September 1, 2017 at 4:14 p.m.
'No one should do this alone': Locals start MS group
'No one should do this alone': Locals start MS group
By By Abbey McEnroe-
More than 2.3 million people are currently affected by MS worldwide with more than 11,000 of those affected living in Wisconsin, one of the highest prevalence rates in the country, according to the National MS Society. In Oneida and Vilas counties alone there are over 130 people living with MS.
With these statistics in mind, six people who have either been diagnosed with MS, know someone who has MS, or are simply curious about the disease set out to create a welcoming, informative group for those who are living with MS.
"Everybody is welcome, whether you have MS, whether you don't have MS, if you know somebody that does or if you're interested about it," founding member Terry Stake assured. "There are no dues and there are no requirements to do anything."
The Northern MS Association began when Stake was being treated by group president and local physical therapist assistant Jeanne Sykora, who also has MS. They began talking about creating a group after realizing there is no MS support group in the Northwoods.
From that initial conversation grew a group of six. Four of the members have been diagnosed with MS while two are supportive spouses.
Three of the members with MS were present at the interview described the varying, complex symptoms.
MS is a personal disease with symptoms and types of MS ranging wildly and evolving over a diagnosis period.
Sykora was diagnosed with MS 30 years ago. She suffered from two detrimental exacerbations when she was first diagnosed that caused total paralysis for a time.
"I've had MS for like 30 years and I had two really bad exacerbations in the beginning and I was totally paralyzed and I haven't had any since 30 years ago but I have got some spasticity so it's like stiffness," Sykora explained.
Stake was diagnosed with MS three years ago but has been able to trace his symptoms back 15 years.
"I have what's called secondary progressive so I get worse," Stake expressed. "I don't have exacerbations so much, I just slowly am getting worse ... Not real rapidly but enough that I can notice it."
Founding member Shannon Trapp was diagnosed with MS three years ago.
"I was diagnosed almost three years now," Trapp stated. "Lots of brain fog, of course, spasticity too, I have trouble knowing where I am in time and space, my legs don't love me very much, neither do my hands. It seems like it attacks me more in the spine, which causes more of those kinds of issues."
All members agreed that an initial diagnosis is daunting and by creating this group they hope to offer people affected by MS a place to turn.
"We want to be there for someone to talk to," Sykora expressed. "Newly diagnosed people, their head is in a spin, they don't know where to turn and we want to be there for them."
Stake described their ideal group as one with a positive influence where people can be informed and talk about what they are able to do.
"We want to make this a positive group, we don't want people to come and then everybody there is 'oh woe is me, I've had MS and I can't do this,' we don't want that," Stake said. "We all, most of us or all of us, we've all had MS or have MS so we want to talk about what we're doing positively. We all know what we can't do, that's not a problem. ... This is trying to pick people up, get more people that have MS from this area and just be positive. I mean we can all laugh and have a good time. Just because we have MS doesn't mean we've got a foot in the grave, you know."
Trapp acknowledged that although the group is positive it is a support system for those going through the grieving process.
"When you're first diagnosed you have to go through all the grieving steps because you know your life is going to change but you have no idea how because there's no way to predict how fast it's going to go, what the next thing is going to be, how you're going to respond to medication, if you even are, and it's very depressing," Trapp acknowledged. "We want to make sure people have the support that they need for going through those stages and to know it's normal to feel all that."
Along with emotional support the group hopes to eventually provide financial support to those in need.
"Eventually we want to be able to raise funds for people who can't pay for their medications, because I know mine is over $6,000 just for a month, just for one of the medications," Trapp stated.
"We just want to be able to help people where we can," Trapp concluded.
The Northern MS Association is currently seeking nonprofit status and has a GoFundMe page to assist in startup costs, 501c filing and fees as well as community outreach.
Donate at gofundme.com/establishing-non-profit-for-ms. Join the Facebook group at Northern Multiple Sclerosis Association. Contact the group by emailing [email protected] or contact member Char Zindel at 715-617-2824 for more information.
The Northern MS Association meets the second Tuesday of every month at 5:30 p.m. at Hiawatha Mobile Home Estates, 115 Hiawatha Trail, Woodruff, WI.
Abbey McEnroe may be reached via email at amcenroe@ lakelandtimes.com.
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