It repeals a long standing prohibition in NYS on the for profit sale of hearing aids by Physicians.  This prohibition was enacted to protect the rights of consumers by ensuring that Physicians do not benefit financially from the sale of products that they order or prescribe.

Let’s be realistic here,  do we really want our Internist prescribing hearing aids and not being required to have additional training?  Will this mean that the medical assistants will program the aids?  Can you imagine the waiting time in a Doctors office?

I don’t know about you but the last thing I want, are for more hearing aids to be left in bedside drawers.  I have yet to meet a parent who told me their Pediatrician diagnosed a hearing loss.  More often than not, I’ve heard of Pediatricians telling parents that the child will outgrow their chronic ear infections or fluid.   I’ve rarely heard of an Internist referring their senior patient to get an audiological.  Hearing loss comes with old age so why bother sending them for an audiological?

Could you imagine if a Physician was given the right to sell the drugs they prescribe to a patient or receive financial benefit from the referral of a patient to a clinical lab? The laws that are in place, were established to protect consumers from the possibility that personal financial gain could interfere with the Physicians independent medical judgement.

I bet I know what you’re thinking? Well, hey, Audiologists make a profit and receive financial benefit.  Selling hearing aids is a business just as selling cars is a business. However, do we want even more professionals involved in the selling of hearing aids? and if so, will they be required to be trained?  Well how about this, why isn’t the Senate spending more time on getting our hearing aids covered by insurances? or why doesn’t the Senate require the hearing aid manufacturers to control the prices of hearing aids?

I say, lets focus on the real issues and stop looking for ways to spread the specialty. Let’s focus on getting hearing aids fully or partially covered by insurances so that children and adults who are hearing impaired or late deafened can have access to the technology.

Call the Assembly switchboard this week at 518-455-4100 or contact your representative.  Oh by the way, I did not see one single phone number for the hearing impaired or deaf.  Strongly recommend you call either through relay, video relay and/or make sure to tell them you are hearing impaired or late deafened.   To contact a NYS assembly person:     http://assembly.state.ny.us/mem/

To Access the legislation:    http://open.nysenate.gov/legislation/bill/S3788-2011

Please pass this message to others who might be interested

I thought to myself, I’m working too hard, I’m way too stressed, I just need a rest.  Outside of the fact that I had just returned from vacation, how much rest does one need?  In anycase, I did not rush to panic but rather waited a few days.  And as my world began to lean more to the left, my vision of everything in front of me appeared to move while my head stood still.

As the days came and went, my head went from positional vertigo to just feeling spin offs while sitting perfectly straight. I started to feel like the balls in a bingo machine being rotated.  B4, I15, O54.   Being hearing impaired and working in the field of deafness and hearing impairements, I know all too well that there are several planets I could be headed for. However, I’m still hoping that I’m just over stressed and that everyone I’m looking at is unbalanced and I’m fine.

I try not to panick because panic just clouds our ability to control and be in charge. So, here I wait for my Neuro-Otology appointment, which by the way, would have been a three month wait had I decided to go with the Dr. who takes my insurance.  My choices were wait or see another Dr. and pay up front only seeing maybe 1/8 of what I pay in.  But at this point, I want to know what it is I am dealing with. I feel as though I’m at a black jack table and not knowing what the next card is.

Is it Menieres? Vertigo? or worse scenario, a tumor?  Would I rather have menieres?  What type of choices are these?  In anycase, I will try to keep my sense of humour in all of this because without it, I’ll certainly go into panic mode and land up on Planet Mental, probably taking meds that would make my symptoms even worse.

To be continued.

So it only goes to show that eventually my searches found the Say What? Club by way of one of the founders – Bobdeafie.  He invited me to join the group, so I did.  Next thing I knew I was getting lots of emails from people from all over the world who were like me – hearing impaired, deaf, hard of hearing, cochlear implant would be’s etc… 

Over the years, I’ve made many friends through this group – some lifelong.  I’ve headbutted with a few, cried along with them, and had many many laughs.  It’s the laughter that keeps this group together, the sheer joy of laughing about things that happen to people, and knowing because of your hearing loss, it’s either happened to you too, or could quite likely happen.  It’s a group that puts our hearing loss into perspective, helps us when things get bad and you’re down because of it, opens your eyes to the many devices that are out there to help us, and simply gives us a sense of belonging.  Coming home. 

It must be pretty good as 14 years later the SWC is still a huge part of my life.  

One of the most exciting things about the SWC is the people I’ve met.  First came Bob and Ling who came and stayed with me any years ago, then Joanie from New York, then Steven from San Francisco.  I met up with Rick in Australia, and Emily from New Jersey has been out here several times now. And just yesterday, Jeff  and his daughter was in Auckland for the day so I was able to show them around. 

Last year I won the SWC Scholarship which enabled me to travel out to meet up with so many at the Philadelphia Convention.  It was a really special time putting faces to the names I’ve been corresponding with via email for 15 years.  One of the most exciting things to happen to me in my life.   I came home to New Zealand, with some great memories, ones that I’ll keep forever. 

The SWC opens up the world as well.  Not only do we have people in America, but also Australia, New Zealand, England, Finland, India, Canada, and South Africa.  We learn about different countries and cultures, and we know if we’re ever travelling in those parts of the world, there is a friendly face waiting for us to meet them.  

I would recommend SWC to anyone who is wanting to find out about  hearing loss, or just wants to ‘hang out’ with people who you know will understand the frustrations that we come across in our every day lives when one’s hearing isn’t 100% perfect.

For more details… Head to… http://www.saywhatclub.com/ 

I look forward to getting to know you !

 Cheers

Robyn

Most of us are aware that a Deaf culture exists. Simply visit a state school for the deaf, and observe students and teachers communicating mostly through American Sign Language (ASL). Or sit in on a coffee house “chat” with a local Deaf social group, and notice how quiet the room is while attendees use sign. The Deaf culture is something its participants are proud of, a culture with a shared ASL language and communication style that goes back many years.

Now observe a local meeting of a hearing loss support group. The keynote speaker communicates with both sign language and orally. A man sitting in the back relies on an ASL translator to understand the speaker. A row of people read real-time captions from an overhead screen as a person types what the speaker is saying. Two women sitting up front watch the speaker’s lips attentively to catch each word spoken. All of these people, except the sign interpreter and typist, are hard of hearing. Yet they all have different ways of communicating and understanding one another.

Without a shared communication style, can individuals with hearing loss really have their own sense of community or culture? Readers of this blog recently shared their opinions…

“I have total hearing loss in both ears. But because I was adult deafened and am oral and do not use sign language, I am not considered culturally Deaf, rather hard of hearing. Yet I am “deafer” than 95 percent of the students at the local state school for the deaf who have some residual hearing. I am in between cultures. I cannot participate in the hearing community, nor the Deaf community.” – Sherry Mason, Missouri

“My husband has hearing loss, and it is very difficult to hear in restaurants and other public places. I think people who don’t deal with hearing challenges are unaware of the obstacles they create. Is that cultural?” – Amy Hemingway Smith, Texas

“How about coming up with a definition of ‘culture?’ And with some parameters for what you mean by ‘hard of hearing’ people? Do you mean only people with partial hearing loss who use speech (and maybe speechreading) to communicate? I’ve been assuming you are distinguishing between Deaf people (who use sign language) and hard of hearing people who don’t, but not everyone will realize that. Also, I still think that only people who socialize with several oral hard of hearing people at the same time can really answer the question. People who have never done so aren’t in a position to know themselves whether or not there is a HOH culture–they won’t have seen it in action.” -Dana Mulvany, Washington, D.C. (has hearing loss)

The last comment raises a good question. How can a hard of hearing (HOH) culture be defined?

• A shared communication style. They prefer to speak orally, instead of only using sign language. Lip reading (also known as speechreading) is also a common way to understand one another.
• A strong reliance on technology. Hearing aids and assistive listening devices are available to help the HOH population understand speech and hear important sounds.
• A strong reliance on closed captioning. Captions assist with understanding television, movies, and (when available) live presentations. This could also fall under the technology category.
• Emotional connection. This would include not always feeling connected with the hearing world because of difficulty understanding speech. For those not comfortable with sign language, they may not feel part of the Deaf culture. Emotionally, individuals with hearing loss might feel somewhat isolated from the hearing and/or Deaf “worlds.”

Author Bio:

Shanna Groves is the author of Lip Reader (June 2009 release), a novel about an Oklahoma family’s hearing loss experiences during the early-1980s. Read the Lip Reader Blog at http://shannagroves.blogspot.com.

I also love the mountains where the soaring height gives me the sensation of a closeness to the face of God through time and space, which is more awesome than at the usual level of earthiness. But the mountains are too silent for me. Their quietness falls silent on my non-hearing ears. I do not hear their voices.

But the sea — well, that is a facet of nature that is unexplainable in normal terms. Through my hearing loss, I gained a special fondness for the sea. Nothing is more awesome than a thunder storm over the waters. Each strike of lightening is like the handwriting of God. Each thunder clap is like His powerful voice, as they remind me of His majesty and my smallness on this speck of dust called Earth. It is at the seaside that I hear best. I like the sea because of its noise. The sea is noise that I can hear. I cannot hear all noise, but I can hear the sea. I hear its thunderous roar. I hear its quietness. I hear its silence. I hear its gentle lapping at the shore. The sea speaks wonderfully to me in silence and in sound.

The sea opens my closed ears to the wonders of the years of quietness that have caused me to forget. At sea-side, I can allow myself to become engulfed in the magnitude of God’s greatness, yes, even His love at a more human, understandable level. At that nexus and plexus where the incoming Atlantic waves have dwindled and eternally kiss the sandy beach, I walk along this meeting place of solitude with the waters playing tag with my toes. I listen to its silence. I listen to its sounds. This is my wonderful, wonderful. My wonderful silence. My wonderful sounds.

by Virginia M.

SWC has several lists (with a maximum of 99 people on a list) that share feelings, frustrations and humor without having to explain and repeat ourselves.

If you were recently diagnosed with hearing loss and feel confused about hearing aids, we have many experienced hearing aid users who’ve been there and done that. We can tell you how to be a smart consumer and not just settle for just any price given to you. How to pick a good audiologist, how to get the best deal on hearing aids, what assistive technology can do for you in the workplace and how to survive the holidays and so much more that affects us daily.

If you’re considering having a Cochlear Implant or just want to learn more about implants, we have a special list for C.I. users.

If you’re just beginning to investigate whether the C.I is for you or want to learn more about implants, than we have a great group of people to tell you their personal stories. People who have been through the process and started out exactly where u are right now. People who have questions and answers about the differences in manufacturers of the Implants. Most of all, if you decide to go through with having the implant, everyone on the list is ready and willing to go through it with you and high five you when you hear your first words.

We’re happy to announce that we will soon be starting a special list group for people with Meneire’s and vertigo problems.  So keep coming back to our weblog or website to check for the announcement of the start of this wonderful and much needed group.

If you’re interested in learning more about SWC please visit us at: www.saywhatclub.com and search through our website. Feel free to email and ask questions concerning joining a great group of people who can relate to where you are, where you’re going and what’s in store for you.   Each list group has its own personality so that our hospitality committee can make the right fit for your specific needs.

Hearing loss doesn’t have to mean the end of your social life, your work life or your communicating with people. SWC is here to give you the tools, the support and resources to get through it and not allow yourself to be alienated from an active life.

Our lists are made up of everyday people. Come see for yourself and allow us to give you what we’ve been given…. friendships, support, opportunities and much more.

“What do you think made you start drinking?”

Laundry List:
- Pending divorce and expected result: bankruptcy
- Looming debts rivaling the national budget
- Loss of driving ability from sporadic bouts of vertigo (fear factor)
- Tinnitus
- Hearing loss

“What – wait, you have hearing loss?”

I read your lips and guess much of the rest.

- Loneliness (LL continued)
- Endless battles for accommodation

“Any major issues in your childhood that might be involved?”

And so it goes. The above is an excerpt from one of many interviews I had in the behavioral health facility where I recently spent 4 days (inpatient) for alcohol detox.

Great facility, great program (I detoxed successfully, and will get outpatient aftercare).

Of interesting note; it turned out to be much easier communicating with my “peers” (other patients in the facility for a variety of reasons) than with most of the staff.

All the patients wear wrist bands of various color – it’s a bona-fide hospital – some wore more than one (I had 3 – red, yellow, green – I liked to call myself a traffic light).

My green band meant that I voluntarily requested a bed in the facility (meaning I could choose to leave any time I wished – not true for everyone). The red band meant that I have allergies to certain medications – to remind staff to look at my chart before administering anything to me.

The yellow band I had to request on my own from a day nurse, even though I’d mentioned this issue at my intake interview – it meant “fall risk” (vertigo).

Now I’m not one to jump off a horse (particularly one I picked out and saddled up myself) in mid-stream, so I wasn’t going to leave the place until I’d fully detoxed and my doctor agreed with my assessment.

When that finally did happen, and I got to speak to my case manager (CM) prior to going home, I had a few questions…

My first question was regarding the “missing” color band (not the yellow – but some color I never received because it doesn’t exist). It was, of course, the “Deaf/deaf/HOH” band. Or perhaps even a generic “different ability” band. Something that would at least flag the staff that they’d need to provide some extra accommodation for my situation.

I’d wear my “Please Face Me” pin, but pins are (understandably) contraband in a mental health facility.

My CM told me to be sure to write that on the evaluation form (which I’ve not seen a trace of yet).

My next “question” (really a statement) gave my CM a bit of that “deer in the headlights” look.

“In my aftercare program (group therapy sessions), I’m going to need CART.”

The CM needed the acronym deciphered, of course. Being the helpful guy I am, I did so, and also let her know that I could hook (whoever) up with some folks I know who can provide excellent remote CART – and all you need is an Internet enabled PC, a microphone, and Skype.

Those deer were becoming hood ornaments at an amazing rate.

“Well, there is a PC in the room where we do the sessions.”

Good, as long as it’s got Internet; and the folks I can hook you up with can tell you everything else you need to get/do.

[head nod affirmative]

And by the way, it’s required by law that you accommodate me.

The deer were frolicking in the roadway; the venison business booming.

I let it go at that, and moved on to more mundane questions about my ongoing meds, the schedule for aftercare, etc.  The road crews cleaned up the mess, and traffic flowed cheerfully along now.

Although I’m pretty sure most readers won’t identify with my original goal, nor my choice of “hotels”, I’ll bet many of you have similar stories to tell about your interactions with the medical community in general.

Let’s face it – there are probably more than a few AUDIOLOGISTS who don’t know what CART is (or at least won’t mention it if they do). I’m learning (with the help of my SWC friends) that if there’s a battle to fight, than fight I’d better. Particularly when it comes to my (OK, mental) health.

In part two of this post, I’ll let you know how the aftercare accommodation turned out.

Cheers and best wishes for your own battles.

Paul S