Diagnosis: Relapsing remitting Multiple Sclerosis
Diana was delighted when her doctor at Johns Hopkins confirmed in October 2012 that she was holding her own against her MS. Her commitment to staying active was really paying off!
Diana was diagnosed with relapsing remitting Multiple Sclerosis in 1993 and experienced a period of deterioration in health over the next 17 years, until she was referred to Dr Becker at John Hopkins Hospital and commenced treatment at the Kennedy Kreiger Institute (KKI). It was at KKI that Diana was first introduced to the RT300 and the value of using Functional Electrical Stimulation (FES) to reactivate her weak muscles so as to rebuild her strength and stay active.
Diana acquired her own RT300 in October 2010, and while she is the first to admit that she does not use it as often as she should, she credits the RT300 with helping her ability to maintain an active lifestyle and hold back the progression of her MS.
She had previously reported benefits from using the RT300 in terms of noticing fewer muscle spasms, having less muscle atrophy, and finding easier to move around. This year she talked about the benefit of the cardio workout and how she believes it helps her recover from respiratory infection.
In recent years when Diana has been sick, which usually starts with a cough and leads to a respiratory infection, she would take to her bed until she recovered, usually about 3 weeks. This year, despite feeling weak she decided to get on the RT300 after one week and let the stimulation do its work. Diana’s perseverance paid off, and she found she was feeling much better sooner. She believes that using the RT300 to continue physical activity even when she felt weak was the key to her faster recovery.
Diana got out of bed and fell to the floor. Her legs had suddenly collapsed. As soon as she regained sensation, she went to a neurologist. The doctor didn’t waste time on a bedside manner. Looking at the floor the whole time, he delivered his decisive diagnosis: multiple sclerosis. That was in 1993.
Diana didn’t know what MS was, but she quickly grew to know it intimately. Initially her relapses were only about four times a year. During those periods, she lost sensation in her legs but could still walk. She looked drunk as she clung to the walls, but she was walking. Then she started using a hiking stick (her pride refused a cane). After five or six years, she went to a walker. Eventually, she sadly gave in to a scooter, which was a blessing and a curse: it allowed Diana to keep up with her busy day-to-day life, but it also allowed her legs to atrophy.
The specialists didn’t help much. “Don’t exercise,” they told her. “Don’t get hot.” “Don’t, don’t, don’t.” Diana wasn’t hearing many “do’s.”
Then she started seeing neurologist Ben Greenburg at the University of Texas Southwestern in Dallas. Recently relocated from Johns Hopkins, the doctor suggested that Diana go to Kennedy Krieger Institute. “You’ll be amazed,” he told her. And she was.
This is a good point to let Diana take over the story:
“I can feel! That’s
what got me crying. After two weeks on the RT300, being able to feel your
muscles, having that sensation—after two weeks I was pushing the RT300 with my legs myself!
It was a ... I can’t think of a word that’s big enough … it was a magnificent moment.
“I didn’t believe the therapist at Kennedy when she told me how fast I was going and what resistance I had worked up to. The first time I got on the RT300 I was worn out after ten minutes. When I left KKI, I could go for thirty minutes easily.
“Anybody who wants to improve or maintain their strength, this is the way to do it. In fact, the very first thing I would tell anybody with MS is START EXERCISING—even if you’ve never been active in your life. START NOW. Here’s my theory: if I continue to work and keep my muscles strong, then when there’s a cure I’m going to be able to walk again because I’ll be ready. That’s why I go to Pilates two days a week now. I have a personal trainer I work with once a week. I do water walking. Whatever you can do to stay active and ready for that cure, do it. Don’t end up in bed. Get up and find a purpose."
I love having my own RT300. I can use it when it’s snowing, I can use it when it’s raining, I can use it whenever I feel like it—which is more than what they originally prescribed for me. I do it three days in a row sometimes. It helps my muscles, it helps my mind—it makes me feel good about myself. I’ve noticed fewer muscle spasms. Less atrophy. Better range of motion. And here’s another triumph: in Pilates, I used to not be able to do the therapy motion. My legs just couldn’t do it. But now, with the RT300, I can do it. I can trigger that muscle memory even when I’m not on the RT300. And I can walk in the pool. I used to drag my feet to the point where I was really just standing in one place. Now I’m slow, but I’m walking in the pool. And that’s 100% due to the RT300. It’s helped my legs regain strength.
“The RT300 is the only thing I’ve seen so far that really strengthens my muscles. I’ve gone from having legs that couldn’t push me away from the table, to being able to stand up and brush my teeth. Slowly but surely I’m regaining what I lost when I gave in to the scooter. And one of these days, when they have a cure, I’ll be walking again.”