|
|
If you (or your loved one) have had a vagus nerve stimulator implanted, what happened after it?
(Note: You must log in or register to participate in this poll.)
Not every group does the same things. Even groups with similar activities may have different results because of the individuals involved. But in nearly every group, members seem to find PEACE:
Practice in skills and relationships
Encouragement from meeting others who have overcome challenges like your own
Acceptance by a group of people who share your feelings and experiences
Comfort from knowing that you are not alone
Empowerment through increased knowledge and confidence
If you're a person with epilepsy, you may be nervous about socializing. Maybe kids on the playground teased you about having seizures. Maybe you weren't allowed to participate in the same activities as other kids, so you didn't have many chances to make friends or learn to do the things that others do for fun. In an epilepsy support group, you can practice making friends and participate in activities without worrying that you'll be rejected because you have epilepsy.
Parents of children with epilepsy also can practice skills in a support group. They can get comfortable talking about the issues they need to discuss with teachers and doctors. They can even role-play those situations, or practice parenting skills.
Encouragement: You can succeed tooIt's nice to read stories (like some on this website) about people with epilepsy who have done well—people with good educations, good jobs, happy families. It's even nicer to meet these people in person. But it's also nice to meet people who are still struggling. When they have a success to report, you can cheer them on and know that they will be there to cheer your successes.
Acceptance: You're OKIt's easy to get the idea from TV and movies that the way to be accepted is to be good-looking, wear the right clothes, do the right things—and not have epilepsy. Meeting other people with epilepsy and finding that you like being around them (most of them, at least) teaches that you too are a person that people want to be with. No matter how many seizures you have, there are plenty of times when you're just you, a person who knows things and can do things—a person who's good to know.
If you're a parent of a child with epilepsy, you also need to feel acceptance. You may feel guilty because you're not patient enough or you don't spend enough time with your child. When you meet other parents with the same challenges, you can learn that it's impossible to be a perfect parent. It's not wrong to have angry feelings or to wish for more time for yourself. It's just human. Parents in a support group can help each other to do better without feeling like a failure because they can't do it all.
Comfort: You are not aloneEpilepsy can be lonely. If you have epilepsy, you know that even the most loving family members and friends can't really understand your feelings about being injured or embarrassed after a seizure. They can't know how restricted you feel. They don't wonder why they're the only ones who have to take pills every day to keep the world from turning upside down.
If you're the parent of a child with epilepsy, you're probably dealing with problems that your parents never faced. The other parents in the neighborhood aren't facing them either.
A support group heals this kind of loneliness.
Empowerment: "Knowledge is power"In a support group, you might gain knowledge that could help you control your seizures, buy your seizure medicine cheaper, find a job, get more help for your child in school—almost anything, depending on how the group operates and who the other members are. Even if you just learn more about what epilepsy is, that will help you explain it to others. Then they won't be so worried when you're around.
Unless you're in a remote area, there's probably a support group nearby. In the United States, a good place to start looking is your local Epilepsy Foundation affiliate. Support groups also may be organized by hospitals or epilepsy centers. Your neurologist or epileptologist may have information. Sometimes groups are listed in the newspaper too.
Can't find one?If you're a parent and can't find an epilepsy group in your area, you may get some benefit from joining a group for parents of children with other chronic disorders. Some of the problems that you're facing, such as dealing with schools and the health care system or disciplining your child, are the same. The day-to-day problems of parents whose children have another disorder are different, but you do have much in common:
If you've explored all the possibilities and haven't found a suitable group, maybe you should start one! Talk to your doctor or someone at the Epilepsy Foundation. You may be able to get the name of a professional, perhaps a social worker or psychologist, who has experience in running groups. It's usually a good idea to have a person like this as the facilitator, to keep things running smoothly. Make sure that this person is willing to make a commitment to the group. A facilitator is especially important if the group is for teens or children. Adults with epilepsy or parents may be able to carry on without a professional facilitator, but someone will need to take the lead.
Not every new group is a success, of course, especially right away. You can't control how much support you get from others. But even if your group has to struggle, you can feel good about making the effort!
If it's impossible for you to find or start a suitable support group, participating in online discussions (like the Community Forum at epilepsy.com) will provide some (but not all) of the benefits of a face-to-face support group. And it's a way to keep the community feeling going between group meetings!
Topic Editor: Steven C. Schachter, M.D.
Last Reviewed:12/15/06
Welcome to the Wiki. This space is created for epilepsy.com members to share their own experiences and expertise to help refine and expand the discussion around important topics.
No members have yet contributed to this topic. If you are not yet an epilepsy.com member, register today to get started on this Wiki topic and the many other advantages of being a member. If you are a member and wish to be the first to edit this Wiki topic, please make sure to login, then click on the orange "Start Wiki" button at the top of this page. Or, learn more about Wikis.
| Title | Posted | |
|---|---|---|
| who am i? | Feb 18, 2008 |
| Title | Posted | |
|---|---|---|
| Sex drive and seizure medications | May 16, 2008 | |
| dfriedman | ||
| life | May 16, 2008 | |
| kevinmo99 | ||
| son newly diagnosed with Absence Seizures | May 16, 2008 | |
| shu | ||
| Controlling absence seizures | May 16, 2008 | |
| shu | ||
| Developmentally Delayed 1 yr. old | May 16, 2008 | |
| kristy_08 | ||
| My parents dont care...I feel soooo alone! | May 16, 2008 | |
| blondestar25 | ||
| Epilepsy and marijuana | May 16, 2008 | |
| cjad234 | ||
| Absence Seizure in toddler, need more info! | May 16, 2008 | |
| KellaC32 | ||
| New to site and living with Epilepsy | May 16, 2008 | |
| asking79 | ||
| Binaural Beats and Epilepsy | May 16, 2008 | |
| Jamie-vette | ||
| View all Forums | ||
| Title | Page Views | |
|---|---|---|
| Over 40 Different Types Of Seizures....... | 21,808 | |
| spiz | ||
| my.epilepsy.com Updates | 20,169 | |
| epi_help | ||
| topamax and weight loss | 18,721 | |
| alexia mom | ||
| kepra | 18,468 | |
| brian mattingly | ||
| Possible cure for absence seizures | 15,297 | |
| pdl1 | ||
| Epilepsy and marijuana | 14,075 | |
| cjad234 | ||
| Sexual Side Effects | 12,254 | |
| George R | ||
| How exactly do aura's feel | 11,992 | |
| WendyBendy | ||
| MEDICAL ALERT I.D.'s | 10,952 | |
| picnupthepcs | ||
| Over 40 Different Types Of Seizures - Part 2 | 9,752 | |
| spiz | ||
| View all Forums | ||
| Title | Posted | |
|---|---|---|
| It's slowly sinking in | Mar 29, 2008 |
| Title | Posted | |
|---|---|---|
| Long Day | May 16, 2008 | |
| kroiz | ||
| DOES IT MATTER IF I BLOG OR NOT? IT DOESN'T CHANGE ANYTHING. I WISH I COULD CRY. | May 16, 2008 | |
| ROCKNROLL | ||
| I need eye candy and explosions! | May 16, 2008 | |
| stephsobota | ||
| WooHoo! | May 16, 2008 | |
| d00r | ||
| Im not alone | May 16, 2008 | |
| jjogden | ||
| interictal dysphoric disorder | May 16, 2008 | |
| cameo | ||
| Angry with the neuro's office and frustrated by the school situation | May 16, 2008 | |
| Gina Marie | ||
| HAPPY MOTHER'S DAY TO ALL THOSE SPECIAL MOM'S | May 15, 2008 | |
| scratch | ||
| I've Lost My Mind | May 15, 2008 | |
| crashllama | ||
| Looking for answers | May 15, 2008 | |
| ivyrayne | ||
| View all Blogs | ||
| Title | Comments | |
|---|---|---|
| This is my own blog...how cool is that | 159 | |
| Niko | 49 | |
| yannie44 | ||
| Mood at the Moment | 33 | |
| spiz | ||
| In college and trying to cope | 30 | |
| tuckerviolinist | ||
| New pictures of Grandbaby Princess Sarah | 28 | |
| txrhb1 | ||
| battlt -becareful what you wish for .... it might come true? | 27 | |
| battlt | ||
| Not In A Good Mood! | 27 | |
| spiz | ||
| Hello All New Here | 26 | |
| KyliesMom | ||
| Epilepsy and anti depressants | 26 | |
| cameo | ||
| EPILEPSY, NON EPILECTIC SEIZURES, HORMORNES, NOT HORMONES | 24 | |
| ROCKNROLL | ||
| View all Blogs | ||
| Title | Posted | |
|---|---|---|
| Ms. | May 16, 2008 | |
| sueanne | ||
| shilpa | May 16, 2008 | |
| shilpa | ||
| First seizure at age 25 | May 15, 2008 | |
| suziereno | ||
| its hared but then i found this | May 15, 2008 | |
| dan2work | ||
| Nobody Understands | May 15, 2008 | |
| tmpino76 | ||
| Depakote and Children | May 14, 2008 | |
| twin12 | ||
| what goes around comes around | May 14, 2008 | |
| kelly28 | ||
| Shari Story | May 13, 2008 | |
| sharebear03 | ||
| susu | May 13, 2008 | |
| susu | ||
| Ayden's Story | May 13, 2008 | |
| aydensvoice | ||
| View all Stories | ||
| Title | Page Views | |
|---|---|---|
| no comment Aetna rejects epileptics for insurance now! | 440 | |
| wenko | ||
| my story | 423 | |
| snoby | ||
| Kelly's Life With Epilepsy | 360 | |
| kjcanada1979 | ||
| Always Have On Clean Underwear | 347 | |
| crashllama | ||
| What My Seizures Are Like...... | 331 | |
| javaman | ||
| my brain has died a thousand deaths........... | 309 | |
| banffgirl | ||
| Jessica Roiz | 291 | |
| kroiz | ||
| How I found out I hade seizures | 271 | |
| HilaryWeinberg | ||
| Crystal's story | 267 | |
| Crystal11 | ||
| Nocturnal grand mal seizures (primary generalized epilepsy) | 267 | |
| karalyeva | ||
| View all Stories | ||
