While proceeding through each day, the extreme difficulty in moving and bending my joints, on my left side, was explained to me as profound muscle weakness. I figured over time my muscles would get stronger as I engaged in my therapy and that I would gain back full function and mobility. I soon was to learn that muscle weakness was not the whole picture. As my inpatient therapy continued, Renee tried to have me go up a small set of stairs. When my left leg would not bend at all to go up to the next step I looked back at it, as if by staring at it, I could will it to bend. It remained straight and bendable as steel. To several those who have tried to bend my leg or elbow for me, I have asked how they would describe tone. The most apt descriptions are: "involuntary and severely strong constant contraction of muscles"and "intense rigidity of the muscles." I asked Renee, "Will this tone ever go away?" She replied, "No, but your muscles might get strong enough over time to overpower it." Grim! Conditions that exacerbate my tone are emotional upset, being cold, fatigue and inactivity. The tone makes me feel shackled and imprisoned. I have fought for 2.5 years now and continue to fight everyday to strengthen the muscles I can move. Complicating this effort to move and strengthen my muscles is that many of the neurons that connect and "talk"to the body's peripheral nervous system were destroyed in the hemorrhage. So when I try to move certain muscles I can't even find them in my brain to initiate the movement. Part of my therapy includes using an electric stimulation unit which provides biofeedback to the brain, trying to reteach the brain to restablish those connections. This is how it works. I place electrodes on the belly of the muscle I am working on. The stim unit is designed to send an electrical charge to the electrodes when it detects any motion in the muscle. This electrical charge is delivered to the muscle and causes to muscle to contract thus, bending the joint. Overtime this causes the brain to make connections blown out by the bleed. Each time I move the muscles ever so slightly the muscle very slowly gets stronger. It is a painstaking and very difficult, slow process. It is hard to see any real progress. The most effective way to get the muscles and brain to begin talking to each other again is to have the muscle in question bear weight. This was why my first therapy task with Renee was standing. Weight bearing sends powerful messages to the brain causing connections to be restablished faster. This is why most stroke survivors who regain muscle function get it in their legs first rather than their arms; we don't don't bear weight on our arms & hands.
There is a positive side to my tone. Without it my muscles would be so incredibly weak I would not be able to stand at all, much less, walk. My left leg would be a wet noodle and collapse beneath me. The tone keeps my leg rigid and tight which allows me to walk, albeit with an abnormal gait.
I started being able to walk very short distances (10-15 feet) with a cane 4 weeks post stroke. I now can walk out and about relatively safely with my cane. When at home and feeling strong I even toddle about caneless. I still have tremendous trouble bending my left leg at the knee when I walk so I walk with a kind of like a gangster wannabe -like gait, left leg mostly straight! One of the very first things I heard about physical therapy was to NEVER stop it. I see now that if I stop PT ,as much as I'd sometimes like to, I will not only stop making progress, but will lose the progress I've worked so hard to achieve. Once, while speaking with a friend on the phone I was describing my PT session earlier that day and he said, "Oh, you're still doing that?" I replied, "I will being doing therapy for the rest of my life."
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