This new groundbreaking adventure is to encourage the free exchange of ideas and knowledge within the community. As humans, we are inherently controversial for our background, experiences, and education are as diverse as the color of our hair. This is your forum for publishing your opinion pieces, comments and helpful suggestions to not only the staff and SWC members, but to the general population.
In keeping with the mission of SWC, please, in some roundabout way, reference various issues or concerns for the hearing impaired population. Perhaps this can be one piece of that bridge created with our voices for the hearing world. We welcome, encourage, and beg for your replies concerning previously published articles.
If you have a comment regarding a particular piece found within our Newsletter, simply click on the editor link at the bottom of the page.
**Please note- the editorial staff reserves the right to choose pieces as fitting per publication, and timing.**All views posted do not necessarily reflect the view of the SayWhatClub- but rather that of the author. All opinions expressed herein, are explicitly those of the individual author. The opinions do not substitute advice from your medical doctor.
Responses to the Viewpoints and Opinions can be sent to newsletter@saywhatclub.com and they'll be put on a page within two weeks.As winter gets underway, news flashes of "the flu" abound reminding us of our mere mortal state. Keeping healthy, and getting the most out of our life, ears, or 'ear' appliances is always of utmost concern as our loss becomes greater or more disruptive to our lives, and as technology advances.
The hustle and bustle of the holiday season with the subsequent rounds of cheerful parties are often great reminders to the deaf or HOH standing at the sidelines-- taking care of your ears, hearing, appliances and communication needs never cease. Now is the time to become proactive in your relationships and healthcare. We are more than our just ears so let's hear from you now!
Barbara Bavido
SWC Editor
Editorial comments can be submitted to:
Barb Bavido
CaptivatingProse@cfl.rr.com
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Curtis, also author of our hearing aids and such articles shares this article about hearing aids and the dispensers of them:
"The modern digital hearing instrument is the most advanced and Sophisticated device ever invented for the facilitation of human communication for those with hearing problems. However, these devices are not intuitively self-explanatory. The learning curve for practitioners in fact is quite steep.
It is NOT practice that makes perfect;
It is Perfect Practice that Makes Perfect.
Until the hearing care field starts striving and moving closer to this vision of perfection, we will be stuck knowing Less and less about more and more." (Mcspaden, 2003)
Curtis:Wasn't that refreshing to read? Finally, someone is saying what we all suspect.
Only when dispensers begin to practice the "perfect practice", will we know if modern digital technology can really help us hear better then analog technology.
There is no question that digital technology provides a better overall sound, BUT we still don't know if it helps us hear well. Until that is proven, we will be buying the most expensive "1985 fitting technology money can buy."
Further, we won't know if it helps, until the dispensers start doing proper programming. Finally, how will we ever know if they are really doing the learning curve for Perfect Practice?
I suspect most audiologists are too busy trying to get people to walk in the door than to find time to actually stick some aids in their own ears and start programming.
Also reported by Mcspaden, is that time after time he sees patients with a "Standard" audiogram and a targeted "Best Fit" which does not live up to the "Best Fit" billing for that particular individual's hearing loss.
No kidding?! Isn't this the same idea as the WIDEX sensogram? It's for lazy people. Or people afraid to try.
Further into the article the author states,
"We might even make the 'leap' to understand that you do not hear with your ears, you 'hear' with your brain. Therefore we need to understand how the brain decodes acoustic signals during the process of what is generically called hearing."
Curtis: Now that is as refreshing to read as the first paragraph! He also laughs at some of the beliefs dispensers believe to be true, that are completely out-of-line with digital technology. This is a man who has it right! HOH consumers need him on board to testify on our behalf before the Congressional Health Care Committee.
The author is Jay P. Mcspaden, a name I read about often. The full
article is titled: "Understanding Less and Less About More and More" By Jay B. McSpaden, PhD. It can be found in The Hearing Review, Vol 10 September 2003. Internet Link:
http://hearingreview.com/Articles.ASP?articleid=H0309F03
Is there a way we can get him on our side?
Regards,
Curtis
Barb's Note: Maybe if enough of us write to him we can? Thanks for the informative article, link and connection to someone, "in the know." We are stronger together, than alone.
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Karen Sadler, a dedicated SWC Member, having completed 4 years of medical school, and endured an implant that was later removed offers these words of caution to fellow members. She is not a medical doctor and does not prescribe/endorse treatment for medical problems. Use the information here to help you make informed decisions, not as a substitute for any treatment that your doctor may prescribe.
"Jingle Bells, Bob E smells,
I can't hear the sleigh,
Oh what fun it is to sigh,
and run to get out of the way..."
Oops! Sorry Karen, wrong quote! Let's try this again:
If you have a cochlear implant, may I please remind you to get both a
pneumonia shot and a bacterial meningitis shot? The meningitis shots can be gotten at your local public health facility. They run about $60, and will not be covered by your insurance unless you can claim other health factors besides the CI for the need of this shot such as autoimmune problems. More information regarding the FDA study of cochlear implants and meningitis can be found at:
http://www.fda.gov/cdrh/safety/cochlear.html.
One case that stands out is that of an older man that had his CI for six years and still got meningitis from it and died. The information we now have indicates that the electrode is so close to the brain, and if a tear occurs in the cochlea from rubella (which thins the membrane), age, or Mondini's syndrome...then the metal in the electrode acts as a conduit for bacteria to reach the three membranes covering the brain. Remember, meningitis is an inflammation of those three coverings.
If you are considering a cochlear implant, please make sure you get these two shots prior to the implantation. It takes about six weeks for full coverage/immunity to work. If you have children, they should already have the pneumonia (HIB) vaccine. You DO need to get them the meningitis vaccine.
Please, do not let anyone tell you this is not a critical issue. A dose of preventative action, is well worth the time.
Additionally, if you have a child who is most probably deaf through possible introduction to rubella or the cytomegalovirus, or if they have Mondini's syndrome, I would beg you to please carefully research all current documentation concerning a cochlear implantation. It is my opinion after researching this, that the chances of death from meningitis are especially high in these groups with shortened cochleas.
I tend to watch the Center of Disease Control and their analysis for influenza for the year. The flu viruses tend to change protein coats on a yearly basis, and that makes it hard for the CDC to determine which viruses will hit the U.S. This year, Australia and Chile were badly hit by the flu with millions sick and many deaths. The CDC can only determine three types of flu's that the companies make a vaccine for, and they have to make an educated guess based on the outcome of watching other countries for eight months.
The FDA has just this year changed its mind and now recommends that children under age 1 get the flu shot. I know it is a lot of shots on top of the other one, but influenza can be a killer. I would recommend anyone on the SWC who is over 50, has any type of autoimmune problem (lupus, MS, rheumatoid arthritis, etc.), or who has a child under age 1 to get the flu shot. I would also recommend that teachers of which we have a few, get a flu shot due to close contact with children.
As always practice good hygiene. Wash your hands at every opportunity. All of us are on keyboards a lot and they are major carriers of cold and flu viruses. So are phones and doorknobs.
Barb's Note: Thanks for sharing your wisdom and knowledge with us,
Karen. It is an irony that as you wrote this note, you had flu of some
sort, and as I, Barb edit this, have myself and 3 kids sick with the flu. It IS a small world? Thanks for keeping us up to date. Anyone that would like to reach Karen can do so at:
Karen L. Sadler
Science Education
University of Pittsburgh
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Many of us have undergone surgery, sans our hearing implements, and incommunicado- Nancy Perron, a fellow SWC member shares the following personal experience.
Recently, I had back surgery for spinal stenosis. Everyone involved with the surgery knew I had a cochlear implant.
On the day of admission, I was able to take my implant with me in surgery (after having my name label stuck on the back of it) so I could hear whatever it was I needed to do before "going under" in the operating room and again when I was in recovery. I could understand what was said even with all the surgical masks on prior to surgery and again in recovery when the nurses would ask me questions to check my vital signs.
I believe that those who desire to take their hearing equipment with them in surgery and afterwards should let the team working with them know their desire. It helped me tremendously to understand what they wanted me to do and in turn what they were going to do as well.
Barb's Note: A wonderful example of self-advocacy. Thanks for sharing your positive experience.