Therapies for my stroke recovery will continue to be an important part of the rest of my life. Like exercise is an important part of anyone’s life who wants to be healthy. My stroke caused paralysis, as well as, muscle weakness and loss of function. Stroke recovery therapy for me focuses on strengthening muscles, relearning how to do things (move) and adapting the “how to” with my body’s current post stroke condition.
Movement Doesn’t Require Feeling
My original diagnosis of Locked in Syndrome and the treatment pathway the doctors and therapists placed me in determined my treatment plan. The treatment consisted of passive range of motion exercises, use of the movement I had retained (facial muscles -eyebrow lift and mouthing of words) and lacked anything which encouraged new independent movement. For the six months I was in a rehabilitation hospital I never tried to move, because I couldn’t feel anything. I didn’t think movement was possible. A week before I was released to go home my regular occupational therapist was off. her replacement for the day, Dale, asked me to try to move my finger. Since my admission to the hospital and initial assessment I hadn’t been asked to attempt to move. To my surprise I wiggled a finger I couldn’t feel. I told my regular therapist when she returned, but I couldn’t repeat the movement. She didn’t believe me.
Consequently, I learned that a muscle can become fatigued and may not be able to repeat an action more than once in a day, by the next day, next week or for even longer periods of time. In short, stroke recovery is comprised of a lot of slow incremental progress and setbacks. Whenever I’m sick I tend to regress and sometimes I lose all progress or strength. Two steps forward and one step back characterized and still characterizes my stroke recovery. When I work my butt off to strengthen a muscle and regain an ability only to get sick and lose all progress it’s easy to become disheartened. Depression and discouragement battle with determination, faith and hope.
None of the medical professionals had believed I moved my finger, because I failed to repeat the action. In the past, I had mistakenly judged a spasm to be voluntary movement. Thank God, my mom had witnessed it. So, after we left the hospital my real rehabilitation began. My mom was my drill sergeant, respiratory therapist, creative rehab specialist, and nurse and most days she was all of them at once and more. The brain scans, diagnoses, doctors, therapists and medical books hadn’t discouraged her.
Mom’s Always Right
When I first began to recover body movement I was eager to work on my rehabilitation for my stroke recovery under the direction of my mom in any way possible. After four years past of lung, occupational and physical therapy eight hours a day, I burned out. So, I refused to continue any therapy. Beginning in 2002 I chose to do only passive range of motion and lung treatments and nothing more until 2015. The constant therapy had been a mistake. Instead adoption of a more reasonable schedule would have resulted in a willingness to take a break and continue in a month or so. I decided against devoting any more time to therapy. Continued attempts to gain more movement or function weren’t worth it to me. After all, what good would it do me, if I wasn’t living? I had sufficient function of my left arm and hand to type and use a computer mouse. It was enough. I was tired of having no life. In short, I wanted to find a way to earn an income and interact with the world around me. The computer offered a window to the world and something that I could do independently.
In 2015 I noticed my arm, hand grip and even voice had lost strength. Mom had warned me when I halted the therapies I would regret it. To her credit she didn’t say, “I told you so.” when proven right. So, I enlisted the help of a speech therapist who taught me some exercises to strengthen my voice. See previous post to learn how ventilator-dependent, Jessica Kennedy speaks ,http://www.thequadspot.com/how-ventilator-dependent-jessica-kennedy-is-able-to-speak/Then I worked with a physical therapist, Eric Stout, who showed me ways to strengthen my arm and trained me to drive a new wheelchair. Stroke recovery requires a patient’s willingness to follow an exercise regime with a therapist and the drive and commitment to work toward goals in the absence of a therapist on their own. After a therapy session and exercise, I am worn out. As a matter of fact, it’s not unusual for me to be unable to scratch my nose or change television channels with the remote control by the end of the day. However, there was a day I couldn’t move my hand or arm at all. I am thankful that most of the time I can. Things that used to come easily, without much thought and effort, are difficult and sometimes impossible.
For example, it took six months before I moved anything, but my eyes and facial muscles. Then it was a tiny wiggle of my index finger. After nine months I was able to move my head left and right.
Stroke recovery continues today. When I stopped therapy, I regressed. Like a weight lifter loses the ability to lift heavy weights if they quit lifting, I lost strength. In contrast, I wasn’t worried about lifting heavy weights, but struggled to lift my arm or grip the television remote control. Consequently, I learned the hard way [as usual because I’m so hard headed] I will lose function, strength and flexibility if I am not diligent about exercise and stretches to prevent muscle contractures. The temptation to skip therapy remains, because maintenance of my blog and YouTube channel and preparation of blog posts takes me longer periods of time to complete than in my pre-stroke days. When my occupational, physical and lung treatment therapies, bath and morning routine is completed the time is between noon and 1:00. My day begins at 6:00 a.m. If I skip the therapies I can get more accomplished. I don’t always do all my therapy. Some days I just want to be left alone, but that’s the exception. It must be, because it takes too much time and effort to regain what I lose if I get lax. A day off occasionally, is okay and probably good for my mental health, but I don’t want to lose the ground I’ve covered. It takes too long to get it back.
Please feel free to comment and ask questions. Watch for the upcoming video that shows some of my current physical therapy.