Myasthenia Gravis Central Texas Support Group

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Home Our Personal Stories This Is My Story - Judy McGowin - Caregiver

This Is My Story - Judy McGowin - Caregiver

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The following are my opinions and my observations, as a mother-in-law, and should not be construed as information from anyone else.

As some of you are aware, my daughter-in-law was diagnosed with Myasthenia Gravis about 14 months ago.  At the time, she had no job, no medical insurance and couldn’t get government help because she and my son own a home and a vehicle.  She had a large tumor in her thymus gland and would surely die if she didn’t have a thymectomy.

In Austin, Texas, the surgery would cost $40,000.  Because she is a native Panamanian, she checked prices in Panama.  We borrowed $16,000 to send her and her son to Panama in June 2007.  She was with her Mom, Dad, sisters, cousins, nieces and nephews, but longed to be in the United States with her family.  After 3 weeks of recuperation, she returned to Cedar Creek, Texas.  Unfortunately, the surgery did not put her MG into remission, but at least now she could swallow, eat and talk.  Her eyelids weren’t droopy any more and she no longer had blurred and double vision.  She rests a lot because the muscles in her arms and legs are constantly weak.  She had just gotten her accounting degree, and now instead of looking for a job, she struggles to keep up with doctor appointments and medications, and tries to keep her spirits up for her family.

Because this is such a rare disease and research has been extremely limited, her medication is  hit-and-miss.  She took Prednisone for 8 months.  In February when her insurance went into effect, she was able to get the $800 per month prescription that the doctors had wanted her to take but she couldn’t afford.  She now takes Mestinon and chemotherapy (in pill form).  She is able to prepare a hot meal for her family almost every day.  Her family planted a small garden for her so she would not have any pesticides on her vegetables.  Every day after the sun goes down, my daughter-in-law will go to her garden, pick vegetables for the next day, and water the garden.

This disease weakens all the muscles in the body.  Patients with MG cannot stay outside in the sun because heat drains more energy from their bodies.  MG patients can’t plan vacations because from hour to hour they don’t know what their energy level will be.  Research for this disease has been very limited because of its rarity and also because it normally isn’t a fatal disease.

Judy McGowin

MG Support Group of Central Texas