This being said, I have decided to be more honest with myself and with people I don’t know re: my hearing impairment.  I’ve decided that it is perfectly OK to tell the cashier, the waitress or whomever I’m speaking to that I have a hearing impairment, and could they please talk slower and speak up for me?  I have tried this new-found approach just this week.  I met a girlfriend for lunch, and I arrived first.  I went up to the hostess and requested a table that was not located in the center of the restaurant (booths work well for me as far as blocking out noise in restaurants).  I said “I have a hearing impairment, and it is better for me to sit at a table or a booth that is not in the open, but against a wall.”  The hostess then took me to the quietest area of the restaurant and sat me in a corner booth (perfect!) as I waited for my friend.   When I went to the grocery store later that day, the cashier asked me a question.  I asked her to repeat it, but still no comprehension on my part.  I then just said to her “I have a hearing impairment, and it’s very hard for me to understand what you are saying.”  She then talked a little louder and slower and just asked “Coupons?”  I got it that time!  In my experience, I’ve also discovered that when you are honest with people and tell them why they need to repeat what they said or word it differently for you, they are more than accommodating in the request.   I am learning to give people more credit than I did in the past, which has allowed me a more positive view of the world.

Personally, I find it insulting. A tax credit of $500? When was the last time any of these Senators purchased a hearing aid? Do they have any idea of the cost? Shame on the  U.S. Senators for not bringing forth a better piece of legislation that affects 36 million Americans.

If you believe that we should get a better piece of legislation than  S. 905, than write your State Senators NOW.

http://www.senate.gov/general/contact_information/senators_cfm.cfm

Image by Joshua Lawton

What this means for people like you and me is that we no longer have to miss a movie and wait for it to be released on DVD.  It also means, the movie will be available to us at any of its showings, not just the matinee at 1:00 p.m on a Wednesday afternoon.

To those of us who are hearing impaired and late deafened, ALDA has been here for us. Even though they are an all volunteer organization, they hope to one day be a major organization with a  national office representing all of us. All I can say is that ALDA has made our dream come true and taken up the battles to fight that we could not have proceeded ahead without them. And who knows, maybe, just maybe, this is the organization that will help win the battle of the unaffordable hearing aid.

Join me in congratulating ALDA and all the people who helped make theatre captioning a reality.

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

Are your hearing aids on?

    Don’t you just hate when someone says to you “are your aids on today? are you sure they’re working?

Here’s a list of things I’ve observed, whether in myself or others:

-being at a party with lots of noise and music and unable to hear a one on one conversation

-seeing another hearing impaired person sitting alone in a corner with a drink in their hand, avoiding people.

-recognizing when one yesses you to death

-asking for repeats/rephrasing but still not getting it because the noise is so loud

-afraid to start a conversation with someone

-being a comedian and using disabilities as your main joke lines

-listening to someone tell a Helen Keller joke knowing u are hearing impaired and wanting to spill your drink on them.

Have anything else to add? or do you have anything you do to make it easier for yourself during the holidays?  Let us know what you do.

It’s sort of humorous that I’ve known since I’m 19 years old, that I have Otosclerosis and that its a progressive disease.  However, when the Doctor at that time told me I would be deaf by the time I was 30 and did not go deaf, I ruled that the Doctor had no idea what I truly had.  And so, years have gone by and only recently, have I noticed my tinnitus had become incredibly loud  along with dizzy spells. 

The current Doctor explained that my audiogram looked as if I had Otosclerosis and that I would need to have a cat scan on my good ear.  He was concerned that the Otosclerosis may be spreading, possibly causing me to lose hearing and feel dizzy.  Though I had a hearing evaluation 8 months ago, he asked that I get a more recent one done.

Well, yesterday I did just that and the results were that my hearing went from mild to severe to moderate and profound.  Shock and disbelief almost gave way to denial, but being in the field of working with deaf and hearing impaired, I knew I had to deal with this and be as realistic and prepared as possible.  I was now very close to the severe range in my low frequencies when I was once on the upper mild range.

In two weeks I’ll have a cat scan and hopefully some news as to how much bone deterioration there is and if I am too lose more hearing, what time frame am I looking at.

What are my fears?  Well, first off, that I’ll never hear music again, that I’ll never hear my friends voices and worse, I won’t hear myself or my breathing.  I’m not running scared but I need to know what I’m dealing with or what I will be dealt.  The fear of being alienated and islolated from people is very real and though my girlfriends quickly responded with, “we’ll learn sign language,”  I know that girls night out won’t be the same.

For now, I want to feel that I have choices, that my options to wear a hearing aid successfully will be realistic and that control of my own life won’t be lost to dependence.

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.

The SayWhatClub is a strong support group for late deafened and adults with hearing loss.  We believe strongly in helping one another through our support groups and through Education.  The University of Washington needs everyones help, especially parents who have children with hearing loss or deafness.   You can learn more about the study here https://depts.washington.edu/projhql/  The University also has a facebook page about the study.  http://www.facebook.com/pages/Quality-of-Life-of-Children-and-Youth-who-are-Deaf-or-Hard-of-Hearing/121377458983