Guest guest Posted February 9, 2000 Report Share Posted February 9, 2000 Hey everyone, here it is. If there are questions that you can't answear, that's okay. I know it is kind of long, sorry. I appreciate you taking the time to fill this out. You can reply at the crew, or if you prefer at clubransom@... I welcome everyones responces, even if you ar not fully deaf. How long ago were you diagonised with NF2? What assistance devices do you use(including ABI's)? How do you communicate with people?(sign, speechreading, a pen and tablet ect..) What caused your deafness?(obviously NF2 and AN's. I mean surgery, radiation, just woke up deaf, ect...) How much notice did you have?(ex. I've had one An removed almost three yeasr ago. I've had that long to prepare) What steps did you take to prepare for deafness? When you learned that a result of NF2 was deafness, how did you react? How did you make the transition from being a hearing person, to a deaf one? ---------------------------------------------------------------------------- ------This next part, has no relevance to my paper. I'm just a curious because I'm someone who would like to have a relationship, but feel that there isn't anyone out there who wants to get invovled with a guy with NF2 How many of you are married or engaged, or in a serious relationship? Did that happen before you were diagonised, or after? If there are more questions, I will send them to you. Thanks again for your help. Josh Ransom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2000 Report Share Posted February 9, 2000 Survey > > >Hey everyone, here it is. If there are questions that you can't answear, >that's okay. I know it is kind of long, sorry. I appreciate you taking the >time to fill this out. You can reply at the crew, or if you prefer at >clubransom@... >I welcome everyones responces, even if you ar not fully deaf. > > >How long ago were you diagonised with NF2? 1990 > >What assistance devices do you use(including ABI's)? I wear bi-cros hearing aids, having flashing lights in house for phone and door bell. Have applied for a hearing dog, have amplified phones, carry a portable amplifier. > >How do you communicate with people?(sign, speechreading, a pen and tablet ect..) At present, no problem if they talk slow. > >What caused your deafness?(obviously NF2 and AN's. I mean surgery, >radiation, just woke up deaf, ect...) Deaf on right side since AN surgery in 1975; 3 cm tumor on left is taking remaining hearing > >How much notice did you have?(ex. I've had one An removed almost three yeasr >ago. I've had that long to prepare) First AN was 1975, but I did not learn I had NF until 1990; since then it was okay until about 1996, when trouble started/growth. > >What steps did you take to prepare for deafness? Work on learning sign, finger spelling, lip reading, am lousy at all three; got a TTY, phone, flashers, applied for dog > >When you learned that a result of NF2 was deafness, how did you react? Refused to accept it will happen to me > >How did you make the transition from being a hearing person, to a deaf one? Have not done that yet > >--------------------------------------------------------------------------- - >------This next part, has no relevance to my paper. I'm just a curious >because I'm someone who would like to have a relationship, but feel that >there isn't anyone out there who wants to get invovled with a guy with NF2 > >How many of you are married or engaged, or in a serious relationship? No me, husband walked out when NF walked in > >Did that happen before you were diagonised, or after? > I have to tell you this Josh; there is a 65 year old lady on here, who has NF2 and had a masectomy; and she just met a great guy on the Internet; She established the relationship before she told him her problems; she was fortunate in that he was very understanding and stood by her; they are out there, but it's not easy. >If there are more questions, I will send them to you. Thanks again for your >help. > Josh Ransom > > >See what's happening for NF2Con 2000! >http://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2000 Report Share Posted February 10, 2000 I hope this helps, Josh! << How long ago were you diagonised with NF2? Since the Fall of 1983 at 19 years of age. We were not aware of the NF2 before that. It just popped up! -- What assistance devices do you use(including ABI's)? Closed captioned TV, flashing doorbell signaller, flashing fire alarms, flashing phone light, strobe light alarm clock. I do not use any " hearing " devices like hearing aids and such since I am totally deaf. Hearing aids will not help me. And, to tell you the truth, I am perfectly happy being a deaf person. (although I do miss music!) -- How do you communicate with people?(sign, speechreading, a pen and tablet ect..) I use ALL ways to communicate with others. I use sign, I speechread, I use pen and paper. I've even been known to use the palm of my hand as a writing surface! And lest we forget, I LOVE TO TALK ) -- What caused your deafness?(obviously NF2 and AN's. I mean surgery, radiation, just woke up deaf, ect...) Hmm...for the left side, I was already deaf when I had the first surgery. That's what prompted me to think something was wrong. One day, I picked up the phone, put it to my left ear (which is not usual since I'm right handed), and heard nothing. For the right side, I had surgery and one month after it, I'd lost the hearing in that ear. -- How much notice did you have?(ex. I've had one An removed almost three yeasr ago. I've had that long to prepare) Let's see, my first ENT appointment was in September, my first NS appointment was in October, my first surgery was in October (the left side), I lost ALL hearing, my second surgery was in December (the right side). These were ALL in 1983. Since then, I have had 5 more surgeries on the right side related to tumor regrowth. -- What steps did you take to prepare for deafness? Between the ENT appointment and the NS appointment in 1983, I took about 5 lipreading sessions at the local hearing and speech center. I also took a beginning ASL class at the local Deaf school. I then had my surgeries and became totally deaf. After becomming deaf in the fall/winter of 1983, I recuperated for a while and went back to local University classes in the fall. WITHOUT AN INTERPRETER! After 1 year there, I transferred to Gallaudet University in WDC and graduated from there in 1990. --When you learned that a result of NF2 was deafness, how did you react? I don't think that I really thought about it much. My doctors told me POSSIBLY, not definately. So, I guess I wasn't really mad. I do remember, though, that at the beginning between September and October (the ENT appt and the NS appt), I did break down a couple of times. I thought " what am I going to do if I'm deaf? " Now it's a moot point. I'm perfectly happy being who I am! ) Sometimes it's a pain in the neck. But I get through! -- How did you make the transition from being a hearing person, to a deaf one? That's life. You go with the flow. It wasn't always easy. But I made it. I'm happy with the way things are. In fact, and I've told my father this, if they find a way to restore my hearing during my lifetime, I'd opt out. There are worse things in the world than being deaf. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2000 Report Share Posted February 11, 2000 Survey > > > > > Hey everyone, here it is. If there are questions that you can't answear, > that's okay. I know it is kind of long, sorry. I appreciate you taking the > time to fill this out. You can reply at the crew, or if you prefer at > clubransom@... > I welcome everyones responces, even if you ar not fully deaf. > > > How long ago were you diagonised with NF2? January 1989 > > What assistance devices do you use(including ABI's, phone light flasher, some TTY, CC tv, baby monitor, hearing aid , volumn increase for impaired phone > How do you communicate with people?(sign, speechreading, a pen and tablet > ect..) some sign, pen and tablet, speech > > What caused your deafness?(obviously NF2 and AN's. I mean surgery, > radiation, just woke up deaf, ect...) infection and later woke up deaf for remaining on left. 1st half on right sick and plane flight, remainder is gradual so far on the right > > How much notice did you have?(ex. I've had one An removed almost three yeasr > ago. I've had that long to prepare) one AN removed 3 years ago and had been deaf 6 years prior to finding I had NF2, then had 8 years to prepare > What steps did you take to prepare for deafness sign language > > When you learned that a result of NF2 was deafness, how did you react? very sad > > How did you make the transition from being a hearing person, to a deaf one? sign language, changed phones, got new tv, bought baby monitor > > ---------------------------------------------------------------------------- > ------This next part, has no relevance to my paper. I'm just a curious > because I'm someone who would like to have a relationship, but feel that > there isn't anyone out there who wants to get invovled with a guy with NF2 > > How many of you are married or engaged, or in a serious relationship? married > > Did that happen before you were diagonised, or after? after > > If there are more questions, I will send them to you. Thanks again for your > help. > Josh Ransom > > > See what's happening for NF2Con 2000! > http://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html > > > > > See what's happening for NF2Con 2000! > http://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.