Beating the MS Clock
I’m 68 years old. I’ve had multiple sclerosis since I was 32. I’m not sure where I expected this disease would take me when I was diagnosed 36 years ago, but I hoped that MS wouldn’t steal too much of my life from me. I certainly never thought of the possibility that I might live to a really old age as an MS patient.
But, here’s a story about someone who has done just that. Louise Miller has MS and, a couple weeks ago, she celebrated her 95th birthday! Mark Kennedy wrote about her in a column in the Chattanooga Times Free Press:
Multiple sclerosis is an insidious companion.
Sometimes, it ducks into the shadows. Other times, it jumps out with menace. Always, it tests a person’s character.
Chattanooga’s Louise Miller, who turned 95 years old on Nov. 12, was featured in a Chattanooga News-Free Press article way back in 1979 after being named the area’s “MS Mother of the Year.” If you are counting, that was 37 years ago.
Miller still has a framed copy of the newspaper article on her wall. It was a big, six-column story. She was pictured with her now-deceased husband, Austin, who owned Scenic Land Printing and Sales Co. She was lauded in print as a mother of four and energetic volunteer for the MS Society, an avid gardener and member of the Red Bank Presbyterian Church.
The subtext of that article was the belief at the time that MS sufferers were on the clock, that their lives would almost certainly be cut short by the disease.
Multiple sclerosis is a condition of the central nervous system. Women are two to three times more likely than men to develop MS, which affects about 2.3 million people worldwide. It can cause fatigue, vision problems, numbness and mood changes, among other symptoms.
Today, Louise Miller lives at the Manorhouse Assisted Living and Memory Care facility on Mountain Creek Road under the care of a watchful staff. Her daughter, Susan English, lives in Texas and monitors her mother on an internet-connected camera.
At the time she was diagnosed decades ago, Miller was a vibrant middle-ager. “At the time, it took us by surprise,” remembers her daughter. “We thought it was a death knell. Back then, there were no drugs and no cure.” Until her early 80s, Miller battled MS by resisting a wheelchair. She used canes to walk until her balance became so unsteady that she could no longer get around safely.
Yet, here she is at 95, an inspiration for middle-age people today facing MS. With advancements in medicines and good medical care “people with MS may live an average of about seven years less than the general population,” according to the national MS Society.
Like a lot of older folks, Miller’s long-term memory seems more fluent than her short-term memory. “I’ve come a long way from the tobacco fields,” she announced on the day I visited. “I hoed tobacco and cotton and everything else. It was a good life. I worked in the sunshine.”
About three years ago, Miller’s condition became grave and doctors feared the worst. In fact, they began to use the words that are often a prelude to death. “They said, ‘Your mother has lived a good, long life,'” remembers her daughter. At that point, English abruptly turned to her mom and asked: “Mom, do you want to live to be 100?” “Well, of course I do,” she replied. With that, English invited the assembled doctors to get onboard with her mother’s wishes, or the family would find a new team of physicians.
To see Miller motor around Manorhouse these days in her electric wheelchair and interact with friends and staff is to know the family made the right decision. “She is very strong-willed,” English says. “She doesn’t think she is 95. She wonders why she is here with all these ‘old people.'”
MS, the great time thief, has been held at bay.
Of such blessings is Thanksgiving made.
Contact Mark Kennedy at [email protected] or 423-757-6645.
[You’re invited to follow my personal blog at www.themswire.com]
Editor’s Note: This column was reprinted with written permission of the columnist.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
Elise
Wow, such inspiration that I will try to keep at the back of my mind and in my heart. I have a friend of 93 and she praises me!
Not that age really matters, but the attitude and spirit, right?
Ed Tobias
Hi Elise,
You bet, you're as old as you think you are. Unfortunately for many people who I work with, and my wife, I still think I'm 20! When I ran across this article I had to pass it along.
Ed
Olive Bird
My mother was 96 when she died....she was diagnoised late in life, and was in a wheelchair from 70, IF they had invented Wheelie Walkers back then, she may have not needed a wheelchair. The specialist told her all those years ago "you will die with it..not of it " "
Ed Tobias
Good morning Olive,
It sounds as if your mom had a specialist who knew what he, or she, was talking about. I like to say that even a pair of deuces can be a winning a hand if you know how to play it and have a little luck.
Thanks for taking the time to comment.
Ed
Linda Thorn
I had a very wise doctor tell me right after my dx when I was in my 40's, to be very careful not to let fear of the disease cripple me, long before the disease ever would have. I was confused by what he meant, but now in my mid 60's I have learned exactly what his warning meant. I have fallen, but I got back up and walked on. I have lost use of most of my limbs and vision at one time or another. I waited it out, took the steroids, stayed calm and positive, and each time I was able to eventually get up and walk on. I have heard so many MSers say "oh I could still walk, but I got afraid I would fall and hurt myself, so I went ahead and got my chair". Now they have atrophied and can no longer walk. I want to live to be 101.
Ed Tobias
That's the right attitude, Linda.
However, you also need to use good judgment about when to allow yourself to use some assistance. I resisted getting my scooter for quite a while because I didn't want to become dependent upon it. When I finally bought one I was glad that I did because it allowed me to travel, and even to do some routine things that were sapping my energy.
It's a trade-off for me. I use my scooter a lot but I also try to walk, with two canes and a Bioness L-300 nerve stimulator, when the distance isn't great and I'm feeling good.
Right now I'm just finishing my first round of Lemtrada to see if we can get some life back into these old limbs.
Ed