If you have dysphagia or are close to someone with a swallowing issue, you don’t have to go through it alone. A support group can help. (See list of active support groups below)
Support groups bring together people facing similar issues. Members of support groups often share experiences and advice. It can be helpful just getting to talk with other people who are in the same boat. While not everyone wants or needs support beyond that offered by family, friends, and their medical team you may find it helpful to turn to others outside your immediate circle. A dysphagia support group can help you cope better and feel less isolated as you make connections with others facing similar challenges. A support group shouldn’t replace your standard medical care, but it can provide hope and be a valuable additional resource.
The National Foundation of Swallowing Disorders (NFOSD) began its first dysphagia support group in 2010. The most recent meeting consisted of 20 people included dysphagia patients, caregivers, and a few students. It was co-lead by a Jan Pryor, a skilled speech language pathologist, and Sonia Blue, the former president of the NFOSD. The meeting kicked off with a group presentations and discussion and then split into smaller breakout sessions. Meetings are planned about 2 months in advance, held on a Saturday, and last about 2.5 hours.
Dysphagia patient feedback from the meeting included:
- Feeling less lonely, isolated, anxious, depressed, or judged
- Gaining a sense of empowerment and control
- Being able to talk openly and honestly about one’s feelings
- Getting practical advice or information about treatment and coping options
- Comparing notes about resources, such as doctors and alternative options
In addition, feedback from caregivers was in some ways even more powerful. There was a deeper understanding of the struggles and challenges their loved ones and friends faced every hour of every day.
Based on the positive outcome of our support groups, the NFOSD has continued to make one of its major initiatives for 2015 to build out of a nationwide network of support groups.
The following is a list of speech language pathologists who are welcoming those with swallowing issues (along with family and friends) to join them in future support group meetings. Their email address is provided. If you are interested in attending a meeting or just finding out more about the group, please contact the group leader directly. There is no fee to attend a support group.
California – San Diego
Phone: (858) 626-5059
Meeting Location: Scripps Memorial Hospital, La Jolla Voice and Swallowing Center
Next meeting is scheduled; email Liza for the date and time
Louisiana – Ferriday
Marilyn Truly West
Genesis Rehab; Heritage Manor Health and Rehab
Meeting Location: Heritage Manor Health and Rehab
Meeting date and time to be determined based on patient interest
Missouri – Cape Girardeau
Phone: 573-335-2086 Ext 38
Meeting location: Life Care Centers of America at Cape Girardeau
365 S. Broadview; Cape Girardeau, MO 63701
Next meeting to be scheduled; email Allison for the date and time and to confirm location
Ohio – Cleveland
Esther A. L. Verbovszky
Cleveland Feeding and Swallowing Center
Meeting Location: Cleveland Feeding and Swallowing Clinic
Next meeting is scheduled; email Esther for the date and time
New York – Brooklyn
Pediatric-Parents Meeting Location:
Challenge Early Intervention Center
649 39th Street, Brooklyn, NY 11232
Phone (718) 851-3300.
Meets third Monday of each month from 9:30 to 11:30 AM. Attendees need to confirm meeting date and time with Sharon as this could change.
Adult meeting location: Brooklyn College
2900 Bedford Avenue, Brooklyn NY 11210
Meetings are held quarterly; Fall, Winter, Spring, Summer. Please email to attend and be put on the mailing list.
New York – Buffalo
Email: Laura at firstname.lastname@example.org
Phone: (716) 878-5306
Meeting Location: Buffalo State College
Email Laura directly for the date and time of the next support group meeting
New York – Rye
Kathy Kennard-MacKenzie, MA, CCC/SLP
Direct phone: (914) 925-8274
101 Theall Rd, Rye, NY 10580
Meeting Location: The Osborn Senior Living (Note, the Osborn has generously provided this meeting space, patients and caregivers do not need to be affiliated (past or current) with the Osborn to attend this swallowing support group meeting.)
Schedule: 8 times a year on the first Tuesday of the month from 4:00-5:30 pm from Sept to December, February to May. Please contact Kathy Kennard-MacKenzie (above) to register.
The Osborn website: http://www.theosborn.org/
Texas – Houston
University of Texas MD Anderson Cancer Center
Please email Brad if interested in attending or for additional information. Meetng are being held monthly.
Virginia – Harrisonburg and Shenandoah Valley
Christy Ludlow & Erin Kamarunas
RMH Healthcare; Conference Room 1
2010 Health Campus Drive
Harrisonburg, VA 22801
Meetings are a collaborative effort between RMH Healthcare and James Madison University. They are scheduled for every other month on the second Wednesday of the month from 6:30 PM to 8:00 PM. Please call the number above for the date of the next meeting and to register to attend.
Washington – Seattle
UWMC Otolaryngology Clinic; 3rd Floor Waiting Room
1959 NE Pacific Street
Seattle, WA 98195
Meetings are held quarterly; Fall, Winter, Spring, Summer. Please email or call to attend and be put on the mailing list!
The following is a list of locations where speech language pathologists (SLPs) have expressed an interest in starting a support group. If you live near one of these areas and are interested in attending a support group, you can email us at email@example.com with your name, contact information, and location. We’ll pass this information onto the SLPs. When the SLP is ready to begin their support group, they will reach out to you with additional information.
California – Carmel
California – Encinitas
California – Sacramento
Colorado – Fort Collins
Kentucky – Louisville
Louisiana – Slidell
Oregon – Eugene
Utah – Salt Lake City
Wisconsin – Madison
Regardless of your location, if you are interested in being part of a support group, send us an email with your contact information and location. We have access to a nationwide network of speech language pathologists. If enough people are located in close proximity to each other, we’ll strive to establish a support group in your area. In addition, we are experimenting internally within our foundation with conducting online video chat support groups or allowing people to join into an existing support group over the Internet.
Lastly, if you are an SLP with an existing support group or have an interest in starting a dysphagia support group in your area, email us at firstname.lastname@example.org. We’d like to help you get the word out through the NFOSD website, Facebook, and other social media resources. Plus, we have flyers and other materials from prior support groups which can help you get your group started.