New York State Support Group Meetings

The New York State Support Group, which focuses on Transverse Myelitis awareness and education, held its eight and ninth luncheon and support group meetings on November 16, 2002 and March 29, 2003 at Ben's Delicatessen and Restaurant in Bayside, Queens.

We hold our meetings at this restaurant, because it is centrally located and adjacent to a major highway in a large, well-known shopping mall. It is accessible to those members who live outside the city. The attendees of both meetings included members, families and friends and numbered about twenty-two to twenty-four persons. Some of the members came from Long Island, Westchester County, New Jersey, as well as New York City.

The meeting on November 16, 2002 was again chaired by Dr. Hope Klopchin, who in the past year obtained her Ph.D. in counseling psychology from the State University at Buffalo. She is a licensed psychologist who specializes in medical and health psychology. Dr. Klopchin led the group in the very important issue of "Stress Management" and as it relates to having Transverse Myelitis. Discovering how to manage stress can enable the members to better handle life's demands, bring more satisfaction and success in their lives, and help them function in a more productive manner. The strategies discussed at the meeting could help members to achieve a better quality of life.

Dr. Klopchin first emphasized the importance of recognizing signs of stress which can be both emotional and physical. Some of the emotional symptoms of stress include anxiety, anger, confusion, frustration and depression. Physical signs of stress include exhaustion, fatigue, pain and energy loss. She explained that illness and disability are some of the most stressful events that we can experience in our lives. A noteworthy point Dr. Klopchin made concerned the everyday stresses that are associated with the environment (inadequate accommodations, inadequate family support, negative attitudes, exclusion/isolation and unaffordable costs for needed services). Dr. Klopchin discussed family relationships, how family may express their feelings about the illness, and how the illness affects the relationship between you and your family. She also said that projecting negative attitudes about ourselves (loss of self-concept/esteem) affects how others view us and feel about us. She further discussed what she called a "Negative Head Set" or unhelpful thinking and she distributed a document which listed some of the negative thinking we indulge in, such as thinking of past events and feeling it difficult to shift to the present; feeling our difficulties are hopeless which fosters inactivity; having a tendency to blow events out of proportion and over-interpret situations when we don't have all the information.

The discussion finally progressed to the use of "coping mechanisms" in dealing with the stressors of illness and disability. One of the members suggested that we think about all the things we can still do and experience. Dr. Klopchin suggested that this is a healthy way to reaffirm and redefine your identity and will lead to positive affirmations about accomplishments and qualities. The discussion then centered on short-term and long-term, stress-reduction tactics.

Dr. Klopchin distributed a quality of life pamphlet called "Coping With Disability Related Stress." As quoted from the pamphlet, some of the helpful hints to reduce stress quickly include: concentration/focusing, cooking, craft projects, deep muscle relaxation, deep breathing, laughter, movies and popcorn, prayer, reading, newspaper therapy (comics, crossword puzzles, etc), talking to a friend, writing (e.g., a poem or story). Long-term, stress-reduction strategies are used for weeks, months or years. Some helpful hints to reduce stress today and years from now for individuals and their families include advocacy and assertiveness, close relationships, counseling (individual/group), exercising regularly, future planning, healthy life habits (e.g., diet, sleep, moderation), leisure, hobbies, networking with peers, positive attitudes, support groups, socializing, travel and vacations.

At the meeting on March 29, 2003, Ms. Carrie Schauer provided a presentation on the importance of rehabilitation and physical therapy in relation to neuro-muscular disorders such as Transverse Myelitis. Ms. Schauer has a B.S. in physical therapy from Hunter College, a M.S. in physical therapy from Touro College, where she teaches several courses in rehabilitation and physical therapy, and is affiliated with the Department of Rehabilitation Medicine at Mount Sinai Medical Center in New York City.

Ms. Schauer introduced the discussion with a basic overview of Transverse Myelitis. She talked about the role of the physical therapist in managing some of the complications of Transverse Myelitis, which include spasticity, skin issues, flexibility, pain and muscular weakness in arms and legs. She discussed the issues of functional independence, which include bed mobility, ambulation, wheelchair mobility, stairs, everyday tasks (i.e., driving and cleaning) and wheelchair seating and positioning. She presented intervention therapies used for strengthening, stretching, balance, coordination, gait assessment, wheelchair issues, patient and family education and home exercise programs.

Ms. Schauer then discussed what she called "Team Approach" which employed the use of occupational therapy, vocational therapy and mental health care professionals. The occupational therapy approach helps patients learn new ways of performing meaningful, self-directed, goal-oriented, everyday life tasks such as bathing, dressing, house cleaning, and engaging in arts and crafts. The therapists teach people how to develop compensatory strategies, how to make changes in their homes to improve safety and how to change obstacles in their environment that interfere with normal activity. Vocational therapists help develop and promote work skills, identify potential employers, help in job searches and act as mediators to secure reasonable workplace accommodations. Mental health care professionals can help with depression by providing a wide range of medications together with psychotherapeutic treatment. Ms. Schauer also discussed alternative therapy approaches, such as Tai Chi and Qigong. She explained that Tai Chi is a martial arts specializing in maintaining mental and physical balance. Qigong is a system of yoga encompassing physical, mental and spiritual practice aimed at quieting the mind. Another approach is called "The Feldenkrais Method" which teaches awareness through "movement lessons."

During a question and answer period, Ms. Schauer was asked about fatigue resulting from physical therapy. Ms. Schauer suggested that you increase your therapy in small increments so as to avoid doing "too much" and practice energy-conservation techniques. She also suggested ways to improve strength and energy by proper diet, enough rest, relaxation, and healthy life-style, all of which help to maintain the rehabilitation process.

For the next meeting of the NY support group, we are going to invite a therapist practitioner of "Alternative Approaches" to physical therapy.

Pamela Schechter