special gift; he had taken the time to build me a ramp so I could get down the step from my front door in the wheelchair.

After he was done installing it and I got to test out my new gift of freedom, he sat with us and visited. He looked at me and said something I will never forget; “Rebekah, that ramp out there? It is temporary. I made it that way on purpose because I believe that you’re going to walk again. And I want you to hang on to that.” He spoke with the grace and love of a father and I wept at his gift, overcome with emotion. He saw a need we didn’t know how to articulate and he showed up without us ever picking up the phone.

It has been seven years and like he promised, the ramp was needed for just six weeks, but it taught me a crucial lesson that I have never forgotten. We have opportunities in our lives to walk with our fellow human beings throughout many ups and downs. Some of us choose to stick around only for the good moments and others still simply don’t know how to respond to the bad, but those choices of investment change lives.

Over the years, I have heard countless iterations of the invitation to call or reach out if I need something and while I always appreciate the heart that is behind such an entreaty, I find myself thinking back to the unexpected gift of a ramp and how a friend took the time to quietly walk with me and show up in the middle of the messiness.

Sit with me during treatments, take me to the doctor, help me weed my flower beds or cut my grass, bring meals and paper plates, come sit and talk with me and forgive my messy home, call me once a week and tell me you’re thinking of me. Yes, it takes time and effort to pour into someone who is hurting, but it isn’t complicated. We just need you to show up, no matter what you are able to offer, because it matters far beyond what you could ever imagine.

I believe we have to learn how to walk with our fellow human beings in this life; how to listen with patient grace, how to find ways to use whatever talents or resources we have to connect, support and stay the course when things get hard and life overwhelms us. It is easy to offer the entreaty that we are available to someone if the person struggling takes the time to call, but it can be hard for us to take you up on that. We don’t want to burden you or interrupt your life and sometimes, the truth of it all is that we just don’t know what to say, we just need someone to show up and let us know that we still matter.

You see, it is easy to type something online and walk away when life is business as usual but it is a whole other thing when suddenly you are the one in need of support. After all, we once were like you too. Some come walk with us, let us tell you how we really are, no remedies or advice, no cliched responses; just the patience and grace to hear and affirm the truth of it all.

Walking with us doesn’t have to be complicated, it just takes a choice.

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

Meghan’s Journey with Myasthenia Gravis

In November 2016 I ran a full marathon for the first time, the following May I was in the hospital. My MG came on quickly and hard, in less than 6 months I went from running daily and being in the best shape of my life to being unable to lift my head. I first experienced double vision on and off and ended up going to urgent care when my face began to droop. Doctors first thought I was having a stroke since I was so weak and had some unusual symptoms for someone my age. I was lucky enough to find an ophthalmologist who referred me to my neurologist who had seen MG before.

During one of my lowest moments with this disease my husband found me on the floor barely breathing and had to carry me into the emergency room. Last year I spent a total of 18 days in the hospital and had two crises and was intubated. Like a lot of us MG warriors I am still working to find that magical combination of medications and treatments that allow me to function. You know you’re cool when you’re in your 30’s and on first name basis with your pharmacist. I now walk with a cane on bad days and the double vision has never completely left.

I am still coming to terms with being unable to do the same things I used to while trying to keep hope that I will go hiking and running like I used to. There are definitely days I still get depressed about everything that was taken and don’t handle it well. Since my diagnosis I have finally finished college and make big strides in my career, I might not be able to control my MG but I am going to make the most of the time I have while I can.

(The photos below were taken a little over 6 months apart.)

– Fellow Warrior

Meghan Pachas