Note from MaryLee
The decision to get a first hearing aid is a difficult one. There are all kinds of unfortunate associations that a person makes with this milestone. For most people, the critical time is reached in late middle age. And I chose that way of putting it very carefully! We find different definitions nowadays of what constitutes "middle age". Growing up, I used to think of it as 40 to mid 50's. Now I'm sure that I will be middle aged until at least age 75!
The crisis of needing a hearing aid in "middle age" forces us to face up to some physical changes that we are trying hard not to notice in the mirror and family pictures. We are definitely not getting younger and we don't need a piece of hardware poking out of the ear to remind people of that, right? Maybe.
But other considerations force us to face evidence of a problem that might age us in other's eyes much more than any piece of hardware attached to us. We tend to shy away from people who are difficult to understand well. At a dinner or party we managed to stay busy with details and avoid having to sit down in a noisy atmosphere that is difficult for us. We have to ask people to repeat - if we have the nerve. Or bluff and hope to be able to find out from someone else just what was said and missed.
Eventually someone close to us decides it is time to stage an intervention, as it is known now. And so we get told - you need a hearing aid.
Even if you know they are right, it isn't easy to accept. Especially if you can still use the phone well enough - - sort of. And you can hear the TV just fine - - with the volume up just a bit. Yes the others complain about that, but they are just sensitive, right? And your best friends are clear as a bell; you understand every word they say - -if you talk to one of them at a time. And if it's not so noisy around you. And the kids keep that music down. Your hearing is not all that bad, so why get a hearing aid?!
Indeed, why get one? All it would do is make it easier to hear better. That's all.
That's it! That's the whole reason. It will make it easier to hear better. And when you hear better, you are back in the social scene, your friends and family don't have to holler, the TV can stay at a normal level, the voice on the phone won't be at the end of a tunnel, and the aging frown of stress will disappear from your face. Here - have a hearing aid! It's the latest rejuvenation discovery!
The Tech Brief -from Carla Frizzle
Topic: Nokia 5100/6100 Series Cellular Phone w/ Neck Loop LPS-1
Cost: Phone $100-$180 (depending on model you choose),
Neckloop $106 from Dial-Tone.com, higher
elsewhere, and only available via mail/internet/phone orders through places like Radio Shack, Sprint, or Nokia.
Service: Sprint PCS (digital) Month to month contract, Free and Clear Plan, many other air-time plans to choose from both via Sprint or other wireless service companies.
I was in great need of a new cellular phone, as my old one had outlived it's use. My previous one was an Audiovox phone with a H.A.T.I.S. sillouette. It worked and served me well over the years. However, being the tech head and gadget queen that I am, I needed more from my next setup. I decided to try a Nokia 6185 w/ a Nokia neck loop.
I've had this phone for a couple months now. I purchased it at a local Radioshack under a deal with Sprint PCS service. The Nokia neck loop I got through the internet from Dial-Tone.com with the help of a wonderful gentleman there named Jim Donovan.
I chose the 6185 for it's flexibility of multi-bands (uses digital and analog services) and its connectivity in the near future with my Palm Vx for wireless email. You can get the lesser cost Nokia phone 5100 series and other choices of service, without all the bells and whistles that I needed, and get the same quality and sound results.
The neck loop comes with some standard sized larger (675) zinc-air batteries to run the amp/mic in it. It needs three and states that they only discharge during use. After about 2 plus months and 18+ hours of talk time (conversations), my first three are still going strong! The nice thing is, it takes the same batteries that my hearing aid takes which lightens the battery packing when on the road.
All you need is to plug the neck loop in, slip it around your neck and talk. No need to hold the phone or neck loop mic near you. This is a great feature when using it in crowded stores. I place mine on my optional belt/pants clip while in use and it looks like your talking to yourself! Everyone scrambles to get out of your way because they think your nuts! Just in time for the holiday shopping rush!
The phone itself runs 3.5 hours of talk time and over 24 hours in standby mode between charges. It comes with a charger and takes about 5 hours to recharge so you can plug it in while you sleep. The model I have also comes with a vibrating ring setting... after all, what good is a phone if we don't know someone is calling us? Check with your seller about these features on other models (adjustable sound volume - not ringer volume- and vibrating ringer option) I am not sure if they are exclusive to the higher priced 6185 or not.
The phone has a volume control which I have set very low (1 out of 5) and my hearing aid is set to about 2. That is something that impressed me. I have a phone with some room to grow on both ends as my hearing declines. The sound through the neck loop is clear as a bell, better than any land line home phone I've had, and the neck loop has a built in microphone for hands free phone usage. It's more comfortable to wear than a sillouette as there is nothing added behind the ear.
Now that I have glasses too, I don't need to stack any more optional equipment back there than I already have!
The only thing that I don't like about this, is that I wished Nokia used a bit better connector than they did. The one that plugs into the phone sticks out a bit and more care must be taken, as it's rather fragile. People make low profile connectors but I am not sure why Nokia didn't allow for them in the phone design.
So, if you are looking for a cellular phone, have a mixed db loss of about 80-85 or less, use a BTE w/ a strong T-coil H.A., this phone may be what you need! There are also a number of wireless service providers in your area to choose the air-time package that best fits your needs.
Happy teching! -Carla
Our 22 day vacation to the New England . . . Hazel Tucker, Louisville
. . . . . .states and those nearby....total of 13 states was great. We took several tours. Those on busses did not furnish listening devices. They used headsets with a mike which came out garbage for me. One tour guide in Strasberg, Pa. where we toured the Amish museum gave me her script to follow, which worked well.
We attended the Miracle of Christmas play at the new 2000 Millenium Theatre in Strasberg, Pa which seats 2,009 people. I was furnished with a listening device and seated on the second row. It was perfect. We might be able to get scripts for bus tours in they knew in advance we needed one. The tour of New York City kept Bill busy with notes informing me of what we were just about to see. Worked well! We saw and did so much - perhaps some day I can share more of the trip. The foliage was beautiful and we fell in love with the beauty of Vermont.
National Day of Hearing
May 6, 1999
(Reprinted from SHHH News) Join us to celebrate 20 years of Self Help for Hard of Hearing People. SHHH Chapters and Groups throughout the nation, let's celebrate in this most meaningful of ways!
Nancy Nizankiewicz SHHH development director, mailed each chapter and group forms for registration on the SHHH National team. Be sure and register! Packets, banners, and all manner of help will come your way. Working together across the country, we want to screen the hearing of 20,000 people.
We are proud to say that our national spokesperson for this event is former Surgeon General C. Everett Koop, M.D., Sc.D. SHHH is collaborating with national organizations of audiologists, speech pathologists and dispensing audiologists to bring about this huge effort for better hearing. Screening will be available on that day or by voucher system throughout the month of May.
For more information, contact Nancy Nizankiewicz at the National office.
NOTE: The Bluegrass Group has already begun work on this one. Derbytown is at the talk stage of preparations - with thought being given to whether we should really use Derby Day in Louisville for this effort. If your area is not involved yet, or if you are in an area that doesn't have a local group, you can still help! You can assist an audiologist or hearing aid dispenser on May 6 - - and you will probably meet some very interesting people while providing a valuable service.
News Report recap by Paula Esterle
A recent report on Louisville's television Channel 32 News discussed a drug trial in the treatment of a condition that leads to some cases of sudden hearing loss. Persons with AIED (autoimmune inner ear disease) experience sudden changes in their hearing due to a malfunction of their immune system. The body attacks normal tissue as if it were foreign such as it would attack a virus or bacteria. According to the otologist quoted in the report, Dr. Derebury, the immune system produces chemicals harmful to the normal tissue. These chemicals are destructive to the inner ear.
To attempt to arrest this process, a chemotherapy drug, methotrexate, is currently being used in drug trials across the country. If successful, the treatment will not be able to restore lost hearing but will be able to halt the damage. The drug has been said to reduce the symptoms in other autoimmune disorders such as rheumatoid arthritis and psoriasis. This indicates methotrexate's effectiveness on the suppression of the immune system. The treatments could produce undesirable side effects such as liver toxicity, hair loss, and loss of appetite. These are said to be reversible. While not a cure for all types of hearing loss, this could be an important treatment in preventing future loss of hearing for many of us. What did the doctor say?
What Did the Doctor Say???
Did you know that it is the doctor's responsibility to provide a way to communicate with you? Under ADA, the Americans with Disabilities law, the doctors office or hospital must supply an interpreterr or whatever other method you need to understand what he is telling you and to be able to communicate with him.
It is best to tell the office this when you first make the appointment and also to offer information on what type of help you need and where to get it. If you use an interpreter, you may tell them where to find one, or if you need to have the exam interview in print, they may arrange to use a laptop computer or even a court reporter, depending on how involved the communication will be. Also if the expense for the doctor is over $250, half of it will be tax deductible for him. He may not know that.
We need to insist on having a third party interpret or type communication for us, rather than having another family member attempt to do it. Too often the technical nature of information makes it difficult for a friend or relative to completely convey the details as intended.
If you can understand well enough in a quiet setting and prefer to it that way, it is still wise to share the fact that you are hard of hearing. Not every doctor knows how to speak to us! Don't assume that skill was imparted to him in medical school. In most cases, it wasn't. And he will want to know how to make himself understood. As with most other people, it is best to refrain from telling them outright what is WRONG with the way they are speaking to you. Instead tell them HOW TO do it correctly. Planning ahead and adopting a positive attitude should get excellent results.
How to start a group
in your town . . .
Everybody wants to have a group or chapter in their city. So they look around and try to see if there is one somewhere and then of course when they don't find one, they complain. Why does Louisville have one, and we don't? Even Danville has one! If they can put one together, surely we can. So they tell their rehab counselors, audiologists, and any other person who will listen. And sometimes they even find the state coordinator's name and address somewhere and write to her.
And then comes the real shocker. We CAN have a group. But we have to do the work ourselves! Ouch. Many months of silence follow. Eventually someone asks again "HOW do I do this???"
WE are SHHH. It isn't a place or an office or building or even a convention. It is people. You and me. To start a group, you just need people. Where do you find them? Welllllll. If your state coordinator knew the absolutely perfect answer to that, she would have groups from the Mississippi to the Appalachians.
We all know the people are out there, but finding them is another matter. Mary Lee can tell you who the national members are in your area. That is a start. You can ask the local rehab counselor for the hard of hearing to give your phone number and address to her clients with the message that you want to start a group. You can do the same with audiologists and hearing aid dealers. This is a matter of being a little more forward than your recent hearing loss usually leads you to be. But remember, you will be talking to people who specialize in hearing loss and have an interest in helping.
After you have about half a dozen names, it is time to call or write to them all and set up a get-together. Notice I did not say "meeting". Just a social time to get acquainted and talk about common concerns. It is best to have this get-together in a public place, like a library meeting room, or at a church or hospital. You will find any of these ready to help you arrange and time and place suitable for your group.
And then what does a group do, if they decide to have regular meetings? Most groups want to have monthly meetings with a speaker. For the first year or so it can be very easy to find audiologists, doctors, hearing aid dispensers, rehabilitation counselors, or speakers from the KCDHH etc. to talk to the group. After that you will have to get creative in finding things you want to know about. Many meetings will be most enjoyable as a rap session to give the group a chance to sound off about their concerns and difficulties. And from those meetings you will get ideas about what you want to do next.
When you first decide you may want to form a group, ask the national office, or your state coordinator, to get a "Pre-kit" for you. This is supplied by national for all beginning groups and is chock full of information and helps in getting started.
Don't be afraid to take the first steps in getting started. Remember this new group of yours is PEOPLE. It's purpose is to do whatever they want it to do. The best part of SHHH groups and chapters at the local level is making friends with all these wonderful people!