Shan Carter
Oklahoma City
Diagnosed with MS in 1999
I first noticed something was wrong when I went to my mom’s birthday party. I picked up my little nephew to show him some fish in an aquarium. And I just fell over. It came out of nowhere. I was 32 years old. I’d just finished playing three soccer games in a row.
Within a month, I couldn’t move anything but my arms.
I spent the next six weeks in the hospital. It was all a blur. My systems were shutting down one by one, and it seemed like nothing was helping. Panic set in. Finally, I said, “Just let me go home to die.”
That was a low point.
The doctors gave me steroids, and I was able to walk again. Eighteen months of steroids got me up, but it eventually got me down. I went from a size 8 to a size 26. My own family didn’t recognize me. It would be years before I needed a cane, but the steroid treatments eventually destroyed my hip. They drilled a hole in the bone to restore circulation, and that improved things for a bit. Then I developed scoliosis from using the cane. Spasticity and a broken ankle eventually took the use of my legs.
The thing with MS is that you can’t just take medicine and make it better. It’s an inflammatory and degenerative disease, and I know I have challenges ahead of me. In the past few years, I’ve gotten optic neuritis three times. The last time, I lost all the vision in my left eye. It’s never come back.
Now I spend my days in this chair. I call it my luxury vehicle, because I could have bought a nice, loaded Honda for about the same price.
What is MS?
In multiple sclerosis, the immune system attacks myelin, the protective covering that surrounds nerve cells. The resulting damage interferes with nerve signals the brain sends to the body, creating the neurological equivalent of a bad connection on a phone call.
Symptoms differ from patient to patient but can include
- Double vision or blindness
- Cognitive impairment
- Chronic pain
- Impaired balance
- Muscle spasms
- Incontinence
- Loss of muscle control in any part of the body
- Heightened sensitivity to heat or cold
- Extreme fatigue
Approximately 2 million people worldwide have MS. The disease typically strikes between the ages of 20 and 40, affecting women three times as often as men.
Alea Hubbard
Tulsa
Diagnosed with MS in 2005
It didn’t care that she was only 17. That she was a dancer. That she was going to travel the world, have a family, run a restaurant or maybe a hotel.
The disease paid no attention to her life or her dreams. It chose her anyway.
Doctors found three lesions on her brain, another on her spinal cord. She held her breath, waited for a diagnosis. The good news finally came: It’s not cancer. But then the bad: It’s multiple sclerosis.
Family and friends smothered her with hugs. Held her tight. Told her everything was going to be alright. But she could tell they didn’t really believe it. They choked back tears when they talked to her. She caught somebody whispering condolences in her mother’s ear.
I’m not dying, she thought. Or am I?
Life changed fast. She’d always hated needles. The long, sharp pieces of metal piercing her skin. The quick, sharp pain. It made her shiver just to think about them. But now they’d always be a part of her life.
She opted for the medication that required the fewest injections. It was silly, she knew. But this was her life; she’d deal with MS on her own terms.
Her mother helped give her the shots. And they worked. She no longer felt like the walking dead. She had energy.
Doctors did another MRI. She held her breath. The lesions on her brain had…shrunk.
She knew she wasn’t out of the woods. Never would be. But she’d keep getting the shots. So what if they sometimes bruised her? Gave her headaches and chills that made her bones feel like ice?
Consider the alternative.
Now she’s 24. Finished college. Married. Working hard to make a career.
She knows that MS doesn’t care. That her disease will not sleep forever. But she’s made a choice. A decision not to live in fear. She’s chosen to embrace hope.
Treating MS
Physicians can alter the course of MS, decreasing relapses and progression of deficits with the use of immunotherapy, but there is no cure. Steroids, muscle relaxers and antidepressants can help improve symptoms, but long-term use can cause other side effects that may require additional treatment.
The perplexing nature of this disease prompted OMRF in 2011 to open the Multiple Sclerosis Center of Excellence, the region’s only comprehensive center for treating every aspect of the condition.
“We are committed to seeing the patient through all the challenges they face,” says the center’s director Dr. Gabriel Pardo. “It takes a team with the right resources, manpower and physical space to keep up with the needs of our patients, and we’ve established that here at OMRF.”
The MS Center provides treatment, physical therapy, ophthalmological care and social services to patients from Oklahoma as well as Texas, Arkansas, Missouri and Kansas.
“The best gift I can give a patient,” says Pardo, “is a medication that controls their disease—at least until we have a cure.”
