This Sunday is National Siblings Day; a day to celebrate our brothers and sisters. Although the literature indicates there is no genetic link to myasthenia gravis, there are a select few that share the diagnosis with a sibling. We recently sat down with a longtime member of the MGA family, Sandy Gardner; Sandy shares her experience as well as her brother's experience living with MG.
Meet Sandy Gardner:
What is your name? Where are you from?
SG: My name is Sondra (Sandy) Gardner and I am from Kansas City, MO.
What is your role in the MG community?
SG: I am a patient and volunteer MG support coordinator for the Kansas City Northland Group.
Are you able to work? If so, what do you do for a living? Or, how do you spend your free time?
SG: I was first a mom to my two daughters until they started school full time. Then I started college to get a marketing degree but didn’t finish. I got the real estate bug and was an agent for almost 10 years. I started working for a senior community and took a social services role which led to a marketing director role for senior nursing homes and assisted living communities for over 20 years. I tried working for about 2 years after being diagnosed with MG but was unable to do my job. So, I applied for disability at the age of 60.
How long have you been living with MG?
SG: I have been living with MG for 14 years.
Prior to being diagnosed, had you ever heard of MG?
SG: My story of learning about MG is a sad one. I had heard about MG when my brother was given the diagnosis in 2000. We had no idea what it was at the time. We thought he was talking about multiple sclerosis (MS), but he finally convinced us it was a neuromuscular disorder called myasthenia gravis. His symptoms started with his eyes drooping which very quickly turned into generalized MG. We were all able to see how weak he became overall. He had days he could not hold his head up. He was going through a divorce and a mid-life crisis, putting brakes on his lifestyle. Back in 2000, there were not as many medical options as there are now. He started on lots of Prednisone at first.
My brother continued with his plans to buy his Harley Davidson Motorcycle when he turned 50 and although the family was very concerned about him driving with his condition, he insisted. My brother turned 50 in 2002; 4 months later he was in a collision with his motorcycle and was killed. We all felt like his eyesight had a lot to do with his death.
How did your brother’s diagnosis affect your own diagnosis?
SG: Several years after the passing of my brother, I started having some problems with my eyes. In 2007, I was struggling with walking and driving while turning corners. I didn’t realize it was double vision. I should have thought it was something like MG but my brother informed me that MG was not an inherited disorder.
Around 2008 my regular eye doctor referred me to a neuro-ophthalmologist. The new eye specialist examined me and said she was pretty sure I had a rare disease that I probably have never heard of called myasthenia gravis. I listened to what she had to say as she was getting my lab order ready to go to the hospital and proceeded to inform her about my brother. She couldn’t believe it. She even said, “Are you sure he had MG?” I gave her the name of my brother’s neurologists at NKC Hospital. She also said it was usually something that did not run in the family. I believe seeing what my brother experienced allowed me to have a better understanding of what I might experience with my new diagnosis.
How does MG currently affect you today? (symptoms/treatments/etc.)
SG: My MG is somewhat manageable at this time in my life. I’ve been on Methotrexate with prednisone for over 5 years now, and have had plasmapheresis when I’ve had severe infections. I did IVIG for several years but had to stop due to blood clotting problems.
I’ve learned not to panic when I have a MG episode at home. An episode usually starts with both eyes closing and then I can’t raise my arms or use them for anything. My legs are so weak I have to use a walker to transfer with help. My tongue will feel swollen and my speech becomes very slurred. Eating and drinking become impossible and sometimes my breathing becomes very shallow.
Between 2013 and the end of 2018, I was in the hospital more days than at home. On, and on, and on. There are lots of stories but the best story is no hospital stays since September 1st, 2018!
In your opinion, what is the biggest need you see in the MG community?
SG: I think the MG Community has improved over 15 years ago. We have so many more outlets available to us today. The MGA gives out MG packets to all new MG patients they can reach, sets up all the support groups, and organize all the wonderful meetings we have had online for the past 2 years. They make it possible to continue educating ourselves about our rare disorder. I think the medical field needs to know how important it is for MG patients to communicate & learn from others with the same disorder. I think physicians could communicate with their patients and tell them to contact the MGA as soon as possible.
How has myasthenia gravis impacted your own life (other than being physically symptomatic)?
SG: I really loved my job and wished I had been able to continue working. My husband and I took guardianship of our granddaughter who has special needs 23 years ago. Things did not get hard until after my diagnosis. My ability to help her has been very difficult, but have received help from the County Board of Services. She was placed in an ISL home a few years ago and we have her come home once a month for about 1 week.
What have you learned from having an MG diagnosis? Has it taught you anything?
SG: My MG has taught me to take everything one day at a time. My MG has taught me to enjoy my 3 grandchildren & learn a lot about baseball for my grandsons. Every morning that I wake up strong is a gift from God. I make the most of it and celebrate what I can do. Every morning I wake up weak I know I have the power to care for myself in order to assure myself a better day tomorrow. When I have the power to care for myself I’m assured the power to care for the ones I love.
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