HeadLines

 

Kirklin Clinic Head & Neck Cancer Support,  Birmingham, AL

Distributed by American Cancer Society
Pat Sanders, Editor
Third Quarter, 2009

 

New Product to Watch                                      

In the morning paper recently, a product so new you can barely find it on Google, a design firm here in the Birmingham area has created a tool for the speech impaired that will be used on Apple's iPhone. Designed for speech impaired children, it will be wonderful for laryngectomees who can't speak because it speaks for you with a base of words that lets you rapidly form a sentence....or order from McDonalds or Starbucks. It uses the GPS to even offer you that menu as you walk in the store. Words like "Cool" and "Dude", are already programmed. I haven’t seen the part yet that lets you write new words but I do have the beta version on my iPhone.
This is being released, likely this month, July, as a free app for the iPhone.
From the B'ham News article:
"Locabulary" grew out of discussions the team at PUSH Product Design had with Drew Davis, a pediatric rehabilitation physician who is an assistant professor at UAB. Davis and another doctor treat about 4,000 patients in their practice, specializing in children and teens who have physical or cognitive disabilities, such as muscular dystrophy, cystic fibrosis or traumatic brain injuries.

Davis was interested in PUSH's work in design, believing the firm could make affordable technology for the disabled. PUSH, a firm of Auburn-educated engineers and designers, has designed everything from spinal implants to video gaming equipment.”
“The result was Locabulary, an application, or software tool for Apple's iPhone. Locabulary allows an iPhone user to manipulate the phone's touch screen to call up a menu of words and phrases, with the phone speaking the words. The application is designed so that users can assemble sentences using a minimum number of finger taps and also provides an option for sending completed sentences as text messages. The program was funded by a grant of about $24,000 from the Alabama Council for Developmental Disabilities, a division of the state's Department of Mental Health.”
I remember the days with no voice and the struggle to write the questions or tell them what was happening. Now, if you have an iPhone, you will be able to answer with a touch screen to the extent of what is programmed into the app. This is the start of something exciting for us. I has been for me, already.
You see, I wrote to them to tell them I was excited about what they are doing, and to talk about laryngectomees and WebWhispers. I made a couple of suggestions….. and they liked them. The very next day, they invited me to become an iPhone developer and to join the team. I am enjoying using my knowledge and experience with laryngectomees to make suggestions for methods of making menus work together or separately, and suggesting, for the future, things like a menu to be used to talk with your health professional. They tell me they like my ideas and I certainly like theirs.
The app that will be released first will get a lot of feedback and they are leaving plenty of room for growth of vocabulary on Locabulary.

Pat Sanders

 

Ignorance or Discrimination?

 


You walk in on an argument, a petite woman, say a size two, is having an argument with a rather large woman, say a size twenty. Which one do you defend?

If you answered this question based only on this information, you are guilty of ignorance or discrimination! Eye opening, isn't it? Sometimes our opinions say more about us than we want to share with the world. I write so much stuff that gets deleted because I just don't think it is always fit to share the first time around. This is my fourth shot at this one. I try not to make Pat a crazy woman; sometimes I succeed.

Last month one of our members related a story of, in my book, mistreatment fueled by ignorance, not discrimination. He did not express any emotion but rather disappointment. An awesome trait in a writer. Many of us have lost jobs because we could not separate our personal opinions when writing. This person was just great. But... the comments from this group were educational to say the least. Oh, we are an opinionated group, both good and perhaps not so good. You decide.

In the seventeen years I have been on this adventure I have met some of the strongest, bravest people I could ever imagine or hope to meet. I have also met some that helped me understand completely the expression, "dumber than a box of rocks." But not very many and not necessarily the ones fighting for their lives.

We are so fortunate that the pros we have are worth their weight in gold. They ask, listen, and make sense of our answers, feeding it back to us so we can understand the full impact and move forward to the best of our abilities. They rock!

From time to time we come up against a professional who tells you they know everything only to ask moments later peering at your stoma, "And when are they going to close that thing up?" Depending on my mood, they can be entertaining. I am absolutely positive that "entertaining" is NOT the word they use for me.

The fact is we have a misplaced understanding of how we are to connect all of our dots. It is perfectly acceptable for us to teach professionals how to take care of us to better help other patients. And yet we are completely offended by someone who has never seen anyone like us and who does not respond to our satisfaction. Which way do we want it?

I believe the restaurant manager that denied service to a laryngectomee is an uncaring toad. The idea is, kissed with a small amount of education, he could be a prince.

I never met a laryngectomee until 20 days before my surgery. I had never even heard the word. So why do I want to react to how someone treats me? Ask yourself, how do "you" treat someone with a disability? Are you understanding and forgiving or do you look the other way?

We want to be treated like everybody else, "normal", until someone misses one of our shortcomings. I watched a very nice lady go ballistic because she got her food before she got her soda in a restaurant. After all, she could not eat without liquid. And the waiter should know this? For what reason? She called ahead? Yet some would call him uncaring. I think she parked her broom in the wrong spot.

I am not saying that we should not act when something happens to us. I am saying that we do not have the right to place all of our anger on the weakest link in our progression. We are often given the opportunity to open someone's window of understanding. I would love to say that I don't do this by throwing a rock through it, but I have been known to do that once or twice.

When someone approaches you with a new concept, caught off guard and in a rush, how many of us are at our best? I think people with small children understand this better than most. I was not a mother. And I will not say I have not crawled down someone's throat and kicked their kidney over their actions. I do try to choose my battles wisely. Wise is a very open-ended term.

I doubt that anyone on this WebWhispers list would want to say they were uncaring or unfeeling, yet our reactions and our words sometimes put us in the same position that got our knickers in a knot in the first place. Is it better to tread lightly and educate or to stomp the knowledge into place. Our reactions must be without question in our own minds beause we ARE the type of people no one soon forgets. We are footprints that remain in peoples lives.

Debi Austin, 1992
"you have not converted a man simply because you have silenced him..."

 

WebWhispers – Who are we?


By Ed Chapman <ebchapman@clearwire.net>

What do we do, how can we help you, how are we changing, why are we needed, who are we really? I will write something on this subject each issue.

We can all go the WebWhispers Internet site and learn that we were started in 1996 by a special person named "Dutch" Helms. With his and many other’s caring guidance we have evolved into the largest Internet site for individual laryngectomees in the world. We are "creating understanding, providing educational opportunities and rehabilitation assistance" with our primary purpose being "to provide practical and educational information and support by way of the Internet" for those involved with or who are laryngectomees.”

You can also look up the people that are involved with keeping this site going. You may wonder, "What makes them so special that they can operate a site as big and imposing as this?" Basic answer is, they volunteered. but we will start the real answers in the next issue by giving a brief bio of each person. With our volunteers being made up of caregivers, medical professionals, and, most important, laryngectomees, we are able to cover nearly all aspects of having throat or larynx cancer and the results thereof.

How are we affiliated with the IAL (International Association of Laryngectomees) or how do we fit with the local clubs. We will explain as we progress.

Another question that comes up is how we can help a Medical Doctor, Speech Language Pathologist, Nurse or CareGiver. Well, just think what an advantage you have if you are able to find out how it feels to be a patient or hear from other professionals that are running into the same problems you are facing. Probably the most important is the support you can get if you are in an area that doesn't have any known support groups or you don't know where to look.

I’ll try to let you know what we have available within our site and how we can help you. We ask you to help us with an email about things that you may want us to cover on the site or in this newsletter.

Ed


ADDING TO KNOWLEDGE

THE RIGHT PART OF THE INTERNET

 

We have people who receive HeadLines by snail mail, others who receive it in the emails sent out by the WebWhispers email list, more who see these articles copied in their local club newsletter and, since HeadLines has it's own little corner of the WebWhispers.org website, some go there to read it, or look up an article that pops up on the WW search engine or even on Google.

If we are able to teach you something, make you think a little bit about life, love, learning and laryngectomees, then we accomplish our purpose.

Lately, I have been reading, hearing, seeing, discussions about the computer society and our socialization on the Internet.

Articles from people, who have no idea what it is like to lose the ability to communicate, will smugly discuss how we keep people (not just children) away from the evil places, mean people, or nasty subjects that are found on the Internet and there are all kinds of programs to filter or block those things. I know you can tell your kids, don't go there, and they will anyway if they can figure a way, and they likely can. You have to watch them and what they do but tell a kid to wait and don't touch the uncut cake on the table till you get back, leaves a finger making a cave in the side of the frosting before the door swings shut behind you.

Living in fear of the shadows that exist everywhere is a way to miss a lot of the good. The Internet is here to stay and it is particularly effective in the health related web sites.

A new addition to the library at WebWhispers is a section just starting

http://webwhispers.org/library/SecondPrimaries.asp


Those of us with Larynx Cancer seem more likely to get second primary cancers of the type that could be caused by the same things that caused our larynx cancer. Lung cancer and Esophageal cancer are two extremely likely ones in addition to other head and neck cancers. We are providing sites where you may find more information:

LUNG CANCER


Notice
Possible Benefit From Online Genetic Testing For Lung Cancer 6/30/09
http://www.sciencedaily.com/releases/2009/06/090630132003.htm

National Cancer Institute
http://www.cancer.gov/cancertopics/types/lung
MedlinePlus
http://www.nlm.nih.gov/medlineplus/lungcancer.html
American Lung Association
http://www.lungusa.org/
American Cancer Society Forum for Lung Cancer Survivors
http://csn.cancer.org/forum/129
CancerCare
http://www.lungcancer.org/

HeadLines Newsletter:
B’ham:  Pat Sanders,   205-980-8416; pat@choralmusic.com
                                                                                                                                                        
 


For cancer information call 800.ACS.2345 or visit our Web site at www.cancer.org
American Cancer Society in Birmingham:   Nancy.Price@cancer.org