Women's Support Group

By Seton Melvin, Co-leader

In 1991, The Mount Sinai Hospital invited women in the New York region who had sustained any kind of brain injury, for example, traumatic brain injury, stroke, aneurysm, AVM, anoxia and the like, to attend a meeting with the objective to assess whether women's issues after brain injury were the same or distinct from those of men. A standing room only group gave voice to issues they had shared in isolation, expressing that female needs after TBI were distinctly different from the needs of men and often went unheard or were under served. The Women's Support Group (WSG) at Mount Sinai began that night. Two decades later, the popular monthly meeting provides a place where women freely express challenges after brain injury, learn strategies to compensate for them, discuss cognitive and emotional changes, and receive information about progress in the TBI field.

I was lucky enough to be in the room on that auspicious day in 1991, having had a hemorrhage from an arterial venous malformation and brain surgery in 1990, and joined the Brain Injury Research Center in 1996. In the intervening years, great advances have been made in treatment therapies for brain injury, allowing millions of people to live more integrated, productive lives. Mount Sinai provides a support group for women with brain injuries co-led by me and a Post-Doctoral Fellow specializing in treatment and recovery from the consequences of brain injury.

In the Mount Sinai WSG, we often cover one or more of "The Big Five" issues resulting from brain injuries:

• Memory Impairment
• Fatigue
• Attention and Concentration Difficulties
• Depression
• Sleep Difficulties

At the beginning of each WSG meeting, I present an issue that is challenging to many people with TBI's. A recent topic we discussed was: SLEEP: Too much, not enough, never at the right time? We started by discussing the sleep difficulties people might have post-TBI and describing the effect such problems have on their functioning. After we defined the challenge, the co-leaders introduced ways to recognize, reduce, compensate or avoid encountering sleep difficulties. As the discussion unfolded, the reaction in the room was positive, as we identified methods to reduce one kind of the negative impact of brain injury.

Our discussion of “The Big Five” has led us to explore many challenging issues, such as:

• Anxiety
• Executive dysfunction
• Organization and task completion
• Relationships
• Rapid changes in mood
• Impulsivity- Acting before considering or despite adverse consequences
• Sensitivity to stimuli, for example, light, noise, odor
• Disorganization and clutter
• Volunteering- A step back to work without job risk
• Isolation – The Pros and Cons
• Procrastination – The lack of initiation and difficulty getting started

Given the importance of these issues in our lives and the discussions that follow, people who attend the WSG must be prepared to work. Discussions can trigger strong emotional responses. People best suited to benefit from the WSG are not there simply to tell their story again. Participants should be prepared to do the work necessary to make positive changes in their lives. This often requires note-taking and other compensatory functions since the WSG builds on skills learned from one session to another.

What to Expect After You Call

When women express interest in joining the WSG, they are given the assignment to keep a log for four days, commenting on many aspects of their lives post-TBI, for example, fatigue, memory, depression, concentration, sleep needs, anxiety, anger, crying, physical activity, social outlets, contact with friends/family, and how they spend their days and weekends.

After keeping the log they bring it to a meeting with me. Discussion of their record allows me to assess challenges they may be experiencing, and gives them a more concise picture of what changes may have occurred post-brain injury. By the end of our discussion, I can more effectively direct them to services Mount Sinai provides to help with their recovery from TBI. This may include participation in the WSG.

If you are interested in finding more out about the group, please call me at 212- 241-5010 and leave a message, including:

• • The best number to reach you (just one) and when
  • The date and type of brain injury you sustained
  • Treatment or therapies you have engaged in

I look forward to hearing from you.

Seton Melvin

Co-leader, Women's Support Group
Brain Injury Research Center
Icahn School of Medicine at Mount Sinai
5 E. 98th Street B-13
New York, NY 10029
212-241-5010