Thoughts of a Veteran Support Group Leader

Mary Buck, a retired physical therapist, has been with the Stroke Support Association of Long Beach, California, for 30 years. We talked with her about what works and what doesn’t when starting and maintaining a support group.




Mary Buck, a retired physical therapist, has been with the Stroke Support Association of Long Beach, California, for 30 years. For 10 years she functioned as director of the association and for the next 10 years she was coordinator of groups. Currently, she meets with the groups on an as-needed basis. We talked with her about what works and what doesn’t when starting and maintaining a support group.

Despite the natural impulse to want the group to be as large as possible, it’s always best to limit it to 12-15 participants. “Any more than that and everybody doesn’t have a chance to share and that’s what we are there for,” Mary said. The Long Beach group has an average of 40-50 attendees at each meeting, but they split into three groups – two for survivors and one for caregivers. Previously, they divided the survivor groups by age because younger survivors have different concerns than older survivors, such as jobs and children. However, they stopped doing that because the number of younger survivors dwindled.

The Long Beach group meets every Tuesday morning for 12 weeks in a row, then they take a month off. The membership of each sub-group is stable, in other words, the groups don’t usually intermingle. For the first time this year the stroke survivor groups and the caregiver group met together twice. Every 12-18 months they reconfigure the survivor groups. Meetings are primarily for survivors and caregivers to share their feelings, but one meeting each quarter is set aside for a speaker, and every two years a registered nurse gives a presentation about the causes and effects of stroke. They also have a couple of social events – a potluck picnic in August and a holiday party in December.

The quality of the group facilitators is another key ingredient for a successful group. Mary suggests using healthcare professionals like therapists, social workers, psychologists and nurses – people with experience leading a self-help group who are knowledgeable about stroke.

Some survivors may be great facilitators as well, but there are important things for them to keep in mind before taking on the responsibility. “We recently used a stroke survivor in the facilitator role,” she said, “and it did not work very well because as someone who had experienced stroke and recovery, he felt the need to comment on everything being shared by the participants. Facilitators don’t need to comment on everything that everybody says. Their job is to keep things moving and make sure everyone gets to share.”

To insure that new facilitators know what is expected of them, they have a full day training, then sit in with trained facilitators for several sessions. The facilitators also share among themselves what works and doesn’t work.

To recruit new members, group members attend health fairs and pass out brochures. They also provide speakers to community groups. In addition, they coordinate a peer visitor group with two local hospitals to send long-term survivors to visit new stroke patients. “We do a follow-up call with them to let them know we are here,” she said.Other important considerations for success are parking and room size. The Long Beach group started out in a hospital, but the parking was far away from the meeting room. Also there was not enough room to break into smaller groups. Now they meet at a church that has plenty of room and a parking lot near their meeting space. “Transportation is a huge issue in getting people to attend,” Mary said. They considered hiring a bus to transport people, but the liability issues were too daunting.

Mary was adamant that religion and politics always be avoided during group because people can too easily get riled up over those subjects. “Stroke families have enough to talk about without getting into that,” she said. “Stroke support groups are a safe place for survivors to share their feelings and gain the listening and acceptance they need.”

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Stroke Rehabilitation

Making the Best Decisions at Discharge After Stroke

The type of rehabilitation and support systems a survivor receives at discharge can strongly influence health outcomes and recovery. In this, the first part of a two-part series on stroke rehab, we offer guidance for the decision-making process required when it’s time to leave the hospital.

What to Expect from Outpatient Rehab

After stroke, about two-thirds of survivors receive some type of rehabilitation. Outpatient therapy may consist of Several types of therapy. Whether a patient is referred to inpatient or outpatient therapy depends on the level of medical care required.

What to Expect in Stroke Rehab

Following a stroke, about two-thirds of survivors receive some type rehabilitation. In this second of our two-part series, we want to alleviate some of the mystery, fear and anxiety around the inpatient rehab part of the stroke recovery journey.
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AHA-ASA Resources

The Support Network

When faced with challenges recovering from heart disease or stroke, it’s important to have emotional support. That is why we created a network to connect patients and loved ones with others during their journey.

Caregiver Guide to Stroke

The Caregiver Guide to Stroke is meant to help caregivers better navigate the recovery process and the financial and social implications of a stroke.

Stroke Support Group Finder

To find a group near you, simply enter your ZIP code and a mile radius. If your initial search does not pull up any groups, try

Tips for Daily Living Library

This volunteer-powered library gathers tips and ideas from stroke survivors, caregivers and healthcare professionals all over the country who’ve created or discovered adaptive and often innovative ways to get things done!

Stroke Family Warmline

The Warmline connects stroke survivors and their families with an ASA team member who can provide support, helpful information or just a listening ear.

Let's Talk About Stroke Patient Information Sheets

Let's Talk About Stroke is a series of downloadable patient information sheets, created by the American Stroke Association, that presents information in a question-and-answer format that's brief, easy to follow and easy to read.

Request Free Stroke Information Packets

Fill out this online form to request free information about a variety of post-stroke topics.
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Stroke & Parts of the Brain

When Stroke Affects the Occipital Lobe

Our occipital lobe, the smallest of the four lobes of the cerebral cortex, controls how we visually interpret our world.

When Stroke Affects the Cerebellum

The cerebellum contains 80 percent of our neurons. Its job seems to be to make things better. We talked with neuroscientist Jeremy Schmahmann about how stroke affects the “little brain.”

When Stroke Affects the Parietal Lobe

The parietal lobe helps us make sense of sensory information, like where our bodies and body parts are in space, our sense of touch, and the part of our vision that deals with the location of objects.

When Stroke Affects the Frontal Lobe

Of the four lobes that make up the cerebral cortex, the frontal lobe is the largest. It plays a huge role in many of the functions that make us human — memory, language, movement, judgment, abstract thinking.

When Stroke Affects the Temporal Lobe

The temporal lobe has several functions, mainly involved with memory, perception and language.

When Stroke Affects the Brain Stem

The brain stem serves as a bridge in the nervous system. It sits at the top of the spinal column in the center of the brain. When a stroke happens there, it can cause a few different deficits and, in the most severe cases, can lead to locked-in syndrome.

When Stroke Affects the Thalamus

The thalamus can be thought of as a "relay station," receiving signals from the brain’s outer regions (cerebral cortex), interpreting them, then sending them to other areas of the brain to complete their job.
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Departments

Stroke Notes

Stroke-related news you can use about new scientific findings, public policy, programs and resources.

Readers Room

Articles, poems and art submitted by stroke survivors and their loved ones.

Life Is Why

Everyone has a reason to live a longer, healthier life. These stroke survivors, caregivers and others share their 'whys'. We'd love for you to share yours, too!

Everyday Survival

Practical tips and advice for day-to day living after stroke.

Life At The Curb

A unique perspective on survival by comedian and stroke survivor John Kawie.

Simple Cooking

Cooking at home can be a daunting task, but a rewarding one for your diet and lifestyle (and your wallet). Making small changes in your diet is important to your heart health. Here are simple, healthy and affordable recipes and cooking tips.

Helping Others Understand

Stroke affects people differently and many of the effects of stroke can be complicated. Helping friends and family understand how a stroke is affecting a survivor can help everyone involved.

Support Showcase

Our new department highlighting the good work being done by stroke support groups from around the nation. If you are part of a successful support group we should consider featuring, let us know!