This article was originally published in North County News.
The line stretched around the open door into the lobby. Our formation must have caused quite a stir to the uninformed observer. One young woman from Seattle sported a wheelchair much like mine, although she’d been in it over 20 years. The older gentleman behind me had an electric model. A child under the age of 10 screeched up at the end of the line, leaving skid marks and scant smiles with his animated antics.
We waited for the freight elevator to take us to the rooftop reception that preceded the closing banquet festivities. For four days, I journeyed from my Phoenix home joining others from all over the world to attend the Hopkins-sponsored symposium on Transverse Myelitis, the cause of my paralysis.
Although considered rare with an incidence of 1 in 1.34 million, Transverse Myelitis (TM) has close cousins that are far more familiar:
Multiple Sclerosis, Lupus, Alzheimer’s and even ALS (Lou Gehrig’s disease). Considered an inflammation of the spinal cord with an etiology often unknown, TM sometimes occurs after a flu-like illness, vaccinations, or totally independent of either. Its onset can be rapid or spread out over several weeks.
In my case, I went to bed with the flu and woke up with shooting pains in my legs. Six hours later, I was paralyzed from the waist down.
One third of TM’ers recover fully. One third recover some. One third have no recovery. Although determined not to be in the latter category forever, after four years with no significant return of function, I have adjusted to life from the wheelchair – for the moment.
The symposium offered an opportunity for me to meet others with TM. From Belgium to Australia, scientists, clinicians and patients came to Baltimore to learn more about the latest progress in both research and management of this debilitating disease.
Cody Unser, race car driver Al Unser’s daughter, energized the group as she sped in and out of sessions in her purple-sparkled wheelchair.
Paralyzed by TM at the age of 12, she and her mother, Shelly, founded The Cody Unser First Step Foundation. Determined to foster communication between research centers and patients, the foundation helped sponsor the event.
Dr. Douglas Kerr, the symposium director, hosted the event that included major research presentations from The Mayo Clinic, The Miami Project for Paralysis and his own research at Hopkins’ Transverse Myelopathy Center.
The success in spinal cord nerve regeneration was astounding.
Dr. Kerr’s words still spin vividly in my mind. In his laboratory, paralyzed mice treated with stem cells showed significant recovery. We watched his video verify his progress as he crisply explained the origins of the stem cells. “These stem cells came from a single source obtained in the mid-80s,” he began. “All research to date as been from this one source. We will be able to create 500,000 interventions from these cells.”
The mental warfare began for me _ 500,000 interventions? From a single source 15 years ago? Amazing. But questions crept into my mind as my fears began to stir about that single source. But 500,000 interventions?
The evening’s concluding banquet featured several TM’ers telling their stories. Although shocking to learn of the onset of TM for adults, the raw pain exuded from parents as they retold their tale of horror, watching TM paralyze their children, was far more disturbing. Quadriplegic infants. Paraplegic toddlers. How does one begin to plan for that kind of life?
Hope has to be the operative word. Not only for those with TM, but with MS, and ALS, Lupus, Alzheimer’s, Parkinson’s and other nerve-related disorders.
One single source, 500,000 interventions. Surely there is a way to balance our hopes with our fears.
Surely there is a way to balance our hopes with our fears.