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I was first diagnosed with remitting-relapsing multiple sclerosis (MS) in October 1993, at the age of 29. It was just 6 months after the birth of my second child, Zachary.
Shortly after Zach was born, I began to experience numbness and tingling in my legs. Looking back on it now, I remember that I also noticed some of these symptoms 3 years earlier, after the birth of my daughter Jamie.
My ob/gyn thought the numbness and tingling after Zach's birth might be the aftereffects of the epidural I'd received at the time of delivery. He sent me to the hospital's physical therapy department for evaluation. The PT, in turn, sent me to a neurologist, who quickly diagnosed me with MS.
It was then that my life with MS began.
Growing Into the Diagnosis
I don't really remember how I felt about the diagnosis, except that I understood it wasn't a death sentence, and that having MS was preferable to the many other diseases I'd convinced myself I had. Except for the occasional numbness and tingling, I really didn't have symptoms, so I wasn't really sure what to make of the diagnosis.
My friends at work tried to make the best of the situation. They suggested I get a handicapped parking sticker so we could get better parking spots at the mall. I guess they didn't really know what to make of my new condition either. Our way of dealing with it was by making a joke. Otherwise, we'd cry.
Since I didn't know much about MS, I tried to learn as much as I could about it and how it would relate to my life. I tried to find a neurologist with whom I could comfortably work and grow into my diagnosis. I'm not a gloom-and-doom person, and I couldn't have a doctor who was gloom and doom, or even one who was "business as usual." I needed someone who was upbeat, who could keep me upbeat, and who would be on the cutting edge of keeping me active and involved. I went through several doctors before I finally found Dr. Heidi Crayton (now of the MS Center of Greater Washington) at Georgetown Hospital.
I have a family. I'm far too busy for MS. I just don't have the time for this disease, and it was crucial that my physicians understand that, accommodate that, and be out in front of me to meet those needs.
MS Rears Its Head
I had my first real exacerbation in 1996. At that time, my doctors offered to either let me experience and emerge from it naturally and without medical assistance, or to manage it with steroids. My doctors preferred a natural approach, so there was no steroid treatment. They did prescribe some physical therapy that was poor and ineffective, and as a result, I suffered some damage due to the exacerbation. Eventually this led to foot drop.
During this first exacerbation, my leg became very weak and numb, and I purchased a cane to help me get around. Purchasing the cane was much harder than the actual diagnosis. I was only 32, I'd been very active, and the thought of having to use a cane was horrifying and devastating. But it needed to be done. From that point on, I came to rely on the cane more and more, and even began using a wheelchair for shopping outings, moving through airports, and for covering long distances.
By 2001, I came to feel very stiff all the time. The oral medications I used to control stiffness didn't seem to help my spasticity anymore. After consultations and careful consideration, I had a Baclofen pump implanted to help deliver medication directly to where it was needed in greater concentration. It did help, and I still have it today.
After my first exacerbation, we hired a cleaning lady to come to the house twice a month. (Along with preferred parking privileges, I guess you could call this another "benefit" of MS.) Eventually, grocery shopping became too difficult and I gave it up. I couldn't exercise like I used to, take walks, or go up and down stairs easily. I did my best to plug along, thinking that MS didn't have to stop me from doing things. Clearly, however, it did. Even when it didn't stop me, it noticeably slowed me down.
Then, in March 2008, my husband and I were watching "Good Morning America." We saw a story about a device being used for foot drop. I called Dr. Crayton to find out more about the device, and she said to come in and see her.
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PT Ramps Up
After Dr. Crayton examined me, she sent me to Body Kinetics Rehab in Annandale, VA, a private practice that specializes in neurological rehab. Owner Jessica To, PT, DPT, evaluated me for the foot drop device. However, after evaluating my strength, she determined that I was too weak; I needed to strengthen my leg before I could even be evaluated to determine whether the system would work for me.
And that's where my story changes.
Dr. To sent me home for 2 weeks of physical therapy exercises. When I returned, she told me she could get me walking without the device and without the cane. To hear that was astonishing.
My husband was concerned that Dr. To was being too optimistic, and he didn't want me to be disappointed if it didn't work out. I worked with Dr. To for 1 hour, twice a week, following up with PT exercises at home on my own. I also changed my almost-daily exercise routine to complement the PT regimen. With both of us hoping to achieve them, Dr. To and I set tough goals to work toward. Although I'd been to physical therapy three or four times before with other practitioners, and with limited results, this time was different--I was determined.
Dr. To was able to pinpoint exactly where my problems were, and we focused on these deficits to make them stronger. After every session, I'd tell Dr. To that I was bad for business--each time I left, I looked like I'd been put through the ringer.
I stopped physical therapy in December 2008. Dr. To released me with a detailed, self-executing home therapy plan. When I started physical therapy, I couldn't walk 10 steps without my cane. Today I can walk three quarters of a mile without it. At first, I couldn't do a single sit-up because my core muscles were so weak; now, I can do many. Lying flat on my back I couldn't lift my leg off the ground; I can now lift it repeatedly and with weights. There were so many things I'd given up on that I can now do again; physical therapy gave me back parts of my life I'd forsaken to the disease.
A Walk on the Beach
My children have mostly only known me with MS-walking with a cane or using a wheelchair when needed. They've never given any indication that it bothers them, nor do they seem embarrassed by me in the least. But I'm sure there were times when they were. I did as much as I could with my family--traveling for sporting events, going to school functions, coaching, and just spending time with them. But, there came a time that it became too difficult. The disease had limited me. As these limitations melt away, I know my family recognizes my progress, and they're proud of me.
One of my first goals after therapy was to walk on the beach in San Diego in June 2008, without my cane. I didn't actually accomplish this goal. However, last November I walked on the beach in Honolulu without my cane. I traveled to Honolulu alone (two planes, two airports and 11 hours) and without a wheelchair.
Before physical therapy, I'd never have thought I'd be able to do the simple things again that most people take for granted: walking the dog (something my husband and I hadn't done together in 10 years), vacuuming or walking on the beach. Today, I can do all those things again. I still use my cane when needed, such as walking a long distance or in a crowd, but it's only occasionally. I even completed the 3.5-mile MS Walk on April 11, 2010, in Washington, DC.
All of this is a dream come true--and proof you can never give up.
Teresa Rawson and her family live in the Washington, DC metro area.
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