What HAL does for the hearing handicapped

[cindiedee]

Hello to all my HOH buddies! Yes! Let's all go on a cruise! We will be on the Gem April 19th (NYC-Barcelona) and the Diamond Nov.23rd (Bangkok-Sydney) - y'all want to go along???????? Would love to meet up with folks who UNDERSTAND what we live with - nothing makes me happier than to than to just sit in silence and read a book - I think because my brain works correctly then - no straining to distinguish speech, no loud noises - just me "in my own little world" as the audiologist said.

 

Interesting article on recruitment - never knew there was a specific word for it - so now I feel even worse - deaf as a post and I have recruitement! Sheesh! Anything else coming my way...........let's see, I also have RA so my bones are just throbbing today (yes, we live in south Florida but it is in the 40's today and the old bones just can't take it).

 

I am not a candidate for cochlear implant - I am not sure why (perhaps because I will be totally deaf according to the doc) - they just said it wouldn't do a darn thing for me. Like someone above said, you can't enhance what isn't there.

 

As for social settings - a BIG PITA! All my friends and family know that I can't hear or distinguish speech and most are very good about it although I constantly have to ask them to look at me when they are talking to me. I know I miss most of what is going on - but then again, I have "my own little world" to retreat too! And like I said, DH is so good about helping me - my 'not so dear EX-DH" wouldn't help if God came down and told him too - he always said I was "defective" because I couldn't hear - and that is just one of the many reasons that after 20 years of marriage, I said "bye bye" (he heard me loud and clear on that one!). :p My now (16 years) "forever DH" was kind about it (and everything else) right from day one - he has such a good heart and I am so blessed to have him in my life.

 

No, my deaf phone from the state isn't a captioning phone - it is a GIANT phone with a ringer that not only sound like a fire alarm, but it also has giant blinking lights on it. It has a volume that is outstanding but doesn't help the speech problem any - but I don't have to use a receiver to my ear and that helps a little. Like I said, I don't talk on the phone much at all - it is just too hard. I let DH do all the talking and if he isn't here and the phone rings, I just let it ring - I don't even bother to answer it. I did get a new cell phone last year with special technology but again, it is useless for me - I do have it because I don't want to be out and about and have car trouble or an accident and not have a phone. It would probably be a challenge to call the police or AAA or something 'cause I could talk and say what is wrong but I couldn't know what they are saying back. If my cell phone rings (rare occurence 'cause most know I don't use it), I just hand it to DH to answer - if he isn't with me, well it just doesn't get answered!

 

When we are in a dining room on a cruise or in a restaurant, I always try to pick my seat (no pun intended) - if I can find a seat that backs up to a wall, things are much better for me - it seems to cut down on some of the background noise. I also have problems with hot weather - I don't know if it is the air pressure or what but if it is very hot and humid, it is like someone stuffed my ears with cotten and I totally lose what little hearing I have - anyone else have that?

 

Ok guys - let's cruise - where and when????????? We are almost always game to go, depending on price of course - I am a bargain hunter and never pay full price - and never will! (Also, we won't go on Carnival, MSC, or Costa - I know there are some good things about them but they just aren't for us) - any of the other cruiselines and we will be there! :D

 

Cindie

[Golfette]

My husband is the one who "speaks up" for me. He has been doing it all our married life. Strangely enough, though, he has now become part of the problem. Because I had so many HOH friends and contacts over the 9 years I worked with HLAA (Hearing Loss Association of America), he began to speak loudly as a matter of habit over a long period of time. Now he does it automatically.

 

Therefore, when he is sitting next to me at a dinner table, all I can hear is his booming voice talking. I've tried to get him to "lower the volume," but he can't. He's tried, and even when he tries to talk softly, he is still "booming." My new $6 Thou. digitals synchronize together so I can't turn one side off like I used to when he was talking.

 

I'd love the idea of a cruise together some day. It would be wonderful if HLAA held one of their yearly conventions on board a ship. It is such a unique experience being surrounded by only HOH people.

 

Hang in there everyone ...:o Golfette (Lisa)

[etoile]

Hi everybody, hope you don't mind me joining the thread! I am actually a sign language interpreter but I am also losing my hearing. Right now they have told me that I need a set of digital HA's at $2500 per ear, won't that be fun?! I am also a student at Gallaudet University (college for the deaf) but the student insurance doesn't cover HA's for some reason...now that is weird!

 

From an ASL interpreter and HOH person perspective, I have often wondered about hearing loss on cruises. I was able to get the captions turned on for the TV on my last trip, so that was nice! We prefer small tables (2-4 people) so I don't have any trouble following conversations. But the thing that worries me the most is the emergency signals. Of course everybody does the drills, but when a real emergency comes around, will they make sure the deaf people have gotten off the ship safely??

[Golfette]

Welcome Etoile!

 

I sympathize with you over the cost of hearing aids, especially for a student. HLAA has worked for years to try to get insurance for hearing aids with very limited success. It's as though the government and insurance companies view hearing aids as some kind of expensive gadget and not as the lifeline to the world that it is for HOH people. Insurance covers glasses, but not hearing aids. Without my hearing aids, I could not have worked as a paralegal, but instead I would have been on disability. I will never understand it.

 

As to cruise ships and hotels notifying HOH people in emergencies - somehow I don't think we should count on it. If you don't cruise or travel with a hearing person, make sure you get a fire alarm (at the very least) from any hotel/motel you stay at.

 

Good luck to you.

[LAFFNVEGAS]

You have hit on a subject that has irked me for all the years Tom and I have been married and that is why most Health Insurance companies to not pay for or at least partially pay for HA. My best friend who is a shcoll teach now has to wear them in both ears and her teachers insurance did paya a small amount but sadly all the insruance companies we have been covered by over the years has never paid anything:(

[Juanita462]

This is so incredible - others that have the same problems and really

good information too.

 

Let me tell you about the cost of hearing aids. when an aid broke

down the tech had to send it back East for repair - I asked what

I was supposed to do without it in the meantime - he just shrugged.

I asked him how he would like to hve to do without his glasses for

2 weeks. So he allowed me to have a loaner - for which I had to

give him a cheque for $250 in case I didn't bring it back. I asked

him if that covered the cost of replacing the aid and he said yes.

So, I said if the aid costs $250, why am I paying well over $2000

for a new one. He never answered.

 

Do you take a loaner with you on a cruise? I always do as I have

had breakdowns during cruises. On a 50 day cruise one aid broke

down and I started using my spare - that broke down too:eek:

so I had to finish the cruise with half of my hearing. Last cruise

the tubing came apart but fortunately I had a spare ear mold with

tubing with me and used that.

 

Lisa - my DH does the same thing - his voice is so loud that I can't hear anyone else. I think we will have to work out a secret signal so that he will know to lower the tone - he doesn't realize that he is almost shouting.

 

If you want to sit at a table for 2 in a quiet location try 70 or 71 on the rail on HAL ships. We discovered this on our last cruise and it was great - a really quiet area and lots of fun because we got to see everyone that came by heading for their tables and many would stop and chat - also the maitre d' often stopped to chat too.

 

Yes! a cruise for HOH people - wouldn't that be fun.

 

Here in Canada we get nothing from the government for hearing aids - our local rep told us that the CNIB gets everything and is a rich organization but the deaf and HOH get nothing. I finally get a disability reduction in income tax which helps some but only got that after my hearing dropped to 25% of normal.

[LetsDoACruise]

Juanita - I believe you both point out why insurance companies don't pay out for hearing aids. The aids themselves are not so expensive to make, but the time to do a fitting, hearing analysis, testing, etc takes up the most of an audiologists time. When you factor all that in the aud puts that into the price of the hearing aid. Insurance companies won't want to pay thousands more than what their worth. From our side, if the HA's are x years old then our hearing may have changed and we may require another round of testing and possibly even different aids. $200 isn't going to put a dent in a $6K total. I see it from both sides, and I'm probably still as mad as Lisa is that HA's aren't covered like glasses are. :mad:

 

I am fortunate in that my insurance company will pay a percentage of my medical/dental not covered by traditional plans and reimburse some of it pre-tax. It makes the cost of the hearing aids not hurt me financially as much. They call it Flex spending..

 

As for a spare set; yes, i still have my analog set. They're 12 years old and still work very well. If i want to listen to music I use them as the digitals just can't reproduce the bottom (bass) sounds like the analogs can. The analogs have bass but they can't produce the power and clarity that the digitals can. I also carry spare parts like you do. I'm telling you, with all the parts & stuff i carry for my HA's I'm MUCH more high maintenance than any woman, lol.

 

etoile - More than welcome to join (besides, i'm the newb here). To add to what Golfette said (and i agree with her), you may want to let others in surrounding cabins (if you meet them) know of your situation so they may be able to alert you if something happens. Just a thought... Good luck to you in your schooling. You're many steps ahead of some of us since you already know how to sign.

 

As for cruising together i think it would be fun. Y'all do some serious cruises in a year's time so we'd probably have to plan something in 2020, haha. Really, though, if anyone is interested I could try to persuade DW to hold off Hawaii next year and say "LetsDoACruise.":rolleyes:

-Dave.

[Sundagger]

I hardly know where to begin. I'm glad this thread got going, because the hearing loss threads on the Disabled board on CC are few and not many replies - it seems to be primarily for the mobility handicapped.

 

Dave - I have a Captel phone and it is useful in some circumstances - it partly depends on the quality of the captioner, which varies. I have a TTY, but some the companies that have had a TTY line in the past have discontinued it (and others don't pay any attention to it). Email is my lifeline.

 

I had to leave a management job about 12 years ago due to my hearing getting to the point of not being able to conduct meetings or to use the phone effectively. It was sort of a mixed blessing - I got an analysis position that allowed me to work 8-10 hours a day at my computer, partly at home, partly at the office. It didn't pay quite as much, but it was the most enjoyable job I've ever had. I retired last May and kind of miss doing spreadsheets and reports.

 

My audiologists (and I STRONGLY urge anyone looking for a hearing aid to go to one - not to a chain store) have said that a cochlear implant isn't appropriate for me at this point. Actually, I had been buying a new pair of hearing aids every 3 or 4 years and just budgeted $4, 5, 6K for them. Now that I'm retired I don't feel as though I have to keep up with the latest & greatest anymore. And I no longer have income sufficient for new ones all the time anyway.

 

When I go on a cruise, I always wear my current pair and take along my previous pair as a backup. The old ones are *almost* as good, but aren't quite as automatic as the latest ones.

 

Regarding safety - on HAL, when you request the ADA package from the Accomodations and Access office, you are put on a list of handicapped that goes to the ship. Obviously to tell them to install the equipment, but also you are put on a list that the Guest Relations department monitors. I keep getting letters on board asking if I need assistance with my wheelchair! I haven't bothered to tell them I don't have a mobility problem, since they *allegedly* assign someone on the staff to assist you in case of emergency. I don't know if they actually do, but I'm sure that you could make your situation known to Guest Relations and they would assign someone to make sure you are out of your cabin.

[Fruitcake]

But the thing that worries me the most is the emergency signals. Of course everybody does the drills, but when a real emergency comes around, will they make sure the deaf people have gotten off the ship safely??

 

My friend's husband is in a wheelchair and he has discussed this very issue with the hotel managers on several ships. They have assured him that the ships have passenger lists (and cabin numbers) of those with handicaps who would need assistance in an emergency. They have a team assigned to take care of these people. Now I don't know if it's just mobility-impaired people or if it includes other types of disabilities. But I think when you make arrangements on a cruise and you inform them of your special needs, your name must go on the list.

[OldinJersey]

just found this thread via a link posted on the disability section-so glad about that. My dh is hard of hearing and has many of the issues people are discussing. the recruitment situation is rough. He has tinnitus in his "good" ear and loud noises send it out of this world. he is fully deaf in the other. A few years ago he had sudden nerve deafness when he woke up. nothing helped. I sent him a link to this thread and hopefully he'll connect with everyone. He has perfect pitch, or what's left of it. (no clue-I'm tone deaf) Off key singing always was uncomfortable. Our daughter is a trumpeter and he has to take off the hearing aid AND leave the room when she is visiting home and practicing. The volume causes pain. Awful situation but wow, exciting to learn there are others with this, a name for it too.

I think his new hearing aid uses blue tooth to connect his cell phone directly to his hearing aid. not sure how well it works, since he keeps it at the office.

[Planetsis]

Wow, I hope you don't mind me jumping in on this thread. I'm HOH as well and have been since I was around 4 and had a dangerously high fever from Typhoid. (Yeah, you wouldn't think that would happen in modern times, but it does.) It's nice to see so many others talking about the challenges of being HOH, and especially with adapting to digital hearing aids.

 

To keep on topic, let me say that on board HAL it was very frustrating trying to watch important announcements (such as disembarking instructions) without captioning on the TV. They really, really should at least broadcast printed instructions. If my DH hadn't been with me, I would have been clueless about what to do to get off the ship. I guess I would have waited until someone kicked me off, eh? :o

 

I think my biggest frustration with being HOH is trying to hear children. I can tell my nieces and nephews over and over again that they have to speak clearly and loudly, but instead, they seem to speak softer and look away from me. Ack!

 

Someone please tell me more information about captioning phones. I've never heard of them, but I'm highly interested. I avoid phones and only use them if I absolutely have to. Most of my communication is via email or some other IM program from my computer. I wear the expensive $2500/each digital hearing aids that have been programmed for my particular loss, but I only wear them when I'm working or in situations when I absolutely have to hear what other people are saying to me. They aren't comfortable to wear all the time, and I get frequent ear infections caused by wearing them. And of course when I have an ear infection, I can't wear them at all. Very frustrating.

 

Anyway, it's nice to see others who share the same challenges.

[etoile]

Planetsis, you can look up some information about the CapTel captioned phones here:

http://www.captionedtelephone.com/

 

Unfortunately, it looks like you are in Massachusetts, and CapTel isn't offered there. Louisiana is the only other state that doesn't offer CapTel. But perhaps if you can make a local call to another state's relay service, you could use theirs?

[Planetsis]

Thanks for the link! I'll check it out.

[Planetsis]

...snip...

 

If i want to listen to music I use them as the digitals just can't reproduce the bottom (bass) sounds like the analogs can. The analogs have bass but they can't produce the power and clarity that the digitals can. I also carry spare parts like you do. I'm telling you, with all the parts & stuff i carry for my HA's I'm MUCH more high maintenance than any woman, lol.

 

 

Dave, you might want to check out the Wydex Diva digital hearing aids for listening to music. I have these and there is an extra channel programmed specifically for listening to music. I have to say that these do a much better job than any other digital HA's I've ever had.

[etoile]

Since we are talking about hearing aids, can I ask - do most of you use standard BTE or the new "open fit" models? I think this is a choice I will have to make when I get mine.

[Golfette]

Etoile - thanks for the link to CapTel. I've been out of contact with the HOH world for about 8 years and just heard about this phone. Will check it out.

 

Planetsis, when I'm home alone, I leave out my aids too, but I wear them all the time otherwise. I'd be absolutely lost without them. I've been fortunate enough not to have ear infections though.

 

When I booked our cruise with HAL, it never occurred to me to ask for the ADA package. Every time I see something about the ADA these days, it's related to mobility impairment. Once again, I thank you Sundagger for bringing this to our attention.

 

Because such a small percentage of people are hearing-impaired (apx. 10% of the population, with a small percentage of those being deaf), there is very little recognition by the hearing world of the problems of being hard of hearing. Deaf - they can understand. Hard of hearing, they don't have a clue.

 

Whenever I used to ask for ADA assistance, they would offer a sign language interpreter. I do not understand sign language. I am not deaf, I am severely hearing impaired, but I live in the hearing world. Even if I were to try to learn sign language (and it is not easy), no one in my world understands sign language.

 

It's a frustrating world to live in, but it helps knowing you are not alone.

[Sundagger]

The Captel phone is really high quality. In brief, there is a small 2"x4" LCD screen (although they have just come out with an option to use a computer screen) that displays the captions. They scroll as you continue through the conversation. You can see it at the link etoile posted.

 

To make a call, you simply punch the Caption button and dial the number. When a captioner at your state relay office or the national captioning office is available, the call goes through. You speak to the person at the number you dialed - they speak to you AND the captioner hears what they say (so you don't have to actually understand the called person) and repeats it into their speech recognition software. The software then translates that into the captions that show up on your phone display. So the captioner (communications assistant they are usually called) doesn't hear your voice, only the voice of the person you called. They don't have to type the conversation as they do with a TTY, just repeat what the called person says.

 

If you are familiar with speech recognition software - it leaves a lot to be desired. The comm assistants are trained in the use of the software and are quite proficient, but there still are mistakes made. Because I had made an online transaction on ETRADE while on the Oosterdam, Etrade declared a security situation. When I got home, I called them through the Captel phone and had to answer numerous security questions. Due to a minor error by the captioner, I flunked the security test and had to do all sorts of things to get back on their good side. However, it really is useful in certain situations. Etrade has discontinued their TTY line, so it's either email or the phone now.

 

To receive a call with captions, the person calling you dials the Relay number, then your number. Again, the comm assistant hears them and repeats what they say into the speech recognition software. The comm assistant never hears your voice.

[Sundagger]

Whenever I used to ask for ADA assistance, they would offer a sign language interpreter. I do not understand sign language. I am not deaf, I am severely hearing impaired, but I live in the hearing world. Even if I were to try to learn sign language (and it is not easy), no one in my world understands sign language.

 

It's a frustrating world to live in, but it helps knowing you are not alone.

 

I've been looking at ASL sign language courses locally, but have the same problem - no one I know understands ASL.

[Sundagger]

Wow, don't lurk for a full day and the whole world goes by.

I was just wondering, for all of you that feel that your "head is in a vice" when the noise is loud; do you have a limiter on your HA's (Hearing Aids)? My Aud is able to send noise into mine and i can tell him when enough is enough. At that point he knows that that is my level of tolerance and the HA's clip the sound if they get louder than that. If i stand next to a fire truck as it's blaring it sounds loud, but most of the amplification from the HA's has been turned off. I'm probably only hearing what's coming through my head. :eek:

 

-Dave.

 

Hi Dave,

Thanks for joining in - everyone's contributions have been so helpful and comforting. My hearing aids do attenuate loud sounds, BUT I do have a severe recruitment problem. When I was next to the fire engine, I "clawed" my HAs out, but that didn't help a whole lot - the sound was still overwhelming.

 

It's frustrating that people say "can't you turn up your hearing aids?" Yes, I can turn them up so that people at the next table could hear what's coming through them, but that doesn't help clarify the speech.

 

Glad you can use your captioned phone at work. Where I worked until retirement last year had a very sophisticated phone system and the IT people wouldn't allow any non-company owned equipment to be attached through it. I got my Captel through a Federal/state program - it's technically a loaner. Did you have to purchase yours or was there a program to provide them where you are? (I understand that the program I was able to use no longer exists)

[whiterose]

Wow what a great thread. I started to lose my hearing over 40 years ago and finally went completely deaf. Ten years ago I got a cochlear implant which is a huge help - not normal hearing but a LOT better than no hearing.

 

Cindiedee - I think you should check again with your ENT. The criteria for getting a cochlear implant have changed in the past few years. Having no hearing at all means that an implant is your only hope. You have to have a really unusual cause of hearing loss to be turned down for a CI - bony growths that block the ears or some other unusual complication.

 

Assistive Listening Systems: We usually sail on Princess and they have listening systems in all their ships now. The trick is to find a staff person who knows what you're asking for. Years ago on the old Rotterdam V they had a system in the show lounge so I bet all the newer HAL have them now. The problem is that the ships don't have any signs telling you about them and often the staff know nothing so they tell you they don't have a system or its "broken" etc.

 

Emergencies: Believe it or not a Federal Passenger Vessel Advisory board is currently working on this problem. Trying to find a way to notify people who cannot hear well in case of an emergency. It will probably be some kind of flashing light possibly combined with a shake awake type of feature. Cruise ships will be required to install them once the standards have been set.

 

PLEASE EVERYONE. WHEN YOU GET ON BOARD, TELL THE PURSERS DESK THAT YOU HAVE A HEARING LOSS AND WILL NEED SOMEONE TO COME AND GET YOU IN YOUR CABIN IF THEY HAVE AN EMERGENCY. All ships keep a list of people in wheelchairs who will need assistane in an emergency but those of us with hearing loss seem to be very shy about sharing our problem - seems like nobody notifies the staff. BUT YOU HAVE TO TELL THEM.

[Juanita462]

I found some good books on ASL at our local bookstore - first DH and I

learned the alphabet and then made up common phrases using the

material in the books and memorized those. We practice them so that

they will be automatic when needed.

 

My favourite one is "we have to leave - right now!":)

 

The nearest center for learning ASL is an hours drive each way - and in the evening - so was not an option for us.

 

You are right, the problem is that very few hearing people can use ASL so you are restricted to your spouse and any family members that will make

'the effort to learn it. Must say I am somewhat disappointed that more of

our family members are not learning the sign language. It would be immensely helpful to us.

 

On the ships I have asked if anyone on staff has learned sign language - have not found anyone yet. We often teach some of the staff a few basic signs and they seem keen to learn them - especially the signs for "I am right and you are wrong!"

Given the age factor on HAL ships they would be wise to have a staff member that is proficient in ASL.

 

Thanks for the tip about being on a list in case of emergency - didn't know about that.

 

Am going to check further on all this great information that is flowing my way re aids, phones etc. Thanks everyone - it is much appreciated!!

[OldinJersey]

I just tried to look for free online ASL classes. There are a whole bunch and I'm sure some else here will know more, but in the meantime this looks great, since it has video. Families here could start lessons online then we can do a hard-of-hearing ASL practice cruise adventure!

 

http://www.aslpro.com/

[etoile]

Don't forget, just because nobody you know NOW knows sign language, doesn't mean you won't meet some wonderful signing people when you are learning!

 

It is very rare for a deaf/HOH person who doesn't know sign to want to learn if they are already an adult, so I commend you all for at least having the interest!

 

Also, many people find that life is so much easier once they know sign. In the US, the ADA mandates that everything be accessible, which means you could have an interpreter wherever you want. How many of you haven't been to the theater in a long time because you can't understand the plays? With an interpreted performance, you could!

 

I don't mean to sound like an ASL evangelist! But if you guys are serious about a HOH ASL practice cruise, let me know because I will be there. Oftentimes I see groups formed on Cruise Critic to go on cruises and I never think I'd fit in with them, but it would be a blast to sign with everybody! There is http://www.deafcruise.com/ but I have never been on one of those. I did interpret on a cruise once, it was a ton of fun!!

[Golfette]

Welcome Whiterose. Telling the purser when you board that you are HOH is an excellent idea. If more HOH people did things like this, I think businesses would start to pay attention.

 

Alas, I too find that even when a hotel, movie or whatever has the equipment, no one knows how to operate it, where it is, etc. Again, this is because HOH people either do not know about it or are not asking for it. If the equipment was asked for regularly, it would be kept in better condition because, hopefully, more people would be complaining if it were not.

 

As to learning ASL. It depends on who you want to communicate with. If you want to remain a part of the hearing world - go to stores, talk to people, live a full life - learning ASL after adulthood is not going to help much. If you need to speak to someone in a library, in a bank, in your broker's office, at the gas station - no one there will know ASL. If you just want to communicate with your significant other and a few family members, and they are willing to put in the time to learn more than a few words, then possibly it is worth it.

 

Etoile, I don't know what the situation is now, but when I worked with GLAD and HLAA, we found that the culturally deaf were not open to those of us who might learn ASL in maturity. In that case, one could not look forward to meeting a lot of new deaf people and "widening" one's circle.

 

I guess I want the impossible. I want to hear & understand my hearing friends. I find myself drawing more and more away from them and this frightens me. I do not have a large family to turn to - it is just me and my husband ... and my friends. :(

[Planetsis]

I am using in the ear (ITE) model with the plastic part fitted. I used to use the BTE model, but was self-conscious about visibility and wanted to wear my hair really short. I know the ITE does show a little, but it's not as obvious as the BTE.

 

(By the way, I mispelled the manufacturer above. It's actually Widex, not Wydex. Doh!)