From the Editor for under five years, and people are We are a community so long as we
Sandy Siegel just beginning to find us. And we are communicating with each other.
are being found by people from all Communication is the life-blood of
over the world, thanks to the really our TM community;
As seems to be my style, I will wonderful work that is performed communication is how we are held
begin this column with an apology; by Jim Lubin. Our web site is being together. And that is the reason the
I am sorry that this newsletter is visited by thousands of people from newsletter, the TMIC, the directory
being sent to you much after its every state in the United States and and the conferences serve such vital
intended publication date. The from countries all over the world. functions for our Association.
original intent was to have the Our membership looks like the These are our vehicles for
newsletters published every six United Nations. communication in our community. I
months. How about if I promise to read every message that is posted on
distribute two newsletters in a Our membership is a community. the TMIC. I have observed that part
calendar year? Thank you for your We are a community represented by of our community grow and flourish
patience and understanding. a tremendous diversity of cultures over the past two years. The
and languages. We are men and community expands and contracts
In addition to the work on the women and boys and girls. We are and expands. New members
newsletter, I continue the process of of many different races and appear...frightened, confused.
entering the survey data. It is my ethnicities. We come from every Support, encouragement and
goal to have the data entered and walk of life, from every economic information begin to flow
ready to analyze within a few class, and from every religious immediately ... from Jan, Barbara,
months. Drs. Lynn and Levy are heritage. We are a community Gunny, Phil, Maureen, Sharon,
reviewing the content of the survey because we share a common interest Netta, Nora, Jo Ellen .... Bob has at
to assist us in determining areas that and concern that has become an least five or ten new pieces of
would yield good results from the integral part of all of our lives. It is medical research posted every week.
perspective of the medical a common interest that no one else Someone asks for a definition of a
community. We fervently believe understands quite like we do; that medical term; Jim offers a few links
that the survey work offers us an no one else appreciates quite like we to medical sites where you can
important tool for learning about do. None of us willingly selected spend a month reading about that
TM and for educating physicians, membership in the community, and term. The communication goes on
other health care providers and all would gladly turn in their day and night, every day... and it
ourselves. membership card if given the goes on between members of a real
option. But our membership is a community.
As is noted elsewhere in this community. A community with a
newsletter, our membership is shared history of experiences. A Deanne and I are contacted by
growing quite rapidly. We have community with a shared people all the time who are looking
more than quadrupled our numbers language ... girdling effect, AFOs, for information about doctors,
in a year and a half. If the published L’Hermittes Sign, spasticity, hospitals, and social services. We
incidence of TM, as 1 in 1.3 million, Tegratol ... I don’t often use this do not have this information,
is in the ballpark, there are language outside of this community. because it has to be dealt with on the
thousands of people in the United It is a community with a shared local level. We send everyone a
States who have this diagnosis. concern, and a shared desire to membership directory and we
Every decade there would be educate ourselves and each other, to encourage everyone to develop and
approximately 2,500 people who are support each other, to encourage nurture their local TM community.
diagnosed with TM. The each other. We are motivated to hold a
Association has been in existence conference for the Association next
summer, because we recognize what
Page 2 The Transverse Myelitis Association
that contact means for the From the President More recently, our Association took
development and cohesiveness of our Deanne Gilmur another huge step when several TMA
community. We saw what happened, members and the Board of Directors
emotionally and socially and met in Columbus, Ohio at a joint
psychologically, when a group of Sandy conference with the FOP Association
people were brought together, for Welcome TMA Members, and representatives of NORD. While
even a short period of time, who share For those of you who are new to The our numbers at the conference were
something that no one else in the Transverse Myelitis Association and small, the impact of meeting and
world shares. Pauline, Maureen, our newsletter, a recap of our history spending time with others with TM
Heather, Paula, Drema, Gunny, Phil, may be useful. In 1991 my daughter, (and their families) was one of the
Debbie, Deanne and I will never be then 18 months old, was diagnosed most moving experiences imaginable.
the same. The personal meetings with Transverse Myelitis and like so The informational resources shared,
accelerate and intensify those bonds in many others among us, our family the life-long friendships made, and the
the community. experienced many changes and losses growing ability to cope and even laugh
without much information and at our circumstances made this a
The newsletter is an important part of memorable time. It was also a time
support. In 1994, I sought to find
our community. And that is why I
others with the diagnosis through the during which we worked, worked and
opened my letter with the apology. I worked. We planned future TMA
assistance of NORD (National
recognize how important this vehicle goals, brainstormed about funding
Organization of Rare Disorders) and
for communication is for our approaches, reviewed organization by-
to develop some kind of support
community, and it is a great concern
organization. Through this process, I laws, and met with professionals from
to me when it is not offered as often as other advocacy groups, as well as
met Sandy Siegel (our newsletter
it should be to our members. The
editor & VP, and so much more), who health care providers. The Board also
communication is vital to our met with Dr. Joanne Lynn during the
also encountered this uncommon
community’s existence. Please take conference. Dr. Lynn, a neurologist at
condition when Pauline was
every opportunity to engage in this The Ohio State University, has assisted
diagnosed with TM four years ago.
communication. Send me your the Association in many important
Pauline and Sandy had received my
contributions to the newsletter. If you ways. At the meeting, she offered the
initial letter and questionnaire; the
have a computer, get involved in the Board significant direction for
survey was designed to solicit
TMIC. Use your directory to find designing approaches to communicate
information from people regarding
other people with TM in your
the services they would like to receive with and establish working
community; get in touch with them relationships with the medical and
from an association. Gratefully,
and start a local support group -- health care community. The
Sandy contacted me to offer his
formal or informal. Volunteer to be a conference offered us a tremendous
assistance after which we began the
TMA State Representative, or find
tedious process of becoming a 501(c) learning opportunity, and we are most
your State Representative, some time
(3) non-profit organization, locating a grateful to The International FOP
in the near future, and volunteer to Association, NORD, and particularly
wonderful board of directors,
help them. Come to the TMA to Sharon Neumann and Dr. Charles
developing a professional initial
conference next summer. These are
contact packet, designing a brochure, Levy, who made this conference
all ways to communicate and to foster possible and who invited the TMA to
and directly responding to questions
a more vital TM community. attend. With our Board of Directors
and concerns from people with TM
and their family members via the located all over the United States, our
I have taken the opportunity to add
telephone and e-mail. Our web site planning and organizing
editorial comments in several of the
and TMIC (Transverse Myelitis communications are all of the long-
articles. I have identified these
Internet Club) were developed and distance variety. The ability to have
comments by putting them in italics.
are maintained by Jim Lubin, the two full days of face-to-face meetings
The purpose is to provide context or to
TMA's Internet and Web Site offered the Board an invaluable
offer additional information. If you
Director. While there remains a opportunity to make progress on our
asked Pauline, she would tell you it
tremendous amount of work to be Association’s development.
comes from my inability not to have
the last word -- even in the newsletter! done, the Association has
accomplished many of the goals we One of the more exciting results of the
We hope you have had a good, safe
and healthy summer. Take good care had set for ourselves at our inception. conference was the Board’s decision to
plan a TMA conference in mid-August
of yourselves and each other.
The Transverse Myelitis Association Page 3
of 1999 in Tacoma/Seattle, posted a message on the TMIC that these new and important positions
Washington. We observed and asking that members provide her with will provide you with that opportunity.
experienced the benefits those with ideas about presentation topics. You The rewards associated with this
TM and FOP derived from their can send your topics of interest to activity are immeasurable.
participation in the conference and Paula through the TMIC.
wanted to make this opportunity The Association continues its effort to
available to all of the members in Earlier this year, I received a call look for funding. This is particularly
our Association. I am convinced from a gentleman whose 21 year old important with our membership
that each of you who attend will brother had just been diagnosed with rapidly growing and a conference
find your life positively changed TM. He was having difficulty with being planned in the near future.
and enriched by the resources the diagnosis and with staying Please be aware that funding is
shared, information learned, and so positive. I remembered a family that critical. Should you know of any
importantly, the friendships and I had spoken to months earlier who potential resources or support for the
support you will gain. We hope lived in the same area. I knew that TMA, please contact Paula Lazzeri,
that you will be able to join us in Kerry and Joan Defilippo would be our treasurer, or myself and I will send
Washington next summer. The supportive and would be willing to go you any information, such as our tax
time, energy and expense of putting the extra mile to help this young man. ID number, that would facilitate the
together a conference are I called them, explained the situation, contributions. I also wish to take this
considerable. The Association will and the Defilippo’s went immediately opportunity to thank the Claddagh
pursue this endeavor only if our to see him. Their visit, support and Foundation which recently donated
membership communicates that encouragement were a tremendous $5,000 to The Transverse Myelitis
you are interested in having us do help to him. I believe that this Association. What a generous and
so. We would require more than 30 personal contact can make a huge thoughtful gift! This foundation is one
individuals or their families to difference to any person/family going supported by friends and family
commit to attending the conference through the initial diagnosis and members of Mary Kate Callahan, a
for us to continue this process. adjustments to TM. Hence, this and child with the TM diagnosis. The
Please let us know if you plan to other similar experiences have helped Foundation is attempting to impact
attend the TMA conference by me to recognize the value of having spinal cord related conditions. Their
filling out and returning the form TMA State Representatives. The efforts have helped us meet our
we have included in this newsletter. idea is that individuals would serve as publication and mailing costs during
In addition, the Board is trying to the state contacts to the Board, would the past months. Again, a huge thank
locate funding to assist with the make contact with those diagnosed in you from the Association and all of its
expenses of putting on such a their state, and would provide support members!
conference. Without major funding in any feasible way. There are other
support, the Association will not be important functions which could be My best to all of you. And thank you
able to finance the conference. If performed by the State for your many efforts for the TMA and
anyone is aware of potential Representatives. The article in this for the support that you provide to
sources or ideas for funding (i.e., newsletter that describes the work each other. The directory is an
grants, donations, sponsorships), that Pam Ramsey is performing in effective tool for seeking others for
please contact me or Sandy. Virginia offers additional information mutual support. Please use it.
about the possible services that may
More specifics regarding the be offered on the state level. If any Until the next newsletter, take care of
conference will be forthcoming. of you are interested and would like yourselves and, if you can, please plan
We would bring in professionals to to volunteer, please contact the to attend the August 1999 TMA
make presentations on a variety of Association. You may do so by using Conference!
subjects, such as pain management, the form provided in the newsletter.
orthotics, and physical therapy. We With all of the countries we have Sincerely,
also need your input to know what members from in the Association, we Deanne Gilmur
topics you would like to have would also like to have a TMA President/Founder
addressed at the conference. You National Representative for each of
can provide us with this the countries. Many of you have
information on the form. indicated an interest in volunteering
Additionally, Paula Lazzeri has for work in the Association; we hope Introduction
Page 4 The Transverse Myelitis Association
The Process Of Adaptation To Effects Of Severe Injury And Illness human nature, or about what makes us
James A. Arnett and Denise S. Rabold do the things we do, have occupied the
minds of great thinkers throughout
We are please to present the first installment in a series of articles written by history. The fact that so much has
James A. Arnett, Ph.D. and Denise S. Rabold, Ph.D. Drs. Arnett and Rabold been written on this subject, and there
are faculty members in the Division of Rehabilitation Psychology, Department are so many different theories, should
of Physical Medicine and Rehabilitation at The Ohio State University. lead us to believe there are no simple
Rehabilitation Psychology is a specialty of psychology that serves individuals answers. There is a variety of
with disabilities as they adjust, adapt, and progress toward healthy and explanations for behavioral and
satisfying lifestyles. Psychologists working in rehabilitation use education, psychological problems; however, in
remediation, counseling, and advocacy to minimize effects of impairments due studying the process of adaptation to
to disabling medical conditions and promote wellness through optimal disabling illness, most theories fall
psychological and social functioning. Dr. Arnett has a broad base of short, because they do not account for
experience with a range of disabling conditions, and specializes in evaluation all factors affecting behavior. Most
of mental performance and adjustment issues associated with impaired brain theories of behavior and personality
function. Dr. Rabold is licensed as both a psychologist and speech-language are either incomplete or they do not
pathologist. She specializes in counseling and cognitive remediation for work, offer adequate explanation for all of
school, and community re-entry after acquired brain injury. the great variety of human behavior
we see around us. Probably the
biggest problem most theories of
including community and work re- human behavior have is that they are
We are very pleased to have this entry, relationships, sexuality, and limited only to the psyche or
opportunity to present our ideas about issues of psychological distress. psychological makeup of the
the process of adaptation to the effects Finally, although we intend to individual. While this is important,
of injury and illness. After some address specific problems related to the internal psychological makeup of
preliminary discussion, we realized Transverse Myelitis, we recognize an individual is only one part or one
this project involved many important that many of the ideas presented here factor that goes into the determination
issues, and adequate treatment would probably have utility for a broader of behavior.
probably require more than one range of disabling injury and illness.
article. The process of adjusting to, We welcome your questions, A better approach to understanding
and living with, a disabling illness is suggestions, and comments, as we human behavior is described by
complex, and to treat it fairly will prepare future articles. Trieschmann* who suggests that
require giving attention to many issues human behavior is the result of three
and concerns. Because every person interacting factors. These factors are
Part 1 Human Behavior And
is unique, it is impossible to discuss best described as an organic factor, a
Reaction To Severe Injury And
the adaptation process without person and personality factor, and an
Illness
attending to the problem of individual environmental factor. Trieschmann
differences. Analysis becomes even The process of adaptation to severe describes behavior as including health
more complicated when we consider injury and illness is complex and and rehabilitation adjustment; and she
that each unique individual also lives highly individualized. Any attempt deals mostly with adjustment and
in a unique environment, and has -- to understand this process must start adaptation in rehabilitation. The
within a range -- unique effects of a with an examination of the basics of behavior that we see in others, and the
disease. In considering these human behavior. Questions about way we ourselves behave can be
problems, we elected to begin our how humans adapt to severe injury viewed as a result of an interaction of
presentation with a general discussion and illness are really part of a larger these three factors. Put another way,
of human behavior, as applied to question about what causes human we do what we do because of: 1) what
illness, impairment, and adjustment. behavior. Before attempting a study we are physically capable of doing, 2)
We will then present ideas about the of the process of adaptation, we must our personality and our unique way of
adaptation process, and move to more take a more general look at human looking at the world, and 3) the
specific factors and problems related behavior. environment in which we find
to impairments and adaptation. We ourselves.
plan to deal with specific topics Questions about human behavior and
For the purpose of this article, we will
The Transverse Myelitis Association Page 5
define personality as a unique lesion, with resulting impairment of who greatly enjoys physical activities
complex set of attitudes, expectations, muscle function. It includes muscle and the outdoors, and one who does
beliefs, coping strategies, decision strength. It includes the basic senses not. Limited mobility could easily
rules, and behavioral style. This may plus coordination, sense of balance, represent a greater problem for one
sound complicated, but these are and tactile sense. The organic factor person than for another. Note also that
really some of the personal qualities includes how the body reacts to education and work experience often
that make each of us unique stress. It includes how much sleep play a part in adaptation to illness,
individuals. We expect these personal one needs in order to feel good. Note again because of the different physical
and personality qualities to be that medication affects body demands of various jobs. How one
relatively stable over time, including chemistry, and in a sense, changes adapts to uncertainty, uncertain
before and after onset of a major what the physical body is capable of prognosis, and course of disease is
illness. doing. Within the physical body -- especially important with TM because
without regard to personality issues - so much about the syndrome is
In studying the reaction to severe - the effects of illness and injury vary unclear.
injury and illness, it is useful to greatly. TM has a great variety of
consider Treishmann's view of human effects depending on size and Finally, let us examine the affect of
behavior. We know, for example, that location of damage. TM can affect environmental factors on behavior and
individuals react in different ways to different amounts of both gray and adjustment. Obviously, the family is
severe injury or an illness such as white matter of the spinal cord in one an environmental factor that plays a
Transverse Myelitis (TM). We know or more adjacent thoracic segments. major role in adjustment. Imagine the
that individuals are unique before the The degree and severity of the injury affects on behavior of a family that is
onset of the illness, so it should not be determines functional capability of caring, reassuring, and supportive and
surprising that reactions to illness and the body, and this physical capability a family that is withdrawn and
the process of adaptation are also affects the process of adaptation. tentative in their support. Likewise,
unique. We know that each The question, “what will I do?” is imagine the affects on behavior caused
individual finds their own way to usually followed closely by “what by a sympathetic and an
adapt to the changes brought on by can I do?” unsympathetic employer. Consider
illness and injury. Any attempt to also the possible affects on an
describe a detailed, step-by-step Next, consider the personality factor. individual of health care agencies,
process of adaptation fails because it This factor includes all the things that hospital environments, hospital staff,
does not allow for unique qualities of make us unique as individuals. We and work environments. Consider the
the disease, individual personal may be shy or outgoing, quick or differences between physically
differences, and unique environmental slow to make decisions, even and accessible buildings and those that are
factors. It is impossible to study the steady or up and down. We may be not, or only minimally accessible. The
process of adaptation without dealing liberal or conservative, or we may be reactions of friends, spouses, family
with the differences in degree of someone who doesn't want to be members, health care workers, and
injury, unique personal factors, and considered as either. When making a coworkers are all part of the
the variety of environments (life decision, we may look for all the environmental effect.
situations) among persons who are facts, make lists, and try to think
struggling with adaptation. logically, or we may prefer to use our In summary, there are many ways of
intuition or feelings. We may take adapting to the effects of a severe
We will now take a closer look at the risks or we may prefer not to. We injury or illness. It is impossible to
three factors of behavior, as they may attack a problem directly or we describe a standard process of
might apply to adaptation to TM or may prefer to avoid a direct attack. adaptation because humans do not all
illness involving significant We differ from one another in a great act the same in response to a specific
limitations of function. many ways. Of course, we differ in injury or illness. Human behavior is
how we react to change and loss. complex, and any attempt to describe
First consider the organic, or What is the individual's reaction to a the process of adaptation must account
physiological, factor. This factor serious syndrome like TM? How one for the great variety of behavior and
includes all that an individual is reacts to such a problem depends on experience. Human behavior is best
capable of doing based on organic many personal qualities. Consider described as a complex interaction of
function. Organic function would be the reactions to loss of physical physiology (what the physical body
determined by level of spinal cord ability by two different people, one can do), environment (the physical
Page 6 The Transverse Myelitis Association
environment and the support of foot spasms, especially at night? these include: flexeril, tizanidine,
others), and person and personality The neurologist told me to stretch clonazepam and valium. Use of any
(the kind of person I am, including the well before I go to bed and try to of these medications should be
ways I solve problems and manage keep legs from touching each other supervised by a physician. Often
my needs). Each individual will find in bed. I've also learned to keep neurologists and physiatrists who see
their own way of adapting to the them as warm as possible. These many patients with spinal cord injury
effects of illness. Although there is things don't work well. Any are more comfortable prescribing
no one sure way to go about it, the suggestions. these medications than other types of
process of adaptation to disability physicians.
does involve certain standard tasks, a Normally there is a balance between
review of which will make up our relaxation and excitation of muscles 2. What is cyclosporine? Why is it
next article. and this is controlled by the nervous used? What are the benefits and
system. When there is injury to the risks?
*Reference: Trieschmann, R.B. spinal cord from myelitis, there is
(1988) Spinal Cord Injuries, often a loss of this balance, with an Cyclosporine is an
Psychological, Social, and Vocational increase in muscle tone known as immunosuppressive chemical
Rehabilitation, 2nd ed. New York: spasticity. This may cause cramps produced by the fungus
Demos Publications. and spasms or, when very severe, a Tolypocladium inflatum. It suppresses
lasting stiffness causing inability to the immune system by blocking the
Joanne Lynn, MD is an Assistant put a joint through a normal range of ability of T helper cells to
Member Questions and motion. Passive stretching is an produce molecules important to the
effective way to decrease spasticity production of inflammation and tissue
Answers from Dr. Lynn
for many people and also helps to damage. T helper cells are one type of
maintain normal range of motion for white blood cells that may abnormally
joints despite weakness. A person attack human tissues in autoimmune
can learn a regimen of passive disease.
Professor of Neurology at The Ohio stretching from a physical therapist
State University. She is currently on or can consult books. People with Cyclosporine has been used to
the staff of The Ohio State University multiple sclerosis also have problems suppress the immune system in organ
Multiple Sclerosis Center and has with spasticity and one helpful transplantation to prevent or lessen
special interests in clinical research description of stretching is offered in rejection. It has also been used to treat
on the treatment of MS. Dr. Lynn Shapiro R. Syptom, Management in several autoimmune diseases that
serves on the Medical Advisory Board Multiple Sclerosis, 2nd ed., 1994, attack the human nervous system and
of The Transverse Myelitis New York: Demos Publications. there is significant experience in
Association. myasthenia gravis and inflammatory
However, sometimes stretching just muscle diseases (dermatomyositis and
The following information is offered doesn't do the trick by itself. There polymyositis). Cyclosporine has
as a general response to questions are several medications to try. shown some benefit in animal models
related to myelitis and is not to be Lioresal (baclofen) is a very common of multiple sclerosis but results have
construed as a specific medical antispasticity drug which can help been discouraging in clinical trials in
recommendation for any individual. with cramps and spasms. Lioresal multiple sclerosis.
This information is based on the works on nerves in the spinal cord
information provided in a brief that control muscle tone. The There are many potential
question and is without the benefit of amount needed or tolerated differs complications from treatment with
detailed history or an examination. from individual to individual. Some cyclosporine as there are with any
Any decisions regarding diagnosis or people develop sedation, nausea, or agent that is used to suppress the
treatment should be made in worsening of weakness from this immune system on a chronic basis.
consultation with your personal medication. It is common to start This is not meant to be an exhaustive
physician who is best suited to make with a low dose such as a half or list but gives the most common
the appropriate decision for you. whole 10 mg tablet at night and then complications. Chronic
gradually increase the dose. There suppression of the immune system
are other medications which can also carries an increased risk for common
1. How do people cope with leg and help with spasms and cramps and infections and for opportunistic
The Transverse Myelitis Association Page 7
infections, which are infections that system (brain and spinal cord) is also 31.
generally do not occur in healthy common in SLE. Transverse
people but may occur in people whose Myelitis may occur in SLE and often 2) Barile L and Lavalle. “Transverse
immune systems are not functioning this may be severe, recurrent or Myelitis in systemic lupus
normally. Hypertension (high blood progressive. Because of this, erythematosis: the effect of IV pulse
pressure) is the most common side aggressive immunosuppression is methylprednisolone and
effect and is usually reversible when recommended by some researchers. cyclophosphamide,” Journal of
the drug is discontinued. Rheumatology. 1992, 19:370-2.
Cyclosporine may also cause Prednisone is the traditional
dysfunction of the kidneys by causing treatment for the various problems 3) Bevra Hannahs Hahn.
constriction of the arterioles (small associated with SLE. However, “Management of Systemic Lupus
arteries) in the kidneys. There is less chronic prednisone use is often Erythematosis,” in Kelley
risk of this when a dose of less than 5 associated with significant side WN, Harris Jr ED, Ruddy S, and
mg/kg/day is used. There is also a effects, such as Sledge CB. Textbook of
risk of cancers with use of osteoporosis and catarracts. In Rheumatology, Volume 2, Fifth
cyclosporine. This risk is 3.0 to 4.9 addition, at times the myelitis Edition. W.B. Saunders Co.,
times higher than the risk of the associated with SLE may be so Philadelphia 1997 (a major
general population. Most often these aggressive that it does not respond to Deanne Gilmur
are lymphoproliferative cancers (e.g., prednisone alone. One regimen that Honored at FOP/TMA
lymphoma, leukemia) or skin cancer. has been Conference
Cyclosporine can also have toxic recommended is the use of
effects on the brain, especially the corticosteroids in combination with
cerebellum. Other side effects cyclophosphamide. One approach is comprehensive rheumatology text).
include liver inflammation/injury, to give monthly intravenous doses of Deanne Gilmur was recognized during
gallstones, decreased appetite, cyclophosphamide along with the awards banquet of the FOP/TMA
imbalances of body potassium and corticosteroids for some period of Conference on May 9, 1998. The
magnesium, and abnormal sensations time (six to twelve months) followed award was presented by Paula
(e.g., burning or tingling) in various by oral prednisone with or without Lazzeri, representing the TMA Board
parts of the body. oral cyclophosphamide. of Directors, and on behalf of the
membership of the TMA. The
When a person is being treated with Cyclophosphamide is a form of certificate of appreciation recognizes
cyclosporine, he or she should be nitrogen mustard and damages the Deanne:
followed closely by the physician, DNA in rapidly dividing cells which
with frequent checks of blood include white blood cells. Moderate • For her
pressure, blood tests to check blood doses are used for commitment to educate,
advocate for and serve
counts, renal function, and routine immunosuppression in autoimmune those with Transverse
chemistries, as well as screening diseases. Toxicities include, but are Myelitis;
examinations to check for skin and not limited to, bleeding from the • For her
lymph node cancer. bladder wall, bladder cancer (risk unselfish ability to grow
dependent on cumulative dose), low beyond her own difficult
experiences to help
3) Have you heard of intravenous blood counts, nausea, vomiting, hair others;
cytoxan treatment for Transverse loss, infertility. • For her
Myelitis associated with lupus? leadership to found The
Several references regarding the use Transverse Myelitis
Association;
Systemic lupus erythematosis (SLE) of cyclophosphamide for treatment of
• For her creative
is a chronic autoimmune disease that myelopathy associated with SLE: energy to organize and
affects many organs and may vary direct the TMA’s
greatly in severity and which organs 1) McCune WJ, et. al. “Clinical and development;
are affected from person to person. Immunologic Effects of Monthly • For her
Administration of intravenous compassion to give
Some people with SLE have rashes, comfort and support to
arthritis, mouth ulcers, or problems cyclophosphamide in severe systemic those in need; and
with kidneys, lungs, or blood cells. lupus erythematosis,” New England • For her spirit,
Involvement of the central nervous Journal Medicine. 1988, 318:1423- intellect, good humor,
Page 8 The Transverse Myelitis Association
In Their Own Words: Pain Management
Not all people who have Transverse Myelitis experience nerve pain, but for those who do, this becomes one of the
most difficult aspects of having this condition. In this issue of The Transverse Myelitis Association Newsletter, the
issue of pain management will be addressed through the following articles submitted by our members for the In Their
Own Words column. In preparing their articles, the members were asked to consider the following issues: 1) Provide
a brief description of your history with TM; how long you have had TM, the initial symptoms, your current condition
and where your injury is located. 2) Describe when in the course of having TM you began to experience pain.
3) Describe where you feel pain and try to describe the sensations that you feel. If you experience different sensations
in different parts of your body, please identify those. 4) Describe your history with medications to treat the pain.
Describe the medications that have been successful for you and those which have not, including the combinations and
dosages. 5) What, besides the medications,has been successful in decreasing your pain? 6) Are there certain
activities or positions that cause you to experience more pain? 7) Describe the explanation you received from your
doctor as to the cause of your pain. 8) If your pain has stopped, please describe how long after you have had TM that
this occurred, and describe any circumstances surrounding this event. 9) Anything else that would help a person with
pain from TM better cope with their situation. We are most grateful for our members’ willingness to share this
information in the newsletter.