Multiple Sclerosis: Challenging, Not Devastating
Fourteen years ago when diagnosed, I was having vague, on and off symptoms, i.e., tingling in my lower extremities, frequent stumbling and tripping, going to the bathroom more than usual with a sense of urgency, and intense burning sensations on both thighs.
My leg muscles seemed to be weakening, they felt unusually heavy and my gait was a bit off, causing me to stagger. There was also some spasticity present. As time went on, my symptoms were becoming not only annoying, but persistent as well, which finally led me to a neurologist. Months of testing ensued and a diagnosis of Primary Progressive Multiple Sclerosis was handed to me, confirmed by more than one neurologist. My earlier symptoms persist today, but are more pronounced making it impossible to hide my struggles with walking.
About a year after being diagnosed, I tripped and broke my ankle. After weeks of healing and more weeks of physical therapy, I began using a cane. Today I am able to walk about 15 ft. without assistance. But doing so causes crushing fatigue and discomfort below the waist, making unaided walking extremely difficult and unsafe. In the ensuing years, my symptoms steadily worsened making the use of a cane, walker and scooter a permanent necessity. I use my cane and/or walker around the house and my scooter when out of the house.
Other assistive devices I use are: 1) grab bar outside the shower stall; 2) shower seat with handles and backrest; 3) toilet rail, which helps me to stand and be seated with greater ease; 4) stand-up assistant device, for chairs/sofas with no armrests, or armrests that are too low and far apart. (Watch YouTube video- Stand Up Assistant2.wmv. This device makes standing a breeze); 5) stairlift, which allows me to ascend and descend home stairs; 6) hand controls will be installed in my next car, coming soon.
For exercise, I have a rebounder for bouncing. It has a stablelizing bar that I hold on to for stability and help with getting on and off. Rebounding is an activity that consists of bouncing and/or jumping that everybody can do, regardless of age or physical condition. And my favorite activity is therapeutic horseback riding, which I do 2x/week. My riding instructor and her volunteer assistants have outstanding horse and people skills. I cannot praise them highly enough for the wonderful service they provide to disabled kids and adults.
Many individuals with MS, myself included, experience some cognitive deficits. Mine include occasional forgetfulness, and at times, finding the right word when expressing thoughts. And, there are the emotional aspects that surface from time to time, i.e., sadness, frequent frustration, and occasional low energy and motivation. These mood states tend to come and go and usually don’t last very long. In the end, I believe happiness is a choice; if you act happy, you’ll feel happy, a technique Dr. Laura advocates. Also, being happy doesn’t mean everything is perfect. It means you’ve decided to see beyond the imperfections, which is what my therapist taught me a few years ago. Finally, interactions with family and friends, reading, keeping up with national and world events, listening to music, watching movies, and therapeutic horseback riding add greatly to my overall well-being.
The rest of my story would be incomplete without mention of my wonderful husband Donn and our terrific teenage son Steven. I owe them a debt of gratitude for their willingness to be of help, i.e., the countless times they have come to my aid and for the constant patience and understanding both have given me under difficult circumstances at times.
In a nutshell, the adjustments to having MS have been challenging, but so far, not devastating. I do not believe, that because of it, I am ruined or destroyed, as implied by the word *devastating* that is so often associated with MS. However, I am resolved that my life is permanently changed, and that attitude is everything in making peace. The inspirational evangelical pastor and author Charles Swindoll says the following:
“The remarkable thing is we have a choice everyday regarding the attitude we will embrace for that day…. we cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude. I am convinced that life is 10% what happens to me and 90% how I react to it.”
Along the way I have learned that MS can be successfully managed, and that, in spite of having MS, I am basically the same person on the inside that I’ve always been. I try to remember to count my blessings daily, not my troubles. I hope sharing my personal experience with MS has been helpful to others in some small way, whatever the life-altering circumstance may be.
Final Thought: “Whatever happens, dust yourself off, adjust to the new realities of your life, and carry on. Whenever possible do this with a smile.”*Enjoying The Ride* Blogger, Mitch