It's been 7 1/2 months since I got GBS, and I'm finally seeing the rapid rate of recovery that is expected in the latter stages of the illness. Two days ago I rode the spinner stationary bike for the first time, putting in a solid 20 minutes after doing a 45 minute walk around the house. I also made sure to get some wall squats in which strengthen the quadriceps. The spinner focuses on different muscle groups than walking and helps strengthen the hip flexors in particular. I also felt it working my ankles through the repetitive motion-- a welcome sign given that my ankles are an area of weakness and I have trouble with heel raises. Later in the afternoon after resting for a while I did a walk in our hilly neighborhood, going 0.8 miles with the aid of a cane on the steepest parts. Not bad for one day of recovery!
Doing the PT to the best of my ability gives me a feeling of satisfaction. I am not just waiting to get better; I am putting in work each day that helps me toward that goal. It is rewarding to see my progress and especially rewarding now that I am really on the upswing. Yesterday my internist gave me the green light to take the Metro by myself in D.C. So I'll be back on the subway and able to get around the city! I'm already making plans to get together with people. I heard about delays and recent deaths on the Red Line-- the line closest to my house -- but remain undeterred.
We have had the benefit of magnificent spring weather of late in Washington and it has no doubt helped to lift my spirits. After a long, snowy winter of being stuck inside and trudging the hallways of Manor Care Potomac with the aid of a walker it is a blessing to be out in the great wide open strolling the tree-lined streets of D.C. with the minimal assistance of a cane.
Sunday, May 18, 2014
In my last post I wrote that the images I was able to come up with as I lay in the ER of paralyzed people whose fate I might share were of super heroes whose powers had been incapacitated as part of their paralysis. Professor X with his peculiar levitating chair and bald head stood out in my mind. The image was so bizarre as to be almost funny, and my situation still felt so surreal in those first few hours that to envision myself as a Professor X in my future life added another degree of absurdity to what was already impossibly happening to me. My legs had collapsed under me like one of those little toy animals: you press a button and the creature, which is help tautly together by string, collapses as the strings holding together its limbs slacken. I had one such toy as a child: a pink, plastic giraffe on a small cylindrical stand that I had won at a carnival. My limbs had become as weak and useless as the toy giraffe's in the fallen down position.
Fortunately for the giraffe, as soon as the button is decompressed, it springs to life again, its limbs tight and firm again, its little pink body and neck upright. It would take months of gradual recovery--a process I am still undergoing-- for me to stand upright and walk without the aid of assistive devices. It took me from October 8th, 2013 until Valentine's Day, February 14th, 2014 to stand up from a chair without the assistance of another person helping me up. I relied heavily on my arms for the initial push upwards.
Through hard work pushing through pain and the obstinacy of my body with its atrophied muscles and demyelinated nerves I have regained my own super powers. Not X-Ray vision or telepathy or flight, but standing on my own two feet, climbing up and down stairs, showering and using the bathroom without assistance, lifting objects and fine motor skills, and most importantly walking. There was a time when I doubted I would ever walk again, even though as I left Mount Sinai Hospital after a one-month stay Dr. Laura Marcuse told me that I would. It just seemed impossible given my incredible weakness at the time.
If I have learned anything from this whole experience, it is the value of persistence and patience in the face of adversity. For months I had very minimal gains. During my first month, I had a measured grip strength in my hands of ZERO pounds (average for a male my age is about 120). A month or two in I was up to three pounds. Gradually I made my way up into the teens and double digits, and I now have a pretty damn solid handshake. A super power I regained at four months into recovery was the ability to open a pop top on a soda can. Something to be grateful for. Can you imagine what it's like to be that weak? Thankfully other fine motor skills such as typing and using mobile phone devices returned earlier in the recovery process, allowing me to communicate better with friends.
Recently I went out with friends for the first time since I was put in the hospital last October. Nothing special, just an evening of pool and dinner at a Thai restaurant, but man was it awesome to rejoin society! I managed the steps down into the pool hall without any problems although there was only one rail. I had a great time reuniting with two of my old friends. Both had come to visit me while I was in the rehab facility in Rockville, but it's totally different being out with friends on the town than having them visit you when you're in an institution. I finally feel like I'm regaining my freedom and getting back to my life! I'm very grateful.
Saturday, May 3, 2014
As I lay in the curtained-off area of the ER and listened to the cacophony around me, dozens of confusing thoughts and sharp fears ran through my head. What was happening to me? The weekend before I had been happily socializing at an event for students in my Master's program. Life seemed dandy. True, I had recently recovered from a nasty stomach bug whose symptoms resembled dysentery, but I was over it and back to enjoying life. I relished the opportunity to get to know my new classmates better and meet some of their significant others. I had just started the program in Mental Health Counseling a month before in September 2013 and was still getting settled in.
Two days later I got hit with the early symptoms of GBS, which I described in my previous post, and the next morning found me flat on my back in a hospital gurney. I had asked the EMTs who drove the ambulance to take me to Mount Sinai, which was close to where I lived in East Harlem. I could feel my legs; they were there all right-- but I couldn't move them. I could wiggle my toes just a little bit. It was like being a puppet with loose, dangling legs, except mine were weighty and unwieldy. The doctors did tests to see if I could feel--running something wooden like a golf tee over the bottom of my foot, for example--and I felt it. The movement in my legs just was not there anymore.
After being visited by several doctors who asked about my symptoms including my recent flu-like episode with the stomach problems, a young resident came in and gave me a provisional diagnosis. "We think you may have Guillain-Barre Syndrome," he said. "It's a difficult disease, but about 80 to 90 percent of patients make a full recovery." What happens to the other 10 to 20 percent? In other words, a 10 to 20 percent chance I'd be paralyzed for life?!?!?
"Don't tell me what happens to the other 10 to 20 percent," I said. "I'd rather look on the bright side for now." Images ran through my mind of paralyzed people (since I didn't really know any paralyzed people personally, most were imaginary or conceptual to me: Christopher Reed; Super Man left a quadriplegic, Professor X in his levitating chair-- strangely all seemed to be super heroes divested of some of their former powers and strength. Only now, almost seven months later does it occur to me that although Professor X lost his physical powers he retained and even honed his mighty psychic ones!) Would I end up like them? Would I spend the rest of my life in a chair? What would life be like as a handicapped person? Could I possibly handle it? These thoughts all rushed together in a blur of images and chain of fears. There was a sense of vertigo--of being on the edge of the abyss--but also a sense of acceptance; here I was, it was happening, and there was nothing I could do about it.
TO BE CONTINUED