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Adult Epilepsy Support Groups
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phylisfeinerjohnson posted:
Do you have any Adult Epilepsy Support Groups near you?

I'm trying to compile a master list, because there seems to be such a lack of them.

To see what I've found so far, go to: Adult Epilepsy Support Groups

http://epilepsytalk.com/2011/05/20/adult-epilepsy-support-groups/#comment-3843

Phylis Feiner Johnson
www.epilepsytalk.com
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saxofone1 responded:
Hi Phylis

I participate in an epilepsy group in Las Vegas. It is open to anyone but at this time it is primarily adult attendance. The group meets the 2nd Wednesday of the month at Sunrise Hospital, 3186 S Maryland Parkway. The nearest cross street is Desert Inn. The group meeting are held in the hosp's auditorium from 5:30pm -6:30pm.

Dr Bangalore, my epileptologist, and one of his nurses is responsible for getting the group started.

The meetings 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.

Some of the meetings have themes such as dressing up in custom for Halloween or game night. I dressed up as a raiderette this past October. Face paint...jersey...cap.

Everyone is welcome.

Good luck in comiling your list.
angie
 
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dancer86442 responded:
Hi Phylis,

Well, I found several in AZ. Closest is Lake Havasau. A 1 hr. Drive. Angie's reply is 1 to add to your list. I only noted Reno, Nevada. Better add hers to your List, while ya can.

Angie, hate to say this, but, it is against WebMD policy to mention DRS names. Please don't be offended if your post disappears. You can send me the info if it does. I will make sure Phylis gets it. But, who knows, maybe, Haylen will let it slide this time. Since you posted him as responsible for your group. How many members do you have? I'm only an hr &1/2 drive to Vegas. But, I doubt Hubby will Drive me there or Lake Havasau. Thank Goodness for the Internet!

Love Candi
 
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saxofone1 replied to dancer86442's response:
Hi Candi

Sorry that I went against the WebMD policy regarding mentioning DRS names. I won't be offended if my post disappears. If it does let me know if I should submit a second reply.

There are about 15 in the support group. This includes the individuals with epilepsy along with family and friends.

I would love to meet you. Starbucks for a frap and something sweet. I used to the ride the bus for an hour or more to get to the doctors.

Give your hubby a "PRETTY, PRETTY, PRETTY PLEASE"
Break him down.

I'll be more careful about names. No offense will be taken if my post is removed. Take care.

angie
 
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clarinet2 responded:
Phylis,
There are support groups in the Minnesota. St. Paul is the central location for the Minnesota Epilepsy Foundation and meets once per month. The Foundation in St. Paul covers the entire state, but they have contacts in St. Cloud, Duluth Rochester and a few other area in Minnesotat that I cannot think of right now.

Because many people diagnosed with seizures cannot drive it can be difficult to get to St. Paul if they live in a suburb out of that area. Through the Minnesotat Epilepsy foundation another support group was started in a southwest subarb of Minneapolis.

As Angie said the support groups are a great way to share our own personal stories, learn more about medications, chit chat and reach out to others who need to talk.

There is an annual walk for Epilepsy each year. It does not get the media coverage as the Race for the Cure does, but this year we are trying to contact the media to make sure the news can broadcast a news clip about the walk. I found out that in my hometown in Eau Claire, Wisconsin they also have a walk for Epilepsy.

Each year the Minnesota Epilepsy Foundation in St. Paul has a annual picnic for family, friends and anyone diagnosed with seizures.

The Minnesota State Fair also has booth in the Education center for the Epilepsy Foundation which allows citizens to volunteer to answer questions and meet others who are diangosed with seizures.

There is a summer camp for children called Camp Oz which allows children to take part in camp activites with staff and medical staff there to help when a child has a seizures. The children can meet other children in their age group who also struggle with seizure disorders.

The Foundation also had tickets for a baseball game for the Minnesota Twins. The tickets were less expensive and we all sat together in a group of citizens who were diagnosed with seizures. It was a great way to socialize.

Dana
 
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mizzslay replied to clarinet2's response:
Hi I've been recently diagnosed with having partial focal siezures they started in July of 2010 just out of the blue . My Dr. still hasn't beem able to figure out exactly the cause, but I figured if i could find other people here in LasVegas that are going to the same thing i could get more info on the subject and learn how to cope I'm just do lost right now glad to know there is a group here at Sunrise maybe I will attend.
 
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dancer86442 replied to mizzslay's response:
Hello mizzslay,

Welcome to Epland. You have joined a great Bunch of PPL. We will gladly point you in Directions to Learn More about Epilepsy &/or Seizure Disorders. Same Thing. Just DRs/Researchers, changed the Name.

I think you meant your questions for saxofone. She is in Las Vegas. If you do go to a meeting Please give her a Big Hug for me. She has been such a Dear here at WebMD (Epland).

I have a question? Are you keeping a Journal? Why? Cuz, it will help you figure out what your Triggers (not Cause of Ep, but, certain things do Start our Seizures) are & is Highly Recommended by All of us w/ Seizure Disorders. More Info under Tips.

Please use our Resources & keep asking questions. We will be 'listening'.

Love Candi
 
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saxofone1 replied to mizzslay's response:
Hi mizzyslay,

I live in Las Vegas. I belong to a epilepsy support group that meets at a local hosp(Sunrise Hosp, Maryland Blvd & Desert Inn). We meet the 2nd Wednesday of each month. Everyone is always welcome. This is a fun-loving group that shares everything and supports each other. We talk about our epilepsy, the meds, personal concerns, etc. Whatever one feels is important it will be discussed. If you would like my email let me know. Maybe we can meet before the next group. I live near the Southern Hills Hosp.

About me...My first seizure was March 27, 1975. I have been on 10 or more aeds. I had a partial rt lobectomy done in '02 when I lived in Mpls. I am currently taking Keppra XR and Trilepal. Let's meet soon.

You have a friend.

angie
 
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saxofone1 replied to dancer86442's response:
Thanks Candi,

I hope mizzy and I do have the chance to connect. Have a good day. High in the 100s for the next 7 days. UGH!!!!

Take care and lots of love,

angie
 
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dancer86442 replied to saxofone1's response:
Good Morning Angie,

Well, the Good News is this 'Heat Wave' only has about 6 weeks left (Give or Take) B4 temps Cool. Sure am Looking Forward to the End of Sept!

I Hope you & Mizzy get to meet, too. Some Day, I feel We will meet. Ever hear of the Oak Ridge Boys? Watch for their Show as an Upcoming Event at the Riverside in Laughlin. Let me know if Interested. Worth Seeing/Hearing! Blue Grass Rock.

Love & Hugs!

Love Candi
 
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saxofone1 replied to dancer86442's response:
Hi candi,

sorry for the delay in this response though I do no that apologies are not necessary. I will check on transpo this week. I'm a jazz, classic r& b gal but always open for a nite of good music and fun company. I'll send you word via email. Have a good day.

angie
 
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saxofone1 replied to mizzslay's response:
Good morning mizzslay,

How are things going? Handling this heat wave in Vegas? Be careful cause we all know that excessive heat can generate dehydration or seizures. The next support group meets Sept 14 @ the Sunrise Hosp(Desert Inn & Maryland) in the auditorium. The meeting starts at 5:30p. They are generally an hour long though many of us stay longer. I hope to see
you there. Have a good day.

angie
 
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saxofone1 replied to saxofone1's response:
Hi mizzlay,

This is a reminder for the next support group. It is still scheduled for this Wed, Sept 14 @ 5:30pm. I think this month's disc is about relaxation excersises that have helped others in the group with their seizure control. Dancing excersises to meditative breathing. Come if you can. If not, maybe next month. Take care. Hope to see ya.

angie
 
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hawiian_girl_73 responded:
I had one in PHX at st joe's hosiptal and it was out of the way to getthere so Idid not ever go to it.

there is also one herer in Honululu as well and I have not gone to that one etiher,

Nancy
 
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saxofone1 replied to hawiian_girl_73's response:
Hi nancy,

It's good to know that there is a support group in your area. I hope that you can find a way to get there. It always helps to have the support of others from the ep community to chat with. Let us know how it goes should you make it. Have a good day.

angie


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