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Group comes together for MS support
Sequim and Port Angeles' MS Support Group members hope to bring those with MS together and create a helpful and proactive community.
Members said, due to the North Olympic Peninsula's remote area, MS care and support are low so the group is even more important.
Group co-leader Joann Moore said Port Townsend has an active support group but there is little attention in Sequim, Port Angeles and Forks to MS.
"We're trying to create more awareness," Moore said.
The group guessed there are about 200 people with MS on the North Olympic Peninsula.
What is MS?
MS is an autoimmune disease that mostly affects the central nervous system and destroys myelin that protects the nervous system, leaving scar tissue called sclerosis.
When myelin and nerve fibers are gone or damaged, nerve electrical impulses are disrupted.
Group members call MS a "designer disease" because it is different with everyone.
Due to its various symptoms, those with MS may see their primary care physician along with neurologists, physical therapists, speech pathologists and/or optometrists.
Possible indicators of MS
- Slurred speech
- Depression/unstable mood
- Sudden, fluctuating vision
- Fluctuating or consistent pain
Most attendees at the February meeting said they weren't diagnosed with MS for years because of the disease's various symptoms.
Some were diagnosed with other ailments and found the prescribed medications were ineffective before their MS diagnosis.
"It's an unbelievable variety in age and severity for who gets MS. It's not concrete," said Ray Stahl, a caregiver.
Due to advancing technology, MS has become easier to diagnose, Moore said.
The monthly MS Support Group offers an opportunity for those from Port Angeles and Sequim to talk about the latest research and encourage one another. Attending the February meeting were, from left, Kathy Hahn, Port Angeles; Claire Steiman, Port Angeles; Ray Stahl, caregiver in Port Angeles; Joy Barnes, Port Angeles; Melissa Vemi, Sequim, group co-leader; Joann Moore, Sequim, support group co-leader; and Phyllis Atkinson, Sequim. Sequim Gazette photo by Matthew Nash
Care on the peninsula
The level of local care for MS patients varies depending on whom you talk to in the group. Some said if there were an immediate need, it wouldn't be met right away because their primary care providers don't know much about MS.
The nearest neurologist is in Bremerton and those with MS must travel there or to Seattle to see a specialist.
A few local doctors will partner with neurologists to save patients' time and money, a few group members said.
Gregg Robinson, program manager for the National Multiple Sclerosis Society, said the MS Society leads an annual summit to educate doctors and medical professionals and that many doctors attend, but it's not mandatory.
Aside from prescribed medications, locals find MS treatments and comfort through various methods, such as:
- E-mail and Internet groups
- Community meetings
- MS Society
Moore said she discovered yoga to be a great resource for her MS and that the method adjusts to the person no matter the level or ability.
Maintaining a positive attitude is key to health, says Claire Steiman.
"Find something fun and go do it even when you don't want to," she said.
The support group itself is an outlet, said Joy Barnes of Port Angeles.
"This my way to network and meet more people," she said.
"I'm happy this group is so positive," said Melissa Vemi, co-leader of the group.
"Attitude is 95 percent of the battle with this disease."
The MS Support Group meets at 11 a.m. on the third Friday each month alternating between Sequim and Port Angeles Olympic Medical Centers. The next meeting is Friday, March 19, at Sequim Olympic Medical Plaza, 777 N. Fifth Ave.
Moore said she does her best to bring in relevant speakers such as specialists with a background in MS.
Members bring recent research for discussion, too.
"It's not the same regurgitated information each month," Moore said.
Meetings average about six out of 15 members.
Resources through the MS Society are available by calling 800-344-4867 or on the Web at www.mswashington.org.
Funds are available for counseling, fitness and emergency utility assistance to those with MS, and Robinson recommends people call for availability.
March 8-12 is MS Awareness Week and the annual Walk MS will be Saturday, April 10, in Bremerton and in several Seattle locations. It is the largest fundraiser for the local MS group in western Washington.
For more information on the local MS Support Group, call Joann Moore at 683-2461.
Reach Matthew Nash at email@example.com