Imagine becoming exhausted by a walk to the mailbox.
Such is Linda MacMullen’s life.
MacMullen has myasthenia gravis (MG) – a rare neuromuscular/autoimmune disease that affects an estimated 30,000 Canadians.
“If I have just had my IV treatment, I can walk maybe half a block, and if I haven’t, somedays, I can’t walk to the top of my driveway,” she said. “I never know in the morning when I get up, what kind of day it’s going to be.”
McMullen was diagnosed with MG in 2001, after more than 10 years of showing symptoms.
“It is fair to say for many, they have never heard of myasthenia gravis,” said MacMullen. “At the time of my diagnosis I had never heard of it.”
MG falls under the muscular dystrophy umbrella and there is no cure.
According to the National Institute of Neurological Disorders and Stroke website (www.ninds.nih.gov), MG causes weakness in the skeletal muscles, which are responsible for breathing and moving parts of the body, including the arms and legs.
The hallmark of myasthenia gravis is muscle weakness that worsens after periods of activity and improves after periods of rest. Certain muscles such as those that control eye and eyelid movement, facial expression, chewing, talking, and swallowing are often (but not always) involved in the disorder. The muscles that control breathing and neck and limb movements may also be affected.
“So at the beginning of the day I feel stronger and then by lunch it’s just steady downhill,” she said.
Every day is like that, for MacMullen.
“I have what’s called generalized myasthenia. So that means it affects my eyes, my swallowing, my breathing, the strength in my arms and legs – everything,” she said. “It makes life interesting, put it that way. You never know what’s going to happen next.”
McMullen said that while she does feel she has a good grasp of her condition, one of the most fearful situations for her is when she has to go to the hospital due to a flare-up.
“It’s more of a concern if I have to go to the emergency department, because the medical professionals do not know the warning signs for an impending crisis, and the treatment is different than for other people going into respiratory arrest.”
She said that while she wears a medic-alert bracelet, identifying her as having myasthenia gravis, there are no directions on the bracelet, and the disease is still rare enough that most emergency healthcare professionals are relatively unfamiliar with procedures.
“The bracelet just says ‘myasthenia gravis’ and gives a number to phone, but I always carry paperwork with me that says what to do if I am having real problems breathing,” she said. “But convincing the doctors to read the paper…”
McMullen knows of only three other people in the Comox Valley with MG.
“I have been told that there are more, but it’s a very small [community],” she said.
McMullen is organizing an MG Walk around the Airpark in Courtenay, on July 14, in an effort to raise awareness of, and support for sufferers of the condition. She is hopeful that by organizing such an event, others with MG will come out and create a more localized support group.
“There’s a support group in Parksville, but I can’t get to it – I can’t drive that far and back. So basically, most of my support is online. I have a good friend who is learning everything she can about it, but I’ve been doing this on my own for a long time. It’s not fun. It would be nice to have more people to talk to who are going through the same thing.”
The July 14 walk will take place at 10 a.m., starting from directly behind the Chamber of Commerce office, at 2040 Cliffe Ave. There is no set distance for the walk.
“I have friends that will walk the whole distance, but I can’t walk all the way around, so I’ll be the one in the wheelchair,” said MacMullen.
For more information on the walk, contact MacMullen at l.macmullen@shaw.ca
For more information on myasthenia gravis, visit www.MGCanada.org
