StillTalking.org
Laryngectomee Association of NSW

NSW emblem BECOME A MEMBER TODAY!!! click here
Due to the COVID-19 virus, ALL MEETINGS, including the AGM,
have been SUSPENDED UNTIL FURTHER NOTICE.

Sydney City meetings are normally held at 10:45am
on the third Wednesday of months March to November at:

First Floor, SMSA (Sydney Mechanics' School of Arts)
  280 Pitt Street, SYDNEY  (click for map)
For the Meeting Schedule including other locations around NSW click here
CORRESPONDENCE :link to Officers & Secretary/Treasurer
Email: lansw@stilltalking.org   admin@stilltalking.org

Welcome to StillTalking.org

After Laryngectomy surgery a person is confronted with a whole new way of life, no matter how much everything may seem to remain the same. Laryngectomees may become antisocial from experiencing difficulty in talking in group situations, in a noisy environment or where they feel they are breaking the flow of conversations through their difficulty with speaking. A Laryngectomee support group is the ideal place to practice socialising. Other Laryngectomees and their family and friends will be able to relate to any problems and provide a comfortable environment which encourages communication.

In addition, a Laryngectomee support group is the best place for a new Laryngectomee to receive information, exchange ideas and discuss problems with people who have been through the whole Laryngectomy experience. Hospital professionals give general advice and information immediately before and after a Laryngectomy to a person in a fairly traumatic situation and a lot can go in one ear and out the other. Also, ongoing problems may not become apparent until months after the operation and any associated radiotherapy or chemotherapy.

The Laryngectomee support group, possibly more importantly, is the place where spouses can meet other spouses of Laryngectomees to share frustrations and personal experiences that might seem like difficulties that only they, in all the world, are confronted with.

Our Association attempts to reach as many patients who undergo a Laryngectomy in New South Wales as possible, in order to let them know that support groups exist, their aims, purpose, when and where they meet along with contact numbers. Then, obviously, it is up to the new laryngectomee to make the effort to attend their most accessible support group to find out what benefits it can offer them and hopefully they can give their input in helping others who become Laryngectomees after them.

DON'T FORGET ONE OF YOUR BEST FRIENDS WILL BE YOUR SPEECH PATHOLOGIST!

Ten monthly newsletters are distributed by mail and/or email to members each year.
Back issues of LANSW newsletters 'Still Talking' are available here on the website as a resource for laryngectomees, carers and support groups and can be browsed or searched using keywords or phases for many helpful and informative articles. Our archives also contain a number of informative articles. Items no longer current are here.
Back Issues of "The New Voice", Newsletter of the Laryngectomee Association of Victoria Inc. have also been made available.

Anyone interested in the history of the Association may like to browse archival Newsletters. Years 2006, 2005, 2004, 2003, 2002, 2001, 2000-07, 2000-01, 1999, 1998-1997, 1996, 1995, 1994, 1993, 1992, have been uploaded to yearly pdf's and available via the previous links but, as yet, content is not indexed on the Newsletter webpage. It is interesting to see how some themes have changed while others are just as topical.
June 1999 and earlier editions of LARO-LINK, the newsletter of the now defunct Queensland Association are interspersed with NSW's.


News: (click links to read)          

re COVID-19 and laryngectomees see Members' & Visitors' Forum.   updated March 31, 2020

New Website for Laryngectomee Association of Victoria Inc   laryassocvic.org

You will probably have noticed that this homepage is in a different, more structured, format. For familiar content, you can link to the previous format by clicking: legacy Homepage.
Please email COMMENTS, SUGGESTIONS, CRITICISMS to admin@stilltalking.org

March 2020 Newsletter Editors opinion only: COVID19; "Can you hear my voice?".

February 2020 Newsletter Christmas Luncheon Photos; Further update on Bionic Voice research; Annual General Meeting 11Am, Wednesday, March 18, 2020 Nomination form.


Resources

YouCanSayThatAgain
Our hardcopy booklet "YOU CAN SAY THAT AGAIN" printed in association with the Cancer Council of NSW
is available as a PDF file as of 25/02/2010 for VIEW or DOWNLOAD
It was produced as a reference, guide and helpline for those about to have, or have had, a laryngectomy, their families,friends, carers.
The purpose is to assist them towards a positive rehabilitation and future and to give confidence that they will speak again.

It is now available as an updated interactive WEBPAGE which is currently under development.
A PDF format copy of the A5 booklet that would be produced from the webpage can be viewed/ printed/ downloaded. Readers are invited to contribute their ideas. It will be used to produce the Fifth Edition hardcopy booklet.
FOR SUGGESTIONS, COMMENTS, CRITICISMS re this booklet or WEBSITE:   please email admin@stilltalking.org

SmoothAsSilk CookBook Our "Smooth As Silk CookBook"
is now available ONLINE in two forms:
for viewing as an updated WEBPAGE and
as a
EBook MOBI file as of 18/02/2012 for DOWNLOAD
Printed version is out of stock.
It was compiled and produced by the
Laryngectomee Association of N.S.W. Inc.
FOR THOSE WITH SWALLOWING
AND/OR
CHEWING DIFFICULTIES

FOR SUGGESTIONS, COMMENTS, CRITICISMS re this WEBSITE or booklet:   please email admin@stilltalking.org

" General Information & First Aid " (for Lyngectomees & Carers), an excellent A4 double sided flyer entitled has been revised and made available as a webpage and a pdf in two versions. The second is mostly black and white.
QUESTIONS TO ASK YOUR DOCTOR from the UK Throat Cancer Foundation website
Itzhak Brook's MD. (USA) blog site contains his books, manuscripts and videos about his personal experience as a patients with throat cancer and life as a laryngectomee.
larySection

Dr Itzhak Brook has announced the publication of "The Laryngectomee Guide Expanded Edition”. The 254 pages Expanded Guide is an updated and expanded version of the earlier 2013 edition. It contains twice more information on all topics, and also describes newer devices and products available for laryngectomees. The Expanded Edition of the Guide can assist laryngectomees and their medical providers by providing information about side effects of radiation and chemotherapy; methods of speaking; airway, stoma, and voice prosthesis care; eating and swallowing; medical, dental and psychological concerns; respiration; anesthesia; and travel. It is available in paperback and eBook versions.
The eBook is available for Free reading and download at https://goo.gl/gecLgq
A paperback version can be obtained at: https://www.amazon.com/dp/1976852390
A Kindle version can be obtained at: https://www.amazon.com/dp/B078X283B8

http://www.speechtherapytoolbox.com/laryngectomy.html A particularly useful resource supplied via our retired newsletter editor, Antoni Krasnodebski.
See links page for more resources.
for CONTRIBUTIONS TO THE NEWSLETTER, email admin@stilltalking.org

Laryngectomy Supplies stocked by the LANSW and sold at cost: click here for items

Videos   click for captions & choice of videos

video montage of stills
YakityYak(UK)Wally Bak (Sydney)Robert Manne (Melbourne)
Singing CowBoy Larys (Victoria)

Research & Development

Swallowing Research sponsored by LANSW (An article in a StGeorge newspaper)
For those interested in the potential application of modern technologies to aid laryngectomee communication, watch this space. The Association has recently (June/July 18) been contacted by groups from both MIT and a Singapore startup who are looking for feedback from larys re the application of subvocalisation and Brain-Computer Interface (BCI) to assist communication. A webpage is under development which will include the email conversations. This is in addition to the Bionic Voice project previously noted. You are invited to send comments/contributions to admin@stilltalking.org
August 2018 Newsletter Pneumatic Artificial Larynx (PAL) Can Produce a More Natural Voice. (Bionic Voice Project Update); Immunotherapy

Members' & Visitors' Forum

from March 2020 Newsletter Editors opinion only: COVID19.

Newletter Editors opinion only:
COVID19

We gave you information last issue about protecting yourselves from the above, by Dr Itzhak Brook.

We did this to protect our members but I don’t think it was sufficient: enough.
The virus is spread 3 ways:
Viral droplets from coughing and sneezing
Aerosol droplets from just breathing them in, if your within 6 feet of an infected person
Touching surfaces that have the virus on them then touching your face.

The virus can only enter the body through the mouth, nose or eyes.

So theoretically lary’s need 2 masks, one for the stoma and another for the mouth and nose.
They should try to stay away from people by at least 6 feet.
When they leave the house they should avoid touching their faces as they will surely come into contact with surfaces. Also thoroughly keep their hands sanitised. It Has been found that the virus can survive from up to 2hours too 9 days on surfaces. For more info go to WHO

https://www.who.int/

Keep safe
george


COVID-19 and laryngectomees concerns.
by admin@stilltalking.org: a fellow laryngectomee with a scientific background but NOT a medical professional.   March 15, 2019.

LANSW Newletter Editor George's article above gives excellent advice, particularly the reference to WHO and the link to their advice.
Laryngectomees do have the extra potential entry for the virus via the neck stoma. Larys tend to have various reasons to contact their stoma with their hands, particularly if using a voice prosthesis without a hands-free HME. They should pay particular attention to good hand hygene.
Health workers who are laryngectomees would need to take special precautions.

If larys are more at risk of infection than the general population, it is unlikely to be because we breathe through a neck stoma but more because we generally are in the older age bracket and may have other issues associated with the original need for the laryngectomy and with treatment which may have lowered our immune system effectiveness.
"The Conversation" article on viral infections (referenced in item below but one) suggests a possiblity that we may be less at risk as we do not actively draw air through the upper respiratory tract.

Masks are probematic for larys. Dr Brook's article illustrates ellaborate prodedures to allow larys to make use of a mask. It should be born in mind that a mask primarily functions to protect against transmission from the wearer rather than protecting from infection by airborne viruses. The WHO site pays particular attention to the proper handling of masks which would particularly difficult for larys. WHO recommends:"

In my opinion, it is disingenuous of suppliers to use the current situation to promote the use of special HME filters as being efficacious in protecting the wearer from infection by airborne viruses. HME filters can be effective in removing some airborne dust particles that might otherwise potentially block alveoli in the lungs of larys particularly those whose respiratory tract cilia function may have been impaired.
To be effective against airborne viruses, a filter would need to be so fine that the wearer would struggle to breathe though an normal HME-sized filter or else so large as to be impractical to wear attached to a HME base.

extended March 31, 2020
An LANSW member emailed:
"A project for the Association would be to lobby the Health Minister to urgently fund Enable so that all HME’s could be upgraded to the higher levels such as Extra Moist and all could also be provided with a supply of the Micron which offers better than 99% viral and bacterial protection."

I was interested to read his view. Dr Itzhak Brook would seem to support his view re the Micron HME {but adds further measures). The recently posted article on this forum conflicts somewhat with their suggestions. The email did prompt me to look at specs of Atos' Micron and to email Atos requesting a price. They don't make it easy to get specs or prices.   Expand

The Micron HME would appear to be somewhere between two and three times the standard HME size. You could look at specifications for viral filters on medical respiratory devices: https://www.cdc.gov/coronavirus/2019-ncov/hcp/respirator-use-faq.html gives a good summary of mask and respirator use. To me, the indications are that, without extreme measures, masks and filters serve to prevent transmission from the user rather than to the user.
All other things being equal, Larys are likely less vulnerable to COVID-19 because they don't draw air through their nasal and pharyngeal passages which is the normal point of infection. Normally, after infection, secretions from the nasal and pharyngeal passages pass down through the trachea to carry virus laden secretion into the lungs. As there is no longer a connection via the larynx, if a laryngectomee was infected, these nasal and pharyngeal secretions could only pass through the oesophagus to the stomach (to be digested).

If a laryngectomee needs respiratory intubation and mechanical ventilation because of pneumonia, emphysema (or COVID-19), the process is potentially much simpler than for non-larys. Normally the tube is introduced via the mouth or else a tracheotomy and requires anesthesia or sedation. The lary has a ready made entry for the tube and is generally more tolerant of the tube and inflated cuff provided it does not extend too far towards the carina. Thus the lary can potentially avoid the need for sedation and hence not require an ICU.
A problem could be, particularly when the medicos may also be under stress, that standard procedures are engaged without recognition of the special characteristics of us neck breathers. Many of us have had experience of oxygen masks being applied to our nose/mouth instead of the stoma until their attention is brought to the stoma.

If anyone has knowledge of a laryngectomee who has been infected with COVID-19, it would be valuable if they could inform us of their treatment and progress.

If in any doubt about health issues, laryngectomees should contact their health professional e.g. doctor, speech pathologist or specialist? especially now that we can arrange bulk-billed Telehealth calls via phone, Face Time or Skype.

Some quotes from the May 2018 The New Voicethe Newsletter of the Laryngectomee Association of Victoria:

"Lorrance then explained to our newcomers that the first part of our meeting was run like an open forum in order to encourage people to talk about what they may be going through following their surgery and recovery, their problems and concerns their successes that worked for them. Any topics that are subsequently arise will generally be a guide for content of future newsletters where relevant."

"Lorrance commented that there was a lot of wisdom mixed up with the chatter in this part of the meeting. He emphasized to our new members not to be frightened to ask questions. You may not always get an answer straight away, and it may not be a professional medical text book response either. In fact laryngectomees through their own personal experiences have sometimes found quite simple ways of fixing problems using plain commonsense. Lorrance said we are not mind readers unless you speak up and tell us about an issue you may be facing we can’t offer you help, so again, please don’t be frighten to speak up."

" annual subs from those who pay them (30% to 40% actually do pay their subs),"

"In regard to the New Laryngectomee Bag Presentation Pack Project initiated by Lorrance, we have put 50 odd bags in circulation via the hospital system in the past two and half years. We are trying to make these bags available to all new laryngectomees to help them. "

Some observations on membership: by Greg Joss    Show

I’ve always wondered: why is the flu virus so much worse than the common cold virus? "The Conversation" September 21, 2017 11.05am AEST
Since my laryngectomy in 2010, I haven't had a cold but I succumbed to the recent flu epidemic. An article in "The Conversation" contains an explanation. As a lary, I no longer breathe air through the upper respiratory tract so the viruses responsible for colds don't get easy access to the tissues lining the upper respiratory tract
Typically, rhinovirus binds to a receptor on the surface of cells in the nose and sinuses.(ie upper respiratory tract)
The flu virus can infect both the upper and lower respiratory tract, which in part explains its ability to cause severe disease.

Our retired newsletter editor, Antoni Krasnodebski, emailed: a fantastic link with a host of resources for laryngectomees www.speechtherapytoolbox.com/laryngectomy.html Antoni, encourages all of you to visit the National Association of Laryngectomee Clubs (UK)(NALC) website: "it is certainly a humdinger". Antoni also suggests Laryngectomees Association of Peru "Even if you can't speak Spanish it is worth a visit. They put an impressive amount of effort into combatting the tobacco companies" Google Chrome does a good job of translation.

Social Media

SPbanner Strictly Speaking is a FaceBook group, based in Sydney Australia, for people who have had or are about to have a Laryngectomy. Their family, friends and of course health professionals are more than welcome also. Members can post questions and receive replies from each other, tell of their experiences, whether good or bad and generally help each other with the changes that affect us all on our journey as Laryngectomee's. In view of the sensitive nature of this group, posts on politics, religion or anything considered offensive or abuse of another member will not be tolerated and the offending member will be given a warning. Should this behaviour continue the member will be removed from the group without further warning. Your understanding in this matter is greatly appreciated. We hope you enjoy your experience in this group as your input and advice will be warmly sought and encourged. Have a great day!


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