Once Upon a Brain Aneurysm
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About the presenter: Brian Humphrey, is an instructor and clinical supervisor in Communication Sciences and Disorders at Nova Southeastern University in Ft. Lauderdale, Florida. He teaches a graduate course in fluency disorders, and he has published and presented research about bilingual stuttering and atypical fluency disorders. In his "other life", he plays several musical instruments in a band, and he composes tunes for traditional dancing. For several months in 2005-2006, he experienced neurogenic stuttering. |
Once Upon a Brain Aneurysm
by Brian D. Humphrey
from Florida, USA
Since 1993, I have been a program instructor and clinical supervisor in the Programs in Communication Sciences and Disorders at Nova Southeastern University. For a number of years I have taught an online course in stuttering and I have presented research papers and case studies on stuttering.
In November of 2005, while I was finishing a case study for a national presentation, I had a brain aneurysm that bled twice. I do not remember many events just before my aneurysm or for a few weeks after. For the early part of my story, I must rely on recollections and notes shared by friends and colleagues. My own memories mostly date from the last month of my hospitalization onward. As time passes, I gradually remember more and more.
What I Have Been Told
According to my colleague Fred DiCarlo, on Tuesday morning, November 15, 2005, a departmental Thanksgiving luncheon was hosted by faculty members Frank Lozada, Mary Ann Lowe, and the communication-disordered children in their classrooms. Fred recalled that at the luncheon I complained of a headache and sensitivity to light. Later in the afternoon, I reportedly telephoned Fred in a soft, sad voice and asked him to come to my office.
When Fred arrived in my office, I was nowhere to be seen. Fred heard a gasp from beneath my desk and screamed "Call 911!" When he managed to turn me face-up, I began to breathe. Colleagues Shelley Kirchenbaum and Robin Parker arrived to offer support. The emergency telephone operator offered advice until the paramedics arrived to take me to the hospital.
My friend Robert arrived at the hospital without delay. Robert and my colleague Terry Butterweck stayed with me that evening. I have been told that I was mostly alert with my eyes closed.
Because I was having trouble breathing, I was intubated (surgically fitted with a breathing tube) and placed on a ventilator. I was diagnosed with a sub-arachnoid hematoma, and surgery was scheduled for the next afternoon.
I slipped into a coma for two weeks. My friend Robert was given the choice of keeping me on life supports or removing them. He decided to keep me alive. Next, I was diagnosed with hydrocephalus; and I finally began to consistently maintain consciousness after a shunt was surgically placed to drain excess cerebrospinal fluid.
My Memories:
At some time after I awakened from my coma, I remember listening to recordings of favorite music, brought by my friend on a portable recorder. Months after my aneurysm, I realized that I was in a hospital. At first I didn't understand why.
To my consternation, I had to sleep in a "Vale bed", a sort of gentle cage designed to keep me from wandering. I remember the loneliness of watching visitors leave for the night, and the fear of not knowing when I would be freed from the Vale bed. I remember dreaming that the Vale bed and I were part of a circus sideshow for Halloween.
I discovered two big posters in my hospital room, covered with good wishes and "get well" messages from friends. One was from the monthly folk dance where I have been a musician for many years. The other was from my Quaker Meeting, my spiritual home. Reading those posters, I realized that what had happened to me must have been serious.
I remember visits from friends and colleagues; and I later realized how many people were visiting. Some visited me almost daily. I will always be thankful for those visits.
The day came when I took my first steps, soon followed by freedom from my wheelchair. My physical therapist lightheartedly called my unsteady gait a "Weeble wobble." She was referring to the old advertisements for popular little roly-poly dolls called Weebles. The old advertising jingle said: "Weebles wobble but they don't fall down."
Sometimes, Marty Spencer, a longtime musical friend, brought his fiddle to my hospital room for an evening of playing music together. At least once, Bob Murphy, another longtime music buddy, joined Marty. Marty later recalled that at the beginning of our first jam session I sounded uncertain and rusty on my mandolin, but after half an hour I sounded as good as always. Marty later told me that he could "almost see the neurons reconnecting." Another friend later suggested that perhaps the exercise of my musical skills was an important factor in my recovery. Perhaps this is true. Playing music is a deep part of my identity.
Then came a day when I went on a field trip without my wheelchair for the first time. I even helped to push someone else's wheelchair. How good it felt to be to be ordering my own lunch in a restaurant.
Transitory Stuttering
During my recovery, I went through a transitory period of neurogenic stuttering. Unlike developmental stuttering, the usual type, neurogenic stuttering results from brain injury.
At the height of my stuttering experience, I experienced several dysfluent episodes per day. I could not anticipate when I would stutter. My stuttering usually consisted of repetitions, without much strain or struggle.
My way of coping was twofold: to laugh it off, and to educate my listeners by frankly explaining my situation. I thought of it as a bit of a comedy that while I was preparing a paper on neurogenic stuttering, I was given my own neurogenic stuttering. Since stuttering is my specialty area, I consider it a gift to experience the disorder.
I found myself conducting "self-therapy", based on my experience with treating other people who stutter. My stuttering episodes were unpredictable and I often experienced long periods of fluency; so it was easier to change my way of speaking than to try to anticipate and control dysfluent episodes. I gravitated toward fluency shaping strategies: easy onset, reduced rate, and continuous phonation.
Once, after a particularly "messy" sentence with multiple dysfluencies and a bit of strain and struggle, my friend Robert said, "I just have to ask because I know that you teach a stuttering course: Was that real, or were you fooling around?"
I have been mostly free of stuttering for a few months, but not quite. I still have a dysfluent moment now and then, but others often don't notice, or else they think of it as a "normal" slip of the tongue - but it feels different to me. My "gift" is still with me.
Continued Recovery:
I remember being worried about what I would do after leaving the hospital. I didn't feel ready to go to work yet. To my relief, I was accepted at the Bridge, one of the few day programs in the country focusing on cognitive rehabilitation after brain injury. Suddenly, I was told to pack and go home from the hospital. That evening, my release was celebrated with dinner at a favorite restaurant.
Soon after my discharge from the hospital, I resumed playing with my band for monthly dances. At the dances, many dancers who had visited me in the hospital welcomed me. Playing music with my band was welcome evidence that my life could go on.
During initial testing upon admission to the Bridge, concerns were raised about my scores on some organizational and memory tests. It was suggested I might encounter difficulty at work unless my scores improved. On the other hand, Dr. Todd, the neuro-psychologist for the Bridge, suggested that I would be likely to find ways to compensate for any deficits.
After a month at the Bridge, my insurance company stopped reimbursement. My attendance at the Bridge was interrupted while the state vocational rehabilitation office was contacted to arrange for further programming.
I returned to the Bridge, this time with vocational rehabilitation goals. The counselors became more demanding as my projected time of dismissal neared. Thankfully, the higher standards were accompanied by encouragement.
I began a course of vision therapy to improve my visual perception. Over time the tasks became difficult, but for several months, I noted significant visual improvement. When I realized that I had not noted improvement in a little while, I consulted my regular optometrist and decided to discontinue vision therapy.
To simulate work experience, I was asked to design and carry out a cognitive stimulation program in a geriatric day center. When the director of the center discovered my musical skills, I was also asked to lead the participants in singing familiar "old standards". Two of the participants in my cognitive rehab program played piano and guitar. They accompanied the songs while I led the singing. Probably because I had been intubated in the hospital, my vocal range had shrunk to just a few notes, but that didn't matter. I managed to lead the singing, even though I could not sing anymore.
I started spending time at Nova Southeastern University's Clinic for Speech, Language, and Communication. Former clients sought me out to say hello. I was scheduled to consult on the treatment of some clients with stuttering problems. I began participating in online chats. I loved work experience and finding ways to be useful. In October, I was placed back on the payroll, and January found me teaching my own online section of Fluency Disorders and supervising students in the clinic.
One of the clients at the N.S.U. Clinics for Speech, Language, and Communication, who uses an electronic communication device, has long dreamed of playing keyboard. Dr. Zangari asked if I might like to teach her. In two sessions, the client learned to read a letter code to play several simple tunes. Excited by her accomplishment, she hugged me. My musical client has a continually growing symbol page so that she can talk about her new musical skills. She has performed for the children in her church on several occasions. At this writing, she has begun learning to read elements of standard musical notation.
Because of my brain injury, I was required to complete a driver rehabilitation course. Now that I am back on the road, I wish I could send a few other drivers to "driver rehabilitation."
Voice Disorder
Almost as soon as I was released from the hospital, I had noticed that my singing range, which used to be more than two octaves, had shrunk to less than half an octave. I arranged for a voice evaluation at N.S.U. with Dr. Helene Fisher and Dr. Robert Contrucci, the otolaryngologist who works with Dr. Fisher. Laryngoscopy revealed that my left vocal fold was weak and not moving as much as my right. In addition, the right vocal fold vibrated at a different frequency, resulting in diplophonia, an extra "buzz" in my voice.
My voice problem was probably due to my intubation. I have learned that intubation can often cause voice problems - a small price to pay for the preservation of life. It's good that I'm still around to need voice therapy.
In an unconscious effort to compensate for my damaged voice, I had been speaking, with a good deal of effort, at a pitch that was lower than my optimal pitch. Upon Dr. Fisher's recommendation, I obtained a belt-worn speaker and a head-worn microphone for speaking situations that required me to project my voice. After treatment sessions with Dr. Fisher, my diplophonia has gone, and my vocal range increased. I can safely increase the loudness of my voice without the belt-worn speaker, and I am continuing voice exercises on my own, checking in periodically with Dr. Fisher. My vocal range has increased to a full octave and I can sing a little bit, but I know that continuing to develop range and control will take time.
What I Have Learned:
I have learned to understand brain injury, voice disorders, and stuttering from new perspectives; and I have learned to use my experiences to help the understanding of others. I have become more forgiving of myself and of others. I have learned that my colleagues are also my friends. I am continually learning to be better organized. I have learned to integrate my experience as a brain injury survivor with being a clinician, teacher, musician, friend, and colleague.
Some Neurogenic Stuttering References
- Balasubramanian, V., Max, L., Van Borsel J.,Rayca, K.O., & Richardson, D. (2003). Acquired stuttering following right frontal and bilateral pontine lesion: a case study. Brain and Cognition, 53, 185-189
- Helm-Estabrooks, N. (1993). Stuttering associated with acquired neurological disorders. In R. Curlee (ed.), Stuttering & Related Disorders of Fluency (205-219). New York: Thieme
- Lebrun, Y. (1997). Adult-onset stuttering. In Y. Lebrun (ed.), From the brain to the mouth (105-138). Dordrecht, The Netherlands: Kluwer.
- Van Borsel, J., & Tallieu, C. (2001). Neurogenic stuttering versus developmental stuttering: An observer judgment study. Journal of Communication Disorders, 24. 385-395.
October 5, 2006
