TM Support Group of New York
Pam Schechter

Since the publication of the last Transverse Myelitis newsletter, the New York Support Group, which focuses on Transverse Myelitis awareness and education, held its milestone meeting, the tenth on August 23, 2003 and the eleventh on January 24, 2004. We hold our meetings at Ben’s Delicatessen and Restaurant in Bayside, Queens, because the location is in a shopping mall adjacent to a major highway and is accessible to members who live outside the city.

Our anniversary meeting, the tenth, was chaired by Paula Goldstein, C.S.W. who is a licensed social work practitioner. She is currently group coordinator at the Center For Coping, which offers individual and group counseling and teaches coping skills to help people deal with a variety of medical problems, stress, family problems, or other difficult life situations. She is also the director of patient services for the Long Island/Queens Chapter of the Lupus Foundation. She specializes in working with people with chronic medical conditions and is a frequent guest speaker for many organizations. She is the co-author of several books, including “Coping With Breast Cancer” and “Successful Living With Breast Cancer,” published in 1999 and 2002, respectively. Because of her impressive credentials and experience, we were delighted that Ms. Goldstein had kindly consented to be the principle speaker and to lead the discussion at the meeting.

At the beginning of the meeting, Ms. Goldstein distributed handouts to the members and their guests. It was entitled, “Coping With Transverse Myelitis” and listed fifteen statements as points of discussion during the meeting. Ms. Goldstein based the statements on her prior professional experience with treating people with chronic illnesses. Some of the statements discussed included: every person deals with Transverse Myelitis (TM) in the same way (this statement generated a very lively discussion that ranged from outright opposition to, surprisingly, some members who agreed with it. Other statements that led to spirited discussions included: once diagnosed with TM, people can resume some of their regular physical activities without any problems; everyone with Transverse Myelitis complains about fatigue; family members are usually able to take TM in stride; although nutrition is important, there is no diet that helps people with TM; for people with TM, coping strategies must be used consistently, and finally, people are still afraid to work with a mental health professional to deal with problems.

From this diverse mix of controversial statements (selected by Ms. Goldstein), the ensuing discussions provided the members and their guests with a forum to dispute or agree with each one based on their own personal experiences. As the meeting progressed and the discussions intensified, Ms. Goldstein listened carefully to the members who contributed their thoughts and feelings and she made many perceptive and supportive comments when appropriate. At the conclusion, the members agreed that the meeting was a productive, insightful and supportive session and members looked forward to similar support sessions.

On January 24, 2004, Mr. Richard Sabel was our principle speaker and discussed a wide range of comprehensive alternative, as well as conventional and traditional methods to physical therapy and rehabilitation for individuals with spinal cord involvement. Mr. Sabel holds an M.P.H. (Master of Public Health) and O.T.R. (Occupational Therapy and Rehabilitation), and is currently the Program Manager at Beth Israel’s inpatient rehabilitation program and is adjunct instructor at Long Island University, Division of Occupational Therapy. His approach included integrated western therapeutic practice with an eastern philosophy for personal development, prevention and therapeutic function. This subject was of primary importance, because it provided a powerful broad-based method in addressing the mind-body-spirit connection that could alleviate some of the physical and mental pressures of TM.

Additionally, Mr. Sabel lectured on integrative rehabilitation, restorative yoga and breathing exercises as a means to promote the occupational performance and functioning of the members. Halfway through his lecture, Mr. Sabel commenced a series of exercises for the members to perform while seated that included body movements of arms, legs and torso, deep breathing and other exercises to promote serenity and a feeling of well-being. The consensus of the members and their guests was unanimous: they felt better mentally and physically. At the end of the meeting, they recommended that we invite Mr. Sabel to return at a future time.