If you have dysphagia or are close to someone with a swallowing issue, you don’t have to go 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 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. They were planned about 2 months in advance, held on a Saturday, and lasted 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 friend’s faced every hour of every day.
Based on the positive outcome of our support groups, the NFOSD has made one of its three major initiatives for 2013 the 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 – Encinitas
Lisa Udwin, MA CCC-SLP
– Lisa Udwin Dysphagia & Communication Services
– 700 Garden View Ct., Ste 201A,Encinitas,CA 92024
Email Lisa directly for the date and time of the next support group meeting
California – San Diego
Liza Blumenfeld, MA CCC-SLP, BRS-S
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, MA, CCC-SLP, AAC Specialist
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
Allison Remley, M.S., CCC-SLP (Speech Language Pathologist)
Phone: 573-335-2086 Ext 38
Meeting location: Life Care Centers of America at Cape Girardeau
Address: 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, MA CCC-SLP
Vital Stim and NOMAS certified; working on BRS-S
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
Sharon Beaumont-Bowman, SLP.D,CCC, BRS-S
Meeting Location: Challenge Early Intervention Center – 649 39th Street, Brooklyn, NY 11232; Phone (718) 851-3300 (Note, this center generously provides the space, parents do not need to be affiliated with Challenge to attend the group.)
Meeting schedule: Generally meets on the third Monday of each month from 9:30 to 11:30 AM. It is important to confirm meeting date and time with Sharon as this could change. For example, the third Monday in January 2013 is a holiday. As such, the meeting has been moved to the fourth Monday in January.
Important: This swallowing support group is focused on parents who are caring for a young child with a swallowing disorder. Sharon is considering starting a group focused on the adult dysphagia patient. If you fall into the “adult” category, please email or call Sharon and let her know of your interest.
New York – Buffalo
Laura Roberts, MS., CCC-SLP; BRS-S
Email: Laura at firstname.lastname@example.org
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
Meeting Location: The Osborn Senior Living – 101 Theall Rd, Rye, NY 10580; Phone (914) 921-2200. (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.)
Meeting schedule: The initial meeting is in the planning stages as of August 2014. Please email Kathy Kennard-MacKenzie for specifics on the first meeting date and time.
Osborn website: http://www.theosborn.org/
Texas – Houston
Brad Smith, MS, CCC-SLP (Speech Language Pathologist)
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, Ph.D., Professor; Erin Kamarunas, Ph.D., CCC-SLP
Email: Erin Kamarunas
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
Jan Pryor, MA CCC-SLP,BRS-S
Yumi Sumida, MFA MS CCC-SLP
Speech Pathology Clinical Specialist
Voice and Swallowing Specialty Clinic
Harborview Medical Center
Meeting date and time to be determined based on patient interest
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 – 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.