Tools of the Trade: How I Live My Best Life With MG

Shawna Barnes avatar

by Shawna Barnes |

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It’s 4:30 a.m. on Thursday, and I have been awake since 3 a.m. My deadline for turning in this column is less than four hours away.

Why does this matter? I’ve been wanting to write about the tools that can help those of us with myasthenia gravis (MG) live our best life possible. I’m currently writing this column on my smartphone while lying in a hospital bed I have here at home and connected to a BiPAP machine.

Reaching a place of acceptance

I medically retired from the U.S. Army in July 2011 at 27 years old. I was unable to live by myself due to my health issues and had to move in with my parents. Fast-forward six months, and I started experiencing leg weakness that resulted in falls. I had to use forearm crutches and was later provided a wheelchair by the Veterans Health Administration.

In addition to these mobility aids, I had grab bars installed in my bathroom. Talk about a wake-up call. I felt too young to need any of this, but I did.

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The sudden onset of weakness, which I later learned was a symptom of MG, taught me many things, including humility and acceptance. I had to discover for myself that I could still do many of the things I enjoyed — I just had to do them differently.

Shifting my mindset allowed me to accept where I was at in life, and let go of where I thought I should be. This meant accepting that I needed a cane at age 30.

Some helpful tools

Various items may come to mind when we think about tools and adaptive aids.

I use many on a daily basis, including my smartphone. Not only does it help me meet deadlines, but I can also set reminders for anything. I sync my Google calendar with my husband’s so that he’s aware of my appointments, and communicate with him via text when I have no voice thanks to bulbar symptoms. My phone allows me to keep in touch with my providers, monitor my sleep, and identify trends on my BiPAP app.

I use an assortment of mobility aids, including a walking cane on my good days, forearm crutches on the in-between days when my feet are dragging just a smidge, and a wheelchair on the bad days when my leg weakness is pronounced. I struggle with stairs, so I have a stair lift between the basement and the main floor of my home. I sleep in a hospital bed at a 15-degree incline to assist with breathing. Half of the time I have my legs propped up as well due to edema, a lovely medication side effect.

On hot days — which for me is anything above 78 F — I wear a cooling vest, because the heat exacerbates my breathing issues. If I want to leave my house in the summer, the vest is almost as necessary as my mobility aids.

The latest tool in my arsenal is a different vehicle. We traded in our SUV for a minivan. I fought against that idea because I never saw myself as a soccer mom. But you know what? I love it. The van is easier to get in and out of, regardless of how weak my legs are, it’s comfortable to ride in and drive, and it has enough space to lug my wheelchair easily.

Those of us with MG have a responsibility to ourselves to live our best life, though that will look different for each of us. It may involve embracing various tools, but using them is a personal choice. It can’t be forced on us. My hope is that if you need certain tools, you can embrace them sooner rather than later. They take us from spectators to participants in life.

What tools do you use to make living with myasthenia gravis easier? Please share in the comments below.


Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to myasthenia gravis.

Comments

Arlene DeLand avatar

Arlene DeLand

My Myasthenia Gravis diagnosis was diagnosed following a near fatal car accident in which I had surgery for a broken neck and 7 other surgeries five years ago. Since that day I live in chronic pain, and have difficulty walking due to a back deformity and muscle weakness. I either use a walker or a cane on my better days at home, and a wheelchair in my kitchen. We are waiting for a chairlift so I can go from the first floor to the second; this will help me a lot. I also do not drive anymore because I black outed during this accident and a previous accident three years prior. Currently, I still black out and have dropped hot coffee on myself. My left eye droops when I am tired; I have trouble swallowing; I have difficulty breathing; and get exhausted easily. I am learning to take care of myself by listening to these symptoms that indicate I am tired and I need a break.

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Shawna Barnes avatar

Shawna Barnes

Thank you for sharing Arlene. I have chronic pain as well and can appreciate the struggles. I am glad that you are learning to engage in self care and listening to your body. I have found my quality of life improves the more I listen to those subtle signals my body gives off.

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2021 Myasthenia Gravis Survey Results

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Myasthenia Gravis News conducted a survey from Feb. 11-March 28 to gain greater insight into the characteristics of the MG community and disease management. Results of the survey have now been published. Click on the image to view the infographic, and click here to read the story.