New York State Support Group Meetings

Transverse Myelitis Association
Volume 5 Issue 1
December 2002
Page 38

New York State Support Group Meetings
Pamela Schechter

Since the publication of the last TMA Newsletter in October 2001, we have planned and organized the sixth and seventh New York State Support Group meetings which were held respectively on November 8th, 2001 and June 22nd, 2002. As with prior meetings, they were held at Ben’s Delicatessen and Restaurant in the Bay Terrace Shopping Mall, Bayside Queens. The room we reserved at the restaurant provided us with the privacy and the time we needed (12noon to 4PM) to cover our general purpose and agenda.

Common to both meetings were the amount of attendees, which included members, families and friends, and totaled approximately twenty-two to twenty-four persons. They traveled from all parts of the metropolitan area including Long Island, Westchester County, New Jersey and New York City.

All areas were readily accessible to the restaurant. The sixth meeting on November 3rd, 2001, again was chaired by Ms. Hope Klopchin, our principle speaker and leader of group discussions. At the meeting, Ms. Klopchin was officially recognized as Dr. Hope Klopchin, having successfully completed her doctorate in counseling psychology at the State University, Buffalo, NY. This degree is a tribute to Dr. Hope Klopchin’s tenacity and courage, because she was afflicted with Transverse Myelitis at the age of twelve, went through a long recovery period and still managed to obtain this high academic degree.

The discussion centered on several themes, the most prominent theme concerned the stigma of having a disability and what the members thought having a disability meant to them before and after they developed Transverse Myelitis. We compared and contrasted the pre-conceived notions about how we felt about people with disabilities versus our current thoughts about the reality of our own disabilities from TM. An interesting question posed by Dr. Klopchin concerned the perceptions and thoughts we had about, for example, persons in wheelchairs, prior to our illness, did we feel that they were lonely, depressed, lacked self-esteem, were poorly dressed, etc. A lively discussion ensued and most members ran the gamut from all of the above, adding more to the list, to a more optimistic approach to those in wheelchairs. We also discussed the possibility that these pre-conceived notions may reflect a societal or cultural bias attached to being disabled.

We discussed the Americans With Disabilities Act of 1990 and how frustrating it was being disabled in a non-disabled world. For example, some of the members had attended the July 2001 2nd International Transverse Myelitis Symposium, co-sponsered by Johns Hopkins University Hospital and The Transverse Myelitis Association and held at the Holiday Inn Hotel in Baltimore, MD. The general opinion was that the hotel offered a number of amenities for the disabled, but fewer rooms that were handicapped-accessible were available to them. Other members who did not attend the symposium also related experiences of less than friendly accommodations for handicapped persons at restaurants and other public facilities.

We ended the meeting by distributing literature compiled by TM members Mrs. Vilma Mithchell and Ms. Susan Tilotta. Our special thanks to them for the wonderful job they did in collating the important information which was obtained from the Johns Hopkins website. Each attending member received a compilation of all the lectures and events that were presented at the symposium. We scheduled the next meeting for June, 2002.

At the seventh meeting, June 22nd, 2002, we were privileged to obtain as our principle speaker, Dr. Shariq Ali, Ph.D., Assistant Professor, Department of Pharmacology, Toxicology and Medicinal Chemistry, Long Island University, Brooklyn, NY. Dr. Ali’s credentials are impressive. He obtained a B.S. degree from Long Island University and Doctor of Philosophy degree in pharmacology from New York Medical College in 1999. Dr. Ali has done biomedical research at Mount Sinai School of Medicine. During his research career, Dr. Ali has published extensively in leading peer reviewed scientific journals.

Dr. Ali’s presentation was a basic and general overview of the common drugs that TM members use, the properties and possible interactions between the use of multiple drugs. He started the discussion by listing the possible causes of TM. They included viral infections, such as pneumonia, that may trigger an abnormal immune response leading to inflammation of the spinal cord. Other possible causes were vaccination as an example of a deficient immune response and another cause might be a lack of blood supply to the affected area causing inflammation. He stated that the causes of Transverse Myelitis can be idiopathic (unknown), as well. Dr. Ali briefly outlined some of the symptoms of TM which included weakness, pain, sensory alteration or bladder or bowel dysfunction. He explained that the first time therapy for an acute attack of TM was intravenous steroids. He stated that the problem with using steroids is that they decrease the immune response. Therefore, you are more prone to develop a secondary infection. He also discussed the risks versus the benefits of using this drug. Another drug used in acute TM is Immunoglobulin therapy. This treatment is usually reserved for patients that are responding poorly to steroids or recurring attacks. Dr. Ali discussed the use of Plasmapheresis. This is a treatment in which blood is taken out of the system, purified and put back in the system. The premise of using this treatment is to remove substances that cause inflammation. Other drugs used to treat TM include Neurontin, a drug that suppresses pain and tingling sensations. It helps with symptoms of neuropathic pain. He explained that anti-depressants are also used to relieve the symptoms of pain. Anti-convulsants, for example, Tegretol, are used for neuropathic pain and sometimes for spasticity.

Dr. Ali mentioned that a common side effect of anti-depressants was dizziness. There are a number of anti-anxiety drugs, such as Clonazepam, that are used to treat neuropathic pain. A drug called Baclofen is used to treat spasticity, a symptom of Transverse Myelitis. Other drugs used include, Ditropan, commonly used to control bladder dysfunction and Clonidine, a drug used for neuropathic pain.

The final portion of Dr. Ali’s discussion concerned new drugs being used for the treatment of TM. The most promising and prominent drug Dr. Ali mentioned was called Fampridine-Sr (4AP). He cautiously referred to the drug as a potential cure. According to Dr. Ali, the phase two clinical trials of Fampridine have been completed for chronic spinal injuries (which includes Transverse Myelitis and Multiple Sclerosis). Patients in these trials have shown marked improvements in a variety of functions, including decreased spasticity, improved sexual function and increased bladder and bowel control. Fampridine enhances conduction in damaged nerves and is the first compound that has shown to restore some neurological functions in patients with spinal cord injury. Dr. Ali described how it works. Fampridine predominantly blocks specialized potassium leaks from nerve axons. When the axon is demyelinated after injury, potassium channels are exposed and leak potassium resulting in short-circuitry of the axons. By blocking this leakage, Fampridine permits the axons to transmit nerve impulses again, even in the demyelinated state and restoring some neurological function. Dr. Ali’s explanation of how this drug works and what it can mean was received with extreme interest and enthusiasm by the attendees, because it offered them hope.

The final segment of Dr. Ali’s lecture was a cautionary warning about using Valium or Xanax, because these drugs can become habit-forming. However, Ambien, a drug which might be a good alternative to Valium or Xanax is not habit-forming.

After the meeting adjourned, Dr. Ali said that he would be pleased to serve in an advisory capacity for the New York State Transverse Myelitis Support Group and The Transverse Myelitis Association. His suggestion was welcomed by all. Both meetings were considered successful in providing important education and information and offering material for future discussions.

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