Women's Support Group
In 1991, Mount Sinai Hospital invited women in the New York region who had sustained any kind of brain injury to attend a meeting to assess whether women's issues after brain injury were the same or distinct from those of men. (By “brain injury” we mean traumatic brain injury, stroke, aneurysm, AVM or anoxia). A standing-room-only group gave voice to issues too often shared in isolation, concluding that many of the challenges that women face after brain injury are different from those of men and are often unheard and under-served. The Women's Support Group (WSG) at Mount Sinai began that night.
I was lucky enough to be in the room on that auspicious day. I had survived a hemorrhage from an arterial venous malformation and brain surgery in 1990, and in 1996 I joined the Brain Injury Research Center of Mount Sinai.
More than two decades after the WSG started, our monthly meeting still provides a place where women freely express challenges they experience after brain injury, learn strategies to compensate for them, discuss cognitive and emotional changes, and receive information about progress in the field of brain injury treatment and research. I co-lead the group with a postdoctoral fellow in neuropsychology, with expertise in brain injury.
The Focus of the Women’s Support Group
In the Mount Sinai WSG, we often cover one or more of "The Big Five" issues resulting from brain injuries:
- Memory impairment
- Attention and concentration difficulties
- Sleep difficulties
How Our Meeting Works
At the beginning of each WSG meeting, the leaders present an issue that is challenging to many people with brain injury. For instance, recently we discussed “Sleep: Too much, not enough, or never at the right time?”
We began by discussing the sleep difficulties people in the room have experienced, describing the effect such problems have on our functioning. With the challenge defined, the co-leaders introduced ways to recognize, reduce, compensate or avoid encountering these sleep difficulties. As the discussion unfolded, the reaction in the room was excitement as we identified methods to reduce sleep problems that plague many of us.
Our discussion of “The Big Five” has led us to explore many related issues:
- Executive dysfunction
- Organization and task completion
- 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, women who attend the WSG must be prepared to work. Because the discussions can trigger strong emotional responses, participants should be aware of that possibility. People best suited to benefit from the WSG are not there to tell their story again. Rather, participants should be prepared to do the work necessary to make positive changes in their lives. This often requires note-taking and other compensatory strategies, since the WSG builds on skills learned from one session to another.
If You Are Interested in Joining the WSG
If you are interested in joining the WSG, we ask you to keep a log for four days, taking notes on aspects of your post-brain injury daily life such as fatigue, memory, mood, concentration, sleep needs, anxiety, anger, crying, physical activity, social outlets, contact with friends/family, and how you spend your weekdays and weekends.
After you have completed this inventory, we can set up a 1-2 hour meeting at Mount Sinai to review in detail the issues and challenges that you are experiencing since your brain injury. At the meeting’s conclusion, we will be able to more effectively direct you to services at Mount Sinai to provide help with recovery from TBI, including participation in the WSG.
To set up a meeting, call me (Seton Melvin, co-leader of the group) at 212-241-5010. Leave a message including:
- A phone number and the best times to reach you when you can speak privately (between 9am-5pm Eastern Standard Time)
- The type of brain injury you have sustained and the date on which it occurred
- Treatment and therapies you have engaged in and where
I will call you as soon as possible thereafter.
I look forward to hearing from you.
Co-leader, Women’s Support Group
Brain Injury Research Center of Mount Sinai
Icahn School of Medicine at Mount Sinai
5 East 98th Street, B-13
New York, NY 10029