transabled.org

This post is ironic Sean – I was planning to email Dr. First today and check the status of his study.

There must be AT LEAST 9 people who read this site, who live with BIID, that have not yet contacted Dr. First.

Come on people!! PLEASE, contact him and make this study count! :)

He really is an easy man to speak with and I was able to gain a lot from him. It was a great experience!!!

Plus, it’s a good feeling – talking about my BIID with a professional who took me seriously made me feel less crazy.

Hi.
I’m fairly new here, stumbled across the site a few weeks ago and initially found it incredibly interesting. I have been reading faithfully since, and have even gone back and read a lot of old posts.
I don’t think I really have BIID, but that may be because I have only just heard of it. I have a strong desire to be mute. I have never felt connected to my voice.
I don’t know if this ‘counts’ as BIID?
I have emailed Dr. First.

Thank you for this site, it has been both interesting and a comfort to me.

My apologies, I didn’t think about the other Chloe when I entered my name.
Different person, sorry.

Thanks for that comment Bracy! I concur :)

Yep – same here – the talk was definitely worthwhile.

Let me add some encouragement to those who haven’t talked with Dr. First. He is totally professional. The questions that he asks are probing and it will take some time to do the interview–so plan ahead. However, the interview is not difficult and Dr. First listened and was very supportive.

THIS IS A RARE CHANCE TO BE HEARD! Will anything change as a result? Maybe not or maybe yes, but this is probably the best way to do something about BIID.
For those not in the US or aware of some of our laws: medical privacy is very strictly enforced and Dr. First is very respectful of one’s privacy.

Please, if you haven’t contacted him, go ahead and do it. I am very glad that I did the interview with him, it has even helped me deal with BIID a little bit better.

@ChloeD. Welcome, ChloeD!

~ Chloe :o)

I can only echo what the others have said. If you haven’t done so already PLEASE contact Michael First even if you don’t think you really have BIID – that way maybe you’ll find out.

He’s so easy to talk to. He understands us perfectly.

Also, having spoken to Michael First, and if you can speak french, please consider participating (anonymously) in the french study being carried out by a team in Paris. This is a first for France and can only help, adding another “voice” to the many others.

Peter

I talked with him maybe a month ago now. As everyone else said he was very easy to talk to. He made me think about a lot of events and thoughts I had in childhood that I hadn’t thought of in many many years. Things that now make soooo much more sense in light of the BIID thing.

It was really a good experience and I’ve continued to think about a lot of the subjects and ideas that were brought up.

I send him a mail, it took me more than an hour write it and I almost erase it because it was a huge step.. And I’ve done it OMG!

Well done, Lulu.

I promise you won’t regret it.

Quoting:
“Thanks for contacting me. This is a telephone interview study lasting up to two hours so it sounds like it would not be possible to participate.”

I think is better…

Huh? I don’t understand

Dr First calls you, he pays the phone bill. All you have to do is find a 2 hour timeslot when he can call you.

I made email contact with Dr. First, it never went beyond that. I was insisting on a written interview for privacy issues and exchanges stopped at that point. Was he only interested in paraplegic manifestation of BIID?

@Ronald – I know what you mean about privacy. I decided the potential benefit to myself and others outweighed the potential negative ramifications of participating. Also, I don’t believe *TRUE* anonymity can be maintained using email.

Since this is a scientific study, it has to be statistically valid, meaning every participant has to participate in the same way. I offered to meet in person, but that wasn’t an option because it’s a “telephone interview study”. Thus, a written interview would also not qualify for inclusion in the results.

I suppose you could call and suppress the caller ID. The call is not recorded, but Doc does take notes during the interview.

Also – this round of the study is concerned with non-amputee manifestations.

I can see why those of us who don’t live alone might have difficulties with a phone interview, due to the risk of someone walking in mid session, but I don’t see what possible harm it can do otherwise, and even that risk can be mimimised with a bit of planning. I don’t get the issue, unless it one of poor spoken English?

It is indeed correct, this round of study is for non-amputee BIID, but that does not limit it to paraplegic manifestations alone. This is simply because the earlier study focused solely on amputee BIID and this is a follow-up study.

@Ronald, FWIW, the ethics committee refused to have interviews conducted via email or Yahoo!Messengers, specifically because of privacy issues, citing that emails or logs can be printed and misplaced, etc.

I think it’s safe to say I have the nosiest parents/family possible when it comes to phone conversations etc. Dr First was very obliging and only called when I knew no one would be home to ask who it was that called.

I can second what Sophie said. Dr First was able to arrange a time when I knew I would be home alone. It was 9.30am is time and 2.30pm my time, I knew my husband wouldn’t be home from work until 5.30pm so we had 3 hours and only expected to use 2. In the event he called me 3 minutes late and appologised a lot!

The interview is very low pressure, if there are any questions you don’t like you just don’t answer.

I had no problems with confidentiality. Dr First will call you (to save your phone bill) but I trust him not to look up my name and address etc from having my number. On the phone he could hear my voice but he never even asked my name. By e-mail or anything else internet based he’d have my IP address if he wanted it, and by post he’ll have a name and address for me. I was very happy with the telephone method.

I know my situation was a little different, as I have already came out to my wife. She sat next to me the whole time, minus when I wheeled outside to smoke, while I was on the phone. It was nice because she was able to better understand somethings. I had him on speakerphone, and when he asked a question that she was curious about, she kind of nodded along. It helped me answer a lot of her questions to, as when I came out to her, I was so nervous about her rejecting me I had a hard time organizing my thoughts. I think having her there with me helped me answer some of the questions, but also made me think twice about answering some. When he asked about any sexual abuse as a child, my wife was visibly upset as she knows that is something I don’t like talking about. Both my wife and Dr. First both said I didn’t have to talk about it if I didn’t want to. All in all, I would do it all over again, except I would of asked him some more questions.

I figured that privacy were an issue. It could have been conducted through snail mail. My concern was somebody walking in at my office in the p.m., and although I have come out to my wife, she would no doubt here my side of the conversation, and some questions may have come up with regard to current marital feelings. I figured my cell phone would have melted before the 2 hour session would have been up.

I would be more than happy to participate simply for the sake of Dr. First hearing as many perspectives as possible. Maybe next time.

In my case, I made the call, on my cell, in my car – so as to be away from both home and work. The phone did need to be plugged in before the call was over, but I was prepared for that. My parking place was not the most private, but I could have picked one that was more so.

I was just wondering what is the present situation of this study?