Introduction
Srulyosef(AT)aol.com
Sun, 20 Oct 1996 11:24:44 -0400
I am Pauline Habib. On Sunday, July 29, 1994 at 5:30 PM, I contracted Accute
Transverse Myelitis. I had just taken a shower, and while getting dressed,
fell down on the floor in terrible pain - in my lower back. I went to the
hospital in an ambulance. I spent a week in the hospital under the care of a
neurologist. I was put on heavy doses of steroids which lasted for about a
month. I was given a spinal tap, MRI, CAT scan and too many blood tests --
they went through the process of eliminating all of the auto-immune disorders
over the course of the week. The good news was that I had no auto-immune
disorders - the bad news was tm. It was explained to us then that tm is not
a disease, but the description of symptoms. I had experienced mild flu
symptoms approximately 2 weeks preceeding my episode. The neurologist
theorizes that the cause was viral -- but it remains theory. The damage was
done on level T12. For the first week, I was totally paralyzed from the
waist down. I was unable to even move my toes. I had and have always had
some feeling in the effected areas. What has returned in the way of mobility
has been more on my left side than my right -- and that is the case even
today. I had to be catheterized for the first month, but was able to get
onto a maintanece program, which is where I am today -- not total control but
maintenance.
After a week, I was moved to Dodd Hall, the rehab clinic at The Ohio State
University. I was there for about six weeks. Then after I came home, I
continued physical therapy three times a week. I continue PT, when I notice
any improvement and I am looking to maximize those gains. I had an MRI one
year after the episode and we were told that the inflammation was gone.
Again, an MRI after two years. All that is left is the lesion -- and all of
the accompanying problems. We have been told that the likelihood of any
recurrence is very very small -- about 1%. And that it is also unlikely that
this condition will lead to any other condition. This is it -- we have been
told that this is likely most of my recovery, and the rest depends on
maximizing what has returned since the healing in my spine. The scar tissue
remains. I have partial sensation in my lower body; I do not feel hot or
cold, but I do feel pressure and pain.
One of the most difficult aspects of the injury has been the pain. I have
had the pain from the beginning. It is a burning sensation and it increases
after I have been sitting for a few minutes -- I cannot sit for very long. I
am on 800 mg of tegritol during the day at night 50 mg of amitriptaline.
These are both for pain. The amitriptaline also helps me to sleep and helps
to close my sphyncter muscles which helps bladder control at night. Tegritol
is an anti-seizure medication and amitriptaline is an anti-depressant. I
have also taken ditripan (baldder control). The neurologist also has me
taking vitamin B supplements -- it is supposed to help with nerve damage. I
am taking calcium supplements because I have been losing bone density in my
pelvis. I was told that the loss of density could be from the lack of use
and a possible side-effect of the steroids. I also suffer from fatigue. The
pharmacist has told me that it could be a side effect from the tegritol.
Maybe we should all share our medications to find out if our fatigue is
medicine-related and not tm??
I am under the care of a physical medical doctor, a neurologist and physical
therapist. The neurologist handles medicines and the pain issues, and the
physical medicine doctor handles more of the mobility issues. My first sign
of any movement was on the 10th day after my episode. I was in a wheelchair
for six months. Then went to a walker. I use canes for walking only when I
am out of my house or out of my classroom. I have been to an experimental
gait clinic at OSU -- they have recommended an AFO for my right leg. I have
used an E-stem unit in the past. I had a left foot peddal put in my car and
I am certified to drive this way.
I am a kindergarten teacher in Columbus, Ohio. I have 2 half-day classes. I
am 37 years old. I went back to work full time about six months after my
episode. I had no choice, because of my health insurance. At the time I did
not qualify for disability and would have had to totally quit to get social
security. It has been very difficult, but has worked out. I have received
tremendous help from the Ohio Bureau of Rehabilitation Services. They have
helped pay for transportation, PT, adaptive equipment, hospital bills, and a
membership at a health club that I use for weight and pool exercises. If you
have these agencies in your states or countries -- check them out.
I am Sandy (Sanford) Siegel -- 45 years old. Pauline has been THE very
special person in my life for nine years. She is a remarkable person who has
taught me a lot about living and now teaches 50 kindergarteners every year
some wonderful lessons about disABILITY. I am a cultural anthropologist. We
are very grateful to Jim for leading us to the tmic and for offering us the
opportunity to share with all of you.
We have been reading the notes for the past couple of days and have been
really moved by the stories. Many echoes of our experiences. Much
confusion. So much anxiety.
About a year ago, NORD sent us to Deanne Gilmur. Deanne's 18 month old
daughter (now about 7) contracted tm. Deanne was starting a transverse
myelitis association. I offered to assist Deanne, and we are now attempting
to get the tma off the ground. (Joan, you mentioned in one of your notes
that you were working with Deanne. Let me know if there are anything
projects I can help you with -- I'll do what I can). I am currently putting
together our newsletter, and hope to have it mailed out in the near future.
Deanne does not have a computer, so she and I do all of our communicating
over the phone. We are doing a newsletter, because we know there are many
people that do not have access to the internet/on-line services. Jim and I
are also going to explore the possibility of posting the newsletter and other
tma information on the web. We'll keep you posted. Other activities of tma:
Deanne and I are putting together a membership directory. Membership
consists of contacting she or I and you are a member. If you are interested,
please send me your name, address, phone number, e-mail address, and I will
get you in our data base for receipt of the newsletter and any other
information we send out. We are also putting together a survey that will go
out in the newsletter. The survey will solicit perspectives from people
regarding the activities they would like to see tma take on. We are also
going to begin a systematic process for collecting demographic and
experiential information about our members. As we are all aware, there is
little published information out there regarding who has this, when they got
it, what other physical problems resulted, what kinds of doctors are treating
them, what medications are they taking and for what symptoms, what kinds of
physical therapy are people using, what alternative treatments are worth
considering? And on and on. I am certain that doctors would be as interested
in this information as we will be. If you have some ideas about specific
information you would like us to collect, please let me know and I will build
it into the questionnaire. We will protect the anonymity of all people who
provide this information -- we will provide statistics and text -- no
identities. We are also in the process of trying to become a non-profit
organization and are considering incorporation. We are looking for an
attorney who specializes in corporate law to help us fill out the paper work
for the IRS and to assist us with advice. We are looking for a free lawyer
-- rare concept -- right along with the humble doctor. Finally, we have
people who have sent us letters about their experiences - much like what this
club has been doing. We will begin to publish those so that people can share
their experiences. Makes you realize how fortunate we are to have this club
on the net -- it will take us so much longer to share this information with
people through a newsletter.
Sorry for the very long note. After reading all of your notes over the past
few months, you gave us so much to talk about.
If you know of a competent, generous corporate lawyer with a strong social
conscious, please ask him to get in touch with me. (Is there a Jim in our
club who is an attorney -- help) I am certain there are many talents
represented in this group. If you are interested in helping out in some way,
please let me know. We can use help. Thanks.
We look forward to hearing from you. Take care and be well.
Pauline and Sandy