We are pleased and proud to bring you the inaugural issue
of the Transverse Myelitis Association Newsletter
A Letter from Deanne Gilmur,
President and Founder of the Transverse Myelitis Association
My best to all readers interested in the Transverse Myelitis Association.
As you undoubtedly recognize, this is TMA's first newsletter. How
frequently newsletters are written and distributed are as yet uncertain;
much will depend on your input and our editor's patience. Our editor is
Sandy Siegel, who has become a partner in the development of this
organization. Together we hope that this newsletter will provide a sense of
support and cohesiveness, ideas for coping mechanisms, and information
regarding resources and related research. To date the TMA has been providing
a database of members, a partial bibliography, research information, and
phone support. TMA is continuing to build the database of members and act as
a clearinghouse of articles and information. There is a long way to go to
perfect this first phase of TMA's development, but progress is being made.
With your support and approval, I have drafted the following short and long
term goals for the Transverse Myelitis Association:
Short Term:
1) To continue to build a database of members for mutual networking and
support.
2) To continue to locate relevant articles and information for distribution
to members.
3) To develop and circulate a newsletter at least twice annually for the
purpose of communication and information sharing.
4) To complete the process of establishing the TMA as a legal non-profit,
tax-exempt organization.
5) To develop a professional TMA brochure.
Long Term:
1) To gather statistics from our membership for eventual research purposes.
2) To investigate the potential of interaction with larger related
organizations.
3) To investigate and fund appropriate research.
4) To maximize opportunities for interactions and gatherings amongst
members.
As formal as the above may sound, the overall goal is to establish a sound
organization that offers people support, answers, and hope that we're all in
need of when confronted with this diagnosis. Please contact me if you have
suggestions or input regarding the goals. It has been such a privilege to
talk to so many of you; I have been moved by the courage and effort that
you have expressed. It is my greatest hope that this Association will
assist in the healing of both those with the diagnosis as well as their
family members.
Sincerely,
Deanne Gilmur
TMA Founder
Deanne Gilmur has moved. Please note the TMA's change of address:
Transverse Myelitis Association
c/o Deanne Gilmur
3548 Tacoma Place West
University Place, WA 98466
Deanne's phone number remains:
206-565-8156
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From the Editor
By Sanford J. Siegel
On July 29, 1994 Pauline fell to the floor with an excruciating pain in her
lower back. We rushed her to a hospital and within a week she was diagnosed
with acute transverse myelitis. As most of you are so aware, what followed
were months and months of tests, therapy and questions. So many questions
and so few answers. The doctors, nurses and therapists offered answers that
were, at best, ambiguous and difficult to understand. When seeking answers
as to cause, we were offered only theories, and then only with some
reluctance. And as to any future potential risks, various probability
statistics were recited -- and recited without much reassurance or
conviction. What has remained is so much confusion about cause, about
relationships to the auto-immune disorders, about treatment, therapies and
medications, and about future quality of life and health risks. These were
very lonely and frustrating times. Neither of us knew anyone with
transverse myelitis nor had even heard of transverse myelitis.
Pauline has been THE very special person in my life for nine years. Pauline
is a kindergarten teacher and I am a cultural anthropologist. She is a
truly remarkable person who has taught me much about life and is now
teaching fifty kindergartners every year the meaning of disABILITY. We live
in Columbus, Ohio.
We began to search for answers about transverse myelitis. That search
brought us to Deanne Gilmur from Tacoma, Washington. Deanne's daughter was
diagnosed with transverse myelitis when she was eighteen months old. Deanne
started the Transverse Myelitis Association in 1994. We were put in touch
with Deanne through the National Organization of Rare Disorders. When I
reached Deanne, I offered to assist her and TMA in any way I could. It is
through that offer that Deanne asked me to be the editor of your TMA
Newsletter.
We are very pleased to bring you the first publication of the TMA
Newsletter. We hope that you find it informative and useful in your own
search for answers. At the very least, we hope that it helps you to
understand that you are not alone. We need to be there for each other --
and we will be.
We want to hear from you. If you have any comments about the newsletter,
including information that you would like to have covered in future issues,
please let us know. If you would like to submit an article for future
publications, or are interested in writing an article for the IN THEIR OWN
WORDS column, we would greatly appreciate your contributions. Please send
all of your correspondence regarding the newsletter to the address I have
provided below. You may also send me material over the internet.
Over the past year, Deanne conducted the first mailing to people who had
made contact with her through a reference from NORD. We were sent various
medical articles regarding transverse myelitis, as well as a directory of
individuals who had been in contact with Deanne. She has also mailed a
survey to solicit perspectives on what the TMA should be for its members --
what services should be offered and what activities should be pursued. She
has been in personal contact with many of us. Deanne's efforts at
initiating the TMA, disseminating information about transverse myelitis and
encouraging and structuring a social network for offering emotional support
have been outstanding. As we publish our first newsletter of the Transverse
Myelitis Association, I wanted to take the opportunity to thank Deanne for
her leadership, her kindness and generosity, and her perseverance -- we are
all the benefactors of her hard work and dedication to the Association.
Thank you, Deanne.
Sanford Sandy J. Siegel
1787 Sutter Parkway
Powell, Ohio 43065
(614) 766-1806
e-mail: srulyosef(AT)AOL.com
---------
Jim Lubin: An Inspiration and a Wealth of Information on the Internet
By Sanford J. Siegel
My name is Jim Lubin. I was diagnosed with acute transverse
myelitis in 1989. I woke up the morning of May 17th with a sore
neck on my right side. I thought I had just slept wrong, took a
couple of Tylenol and went to work. About an hour later, I started
feeling dizzy and the pain in my right shoulder increased. I lost
feeling in my legs and couldn't stand. I started loosing my breath
just as the paramedics got there. That is the last thing I remember
until I woke up in ICU; I couldn't move and couldn't speak. To
make a long story short, I had a MRI several weeks later which
showed a lesion at the C1/C2 level.
I'm still paralyzed from the neck down and completely dependent on a
ventilator to breathe. I can now feel everything except my right
arm and have less feeling on my whole right side.
Jim posted this message on August 18, 1996 on the Transverse Myelitis
Internet Club (TMIC). Jim started the club to provide a forum for people
with transverse myelitis and their families and friends to exchange
information, offer emotional support and share perspectives on their
experiences. For those of us who have access to the Internet and have been
searching for information on transverse myelitis, Jim has become an
inspiration and a source of a great deal of valuable information about
transverse myelitis and about disability.
In addition to the TMIC, Jim has developed and maintains an Internet site he
has named the disABILITY Information and Resources page. He has constructed
the site with numerous links to disability topics all over the Internet.
The site has compiled links to such topics as disability-related products
and services, spinal cord injury resources, government and legislative
information, social security information, legal information on disability
issues, medical related newsletters and publications, medical newsgroups,
disabilities organizations, disability resources relating to recreation,
travel, sports training and athletic competition, university-based
disability information, and information pertaining to the Americans with
Disabilities Act. Jim has also compiled links to information about
transverse myelitis. The disABILITY Information and Resources page includes
the equivalent of five pages of links which literally transport an
information seeker all over the Internet.
Jim's experience and expertise with computers and software are quite obvious
and impressive from what he has accomplished on the Internet. What is less
obvious and more remarkable is how Jim performs these tasks.
Jim's computer activities and his work on the Internet were the subject of a
journal article in a health publication. Anne Federwisch, OTR, wrote an
article about Jim in Nursing & Allied Healthweek entitled, "Computer
becomes therapy, link to world for patient." (URL
http://www.healthweek.com, article posted 11-6-95). The following excerpt
from Ms. Federwisch's article explains how Jim is able to use his computer:
From August 1989 through January 1990 Lubin was in rehabilitation at
the University of Washington Medical Center in Seattle.
"Rehabilitation was kind of boring most of the time because I was a
C2 quad -- I couldn't do much," he said.
Lubin said therapy grew more interesting once he gained access to a
computer. His regular occupational therapist called in Denis Anson,
MS, OTR, a computer access specialist and lecturer in the division
of occupational therapy in the University of Washington's department
of rehabilitation medicine, to determine the best way for Lubin to
use the computer.
Anson taught Lubin how to use Morse code with a sip-and-puff
interface. Lubin gently inhales and exhales (sips and puffs) into an
air switch connected to a computer. An adaptive device translates
each sip into a dot in Morse code and each puff into a dash. The
dots and dashes are translated into commands and letters on the
computer screen.
Lubin mastered Morse code and the sip-and-puff technique in less
than a month. A special valve (a Passy Muir tracheostomy speaking
valve) lets air go into his trach but blocks it from going out
allowing him to speak and to sip and puff while on the respirator.
"That way I have to exhale through my mouth and/or nose. Also I
can hold my breath this way," Lubin said.
Lubin said that only a little air is needed to activate the
sip-and-puff switches. "It's more just moving my tongue to change
the pressure in my mouth. I just do very fast sips and puffs. I
keep exhaling through my nose while I am typing."
Lubin now uses the sip-and-puff technique at home on his computer to
access the Internet. Using an adaptive device called Adap2U, made
by AdapTek Interface in Mercer Island, Wash., Lubin sips and puffs
into an air switch to type into the computer.
Using the technique Lubin now can type 17 words a minute.
There is a photograph of Jim and his adaptive device and computer on his
homepage <http://www.eskimo.com/~jlubin>. You may access Jim's disABILITY
Information and Resources at <http://www.eskimo.com/~jlubin/ disabled/>.
If you are interested in joining the Transverse Myelitis Internet Club, send
a message to "tmic-list-request(AT)eskimo.com" with the subject "subscribe."
You will be placed on the list and will receive all of the messages that are
posted by any member of the group. Once you have subscribed, you may
introduce yourself to the group by posting your own message. This can be
accomplished by sending a message to: "tmic-list(AT)eskimo.com".
Jim has established an archive for all of the messages that have been sent
in the TMIC. This may be accessed at
<http://www.eskimo.com/~jlubin/disabled/tmic>. The archive allows you to
search the material by date, subject or author. Regardless of when you join
the TMIC, you can catch up on all of the exchanges that have taken place
since the TMIC's initiation, as well as share all of the valuable
information that has been posted by the participants. It is a unique and
valuable way to learn from people who have shared many of your own
experiences.
Jim has graciously offered to assist the Transverse Myelitis Association by
establishing a presence on the Internet. We are in the process of
preparing materials that Jim will develop into a homepage on American
On-Line. This site will be available to anyone with access to the Internet.
Jim will be maintaining the site for TMA. We will provide you with an
address for this site in the next newsletter and through the TMIC. The TMA
homepage will assist us in reaching more people with transverse myelitis,
and their families and loved ones. We are very excited and grateful to have
Jim's considerable talents be made available to TMA.
Jim lives in Bothell, Washington. If you would like to send Jim e-mail, he
can be reached at: jlubin(AT)eskimo.com.
---------
You can reach TMA on the Internet.
You can send us information, submit stories and articles for the newsletter,
contribute your articles for the In Their Own Words column, and refer new
members to TMA by using the Internet. srulyosef(AT)AOL.com
---------
In Their Own Words
In each issue of the newsletter we will bring you a column which presents
the experiences of our members. Their stories are presented In Their Own
Words by way of letters they have sent us. We are most appreciative of
their willingness to share their very personal stories. It is our hope
that through the sharing of these experiences, we will all learn something
about each other and about ourselves. It is also our hope that the stories
will help us all realize that we are not alone.
Betty Rovenstine
Witchita, Kansas
My name is Betty Rovenstine and I live in Wichita, Kansas. My transverse
myelitis came about on September 27, 1989. It started around 8:30 AM
with numbness in my feet and legs. By the time we arrived at the Minor
Emergency Center I was unable to stand. I went in an ambulance to the
hospital where I had many tests -- MRI, Cat Scan, etc. - and was
diagnosed as having transverse myelitis, which is inflammation of the
spinal cord going across, opposed to up and down. I am still on pain
medication, Darvacet - 100 for back pain. I believe other than the pain,
the thing that bothers me the most is the paralysis in my legs, feet, and
all my lower body, and the leg nerves because of the myelin (nerve
cushion) being stripped from the nerves. I have a prescription which
helps somewhat, but not entirely.
The prescription medicine is generic Elavil (Amitriptyline). I can only
take it at bedtime because of the side effect of drowsiness. I was in
the hospital five weeks with therapy twice daily, but I still couldn't
stand on my feet until I began out-patient therapy. My therapist then
taught me to stand alone and to walk again. She stood me between the
parallel bars and guided my feet with hers as she sat on a stool and
rolled backwards, keeping my feet apart since they wanted to hug one
another. I can walk with my walker to and from the car with my husband
just behind me, or I would probably fall. I was warned by the therapist
not to try it alone.
My bladder and bowels do not function on their own. We catheterize four
times a day, the last one done at 10:45 so it lasts all night. We must
wait until a B.M. works on down and help eliminate it, which is painful
but necessary.
I had forty-six chiropractic treatments, but it did not help. It only
aggravated the condition. I have normal use of my arms and hands for
which I am grateful.
I cook, wash dishes, dust, and anything I can do, but my husband vacuums,
grocery shops, does the laundry and all the everyday things I am unable
to do. He also gardens, plants flowers and does all the outside work on
this half acre. We're grateful also that this all waited until he
retired from Boeing Aircraft, after forty-one years. I am seventy-two
and he seventy-seven. I thank G-d for him every day. In 1979 he had a
heart attack and one year later he had surgery with five by-passes and
has had regular and good check-ups since the surgery sixteen years later;
and I feel that I am a very lucky lady to still have him.
I didn't realize before I heard from NORD, the National Organization of
Rare Disorders, that TM was so widespread. I live in my wheelchair and
am up in it all morning and until our noon meal at 1:30 or 2:00 PM and by
then I am more than ready to go to bed for the remainder of the day and
evening until bedtime. I hope my article will be of help to someone who
is unfortunate enough to endure TM.
Betty Rovenstine
----
Dale Green
Paisley, Oregon
My name is Dale Green. I am 58 years old and I have transverse myelitis.
It all started on the night of October 10, 1994. My left arm started to
go numb. Then by the next morning I couldn't move from my chest down. I
could shrug my shoulders and turn my head is all. I had feeling in the
left side of my body, but not the right.
I spent seven days in C.C.U. in Bend, Oregon then another two weeks
there. By the time I left Bend I could move my right hand some and lift
my right arm a little. I could move my left hand some and my toes.
After Bend I got moved to rehab in Eugene, Oregon. There I got so I
could stand in a standing frame and do some bridging. I also got to
where I could feed myself. I got an electric wheel chair with a tilt. I
spent six weeks there then I went to a nursing home in Redmond, Oregon
where I spent the next seven months getting therapy. I went back to Bend
Rehab for three weeks for more therapy before I moved back home.
I have been home now for almost one year. The pain I deal with is neck,
bladder, and butt pain because the chair I have now does not tilt so I
tend to sit too long. I take pain pills. I live six miles from a hot
mineral pool so I tried getting in it to exercise. I really enjoyed it.
The part of my spine that was effected was up in my neck. In Eugene one
doctor said he could try to help by doing surgery to repair the nerves,
but two other doctors said that they wouldn't recommend it.
Dale Green
---------
A Work In Progress...
By Deanne Gilmur and Sandy Siegel
It has been a very busy and gratifying year working to establish the
Transverse Myelitis Association. There is so much work to be done. There
are a number of on-going activities that we wanted to describe for you.
First, it is a pleasure to report that the TMA is now an official non-profit
organization. Articles of Incorporation as a non-profit organization have
been filed in the State of Washington. The next most important activity is
to formally file for tax-exempt status with the IRS. The appropriate
paperwork is in process to become an organization with tax-exempt status
under Section 501(C)(3) of the IRS tax code. It is important to keep in
mind that until this process is completed, any contributions to TMA are not
tax deductible. When we have completed this process, we will inform the
membership of the Association's tax-exempt status.
We are in the process of developing a membership directory for TMA. One of
our major goals is to create a network where we can find information and
support from others who share our experiences. The directory will serve as
one means with which to accomplish this goal. The directory may also help
us find people in our own and neighboring communities where we can begin to
initiate more local support networks. We will also include e-mail addresses
in the directory. The directory will help the TMA to keep track of its
membership and the members to keep track of each other. We ask that you
keep us informed of any changes in your addresses or telephone numbers. Our
hope is to have the directory published and distributed early in 1997.
We are also developing a process for the systematic collection of
information about our members. Perhaps one of the most frustrating aspects
of transverse myelitis is the scarcity of information about transverse
myelitis and the people who have it. Given the very small incidence of
transverse myelitis, there appears to be little research being performed on
tm. We believe that one of the important functions of TMA can be the
collection and dissemination of information about tm. We are going to begin
collecting demographic, medical and experiential information in a survey
that is included in this newsletter. Be assured that this information will
never be released in association with your name. We will protect the
anonymity of the survey respondents. Our goal is to provide information to
assist our members and to offer information to the medical community that
will ultimately help our members in understanding and coping with transverse
myelitis. As we begin to compile and analyze the database, we will share
this information with you in our newsletter. This process will serve to
provide all of us with a broader and deeper understanding of our own
circumstances.
Another important activity of TMA is the continued updating of the
bibliography and library of transverse myelitis research publications. We
have begun the compilation of journal articles. A mailing was prepared
earlier in the year that contained some of these articles. In your own
research, you are going to find additional research articles and
publications. We would appreciate any information you can share with us to
expand our bibliography. We will complete a bibliography in the near future
that will be mailed to each of you for your explorations about tm. We will
continually update the bibliography with our own searches, and with the
material that all of you share with us.
A final immediate activity is the preparation of a brochure that we can use
to describe the Transverse Myelitis Association. We will send copies of
this publication to NORD for the purpose of referring transverse myelitis
patients to our organization. If you found us through some other means
besides NORD and the Transverse Myelitis Internet Club/Jim Lubin's
DisABILITY Information and Resources, we would be very interested in that
information. Additionally, if there are others who should receive a copy of
our brochure for the purpose of referral, please let us know.
We want to fashion the goals and activities of TMA to serve the needs of our
members. We will continue to survey our members to seek your opinions.
Please help us to help you. If you are searching for specific information
on a subject, let us know, and we will communicate your need for that
information; there are others in our membership who may be able to help
you. If there are particular activities you would be interested in TMA
engaging in or sponsoring, please make your opinions known to us. We are
helping to provide the materials for this work in progress. Its design is
up to you. These are the current TMA officers and positions. As the
Association grows and develops, additional positions will be filled. Vacant
positions at this time are vice-president and secretary. Please contact
Deanne Gilmur if you are interested in either position. All TMA positions
are volunteer.
The Transverse Myelitis Association is in its infancy. There is much work
to be done to ensure that the goals and activities of the TMA meet the needs
and desires of our members. There are also many important decisions to be
made about how we will be structured and how we will function as an
organization. It became obvious to us that we were going to need to
establish a long-term relationship with an attorney who would be able to
volunteer their assistance in helping TMA file for tax-exempt status, and
would be able to provide us with legal advice, as necessary, in the future.
Our search for legal assistance has occupied some considerable time and
energy over the past six months. While the TMA possesses lofty goals, our
financial situation is much closer to earth. Our search included bar
associations and university law clinics. And we were not meeting with much
success. In October, we posted a message in the Transverse Myelitis
Internet Club asking for the assistance of an attorney. We received a
response from a gentleman who was a participant in the TMIC. After the
exchange of a few e-mails, Jim Fareri volunteered to assist the Transverse
Myelitis Association by providing us with any legal advice and assistance we
might require.
Jim possesses a very intimate understanding of the mission and goals of the
Transverse Myelitis Association. Jim Fareri has transverse myelitis. I
asked Jim to provide us with some information about himself and about his
experience with transverse myelitis.
---------
Jim Farreri: Legal Assistance From a Very Understanding Attorney
I was born in Pittsburgh, Pennsylvania on July 7, 1957. I went to college
at Pitt (78) and law school at Rutgers (81). I have been at the same firm
since graduation and will have practiced law for fifteen years as of October
29th. I am admitted to practice in Pennsylvania and New Jersey. I
primarily do litigation, especially plaintiff's personal injury and
employment discrimination cases. I am married and have two beautiful
daughters ages eight and six. I am currently the President of a board of
directors of a Pennsylvania not-for-profit corporation, Developmental
Educational Services, Inc., which provides educational, vocational, and
support services to developmentally disabled children and adults. I am
treasurer of my local fire company.
Last summer was when I got acute transverse myelitis. I was in good health
all of my life. On a Friday afternoon, as I was preparing to go on
vacation, I suddenly discovered I could not urinate. After three trips to
the emergency room, and the beginning of paralysis in my legs, I was
diagnosed with Gullian Barre and rushed to Thomas Jefferson Hospital in
Philadelphia. By the time I got there I was paralyzed from my sternum down
and close to needing a respirator. The doctors there diagnosed acute
transverse myelitis and gave me acute IV doses of Solumedrol. The paralysis
stopped rising. I didn't need a respirator, and was alive, so actually I
was pretty happy.
After a week on the neuro ward, I was sent to rehabilitation. I transferred
to Good Shepherd Rehabilitation Hospital in Allentown, Pennsylvania which is
to rehab hospitals what Michael Jordan is to basketball. I was discharged
in late August in my Quickie wheelchair, unable to walk, but with slight
movement and feeling in my legs. As an outpatient, they taught me how to
walk again, from braces and the parallel bars, to braces and a walker, then
just the walker, crutches, a single crutch then nothing by the first of the
year. I stopped therapy, all treatment and medicines around March. I have
not fully recovered. My legs are weak, numb, sometimes painful, and I
cannot run or walk far, or play my favorite activity of golf. I get tired
easily. Worst of all, my bowel and bladder are still screwed up; to use
the doc's lingo, "neurogenic."
Like a lot of us, these unhappy events followed a flu-like viral illness a
week before initial onset. I work full-time like I did before, but with
more difficulty. When I discussed the practice of law at Good Shepherd with
one of the nurses he told me something I'll never forget: "you don't make
legal arguments with your legs." Sometimes in life the obvious is a
revelation.
As with so many others with transverse myelitis, Jim has met the physical
and emotional challenges of his illness to return to work and to continue to
make valuable contributions to those around him in his community. We
greatly appreciate Jim's willingness to volunteer his time and effort in
furthering the goals and activities of TMA. We are both very pleased and
proud to have Jim Fareri's legal assistance.
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TMA Officers, Positions and Duties
Deanne Gilmur, Founder and President
3548 Tahoma Pl. W.
Tacoma, WA 98466
206-565-8156
* Association development
* Phone support/resource
* Membership information
Paula Lazzari, Treasurer
10105 167th Pl. NE
Redmond, WA 98052
206-883-7914
* Manages TMA finances
* Accepts donations and responds to
donors
* Prepares annual financial report
Sandy Siegel, Newsletter Editor
1787 Sutter Parkway
Powell, Ohio 43065
614-766-1806
* Coordinates Newsletter
* Manages Survey Research
Transverse Myelitis Association
TMA does not endorse any of the medications, treatments or products
reported in this newsletter. This information is intended only to keep you
informed. We strongly advise that you check any drugs or treatments
mentioned with your physician.
Jim Lubin
jlubin(AT)eskimo.com
----
Transverse Myelitis Internet Club
http://www.eskimo.com/~jlubin/disabled/tmic