Deborah's Story - Arm movement after a Stroke

I use my arms constantly, so when I suddenly couldn't move my left arm in 2001, it was particularly disturbing. That was a very stressful period in my life, and my doctor was convinced that I had multiple sclerosis. When I went to physical therapy, the PTs kept telling me that I was presenting like someone who had a stroke. With occupational therapy, regular massage & acupuncture, and vitamin supplements, I regained full use of my arm.  I was only in my 40's then.

But then, in July 2005, I was in Georgia at an outdoor festival. It was hot and I was dancing out in the sun. I was dehydrated, and suddenly, my left arm felt numb, just like it did in 2001. I just collapsed, right there. I kept thinking it was MS, so I didn't know there was urgency for medical care.  My brother came to Georgia to get me home and I waited to go the hospital until I got to Maryland. I wanted individual attention from a hospital with my medical records, where they knew what I'd experienced in 2001.

By the time I arrived at the same hospital, I could not walk, I didn't have balance or any strength in my left leg and I still couldn't use my left arm. They did many tests and finally, went back to the MRI films on file from 2001. Then, they realized I'd had a stroke in 2001 and had a stroke again that summer in 2005.

I had excellent rehab and within three weeks, I was walking with a cane and left the hospital. At home, I continued with OT and PT. I could walk, but I could not use my arm or control my movements, and here I was, trained as a massage therapist! I didn't work for six months and it was awful.

It never occurred to me that I would have any permanent damage or that I wouldn't be able to resume what I had been doing before the stroke. I kept starting questions for my therapists and doctors with the phrase, "when will I be able to.."  There were so many activities I wanted to resume. What was shocking to me is that the doctors and therapists were using phrases like, "you may never be able to." and that was just devastating.

I was so determined to improve; I tried lots of different options. About two years after my stroke, I was told about the BATRAC (brand name "Tailwind") clinical trial. I could extend my fingers and arm and I could reach my arm over my head, but I could not open door knobs or put a key in the lock, so I was a good candidate for the clinical trial. The researchers wanted people in the trial who had not regained their arm and hand movements, even years after their strokes.

My goal was to get more fine motor skills, more accuracy with my arm, and have less tremors and more strength in my arms.

I worked on the BATRAC for six weeks, three times per week, and I did see improvement very quickly. I had much more awareness of my left arm. I have more body awareness, more strength, and my range of motion improved. 

I can also use my fingers more accurately and can control my smaller motor motions more.  My arm has become much more accurate - my control, too. If I reach out to touch something, I'm likely to be able to touch it. For example, if I'm trying to get my laundry and reach out to take it from the washer into the dryer, now I can grab the right clothes. Working with the BATRAC helped me accomplish the goals that I wanted to reach with my gross motor skills.

I believe strongly that my health is my responsibility. I was determined to improve. There is no magic pill to help you recover. Some treatments take a lot of effort and cost. I've gone to stroke survivor support groups and told people about the BATRAC. I tell people about my experiences because I want others to be able to learn or benefit from what has happened to me.

Since my own experience, I now am adept at massage therapy for stroke survivors. I know exactly where to put emphasis and how to help others feel better through massage. But often, people will say to me, "massage isn't covered by insurance" or "I don't get reimbursed for that."

My feeling is that is the wrong approach. I was out of work for six months and wiped out my savings, but I knew that I had to invest in my own health and my own treatments.I was determined to improve. My health is my responsibility.

The medical specialists - doctors and therapists - were telling me that I might have severe setbacks and to be prepared that there were movements that I might never be able to do again. But I decided I'd work harder and keep trying different options. I don't put limits on myself. I don't know what will help me improve, unless I try it.

Try everything you possibly can - that would be my advice to any other stroke patient - and you have to trust that you'll get better. Our potential for health & healing is unlimited when we believe it is. The only limits are the ones we impose on ourselves.

Optimal health is a necessity, not a luxury. Don't put limits on yourself.