PeggyAnn McConnochie has multiple sclerosis - the fifth type. Which according to her "is really, really cool."
It's a surprising statement. What could be "cool" about having MS? Likely not a whole lot.
But McConnochie, a real estate broker who has lived with the neurological disease since being diagnosed in 1982, insists "it could be worse."
And she's right. She's one of the lucky ones whose disease progression stopped.
"I live with my MS very carefully, I do things specifically to make sure my quality of life is as good as possible," she said.
Now, with an outlook on life that is wholeheartedly positive, McConnochie strives to given back to those in need and share with others the wisdom, peace and strength she's gained through years of living with MS.
She's shared her story with referred patients, friends of friends and complete strangers with whom she shares nothing more than the fact they both have the disease. McConnochie said she's met with about 50 people from Juneau and beyond and is hopeful she in some way helped them all. She also began organizing the local MS Walk more than a decade ago with her husband of 30 years, John. The event was brought back on Saturday by Juneau's Rotaract club.
But McConnochie wasn't always so open about MS.
In the beginning
"I was a big racquetball player. I loved racquetball. And, I discovered that my right hand had gone numb. I thought, 'Well, maybe I'm just playing too much racquetball,'" McConnochie said.
But after a series of tests and misdiagnosis, doctors in Juneau had found nothing conclusive.
McConnochie sought answers; all feeling was gone in both hands up to her shoulders. Her legs felt the same. As she described it, her limbs were perpetually "asleep."
A neurological specialist in Spokane, Wash., told McConnochie it was probably MS.
In the early 1980s, McConnochie said the technology was primitive, not yet tuned in to pin-pointing the cause of multiple sclerosis symptoms. It wasn't until years later, after an MRI, that doctors could distinctly see the demyelination, the exposed and damaged nerves, the root of her numbness.
"I wanted to know how I got it, how I could get rid of it, what could I do in the meantime to make it better. ...I was just mad," McConnochie said.
She immersed herself in the topic of MS. But, she said, it was before the Internet, so the literature was buried, and the ones she found were cluttered with medical lingo.
"I was trying to read it, trying to break it down and trying to figure out reasons. It was very, very difficult," she said.
Then one day she got a call. On the other end was a woman who also had MS and an offer to McConnochie to talk about her feelings, to ask questions and to be understood.
"(The conversation) calmed me down," she said. "It also gave me the reality of: There's no cure (but) there's a lot of ways to live with it, ... and that was incredibly important."
In the first year after being diagnosed, McConnochie wanted her disease to stay a secret.
"I couldn't tell people I had MS. I could not even say those two letters together," she said.
But four years later reality had set in. Her nerves had calmed and the desire to keep her disease hidden faded. She told her doctor to spread the word. If anyone in the community is diagnosed, give them her number.
Then the calls came.
"All the sudden I started getting phone calls from people who said, 'I've been told to contact you, I've just been diagnosed with MS,'" she said.
There's an openness that comes when people have a commonality between them, she said. Conversations between McConnochie and other patients delved into the similarities and differences each has experienced from the disease.
"I enjoy giving people the ability to talk it out. To get it off their chest and let them know, 'you're going to be okay,'" she said. "I don't want anybody to ever have to suffer from (MS), and I'd like the people who suffer from it now to be able to have a life. That's what you hope for."
Glass half full
Today McConnochie smiles when she talks about her disease.
"Ask me anything," she said.
Yes, she has to take extra precautions when near hot things like the stove and fireplace. No, she cannot ride a bike. She's the first one to put on mittens, and the last to take them off. She gets tired in the afternoon, but feels lucky she doesn't suffer from the fatigue most MS patients feel.
And she's hopeful. She's impressed with the way MS groups do research. Funding is available for any group that finds a link to how MS is caused, treated or functions. New drugs are being introduced that successfully slow or stop the progress of the disease and to help manage symptoms.
"We're really close to finding something that's going to find out what in the heck this is from," she said.
Contact Abby Lowell at 523-2271 or firstname.lastname@example.org