Living with multiple sclerosis is not easy, not for the patient or family members.
But cope, they do — to enjoy friends, shopping, working and church, things most of us take for granted. and because sometimes their disease is not visibly apparent, they cope by ignoring the ridicule from fellow motorists who wonder why they use handicap parking.
Sue Hartig knows.
Every morning when she wakes up, the local attorney wonders if she’ll be able to walk once she climbs out of bed.
“It does take a toll on my dear husband (Gerald Summers) and me,” Hartig said. “He is an angel who cooks, cleans, runs errands and likes to spend time with me, in spite of the unknown twists and turns MS takes.”
Before the Tri-State Multiple Sclerosis Association was established in 2001, there was no place locally where a multiple sclerosis patient could go for help, said Tri-State MS Association nurse educator Susan Reynolds.
“We have about 1,400 people on our mailing list, and we feel like we know each of our MS clients personally,” Reynolds said. “The office has an open door for anyone who wants to come and ask questions or just talk.”
The association, established by a group of local volunteers, will host “An Evening of Excellence” today to honor Gina Moore and multiple sclerosis patient Becky Unfried, both 2010 Spirit Award recipients.
The evening will be held at the Casino Aztar Conference Center. Dinner will begin at 6:30 p.m., with an award video presentation at 8.
The toll multiple sclerosis takes also can be felt professionally and emotionally.
“Attorneys are not expected to take sick days every time they get a respiratory infection or stay home because there is a heat advisory or streets and sidewalks are covered with ice,” she said.
Sometimes, the “symptoms do not show and some people wonder if the symptoms are real,” she said.
“I have listened to negative comments when people do not think I should park in a handicap parking space when it is overly hot or icy because I have no visible disability.
“I have to consciously remind myself how blessed I am to still be able to work full-time as a department head, enjoy my friends and church community and travel 18 years after diagnosis,” said Hartig.
When Pamela Jutzi was diagnosed with multiple sclerosis in 2005, she did not know anything about the disease.
“The Tri-State MS Association taught me how to find resources for information, giving me hope in dealing with MS,” Jutzi said.
Operating independently of the national association, the Tri-State association has support groups in Evansville, Princeton, tell City and Washington in Indiana; in Henderson and Owensboro in Kentucky; and in Carmi and Fairfield in Illinois.
Multiple sclerosis is an autoimmune disease.
“I compare it to the old lamp with tape on the frayed cord,” Hartig said. “Sometimes the lamp works, and sometimes it does not.”
She was diagnosed with the disease in 1992 at age 38 after an attack of optic neuritis left her without vision in one eye. her vision slowly returned over six months.
Diagnosis usually comes between the ages of 20 and 50, and the disease usually affects women.
“In the Tri-State area there seems to be a high number of individuals living with MS,” said Debbie Hebbeler, executive director of the Tri-State MS Association.
“Why, we don’t know, since we do not know what causes MS. We have some of the pieces of the puzzle of the cause; research has come a long way. It is easier to diagnose now using MRIs. Years ago, it was diagnosed by putting you into a tub of hot water and seeing if you could get out of the tub and still walk.”
Tom Lally, a 1990 Castle High School graduate, watched his mother’s progression with the disease.
“At first, my mom, Janey, was getting forgetful,” Lally said. “It was very frightening when she couldn’t even find her way to Eastland Mall, a trip she had taken many, many times.”
Next was losing her balance on occasion, he said.
“She would go into small remissions, then the symptoms would flare up again,” Lally said. “Right now, my mom has a daily helper to take her places and help with her everyday chores.
“She has a support group with her church.”
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