Katie Gilmur: An Inspiration To Us All
Deanne Gilmur

Katie was one of those babies that couldn't move fast enough or early enough. She walked independently at 8 1/2 months old. When she was 10 months old, I walked into the kitchen where she had been playing with pots and pans to find her standing on the kitchen counter climbing onto the top of the refrigerator! She was so precocious and physically athletic. It was this athleticism that was needed after her TM diagnosis.

Some months after her first birthday, she was playing with several other toddlers in our home. She tripped twice. I thought it must be the new salt-water sandals - her first. A couple of hours later, while shopping, she collapsed. I put her on her feet and she "melted" again. I tried again. This time instinct told me whatever was happening was a major CNS problem. At the pediatrician's office, she was checked and then we were sent home to watch. At 3:00 a.m. the next morning she hadn't urinated and could not stand. In the morning she received a MRI and was hospitalized for a week. It was a hellish time. The world had changed in just a few hours. It felt like all of our dreams and hopes for Katie were gone. We didn't know what her future would be and at that point, even if she would have a future. And this diagnosis - Transverse Myelitis? What did that mean?

Over the next 7 years, we learned what it means. It means Katie is partially paralyzed from the T9 level down. It means she spent much of her pre-school years in physical therapy; it means she wears braces that are often uncomfortable for her. It means she has difficulty walking safely or playing active games. It means she gets foot sores that hurt and are difficult to heal; it means struggling with incontinence and bladder infections and so much more.

But it also means that she is developing into a wonderfully intelligent and lovely girl that seems unwilling to let anything stand in her way. She has enormous drive and determination. She has also developed skills that under other circumstances may not have been developed.

To help improve Katie's coordination and muscle tone, we started her taking horseback riding lessons through a local therapeutic horse back riding program when she was 2 1/2 years old. My oldest daughter, Britany, had been a serious show rider and had volunteered in the same therapeutic riding program when she was younger. I knew from this experience that Katie could gain balance and stability, and would have great fun - all while learning to ride. For the next 2 1/2 years we regularly attended the riding classes. Katie developed as a rider and clearly had a natural "seat," the term horsepeople use for the correct position in the saddle. Eventually, my husband became a board member for the therapeutic riding program and helped organize the annual auction. It was at this event that our future horse was being auctioned and my husband did the bidding! We were urged by a friend to bid on Joy's Pride, a then 14 year old half Arabian/ half Saddlebred mare. We purchased "Pride" whose easy gait makes it easier for Katie to ride. From that point on, this wonderfully talented and kind mare and Katie became a team. She now competes regularly in English hunter classes and very successfully.

She recently won the High Point English Award at February's Tacoma Unit Winter Series Show. To see 9 year old Katie aboard her 15.1 hand horse, Joy's Pride, she looks tiny and fragile. But inside that tiny package is the heart and determination of a champion. Katie's acceptance of her disability and her enthusiasm for riding is an inspiration to anyone who meets her. Her award came after competing in just 5 other shows.

What's important about her success is that she, like all kids with TM, needed to find some recreational outlet, a sport she could compete well in. To be able to successfully ride and show her horse has become a very important part of her life. There are many activities and sports our kids can do even with decreased abilities to ambulate. For her, horseback riding is something she can compete in with anyone. You cannot see her disability when she is in the saddle. She's now beginning to take her horse over jumps. She reports that she loves the feeling of flying over obstacles. I can see the joy on her face when she and her horse are galloping. She's found a way to run! Katie may not have become such a talented rider if she had not gotten TM.

Please, don't misunderstand. I grieve daily for her losses and know there are plenty of difficult times ahead. Being different isn't easy. I don't romanticize this adversity. I don't believe she got this because we could handle it. Sometimes, maybe often, I don't handle it. Instead, I'm tired and angry and afraid for her. But she's tough and strong and unafraid. She is surviving TM very nicely. In fact, she's thriving in spite of it with a little help from her horse.

Katie's story represents one among a growing number of children in our Association who have been diagnosed with TM. The Association recognizes that children have special needs that are different in many ways from those experienced by adults with TM. In order to better serve our membership, the Association needs to learn more about our members; the first survey was the beginning of that process. A frequent request made of the Association comes from parents who are seeking out other parents who have children with TM. Often, parents are also looking for other children who are of similar age and who have similar experiences as their own child so that they might correspond with each other. We would like to facilitate this network for parents of children with TM. We will publish a separate directory that lists the same information that is found in our Association's membership directory, only with the addition of the names and ages of the children who have TM. We will only distribute this directory to parents who have a child with TM and who provide the information for inclusion in the directory. The information can be reported to the Association on the form that is included in this newsletter. SJS

Breaking news... Deanne Gilmur throws away all of her yellow legal pads and purchases computer.

Deanne can now be reached through e-mail at: dgilmurtma[AT SIGN]aol.com

Local Support for Persons with TM: Transverse Myelitis Support Group in Norfolk, Virginia

My son was transferred to the Richmond Crippled Children's Hospital where he was to undergo extensive rehabilitation. During the first month of rehab, he showed signs of his toes moving. We were told that it was muscle spasms. He was progressing daily and was having more movement in his feet and legs. By the end of the two month stay, he was able to walk with KAFO and forearm crutches. The next hurdle he endured was his bladder not functioning properly. He had a bladder augmentation. The surgery was successful, but he started at ground zero with rehabilitation. He has entered Sub-Acute Rehabilitation twice because of severe weakness. Today he is up and ready to challenge the world.

My motivation for starting this support group is to help others going through what we went through. We want to make a difference helping others ease their pain. It took me eight years to start this support group. I was too angry and was trying to put the blame on someone for what my son went through and for what he is going through on a daily basis. Our goal through this support group is AWARENESS.

We welcome any suggestions and encourage people to contact the TMA. We encourage everyone who has TM to fill out the survey and return it to Sandy. We need doctors to know more about this syndrome, what it does, and the effects it has on people.

Pam Ramsay
Transverse Myelitis Support Group Hotline (757)858-8191
Valtine88[AT SIGN]aol.com

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The Association was very pleased when Pam contacted us about starting a local TM support group in her community. Pam was very clear that she wanted to be there for people who were going through the difficult experiences that she, her family and her son endured with TM. We were excited about Pam's interest, because we desperately need for people to find each other and assist each other on the local level. That is the primary purpose for the distribution of the membership directory and its organization by state and country. There is a great deal the TMA can do to support and assist our members. But there is a great deal that you can do for each other, and perhaps more efficiently and effectively. The most frequently requested information we get from our members concerns a referral to a neurologist who specializes in TM. Our answer is that no one specializes in TM at this time. We encourage people to contact the persons with TM who live in their area and to share information and experiences about the neurologists they are using. It has to be of some benefit for both the physician and for the persons with TM to be seeing a doctor who has broader experiences with the condition. If people from a community are able to share this information with each other, they may be able to enrich the experiences of a neurologist who can, in turn, employ these experiences to help his or her patients more knowledgeably and effectively.

There is also a great benefit to be gained through the sharing of information and experiences at the community level. Each local and state government has a unique set of agencies, with unique rules and procedures. There is a great opportunity available for everyone when you share this information with each other. Most of you have had to find this information for yourselves, including everything from social service agencies and the services they make available, good rehabilitation hospitals or clinics, physiatrists and other medical specialists, good sources of adaptive equipment, references to physical and occupational therapists, to information about accessibility issues and employment opportunities. There are people in your communities who have had to educate themselves in most of these areas. You can learn from each other and greatly assist others who must learn it for the first time. You are all the most valuable resources for each other.

It requires someone to come forward and to make a commitment to organize the group. As I have learned in the past four years in the TMA, it is an enormous commitment and responsibility. But there is an enormous reward for the efforts. The first time you talk to a person who has been newly diagnosed with TM, and are able to share all of the information you have about TM, about the TMIC and the TMA, about the services and assistance available in your community -- and when you experience their relief that they are not alone, and their gratitude for your being there for them, you will never question the value of your commitment to your support group.

We are very excited for Pam and wish her well in her efforts with the Transverse Myelitis Support Group of Norfolk, Virginia. If you live near Norfolk, please contact Pam to get involved in the Group. If you are interested in starting a support group in your community, please contact the TMA and we will assist you in any way we can. We also encourage you to volunteer to be one of the TMA State or Country Representatives. We urge you to get involved. SJS

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Deborah Capen,
Secretary of The Transverse Myelitis Association

I am Deborah Capen, the Secretary of The Transverse Myelitis Association. My personal experience with TM has shown me that there is a lot of frustration associated with it, along with new physical disabilities that one must learn to cope.

I am 46 years old with no past health problems. My children are all grown, so now the immediate family consists of just my husband and myself. I maintain three businesses in two states which demands a very active lifestyle and includes a lot of traveling. On December 30, 1996, we were flying from California to Miami. While on our first layover at the Minneapolis airport, I began having terrible cramping pain in the backs of my legs. Over a period of 1 1/2 hours, I went from painful walking to not being able to take a step forward, to not being able to stand up. I became paralyzed from the waist down.

I had been involved in a single-car rollover accident on December 15, with no obvious injuries at the time. So when I was taken to the first hospital, that was mentioned to medical personnel as a possible cause of the sudden paralysis. Based upon a quick examination, it was determined that my paralysis was not accident-related, but neurological. The doctors admitted that they were not experienced enough in neurological problems, so I was taken by ambulance to the Neurological Trauma Center in downtown Minneapolis. I was admitted immediately with an initial diagnosis of possible Gullian-Barre Syndrome. Tests performed on me included MRI's, spinal tap, electrical impulse tests on my legs, blood tests, and more blood tests. Along with aggressive testing, I was started on IV steroid treatments. After a few days, the new diagnosis was Transverse Myelitis, with a lesion at the L-2 level. My body's response to the steroid treatments was almost immediate. The first morning after the steroids, I could just barely wiggle the big toe on my right foot. At that time, it seemed like such a major accomplishment. Each day there was a bit more improvement. By day four, I was started in rehabilitation and physical therapy. That was the first time I could stand with a walker.

My daughters had flown in from Detroit to stay with me at the hospital. They are all involved in the medical field, so the hospital was very accommodating. When I took my first step, they all applauded. I have had positive support from all of my family from the very beginning. I believe that has been a major factor in my healing process.

Although the doctors were able to diagnose the Transverse Myelitis, they were not able to tell me why I got it. Each doctor has had a different opinion as to how long I would live with the problems associated with TM.

I was released from the hospital 8 days later to fly back home to California. I left with a walker, a week's supply of pain pills, a booklet on how to self-catheterize, and many, many questions.

Through close friends and a lot of research, I was referred to an excellent neurologist. He is very experienced in spinal cord illnesses, and has worked with me to find the perfect balance of medications and treatments. Through the Internet, I discovered the Transverse Myelitis Internet Club, an excellent support group for TM "victims" that was started by Jim Lubin. Ultimately, my search led me to The Transverse Myelitis Association.

I have learned that there are so many different "theories" concerning the cause and prognosis of TM. In speaking to many of you, I have realized that there is so little known about spinal cord illnesses, and that a lot of doctors are "groping in the dark," when treating TM patients.

It has been a year since I was diagnosed. In the first two months, I noticed almost daily improvement. Then my progress slowed, and I had to note my improvement on a monthly basis. I have gone from walking with the aid of a walker, to walking with a cane. I now only need the cane on days that are a little stressful, or when I am pushing myself too hard. My doctor told me that my worst enemies are "stress and fatigue." There are days that I can walk with hardly a limp; then sometimes I can barely keep balance to walk at all.

I am back to traveling in business, however, the physical activity is still somewhat limited. My energies are now geared toward staying in the office, and "delegating" the work that I cannot physically handle. There have been bad, painful periods, and with the help of my husband and friends, I have gotten through the bad times.

There are so many people in the world that are being diagnosed with Transverse Myelitis, and I know how they feel. They have never heard of this rare disorder, want to know "Why Me?," and for some of them, there may be little improvement in their new disabilities.

The Transverse Myelitis Association has been formed to help those of us with TM gain a bit more knowledge of our disorder; to know that we are not alone. I hope that my administrative skills will be of benefit to the TMA - that together as a team we can accomplish the goals that have been set.

If anybody would like to contact me, I would be very happy to talk to you. I can be reached on the Internet via e-mail at <dcapen[AT SIGN]ivic.net>. You can also write or call me at the numbers listed on the back of this newsletter.

Paula Lazzeri,
Treasurer of The Transverse Myelitis Association

October 25, 1979. I was 12 years old and at a Halloween party. I had a bad back ache and decided to go to bed early. When I woke up in the morning, the back ache was still there so my friend's Mom took me home. Once home my Mom tried a heating pad on my back. But once again the ache just wouldn't go away. So my Mom and Dad took me to the emergency room. They checked me over, X-rayed me and sent me home with the diagnosis of a pinched nerve.

By the time I got home, my balance was getting pretty bad. As I walked through my house, my knees would buckle and I barely had enough strength to get up. Feeling very weak, I laid down in front of the TV with my siblings. While there I fell asleep. I felt this wave of paralysis go from my feet to my neck. When I awoke, my mother was telling me to go to bed. I laid there and said "I can't Momma, I can't move". This was early evening about 7:00 PM.

The doctors were shocked to see me again in the emergency room paralyzed from my neck down. I could move my arms a little. I was effected at the C6-7 level. I was put through all the tests. About a month post onset, I was diagnosed with Transverse Myelitis and moved to a Children's Hospital where I underwent intensive physical and occupational therapy. After 4 months of Children's Hospital, I was released to go home. I was able to regain most of the use of my hands. The fine motor skills are still tough. They have since moved the level of my paralysis to T-1. I can feel everything from T-1 down but pain and temperature. My legs feel numb and tingly. I use a wheelchair 100% of my day.

I was never given steroids. I don't know if they were giving them that long ago. I'm now 31. It hasn't stopped me much. My family has always been very encouraging and supportive. I made it through college, have worked as a tax accountant for the past 9 years, am married now for 11 years, and have a 5 year old son. Unfortunately, I've also had cysts, a collapsed lung, 3 full spinal fusions, broken tailbone, broken femur, many bladder infections, and skin breakdowns. Quite the busy life.

Thanks,