:bookread: Hi, Thanks for stopping by.

In 2003, I was asked to be part of this article for MDA to be featured in their 2003 QUEST Magazine.

I found it and reread it this morning. It was done in 2003. I wanted to share it here in my Blog as I know there are a few here that have Myasthenia Gravis and if I could help them in any way, I wanted to do so. It was a real shock to me to look at the dates of this interview and realize I stroked

not long after the interview. It was something to read my hubby's responses.... a lot to reflect on. Here is the interview.

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QUEST Vol 10 No 3 MAY/JUNE 2003

To Stand Together or Fall Apart

How a Marriage Weathers a Neuromuscular Disease

by Tara Wood

Jan and Wayne Johnson

Photos by Stuart Zolotorow

A marriage is like a building. The structure can be weakened by lack of maintenance, or improved with attention and work.

Add a serious health problem, and the building must weather a heavy storm. If the foundation isnt strong, the underlying imperfections might grow and spread from the force of the storm, ultimately rendering the structure so fragile it falls apart. Or, the partners can use resources like love, support and determination as the cement to hold the structure together, and maybe even to build a better building.

Here are stories of how five men and women served by MDA handled the marital issues and challenges that arose when one partner was found to have a neuromuscular disease after being married.

While each relationship is unique, these spouses have learned lessons that can translate into valuable advice for any couple.

"We Had to Reinvent Our Life"

For Jan Johnson, receiving a diagnosis of myasthenia gravis in 1998 marked a major turning point in a frustrating, multiyear odyssey of perplexing and debilitating health problems, medical tests, treatments and misdiagnoses.

But while the definitive diagnosis answered many questions about symptoms shed experienced since the 1970s, it wasnt the magic bullet shed been praying for.

The bubbly 52-year-old from Churchton, Md., hasnt been able to bounce back fully to an active life filled with volunteering, a career and a marriage to husband Wayne.

Johnson, Marylands MDA Personal Achievement Award recipient for 2002, said the ultimate diagnosis came about a year and a half after "the Lord put a wonderful man in my life" and she remarried in 1996.

It was the second marriage for both: Wayne had been divorced for 16 years, and Jans first husband had died suddenly in 1992. But during a time that should have been filled with newlywed bliss, Johnson was plagued by extreme fatigue, droopy eyelids and slurred speech, and was so weak at one point she couldnt even brush her hair.

"My life as I knew it wasnt there," she said, and her frustrations were compounded by guilt that she was dragging Wayne through difficulties he didnt deserve.

"This was supposed to be a happy time for him," she said. "When I was so sick I would tell him, I dont want you to feel trapped. If you want out, please go. I didnt want him to have a miserable life."

Wayne chose instead to remember his marriage vows. "When you get married, it says for better or for worse. You just have to deal with it, and it gets hard at times," he said.

Johnson has dramatically cut back on her volunteer work for children and families affected by cancer, including hospital visits and running a family camp retreat. She was also forced to discontinue performing as Sunrise the Clown, give up a job that she loved doing security for Raytheon Missile Systems, and take disability income.

"The only thing that really helps me is rest, and I cant be around people who are sick" because her immune system is compromised by the drugs she takes for MG, she said. Johnson also underwent a thymectomy to treat her disease.

Wayne, a central office technician for Verizon, sometimes has to do more than an equal share of housework when Jan isnt feeling well. He also took a cut in pay when he transferred to a Verizon office closer to their home.

"Its caused a lot of stress in our marriage because my husband has to be the chief bottle washer and cook and everything," she said. Wayne says Jan "does what she can" when she's able to.

An ongoing challenge is not being able to plan things, such as trips or outings, because of the unpredictability of Jans disease.

"We'll plan to do something, so he'll take off of work. Then that morning comes and I cant even get out of bed," she said.

LESSONS LEARNED

The eternally positive Johnson strives to focus on what she still can do. When her health allows, her volunteer efforts now include extensive activity with MDA (she was designated Maryland's 2002 MDA Adult Goodwill Ambassador) and creating awareness about myasthenia gravis. She hosts educational sessions about the disease for paramedics and other health care workers.

The couple relies on their love and open communication to get through times in which they sometimes verbally take their frustrations out on each other, Wayne said.

"We get upset at each other about things, but we talk it out and get it straightened out," he said.

Jan still grapples with not "overdoing it" when she feels well and, as she puts it, with having the disease, not letting the disease have her. She also gathers strength from her religious faith, benefits from monthly counseling sessions, and spending time with her two stepdaughters and four grandsons.

Having myasthenia gravis "has changed my life greatly, but we just have to reinvent the life," she said.

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Four months after this was written, I ended up with my Brain Stem Stroke. Who would ever have thought it.... not Wayne and I. With life, we just never know....what the next second, minute, hour, will bring do we?

"It doesn't matter where the train is going, What matters is deciding to get on."

This statement is one I think of almost every morning. I want to get on the "train" .... I want to join the "human race" for this day.

Not sure what stops the train will make today, but, I am willing to get on and find out. I hope we go straight through the town of Sadness and confusion, Negativity(let it be replaced by Joy, Happiness and lots of Positive Energy) HOPE, FAITH, LOVE, FRIENDSHIP. God is my conductor and he likes to take the Train to nice journeys.

Believe In Miracles And SOAR