NeuroNews

My Life With Multiple Sclerosis

After my first exacerbation at age 29, but unaware of the M.S.

I had my second child at age 30

I became a preschool director, a position I held for nearly 8 years that necessitated a 45-55 hour work week

I took numerous family trips to Branson, MO (where I had my first horseback ride); Galveston, TX; Littleton, CO (where I white water rafted 3 times in the southern part of the state); Minneapolis, MN; Oklahoma City, OK; and many other locations with family attractions such as white water rafting (3x), and multiple amusement parks (where we rode every scary ride possible!)

Our family had season passes for many years to Worlds of Fun

I took frequent walks, often 2 miles or more

I was stewardship chairman for our church

I was part of a 100% club for successful directorship of my preschool academy resulting in trips to NY, CA, FL, HI (2x), England, France and Holland.

I became a member of our church council and was on the personnel committee as well

13 years after my first exacerbation, I was promoted to a company directorship, leading the customer service department for the second largest educational and proprietary childcare in the nation

I went parasailing, the same month as my initial diagnosis

After diagnosis (2 months prior to my 46th birthday):

2 years after diagnosis, I initiated the first licensed daycare for jr high age children during the summer

I became an M.S. advocate with Shared Solutions, bringing hope to others with this disease

We took many family vacations including to Redondo Beach, CA and Tijuana, Mexico

Five years after diagnosis, I was the first recipient from the corporate office to win the customer loyalty award and another trip to HI

I attended a company leadership in the mountains of CO, engaging in physical challenges that served as exercises to promote values and teamwork

The following year, I attended another leadership workshop to the same area in CO, but required an overnight camping trip in February

I wrote the company's Good Customer Service Guide
I developed a program for my company of utilizing parent boards and traveled extensively throughout the U.S. presenting it to parents and the field.  At one point, there were 6 straight weeks of travel that managed to be different time zones from each previous trip

We bought a kayak to use on a nearby lake

I drove my son's Jeep with extra big tires

Six years after diagnosis, my husband and I celebrated our 30th anniversary 3 months early by going to Cancun where we snorkeled, shopped, and enjoyed our tourist

Eight years after diagnosis, I accepted a position that did not require commuting in a government call center and was promoted to a supervisor position within 3 months.

Nine years after diagnosis, I became an Operations Rep, supervising the supervisors and implementing many new programs that I created or helped to create

I wrote a children's book yet to be published, but nevertheless accomplished

Ten years after diagnosis, our entire family went to HI where we visited volcanoes, dolphins in the ocean, and enjoyed the incredible ambiance of the islands

Later I retired due to secondary progressive M.S. and to spend time with my husband who was fighting cancer.  I booked all of our numerous travels to Houston, Chicago and Texas.  I became his caregiver on many occasions.

Eleven years after diagnosis:  I continue to fly (even alone to CA)   My eldest son and I spent time between the holidays in Orlando, FL, visiting Kennedy Space Center, Universal Studios, and riding on a swamp boat to view "gators."    I have an upcoming advocate reunion in July to San Diego, and my sons and I are taking our first cruise in August where we will visit the Grand Cayman Island and Playa del Carmen, Mexico.

I am on the Vision Team at our church that creates small groups within the congregation.  I am the coordinator for one of the groups which I created, and a member of another which I developed.

SUMMARY

You can maintain who you are.  I now use a mobility scooter to substitute for walking of any distance but I do have a lift in my car to accommodate my scooter.  This enables me to go many places by myself.  I do navigate the stairs in my two story home, and I fully intend to do what I want and can do for as long as possible.

 - This story was submitted by a patient at MidAmerica Neuroscience Institute who understands that a diagnosis of MS is a defining moment in life but that MS does not have to define your life.  The clinicians and staff at our Multiple Sclerosis Center were so impressed with the spirit of this woman that we asked to share her MS story with our readers.