At the age of 9, while learning to play the piano, I learned to have perseverance, to keep on keeping on, to turn the negative in life into a positive attitude and to never give up or say “I can’t do that.” I had no idea the lesson to persevere was preparing my life for the journey of walking the shoes of Myasthenia Gravis.
I would have never imagined when Gary and I stood at the altar over 40 years ago and said “I do,” that he would someday walk in those shoes with me. In fact, at that time, I had never even heard of Myasthenia Gravis (MG). Now, during the month of June, we are #MGSTRONG, and together, we “Turn MG Awareness into Action.”
In my mid-50s, I was living a very happy, healthy and active life. I had all the energy life had to give and even had extra at the end of a long day. I thought I had my life all planned out. WRONG! My last plan in life definitely was not to be slowed down by a rare neurological disease, but in 2004 I had a sudden onset of extremity weakness. After a couple months, it improved, but then I began to have fluctuating jaw weakness while singing. In 2006, I developed bilateral eye ptosis, which is eyelid weakness, along with facial and jaw weakness. After clinical evaluation and testing, I was diagnosed with MG.
You may question: What is Myasthenia Gravis? MG is a rare chronic neuromuscular autoimmune disease which causes weakness of the voluntary muscles that control basic movements we often take for granted: walking, talking, smiling, eyelid movement, vision, chewing and swallowing, arms, legs and breathing. Then there is the Myasthenia Crisis, when the diaphragm becomes too weak to effectively breathe, and the patient will often be placed on ventilator assistance. There are approximately 20 in 100,000 Americans who cope with the debilitating effects of MG. Myasthenia affects individuals of all ages, genders and races. The Myasthenia Gravis Foundation of America (www.myasthenia.org) is the only national organization dedicated to research, awareness and advocacy efforts to help MG patients.
It has been through the grace of God, who is my strength and my perseverance, that I stepped out of my comfort zone and became an active voice of raising awareness of MG, organizing the first Southern Illinois MG Walk in 2014 and taking my advocacy 4,000 miles on vacation with Gary at my side.
I am thankful I have the very strong support system of my family and friends. I feel blessed every day that my husband is my best friend and my MG caregiver hero, who even sets aside his horseback riding in Shawnee Forest when I have appointments on the calendar or require his assistance. If anyone in my life truly understands MG and walks in these shoes with me, it is Gary — my cowboy hero, who is my caregiver superhero — and God is our guide.
I invite you to visit the MG Walk webpage — mgwalk.org — to learn more about the Southern Illinois MG Walk, which has had folks from four states participate in previous years. This year’s walk is scheduled for Saturday, Sept. 25, at Fort Massac State Park with check-in at 9 a.m. and the walk at 10 a.m.
My MG walk page link is http://donate.myasthenia.org/goto/paulaburnettmcginnis.