Soldotna woman honored

Posted: Thursday, May 10, 2001

Barbara Johnson is a mother who is heavily involved with her son's activities as well as her own. But Johnson lives with multiple sclerosis, a disease of the central nervous system,

Because of her accomplishments, Johnson has been selected as the 2001 Alaska MS Mother of the Year.

According to officials at the National Multiple Sclerosis Society Alaska Division, Johnson received the most nominations in the state.

Johnson said she is honored by the thoughtfulness of the nominations.

"I feel all the ladies who helped me be a mother, they should definitely stand up and take a bow, because I depend on them a lot," she said of those in her MS self-help group.

Johnson and her 14-year-old son, Mark, moved to Soldotna from Anchorage in 1998 because she said God sent her here.

"I want to be where He wants me to be. I depend on Him," she said. "(Moving) has been a blessing, I love the people of the Kenai Peninsula."

Though she is not able to work, she spends her days with volunteer activities, fund raising for her church and taking care of her son. She is a published writer and is currently working on a book about how God has taken care of her and has helped her with MS.

She also plans on being in the upcoming musical "Experiencing God," to be held in June.

Johnson was born and raised in Chicago and New York. She said she has had MS since she was 14, but it was only diagnosed in 1990. She said the effects of the disease have taken a toll on her life.

"I went many years without knowing what was wrong with me," she said.

She said MS is a neurological disease that baffles doctors. It is often called a designer disease because it is tailored for each individual it touches.

Symptoms are different, but they are countless.

"Even though multiple sclerosis is not fatal, it's the things it does to you, if it attacks different organs, then that could very well be fatal," she said.

Johnson said she has experienced symptoms such as blurred vision, extreme fatigue, vertigo, spasms, tremors and loss of coordination. While in Fairbanks, she experienced vertigo and was in bed for three and a half months.

She said a lot of the frustration of living with MS comes from its unpredictability.

"For the most part, there doesn't seem to be a thing wrong with me. Folks hardly ever see me on really bad days, so they have no idea that I daily fight a relentless disease. I might be confused, I get lost a lot, I'm in pain from spasms, struggling to breathe, to see, or even to feel," she said. "I had to park my car for an entire year because I could not feel the gas or break pedals.

" It can be confusing for people to see you with a cane one day and without it the next, or wearing glasses one day but not the next, or to see you in terrible pain and not know what the problem is. But that is exactly how unpredictable the disease is. And it is different for every individual with MS."

The challenges of the disease never end.

"My illness frustrates my son, as he is discovering that I have many talents and abilities but am not able to put them to use because of the limitations of the disease," she said.

But concentrating on her illness is not what Johnson is about.

"I like to encourage people," she said.

She makes sure area residents keep up to date with current MS research. She organizes the self-help meetings that are held monthly at Central Peninsula General Hospital, and she finds speakers and experts for the meetings.

She also encourages others with MS. Saturday, she will walk approximately five miles in the MS Walk for Dr. Greg Jack of Washington

Johnson learned of Dr. Jack through Jim and Sue Nelson, owners of Papa Murphy's in Soldotna, where her pledge box is kept. Since learning about Jack, a friend of the Nelsons who recently was diagnosed with MS, the two have kept in touch by phone and e-mail daily. She is hoping to get many pledges from area residents.

"If there is no money, no research can be done,"she said.

With a teen-ager, various activities and having multiple sclerosis, Johnson said she is prepared to face any challenge.

"I am always learning to be a mother, every day Mark throws a new curve at me," she said. "We have very full lives."

As well as being named MS Mother of the Year, Odette Pack, a Mrs. Alaska contestant, nominated Johnson as an outstanding single mother, a new program held this year during the Mrs. Alaska pageant.

"I feel honored to go up and be a part of her team," Johnson said.

With all that she is involved in, Johnson said, she is grateful for all the help she receives from people in the area.

"It is amazing how full my life has been since MS, although I have had to slow down. God has been an incredibly good father to me. He has used hundreds of people around the state who have been there for me in various capacities over the years that have enabled me to have a full life, a smile, a hug, a shoulder to cry on and countless prayers.

"I could never say thank you enough, Alaska has been a place of continual blessing," she said.

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