“There are many family and friends who have cared for me along the way with generalized myasthenia gravis (including home health care). However, an outstanding and consistent caregiver in my gMG journey has been my daughter. Although I was over 1,110 miles away for some of my years with gMG, my daughter would do all she could to travel to me for critical moments along the way. Post diagnosis, there were times my treatments failed and the distance was challenging. Three years ago I decided I needed to be closer to her full time, as the distance between us was an added stressor for us both.
My condition and treatments have changed since I moved in 2022, but her care, compassion, and support are unwavering. She continues to manage her job, own apartment, friends, etc. and still make time for her mother, who has been #disabledbutable. I am BEYOND happy I am in the same state now. She has been there through multiple failed treatment attempts, extended hospitalizations for MG exacerbations, and, most recently, multiple surgeries needed for PLEX therapy treatment access. We still laugh often, cry occasionally, and take solace in the fact we have each other.
As I mentioned above, there are many ‘caring’ givers in my gMG journey I could honor for National Family Caregiver Month; however, I would like to thank my daughter, Bailey.”
– Laurie
“I was diagnosed with generalized myasthenia gravis in October of 2020. At that time I was living on my own in an apartment, and I loved it. Unfortunately in 2022 my symptoms got worse, and my five children — along with their partners — made the decision to have me move in with one of them.
At first I moved in with my son JT and his family, then I lived with my youngest son and his family through the school year. After that I moved back into JT’s home. In both houses I have my own room and am welcome to move back and forth as needed.
My sons that live in town take wonderful care of me. From taking me to appointments and talking with my doctors to making my meals, helping with making my bed, and giving me time with my grandchildren, they are so supportive. My daughter-in-law Amy, who is a nurse, has helped me shower after hospitalizations. They put up with my sad, depressed, and grumpy days and times I need to escape to be alone in my room.
My daughter and son who live out of town visit when they can and call or FaceTime so I can so I can see my other grandchildren. I have 10 grandchildren, aged 2 – 16, and they are the joys of my life.
My children, along with their families, are so caring, thoughtful, and loving that can’t even express how grateful I am. I am so thankful to have my family in my life and the love and care they surround me with. I love them and appreciate them more than they will ever know.”
– Robin