A question for those of you who are actively participating in the trial. When you go for your visits do they let you see the results of your audiogram, or is it all kept on strict confidence so as not to influence you're behaviors? I'm starting next Tuesday, wish me luck!
That would be fantastic, @yellowboy!! I'm presently not as disabled as many people here, but having only one functional ear is annoying (I am very thankful I do have one ear that still hears normally!!). At other times, it's kind of nice to be able to shut out what I don't feel like listening to.
Agree that M.D. forums benefit from folks like yourself helping the newly diagnosed. Unfortunately, M.D. is idiopathic and it seems that everyone is a bit different. I had issues with the people on forums that have had M.D. for 20+ years and had nothing but negative things to say. To the newly diagnosed, hearing this is devastating to say the least. All of that said, I pray that SPI-1005 has big success in the near future! Many folks looking around the planet watching and waiting
I don't know I have never asked. All I know my bad ear is useless during most of the test. In fact when they do the "talk over test" - where a woman speaks sentences with other people speaking in the background I don't hear a single one of the 35 sentences in that ear. I take a nap during that session !
Can someone give me an e-mail to contact the essay and ask if there is something planned for Europe? Thank you
I doubt it because my clinic said everybody has to wrap it up by the end of April, so the information and results can be submitted to the FDA for approval . I will ask though the next time I go to the clinic.
I am looking forward to next Thursday! My left ear comes and goes. Some days I can understand words/sentences if it's a good day. Most days I plug it so I don't have to listen to the high pitch distortion chaos. Good luck Tuesday MrE!
Sure wish plugging my noisy ear helped me! I use an ear plug when in a noisy environment (restaurant, group meeting, etc), as even though my hearing is almost completely gone, I still have hyperacusis in that ear when the local environment is noisy. If I don't plug it, my tinnitus ramps up & becomes even more annoying.
You made me laugh @MrE. My testing has never included people talking over the top of each other, but I do get a round of loud static in my good ear while words are recited in my bad ear. I'm told to repeat whatever I hear, but all I hear (besides my tinnitus) is a bunch of mumbling. A snooze during that round would be preferable!!
When I was first diagnosed, my ENT was clear that my hearing would gradually decline over a period of years until I was deaf in my MD ear. He indicated full deafness usually takes about 10 yrs to occur. Sadly, for me, it was more like 7 yrs., but I've been hard on my body, & there's a price to pay for that. In retrospect, I sympathize w/ my mother who had "old age" bilateral hearing loss. We all got really tired of her saying, "What?" all the time then telling us we were being too loud. I'm there now & appreciate it when my family/friends are patient w/ me. That said, sometimes the path of least resistance is to passively miss the conversation.
My Dad had Meniere's, and other than him not being able to hear, you'd never know. My Dad quit saying excuse me, could you repeat that, and started smiling and nodding his head like he heard. Ha! I have done the same thing more than once. Dad's probably looking down and smiling.
Great story! Like Father like son. I"m sorry you both had to deal w/ this though. My dad was diagnosed w/ MD but then his doctor back-paddled & said it was something else. Both of my parents had hearing loss later in life so I'd say my hearing heredity isn't the greatest. None of my siblings have hearing loss yet, but I'm the oldest so I guess someone has to pave the way!
@Mark55 If I had qualified for the SPI 1005 trials, Roseville would have also been my location except I'm 2 hrs south of there instead of 2 hrs north. We could have compared notes...still trying not to have regrets here.