Hope for the new year.

[jmmilliorn]

I've been quiet for awhile. Feeling sort of OK most days, but not really 100%. I've had another blood clot--this time in the left thigh, but it wasn't as bad as the one I had last March in my right calf. I recently went to the Cleveland Clinic for my checkup. My blood looked good, my anemia was slightly better, and my CT scan of the lungs was clear. That means I can continue to reduce the steroids and keep taking Cellcept. I'm back on Coumadin due to the recent blood clot. The only negative right now other than the clot is the shortness of breath. I'm going to get a heart scan to see if there is a blockage somewhere. I'm hoping its just the steroids and the weight gain (40lbs in the last year) causing me the SOB problems. We took a short trip to NYC recently, and I was paranoid the whole time, but felt pretty good except for getting tired from walking. Stairs knock me out of breath quickly.

I'm hoping 2012 is my year to get off the drugs and free wheel for a while. I'd love to get back in my old jeans, too.

I hope all my WG friends have a great New Year.

Mike

[Sangye]

Nice to see you, Mike. I'm sorry to hear about the repeat clot. I imagine they'll keep you on coumadin after that.

Best of luck to you in the New Year!

[mishb]

Great to see you back Mike.

I also share your hope for 2012, not only for you and me but for all of us on here. Wouldn't that be something?

I hope all is clear with the heart scan and I wish you a fantastic, healthy New Year.

[Al]

Thanks for sharing this, Mike. I, too, have strong heartfelt wishes for everyone's health and prosperity for the coming year, and I cannot help but think that it will be fine, indeed. And yet, I realize that how it all plays out is not entirely in our hands....

I’ve now stocked up on black-eyed peas. No collard greens at my local store--too late, or not enough customers, I guess--but they did have some nice looking butternut squash, That, and some spinach salad, and a risotto will have to suffice for a New Year’s meal.

Tomorrow night is a time for working, But tonight, Eileen and I were both home--what a lovely surprise! Some leftovers with a glass of wine, and a sort of date movie--it couldn’t be a better way to get in the mood for the change of numbers. I found the movie at the market, on sale for $3.99, so a cheap date, at that: A kind of bittersweet gallows comedy appropriate, I thought, for a weggie, The Bucket List, intelligently directed by Rob Reiner, and starring Jack Nicholson and Morgan Freeman. The film is really an odd couple's road trip story (I could imagine a version with Jack Lemmon and Walter Matthau). The scenes were terrific, and the acting wonderful; even Nicholson’s over-the-top style had a perfect twist of restraint that, in the end, took my breath away. And Morgan Freeman is, well, Morgan Freeman. Of interest to weggies, the hospital scenes were quite realistic, and the very smart script made me laugh a lot, until I cried.

But, then, it’s all a road trip, isn’t it.? And a bucket list. Now, I do not have the budget of a Hollywood film, so my personal bucket list will not include skydiving, a personal tour of the Taj Mahal, or wrecking half a million dollar race cars, But the road trip--to last for, I hope, years and decades, though Destiny has its own inscrutable plans--will have a few physical destinations, in addition to one that defines a different kind of arc through eternity. In the end, I realize that the journey that is infinitely more important that the arrival, for the trek will continue far past my mortal existence. We all dream, of course, and, as long as we have them, we are human and worth much. But bucket list dreams take on an extra intensity. I wish for the ability to affect public policy regarding awareness , research, and treatment of autoimmune diseases. To be on that path, with as many of my friends and traveling companions as are willing, would be my great hope for the new year.

My love to you all, and best wishes for your own journeys--

Al

[Dirty Don]

Happy New Year to all...like Al, I am here for the long haul whatever it may bring to me/us...you're all great people, it's so nice to get on here at night and read and 'listen' and participate with you all...cuz this is hard even with the people you love around you...we all need understanding...care...love...may 2012 be the best so far!!

[Natalie]

Hello All you beautiful people :) all the best for the New year :biggrin: xoxo

[mishb]

Just over 3 hours to go Natalie and we can bring in the New Year 2012.
Have a great night and I pray for health, happiness and good fortune to all.

Happy New Year

[Jaha]

To all:

It always, astounds me when I do get a chance to check in with this great group, the things I receive from all of you. Al, the Bucket List was an absolute wonderful movie. It's all about the song "I Hope You Dance"(Lee Ann Womack). I wish all of you good health and love for the New Year!
Jana:thumbsup:

[rif]

Wishing everyone on this great site a Happy New Year and hoping that 2012 brings health and happiness to all.

[Dryhill]

Well just over 7 hours to go for me, but I wish you all a Happy New Year and hope that 2012 is a far better year than this one.

Jim :hug3:

[Geoff]

A new dawn, renewed hope and a fresh start. Wishing you all every happiness and a wonderful journey throughout the New Year. :thumbsup:

[drz]

To all:

It always, astounds me when I do get a chance to check in with this great group, the things I receive from all of you. Al, the Bucket List was an absolute wonderful movie. It's all about the song "I Hope You Dance"(Lee Ann Womack). I wish all of you good health and love for the New Year!
Jana:thumbsup:

I like that song and asked they play it at my celebration of life when the time comes.

For those into 2012 congratulations. For those of us still hours away, best wish wishes for a great 2012.

2011 was a much better year for me, since I managed to get through the year with only ER and outpatient visits and no in-patient over night stays. Hoping 2012 is another good year for everyone.

[delorisdoe]

To all:

It always, astounds me when I do get a chance to check in with this great group, the things I receive from all of you. Al, the Bucket List was an absolute wonderful movie. It's all about the song "I Hope You Dance"(Lee Ann Womack). I wish all of you good health and love for the New Year!
Jana:thumbsup:

i love this song...it makes me cry

[Dirty Don]

i love this song...it makes me cry

Weggies don't cry...oops, wrong movie...!!! LOL

[Sangye]

This (http://youtu.be/Hnrsqf33MXA) is my pick for official Weggies Anthem. :biggrin1:

[gunnyl]

Happy New Year to the Group. May 2012 be a better year than 2011. I wish you all Health in this New Year!

GL

[pberggren1]

This (http://youtu.be/Hnrsqf33MXA) is my pick for official Weggies Anthem. :biggrin1:

I wish I had audio.

[Al]

I wish I had audio. Maybe they can remap you for music...?

Al

[pberggren1]

Maybe they can remap you for music...?

Al

I do have a music setting. I just don't have speakers that work for my computer.

[Al]

I do have a music setting. I just don't have speakers that work for my computer.
Can you use ear buds or headphones? I realize they won't make the floor vibrate, but neither will the dinky, pea-shooter computer speakers....

Al

[Widthofacircle]

Happy New Year Friends!!!!
Brendan

[pberggren1]

Can you use ear buds or headphones? I realize they won't make the floor vibrate, but neither will the dinky, pea-shooter computer speakers....

Al

I cannot use ear buds because I am deaf. I have not tried to use headphones, but possibly they could work too. I will have to look into that.

[Al]

I cannot use ear buds because I am deaf. I have not tried to use headphones, but possibly they could work too. I will have to look into that.

Yeah, I thought about this some more, and realized that, given your implants and kind of damage, ear buds would not work. However, over-the-ear phones might. I wouldn't bother looking at the expensive ones--their main advantage is better response in the octave above 8-10 kHz, which your implants presumably do not pass to the nerve anyway. You may have to tweak either the equalization in the audio driver in your computer, or the implant mapping, or both. This would be an interesting exercise in patient satisfaction and enjoyment. I'm thinking it would be fun for one of your docs to write it up for some journal. Maybe we could even get some audio manufacturers on board....

Al

[pberggren1]

Yeah, I thought about this some more, and realized that, given your implants and kind of damage, ear buds would not work. However, over-the-ear phones might. I wouldn't bother looking at the expensive ones--their main advantage is better response in the octave above 8-10 kHz, which your implants presumably do not pass to the nerve anyway. You may have to tweak either the equalization in the audio driver in your computer, or the implant mapping, or both. This would be an interesting exercise in patient satisfaction and enjoyment. I'm thinking it would be fun for one of your docs to write it up for some journal. Maybe we could even get some audio manufacturers on board....

Al

I think I can hear about 10kHz but am not totally sure. All I know is that the mapping that is done to my processors is done by electrical current and not with frequencies. I have a large pair of wireless headphones that I may try. I try to listen to music right now and even in the car it does not sound good.
I have tried some good CDs too and no good. It all sounds like noise.

[Al]

I think I can hear about 10kHz but am not totally sure. All I know is that the mapping that is done to my processors is done by electrical current and not with frequencies. I have a large pair of wireless headphones that I may try. I try to listen to music right now and even in the car it does not sound good.
I have tried some good CDs too and no good. It all sounds like noise.

As I say, some tweaking is in order. Hate that you have to go music-free.

Al

[Sangye]

Man, I really hate that you can't enjoy music. I hope you can find a way to make it happen Phil. :sad:

[pberggren1]

Man, I really hate that you can't enjoy music. I hope you can find a way to make it happen Phil. :sad:

Actually, I have not been able to understand or enjoy music for many years now. Since the summer of 2004. Oh well. Maybe some day again. It is not really important to me. When my hearing first started to go I was quite concerned and worried and got depressed. But now if the hearing does not improve from where it is now I will not be upset. I can live with what I have now.

Thanks Sangye.

[janNaz]

Wishing you all a happy New Year!

[Al]

Actually, I have not been able to understand or enjoy music for many years now. Since the summer of 2004. Oh well. Maybe some day again. It is not really important to me. When my hearing first started to go I was quite concerned and worried and got depressed. But now if the hearing does not improve from where it is now I will not be upset. I can live with what I have now.
Thanks Sangye.

Phil, music is a uniquely human activity and pleasure. And the enjoyment of it is likely therapeutic in may ways. This, in fact, is true even for congenitally deaf people. Do you remember enjoying music? I think there must be a way of bringing that back into your life in some way.

I'm interested in those implants. I do have any information on them, but I am guessing that they convert frequencies (in the form of air pressure changes) into a current--likely by varying impedance. This, then, could stimulate the nerve, that sends the signal to the brain by its own pulse frequency modulation, according to the triggering current. I would be surprised if they pass 10 kHz signals. Most devices are optimized for speech, so they provide a boost in the 4 kHz range. Even when they have a music setting, the upper octave is commonly lopped off. I'm also curious how the implants work together, in stereo. Much of the pleasure of hearing, and the sense of depth of experience, comes from subtle differences between the ears, enhanced by the natural movements of the head from side to side. The brain does some fancy processing to make this possible, well past the hearing mechanism itself. But it does require a differential signal between the two sides. Finally, a normal hearing mechanism relies on a good del of feedback. In fact, there are more nerves going from the brain to the ear than the other way around. Again, I don't know how your implants do their mapping, but I am supposing that they do not rely on a return signal. A lot of technical things to think about here, but in all cases I truly believe that it is worth your--and our--while to sort it out.

Al

[pberggren1]

I will have to find out if I can hear above 10kHz.

I can hear music right now but it just sounds like a bunch of distorted stuff.

I have tried all sorts of music and nothing sounds good.

I have alos tried listening with only one processor at a time. But things sound much better with both on.

[Al]

I will have to find out if I can hear above 10kHz.

I can hear music right now but it just sounds like a bunch of distorted stuff.
I have tried all sorts of music and nothing sounds good.
I have alos tried listening with only one processor at a time. But things sound much better with both on.

Okay, so at least we know that the processing is in stereo. As for the distortions, it is likely that there are a lot of true distortion out of the electronics. Also, because of the presumed one-way transmission without feedback, there is probably no correction mechanism. However, it is also possible that the distortion is at the input of the processors. An experiment would be to use over-the-ears headphones that block out most extraneous sounds and turn the level way down. Does the distortion go away or lessen? At which point in the volume setting does it get better or worse?

Al

[drz]

I think I can hear about 10kHz but am not totally sure. All I know is that the mapping that is done to my processors is done by electrical current and not with frequencies. I have a large pair of wireless headphones that I may try. I try to listen to music right now and even in the car it does not sound good.
I have tried some good CDs too and no good. It all sounds like noise.

I really miss being able to enjoy music and live theater too due to loss of hearing as this was my main recreational activity before Wegs. I was told by my ENT doctor that many people with cochlear implants can enjoy music again which gave me hope. The doctors that do the surgery though say I am unlikely to qualify for such a surgery. It also seems likely that a CI might make my hearing worse since my brain is starting to learn to translate the noise I do hear in my limited hearing ear into more understandable noise and the CI on my deaf ear might just miss things up and yield nothing but noise that my brain couldn't understand. I think I can sometimes sort of fill in the lost areas when listening to music if it is a familiar music. I might do better with a bone anchored hearing aid since that would eliminate the problem caused by fluctuations in the Eustachian tube. I need more evaluations though to see if I might qualify for that surgery too.

Good luck with the turning the CI to get the maximum benefit from it. I am glad you can hear some things again.

[Sangye]

I hope they can find a solution that helps you, drz. I feel so sad thinking of any of you with hearing loss like that. I've only lost hearing twice (temporarily) and it makes it a completely different world.

[Al]

I really miss being able to enjoy music and live theater too due to loss of hearing as this was my main recreational activity before Wegs.....

Though both music and (the verbal parts of) live theater both require, optimally, an effective hearing mechanism, they process the information in different parts of the brain, and need different adjustments of prosthetic devices, whether implants or traditional hearing aids. (Many people with hearing aids take them out during music concerts.) For one thing, such devices need to be, for music, very closely matched. This is less true for speech. Also, the frequency requirements are much different. It is true, as you note, that the brain can do some amazing processing to fill in "missing" material, especially through inter-modal participation of seeing and, sometimes, proprioception. But the best results come from better hardware. Part of this is because the brain likes direct stimulation of its first layer of audio processing. This is a "tonotopic" area-that is, specific areas of cells respond to specific frequenicies coming from the cochlear nerve. damaged cochlea do not fire at all frequencies (usually the attenuation is the greatest in the higher frequencies, those which largely characterize musical timbre). You might try a conduction-type (i.e., bone-anchored), if available. While the upper frequencies will still be deficient, the bass end will be much better than speech-optimized hearing aids.

Al

[Lightwarrior]

This (http://youtu.be/Hnrsqf33MXA) is my pick for official Weggies Anthem. :biggrin1:

I concur Sangye, this should be our anthem. Drz, I also want this at my celebration of life when the time comes, I want this for my children.

[pberggren1]

Distortion for music seems to be the same at most volume settings.

[KathyB]

I'm in tears -- happy tears -- after reading this thread! I Hope You Dance is a personal favorite song and the perfect anthem for us! I married off my eldest son in October in the midst of all this WG craziness. As host of the rehearsal dinner (and single mom who raised all my sons myself), I spoke to everyone about our family's life including struggles, current illness, togetherness, and ultimately, hope for the future. Coincidentally, I created a framed picture of the lyrics to I Hope You Dance! Each guest also received a scroll with the lyrics at their place setting. There wasn't a dry eye in the place! We all felt the hope in the message! While I fully appreciate the beauty of Leeann Womack's vocals, the words are what moves me! I hope we all dance in the new year!

KB

[Al]

I'm in tears -- happy tears -- after reading this thread! I Hope You Dance is a personal favorite song and the perfect anthem for us! I married off my eldest son in October in the midst of all this WG craziness. As host of the rehearsal dinner (and single mom who raised all my sons myself), I spoke to everyone about our family's life including struggles, current illness, togetherness, and ultimately, hope for the future. Coincidentally, I created a framed picture of the lyrics to I Hope You Dance! Each guest also received a scroll with the lyrics at their place setting. There wasn't a dry eye in the place! We all felt the hope in the message! While I fully appreciate the beauty of Leeann Womack's vocals, the words are what moves me! I hope we all dance in the new year!


Once again, Kathy, the big world is a small world....

Al

[Al]

Distortion for music seems to be the same at most volume settings.

I had a talk with a guy that designs implants, Phil. According to him, some of your distortion might be eased in a non-noisy environment (and it helps, a lot, to listen to music that you already know), but that most of it is due to the limited resolution of the system. (This will improve, perhaps dramatically, when then next generation of implants becomes available. The rumors are that they will uses an infrared transmission scheme, with fiber optics for much increased resolution. However, it is unknown when they will be commercially available. Also in the works are software improvements, though just in the area of speech processing (which is pretty complex with these devices). One of the problems for music is that implants while theoretically capable of passing signals up to 8 kHz, are not so good at frequencies below 400 Hz, or about middle G and lower. This is, of course, where almost all music fundamentals lie. So, at best, you are hearing only the harmonics. In some cases, where there is some intact cochlear mechanism, implants can be augmented by conduction-type headphones for a more satisfying experience. And, of course, if your neighbors don't object, floor-vibrating loudspeakers can give you a visceral impact that the implants cannot provide.

I plan on staying on top of developments here, Phil. I'll let you know what I find.

Al

[pberggren1]

Thank you very much Al. I really apprecitate this. I find it neat that someone else is interested in the same things I am.

I will continute to try and listen to music but will not put too much pressure on myself to do so. I can also hook the processors directly to the TV or stereo and have almost no noise being picked up by the microphones.

[Al]

Thank you very much Al. I really apprecitate this. I find it neat that someone else is interested in the same things I am.

I will continute to try and listen to music but will not put too much pressure on myself to do so. I can also hook the processors directly to the TV or stereo and have almost no noise being picked up by the microphones.

How is it when you listen to the TV or stereo? Can you understand the words? How about the music distortion?

Al

[pberggren1]

I can understand most speech when listening to the TV in my room. It is a much better TV than upstairs. If I hook up the processors to the TV then I can understand the speech a bit better and there seems to be a bit less distortion.

When I listen to music it still just sounds like a bunch of gobbldy gook.

[Al]

I can understand most speech when listening to the TV in my room. It is a much better TV than upstairs. If I hook up the processors to the TV then I can understand the speech a bit better and there seems to be a bit less distortion.

When I listen to music it still just sounds like a bunch of gobbldy gook.

What I am wondering is whether the distortion is less with music that you know well. If so, listening to it over and over many times might "calibrate" your brain. But I suspect that a real musical might have to await the higher resolution devices. Again, I plan to stay on top of technological developments.

Al

[vdub]

New year started out really great for me. Got to lead my little daughter down the aisle to get married....
http://www.wasem.com/sa-wed/wedding.html

[Al]

New year started out really great for me. Got to lead my little daughter down the aisle to get married....
IrfanView HTML-Thumbnails (http://www.wasem.com/sa-wed/wedding.html)

Très cool..! Nice photos. Was this in California?

Al

[vdub]

Spokane....

[Al]

Spokane....

Ah. Looks like the Davenport....

Al

[vdub]

That would be the one.....

[Lightwarrior]

New year started out really great for me. Got to lead my little daughter down the aisle to get married....
IrfanView HTML-Thumbnails (http://www.wasem.com/sa-wed/wedding.html)

What a beautiful little daughter you have. Congratulations

[Al]

I can understand most speech when listening to the TV in my room. It is a much better TV than upstairs. If I hook up the processors to the TV then I can understand the speech a bit better and there seems to be a bit less distortion.

When I listen to music it still just sounds like a bunch of gobbldy gook.

A couple more questions for you, Phil. When you dream, do you converse? "Hear" music? If so, does it sound like you remember it? Can you recall specific sounds accurately and without distortion? How about imagining sounds consciously? Can you conjure up, say, a scale, or even individual notes, played on piano, or guitar?

Al

[Sangye]

New year started out really great for me. Got to lead my little daughter down the aisle to get married....
IrfanView HTML-Thumbnails (http://www.wasem.com/sa-wed/wedding.html)
Congratulations! What sweet pictures. I've never seen someone cut a cake like that! LOL

[pberggren1]

A couple more questions for you, Phil. When you dream, do you converse? "Hear" music? If so, does it sound like you remember it? Can you recall specific sounds accurately and without distortion? How about imagining sounds consciously? Can you conjure up, say, a scale, or even individual notes, played on piano, or guitar?

Al

I think I hear everything normal in my dreams. Not too sure though.

[Al]

I think I hear everything normal in my dreams. Not too sure though. I am curious about this. In my own dreams, I can see quite clearly, which I can't in real life, even with glasses, but I've never though thought about whether I am wearing glasses or not. Also, though my taste buds are bonkers, I can enjoy a delicious meal in my dreams. But my main interest,in your situation, is whether your brain still knows what music is all about (or "aboot")--in which case, it can maybe be trained to hear more than the implants give it.

Al

[pberggren1]

Maybe I should try and dream about pool seeing as my eyesight is the shits too.