Hello, my name is Amy Schwarber and I was diagnosed with multiple sclerosis 5 years ago. Before that …
… I was a student, an athlete, and a child of a parent with MS. Thanks to my mother, Barb, I had (to say the least) a basic knowledge of the disease. I researched it for school papers, my own curiosity, and my mom even participated in a school program called Everybody Counts to explain her disease to my classmates. I never could have imagined the extent to which this knowledge would come in handy.
It was Christmas Eve 2005, and I came home to spend the holidays with my family. The day was going great! I remember talking with my parents and brother on our way to church, just catching up on life and enjoying the company. Everything was normal and life couldn’t have been better as we walked into mass. The ceremony was beautiful, and as we headed to my grandmother’s house to celebrate, we were filled with the joy and anticipation of the season. I was yakking away in the back seat of our van when the left side of my face (including my tongue) quit working and turned numb.
The words I was trying to say wouldn’t come out; instead, it was an unintelligible garble. Immediately, everyone turned around, and I could tell something was really wrong by the look of horror on their faces. They kept asking what was wrong. I kept trying to answer, and, as I heard the awful sounds coming from my mouth, I began to get really scared.
We were close to my grandmother’s house so we continued there instead of diverting to a hospital, primarily because one of my aunts is a Doctor and one is a Registered Nurse, and they were there waiting. As we walked in, I noticed I had begun to drool and had lost all feeling in the left side of my face. I went to the bathroom so I could get my head together! What was going on? My left hand didn’t want to cooperate either! I began to cry as my aunt’s told me they thought I was having a Bell’s Palsy attack.
We quickly got back into the van and rushed to the hospital. They ruled out a Bell’s Palsy, and began checking to see if I had a stroke. That came back negative. They admitted me to the hospital, and I kept explaining as best I could that my mother has MS. They said it didn’t matter, because it wasn’t hereditary. The tests continued – CAT scans, blood tests, X-rays, and so on – days were passing, and still no diagnosis. i didn’t realize how many times and in how many places they were able to stick you! Several days passed, and they did an MRI just before the New Year.
It finally came to light… I had 3 lesions on my brain. The diagnosis: I had MS. As the words rolled off the doctor’s tongue, everyone in the room began to cry. I was crying, mainly because it was a relief finally hearing a diagnosis. Everyone else, because they understood what was facing me. It’s a devastating disease, one that affects 2.5 million people, but one that has no standard course, no real prognosis, and, most importantly, no cure. But I didn’t feel too bad – I had the best resource in the world – my mother – to draw on. And with her “never quit” attitude, she was an extremely positive role model.
That year and most of the next went pretty well, so I became complacent, skipping doctor’s appointments (or not even making them) and continuing my life as if nothing had happened. I was a general manager at a pizzeria, working 70-80 hours a week. Finally, in 2007, it caught up to me with a vengeance! I was hospitalized virtually every month with a serious exacerbation. They were coming so close together that another one would begin before I had even recovered from the previous one.
Unable to walk, with no ability to control my bladder or bowels, unable to write or type, I finally accepted the fact that ignorance wasn’t getting me anywhere. My neurologists suggested that I apply for disability, so I did with the help of an attorney, who advised me that it would most likely take a couple of years. Much to my surprise, 6.5 months later I got my letter of approval. That is when it hit me – because of my ignorance, I had let my MS progress so fast I now had 18 lesions on my brain, 3 on my spine and a lifetime of therapy ahead of me. I knew that I HAD to change my attitude.
Knowledge is power. So I started again, researching the disease from a “patient’s” point of view. I went to every doctor’s appointment. It seemed as though it was every day of the week. NEVER QUIT. My mom doesn’t know this, but that is what I would say to myself every day when I woke up – every time I stumbled; fell; had problems typing; or incontinence struck; you name it. Something else mom told me also helped me through the everyday difficulties MS patients face: When you stumble, make it part of the dance (they actually have a plaque that says this displayed prominently in their condo). I began to accept and adapt to my “new” body. Survival of the fittest, ya know? What other option is there; just lay there and feel sorry for yourself, defeated?
In February 2009, my wonderful team of neurologists who worked so hard on my case made a couple of discoveries. First, they noticed that many of my hospital stays were 1 to 2 days after I started my period. They decided to suppress my periods. They also put me on a risky “last resort” therapy called Tysabri since my other medications had been ineffective. Within a couple of months I could walk, talk, write, type, and control my bowels and bladder. Now, two years later, I have lost over a hundred pounds and haven’t experienced a single serious exacerbation.
So, if you learn anything from my story, let it be this: ignorance may be bliss, but knowledge is power. A strong support system is priceless, and I thank God every day for my extended family – parents, grandparents, aunts, uncles, cousins, and friends – especially my parents! And a good and knowledgeable caregiver makes life much more livable.
My advice? Be proactive, and of course, NEVER QUIT!!! I love you mom! Thanks Joshua! And all my thanks to everyone who has prayed for us, researched, walked, or donated for the cause! And thank you very much to my father for taking the best of care of my mother, me, and all the research, effort, and time he has put into this website to hopefully help as many people as possible.