college support group?

[Aubrey]

I am going back to college for round 2 in 9 days. I know of no one but no one in my department with epilepsy. When I spoke to the disability support person she said she didn't know if she had ever helped anyone with E in my department. Would anyone be interested in joining a college support social group on here if I started one? Having E has spawned some unique challenges for me in a college environment and I was wondering if others on here are going through the same thing.

[Nakamova]

You could PM Bernard about starting a specific forum for college students. I think it's a great idea, but my college days are long behind me...

[Aubrey]

Thanks. I will do that. I saw that there was a creative writing, and various diet forums, I thought maybe a college student forum might not be a bad idea. The foreign-ness of epilepsy at my college is weird for me, and I am curious if anyone else is experiencing this.

[karenb68]

Hi Aubrey, first off I hope you have a great year at school! I have already started wondering how to plan for my daughter (prepare myself, more like) going off to college. I'm sure I'm not the only parent that would be interested in students' firsthand experiences and tips for preparation. For now, I try to prepare her friends and honestly, they're less freaked than most of the adults around her. She's been fortunate to have some very supportive friends.
Hopefully your campus will be large enough to sustain a local group if you chose to join or start one. I live in a rural area and online searches for local support groups have found almost nothing

[Aubrey]

Thank you Karen! While affiliated with a larger school, our building has about 600-odd students, and it is not a field that is conducive to people with epilepsy, seemingly. And, I am old. From talking to the dean I strongly suspect that I am well and truly the only one with this condition. And my first year was nearly a disaster. Fortunately, all of the teachers, and the deans and all are very supportive.

Best of luck to your daughter! She sounds like she has a good support system going in. And a caring mom. It takes some will, but I am sure she will do fine.

[karenb68]

you're old? LOL, if it makes you feel better I'm 41 and entering my senior year of college next week.

[Aubrey]

ok ok you win. But I am close on your heels. And I am still 2 years from my degree.

[RobinN]

Rebecca is starting college this year (actually at the end of August), though she is going to do Community College for the first two years, and live at home. I could suggest that she consider corresponding on a college forum here, yet up until now, she has not wanted to be very active with this group. From time to time I encourage her to post something, but that is the extent of it.

She views this as "Mom's support group".

We met this week with the Disabled Students counselor to let them know her medical situation. It was a great meeting, and she was able to get the units she needs in order to stay on our insurance. She still needs to meet with the nurse on campus. Privacy lawas sure have made the sharing of information a nightmare.

[rangerwvu]

Hi Aubrey,
When I was in grad school a few years back, there was a student group, albeit not really large, for students with disabilities. A Professor in my Health Care Administration MBA program was the 'sponsor' for lack of better words and served as a link/voioce to the student affairs office. I can see where it is unlikely that there would be another student in your boat so to speak, but there may likely be students who have seizures as a part of their primary disability, or are at the very least on some of the same meds we all take in the E world so perhaps could relate on those levels? Another thing to possibly try is if your school has a grad program in social work or counseling, contact the Dean of that school. Sometimes those folks actually look for students to meet and form groups with/learn from as part of their educational experience which should include some training on living with disabilities...and E is one that never crosses most folks minds, so you could really be providing a service to them!

Sorry, those are the only things I can think of and know that they may not meet your goal or even be realistic!

I got you both beat at 44 so you are still a pup! LOL All the best in your upcoming school year.

[aboizd1]

Hi I think a college support group would be a great idea! I'm in my third year and have had E for 1 year of my college days and it has been really stressful and challenging....I'd love somewhere to chat!

[Bernard]

Is there any reason that college students can't use the Kitchen/Loft? I really believe there is more value for members when the forum rooms don't segregate folks too much. You lose a lot when half the community isn't reading or responding to posts because they aren't currently in college.

[Aubrey]

I think a social group for college students/anyone interested in becoming college students/those with something to contribute to college to students/etc. could be quite useful. I know for me personally, it would be easier, for example, if I wanted to discuss something pertaining to having epilepsy and going to college, if those things were already in one place, instead of having to comb the Kitchen for them. Otherwise I would not have brought the idea up. Plenty of the social clubs on here could be (more) easily integrated into the forum than this subject. I do not understand the objection to this one, particularly if there is demand for it. I do not think it (or any other social group) is exclusionary. For example, I am not interested in starting the GARD diet, but I do not feel excluded from their social group. It never occurred to me to feel like I should. It is nice to know it is there, however, if I were interested, because I would know right where to go. And this is the kind of open community that if any new information comes up, we can trust that it will be put into the main forum. So I am probably going to go ahead and open up a college related social group (no you don't have to be in college to join).

[Aubrey]

Well, I did actually set up a college support group. It is essentially to talk about all things having to do with any aspect of being a college student who lives with epilepsy. For example if you are having learning or test taking difficulties resulting from your epilepsy, you may be able to access accommodations, such as a private room or time and a half for exams. Good luck to all.

[RobinN]

Rebecca has a few accommodations set for her, such as:
-she is allowed her laptop for notetaking in each class
-she is allowed to take her books to a certain computer room where she can scan her chapters and convert them to mp3s,
-additional time for test taking in a private room.

School starts on Aug. 30th for her

Good luck in your next year Aubrey

[Aubrey]

Thank you Robin. And good luck to your daughter, too. My eyes are wide open and I am drinking a coffee w/half-and-half over ice. I know that is bad, but it is what it is. But I had to make an icon for the social group. My husband and I have taken a lot of college courses in a lot of subjects throughout our lives, and we have collected a lot of textbooks as a result. Some of them did not contribute to very successful endeavors. I assembled a bunch of them to represent as many subjects as I could in the photo, even though you can't see it because it is really small. Right now it is 1:32 AM and I am studying the credibility of witnesses to testify.

[rangerwvu]

I think this is a great idea.....I wonder if anyone in your schools student affairs office would be willing to get info re: this out to other schools? That might help increase the numbers/experiences so to speak and capture a larger group of folks? It would be great if they had some sort of college association list serve or something they could use to get the word out for you? I hope all is great with school this semester and best of luck!

[mglynn2]

Aubrey,

I am in college as well and I think this is a pretty good idea. I don't know anyone else my age with E but I have a good support group of friends and family. It's just different talking to people who actually know. I am going into my fifth year at Radford University (last year I was really sick, doctors couldnt figure out my meds and I had seizure after seizure and now I have to go back this year, super senior yay! haha) Anyway, I'm up for talking anytime, as long as I have time once school starts haha.

[Aubrey]

Wow, rangerwvu, that would be very ambitious, for me anyway. Setting up a group on here was a feat for me. LOL. I will see what I can do, but I don't have a whole lot of free time on my hands.

[rangerwvu]

You have done a lot already! I completely understand the time issue.

If you are ok with it, I could try to help out a bit by contacting several schools. Here is the list I could cover in case anyone else wants to contact others: UNC Chapel Hill, Duke, UNC Charlotte, Penn State, Queens College, West Virginia University and Virginia Tech as I know alumni from each of those pretty well and also went to school for undergrad and grad degrees at a couple myself. I could give them a call and find best person to e-mail info to, give step by step on how to navigate to group after getting on CWE site. It could take me a couple of business/school weeks to get it done but I can give it a go. If several folks could contact at least one school and/or support groups, that would really get the word out? Also, if you want to send me your e-mail address, I could add that to the info I send them if you would like to do that.

Not trying to get involved in the group as I am finished with school, but just thinking I would like to help you get started a bit as I do think it is a really good idea. Hoping that the more folks that know about it, there would be a higher chance of involvement by at least a handful of folks that would really appreciate the opp. Good luck and your break is over now, go study! LOL

[rangerwvu]

Hi,
Just wanted to let folks know that I found a group on Epilepsy.Com that is for college students.....Name is 'College Students Living and Learning with Epilepsy'. I had to do a search under the 'Groups' section to locate it....does not appear to have had a lot of activity, but it is there and may be an additional place to find folks who are in similiar situations and share with....thought you might want to know as it would be an additional resource. Not suggesting a replacement, just wanting to let you know it was out there in case you had not seen it yet.