The Maryland / DC Area Support Group

My name is Kelly Connor and this is the story of the first meeting of the TM support group for the MD/DC area, as well as our story of Transverse Myelitis.

The story is actually about my husband, Alan, who developed TM on October 8, 1999. We were on a plane heading to our first trip to Disney World with our two younger daughters. We gave each other a "high five," as the plane was taking off, because we had saved $150 dollars by not having purchased vacation insurance through the travel agent.

Shortly after take-off, Alan complained of neck pain. We blamed it on the take-off and I gave him Ibuprofen. The pain never really went away all day, but it was bearable. We saw the Animal Kingdom and then later went to the hotel pool. By 9:00 that evening, he had left arm numbness and was feeling exhausted. We blamed the numbness on the neck pain and the fatigue on the fact that we had been up since 4 AM. So, we went to bed. At 11:00 PM, Alan woke me, because he could barely walk on his way back from the bathroom. I called 911 and he was taken to a small community hospital where he was diagnosed with Guillian-Barre.

I breathed a sigh of relief because I knew that Guillian-Barre could get serious but is reversible. By 3:00 AM his respiratory function deteriorated and it became necessary to intubate him. He was placed on a ventilator and transferred to a larger hospital in the Neuro ICU. He was paralyzed from the neck down and had sensory deficit from the shoulders down. He could tell he was being touched, but could not tell if it was hot or cold, sharp or dull. He was only intubated for three days; no one will ever be able to convince me that high dose steroid therapy is not the reason he is not on a ventilator permanently. He had the battery of tests and on the fifth day we got the diagnosis of Transverse Myelitis.

Alan spent the next six days in this unit. Everyone there said that he would be okay. I knew nothing about TM at the time. We had never even heard of it. So, I took their word for it. The social worker there arranged for an air ambulance to get us back to Baltimore to Johns Hopkins Hospital. We were not moved to be at the TM Center; we are from Baltimore and I work at Hopkins. After we arrived at Johns Hopkins, we found out about the TM Center. This is also when I truly learned what TM was and how completely it can affect a person. Alan was put through tests and the diagnosis of TM was confirmed. After seven days at Johns Hopkins, he was transferred to a great rehab center.

The first day of rehab was the first day we even remotely began to relax. When we got there, the nurse said, "Did you bring shorts and tennis shoes? That hospital gown is coming off; you're in rehab now, honey." With physical and occupational therapy, a great team of nurses and doctors, Alan went from barely tolerating sitting in a chair with head support to walking with Canadian crutches in four weeks time.

He had to learn self-intermittent catheterization and learn a bowel regimen. Once Alan returned home, it was yet another adjustment to life with limitations. He turned 40 while he was in rehab and had been very active up to this point. He continued with outpatient PT and is now able to walk short distances with a cane. He uses a wheelchair for long distances. He has been able to continue to do a lot of the things that bring him joy and happiness. He has become a stay- at-home Dad and really has enjoyed being with the girls and they have loved having him at home. Needless to say, we lost all of the vacation and it was non-refundable, because we did not buy the insurance. We decided we would not "high five" about things; we are convinced something saw us do it and said, "so, you think you are so smart."

I have always wanted to get involved in a support group, but Alan was just not ready to face the reality of this condition being permanent. So, we did nothing for a long time. We went to the TM Symposium in July 2001 and met some really wonderful people. We did have lunch with two couples we met about a year later and then after the next TMA newsletter arrived, we were ready to do something meaningful and productive for other people with TM.

I began by writing a short letter with a questionnaire to everyone in the TMA directory in the MD/DC area. I received several replies and then began to search out places to have the meetings. The final destination was a restaurant that had a small private dining area, which holds about 24 people.

The first meeting of the MD/DC Support Group for TM was held on March 29, 2003 at Snyder's Willow Grove restaurant. There were 12 members in attendance, seven with TM, and five family members. Of the seven members with TM, six were female and one male (this was Alan, he is always the only guy; we have three daughters). The ages ranged from 20 to 65 and the amount of time with the disease ranged from 3 to 32 years. Five of the people had developed TM as adults and two were adolescents. Some people had a long hospital course and others have only been treated as an outpatient. Everyone brought their experiences to the table, some were familiar to everyone, and some were unique to each individual.

We used this first meeting to get to know one another. We also discussed how often to meet, where and when to meet, and what topics people were interested in hearing and learning about. We decided to meet three times per year. The group liked the location, which is central to everyone, so we will return to Snyder's for the next meeting. Some of the topics people wanted to hear more about were: stem cell research, what happens as a person with TM grows older, are there ways to improve physically with TM and are there ways to improve sexual function. We took a group photo and after all was said and done, we said our goodbyes and left in about five different directions.

I cannot wait until the next meeting. There is a sense of kinship when you are sharing experiences with people who not only empathize with you, but also really know what you are feeling. I would like to extend an invitation to anyone in the area to join us. There is no obligation, no fees (except the cost of your lunch) and, hopefully, you will come away with more knowledge about your disease and make a few friends in the process. Please feel free to contact me at: kac61[AT SIGN]cablespeed.com or (410) 766-0446.

You can also contact Janice Yoder at: carly[AT SIGN]chesapeake.net
or (410)326-4016.

Please check out our web page that Jim has designed (Thanks, Jim) on the TMA web site. First click on the support group link and then click on the MD/DC link. We will post summaries for those of you who are unable to attend the meetings. We will also post meeting dates, times and locations for future meetings.