OPMD: Not Glad, But Very Well Prepared

Carol Forde's story

Article Highlights:
  • Part of the 2009 In Focus report on oculopharyngeal muscular dystrophy (OPMD), this article tells the story of Carol Forde, a middle-aged woman with this disorder.
  • The article discusses Forde's family history, diagnosis of OPMD, eyelid drooping (ptosis), blepharoplasty (procedure for ptosis), Muller's muscle conjunctival resection (procedure for ptosis) and walking difficulty.
by Margaret Wahl on October 1, 2009 - 3:15pm

QUEST Vol. 16, No. 4

“We think my grandmother was French Canadian, but she didn’t really talk about her history a lot,” says Carol Forde. “I don’t think the doctor knew what she died of. He said it was pneumonia, but she might have aspirated [inhaled food or liquids into the lungs]. It was a different time. We just accepted it.” 

But when her mother, Marjorie Sanderson, began experiencing some of the same symptoms many years later, the family was more concerned with diagnosis and treatment. 

“My mother, before she retired, told me that people at work used to call her “sleepy” or “droopy” because she was developing ptosis [eyelid weakness].  

“Then one day my mother was at a Penn State football game, and she noticed it was really hard for her to climb the steps into the bleachers.” Sanderson was in her late 50s and living on the East Coast at the time. 

“The symptoms became more pronounced very, very slowly, and stairs got pretty hard for her,” Forde remembers. “But she was very active and very slim, and she did OK.” Eventually, a neurologist in New York identified the problem as OPMD

“We had never seen my grandmother get really debilitated,” Forde says, “and we didn’t have reason to believe that my mother was going to have a really hard time. But it got to the point where the stairs were more difficult for her. They had to buy one of those stair glides to go down into their basement, because that’s where the laundry was. She was probably in her mid- to late 60s.” 

Some time after Forde and her new husband moved to Wisconsin in 1997, her parents followed. They were in their 70s, and Sanderson’s symptoms were getting worse. Forde and her mother visited the Mayo Clinic in Rochester, Minn., where Sanderson eventually underwent a frontalis sling procedure on her eyelids (for more on eye surgery procedures, see “Nips, Tucks and Lifts”). 

Then, in September 2007, Sanderson suddenly died, at age 80. “This is hard for me,” Forde says, barely able to control her emotions. “She was home alone, and she choked on her lunch.” 

Meanwhile, Forde’s own OPMD symptoms were progressing. At age 49, she looked in the mirror one day and saw her eyelids were drooping. It wasn’t long before her vision was affected, especially while driving at night. When she pulled up to a stoplight, the light would refract through her eyelashes. “It was like a light show,” she says. “I thought, ‘I really want to do something proactive about my eyelids.’” 

In May 2007, Forde underwent a blepharoplasty on each eye with the same surgeon who had treated her mother. “It provided some lift in my eyelids,” she says. “But, to be honest, I thought it would be more dramatic. I found I was still looking through my eyelashes.” 

In July 2009, she underwent a Muller’s muscle conjunctival resection.

“My eyelid function is absolutetly perfect,” Forde said, less than a month later. “I feel fine.”

So far, swallowing hasn’t posed a major obstacle for Forde, but she’s not complacent about it. “I do get stuff that sticks,” she says. “Maybe over the last four or five years, since I’ve started to notice it, there have been a couple of scary incidents.”

Recently, she’s begun having trouble walking up stairs.  

“I’m not glad I have muscular dystrophy by any stretch of the imagination,” Forde says. “But with my mother having been very, very proactive about being diagnosed, and following the course of her progression, I feel like it’s not going to be wonderful, but I feel very well prepared.”

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