Re: Support ...
Does this apply only to the U.S. of A. Judy?June in Toronto
Re: Support ...
June:Absolutely not! Just think of all the Blephros that are out there who have no computer. The support groups and Conference that I attended in California were woefully lacking in patients who had on-line access. Any glimmer of light (certainly not flourescent :) that can be shed in the direction of those who are alone in their fight for sight must be done by those of us who understand and are willing to help. e-mail me if you would like a copy of the form I'm using. Remember how it felt when YOU knew no one who understood. Judy
blkmn36@earthlink.net --modified by Moderator-JB at Thu, Mar 15, 2001, 17:25:36
Re: Support ...
Judy, I'm not sure what you want me (us) to do. I read the report by Louis Reno and it talks about a buddy phone system.
Our beb support group meets once, sometimes twice per year. I have offered my name and telephone number as a telephone contact for other beb'ers through this group - no takers. My name and tel no were put in a newsletter and asking others if they were interested in getting together (more often) in small groups, local to our area - no takers.
I do have one young man (in his 30's) telephone me very week or so - he has beb and called me after contacting the local Dystonia support group. He says `I'm his support group' - he doesn't attend any meetings, although I believe he did join BEBRF and gets the newsletter.
What to do now?June in Toronto
Re: Support ...
Many, especially after first contracting BEB, go into their shell of fear. After a while the realization that, oh no - this i with me for the rest of my ife. All I'd like people to do is make your area rep's aware of what can be done Judy
Re: Support ...
Judy ... I don't believe there are any area representatives or support groups in the North Idaho (or the whole Idaho state, for that matter) nor the Spokane area. Don't know what I could do.Sall in North Idaho near Spokane, WA
Re: Support ...
Hi Sally,
We hope to come to Spokane at graduation time. How far are you from Spokane?
I copied down what I thought was your email address, put itin my address book, but when I tried to email you, I got a mail delivery sub. So I must not have it right.
Evelyn
Re: Support ...
Hi Evelyn ... About 50 miles from Spokane, more or less depending on which end you are in.idaholt@nidlink.com I couldn't get your e-mail address to work either. Maybe you can send it to me. Sally
Re: Support ...
Thanks, Sally. I wrote your address down, and will try it again.Mine is evied@earthlink.net
Evelyn
--modified by Evelyn at Sun, Mar 18, 2001, 02:45:55
Re: Support ...
Judy, everytime I have tried to contact my rep, Chris Runo, I keep getting my emails back that it's not deliverable. Almost everyone's phone number is long distance for me and that could really rack up. That's why I rely on email to keep in touch with BEBers.graceanne in port orchard
Re: Support ...
Grace Anne:They have a new e-mail address but as I've never had any luck getting a response back from them except by phone that's the only way I've talked with them. cdrun53@msn.com I just sent 175 of the forms to them yesterday. Judy
Re: Support ...
Grace Anne, although I have telephone service through AT&T, I use 10-10-811-etc. for long distance. It is 5 cents a minute 24/7 and makes calling long distance very affordable.
Re: Support .../Phone Cards
Some of those phone cards that are sold in stores are very reasonable, also. A friend told me today that she had purchased one at Costco (I believe she said a $20 one, but not certain) ... anyway, she said it figured out to 5 cents per minute. I am going to check into that as our rate is 10 cents per minute, 5 cents on Sunday.Sally in North Idaho
--modified by Sally - in - Idaho at Sat, Mar 17, 2001, 23:20:52
Re: Support ...
Judy, will see what I can do about this...Joanne M. San Diego, CA
Re: Support ...
In response to the postings regarding support for BEB sufferers, I would like to say that this BB was very instumental in helping me accept this disorder, while not feeling alone. I think as you work through the issues, your initial needs are lessoned. As a result, people move on. I don't think it has anything to do with "us" in terms of not being able to retain people either in the support groups or on this BB.
Re: Support ...
I think that is true. Some of the people I've talked to who have found something that is helping them lead a fairly normal life say they just don't feel the need for BB, but do get the newsletter. In 12 Step programs that happens and honestly I think for many there does come a time if you are doing well you need to move on and not get stuck. For others who truly feel they can still be there to help others even when they themselves are doing well, it is a blessing for them to help others and they are not stuck. I think it is different for everyone. I love hearing from people in remission or who are doing well. Since I've started support group and been involved with BEBRF I get a ton of calls every month from people who really need someone to talk to and I sure remember being in that stage, so it isn't a burden to me. It helps give meaning and purpose for the things I have and still go through. For others that might be too much stress to get all those calls. We all have to do what feels right for us to do or not do.
Re: Support ...
Delaine ... I think you are correct in stating that many people just need to move on, while others can stay around and support new "victims." After our son was killed in 1978, my sanity (and possibly even my life) was saved by becoming involved with a support group called The Compassionate Friends (for parents who have lost children). I only attended the large group meetings a few times, but met some very special mothers that I became close to and kept in contact with for many years. I felt a need to "pay back" for what I had received, and was on call to talk with or visit newly bereaved parents who asked the directors for help. This can be terribly draining and emotional, but serves a purpose. I no longer do this on any regular basis, but am always available if asked. I do feel that I have grown in spirit and strength and become able to get along without the continual support of persons in the same situation.Some people do not have the time fo give to others, and some people just plain and simply do not care to share of themselves. I hope to stay around here as long as I can be of any help to those struggling with BEB, even though I have accepted and am adapting to the limitations it has placed on me. Sally
Re: Support ...
Judy, what I did was to e-mail our beb reps, who live out of town, and ask them to ONCE AGAIN to try and get a phone buddy system going, or to see if anybody wants to meet for a coffee in local areas for support. Our beb support groups meets once, perhaps twice per year only - but they do have a meeting at the end of April (I can't go as I'll be away then), so perhaps they can mention it at that meeting. I'll keep tryingJune in Toronto
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