MDA For Strength Independence & Life

Myasthenia Gravis (MG)

Living With

For more stories of families living with MG, see our MG stories on Strongly, the MDA blog, or MG stories on The Mighty.

Dear Friends:

In 1997, I started to feel weak and tired all the time, especially in my neck. Basic functions that I'd always taken for granted — like chewing, swallowing and talking — suddenly became difficult. One of my eyes began to droop and my arms felt weak.

I hoped these were signs of some temporary illness, but my symptoms continued and, finally, physicians at an MDA clinic near my home discovered I had myasthenia gravis.

About three years after this diagnosis, I became quite ill and required a variety of medications, therapies and treatments prescribed by my doctors. I worried about how having this disease would affect my future, my family and my career as a pediatric psychotherapist, which requires a lot of talking with clients and health care professionals.

The good news is, I've essentially recovered; I’ve been able to resume a full schedule at work, with a few accommodations to help me conserve my energy, and to continue to do my home gardening, which I love. Now, I don't worry so much about MG.

If you or someone you love has just received a diagnosis of MG, you'll learn, as I did, that a variety of treatments can be used to control it. By learning more about MG and by partnering with your physician, you'll discover that you can become an active participant in your treatment plan, adjust to your diagnosis and take control in maintaining the quality of your life.

These MDA myasthenia gravis information pages will provide you with essential information about the symptoms of MG and the best treatments for it, which are different for each person.

You'll learn that MG causes progressive weakness and fatigue in the body’s voluntary muscles, without affecting the musculature of the heart. Although it can weaken the muscles that control breathing, MG usually doesn't shorten life expectancy. You'll find details about these treatments — from drugs to surgery and other procedures — that will help you discuss your options with a physician.

The Muscular Dystrophy Association can help guide you through this process in many ways. The doctors at my MDA clinic have established an appropriate course of treatment. I visit the clinic regularly, and they continue to adjust the treatment to any changes in my needs. The local MDA staff were there for me on the day I was diagnosed and have been available for support ever since.

Since my diagnosis many years ago, I've continued to work, and my husband and I have raised two children who are now adults. I lead a very active life and in addition to my gardening, I enjoy community service, sailing, travelling and the arts. At times, I've had to make adjustments. When I've had episodes of extreme weakness, my family has been there to help me.

Changes at work can be challenging, but remember: If you have lasting or recurring disability from MG or any other disease, the law entitles you to reasonable workplace accommodations and equal employment opportunities.

And remember that MDA is here to help. If you have unanswered questions, contact a member of your local MDA staff. With the help of the MDA staff and others who understand your illness, this is a journey that you don't have to take alone.

Judy Walsh
Providence, R.I.

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