Around the
Water Cooler
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The Journey to Painless Legs
by
Bob Segalman
Bob Segalman received a Ph.D. in Social Welfare / Sociology from the University of Wisconsin, 1972 and an honorary Doctor of Science from there in 2006. He retired from the State of California in July 2004 after 30 years of service. Bob is the author of: "Against the Current: My Life with Cerebral Palsy", Full Court Press/Attainment. Available at http://drbobsautobiography.org
he purpose of this writing is to remind myself and others that solving medical problems in aging people with cerebral palsy requires time and persistence. I want those around me to understand when I address current medical problems with obsessive tenacity.
This is not a story of my complaints as much as it is a way of telling other people with cerebral palsy about the possibility of these kinds of aging symptoms so that they can address them in a logical manner. It is only by looking back over the last 45 years that I can get the whole picture and see how pieces of the picture relate to each other.
While the primary story is about my leg pain, this situation was complicated by inadequate knowledge of the medicine that was used. Both my doctors and I did not understand the side effects of these drugs and their influence on my mood and my cognition.
Undergraduate and Graduate School
I was a college senior in 1965 and although I did not know it at the time, the muscles supporting my vocal cords were beginning to wear out and my right hip joint was beginning to show signs of wear. I’m not sure if my hip joint could have been protected if I had continued to wear the long leg braces that helped control my muscles between 7th grade and high school graduation. I gave up the braces because I could not take them off or put them on myself. That was in the days before Velcro and before college students with disabilities were hiring helpers so that they could live in a college dormitory independently.
As my gait was beginning to deteriorate and my voice was getting softer because of the conditions described above, my parents sent me to a local neurologist.
About that time, the medication Valium was just beginning to be used in cerebral palsy and physicians were very hopeful that it would be greatly beneficial to that population. Thus, when my neurologist became aware of what he thought were increasing symptoms of CP, he put me on Valium, probably without thinking about the potential side effects. He probably wouldn’t have done so had he realized that (A) I was being treated for depression and Valium often causes depression as a side effect, (B) Valium also has the side effect of limiting cognition, and (C) People with brain damage, such as that caused by CP, can be much more sensitive to central nervous system medications the general population is.
I must have a guardian angel, because I was seeing a counselor at the time, who recognized the medically induced depression during my weekly visit. I am not sure what my symptoms were, but his response was so strong that it frightened me. He called my Dad and the neurologist during that visit and the neurologist stopped the Valium immediately. He put me on one of the few anti-depressant medications available at that time, called Elivil. Fortunately, the Elivil worked well and my depression was gone in a few days.
What we did not know at that time is that the side effects of Elivil, which I used for about 20 years, would give me significant problems. Within several weeks, I noticed that ideas did not pop into my head as they had always done. Dad commented about that, but unfortunately, my reaction was shame. I had no idea that it was the Elivil which was interfering with my thinking. It would be 20 more years before I realized that Elivil was also responsible for my mild paranoia.
Thus it was in the fall of 1965 that I left El Paso to begin a Master’s degree at Florida State. The problem with Elivil became most apparent the next year when my graduate program required that I take a Statistics course similar to the undergraduate course in which I had made an easy “A”. This time, I barely got by with a “B”. It was also at Florida State that I became aware of pain in my right leg every time it rained, and it rains a lot in Tallahassee. During the summer of 1966, I finished my Master’s and made the mistake of stopping to see my neurologist during a visit to my parents before I went off to the University of Wisconsin, Madison to begin my Ph. D. For reasons I still don’t know, and will probably never know as my El Paso neurologist died recently, he took me off Elivil without substituting another anti-depressant medication.
At the University of Wisconsin and a Doctorate
As my readers will probably guess, six weeks into the Doctoral program I became very depressed. Fortunately, the depression was accompanied by severe constipation for which I sought treatment. The treating physician was smart enough to both take a thorough medical history and to ask me if I had ever been medicated for depression. (My guardian angel was doing a good job.) That doctor put me back on
Elivil right away and within a week I was back in class and doing well.
That first winter in Madison wasn’t bad. I had a little leg pain, but I bought a golf cart to get around campus after one of my friends suggested that I buy a horse. The golf cart was very useful, but I was so ashamed one day when I tipped it over, that I hurried on to my seminar in “deviant behavior” despite my profusely bleeding knees. The golf cart got me through two winters and was replaced by an adult tricycle. I fell off that too. In fact, one day I hit a patch of ice and rear-ended a bus in Madison’s famous “Wrong Way Bus Lane” on University Avenue.
One unfortunate aspect of my treatment for depression was that I came to the attention of the neurology department. At that time, several new drugs became available to treat CP muscle tension and the professor convinced me to try them. Several weeks later, I began having problems keeping up with my academic work and staying awake in class. I made no connection between my academic problems and my medication and struggled along for perhaps a year, barely getting my work completed and always being exhausted. Sadly, he kept me on those drugs for a whole year.
Fortunately, the next December, I had stayed on campus over Christmas to study and came down with pneumonia. I say fortunately, because my cousin, who was a physician in Madison, came to check on me. He saw the filthy living conditions in the co-op where I lived and convinced me to return home to Texas. He, in fact, spent 2 hours cleaning with a torn UW tee-shirt all the dirty dishes that the 18 of us had allowed to accumulate in the main sink of our co-op over Christmas vacation. Back in Texas, Mom helped me regain my health in a much cleaner environment. Now the other fortunate thing about my return to Texas was that Mom noticed how much medicine I was taking. She suspected that the medication was causing my academic problems. I saw a local physician right away who took me off everything but Elavil and many of my academic problems disappeared. (Elavil made graduate school more difficult, but not impossible.)
In June 1970, I made a trip around the Midwest gathering data for my dissertation. On the way back, I changed airplanes by myself in Chicago and I carried what
seemed like a big box of data between airplanes. In the process I must have put pressure on that slowly deteriorating right hip because I arrived in Madison with pain going down that leg. The leg was healing slowly, when the previous year’s decision to follow my physical therapist’s advice and switch from a golf cart to a tricycle came back to haunt me. I woke up one morning that week with terrible cramping in my shoulder. Over the next several weeks, the cramping in my shoulder and the pain in my leg aggravated each other. I was in such pain that I was hospitalized for a week. Because it was a University hospital, they examined me for everything from diabetes to ingrown toe nails. I remember because the student physician who was testing my blood had to stab me eight times before he found a vein. In the end, they couldn’t make a diagnosis so they attributed my pain to cerebral palsy.
By July, the pain was worse so I visited friends first in Missouri and then in El Paso hoping that a vacation would heal me. Unfortunately, the leg spasm got worse although my shoulder healed. Apparently, all that pressure on my hip put similar pressure on my spine and a disk swelled in my back causing sciatica. My guardian angel must have been high on pot because I again returned to my El Paso neurologist, who again recommended high doses of Valium. Also, he had me struggle despite my pain to see a speech pathologist. I still don’t know what my leg pain had to do with talking. The Valium dosage was so high that my bladder could not contract and I could not urinate.
I went to the emergency room and was hospitalized. Unfortunately, the emergency room doctor decided that it was likely that my swollen disk was causing the bladder malfunction. He ordered a myliogram which involved injecting dye into my spine to determine how damaged my disk was. Unfortunately, in my particular case of CP, that procedure caused muscle spasms throughout my body, which took months to subside. The surgeon was about to remove my disk when my guardian angel must have awoken because the surgeon had the sense to call an urologist, who did a test which showed that the swollen disk was not causing the urine stoppage. Had that disk been removed, I might never have recovered.
My parents took me home to California where I spent nine months learning to walk again. I arrived in California extremely medicated so that I could not have finished my dissertation if my life depended upon it. My guardian angel got me to a physical medicine doctor, who found drugs to control my spasm and still allow me to think. He even suggested that I change anti-depressants but apparently, the paranoia caused by the Elivil made me too frightened to change anti-depressants.
Adulthood and Aging
No medical mistakes were made for a few years so I had the opportunity to complete the Ph. D. and to get a job. It was on that job as a social worker in an institution for people with developmental disabilities that problems with depression led to drug changes which caused problems with my hip. Such institutions are depressing places and in my search to combat that atmosphere, I joined a lay counseling group called “Reevaluation Counseling”. Again, my guardian angel must have been asleep as I followed what I understood to be the group’s belief that people should not take medication. I was off all medications for a month. Because of the depression, I almost lost my job. In the end, the absence of medication caused extreme muscle spasms and deterioration of my walking. After I went back on medication, I was able to regain my walking ability, although it was a year before I could give up my walker and go back to a cane. During that crisis in 1975, I began to use a power wheelchair on the job.
I did well for the next few years until I was promoted to a better job in Sacramento. I was concerned about making a good impression at work, so I used my power wheelchair full-time so that colleagues would not see my awkward gait. That lack of exercise caused my walking to deteriorate and more muscle spasms to develop around my right hip. As you can well imagine, I was fed up with all the mistakes of traditional doctors and made the mistake of going to a chiropractor, who was against the use of medication. Again, I did without most of my drugs, but I had the sense to stay on my Elivil. I never did recover from that last experience of medication enough to use a cane again. Fortunately, I changed from Elivil to another anti-depressant about that time, and much of my cognition returned.
During the 1980s as my spasticity increased because of the hip deterioration and my neurologist kept trying different anti-spasticity drugs which again almost cost me my job as a crime statistician given their cognitive side effects. By 1985, we discovered that much of my spasticity and resulting pain could be controlled by aspirin. I remained on an extremely high dosage of aspirin for several years. By then my hip had deteriorated enough to necessitate a hip fusion by an orthopedic surgeon in 1989. It would have been better if my neurologist had referred me to a surgeon immediately rather than spending two years doing tests to determine what brain changes were causing the hip deterioration. The fusion was successful and since then I have been generally well.
or almost 20 years, I have been free of leg pain. Now, at 66, I face new challenges from sleep apnea because of the difficulty treating that disease in CP. Again, I find no medical literature on the topic and my physicians turn to me for advice on how best to treat me. These troubles reminded me to document my problems with leg pain and depression and the physician errors that accompanied them so that other people with cerebral palsy who have difficulty getting good medical care can read of them and not feel alone. If you have CP and have similar problems, please contact me if I can be of assistance. My email address is: drsts@comcast.net.
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