Epilepsy Talk

Adult Epilepsy Support Groups | May 20, 2011

One thing I’ve discovered is the search for support groups is endless — and seldom successful. Unless you live in a metropolitan area.

But, if you do find a support group, you’ll find an amazing wealth of camaraderie, compassion and caring.

Not every group does the same things. Even groups with similar activities may have different results because of the individuals involved…but think of it as a learning and bonding experience.

You’re interacting with people who share a similar illness, but perhaps different solutions. You can share your feelings, fears, concerns and perhaps get answers.

But most importantly, you can join a community of caring and know that you’re not alone.

To be honest, I’m trying to start my own support group and have found that a local hospital is thrilled with the prospect. So, that would be the best of all possible worlds, for me…

There would be an established place to meet, with some materials available. Plus, the opportunity to have guest speakers and ask questions. Fingers crossed! 

I know that starting a support group is definitely not for everyone. However, there are resources available where you can get the help – and materials – you need.

The Epilepsy Foundation is only too eager to help…affiliates provide information and referral assistance; maintain individual and family support services. To find one in your area simply enter your zip code, state and hit “search.” http://www.epilepsyfoundation.org/aboutus/Find-an-Affiliate.cfm

There’s another interesting group I found called “Epilepsy Meet-Up” where you can meet other local people with epilepsy. Friends and family members are also welcome. On the site, there’s an interactive map of Epilepsy Meet-Ups around the world. (And if you want to start or find a support group, this could be a good place to know about!) http://epilepsy.meetup.com/

“Add Coach” provides advice on how to start and run a support group. http://www.addcoach4u.com/support/howtostartasupportgro.html

Now, here’s a list of Epilepsy Support Groups across the country that I’ve compiled. Hopefully it will be of help.

And if you have any additions or suggestions, please, sing out!!!

ALABAMA

The Central Alabama Epilepsy Support Group is committed to improving the lives of the people who experience epilepsy through education, awareness and peer support.  http://www.meetup.com/Central-Alabama-Epilepsy-Support-Group/

ARIZONA

The Epilepsy Foundation of Arizona has support groups in Phoenix (Spanish speaking), Yuma, Sierra Vista, Lake Havasu City and Phoenix. http://www.epilepsyfoundation.org/local/arizona/groups.cfm

CALIFORNIA

The END Epilepsy Groups of Greater Los Angeles is composed of an Adult Therapy Group, Family & Friends and Women with Epilepsy as well as a Sibling Network. Each group and even each gathering may have a different topic or focus but, over a period of time, participants will benefit from the mutual therapy, education, socializing, self-help and idea-sharing. http://epilepsyfoundationgla.org/api/Index.cfm/cms.page/i/4145/Support-Networks/.

The Epilepsy Support Network of Orange County, CA has an Adult Educational Support Group, Teen Club, Emotional Support Group for Parents, On-Line Support Group for Parents, Mom’s Night Out, Special Needs Child Care and Community Presentations. http://www.epilepsysupportnet.org/html/services.html

The Epilepsy Foundation of San Diego County, provides Individual and Family Counseling, plus Crisis Intervention to help in the process of learning to cope successfully with epilepsy, as well as with the life issues impacted by epilepsy.  http://www.epilepsysandiego.org/index.asp?f=supserv

CONNETICUT

The Connecticut Epilepsy Advocate has five support groups which meet monthly. They include: Adults Living With Epilepsy, Ability Beyond Disability, Middletown Parent Support Group, Stamford Support Group and Groton Support Group. http://www.ct-ea.org/supportgroups.html

FLORIDA

Florida State Support Groups link you to meetings in communities throughout the state. To locate a support group near you, locate the county you live in or the closet county. The groups are generally free and open to anyone with epilepsy. Some groups are also open to friends and family members. http://www.doh.state.fl.us/family/epilepsy/Support.html

HAWAII

The Epilepsy Foundation of Hawaii provides information and educational services to individuals and groups with questions pertaining to epilepsy. The EFH’s mission is to increase public awareness of epilepsy and to build a sense of community, enabling those with epilepsy to participate fully in the community at large. http://www.hawaiiepilepsy.com/

ILLINOIS

The Epilepsy Foundation of Greater Chicago. Whether you’re a parent of a child with newly diagnosed epilepsy and in search of guidance from those who have been there, an adult with epilepsy who is looking for advice and encouragement from others, or just someone looking for camaraderie from others who understand the challenges of living with epilepsy, they have a support group that will probably help you. They also have groups specially designed for caregivers and loved ones. http://www.epilepsychicago.org/programs-services/support-groups/

The Epilepsy Foundation of Greater Cincinnati includes support groups in Milford, Mason, Wilmington and Hamilton. The support groups are adults with epilepsy, as well as parents, families and caregivers of those affected with epilepsy. The purpose of the groups is to come together to share tips, mutual concerns, common issues, challenges and successes with other members of the group. http://www.cincinnatiepilepsy.org/support-groups.php

The Epilepsy Support Program for McHenry County in Crystal Lake is for children and adults with epilepsy. Their program is to support you and your family with: Individual information and education, referrals, community and school education of epilepsy, monthly support group meetings, development of an individual seizure plan and seizure clinics. http://www.optionsandadvocacy.org/index.php/programs/epilepsy-support-program

IOWA

Mercy Medical Center and the Greater Des Moines Area Epilepsy Foundation have partnered to provide two support groups for epilepsy patients and their families. http://www.mercydesmoines.org/events/EpilepsySupportGroups.cfm

KANSAS

The Epilepsy Resource Connection of Sedgwick County, Kansas was formed for people with epilepsy/seizure disorders, their families, and their communities through a variety of programs. ERC strives to provide support and counsel for individuals with epilepsy/seizure disorders through education and training that will enable them to achieve their highest level of independence and quality of life. ERC serves many people, offering information and referral services. There is an active monthly support for adults.  http://www.arc-sedgwickcounty.org/ERC.html

KENTUCKY

The Epilepsy Foundation of Kentuckiana offers additional support groups and educational opportunities for the public throughout the year in various Kentuckiana locations. Right now, there are support groups in Lexington and Murray. http://www.epilepsyfoundation.org/local/kentuckiana/groups.cfm

The Northern Kentucky Epilepsy Support Group meets in Florence. http://www.cincinnatiepilepsy.org/support-groups.php

MARYLAND

The Epilepsy Foundation of the Chesapeake Region is part of The Abilities Network Epilepsy Services Program which serves individuals, families, and the greater community with epilepsy education, information and referral services, assistance with medical issues, advocacy, support groups and scholarship support. Included are Anne Arundel County, Baltimore County, the Tri County Area (Calvert, Charles & St. Mary’s Counties), Frederick County, Harford County, Howard County, Montgomery & Prince George’s Counties, plus Western Maryland. http://www.epilepsy-foundation.org/services/epilepsy/

MICHIGAN

The Epilepsy Support Group of Michigan has support groups in Detroit, Kalamazoo, Petoskey, Roseville and Temperance. They also have a unique program called Learn & Share Conference Calls. Each scheduled “conference call” covers a different topic such as Managing Memory Problems, Women and Epilepsy, Epilepsy Surgery, Ask the Epileptologist, Ask the Pediatric Epileptologist, Stress Management, Advocating for Students with Epilepsy, Diagnostic Tools for Epilepsy: From EEG to PET Details, Employment Issues for People with Epilepsy and Open Discussions. http://www.epilepsymichigan.org/template.php?pid=82

MINNESOTA

The Minnesota Epilepsy Foundation. St. Paul is the central location for the support groups in Minnesota and meets once a month. The Foundation in St. Paul covers the entire state, and they have contacts in the Twin Cities, St. Cloud, Duluth, Rochester, Fargo, and a few other area in Minnesota.  http://www.epilepsyfoundationmn.org/search/default.aspx?searchid=353&keyword=adult+support+groups

NEBRASKA

The Nebraska Medical Center Support Group’s mission is to provide hope and knowledge to epilepsy patients and their family members. Sessions may include educational information and resources, expert speakers on epilepsy topics and time for participants to talk, share their experiences, validate their struggles and celebrate their triumphs. http://www.nebraskamed.com/Neuro/Epilepsy/Support-Groups

NEVADA

Las Vegas — Sunrise Hospital.  Dr Bangalore, an epileptologist, and one of his nurses is responsible for getting the group started. The meetings are adult oriented and range from new info regarding seizures treatment, new meds, or simple chit-chat among each other. We are a very close group and welcome all new-comers.  http://sunrisehospital.com/our-services/nni/support-groups.dot

NEW ENGLAND

The Epilepsy Foundation Massachusetts, Rhode Island, New Hampshire and Maine provides support for various groups, including: Adults, ages 18 and over, and teens, ages 15 – 19, living with epilepsy. They also provide a  Parent and Family Support Network. Included under this umbrella is a Cape Cod Adult Support Group, Rhode Island Adult Support Group, Portland, Maine Adult Support Group, Boston Adult Support Group and a Post-Surgery Adult Support Group.  (NOTE: Call 617-506-6041 x19 to confirm meetings before attending, in case of cancellation.) http://www.epilepsyfoundation.org/local/massri/groups.cfm

NEW JERSEY

The Epilepsy Foundation of New Jersey has support groups in Atlantic/Cape County, Denville, Hackensack, Turnersville, Vineland and Somerset County.  They provide comprehensive support, personalized services and advocacy for individuals and their families in order to maximize their participation in society. http://www.efnj.com/content/info/epilepsy/adults.html

Epilepsy Life Links in NY and NJ provides a comprehensive array of support and life-improvement opportunities for people diagnosed with epilepsy and seizure disorders. Their programs focus on the physical and mental well-being of people with epilepsy by promoting education, accessibility to health care, peer communication and a sense of community. They developed these programs with the epilepsy patient in mind and are accessible to caregivers and healthcare providers. Offices are located in Hackensack, NJ, Middletown, NY, Summit, NJ, Staten Island, NY, Jersey City, NJ, Second Avenue, NYC,  New Brunswick, NJ, with a Veteran’s Educational Support Group in Middletown, NY. http://www.epilepsylifelinks.com/epilepsy-support-groups.php

NEW YORK

The Epilepsy Foundation of Long Island has a Nassau County and Suffolk County Support Group. Both groups are run by clinical social workers who specialize in treating people with epilepsy. Groups meet on a monthly basis. http://www.efli.org/programservices/supportgroups.php

The Capabilities Programs and Services in New York State and Northern New Jersey’s goal is to improve one’s quality of life and assist in reaching each people’s optimal level of independence. Their services are provided in either your own home and within the community. They include: Service coordination, consumer independence, basic organization and planning, budgeting and financial issues, vocational services, counseling, education and training, along with a myriad of other services. Their main office is in West Nyack in Rockland County with other offices in Middletown, Orange County, as well as all seven lower New York counties of Dutchess, Orange, Putnam, Rockland, Sullivan, Ulster and Westchester, plus Northern New Jersey. http://www.essny.org/programs_services.html

The Epilepsy Foundation of Northeastern NY serves 22 counties including Albany, Clinton, Columbia, Dutchess, Essex, Franklin, Fulton, Greene, Hamilton, Herkimer, Jefferson, Lewis, Montgomery, Rensselaer, St. Lawrence, Saratoga, Schenectady, Schoharie, Sullivan, Ulster, Warren, and Washington county. Their wide variety of programs are tailored to children, adults and their families. http://www.epilepsyfoundation.org/efneny/

The Richmond University Medical Center in Staten Island was formed to meet the needs and concerns of children, adolescents and adults whose lives are complicated by seizures and medication side effects. They have added Epilepsy Life Links, a group of programs offering assistance to patients and community members with epilepsy. Support includes: Case management/patient advocacy, educational advocacy, employment advocacy, free seizure recognition, plus first aid training and veterans’ support groups. http://rumc.com.microsoft2008hosting.com/rumcsiportal/Services/EpilepsyCenter/tabid/170/Default.aspx

The Epilepsy Foundation of Rochester-Syracuse-Binghamton, NY, has chapters in the following counties: Broome, Monroe, Oneida, Onondaga, Tompkins county and Ithaca. Support groups provide opportunities for sharing feelings, problem-solving and networking with individuals in similar circumstances. http://www.epilepsyuny.org/supportgroups.htm

The Capabilities Adult Epilepsy Support Group in Rockland County, West Nyack, NY maintains an environment where adults with epilepsy and parents of children with epilepsy can talk freely about their problems and rejoice about their solutions. Refreshments are provided. http://www.efsny.com/resources.html

NORTH CAROLINA

Charlotte, NC Epilepsy Support Group. Programs may consist of an educational topic, networking to improve the quality of life for people with epilepsy, discussion groups, or social activities. The meetings are interactive and are aimed to improve the quality of life for people with epilepsy whether they are a patient, caregiver, friend, spouse, partner or parent. http://www.epilepsycharlotte.org/   

OHIO

The Epilepsy Foundation of Central Ohio Support Group encourages people with epilepsy, their spouses, partners and parents to attend. In addition to informal sharing of experiences, the support group also provides epilepsy education and discussion of important related issues — such as medication assistance programs, health insurance, drivers’ licensing — all of which can have a major impact on the quality of each person’s life. http://www.epilepsy-ohio.org/adult

The Epilepsy Center of Northeast Ohio in Lake West is open to adults with epilepsy and their friends, caregivers and family members. Support group sessions will include discussion and learning from one another with occasional guest speakers. http://www.epilepsyinfo.org/Services/SupportGroups.shtml

The Epilepsy Center of Northwest Ohio offers many teen, family and individual support groups throughout a 13 county coverage area. There’s a Family Support Network, Family Camp, Living With Epilepsy Seminars and a Resource Center with media related to epilepsy. http://www.epilepsycenter.org/community.html

The Epilepsy Foundation of Western Ohio Education and Support Groups is unusual in that it includes meetings for Men and Epilepsy, a Young Adult Group and Parents of Young Adults Information Group. http://www.epilepsyfoundation.org/westernohio/groups.cfm

PENNSYLVANIA

The Gettysburg PA Area Epilepsy Support Group, sponsored by Gettysburg and York Hospitals, offers patients the opportunity to talk and gain encouragement from meeting with others who have epilepsy. http://www.wellspan.org/body.cfm?id=873

The Epilepsy Foundation of Eastern PA Support Groups offer adults, children, parents, friends and family members an opportunity to share emotional support while gaining information and knowledge.  Speakers are an important component to the support group process. Groups meet in Bucks County, Center City, Hazelton Area, Lancaster County, Monroe County Lehigh Valley and Wilkes – Barre / Scranton. http://www.efepa.org/programs/view/10

The Epilepsy Foundation of Western/Central PA, has support groups to meet other people in your local area who are also coping with epilepsy. The groups offer socialization, friendship and learning. They are open to anyone with epilepsy or a seizure disorder. Spouses, significant others and friends are also welcome to attend meetings. The groups often invite speakers to address concerns such as legal rights, medication, self-esteem, driving, employment, family dynamics and housing. There are support groups in Altoona, Hershey, Johnstown, Pittsburgh, and York. http://www.efwp.org/programs/programs_10_f.shtml

TENNESSE

The Epilepsy Foundation of Middle and West Tennessee has support groups in Dyer County, Memphis and Shelby County, Nashville, Madison County and Cookeville. Their mission is to ensure that people with seizures are able to participate in all life experiences and will prevent, control and cure epilepsy through services, education, advocacy and research. http://epilepsytn.pmhclients.com/index.php/support/

TEXAS

The Epilepsy Foundation of Central & South Texas support groups discuss problems of daily living: insurance, jobs, medical care and other issues. The group is designed to provide peer support, information sharing and discussion of common interests. They may also include presentations by professionals on topics of interest. Groups meet in Austin, Pipe Creek, McAllen, Brownsville, San Antonio and Temple. http://www.epilepsyfoundation.org/local/efcst/groups.cfm

Partners Resource Network, Texas. You’ll find epilepsy support groups in Austin, Dallas, Houston, San Antonio. Their mission is to ensure that people with seizures are able to participate in all life experiences through services, education, advocacy, and research. http://www.partnerstx.org/Resources/Epilepsy/Support.htm

VIRGINIA

The Epilepsy Foundation of Virginia Support Groups includes locations in Roanoke, Winchester and South Hampton Roads in Virginia Beach. EFVA ‘s mission is to promote awareness about epilepsy and provide assistance to those with the disorder. The Epilepsy Foundation of Virginia programs include two help lines, five regional offices and over 10 peer counselors statewide. https://www.epilepsyfoundation.org/local/virginia/groups.cfm

WASHINGTON

The Epilepsy Foundation Northwest Washington. You’ll find networking and support groups in Anchorage, Seattle, Spokane, Portland Tacoma and Vancouver, plus Coos Bay (Oregon). http://www.epilepsynw.org/programs/education-and-networking-groups

WEST VIRGINIA

The Huntington, West Virginia Outreach Program, offers support services and epilepsy awareness to those in need. So far, this new support group has met with school nurses in two districts, and has teamed up with Mark Stecker, MD, a neurologist known nationally as an expert in the diagnosis and treatment of epilepsy. Future plans involve addressing transportation issues to and from epilepsy appointments, continued community education in schools, police, fire and EMTs, and counseling in local clinics. http://caudillwebsolutions.com/cincinnatiepilepsy/huntington-west-virginia-outreach.php

CANADA

The Center for Epilepsy & Seizure Education in British Columbia deals with adult issues such as: Anger, fear, and depression relating to the diagnosis of epilepsy. And employment issues regarding: Ability to maintain gainful employment, disclosure, discrimination, and socialization anxieties: sexuality concerns, alcohol intolerance, coping with drug side effects, driving, maintaining independence and the capability of maintaining parental responsibilities. http://www.epilepsy.cc/index.php?option=com_content&view=article&id=130&Itemid=133

Epilepsy Adult Support Group – Kitchener/Waterloo, Ontario is for people 18 years of age or older, living with epilepsy or if they are a support person for someone living with epilepsy. http://www.epilww.com/content/adult-support-group-kitchenerwaterloo

At Epilepsy Ontario, a menu of seizures and issues related to epilepsy can be found on this interactive page. From Brain Tumors to Living with SUDEP. Although not all subjects offer a support group, it’s a rich source of information. http://www.epilepsyontario.org/client/EO/EOWeb.nsf/web/Simcoe+County

The Epilepsy York Area in Ontario serves Aurora, East Gwillimbury, Georgina, King Township, Markham, Newmarket, Richmond Hill, Vaughan and Whitchurch-Stouffville. People can meet, socialize, or simply gather to share ideas, personal stories or experiences, issues concerning epilepsy or even coping strategies with one another. http://www.epilepsyyork.org/support%20groups.htm

Epilepsy Toronto offers comprehensive support for adults with epilepsy including counseling, advocacy and information seminars. There are support groups for adults with epilepsy, professionals, pregnant and new moms, partners of people with epilepsy and a Friday recreation group. http://www.epilepsyontario.org/client/EO/EOWeb.nsf/web/Toronto

Epilepsy York Region in Ontario, provides parent groups, adult social groups and counseling for individuals with epilepsy or caregivers of people with epilepsy. They have in-service presentations to the public, other agencies, teen weekends, schools and workplaces. Printed information is available in other languages. A resource center is also available, plus summer camps. http://www.york.ca/nr/yorklink/Agency.asp?AgencyID=246#

 

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