The Newsletter of the Illinois Chapter, National Spinal Cord Injury
An Interview by Sue Kopka
Ask nearly any one who has surfed the net looking for SCI information and
they will recognize the name Jim Lubin. Jim has compiled and is the web
master of disAbility Resources and Spinal Cord Injury Resources, two of the
most comprehensive and well maintained disability sites on the Internet. I
met Jim through e-mail when he agreed to provide a link to our new web page
and very kindly added some suggestions on improving our page. At the time,
I had no idea that spinal cord injury was a very relevant topic for Jim.
Jim Lubin is a vent dependant, C-2 quad whose life was radically altered in
a matter of hours by a rare neurological disease, transverse myelitis. In a
telephone interview, Jim told me about his injury and how he came to be an
expert on disability resources on the Internet.
One morning, at the age of 22, Jim woke with a sharp pain in his shoulder.
Thinking that he had slept on it wrong, he took some tylenol and left for
the medical company where he worked. The pain was not relieved by the
medication and continued to intensify as he worked. Abruptly the pain
became extremely severe. Jim found himself becoming dizzy and he suddenly
collapsed. Co-workers called 911. It was extremely lucky for him that the
fire house was across the street from the medical company, because Jim was
dying. He coded twice, it took paramedics two hours to stabilize him,
before they could safely move him to the hospital, where he awoke to find
himself totally paralyzed and unable to breathe without a ventilator. He
remained in intensive care for two months.
At first doctors thought that he had a stroke or perhaps a heart attack
until an MRI showed the swelling around the C-2 vertebrae and the evidence
of transverse myelitis.
In rehab his enthusiasm for computing became a definite asset. Using Morse
code with a sip and puff system, Jim learned a new way to compute and can
"type" at around 19 words per minute which easily gets him around the
Internet, including chat rooms where he meets people from all over the
world. While exploring the Internet Jim has collected vast amounts of
disability information, which he has compiled into his web sites. These
sites provide links to every kind of disability related issue that you can
think of including legal, governmental, medical, and social information.
Jim helps people set up web sites as well as maintaining his own. His
personal web pages should also not be missed because of the variety of
entertaining sites listed there. You can e-mail Jim at firstname.lastname@example.org or
you can visit his web sites from these links:
Spinal Cord Injury Resources
Myelitis - The Rare Disorder
We are all well aware of the types of physical injuries that result in
paralysis, but most of us are unaware of the devastating rare disorders
that can result in sudden catastrophic spinal cord injury. One of them is
transverse myelitis the rare neurological disorder, which caused Jim Lubin
(article 1) to become a vent dependent quad in a matter of hours and which
nearly cost him his life.
Myelin is the tissue that surrounds the spinal cord. When this tissue
deteriorates or is affected by injury a swelling of the spinal cord occurs
which is called myelitis. While the cause of myelitis is not known in many
cases, it can be caused by viral infections, spinal cord injuries, immune
reactions, tumors, or insufficient blood flow through the blood vessels in
the spinal cord. It can also be a rare reaction from vaccinations for
chickenpox or measles.
Several types of myelitis may occur.
Ascending Myelitis is marked by progressive paralysis with gradual loss of
Brown-Sequard Syndrome involves lesions and spinal cord compression with
inflammation, injury, and the presence of foreign bodies.
Disseminated Myelitis results from more than one spinal cord injury.
Transverse Myelitis happens when swelling causes the obstruction of blood
vessels and loss of the fatty tissue around the nerves.
Symptoms may include pain, loss of coordination, followed by gradual
paralysis (from the site of the myelitis down the spinal cord), and other
physical complaints like bowel and bladder malfunctions. Symptoms may
appear gradually or as in Jim Lubin's case there may be no symptoms at all.
Myelitis, like other spinal cord injuries, is not predictable in its
behavior. In some cases there are varying degrees of recovery. In Jim
Lubin's case, he has recovered the feeling (sensation) throughout his body
except for his right hand and arm. He is, never the less, completely
paralyzed and vent dependent. (I mention this for new readers who many not
realize that paralysis does not necessarily mean total loss of sensation or
no pain.) For more information:
Transverse Myelitis Internet Club
Transverse Myelitis Association
A searchable archive and more TM information is available at:
Transverse Myelitis Internet Club