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CK Faces: Fight with MS doesnt slow Buell down
Multiple sclerosis is an autoimmune disease in which the body attacks its own protective tissue of the central nervous system. Symptoms vary in severity and it may affect a persons vision, sense of balance, induce temporary or permanent paralysis, tremors and muscle tightness.
One prevailing characteristic of MS is fatigue.
But dont tell Joyce Buell that.
One thing about her, the rest of us with MS tend to pick and choose what we want to do, shes the one who gets behind the scenes and makes everything happen, said Illahee resident Pam Campbell.
Campbell, diagnosed with MS in 1992, is involved with both the Bremerton MS Self-Help Group and the Kitsap MS Walk. Her friend of five years, Buell, has taken on leadership roles in both.
Diagnosed with MS in 1999, Buells symptoms were mainly dimming vision and fatigue. Daily injections of Copaxone have limited her MS to what she calls mini-relapses and she remains active, granted she plans her days and builds nap time into her busy schedule.
When she moved to Bremerton four-and-a-half years ago, Buell began attending the self-help group that meets at the Central Kitsap Presbyterian Church on Nels Nelson Road. Between 14 to 20 people affected by MS, usually in wheelchairs, gather at the monthly meetings.
Shes able to get around more than the rest of us so shed be there earlier and get the coffee started, said Sharon Barley, the groups leader, about Buells initial role.
East Bremerton resident Barley, 62, was diagnosed with MS when she was 24. In the fall she succumbed to a non-MS related illness. Thats when, unsolicited, Buell stepped in.
She took over while Ive been sick since last November and before that even, Barley said. Shes been doing a really good job too. I might just sit back and let her finish the year.
While Barley was sick for several months, Buell booked the speakers and ran the meetings, while also busying herself as one of 12 planning committee members for the Kitsap MS Walk.
Considering she lives with MS and deals with MS and has taken this on, she doesnt want to be named the leader, but she is the backbone this year, said MS walk committee member Michelle Cherry.
A stay-at-home Silverdale mom diagnosed with MS 10 years ago, Cherry attended only one of the self-help group meetings.
But, like Campbell, Cherry limits her involvement to spend time with her daughter, 8-year-old Jessica, whose powerful fund-raising efforts also are the reason for Cherrys membership in this years MS walk planning committee.
Since meeting Buell last October, Cherry says she is impressed with her friends dedication to both the walk and the self-help group.
Thats where Joyce is great, Cherry said. Shes trying to help people with MS on every level.
Refusing to take the credit, Buell insists she draws inspiration from the women in the MS self-help group.
Im not depressed at all by the women in the power chairs and scooters, Buell said. Theyve not just sat back and said Poor me and stopped living.
Recognizing Buells work with the self-help group and the Kitsap MS Walk, both sponsored by the Greater Washington Chapter, the Seattle office of the National MS Society named her the honoree for this years walk at Klahowya Secondary School.
(A honoree is someone) who has MS and who provides hope and inspiration for other people with MS and Joyce was a clear choice for that, said Kristin Hesse, team MS manager with the Greater Washington Chapter.
The dollars raised at the walk help fund self-help groups like the Bremerton one, research into the causes and treatment of MS.
The cause is a mystery, the cure is unknown, Campbell said. Thats what they keep telling us.
Scientists believe there might be a genetic link to the disease, but thats only half of the story, Buell said.
When Buell was diagnosed, she worked as a medical assistant in a hectic urgent care clinic in Marysville. She noticed she kept feeling inexplicably tired and had no strength to walk into the clinics basement to bring up supplies.
I just kept thinking I was really out of shape, Buell said.
Then one morning in June 1999 a brown Whidbey Island-shaped splotch appeared in her vision. Tests revealed the cause MS.
Buells vision recovered significantly, but there is lasting damage in the optic nerves of her left eye.
Last year, at the end of the Kitsap MS Walk day, Buell was having trouble with her feet. They moved about 2 inches at a time, on account of the days excitement and fatigue, she recalled.
Thats why shes pacing herself today at Klahowya.
A lot of us have short term memory problems, difficulty retrieving information, Buell said earlier this week.
Thinking ahead to the MS walk, she added, I really have to focus on what Im saying, what Im doing because that level of stress really brings out my symptoms.