I have known Nancy since I moved to Illinois back in the day (’92 I think). She was in the church we were attending and I remember vaguely her walking with a limp and was always very talkative and nice. II learned later she had MS. She is the only person I know that has it and I also remember seeing her a while ago and she was in a wheelchair because of the disease. I got a chance to reconnect with her through a face-to-face visit to ask about her journey with MS. Here is how it went-
She was diagnosed in 1995 but her first symptoms occurred in 1975. She had a major nervous attack of trembling and shaking all over while having a discussion with her husband about life. They went to the ER and the doctors gave her a sedative, told her to relax and stop eating spicy foods. She had other odd symptoms throughout her life-back pain, heaviness in her legs, numbness in hands. She remembers a time when she was walking with co-workers in St. Louis on a hot day and she started stumbling. Her legs would not cooperate and when she got to the restaurant she could not pick up a glass. After a big she had cooled off and the symptoms subsided. She went to chiropractors and the third one heard her story and thought it might be MS. He encouraged her to see a neurologist and tell him the story she had told and see what he said. Sure enough, that neurologist ordered and MRI and by the results were conclusive. She had lesions all over her brain and up and down her spinal cord. An answer but certainly not a happy one.
Today she has weakness and is in a wheelchair. She has weakness in her hands so much so that she cannot hold a pen to write. She had been in the hospital for steroid treatments a few months before and her bowels were better but her legs were worse. The steroid treatment lasted five days and she stayed in the hospital during that time. She was next to a person who told her that her doctor (the same one I used to go to) was so great because he treated epilepsy patients regardless of how much they could afford. I thought-nice but does NOT make up for the crap way I was treated.
Medications-she takes medication for fatigue, one for spasms (makes the muscle weakness worse), one ABC drug and something for her bladder problem. She also takes B complex supplement at 600 mg/day.
She had tried bee sting therapy which seemed to be beneficial but her husband could not handle stinging her.
Her important lesson through this:
1. Learn to slow down-this disease does not give you a choice to do so either.
2. Appreciate people. Others are important and take the time to listen to them. She sells Avon and most of her clients are elderly women and she has the time to really listen and they enjoy her.
Her silver lining: Knowing without a doubt that God is in control, she can depend on Him and He supplies all of her needs.
Her regret: that she did not start on the ABC drugs sooner. Her understanding is they slow the progression of the disease.
Her greatest source of strength-God and the people He has sent to help her.
She recommended a book called You Gotta Keep Dancin’ by Tin Hansel. I will have to check that out.
All in the all the interaction was helpful I suppose. She remains talkative-her mind is still sharp but her lower body in particular is “shot” (as she puts it). It was nice to hear from an actual person, not a book or a “I know someone who has MS” story.
However, her story will not be my story. I am determined to use this disease (and my body) to help people understand the role that diet and stress plays in their lives-regardless if they have MS or not. I want to run myself into the grave, not be rolled in by a wheelchair. I want to inspire others to their greatness while I reach for my own. Every day I will dance…