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Volume 2 Issue 1 September 1998

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.

Anonymous because I also have a fractured femur Jessie Danninger


from a fall after having had my hip
female, age 60
replaced. The surgeons don't want to
touch it probably because of my other take the edge off so I can get some
medical problems (osteoporosis and sleep. I'm very careful only to take it
friendship, generosity,
kindness, insight and lupus). My balance never was too at night and only then when really
courage. good, but now it is so bad that I have necessary and I, frankly, live in dread
to hold on to something or look for a of being told that I have to go back to
We are all very grateful ramp to go down one step and that, I that much agony because of fear of
for the opportunities believe, is a result of TM. For about addiction.
that Deanne has create
for us and are very proud 2 years before the diagnosis, I was
of her accomplishments. troubled with the tingling but could
Thank you, Deanne. walk and just accepted it, assuming it I developed Transverse Myelitis in
was poor circulation. It was April, 1993 at the age of 19. Within
diagnosed when I sought medical 24 hours of onset, I was almost totally
I have a sensation in my right foot help one day because the foot went paralyzed from the neck down. The
that I call tingling, but it is sometimes numb and that's when I was lesion occurred at C-4 and therefore it
really more like a hideous electric hospitalized. I am female, age 60. was my hands and arms that were
shock. During the day, I get annoying most seriously affected. I had severe
tingling. I wriggle the foot, and if That was by way of background. pain during onset, but that disappeared
privacy permits, stamp it. It is when I Back to pain and pain management. I within a day. I spent the next month
put my feet up to relax or try to sleep have tried Baclofen, Nortryptiline, in the hospital and rehabilitation
that it is just plain murder. Also, Klonopin and Flexeril, as well as all center learning to walk and take care
when having an MRI, it is impossible kinds of anti-inflammatory of myself. By the time I left the
for me to keep the leg from twitching. medications, both prescription and rehabilitation center, I could walk, but
over-the-counter. None of these I was weak and my hands were both
I was diagnosed with TM about 8 helped. No matter how sleepy the very paralyzed. In the four and a half
years ago and was hospitalized and medications made me, I went to bed years since, I have become much
given IV cortisone. The doctors told and soon realized that my right foot stronger and my hand function has
me, after an MRI, that the lesion was was in a frog-like position with the been greatly improved through tendon
in the cervical area and that I am 80% sole resting against the left foot in transfer surgery. I currently work
recovered. I can walk about a half some kind of effort to damp the forty hours a week, but I am easily
block at a time, but the weakest link vibration and knew it was going to be fatigued.
in my mobility probably is not the TM a long night. Darvocet usually does
The Transverse Myelitis Association Page 9
One of the most difficult aspects of fall. Unfortunately, this medicine pain, but it is easily relieved by
recovery was dealing with the intense made me very sleepy and I usually changing position or moving around. I
pain that developed about 6 weeks slept about 10-12 hours a day.
after onset. By then I had returned However, the relief I got from that Jo Ellen Finkelstein
home and was spending a lot of time horrible pain was well worth it.
doing therapy, so I thought the pain in While on this medication, I normally
my hands (the most severely felt no pain, but if I would get wish I could say more about exactly
paralyzed area for me) was just due to stressed out or not get enough sleep, I when or why my pain went away. It's
overuse. I tried to cut back a little on would begin to feel that aching in my difficult for me to understand why,
my hand therapy to rest them, but the shoulders, elbows and hands. especially since the pain was so
pain continued to get worse. It Whenever I forgot to take a dose, I excruciating initially. All I can say is
gradually spread up my arms to my would realize that the pain was just that I struggled with the pain for a
wrists, elbows and shoulders. Within beneath the surface. while, I found relief with
a month of the pain beginning, it was Amitriptylene, I prayed a lot and one
at its worst. The pain is difficult to In May of 1995, two years after I was day my pain was gone.
describe. It was not muscular pain struck by Transverse Myelitis, I was I began my journey with TM on
but deeper, like in the tendons and scheduled to have the tendon transfer October 6,1996. I was returning from
bones -- a little like what I imagine surgery on my right hand. In order to a weekend at a Science Fiction
tennis-elbow feeling like. It was most prepare for the surgery, I had to stop Convention, and noticed on the way
intense in my joints and it was taking all medication. I intended to back that my back and hips hurt.
constant. I tried slings to rest my do this gradually. I usually would When we stopped for gas and a soda
arms, but that didn't help. My parents take six 10 mg pills of Amitriptylene (and bathroom break), I almost fell
bought a mini whirlpool machine for a day, and I planned to try to take and my boyfriend noticed that I was
the bathtub which helped a little, but fewer -- I planned to just take them walking funny. When we got home, I
only while I was in the tub. I would when the pain became unbearable. I laid down thinking I had overdone it
wrap a heating pad around my arms decided to start this a month before during the weekend. I took some
very tightly and would turn it on surgery so that by the time the aspirin and tried to take a nap. When I
"HIGH". This helped some, but I surgery date rolled around, I would tried to get up, I couldn't move my
burned myself a couple times this have weaned myself off the pills legs. I think I really lost it then; I
way. Nothing helped very much and completely. But the day that I began know I was screaming and crying
the pain was beginning to be this process, I never took a single from pain and fear. We had no idea
intolerable. Eventually, it was so pill. I didn't need any the next day what was happening.
intense and constant that it became either. When I stopped taking the
incapacitating. I could do nothing all medication, I realized that the pain In the ER they did X-rays, cat scans,
day except lie around holding my had vanished completely. By that and a spinal tap. Later, I had a
arms and trying to make the pain go time, I had been on 60 mg of mylogram and they tried to do an
away. I would sleep as much as Amitriptylene a day for almost two MRI, but I’m so claustrophobic that
possible because that was the only years and at some point for some they had to get me out almost
time I felt relief. My doctor reason, the pain had disappeared. I immediately. I was in the hospital for
suggested that the pain may be from went ahead with that surgery as well the entire month, physical and
"incorrect sensory transmission due to as a second and the pain never occupational therapy twice a day. By
damaged nerves" and he prescribed returned. I have not been on any this time, I was at least standing up
ibuprofen and Tylenol, but the effects pain killer for over two and a half over my walker and had walked down
were hardly noticeable. years and I have no pain. the parallel bars with assistance. My
Occasionally, I'll get a twinge of mild doctor thought I needed two to three
In August, after about two months of pain, similar to the kind I had four more weeks of therapy, but the
severe pain, I saw a neurologist at the years ago, but only when I'm very insurance company said to send me
Mayo Clinic in Rochester, Minnesota. stressed or very tired. I always need home. I was home for a week and
He prescribed Amitriptylene. This at least eight hours of sleep a night. seemed to be doing fairly well when I
was a miracle drug for me. After just To relieve it, I take a nap or find a had intense back pain again one night.
one dose, my pain began to subside. way to unstress myself (such as get a Back to the ER where they checked
Sixty mg a day kept the pain away massage). Sitting in one position for me for a kidney stone! Guess what?
and I was able to return to school that a long time also tends to induce the They didn’t find one! So, they sent
Page 10 The Transverse Myelitis Association
me back home in an ambulance even discovered that it went all the way to needles" feeling always there.
though I couldn’t move my legs the bone and had tunnels branching Eventually, it also included a
again. And this time I wasn’t off it. Well, this is a lovely place to "burning" sensation as though I had
breathing well. By the next morning, spend New Years! A month and a set my feet too close to the fireplace.
I hadn’t urinated in over twelve hours, half later, they were preparing to I was also having problems with
still couldn’t move my legs, and was send me home as I seemed to be muscle spasms in my legs. The
having more problems breathing. healing nicely. I asked them to do a spasms would travel up my legs to my
Back to the ER. This time they gave CT to check that there was nothing back and around my diaphragm. They
me some IV Valium and gave me an else going wrong. The infection was were so hard and so frequent that my
MRI. Hello -- guess what they saw? in the bone. I was home for a week back and ribs hurt constantly from the
A very clear spot on my spinal cord! and had to go back to have the bone muscles tensing up.
I guess that it wasn’t psychosomatic scraped and a muscle flap done.
paralysis after all! They found the They finally sent me home again (for
lesion on my spine at about T-10. a week), but the surgeon had missed After speaking to Dr. Fischer (my
The first diagnosis was Spinal Infarct, some tissue that had died just before physiatrist), he started me on Baclofen
but they later changed that to Acute they sent me home, so back I went. (10 mg., four times daily) which
Transverse Myelitis. I had never Two weeks later, I was back home relieved the spasms almost
heard of that, even though I had gone and coping with trying to get my life immediately. The pain in my back
to nursing school and was in the going again. Meanwhile, Dragon and ribs went away. It also helped
nursing field. I went down to the (my significant other) had been with bladder spasms. I still have some
medical library to see what I could neglecting his health and managed to spasms, but not nearly the way they
find out. There wasn’t much there have a heart attack right after I came were before.
and what I did find wasn’t exactly home. He had to have a triple bypass
encouraging. I left in tears. which meant he couldn’t help me After seeing several postings on the
take care of myself for a least six tmic list about relieving the pains and
I simply couldn’t understand why all weeks. My mom (77 years young) burning in the feet with Neurontin, I
of these things had happened to me. couldn’t stay with me to take care of approached my doctor with a request
Six months before the myelitis hit, I me for all that time and her house to try it. So far, he has me on a low
had lost my husband of 17 months to isn’t accessible at all. None of my dose which I feel has helped slightly.
pancreatic cancer. I had just started sisters or my brother could help (out We will probably have to adjust the
to pull my life back together, and I of state and coping with their lives), dose to be more efficient.
had a new job lined up. I didn’t work so the insurance company shipped
after Bruce was diagnosed, because me off to a rehab facility connected I have found that if I find something
we knew we didn’t have a lifetime to with my hospital. I was the only one to distract myself, I can usually ignore
spend with each other. Some new under fifty! I threw my version of a the pain for a while. But it is always
friends, a new love interest -- I hadn’t temper tantrum (less kicking my there, just moved to the back of my
been looking, but we met and clicked heels on the floor) and then got over awareness. If I am asleep, it usually
immediately. Life seemed to be it and made the best of it. I actually doesn't bother me unless it is really
looking brighter after a long black managed to cheer up some of the bad and wakes me up. There were
tunnel. So why me, and why this? patients and became sort of a times when I was in the hospital that it
Maybe, as my mother says, there is a cheerleader in therapy. was pretty bad. I had a tendency to
reason for everything that happens -- sleep a lot, partly to ignore the pain
if so, I wish to heck I had a clue!!!! My pain began with the onset of the and partly because of depression. The
TM. I had pain in my back from the worst times for the pain in my legs is
I was in the hospital this time for a beginning that was controlled with when I have water build-up in my
month and a half, getting out just in shots of Demerol in the hospital. system. When I have edema in my
time for Christmas. Home for a few After a while, they changed me to feet and legs, it is extremely painful
weeks at which time we realized that I Darvocet PRN (as needed). and I tend to go back to bed so that I
had a decubitus on my right hip. We Eventually, I stopped taking this too. can elevate my feet and legs.
thought that it was a stage two decub, That is, when the numbness in my
but when I started running a fever and feet started bothering me. It was The only real explanation that my
had drainage from it, I went back to constant and felt like my feet had doctors have been able to give me for
the hospital. As they debrided it, they fallen asleep with the "pins and the pain is that it is probably related to
The Transverse Myelitis Association Page 11
nerve damage from the lesion on my Sheila Fitzell twitches in my upper back and face.
spine. So, there isn't much to do for it The tendonitis I had in my wrists and
except possibly biofeedback and pain hands has diminished. At present, I
medications, which I prefer not to use visual expression of how I feel. I’ve have burning sensations in my ankles
unless absolutely necessary. In the even used it to create pictures and feet, and my feet are still
meantime, I continue to use representing the ex-wife and the hypersensitive.
distraction and occasionally aspirin to mother-in-law and after I think about
control it. what I drew, I delete them!!!! My doctor prescribed Elavil to help
calm the nerve endings, however, I
Having worked with people with experienced unpleasant side effects
constant pain before this struck me (I and stopped taking the Elavil. I
did private duty nursing with the occasionally take Tylenol to take the
majority of my patients being I was diagnosed with TM in August edge off of the pain.
terminal cancer patients), I was aware of 1996. Prior to that time, I had
of many ways of coping with pain. I recurring pains in the joints of my In the past 18 months the degree of
never thought that I would be the one legs and hands. I was also very pain has varied, and I firmly believe
having to use them! lethargic. I started to have difficulty the barometric pressure plays a role in
with my balance when walking and I this. It doesn't seem to matter
Currently, I am working on going became incontinent. I couldn't seem whether I sit on the couch with my
back to rehab and will be fitted with to lift my right foot and I started to feet on the floor or with my legs up on
braces to try to stand and take a few drag it. Then I couldn't stand up. the couch. The discomfort and pain is
steps. I have been home now for a This all happened in less than a there. So, this is what I have found to
record breaking three months and week. I was hospitalized and given help me. First, I am angry because
have been working on getting a new tests and then steroids. It appeared I I'm hurting, so I decide that I can't
life going. I have an appointment to was improving and started physical feel any worse and start to do some
meet with vocational rehab people. I therapy. I then moved to the rehab exercises. I do stretches, toe raises,
got on a list to find an accessible floor. A few days later, blood tests knee bends, etc., and walk around the
house through the local housing revealed that my potassium level was house several times. Sometimes I use
authority that I can buy. Just this extremely low, and my electrolytes the stationary bicycle. My feet tend to
weekend (Labor Day), I worked at the were out of whack. After this I sweat now, and then they become
Jerry Lewis telethon, as I did last became paralyzed and though I was cold and hurt, so I change my socks
year, and hope to continue working given more steroids, they didn’t and sneakers, but first I powder my
for them every year. work. I spent a total of two months feet and rub them a little. This does
in the hospital. My injury is located help for a while and I usually do this
I hope I will be among those who in the C7, and T4, T5 sections. 3-4 times a day. The other thing that
make significant recovery. I’m works for me is WARMTH!
working on standing with my I began experiencing pain about 3-4 Sometimes after I do the above, I put
therapist. But I’m not letting life pass weeks after entering the hospital. my legs and feet up on the couch and
me by. I will admit that there have Sitting in a wheelchair was very wrap a fleece blanket around them.
been times when I wanted to die (too uncomfortable. My feet felt as if Being warm is really soothing. When
chicken to do anything, though), so they had weights on them that were the sun does appear and streams
they still have me going to a dragging them down. This hurt through my window, I sit or stand in
psychiatrist once a month and it terribly and I was given Tylenol. it's rays. It feels so good. I wonder if
helps. I have also had to cope with However, the only time I got relief I was a cat in a former life!
my late husband’s ex-wife -- to stay was when I was sleeping. Additionally, I find having your mind
in touch with my step-son -- and Eventually, I had burning sensations involved with something is very
Bruce’s mother. Of all the things from the tops of my legs to my feet helpful, such as telephoning a friend
Bruce left behind, I wish he had taken and this whole area was and listening to their problems, read a
them! Having my computer here has hypersensitive. The least nudge book, write letters. Of course,
been a great outlet for me. When I could send me into orbit, and I could depending upon your degree of
get down, I can write in a journal I not bear the slightest weight on my independence, get out of the house,
keep, or I get into the paintbox area legs. I still have mild tingling in my get someone to go for a walk with
and create something that gives a hands, and occasionally experience you. Go out to lunch, take an elderly
Page 12 The Transverse Myelitis Association
friend to church or to the grocery that laying on my side with a pillow was taking everyday. I wanted to
store, bake a cake. Normally, I am between by legs (I didn’t like the reduce the medication, because twice
unable to sit for more than an hour sensation of my skin touching) and when I got the flu, I overdosed on the
without getting up and walking a the bed elevated seemed to ease the Tegritol. I was told that this happened
little. However, recently I sat for pain. Finally, the pain was so intense because my body underwent a drastic
three hours watching a movie, Titanic, that I complained to the nurses and change due to having the flu. As a
and because my mind was occupied, I doctors. result of the high levels, both times,
did not notice any pain or discomfort the doctors cut back my dosage and
in my legs or feet; just a little stiff I currently take 200 mg. of Tegritol gradually increased the amount again
when I got up! during the day and 75 mg. of after I recovered from the sickness.
Amitryptiline at night. The
Let's face it, we may have to live with Amitryptiline helps me sleep by With direction from my neurologist, I
this pain for the rest of our lives...so making me very drowsy, it helps have gone from taking four 200 mg.
let's live!! I do not remember ever with my bladder urgency, and it may tablets to one 200 mg. tablet a day. I
receiving an explanation as to the also be helping to alleviate some have remained at the one pill a day
cause of pain. pain. Before I started taking the now for about two months. I can feel
Amitryptiline, I would have to go to the increase in pain, but I am able to
Pauline Habib the bathroom about 5 times a night. I cope with the pain at this level. I am
experience a dull burning sensation wanting to be completely off of the
during a typical day. I would not be Tegritol. I am hoping that I will have
able to take the Amitryptiline during more energy because of not taking
I'll be interested in reading about the day because it really makes me Tegritol. I wake up tired and go
other peoples’ ways of dealing with drowsy. through my day very tired.
the pain. I hope this is of help to
someone. I always wake up in the morning I do not really understand how this
with little or no pain. I usually feel pain I experience through most of my
Sincerely, little or no pain when I shower and day really works. I know that I have
Sheila Fitzell when I am in the pool. Laying not had any visible improvement in
horizontally always eases my pain as my condition for about two years. So,
I have had TM almost four years now. does elevating my feet and sitting on how is it that I am able to reduce my
I first started to experience lower back my hip. Sitting for any length of pain medication? I think that I am
pain about two months before my time causes me much pain. able to better manage it for myself.
injury. Then, in July 1994, I caught Before I got TM, I never understood
the flu. As I was trying to get my From what I understand, the nerve how people “lived” with pain
clothes on after a shower, I bent down coverings were damaged. So, the everyday. Well, medications help to
too far. I felt an excruciating pain in message that is received from the get the pain to a place that’s
my lower back and fell to the floor. I brain is that there is some damage manageable and you just deal with it.
was paralyzed from the waist down and thus there should be pain.
and diagnosed a week later with I am a kindergarten teacher. I
lesions at T-12. I was on Dilantin for a short time. It absolutely love my job! When I am
was not effective in relieving my with my kids, I do not experience any
I remember that my pain first started pain. My neurologist put me on pain. Because I am so focused on the
in my feet. My feet were swollen for Tegritol. I was on 800 mg. of children, I do not feel tired or feel
quite awhile after I was hospitalized, Tegritol during the day and 75 mg. of pain. Keeping busy and doing things I
and I attributed my pain to the Amitryptiline at night for about three love to do has helped me
swelling. After I started physical years. We started out with a low tremendously to take the focus off of
therapy, I began having pain from the dosage of Tegritol and gradually how I am feeling.
waist down. I thought that it was worked up to 800 mg. About every
because I was spending too much four months, I have to have my blood
time in my wheelchair. The pain felt taken to check the levels of Tegritol.
like I had a very bad sunburn. The
pain became so bad that I would lay I decided that I wanted to see if I
down between PT sessions. I found could reduce the amount of Tegritol I The TMA does not endorse any of the
The Transverse Myelitis Association Page 13
In Their Own Words never get them off. I have the hot
burning feelings in my back and my
In each issue of the newsletter, we will bring you a column which presents the neck sometimes feels weak. I have
experiences of our members. Their stories are presented in their own words control of my bowels and bladder. I
by way of letters they have sent us. We are most appreciative of their drink a lot of water and I do go to the
willingness to share their very personal stories. It is our hope that through the bathroom a lot. I have a sensation or a
sharing of these experiences, we will all learn something about each other and pressure when I need to use my
about ourselves. It is our hope that the stories will help us all realize that we bowels, but I do not feel the sensation
are not alone. You may submit your stories by sending them either by e-mail when all passes.
or through the postal service to Sandy Siegel.
I’ve continued to work. My co-worker
and friend, Ellen Bergeron, has picked
Deborah Capuano down. My feet felt like blocks of ice me up and dropped me off to work. I
Wakefield MA and sitting was very uncomfortable am a medical biller and sit a lot, but --
as the numbness seemed to intensify. or should I say butt -- I get up a lot and
Before the full onset, which did not stretch and change position. The
take long, I noted at night, while beginning of this was harder to deal
medications, treatments or products falling to sleep, I would have the with and I wanted to stay home and I
reported in this newsletter. This shakes inside to the point where the had to sometimes. Going to work
information is intended only to keep bed felt like it was vibrating. made me stay somewhat normal. With
you informed. We strongly advise support from family and friends, I
that you check any drugs or I saw my primary doctor, Andrew tried to keep a normal schedule. At
treatments mentioned with your Lim, who ran some blood test and the end of the day, I couldn’t wait to
physician. sent me to a neurologist, Dr. Paul go home and go to bed. Always tired.
Chervin, who ran many tests; four
My name is Deborah Capuano. I am MRI’s, including brain (I wanted the Also, and I have not read about this, I
48 years old. I have two sons, brain scan to hang over my desk at told the doctor that I had this sensation
Andrew, 26 and David, 24, who both work for proof -- as I’m blond, you when I dropped my head (chin to
live out on their own. I am divorced can imagine the jokes as I went for a chest). I have a shooting vibration that
and live alone. My story sounds brain scan)! I also had blood tests goes from my neck and straight down
somewhat like Kerry DeFilippo’s of and a spinal tap. both legs and my feet. It occurs more
Chicago. when I am exhausted. But I almost
End result -- Dr. Chervin told me that like it, because it is a feeling and
I was away on vacation in March of I had Transverse Myelitis. I never beyond that, I had none. This is called
1997 in Aruba. I noticed while heard of this and to boot, there were Lhermittes sign?
walking on the beach that my feet felt no answers as to why I had TM. I
funny -- tingling. I thought maybe went to Dr. Chervin thinking I had I am in my eighth month. The hard
something bit me. Later, I went harmed myself while horseback numbness has gone, but the tightness
horseback riding in the mountains. riding or maybe I had swallowed remains within, as under my skin. I
Nothing like what you see on something evil when I snorkeled, as I can feel touch now, but it is almost
television when they show someone believed that I had swallowed the annoying. I am back to driving;
galloping on the beach. We went whole ocean. Not so. I took actually, I drove in the fourth month as
over a mountain to get to a beach and prednisone, 60 mg. for one month. my feet had what I call a release, but
I was scared to death I would fall off Nothing. That was it for me. It has an asleep-like feeling, tingles.
the horse -- or that the horse would to run its course.
fall off of the mountain with me on it. And so it goes. I’m told I will get
I was always active and now I can’t well. I know I’m in for some pain as
Because of my fear, I pressed my feet even drive myself to work, because I this leaves. I have to say that although
hard into the stirrups, numbing my can’t feel the pedals. I feel like I I’ve been lucky about the pain, I have
feet some more. The rest of my walk like a robot, but after reading been bothered with achy knees. I was
vacation (a few days), I was bothered other stories, I praise the Lord that I told mostly women are effected in
while walking. When I returned do walk. I feel like I have a pair of their joints with this? I know I have
home, I was numb from the waist panty hose from hell on and I can used my body differently through this.
Page 14 The Transverse Myelitis Association
Can’t wait for a good night’s sleep; Debbie Ziler eventually). I am left with a
rolling over is a wake up job to flip Akron, Ohio neurogenic bladder, (I am now able to
your strange legs. void some on my own, but not always
and never complete; I use intermittent
My sisters, Susan and Doty, helped catheterization), abnormal temperature
me find you on the internet. I do not and skin sensation from the chest
have a computer. But I was so down remain, and periodic lower back
excited to hear of this support pain still persists with tingling in my
association with Transverse Myelitis. legs. I’ve learned to live with the low
I felt like I was the only one in the I received a letter from Debbie Ziler energy level and interrupted sleep
world with this. Not that I’d wish this in November, 1997. Debbie was pattern due to the neurogenic bladder.
on anyone, but you feel power in diagnosed with Transverse Myelitis
numbers and maybe our goals will be in August, 1986. She has provided What you’re doing is a wonderful
reached when we all help each other. us with a letter that she had sent to thing. I first found out about the
Ann Landers about her experience Association through the Web. With
This is what I have done. Once a with TM to offer support to another mixed emotions, I read everything I
week, I went to my friend’s, Donna person who had been given the could -- sometimes not wanting to see
Beal’s, who is a message therapist. diagnosis. I have included both of what I was reading, but still forging
She has helped me immensely with her letters in the column. on. Knowledge is still better than
positive thinking -- she is very being in the dark. Thanks for all your
holistic and we even went to a healing November 13, 1997 efforts.
session together -- very powerful.
She has been very generous, as this is I just received the October Sincerely,
her business. Newsletter which prompted me to Debbie Ziler
complete the survey I copied from
I have read Spontaneous Healing, by the Web. I’ve also included a June 9, 1988
Andrew Weil, M.D. -- a powerful medical history prepared in 1988 for
book that can help give hope. I really the Cleveland Clinic, and a letter I Dear Ann:
loved this book. I listen to music. wrote back in June of ‘88. Publish it This letter is written to the gentleman
I’ve gotten into healthier eating and if you think it would be of help to diagnosed as having Transverse
take herbs -- Astragalus, Vitamin C, anyone. The onset of my illness Myelitis. His wife wrote to you
Flax Seed Oil -- to help my immune dates back to August of 86. I am one asking for direction.
system. In Dr. Andrew Weil’s book, of the longer-term survivors you are
he makes a comment, Illness can be a looking to hear more from. I am a 34-year old woman who in
gift. Well, that’s one to think about. August of 1986 was diagnosed as
You have no choice but to slow down Not that I wanted a reminder, but I having Transverse Myelitis. I was
and take a good hard look at your life. wish I had kept a diary of events temporarily paralyzed from the chest
during my illness so I would have down. The illness also shut down
I’ve always liked to write detailed information of what actually bowel and bladder function. I have
(surprised :)?) -- mostly poems and took place which might have been still not fully recovered normal
some songs. I never did anything helpful to others. It was just so bladder function. However, after 2-
with this. But the positive thing out overwhelming at that time that I 1/2 months in the hospital, 6 months
of my Transverse Myelitis is that I never got around to it. I’ve answered off work and many hours of therapy, I
got one of my poems published! Talk the survey questions to the best of am back to full-time work.
about slowing down and taking time. my recollection, but I’m sure I’ve
forgotten some things. It was not a The main reason for my writing this
I continue to heal. I pray all the time time in my life that I wanted to etch letter is to relay to this gentleman to
and thank G-d for people who care, in stone. not give up on himself. A week into
like Deanne Gilmur who founded this my illness, one of the young
Association for people like us. G-d My recovery was fairly quick. neurosurgeons in attendance told me I
bless us all and especially the Within 6 months I was back to work would have a 50-50 chance of ever
Association officers. (on a part-time basis at first, working getting out of bed again. I thought
back to a full 40-hour week that was an awful thing to tell
The Transverse Myelitis Association Page 15
someone and I refused to believe him. mosquitoes are no longer a nuisance the time the brother got back into
I tried to set goals for myself from -- I can’t feel the bites, thus no town, both legs were numb, I had
that day on. They told me I’d be scratching. I cannot state strongly incredible pain down both legs, bowel
ready to be transferred to a rehab enough the need for a positive was involved and I had what they call
hospital in two weeks -- I told them I attitude -- I know it’s hard, but I saddle anesthesia. Everywhere you
was ready to go 1 day short of two truly believe it hastened my would sit on a saddle I was numb.
weeks -- that was my first victory -- I recovery.
felt in control (as much as you I saw the brother and he immediately
possibly can be in this situation). I won’t deny that it’s been a long saw my symptoms and sent me to the
hard road back to recovery. I don’t hospital, thinking that this was some
There are certain side effects of this think, knowing what I know now, sort of neurologic problem and not a
illness that just can’t be hurried that I’d be able to do it again -- but I disc. This was a teaching institution,
through. Neurological damage takes did it! If there is anything else I can so he thought I would be in the best
time to heal. But don’t give up on say or do to give you hope, please do place. This was a Monday night. By
yourself no matter what the doctors not hesitate to contact me. Best Tuesday night, I had my first MRI of
have told you. The mind is a very wishes to you, the brain. This showed nothing.
powerful thing if you’ll let it work for Then my MRI of the spine. There it
you and not against you. I’ve read Terri Miller was, a lesion at l5-s1. I couldn't
cases where people have rid their Brandon MS believe that this little area was
bodies of tumors without invasive causing all this problem. They
surgery -- just by thinking them away. immediately did a spinal tap to send
Scan the literature and read as many off for multiple sclerosis, and started
success stories as you can. Believe in Debbie Ziler me on a five day course of solumedrol
the inner power of healing. 1000 mg. Daily. This seemed to help
Mind Over Matter!! some.
No doctors cured me. I cured myself.
They were only there to administer Dear Sandy: After my course of steroids, I was
sleeping pills so I would get a good sent home. I was to be under the care
night’s rest -- and prescribe I wrote to you back in September of a physician that was out of town. I
antidepressants for depression -- to when I was first diagnosed with was to see her in two and one half
check vital signs -- and to collect their Transverse Myelitis. Today, 4 1/2 weeks. The physicians sending me
fee. Maybe I’m being a little too months later, I am definitely not that home didn't prescribe any physical
harsh -- but this illness is so new to same person inside or out. Please therapy. They sent me home on a
the medical profession that they really share this letter with the rest of the medrol dose pack and pain medication
don’t know what to look for. They troops so they can understand that because I still had severe pain.
tried to grow cultures of the virus to there is hope for this “condition.”
isolate what type it was, but had no I laid in bed for two weeks and
success. After five spinals, I’d had it! At the time, I wasn't sure of my fate. continued to regress. Finally, my
I was the first case my family My area of lesion was at l5-s1, I physician saw me only to inform me
physician had ever seen! work for an orthopedic surgeon, so that the physicians in the hospital
when I started having problems, we forgot to draw blood to go with my
This is a very hard illness to deal with immediately thought herniated disc. spinal fluid for my MS test, so the lab
-- especially when it afflicts someone He sent me home for bed rest and a just threw my fluid away. Finally,
healthy and full of life. For me, medrol dose pack. He didn't want to after a re-tap, this came back with no
family was my salvation. I’m not out do any surgery on me, so his brother, suspicion for MS. My doctor started
of the woods yet; I’ve been left with being a neurosurgeon, he decided it treating me for my Transverse
nerve damage from the chest down -- would be best that he take a look at Myelitis. The most important factor
the result of this being a loss of me. His brother was out of town, so that she did for me was physical
normal sensation in these areas; it I laid at home with bed rest for therapy three days a week. She also
does not alter my life in any way almost one week before I was seen replaced my pain medication with a
other than cutting and bruising myself again. It had started with one foot medicine called Neurontin, which
and not knowing it until the marks tingling, then progressing to the helped my pain tremendously! She
show up. On the plus side, knee, then the numbness started. By also started me on Metrotrexate once
Page 16 The Transverse Myelitis Association
a week, three pills, twelve hours thing! and talk at a nearby restaurant. So,
apart. This made me very ill. we did and I got through to him a
Finally, she told me of a drug called I would love to give any inspiration I little. Got him talked into coming
Zofran to help with this. You take it can to any patients newly diagnosed home with me to lift weights and
one hour before chemo and it would or to those who have had it for years! check a few things out in the good
help with the sickness. It worked. I You can't let this thing get you down. book, the Bible, to help him see that
didn't even know I was taking the The moment you think it is, you just he was not alone.
chemo. This was an experimental work that much harder to make sure
thing she was doing, but reports it doesn't! I have a wonderful When I got in my truck, I saw I was
showed it worked. It was to stop the husband that worked hard for me low on gas, so I stopped to fill up and
progression of the lesion. during this time. He took care of my get a pop or two. While I was paying
family so I could take care of myself. for my gas, a robber came from
Within a month and a half of I had a lot of support from my nowhere and stabbed me in the back
diagnosis, I was off my walker, to a mother and father, sister and brother, between T7 and T8. Boy, did it hurt.
cane, at work for four hours a day and and the church that I grew up in 30 It left me with my right leg stiff. It
feeling like I could go back full time! years ago sent out prayers would not work. He had hit my spine
I guess I wasn't convincing enough, everywhere. They took up with the tip of the knife. And I was
so I worked that much harder!! collections for me while I was out of down for some while. Also, got staff
Within two weeks, I was off my cane, work. I had a lot of love!!!!! This, infection from it. Had to take
and working full time. I worked very too, is important. antibiotics for six weeks to kill it out.
had to get my strength back! This is But through hard work, I mean hard, I
very important. You can build If I can be of any help to anyone out have lifted weights for 30 years now,
muscles and walk even if you don't there, please let me know! This is and no workout was as hard as me
feel your legs or feet! It can be done. very important to me to let people getting my toe to start working. But I
know that this thing doesn't have to did. And one thing after another
The physical therapist that I had was be as bad as you might think. came back until I just about got it all
wonderful. She worked on upper Thanks for letting me share! back. Except for the dorsalflex. I had
body strength, lower body strength, toe drop.
balance and propriaception; all this Sincerely,
was completely gone, except for the Terri Miller, 37, and looking forward But after a while, I got so spastic,
upper body strength. It seemed like there were times that the attacks
Paul Sullivan
that was all I had. Once I started would last up close to two hours and
getting my strength back, there was Phelps, Kentucky
the pain got to where I could not
no stopping me! All the rest seemed stand it. There were so many times I
to follow with time. would pray to die to get some relief.
to a life filled with hope and Then one day, my doctor in
The last of December, the 29th to be happiness! Cincinnati, Ohio said, let’s put a
exact, my daughter's first birthday, I Hey, Sandy, this is my story. But battery in your back to stop them
had a repeat MRI. The chemo first of all, thanks so much for all you spasms. So, I said, anything. And,
worked, my lesion was gone!!! have done so bummys like me can you know, it worked -- it worked
Nothing there except some scar tissue understand this TM a little better. good to the point to where I was out
which was to be expected. Now it is running in the yard with my boys. I
February 2, 1998 and I still have On February 25 of 1990, I was called was so happy. But after about three
some numbness in my feet, a small out from my home by a young sister or four months, scar tissue grew and it
amount up the lateral aspect of my who had a friend in school that was stopped working and I was right back
legs and a small amount of "saddle thinking about killing himself. So, in the same mess I was in before. So
anesthesia," but I feel that I am an elder called me up and asked if I much pain, and the tremors got even
continuing to progress. would care to check things out, worse. So, the doctor said, let me put
because the boy and I had about the a pump in ya’ and put Baclofen in it.
I realize that I am probably a story same upbringing. So, off I went at But I had a reaction to it, so he put
that most people don't hear about; not 2:00 AM to find the boy and try to Morphine in it. And it worked. But
as bad as others. But that is why I am help. When I found him, I talked the side effects were bad to the bone.
writing. There is hope to beat this him into going to drink some coffee Each time I went for a refill, I would
The Transverse Myelitis Association Page 17
vomit for a week, at least. But I since. normal life. I played tennis again; I
could walk without pain. Before, began golfing more seriously. I
each time I would use my dorsalflex So, if any out there gets a pump, walked without a limp unless very
or hamstring, it was like hitting my please watch out for dizziness and tired. Fast forward to the fall of l997.
funnybone in my elbow. I just could weakness. If it comes, be sure to get Seven weeks before my son's
not do it. It just hurt too much. But I it checked out. And if any of the wedding, I relapsed following an
have got to say the Morphine they put symptoms come on you like me, acupuncture treatment to relieve the
in, it stopped all that. make the doctor see ya’. Don’t let band of pain in my chest. Within ten
him say, it’s just another side effect. minutes of the treatment, my right leg
But after about a year or less, I started Well, I guess this hill-billy has said was feeling strange sensations. I have
getting dizzy to the point where I enough. If I can be of any help, let no clue what happened to cause this
went and saw three different doctors. me know. relapse. I am seeing an excellent
But they all said that nothing was doctor at Southwest Medical School
wrong. But after about a month of Your hill-billy friend, here in Dallas. We certainly share
getting weaker and weaker, I got up Paul Sullivan many characteristics with MS
one night to go to the bathroom only Thanks for the reply to my first E- patients. My brain scan is clear; I
to fall to the ground. I was having a mail. Actually, my daughter from have no oligloconal bands in my
heart attack from the Morphine. It Cambridge is helping me during this spinal tap. My lesion, at about T-4,
caused my blood pressure to drop to Elaine Henrion is always the same -- no multiple
90 over 40 or less. So, they kept me lesions. I will keep you informed of
in the hospital in ICU for three days, any new things this doctor wants to
then flew me to Lexington, Kentucky try. Please share this letter if you feel
where they done a heart recovery . I guess the hardest part is it would be helpful. Thanks for your
catheteritization. At the same time, the severity of this relapse. I have encouraging words.
they changed the Morphine. They had over 7 grams of Solumedrol in My name is Sheila Fitzell and on 3
said they thought I had got a bad the past two weeks and am January 96, after 18 years of Federal
batch. continuing on Dekadron for a short service, I retired from Westover ARB,
while. I am basically confined to
Everything went OK until the next home, moving from the bed to the Sheila Fitzell
morning when I woke up. I had never port-o-potty, to the wheel chair, and South Hadley MA
vomited so hard and long, and my now the walker. I am very lucky to
right leg was numb from the foot to have a lap pool and I did get in it the
the knee. I told the doctor something other day. Tomorrow I will water MA. My husband, Mike, had retired
was wrong, but he said it was just a walk again -- no lap swimming yet. the previous year and had been
side effect to the new Morphine. So, My TM experiences are very similar waiting for me to reach 62. Prior to
he checked me out of the hospital. to many of the stories I have read. I TM, my health had been good. I have
But I knew something was wrong, so have been diagnosed for 15 1/2 always been physically active doing
I went only across the street and years. I was relapse free for over 8 step aerobics, walking, dancing, and
checked into a hotel. I went to bed. years. I feel certain that many of my had plenty of energy to play with our
Never have I been so tired. So, my ten relapses were caused by grandchildren who live nearby. We
wife tried two more different times to ignorance of the medical have a total of nine delightful
get the doctor to see me only to turn community. For example, I was grandchildren. In February of 96, to
me down saying it’s only a side effect given a tetanus shot four months celebrate our retirement, Mike and I
of the new medication. So, as the day after my initial attack. Within seven went on a lovely vacation to Hawaii
went on, so did the numbness until it days, I had great weakness in my and climbed up Diamond Head (no
got in the other leg and up to my legs. Some time after that I was small feat). In May, 96 we drove to
waist in both legs. Now I am a given solocaine for the removal of Florida, stopping on the way to visit
complete, and I do believe it all came warts on my hands. Again, I friends and relatives in Virginia,
from the Morphine. What do you relapsed. Then one of my sons came North Carolina, and Georgia. We had
think? After I checked back in the down with mono and I relapsed arranged to meet our son, his wife and
hospital the next day, they cut off the again. My recovery after these their four children for a week at
pump and filled it with water. And relapses varied in degree. However, Disneyland. The following is what
you know, I have not been dizzy I was able to get back to a fairly happened.
Page 18 The Transverse Myelitis Association
The MRI appeared normal. I told the later, I became extremely weak, and
On 3 June, 96 at Disney World in neurologist that I was having some my muscles fatigued easily and once
Florida, I received whiplash on the difficulty with my balance when again, my legs gave way. I was
Thunder Mountain ride. My walking. Also, when I was standing unable to use the walker and needed
symptoms were a severe headache, at the vanity in the bathroom, I found help to get to the commode. A blood
pain at the back of the neck, burning myself swaying towards the mirror. test indicated that my potassium level
sensation on either side of my hips, The neurologist ordered a Sensory was extremely low, my electrolytes
extreme pain between the shoulder Evoked Potentials of the extremities. were out of whack! What a mess. I
blades when walking, skin super Unfortunately, I was unable to get an could barely lift a spoonful of apple
sensitive to the slightest touch (felt appointment until a month later. At sauce. I felt nauseated all the time. I
like sunburn). The doctor prescribed this point, I was extremely fatigued believe that it was probably anxiety.
muscle relaxant tablets and activator all the time and then on 9 August 96 With high doses of potassium, I
and muscle therapy was prescribed by I became incontinent. I couldn’t quickly improved, however, I never
a chiropractor. The symptoms understand what was happening to got back to where I was in my
became worse to include double me. I had always had plenty of progression in PT and my energy
vision upon waking up and with lower energy and the bladder of a camel! level was low. Other setbacks
back pain traveling down my buttocks On Sunday, 11 August 96, I had included loss of trunk control, I now
and upper legs. We drove home from difficulty in walking, my legs felt was unable to sit up without help.
Florida to Massachusetts on 24 June weak and I began to drag my right Paralysis of the legs, and now the
96. foot which felt like pins and needles. sensation of a tight band around my
On 12 August 96 the foot dragging ribs. I was terrified. Of course, no
On 26 June 96, I went to my primary was more pronounced. I tried to one said the word paralysis. I referred
care physician about the lower back reach my neurologist, but he was out to it as numbness and when this vice-
pain. He ordered a CAT SCAN of my of town, so I contacted my PC like grip of my rib cage came, I knew
lumbar region. The results were physician. He ordered a CAT fear! I wondered if the “numbness”
normal! Over the next few weeks, I SCAN. On 14 August 96 I woke up was going to continue. I truly was
returned to my doctor with the and went to get out of bed to stand scared. I wasn’t in control. A painful
following complaints: headaches, and promptly collapsed. My legs rotator cuff and extreme pain in my
mainly confined to the top of my were unable to bear my weight. I left wrist and lower arm made me
head. I felt as if someone was pulling could not walk without great miserable. Pain in the fingers of both
my hair out. I also felt sharp pains in assistance. I was scared. My right hands and also thumb joints. I had
the bones of my face. I had joint foot is no use at all. I was admitted several tests for arthritis, and all came
pains in my hands (fingers, thumbs, to Holyoke Hospital and back OK. One day I woke up and the
etc.) and elbows. The onset was neurological tests were performed. front portion of my tongue was numb.
sudden and the pain would last a day Steroids and bed rest are ordered and There was some spasticity in my legs.
or two and would switch from one then MRI’s followed. The diagnosis The tingling in my hands was worse
extremity to the other. I woke up one was Transverse Myelitis. My doctor when I bent my head. My appetite
morning and was unable to move my explained that it was caused by a was poor, probably because I felt
right ankle in either direction without virus attacking the myelin sheath, constantly nervous. My hands and
extreme pain. As the day wore on, I etc. I drove myself crazy thinking arms felt weak, and my sense of touch
was unable to bear any weight on that about where I might have picked up was different. Things just didn’t feel
foot without severe pain. I was this virus. I really felt helpless as right. My right hand trembled some.
treated with anti-inflammatory pills there was no one to talk to about No one was saying anything and I
and I was better three or four days this. Within a few days, I was able thought, is this what the rest of my
later. to use the walker and with help, go to life is going to be like? I could not
the bathroom. After about a week, I cry while I was in the hospital and I
Because of the continued head pains started physical therapy and seemed felt like I had to put on a cheerful face
and tingling sensations down my arms to be improving. My spirits were for everyone. With my British
and hands, my doctor referred me to a good. Ten days after being admitted, background, I had to pull-up-my-
neurologist who noted diminished I was transferred to the rehab unit socks-and-get-on-with-it, so to speak.
reflex responses in my legs. On 31 within the hospital. Then I started My girlfriend, Peggy, would either
July 96 he ordered an MRI. I returned having PT twice a day. At this point, come to see me every day or call me.
to him a week later for the results. I was using the walker. A few days She would bring me little treats like
The Transverse Myelitis Association Page 19
ice cream sundaes or Italian pastries. my legs or feet came into contact hospital, my girlfriend, June, who at
Mike would often come during dinner with something cold, I felt a burning the time lived in North Carolina,
time and one night Peggy and her sensation. If someone bumped them offered to come and help us. What an
husband brought pizza and wine even slightly when I was in my ANGEL! I don’t know how Mike and
(non-alcoholic) and even wine wheelchair or bed, it would send I would have survived without her.
glasses. As much as I appreciated all terrible sensations up my feet and June was appalled when she first saw
these little treats, I was not able to legs. The burning sensation in my me as I had lost quite a bit of weight
enjoy them because of the state of my legs was constant but bearable, and and looked pathetic. She later told me
anxiety. My world, as I knew it, had yet there were times that my feet and that she had felt overwhelmed at my
come crumbling down. I was terribly legs felt like blocks of ice and were condition. June has great
dependent upon others for my needs. very painful. If my legs were near organizational skills and she literally
This is a very humbling experience! anything that was metal, they seemed rolled up her sleeves and went to
to attract the cold (and still do); all work! It took several days for her to
7 October 96 I was discharged from and all, extremely unpleasant organize my bedroom so that
the hospital and came home in a feelings. When I first came home, I everything that was needed was on
wheelchair unable to move even a was evaluated by the physical hand. She bought one of those wire
toe! I was unable to stand or sit up therapist and tested 0-trace for vegetable carts on wheels and we
without assistance. I was unable to muscle strength. I started to have PT filled that with supplies. June tried to
turn myself in bed. Unable to use the twice a week and then once a week. coax me to eat by making favorite and
commode without assistance. Our After the first two weeks home, I tempting meals and many deserts. At
home was a town house with the began to see small improvements first, my heart was not in eating as I
washer and dryer located in the which has continued. My physical felt anxious all the time, and my
basement and the full bathrooms and therapist, Karen, was a wonderful, tongue was still quite numb; food did
bedrooms upstairs. The dining room caring and supportive person. Our not taste right. She was always
was open to the living room. Prior to first attempt to go out in the car to a cheerful and kept looking for ways to
my coming home, Mike had had to local store was horrendous. Mike make me feel better about myself.
build a 28 foot ramp as there were got me into the wheelchair and then She would put her warm hands on my
four steep steps leading into the into my winter jacket (mistake #1); feet and push against them, and move
condo. Another smaller ramp was off we went down the ramp to the my legs and help me with the trunk
built to cover three steps leading car. He then hoisted me up out of control therapy. Little by little each
down into the living room. This the chair, because at this point I was week, we saw some tiny
made it possible for me to be wheeled no help to myself, and turned me improvement. June would have made
down for a change of scenery. around so that I could flop into the a terrific physical therapist or First
Because I could not use the stairs, car. We had to be careful that I Sergeant!! Each time Karen came,
Mike had removed the dining room didn’t bash my head against the door June would make suggestions of what
furniture and borrowed a single bed. frame. Anyway, after repeating this she thought we could do to improve
The dining room thus became my procedure three more times, we were our situation. Karen was very open to
bedroom/bathroom for the next two safely back at home and thoroughly these suggestions and had plenty of
and a half months. What a delightful exhausted and thinking that we’d not her own. Mike built me a four foot
surprise I had when I was first be trying this again too soon! parallel bar. My first attempt to use it
wheeled into the dining room and saw However, the next time Karen came, left me totally exhausted. Karen had
the pretty flowered sheets and a we asked her how we could make it wheeled me over to it and on the
coverlet on the bed. It looked lovely easier for Mike and me to go out. count of three, I would try to pull
after the sterile hospital room of the The SLIDE BOARD!! I had been myself up and try to make a step. I
last two months. Mike had gone doing exercises for my trunk control couldn’t believe how incredibly weak
shopping for these things knowing and once sitting up, I could stay that I was. And, of course, the next day
how much I liked pretty things. I way. I was able to use the slide my wrists and/or shoulders were
doubly appreciated this act as Mike board to get from the bed to the chair painful. It didn’t take much for my
absolutely hates shopping. and eventually into the half-bath tendons to become inflamed. Mike
room. What a treat that was in terms got me some hand and wrist protectors
At this time, my legs were of a little independence!! to wear (like for those who have
hypersensitive and I could not bear carpel tunnel syndrome) in the hopes
the slightest weight on my legs. If Before I came home from the that it would help. I just needed to
Page 20 The Transverse Myelitis Association
remember not to press with my hands. However, when the muscles walker. My fears and concerns were
However, when your legs are weak, fatigued, there was nothing I could allayed when I met Donna, my new
you tend to use your hands and arms do but rest. therapist. I was re-tested and my
for support. Just doing five muscle strength was 3+ to -4. Donna
repetitions of any given exercise tired Mike and I settled into a new gave me new exercises to do
me out. However, Karen, June and rhythm, and like others before us in including therabands and ankle
my friend, Peggy, gave me such situations such as ours, you learn weights. After my first session there,
encouragement and hope that I began ways to cope. I would wheel myself I used a public bathroom by myself
to believe I might walk again. into the kitchen and park next to the for the first time ... another little bit of
sink remembering to put the brakes independence!
After six weeks of caring for me and on. Then pulling myself up, I would
helping Mike, June returned to North be able to start to make the meal or 1 February 97. Today, I started to use
Carolina. I was devastated. Mike do dishes. I could also fold clothes. a walking cane.
was upset, too. She was my lifeline. For our self worth, I think it’s
How were we going to manage. important to be able to contribute. 18 February 97. I went to Brigham
Well, my friend had prepared us. We At this point, of course, I was still in and Women’s Hospital in Boston for
had lists of menus, and the right kinds the leg braces and that allowed me to a third opinion and to rule out the
of foods, etc. taped to the refrigerator. move along side the cabinets as I possibility of MS. After the
However, June had also talked to me could hold onto the counter top for neurologist had reviewed my medical
about how Mike was going to need all security. There were times when we records and performed some of his
the help I could give him as he was both “lost it,” his from the own tests, he gave us the answer we
worn out from worry and concern. overburden and mine from hoped for. I did not have MS, but
Over the years our roles had been frustration. As I started to progress, I TM. Thank,
clearly defined with me being the told Karen that I had a goal. I G-d. What a relief. During those first
care-giver and nurturer and Mike needed to be able to master the stairs few months at home, my emotions
providing for our family’s welfare in order to sleep in my own bed with were like a roller coaster. We had put
and generally taking care of us. Mike my husband of forty-three years by our townhouse up for sale and it was
is a caring, loving person who wants Christmas. My grandchildren, who nerve wracking. However, we did
to fix any problems. This TM had live a few miles away, had told their sell it and closed on 27 May. Three
him at wits end, and now he had to be father that it just wouldn’t be the days later, we moved into our new
care-giver, cook, do the laundry, same if Nana and Pa didn’t come for condo which was all on one floor and
shopping, pay the bills, fight with the Christmas. So, I had another reason certainly makes life easier for us both.
insurance company, etc. He did for wanting to master the stairs and It has taken the past six months for
yeoman’s duty! I know I’m blessed not wanting to let my darlings down. me to feel like this is home, because
to have him in my life. Before June I prayed for the strength and stamina at first, there wasn’t much I could do.
left, we contacted friends who each to be able to climb the steps into However, as I’ve gained more energy
agreed to come in once a week for an their house. We succeeded and and stamina, I have been able to put
hour to do my leg therapy. This was enjoyed Christmas day with them. my own touches to the place. It will
when I still needed help moving. feel more like home once I have some
There were eight ladies (I call them 7 January 97. The insurance would family gatherings here.
Angels). I did therapy twice a day. no longer pay for the VNA therapist
Sometimes I could barely get through to come to the house. So, I must go Of all the things I missed the most, it
as I was easily fatigued. It was good out to a rehab center. I’m anxious was not being able to participate with
to see other people and hear their about this and wish I didn’t have to my grandchildren. This left such an
stories and Mike felt comfortable change. Karen has been so good for ache in me. However, this summer I
leaving me to run errands while the me and I’ve done so well with her. was able to go to some of their
“Angels” were here. So we both Additionally, I’m worried that I baseball games and then in the fall, of
benefited. They are wonderful ladies; won’t have enough energy left by the course, all three played soccer. They
three of them worked full time and time I reach the place. The rehab is have been for a sleep-over and we’ve
still came. How could I not get better located inside the local YMCA and been together for holidays, so things
with such love. I was determined to in order to reach it, I will need to use are getting back to normal. I continue
pull my weight and pushed myself to the wheelchair to conserve my to progress and have much more
do as much as possible to help Mike. energy. Once inside, I will use a stamina now and only use a cane in
The Transverse Myelitis Association Page 21
unknown territory. I still have some Katie Gilmur: An But it also means that she is
burning sensations in my right foot Inspiration To Us All developing into a wonderfully
and the foot often feels like it’s intelligent and lovely girl that seems
asleep. The cold air really makes my Deanne Gilmur unwilling to let anything stand in her
legs very uncomfortable, a stinging way. She has enormous drive and
sensation. So, like Linus, I always determination. She has also
have a small blanket with me. of the refrigerator! She was so developed skills that under other
However, I’m not complaining. I precocious and physically athletic. circumstances may not have been
thank It was this athleticism that was developed.
G-d every time I stand in the shower, needed after her TM diagnosis.
kneel, walk around the kitchen and To help improve Katie’s coordination
cook, and walk down the street! Some months after her first birthday, and muscle tone, we started her taking
she was playing with several other horseback riding lessons through a
This past 18 months, there have been toddlers in our home. She tripped local therapeutic horse back riding
many prayers said for my recovery; twice. I thought it must be the new program when she was 2 1/2 years
some by people I don’t even know. I salt-water sandals - her first. A old. My oldest daughter, Britany, had
believe those prayers along with the couple of hours later, while been a serious show rider and had
physical therapy and the caring shopping, she collapsed. I put her on volunteered in the same therapeutic
support of my family and friends has her feet and she "melted" again. I riding program when she was
helped me to get where I am today. tried again. This time instinct told younger. I knew from this experience
me whatever was happening was a that Katie could gain balance and
A few months ago, I found out about major CNS problem. At the stability, and would have great fun -
the TMA. Sandy Siegel very pediatrician’s office, she was all while learning to ride. For the next
graciously gave me time and checked and then we were sent home 2 1/2 years we regularly attended the
information and the names of fellow to watch. At 3:00 a.m. the next riding classes. Katie developed as a
victims of TM in my area. It has been morning she hadn't urinated and rider and clearly had a natural "seat,"
wonderful talking with these people. could not stand. In the morning she the term horsepeople use for the
They have been very kind and received a MRI and was hospitalized correct position in the saddle.
understanding and shared their for a week. It was a hellish time. Eventually, my husband became a
experiences with me. The world had changed in just a few board member for the therapeutic
hours. It felt like all of our dreams riding program and helped organize
I started this story with events leading and hopes for Katie were gone. We the annual auction. It was at this
up to my diagnosis of TM. At first didn't know what her future would event that our future horse was being
my doctor thought the whiplash I be and at that point, even if she auctioned and my husband did the
suffered at Disney World was a would have a future. And this bidding! We were urged by a friend
contributing factor, however, my diagnosis - Transverse Myelitis? to bid on Joy’s Pride, a then 14 year
neurologist said no. I don’t care; I What did that mean? old half Arabian/ half Saddlebred
just want to get well! mare. We purchased “Pride” whose
Over the next 7 years, we learned easy gait makes it easier for Katie to
what it means. It means Katie is ride. From that point on, this
partially paralyzed from the T9 level wonderfully talented and kind mare
down. It means she spent much of and Katie became a team. She now
her pre-school years in physical competes regularly in English hunter
therapy; it means she wears braces classes and very successfully.
that are often uncomfortable for her.
Katie was one of those babies that It means she has difficulty walking She recently won the High Point
couldn't move fast enough or early safely or playing active games. It English Award at February’s Tacoma
enough. She walked independently at means she gets foot sores that hurt Unit Winter Series Show. To see 9
8 1/2 months old. When she was 10 and are difficult to heal; it means year old Katie aboard her 15.1 hand
months old, I walked into the kitchen struggling with incontinence and horse, Joy’s Pride, she looks tiny and
where she had been playing with pots bladder infections and so much fragile. But inside that tiny package
and pans to find her standing on the more. is the heart and determination of a
kitchen counter climbing onto the top champion. Katie’s acceptance of her
Page 22 The Transverse Myelitis Association
disability and her enthusiasm for are different in many ways from Local Support for Persons
riding is an inspiration to anyone who those experienced by adults with with TM: Transverse
meets her. Her award came after TM. In order to better serve our Myelitis Support Group in
competing in just 5 other shows. membership, the Association needs Norfolk, Virginia
to learn more about our members;
What's important about her success is the first survey was the beginning of Pam Ramsay
that she, like all kids with TM, that process. A frequent request
needed to find some recreational made of the Association comes from
outlet, a sport she could compete well parents who are seeking out other weakness in lower extremities. Upon
in. To be able to successfully ride parents who have children with TM. arriving at our local hospital, my son
and show her horse has become a Often, parents are also looking for was in a coma. He remained in the
very important part of her life. There other children who are of similar coma for five days. When he
are many activities and sports our age and who have similar regained consciousness, he had a
kids can do even with decreased experiences as their own child so memory loss of about two years. In
abilities to ambulate. For her, that they might correspond with each his mind, he was four years old. He
horseback riding is something she can other. We would like to facilitate was affected at the T-5 to T-6 level.
compete in with anyone. You cannot this network for parents of children He was paralyzed and in stable but
see her disability when she is in the with TM. We will publish a separate critical condition. The virus was still
saddle. She's now beginning to take directory that lists the same attacking his nervous system with a
her horse over jumps. She reports information that is found in our 50/50 chance of surviving. He started
that she loves the feeling of flying Association’s membership directory, therapy and was on the road to
over obstacles. I can see the joy on only with the addition of the names recovery.
her face when she and her horse are and ages of the children who have
galloping. She's found a way to run! TM. We will only distribute this My son was transferred to the
Katie may not have become such a directory to parents who have a Richmond Crippled Children’s
talented rider if she had not gotten child with TM and who provide the Hospital where he was to undergo
TM. information for inclusion in the extensive rehabilitation. During the
directory. The information can be first month of rehab, he showed signs
Please, don’t misunderstand. I grieve reported to the Association on the of his toes moving. We were told that
daily for her losses and know there form that is included in this it was muscle spasms. He was
are plenty of difficult times ahead. newsletter. SJS progressing daily and was having
Being different isn't easy. I don't more movement in his feet and legs.
romanticize this adversity. I don't By the end of the two month stay, he
believe she got this because we could was able to walk with KAFO and
handle it. Sometimes, maybe often, I forearm crutches. The next hurdle he
don't handle it. Instead, I'm tired and Breaking news... Deanne Gilmur endured was his bladder not
angry and afraid for her. But she's throws away all of her yellow legal functioning properly. He had a
tough and strong and unafraid. She is pads and purchases computer. bladder augmentation. The surgery
surviving TM very nicely. In fact, was successful, but he started at
she's thriving in spite of it with a little Deanne can now be reached through ground zero with rehabilitation. He
help from her horse. e-mail at: has entered Sub-Acute Rehabilitation
twice because of severe weakness.
dgilmurtma@aol.com Today he is up and ready to challenge
the world.
Hello, my name is Pam Ramsay,
President of our local Transverse
Membership Directory for My motivation for starting this
Myelitis Support Group in Norfolk,
Children with Transverse Myelitis support group is to help others going
Virginia. My son was diagnosed
through what we went through. We
with Acute TM March 16, 1990. He
Katie’s story represents one among a want to make a difference helping
began having flu-like symptoms
growing number of children in our others ease their pain. It took me
which became progressively worse
Association who have been diagnosed eight years to start this support group.
over a two-week period, having
with TM. The Association recognizes I was too angry and was trying to put
headaches, fever, numbness and
that children have special needs that the blame on someone for what my
The Transverse Myelitis Association Page 23
son went through and for what he is community are able to share this experience their relief that they are
going through on a daily basis. Our information with each other, they not alone, and their gratitude for your
goal through this support group is may be able to enrich the being there for them, you will never
AWARENESS. experiences of a neurologist who question the value of your
can, in turn, employ these commitment to your support group.
We welcome any suggestions and experiences to help his or her
encourage people to contact the patients more knowledgeably and We are very excited for Pam and wish
TMA. We encourage everyone who effectively. her well in her efforts with the
has TM to fill out the survey and Transverse Myelitis Support Group of
return it to Sandy. We need doctors There is also a great benefit to be Norfolk, Virginia. If you live near
to know more about this syndrome, gained through the sharing of Norfolk, please contact Pam to get
what it does, and the effects it has on information and experiences at the involved in the Group. If you are
people. community level. Each local and interested in starting a support group
state government has a unique set of in your community, please contact the
Pam Ramsay agencies, with unique rules and TMA and we will assist you in any
Transverse Myelitis Support Group procedures. There is a great way we can. We also encourage you
Hotline (757)858-8191 opportunity available for everyone to volunteer to be one of the TMA
Valtine88@aol.com when you share this information with State or Country Representatives. We
each other. Most of you have had to urge you to get involved. SJS
The Association was very pleased find this information for yourselves,
when Pam contacted us about including everything from social
starting a local TM support group in service agencies and the services
her community. Pam was very clear they make available, good
that she wanted to be there for people rehabilitation hospitals or clinics,
who were going through the difficult physiatrists and other medical
experiences that she, her family and specialists, good sources of adaptive
her son endured with TM. We were equipment, references to physical
excited about Pam’s interest, because and occupational therapists, to
we desperately need for people to find information about accessibility
each other and assist each other on issues and employment We Don’t Want to Lose You
the local level. That is the primary opportunities. There are people in
purpose for the distribution of the your communities who have had to Please notify the Association of any
membership directory and its educate themselves in most of these changes to your postal address, your
organization by state and country. areas. You can learn from each phone number or your e-mail address.
There is a great deal the TMA can do other and greatly assist others who You can notify the Association by
to support and assist our members. must learn it for the first time. You sending a letter or postcard to Sandy
But there is a great deal that you can are all the most valuable resources Siegel or by sending the information
do for each other, and perhaps more for each other. through e-mail to
efficiently and effectively. The most srulyosef@aol.com. If you identify
frequently requested information we It requires someone to come forward any errors in the membership
get from our members concerns a and to make a commitment to directory, you may also notify the
referral to a neurologist who organize the group. As I have Association with the corrections in the
specializes in TM. Our answer is that learned in the past four years in the same manner. SJS
no one specializes in TM at this time. TMA, it is an enormous commitment
We encourage people to contact the and responsibility. But there is an I am Deborah Capen, the Secretary of
persons with TM who live in their enormous reward for the efforts. The Transverse Myelitis Association.
area and to share information and The first time you talk to a person My personal experience with TM has
experiences about the neurologists who has been newly diagnosed with shown me that there is a lot of
they are using. It has to be of some TM, and are able to share all of the frustration associated with it, along
benefit for both the physician and for information you have about TM, with new physical disabilities that one
the persons with TM to be seeing a about the TMIC and the TMA, about must learn to cope.
doctor who has broader experiences the services and assistance available
with the condition. If people from a in your community -- and when you I am 46 years old with no past health
Page 24 The Transverse Myelitis Association
Deborah Capen, the steroids, I could just barely speaking to many of you, I have
Secretary of The Transverse wiggle the big toe on my right foot. realized that there is so little known
Myelitis Association At that time, it seemed like such a about spinal cord illnesses, and that a
major accomplishment. Each day lot of doctors are "groping in the
there was a bit more improvement. dark," when treating TM patients.
By day four, I was started in
problems. My children are all grown, rehabilitation and physical therapy. It has been a year since I was
so now the immediate family consists That was the first time I could stand diagnosed. In the first two months, I
of just my husband and myself. I with a walker. noticed almost daily improvement.
maintain three businesses in two Then my progress slowed, and I had
states which demands a very active My daughters had flown in from to note my improvement on a monthly
lifestyle and includes a lot of Detroit to stay with me at the basis. I have gone from walking with
traveling. On December 30, 1996, we hospital. They are all involved in the the aid of a walker, to walking with a
were flying from California to Miami. medical field, so the hospital was cane. I now only need the cane on
While on our first layover at the very accommodating. When I took days that are a little stressful, or when
Minneapolis airport, I began having my first step, they all applauded. I I am pushing myself too hard. My
terrible cramping pain in the backs of have had positive support from all of doctor told me that my worst enemies
my legs. Over a period of 1 1/2 my family from the very beginning. are "stress and fatigue." There are
hours, I went from painful walking to I believe that has been a major factor days that I can walk with hardly a
not being able to take a step forward, in my healing process. limp; then sometimes I can barely
to not being able to stand up. I keep balance to walk at all.
became paralyzed from the waist Although the doctors were able to
down. diagnose the Transverse Myelitis, I am back to traveling in business,
they were not able to tell me why I however, the physical activity is still
I had been involved in a single-car got it. Each doctor has had a somewhat limited. My energies are
rollover accident on December 15, different opinion as to how long I now geared toward staying in the
with no obvious injuries at the time. would live with the problems office, and "delegating" the work that
So when I was taken to the first associated with TM. I cannot physically handle. There
hospital, that was mentioned to have been bad, painful periods, and
medical personnel as a possible cause I was released from the hospital 8 with the help of my husband and
of the sudden paralysis. Based upon a days later to fly back home to friends, I have gotten through the bad
quick examination, it was determined California. I left with a walker, a times.
that my paralysis was not accident- week's supply of pain pills, a booklet
related, but neurological. The doctors on how to self-catheterize, and many, There are so many people in the world
admitted that they were not many questions. that are being diagnosed with
experienced enough in neurological Transverse Myelitis, and I know how
problems, so I was taken by Through close friends and a lot of they feel. They have never heard of
ambulance to the Neurological research, I was referred to an this rare disorder, want to know "Why
Trauma Center in downtown excellent neurologist. He is very Me?," and for some of them, there
Minneapolis. I was admitted experienced in spinal cord illnesses, may be little improvement in their
immediately with an initial diagnosis and has worked with me to find the new disabilities.
of possible Gullian-Barre Syndrome. perfect balance of medications and
Tests performed on me included treatments. Through the Internet, I The Transverse Myelitis Association
MRI's, spinal tap, electrical impulse discovered the Transverse Myelitis has been formed to help those of us
tests on my legs, blood tests, and Internet Club, an excellent support with TM gain a bit more knowledge
more blood tests. Along with group for TM "victims" that was of our disorder; to know that we are
aggressive testing, I was started on IV started by Jim Lubin. Ultimately, not alone. I hope that my
steroid treatments. After a few days, my search led me to The Transverse administrative skills will be of benefit
the new diagnosis was Transverse Myelitis Association. to the TMA - that together as a team
Myelitis, with a lesion at the L-2 we can accomplish the goals that have
level. My body's response to the I have learned that there are so many been set.
steroid treatments was almost different "theories" concerning the
immediate. The first morning after cause and prognosis of TM. In If anybody would like to contact me, I
The Transverse Myelitis Association Page 25
would be very happy to talk to you. I laid there and said "I can't Momma, I also has a really great life! She is
can be reached on the Internet via e- can't move". This was early evening surrounded by a wonderful family, has
mail at <dcapen@ivic.net>. You can about 7:00 PM. a college education and a career, and
also write or call me at the numbers is a full participant in life! We are all
listed on the back of this newsletter. The doctors were shocked to see me enriched from knowing and working
again in the emergency room with her; the Association regularly
Debbie has brought a wonderful paralyzed from my neck down. I benefits from her contributions. We
energy and enthusiasm to her work as could move my arms a little. I was are very proud of all of Paula’s
Secretary of the Association. She is effected at the C6-7 level. I was put accomplishments and are grateful for
driven in her tasks by her compassion through all the tests. About a month the job she performs for The
and the insights she has acquired post onset, I was diagnosed with Transverse Myelitis Association. SJS
through her own experiences with TM. Transverse Myelitis and moved to a
Debbie has brought her business Children's Hospital where I
skills, experience and expertise to the underwent intensive physical and
planning and operation of our occupational therapy. After 4 Once again, the generosity of caring
Association. We are really pleased to months of Children's Hospital, I was people has multiplied the balance of
have Debbie as the Secretary of The released to go home. I was able to our account. As of June, 1998 The
Transverse Myelitis Association. We regain most of the use of my hands. Transverse Myelitis Association has
greatly appreciate her efforts to make The fine motor skills are still tough. an account balance of over $6000.00.
us a more efficient and responsive They have since moved the level of Thanks to the Claddagh Foundation
organization. SJS my paralysis to T-1. I can feel for the $5,000.00 donation earlier this
everything from T-1 down but pain year. This is one small step toward
October 25, 1979. I was 12 years old and temperature. My legs feel numb our ultimate goals and we’re getting
and at a Halloween party. I had a bad and tingly. I use a wheelchair 100%
back ache and decided to go to bed of my day. TMA 1997 Financial Report
early. When I woke up in the
morning, the back ache was still there I was never given steroids. I don't Paula Lazzeri, Treasurer
so my friend’s Mom took me home. know if they were giving them that
Once home my Mom tried a heating long ago. I'm now 31. It hasn't
pad on my back. But once again the stopped me much. My family has excited knowing the future will be
Paula Lazzeri, always been very encouraging and even greater.
Treasurer of The supportive. I made it through
Transverse Myelitis college, have worked as a tax Our membership of 180 people is now
Association accountant for the past 9 years, am more than 925 and growing. The
married now for 11 years, and have a ability to make the world aware of our
5 year old son. Unfortunately, I've organization through the Internet and
also had cysts, a collapsed lung, 3 our newsletter publication has been of
ache just wouldn't go away. So my full spinal fusions, broken tailbone, tremendous value, as we all know.
Mom and Dad took me to the broken femur, many bladder I’m sure it’s of no surprise to you how
emergency room. They checked me infections, and skin breakdowns. many people are ignorant of this
over, X-rayed me and sent me home Quite the busy life. disease, including physicians, nurses
with the diagnosis of a pinched nerve. and medical research people. Our
Thanks, newsletter now goes out to an
By the time I got home, my balance Paula incredibly large reading audience. As
was getting pretty bad. As I walked It only takes knowing Paula for you saw in the last Treasurer’s report,
through my house, my knees would about five minutes before you fall in Sandy, our editor, and Deanne, our
buckle and I barely had enough love with her. She is a truly president, had been paying for all of
strength to get up. Feeling very weak, remarkable person. That she has the printing, postage and telephone
I laid down in front of the TV with my recounted her story for you in about costs of the Association through 1997.
siblings. While there I fell asleep. I 400 words speaks volumes about her. It’s time for the rest of us to sit up and
felt this wave of paralysis go from my Paula is definitely a doer. She has do our part!
feet to my neck. When I awoke, my had very difficult experiences and
mother was telling me to go to bed. I has had some serious losses. But she It may help to know where your
Page 26 The Transverse Myelitis Association
donations go when you send in your service and activities, and to enable is called the “Donor Voice” program,
check or money order. A percentage TMA to increase the scope of services in others it is called “Specific Care.”
will go toward defraying the costs of Your area may even have a different
printing, the postage to mail all Revenues: name for this aspect of United Way
communications, the phone calls giving. You can designate The
necessary and all work regarding the Donations 1162.16 Transverse Myelitis Association as the
Association. Now hear this great recipient of your United Way
news! Plans are on the table for a Total Revenues 1162.16
contribution by following these
future conference to be held in instructions. All you have to do is
Expenses:
Tacoma/ Seattle. We will be working write the name, address and phone
to raise funds to see that plan through. Internet Access 199.32 number of our organization (see
Remember, the TMA is a not-for- below) in the appropriate place on
profit organization and your Mileage 4.80 your United Way pledge form. Please
contributions are all tax deductible. encourage your friends, relatives and
Parking 2.00 co-workers to consider designating the
We are exploring many avenues for TMA as well.
fund raising, such as researching Phone 739.27
government grants, corporation golf The Transverse Myelitis Association
tournaments, car washes, garage sales, Postage 633.04
received funding as part of United
and appeals to philanthropic sources Way’s 1997 fundraising campaign.
Printing 1800.54
dedicated to needs such as ours. We Consequently, the TMA is already
welcome any and all ideas that will Supplies 91.10 identified through United Way of
help our Association along these lines. Pierce County, Washington as an
You know where to reach us. Total Expenses 3470.07 organization that can receive United
Way funding when you designate the
If you are interested in making a tax- TMA as the recipient of your
deductible contribution to the TMA, Net Income/ (2307.91) contribution.
please make your check to The (Loss)
Transverse Myelitis Association and The TMA depends on community
mail it to: Paula Lazzeri, Treasurer, support. The TMA community is
The Transverse Myelitis Association, Contributions to The expansive as it includes each of you,
10105 167th Place NE, Redmond, Transverse Myelitis your City or Town, your medical
WA, 98052. We greatly appreciate Association Through the community, your educational
your generosity! As a review of the United Way institutions, your libraries, and your
past year, I have included the TMA friends and relatives. Contributions
1997 Annual Financial Report below. Dick Gilmur are essential to the continued success
The expenses identified in this report and growth of the Association and its
were covered by Deanne and Sandy. programs and services. The
There was an operating net loss, and activities that it provides. There Association tries to serve each of you
because none of the donations were are many ways to financially support to the best of our ability and to the
used in 1997 to cover expenses. the activities of the Association. In extent of our finances. Together we
Given the small account, it was addition to sending your contributions can continue the TMA’s success story.
decided that the Association should directly to the TMA, the United Way Please consider supporting the TMA.
carry a balance. program may provide you with a
The Transverse Myelitis practical alternative method for All direct contributions to The
Association 1997 Annual Report contributing. Transverse Myelitis Association can
be sent to Paula Lazzeri, Treasurer
As you know, The Transverse In each of our communities, United (see Treasurer’s Financial Report for
Myelitis Association is supported by Way conducts annual fundraising Paula’s address). United Way
your tax-deductible contributions. drives. The United Way program contributions require the corporate
Contributions to the organization are allows participants to identify specific address to be used. When you fill out
greatly appreciated as they are needed 501(c)(3) organizations to receive the United Way form you must
to continue TMA’s current level of their contribution. In some areas this include the following information
The Transverse Myelitis Association Page 27
with the TMA designation: Deanne Gilmur. The survey is also you in completing the survey. So long
available on our web site. You can as the responses are properly
The Transverse Myelitis Association download a copy or you can fill it numbered, you may use whatever
3548 Tahoma Place West out on-line and send it electronically paper you would like to complete the
University Place, WA 98466 in your e-mail or internet software. survey. Also, if it is easier for you to
(253)565-8156 If you have the survey, but have not complete and send the information
yet completed it, please take this electronically, please feel free to type
The TMA began to administer opportunity to help us help you! your responses and e-mail them to the
surveys to our members in January, Please take the time to complete and Association. Please send them to
1997. Our membership at that time return it. srulyosef@aol.com.
was approximately 180 people.
Today, we have over 925 members in Please follow these instructions We greatly appreciate your
the Association. The survey when responding to the survey. willingness to provide us with this
represents an attempt to collect, Most of the survey questions are very personal information. We will
analyze and publish information open-ended. We have provided only publish the results of the survey
about Transverse Myelitis, including minimal space on the questionnaire analysis in future newsletters. If you
for your responses. For some of have any questions or concerns about
The TMA Survey Research: these questions, you are going to the survey, please feel free to contact
It’s Not Too Late to Make need additional paper to provide us Sandy Siegel or Deanne Gilmur.
Your Valuable Contribution with your answers. We urge you to Please send the responses to:
use additional paper and to provide
Sandy Siegel us with as thorough answers to each Sandy Siegel
of the questions as possible. When The Transverse Myelitis Association
you use additional paper, please 1787 Sutter Parkway
number each of the responses so that Powell, Ohio 43065
such issues as the onset of the they can be properly matched with
condition, the treatment of symptoms, the appropriate question.
and the demographic characteristics
of people who are diagnosed with Please answer the questions to the
TM. Physicians cannot begin to best of your ability. If you have
understand TM without your difficulty remembering dates, the
willingness to share with them specific sequence of events and their
information about yourself and your durations, medications or any other
experiences. The TMA has access to specific information requested in the
more people with TM than any survey, please discuss these issues
doctor, health care institution or with your families and with your
research organization; we are the best doctors. Attempt to reconstruct
source of information on the events as best as you can. It is
Transverse Myelitis condition. The important that we collect accurate
more information we are able to information. If you are providing us
report to physicians, the better they with approximations or with your
will understand TM. With better best recollections, that is fine. Just
understanding comes better treatment; indicate the level of accuracy of the
we are all the beneficiaries of this information in association with the
information and experience. Given information you provide us. For
the diversity of experiences that are example, if you are not certain of the
represented by our members, it is exact amount of time you
imperative that everyone participate experienced flu symptoms before
in completing the survey. you contracted TM, please indicate
that your answer is an estimation.
If you have not completed and
returned the survey, you may get a If you have difficulty writing or
copy of it by writing to or calling typing, please ask someone to assist
Page 28 The Transverse Myelitis Association
Transverse Myelitis Association Officers
TMA Internet Update
TMA Home Page: http:// Deanne Gilmur
www.myelitis.org President & Founder
Jim Lubin TMIC Home Page: http:// 3548 Tahoma Place W
www.myelitis.org/tmic Tacoma, WA 98466
(253)565-8156 dgilmurtma@aol.com
TMIC Message Archive: http://
In February, 1998 the TMA www.myelitis.org/tmic/archive Sanford J. Siegel
obtained the Internet domain Members’ photos: http:// Vice President & Newsletter Editor
address myelitis.org and changed to www.myelitis.org/tmic/members 1787 Sutter Parkway
a new web server host. With the Powell, Ohio 43065
(614)766-1806 srulyosef@aol.com
new domain address, it has made it New e-mail addresses:
easier for people to find us online. Debbie Capen: dcapen@myelitis.org Paula Lazzeri
Jim Lubin: jlubin@myelitis.org Treasurer
The new server host has also given 10105 167th Place NE
us more storage, 50Mb of storage. Paula Lazzeri: plazzeri@myelitis.org Redmond, WA 98052
The original web site was on a sub- Sandy Siegel: ssiegel@myelitis.org (425)883-7914 paulal@attachmate.com
account on AOL. With the Deborah Capen
Automated Info reply:
additional storage, I was able to info@myelitis.org
Secretary
move the TMIC web pages and PO Box 2084
Membership related: Hemet, CA 92546
message archives off of my private membership@myelitis.org (909)658-2689 dcapen@ivic.net
internet account to the TMA Newsletter related:
Jim Lubin
account at myelitis.org. This has newsletter@myelitis.org Director, Internet and Web Site
also enabled us to have pictures of TMA Survey related: PO Box 82433
members online so we can "meet" survey@myelitis.org Kenmore, WA 98028-0433
Web site related: fax: (425)483-0215 jlubin@myelitis.org
each other. Here is a summary of
the new web pages: webmaster@myelitis.org

The Transverse Myelitis Association


Sanford J. Siegel
1787 Sutter Parkway
Powell, Ohio 43065

The Transverse Myelitis Association


announces a conference and fund
raiser in Seattle in August, 1999

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