- Facts and Figures
- Acronyms and Definitions
- What is Larynx Cancer (Links)
- Free for the Asking
- SLP Information
free for the asking
Look carefully through the various offers listed below to have fun and find what you might need.
Lary education and video
NEW - THIS VIDEO NOW ONLINE
It is almost a half hour long...well worth watching. (It says 53 minutes but it has a glitch that repeats it)
The video, “Laryngectomees Loving Life” was previewed at the IAL Annual Meeting to great reviews. A copy can be requested by calling the IAL Office at 866.425.3678 or by emailing IALED@theial.com. A $5.00 donation per DVD, to help defray the cost of sending these to individuals, in order to ensure this project will be able to continue to others, is not mandatory, but greatly appreciated.
2013 IAL Conference EMT Training
During the IAL conference in Spokane, WA in 2013, a new training program was created. It was to help Emergency Medical personal understand the concerns and needs of a laryngectomee in emergency situations. The program has become a part of the IAL conferences across the country. The following 3 videos have been put on YouTube by the Spokane Fire and Rescue, from that training session. The intent is to share them with anyone, to increase awareness in emergency situations. You can download them from YouTube and put them on a CD to share with your local Fire Departments or medical personal that may not have experience with laryngectomees.
Ed Chapman of Richland, WA was also very instrumental in creating this program. He also has the operating procedures, algorithms and reference material that Spokane County adopted for their medical/first responder personnel. He can be contacted through his email in the members list.
The first video, Laryngeal Anatomy, is presented by Brian Mitchell, DO Spokane Ear Nose and Throat. This highlights the understanding of anatomy of a laryngectomee.
The second video, Laryngeal Communication Methods, presented by Brian Shute, Ph.D., CCC-SLP. This highlights the limitation of a laryngectomy for communication in an emergency situation.
The Third video, Laryngectomies in Distress, is presented by Susan Bruemmer, M.S., CCC-SLP and Tamara Drapeau, Paramedic-FTO. This video helps to understand other concerns and problems a laryngectomee may face in an emergency situation.
Videos Featuring Laryngectomees
Youtube has exploded with videos on every subject and they are free. Here is a selection of ones we thought you might find interesting along with others from our own site.
Frank Klett, NJ - 2008 is watching for good items for this area or your suggestion may be sent to Library@webwhispers.org
MY STORY - Ellen Frohardt
Our WW member (2009) Ellen Frohardt just decided to tell her story at a story-telling event in Colorado Springs a few months ago and found this to be incredibly transformative. It is worth your time for every second of the 21 minutes she is talking. Please go to youtube to see it:
BASIC EDUCATION - LARYNGECTOMY
This is a 22 minute video and is an excellent educational discussion of what the pre/post laryngectomy patient can expect before, during and after surgery.
Patients and physicians at The University of Kansas Department of Otolaryngology discuss expectations and experiences for patients and families planning for a total laryngectomy.
Published on Mar 26, 2012 by KUMedCenter. FK
After your Laryngectomee
Another YouTube video to help the laryngectomee after surgery was created by the Spokane and Richland, WA laryngectomee group. It talks about what to expect following surgery and how you can adapt to being a laryngectomee. It is an informative video that gives support to the new laryngectomee.
"HOW TO" - self-help videos usually made by the laryngectomee
1. Steve Staton using the Blom-Singer prosthesis
Gel Cap installation, PART ONE
Gel Cap installation, PART TWO
2. How to install hands free valve holder by Steve Staton (8 min)
3. Self Help for the Laryngectomee (The Blue Book)
Written by Edmund Lauder, Edited by Jim Lauder,
PDF copy of book donated by Lauder Enterprises
1. Someone posted this on the forum and it's a good idea...A one minute instructional video produced along with the San Antonio PD. What to do as a a Lary during a traffic stop. FK
2. Do you have a video for this space?
1. Laringectomizado total tocando sax
Beautiful. He plays so well.
1. Tor Wold is the laryngectomee singer from Trondheim, Norway.- From the CD
"Aldri Åpenbart" (2010) Tor Wolds Blue Bombers. www.torwold.no (not in English)
2. Our WebWhispers member Tommy Cook, "The Singing Cowboy"
3. Tony Talmich is a professional drummer and WebWhispers member. He has created a video of himself singing with a TruTone electrolarynx. This is a great example to show that you can do amazing things. Great Job Tony.
4. Tony Talmich singing Old Time Rock and Rollwith his TruTone EL. Wow
5. Brazilian Singers - Laryngectomee Choir in video on YouTube:
“O Coral Inesperado - A.C.Camargo Cancer Center” — English version:
http://www.youtube.com/watch?v=q61HQoA6v9g Um coral formado
6. Harry Glasson, his guitar and his voice...The City Girl
SPEECH - AL
1. Short demo of a 22 year Servox user, Donna Kehm, trying a TruTone for the first time. FK
2. TruTone™ Artificial Speech Aid for a Laryngectome - Example of a laryngectomee using the TruTone Electrolarynx. Tony Talmich, Griffin Laboratories
3. Be sure to check out the videos on our WW site, including the SERVOX GURU:
4. Send us the URL for your video. Send a note to Library Staff
SPEECH - ES
1. The following is a link to the audio that was created by Edmund Lauder and is available on YouTube. Edmund was a laryngectomee, a speech pathologist, and the author publisher of the book "Self Help for the Laryngectomee". This tape was produced to help laryngectomees produce esophageal speech. It is a vocal extension of his book, which is available from Jim Lauder’s business, Lauder Enterprises. Information on Lauder Enterprises is located in our Supplier’s section. This information and more can be found in the Talking Again / Esophageal Speech section of this web site.
2. We would like to have videos of ES speakers to place here. Send a note to Library Staff
SPEECH - TEP
Life as a laryngectomee - A seven minute interview with Bobby Noe of Arlington, TX who speaks with a TEP. Video furnished by ATOS Medical
1. In our Library, we have a section on swimming for larys, which contains several videos. PS
2. Laryngectomy Swimming Demo (made at San Mateo IAL in 2009) PS
3. Sent in by Bulent Batir
4. Sent in by sandrogeo gianferrari
Received this message (edited) Sandrogeo 2/2013 (Gorduno, Switzerland)
[hello pat several people have written to me to know where you can buy the appliance for swimming. I explained why it is not possible to give any address in compliance with U.S. law.
Unfortunately, water "device" equipment are not allowed in the United States. The authorities too afraid that an accident "could" happened and "lawsits would follow". This risk is too great, so there is no way for us to distribute the SERVO AQUA legally in States]
GROUPS - Variety
1. Excellent Hints for Speaking with Demonstration - A video from the UK, about communication, specifically after total laryngectomy (surgical removal of the larynx). This video also highlights good communication skills and can be used in training for anyone working with the public. Produced by the South East Coast Laryngectomy groups: YakityYak in Brighton and Necks Best in Eastbourne / Hastings. FK
A few of the "Life as a Laryngectomee" series by Atos
Life as a laryngectomee - Mr Howard Defibaugh
Life as a laryngectomee - Mr John Aguilar
Slide Shows of group activities with WW
Slide Shows of WW Cruises
A great way to make a lot of new friends and learn a lot is on the WebWhispers cruises. I encourage you to go to the cruise page for links to more slide shows. The cruises are always a wonderful time.
WW IAL and Annual Dinner Activities
The IAL meetings and dinners are a great way to meet other Laryngectomies, Medical professionals, and Vendors. You make a lot of new friends and will learn more that you ever thought possible. Here is a link to a slide show from the 2014 IAL conference and dinner.
SOME STATES FURNISH A FREE ELECTROLARYNX
The rules are different in each state - you can check the programs of which we are aware on Talking Again - Electrolarynx.
Free vendor catalogs are available via the toll-free telephone numbers, Email addresses, and websites listed on our Supplier page. Many of these catalogs contain educational information, photos and descriptions of equipment used by laryngectomees. If you write an e-mail, be sure to include your name and mailing address.
If you hear of a laryngectomee or caregiver who is unable to make the phone calls, write the e-mails, or navigate to the website; you might have a local person (including yourself) make those contacts for them. It will not cost you, them, or anyone other than the vendors anything. The vendors are more than happy to send the materials.
tapes - signs - brochures
TAPES FROM INHEALTH
Patient Demo by Richard Crum
This video is oriented for a patient audience. The purpose is to demonstrate putting in/taking out a prosthesis, and application of the Adjustable Tracheostoma ("hands-free) Valve.
Speech Demo Video By Eric Blom, Ph.D.
This covers approximately 10 different topics most clinicians will deal with when involved in tracheoesophageal voice restoration. This video is oriented to a clinician audience (SLPs and ENTs), but is suited for showing to patients as well (not graphic in nature). SLPs often use this to demonstrate various aspects of TEP speech to patients. It is not recommended to be shown to most pre-laryngectomy patients, and may not be suitable for viewing by some post-laryngectomy patients because of the high use of technical vocabulary.
To obtain your free copy of these video tapes call their toll free telephone number (800)477-5969. Fax: 805-684-8594. Or you can order from their Website or just by dropping them an e-mail requesting the tapes at firstname.lastname@example.org. Be sure to include your mailing address.
FREE Medic Alert Membership for Joining InHealth's Speakers Club
"We are still supplying the Medic Alert benefit for Speakers Club. The first year is free when you join our Speaker's Club and subsequent years are paid if the patient orders at least $300 from InHealth during their anniversary years."
Please check if you are interested. Their website is http://inhealth.com/
Look down the left column for Speakers Club and fill out the application. Their newsletter is always interesting.
Informational Pamphlet for new larys
Our club put together a short informational pamphlet for use both by SLPs to give to patients, or anyone needing some assurance that an active life is possible after a laryngectomy. We have sent this to Portland, OR area SLPs and have received positive feedback. It is not technical - that is best left to the medical people. As you will see, it is informal and personal.
For PDF file, write to:
TAPE FROM SIEMENS - Speech Options after Laryngectomee
The video features Richard Crum. He discusses and demonstrates TEP and artificial larynx (Servox made by Siemens). Tom Beneventine, who is a laryngectomee and works for Siemens, provides some tips for good AL use. To obtain your free copy of this videotape call toll free (800) 333-9083, ext. 3566; or by sending an e-mail request along with your mailing address to Peter Baumle.
webwhispers - free brochures
Order Free brochuress at: http://webwhispers.org/services/free-brochures.asp
Contact email@example.com for multiple copies for support groups, SLPs and hospitals. Be sure to include full mailing address, and number of brochures needed.
Questions and Answers for the Laryngectomee
From the Florida Laryngectomee Association
A downloadable pamphlet with graphics and information - download pdf
FROM THE UK
The NALC, National Association of Laryngectomee Clubs is a great resource of Laryngectomee information in the UK their website location is;
They also have free publications and information available that can be access or downloaded at the following:
Emergency Pocket Cards
If you want cards for your club, download the PDF file that you can take to your local copy shop and ask them to print one or two copies (which is 10 or 20 cards) on orange card stock,
and then cut them down to pass out.
IF you have other medical issues, you can write them by hand on the blank back of these cards, by the way. The front is deliberately simple so you get oxygen in the right place right away, while they turn the card over to see if there is anything else. Or just write see Med Alert Bracelet if that tells the rest of your story.
OVER-THE-BED HOSPITAL SIGN
Courtesy of WW Member Merritt Oakes, you can download an MSWord .doc file copy of the above sign for use in the hospital or elsewhere, as appropriate. Be sure to print out this 8 1/2" X 11" sign in "Landscape mode". Once printed out, you could place this sign above the laryngectomee patient's bed ... so that everyone concerned will know his/her breathing situation. Download sign.
HEAD AND NECK CANCER REHABILITATION INSTITUTE
I do not know if anyone still has these available and did not find anything new on the Internet search. At least you can see here what it says and you might make up a card.
Free Neck Breather Medical Awareness Skin Decal for use in hospital (to make sure the staff knows you are a laryngectomee). Decal should be placed directly below the stoma or on the back of the hand.
International Association of Laryngectomees Brochure
These full-color, informative brochures (printed in 2005) are available from the IAL free of charge for your distribution to new laryngectomees or to interested SLP's, ENT's, etc. For copies, contact:
The new address is:
925B Peachtree Street, Suite 316
Atlanta, GA 30309
non talking communication
Call (800) 477-5969 and ask for the free "Laryngectomee Needs Chart" (below - available in English and Spanish) so you can point at listed items you may need. Actual size is 8 1/2" x 11". Makes communication a little easier. A small bell for your bedside will help get attention. A laptop, if you have one, will let you type messages in detail or a Magna Doodle from the toy store is great for write and erase. So is the little magic slate.
free reading material
This newsletter was started in January, 1996. The articles range from physical care to emotional support and are written by patients, caregivers, and medical professionals. These can be found on WebWhispers.
Whispers on the Web
This newsletter is in .html and .pdf format . The articles range from personal stories to professional. They are written by WebWhispers members, patients, caregivers and medical professionals. These can be found on WebWhispers.org Read or Download copies.
Bloch Cancer Foundation/Bloch Cancer HotLine
One H&R Block Way,
Kansas City, MO 64105
Bloch Cancer Foundation/Bloch Cancer Hotline. Started by Richard and Annette Bloch in 1978 after his diagnosis of terminal cancer. We offer three books- Fighting Cancer, CANCER...there's hope, Guide for Cancer Supporters - FREE for the asking. We offer survivor to patient or caregiver matches. Resource information on cancer specific and general cancer information.
[Ed. note: WebWhispers is a resource there.]
Self Help for the Laryngectomee (The Blue Book)
Written by Edmund Lauder, Edited by Jim Lauder
For many of us, this became our one and only reference book and was well read and thumbed through daily as we learned. This will help you really understand becoming and learning to live as a laryngectomee.
PDF copy of book has been donated by Lauder Enterprises. Download is free.
From the UK, a Free Book for all laryngectomees in the UK
Our aim is to promote and assist the relief of all people in the UK who have had a laryngectomy – This includes our FREE book
‘Laryngectomy is not a Tragedy’
by Sydney Norgate and Dr Nicola Oswald MBChB.
http://www.cancerlt.org/index.html - Main Page of website
http://www.cancerlt.org/thebook.html - Direct to the book, 2013 edition can be downloaded
Resource for New Larys - "First Steps"- Revised
The IAL has recently posted on line a comprehensive revision of a very old ACS-funded booklet, "First Steps." Clubs will want to download it and print it out. It is designed for those facing laryngectomy surgery and for new larys and their caregivers.
The 20 page publication (plus covers) includes the major issues that new larys face. The publication features some brand new graphics (including 2 color drawings that symbolically represent the work that we all do) that are integral to the booklet and the content it teaches. This suggests the need for the best quality reprints. This can be obtained by downloading the PDF from the IAL website Newsletters and Documents section and printing it out on a LASER printer. (http://www.theial.com/ial/index.php?option=com_docman&Itemid=73)
This project was done at almost no cost to the organization (and that money was donated) and with the broad involvement of ENTs, SLPs, former and current BOD members, and others. David Blevins in VB,VA
"The Laryngectomee Guide”
Itzhak Brook MD
The guide is available for free viewing and download on my blog: http://dribrook.blogspot.com/.
The Guide provides practical information that can assist laryngectomees and their caregivers in dealing with medical, dental and psychological issues. It contains information about the side effects of radiation and chemotherapy; the methods of speaking; airway and stoma care, and voice prosthesis. In addition it addresses eating and swallowing issues, medical, dental and psychological concerns, respiration and anesthesia, and travelling as a laryngectomee.
This is Dr Brook's second book. His first was My Voice and is also available on his website.
This book is not avalable free from ATOS.
The book is also available from the The American Academy of Otolaryngology for free download.
More Recommended Reading
Free or Low Cost
BOOKS WRITTEN OR RECOMMENDED BY MEMBERS
Note: When you are translating with a computerized translator, the word it selects may not have quite the same meaning as intended by the original, and because phrasing is not changed, it may be misunderstood. Be careful especially if you are translating medical text or explanations.
Translates text and web pages from one language to another, including English, German, Spanish, French, Italian, Portuguese, and Russian. Babel Fish
For those of you interested in cancer care and who care for patients who speak Asian languages, see Cancer Information Translated Into Asian Languages. The Asian Pacific Islander Cancer Education Materials Tool offers healthcare information translated into various Asian languages. The site was produced by the American Cancer Society and the Asian American Network for Cancer Awareness, Research and Training.
NEED TO SEE AN EYE DOC?
The non-profit Seniors EyeCare Program, formerly known as the National Eye Care Project, is sponsored by the Foundation of the American Academy of Ophthalmology, Knights Templar Eye Foundation Inc. and Alcon. It has been operating since 1986 and has helped more than 1 million seniors gain access to medical eye care.
Under this program, if you are a U.S. citizen or legal resident age 65 or older, have not seen an ophthalmologist in the last three years or more, and do not belong to an HMO or have Veteran's vision care, you can call a toll-free number for the name of a volunteer ophthalmologist in your area.
Then, you make an appointment for a medical eye examination. The ophthalmologist will treat any condition he or she diagnoses during that first visit. If ongoing care is required for the condition, it will be provided free through this program for one year. However, the program will not cover the cost of eyeglasses, prescription drugs, hospital services or fees from other medical professionals.
If you think you are a candidate for this program, or if you know a senior who is, please call this toll-free helpline : 1-800-222-EYES (3937).
free or low cost medicine
Please check our Drug section:
We have references for help with medicines.
We do not recommend these sites but we do recommend you check them out.
Free and Low Cost Prescription Drugs and supplies, Coupons, Advice
What you need - When you need it.
Are You Having Trouble Paying for Your Prescribed Medications?
Patient Assistance Programs are Here to Help.
STUDENT ASSISTANCE FOR THOSE WITH SPECIAL NEEDS
The special needs assistance and scholarships include those with hearing, speech and swallowing issues. For those going to school or going back to school, it is worth checking into what is offered.
Special need assistance can be found from the following link;
Financial scholarships for students with special needs can be found at the following link:
This also includes resources for graduate students with needs.
Resource guide for students with disabilities- http://www.affordablecollegesonline.org/college-resource-center/resources-for-students-with-disabilities/
Learn How to Become is a website that has guides to help Veterans in choosing a school and resources.
Affordable Colleges Online. They have some great resources for students with disabilities, scholarships and more. You can select by state and compare costs including cost of living in the area. You can find more information here: http://www.affordablecollegesonline.org/
FREE BENEFITS INFORMATION
BenefitsCheckUp ? a free, easy-to-use service that identifies federal and state assistance programs for older Americans. Researching these programs used to be a time-consuming, frustrating experience. But no longer. The National Council on the Aging created BenefitsCheckUp to help older adults to quickly identify programs that may improve the quality of their lives. Family and friends can also obtain facts about benefits that their loved ones may qualify for. Chances are, you will be surprised to learn what benefits are available to you, regardless of your income. Here's how it works: You take 10 or 15 minutes to enter information about your financial situation into an online questionnaire. Then, BenefitsCheckUp explains what benefit programs you may be eligible for and how to apply for them. Rest assured that BenefitsCheckUp is completely confidential. It does not require your name, address, phone number, Social Security number, or other information that could be used to identify you. You enter simple information, such as your age, income, and ZIP code, and BenefitsCheckUp identifies programs you might qualify for.
For suggestions, contributions, corrections or questions about this section, please contact: