"Together We Are "Turning Awareness into Action"

Together We are "Turning MG Awareness into Action

"Together We are "Turning MG Awareness into Action"

At age 9, while learning to play the piano, I learned to have perseverance to keep on keeping on, turning the negative in life to a positive attitude, and 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 forty years ago and said, “I do,” that He would someday walk in the shoes of MG with me. In fact, at that time I had never even heard of Myasthenia Gravis. Now during the month of June we are #MGSTRONG and together we are "Turning MG Awareness into Action.

In my mid-fifties I was living a very happy, healthy and active life. I had all the energy that life had to give with even had extra at the end of a long day. I thought that 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 Myasthenia Gravis, also known as 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 that we often take for granted; walking, talking, smiling, eyelid weakness, double 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 that cope with the debilitating effects of MG. Myasthenia affects individuals of all ages, genders, and races. The Myasthenia Gravis Foundation of America is the only national organization dedicated to research, awareness and advocacy efforts to help MG patients. www.myasthenia.org

It has been through the grace of God, who is my strength and my perseverance, that I stepped out of my comfort zone, became and active voice of raising awareness of MG, organized the first Southern IL MG Walk in 2014, and I have even taken my advocacy 4000 miles to HI on vacation with Gary at my side.

I am thankful that I have very strong support system of my family and friends. I feel blessed everyday 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 the 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 with location of the Southern IL MG Walk which has had 4 states (IL, MO, KY, & TN) participate in previous years. My MG walk page link is: http://donate.myasthenia.org/goto/paulaburnettmcginnis