How We Live
- Travel - Near and Far
- Keep Active
- Everyday Living
- Local Support Groups
- Laryngectomee Humor
- Miscellaneous Hints
Note: For information on CPR and concerns for Anesthesia please refer to the "Possible Problems" section under "CPR and Anesthesia".
Do Some Reading
Mike Dreisbach has an article, about testing your ability to drive
Drinking & Driving? You, Too, Can Be Tested!
He recently wrote:
Many times we, as laryngectomees, develop other medical issues for which no known device is available. Such is the case with those "larys" who drink and drive. The only way currently available for law enforcement to test us for an impairing substance is via a blood test. As I wrote in an earlier article I have developed such a device to allow a "lary" to perform the required breath test.
This same device could possible work for those of us having to undergo
pulmonary testing. Depending on the size of your stoma opening a regular baby bottle nipple with a larger opening at the end and a catheter will allow a "lary" to provide the require "breath" of deep lung air for the intoxilyzer. Should your stoma opening be rather large and maintaining a good
seal is an issue, try a calf bottle nipple. The same holds true in regards to the opening at the end BUT the tubing one will use is about 1/8 to 1/2 inch in diameter. Again this will allow the suspected impaired driver to "blow" into the Intoximeter ( a newer model) and provide a deep lung "breath" sample to determine impairment.
SAFETY HINTS [from our members]
HOUSEHOLD PRODUCTS DATABASE
I was searching on the internet for a household product this morning and came across the following database that is available thru the National Institutes of Health (NIH).You can search by categories, types of products, or any ingredient. The section with the title MSDS will show you the Manufacturer's Safety Data Sheet for the product. It is required on products and lists all the ingredients, side effects, and warnings. This database includes products used in Auto, Landscape, Pet Care, Home Maintenance, Inside the House, Personal Care, Arts & Crafts, Home Office and Pesticides. http://hpd.nlm.nih.gov/index.htm
Some laryngectomees have difficulty wearing automobile seat belts.
1. Check out the Seat Belt Clips available at Amazon.com. This might move the belt just enough for you to comfortably wear it. (Dutch Helms)
2. I went to a store that made heavy canvas awnings. I took two ring snaps ( get at any hardware store) and had them fold heavy canvas at least three times and sew me a strap. Had a loop in one end and the snap in the other, I bolted an eye bolt to the floor of my car on the left side of my seat and I am set to go. I slip the loop over my regular seat belt and snap the hook into the floor eyebolt. It took a little accurate measuring but it works like a charm. My belt now rides across the center of my chest away from my stoma and I am very well anchored in my vehicles. I have to fasten the installed car belt and then snap my hook into the eye bolt. (Ron Gillette)
3. Take a small paper cup (the three ounce size will do just fine) and place it between your chest and the seat belt. This will take the seat belt off of your stoma but, in the event of an accident, the belt will have only been extended by two inches or so and the paper cup will easily collapse to allow the belt to do its intended job. You can also use a piece of thick foam to do the job. (Syd Gartenberg)
4. Although I am not a lary, I am short and have never used a seat belt comfortably until I copied my even-shorter mother, who used the fleece-like neck pads that fit on seat belts with velcro, found at automotive supply stores. (Beverly Stewart)
5. I had surgery 1985? Had lymph nodes removed, radiation, (cancer of tongue) All on left side of head. Asked Dr. about seat belts and he gave me letter to not wear one. No mandatory law at that time to wear one. In 2001, had laryngectomy. Washington State made it a law, wear a seat belt or a $80 fine. You will be pulled over for not wearing a seat belt and it is nice to have a Dr's letter but you still will get pulled over to show the letter. (Ed DeBaugh)
AIRBAGS IN CARS
1. Some people have wondered about having the airbags in their cars inactivated due to concerns of the dust when deployed. Here is my answer to that. The benefits of Vehicle Safety Airbag Systems far outweigh the risks of the few dust particles released at the time of their deployment. Some dust is released (a type of talcum powder which allows the airbag to deploy more efficiently). This dust will quickly dissipate into the atmosphere after such deployment.
One MIGHT inhale a little bit of dust from a deployed airbag but it will likely have saved one from busting your noggin on the dashboard, getting ejected through the windshield, breaking ribs on the steering wheel or other severe injuries. Best to leave the (SRS) Safety Restraint Systems activated. (Michael Csapo - Graduate Class of 2000)
2. I just had a head on collision in September this year and the truck was totalled, both air bags. It felt like a hard punch to the face. The point is I was uninjured. There were no bad effects (at least not yet) from the dust. I am very glad the bags were there, the technology works.
3. I called the body shop I deal with and asked about air bags. They told me that there is some smoke when they deploy and afterwards there is some fine powder like a fire extinguisher. When I asked about how much they were very vague but it sounded like it was minimal. It seems to me that any powder inhaled would probably be more annoying than hazardous. (Tim Hembree)
WHILE SANDING, DUSTING, MOWING, WOODWORKING.
Ideas of covers to wear when using equipment that raises dust. Wear any combination that does the job for you.
1a. Stoma bib. It helps to catch and hold moisture as you breathe. If you are raking leaves, woodworking, vacuuming, or doing anything that raises dust, dampen your bib so it will clean the air for you. Many of us use these for simple cover up
1b.Make a heavier stoma cover: I cut out two pieces of craft felt - usually a 2” circle. I cut a 1/2” hole in one and then stitch or glue the edges together. Slip it over the HME and it is a cheap filter. I sometimes spritz with water. It works well for dust – I work in a woodshop. The paint and fume problem is a little more complicated. I cut a face mask into the shape of a neck trache mask, overcast or glue the edges and shorten the elastic to hold it in place. I have used a bandana too, but it gets to warm. The felt doesn’t overheat my neck, just the lung air and helps retain moisture. I also use the felt in the winter as a HME coat when its cold.
Jody Ann Black
1c. Foam stoma cover and a cloth one over it. You will have to be careful around sanders (hand, disk, belt) and anyone sanding on a lathe.
2. A Turtle Neck makes a nice seal around the top of the neck.
3. Hi-flo HME cassette 24/7 in a long fenestrated vent, but when I do any furniture building/re-modeling I wear a heavy stoma cover snugly fitted and over that the standard face mask for nose and mouth but put it over the stoma area. I only have hand tools in the apartment, but the power sander specially generates a ton of sawdust and it gets everywhere in the place. But not in the stoma. I have never seen any evidence in that area.
John S.—Class of ‘05
4. As I have written in the recent past, I have been searching for a respirator that would work for us neck breathers. Well, I have found one that seems to do more than I need and is at a reasonable price. It is a Triton Powered Respirator - Model # PRA001. It cost me $ 179.99 at Amazon.com. ( Note 8/2012: It looks like they this product is no longer available. There are however similar system used for welding and other uses. They can be expensive, so check around.)
It has a belt held filter/blower unit that is charged by rechargeable batteries. It says it runs for over 4 hours per charge. It has a combined approved hard hat, face shield and ear muffs unit that is attached to a nylon protective shroud that hangs down around your neck and upper chest - covering your stoma. Filtered air is pumped in through the belt pack, via a hose into the back of the helmet. The air is forced into the helmet/shroud providing filtered air to your face and stoma. You can flip up the face shield, but it must be closed to function properly. You can use the ear muffs, or they can be kept open to allow you to hear.
This unit says it is not designed for poison, flammable gas, explosive dusts or chemical vapor protection. It is designed for protection from mechanically and thermally generated particulates as would be found in such things as wood working, metal work, and welding.
5. You might try the inexpensive, throw-away, painter's filters. You will have to trim them. I found cutting the top part of the circle straight across allowed me to lay it over my stoma, but the rubber band they have is useless for us. I tried stapling on a piece of cord at each upper corner and it fits nicely around the bottom of the curve but if you want a better seal, which is a good idea when you are kicking up some dust, use a few short pieces of tape to hold it in place. You can breath through this easily, dampen it to catch fine dust, and toss it when you are through. (Pat Sanders)
6. ADVICE FROM 3M: (forwarded by our member)
The systems noted under safety are adequate for the hobbyist, but for those working professionally with heavy dust and fumes, they will need a professional system. The only one I have come across was the one that Nancy and Brian Nagle led me to and the one and only that 3M recommends. The information follows. It is costly and not necessarily for the amateur.
Jody Ann Black
Thank you for your interest in 3M respiratory protection products. Although 3M doesn't offer a respirator specifically designed for someone with your condition, there are respirator systems that may offer you some protection. Specifically, A loose fitting hood with a Powered Air Purifying Respirator (PAPR) such as the 3M H-Series Hood with the GVP Series Belt-Mounted PAPR is suggested. The H-Series is a Tyvk QC hood with shroud that covers past the shoulders. The neck region would be enclosed within the hood. Once again, please be aware that the system has not been tested for use by someone with a tracheostoma.
The system would need to be purchased in components. I've provided a list below of recommended components for a typical woodshop application and have attached product files for both the H-Series and GVP PAPR. Additional product information may be found on our website at http://www.3m.com/
Please let us know if we can be of additional assistance.
Recommended H-Series/GVP PAPR Components:
H-421 Hood Assembly w/ Inner Shroud
GVP-122 Breathing Tube
GVP-1 PAPR Assembly (Motor Blower, Battery, Power Cord, Charger)
GVP-441 Organic Vapor/HEPA Cartridge
Paul Puncochar CIH
Technical Service (800)243-4630
3M Occupational Health & Environmental Safety Division
7. I have a several woodworking tools in my garage which includes a computer operated wood carver. The wood carver generates a lot of dust and I found the following equipment which worked for me. From Harbor Freight (approx $100). This unit is very portable and can be hooked up to any wood working machine. They also have larger units.
Here is a link to the item for more information:
1 HP Mini Dust Collector, Shipping weight: 21-1/2 lbs.
Perfect for the shop, work site or garage. This 12 gallon compact unit
is as powerful as many stationary collectors.
* Filters particles down to 35 microns (half the width of a human hair)
* 914 CFM
* 4" inlet/outlet
120V, 6.8 amps, 750 watts; 1 HP; Dimensions: 13-1/4'' L x 12'' W x 12'' H
I also use a silk bib.
Take care, my friends
8. The micron filter available from ATOS will help, however if he is in a lot of dust it will plug up pretty quickly. The cost to go through them quickly could be high. I do some hobbies like wood working and working on cars. I use a dampened stoma cove or bandana over my HME that helps catch a lot of the dust.
They also make filtered respirator units but they can be very costly and it is very hard to find one that will work for us.
I have a friend that painted his truck and he made his own filter system.
He took a PVC elbow connector that fit into his baseplate and used some of the blue oxygen hose (a CPAP hose works well). That went down to a filter he purchased from an auto paint supply, that he put on his belt. The problem with this is that you are be breathing out the same way as you breathe in.
That is OK for a one time use but the moisture that we breathe out will cause bacteria to grow in the hose and filter, if stored. It worked well but should be discarded after use.
Another option is to use an external air supply with a hose to a trach mask.
This can be built from one of the air supply units that most of us had to provide moistened air after surgery. This would take some ingenuity and of course the hose could be a problem. The supply would have to be located out of the dust area of course.
Laryngectomee Traffic Stop
Video on how to behave
furnished by San Antonio Police Department & San Antonio Lost Chord club
License information for police or First responders
There has been concern that a police officer might mistake our Electrolarynx as a mace or stun gun. The idea came up that if we could put a message that was entered into the database for our driver's license or the car registration that we used the device to talk, that would put the officer at ease when he saw the unit in our hand. The distracted driving laws in many states make it illegal to hold any electronic device while driving, even when stopped. I looked into this with my state (Washington) and there is no way it could be added, so I contacted my state Senator to ask if it could be done. Our state did add the use of the Electrolarynx to the training for every officer so they would be aware of them and the use. You might check into your state to see if it is possible. If enough of us pursue it, we might be able to make it happen.
Safe Driving from Teens4Safety
Driving can be challanging for all of us especially as we get older. Here is a site that has a lot of tip to help us stay safe.
Mike D has also written two articles for HeadLines, Call 911, Part One
Mike tells you what to do if you need to call 911.
Part Two of that article is at:
It contains a form for info you should have ready to show.
TAKE CARE OF YOUR "911" NEEDS
After reading several suggestions about contacting the local "911" dispatcher regarding my "condition" as a laryngectomee, I recently decided to do so. I felt this especially important, given that I, like many laryngectomees, live alone, AND, it occurred to me that perhaps a situation could arise wherein I would need "911" assistance, but would be unable, for some reason, to actually SPEAK.
First, since I was not really SURE where my local "911" dispatcher was, I called "911" to get the correct office address. I then drove over and popped in for a visit. They could not have been nicer! I explained my "problem" (being a laryngectomee and a "neck-breather") and asked THEM what information THEY would like to have on hand should I ever call them and be unable to speak. They happily provided me with a short list with which I returned home to complete. The following day I returned to their office with the information which they promptly added to their computer system AND to a back-up Rolodex system. They asked me to go back home, wait an hour or so, and then call them to "test" them ... so that I would know that the "system" was up and running as it should be. I did this and, predictably, it worked just fine.
So, now, if I call "911" and am unable to speak, the dispatcher now has immediate access to the following information on me:
(1) Name, Address, Telephone Number, DOB, and that I live alone.
(2) That I am a laryngectomee (no vocal cords), speak via a voice prosthesis, am a total neck breather, have had a single coronary bypass operation, and have O Negative blood type.
(3) Name, Address, & Phone of two emergency contact persons. (An out-of-state primary family contact and one local good friend.)
(4) Name, Address, & Phone of my Primary Physician & ENT.
(5) Listing of the medications that I take daily.
(6) Preferred local hospital for Emergency Care.
(7) Name & Phone of my Medical Insurance Carrier.
(8) My Medic-Alert ID Number they can use to contact Medic-Alert. (I wear a Medic-Alert ID bracelet.)
Needless to say, the experience was painless, short, and, I must admit, LONG OVERDUE. I certainly feel a lot better now about calling "911" if necessary. That I would recommend that ALL of us do this or something similar is a clear understatement. While I am sure each "911" office may have its own unique preference for what information they would like to have, taking the time to provide it would seem well worth the effort and would be a significant contribution to your own "peace of mind." (Dutch Helms)
At our monthly support group meeting with an Assistant Chief for EMS, he talked about calling the local fire department (non emergency number) and requesting to be entered on their CAD (Computer Aided Dispatch) system--basically telling them that you are a laryngectomy (neck breather) and MAY not be able to speak for whatever reason. You can ask them to test the system. If they are not busy at that moment, they may have you call 911 to see what shows up on their system. DO NOT CALL 911 to test this out until you ask permission to do so first, otherwise, you may get in a bit of trouble. Anyway, if you do ever call from your HOME PHONE (not cell), and they see this message, they will automatically send an ambulance, not a police car--even if you don't say anything. Each community may be different in what they can accept into their system. Dutch Helm wrote about this quite a while ago on what all he had in the system where he lived in Texas (this article can be found in the IAL News--November 2008, page 20 and in the WW e-mail archives from June 8, 2003). Our local Fire Department said that Texas is very advanced. Not every system is going to be quite that good.
PERSONAL MEDICAL INFORMATION
An Assistant Chief for EMS gave us forms at our support group meeting to fill out with personal information--name, conditions, meds, etc. You can ask your local emergency personnel where they usually look for this information if they have to come to your house. Our speaker said they usually look on the inside of kitchen cupboards, in a plastic bag IN the refrigerator, or on the front of the refrigerator, in your purse or wallet etc. Considering confidentiality, put this information wherever you feel comfortable.
We discussed the CO/Gas monitor for those of us who can't smell with our nose. We have ours located in our basement near the gas furnace and in our bedroom. At first, we placed the bedroom monitor on the same wall as the register. The alarm went off a couple times at night and even during the day--just plain being annoying. We finally figured it had something to do with the register. We've since moved it to another wall and so far, so good. The directions with the monitor say not to place it in the kitchen, and especially if you have a gas stove as whenever you turn the stove on, it will give off enough gas to start the alarm. There is more about the CO/GAS Monitor in the WebWhisper e-mail archives on January 20, 2008.
Vicki Metz [Class of '96]
I.C.E. (IN CASE OF EMERGENCY
I.C.E. (In Case of Emergency) is a something that we can enter in our cell phones, and that the emergency personnel are trained to look for as to who to call in case of emergency. There was an article on this in the IAL newsletter found on page 9 of the February 2008 issue and in the WebWhisper e-mail archives from November 9, 2008. You would enter "ICE" (you can then put #1, #2, etc. in the order that you want people called) then a name of a person with their phone number (whoever you would want to be called). You can certainly enter more than one name.
Vicki Metz [Class of ‘96]
We all carry our mobile phones with names & numbers stored in its memory but nobody, other than ourselves, knows which of these numbers belong to our closest family or friends.
If we were to be involved in an accident or were taken ill, the people attending us would have our mobile phone but wouldn't know who to call. Yes, there are hundreds of numbers stored but which one is the contact person in case of an emergency? Hence the 'ICE' (In Case of Emergency) Campaign.
The concept of 'ICE' is catching on quickly. It is a method of contact during emergency situations. As cell (mobile) phones are carried by the majority of the population, all you need to do is store the number of a contact person or persons who should be contacted during emergency under the name 'ICE' (In Case Of Emergency).
The idea was thought up by a paramedic who found that when he went to the scenes of accidents, there were always mobile phones with patients, but they didn't know which number to call. He therefore thought that it would be a good idea if there was a nationally recognized name for this purpose. In an emergency situation, Emergency Service personnel and hospital staff would be able to quickly contact the right person by simply dialing the number you have stored as 'ICE.'
For more than one contact name simply enter ICE1, ICE2 and ICE3 etc. A great idea that will make a difference.
This is an excellent suggestion. I have been carrying three "ice" numbers in my cell phone for years.
FROM THE LOS ANGELES FIRE DEPT WEBSITE:
http://lafd.blogspot.com/2005/08/lafd-talks-about-ice.html The Los Angeles Fire Department supports the original ICE concept as a free and potentially helpful tool in the minutes and hours that follow an emergency. However...Contrary to several chain e-mail warnings, ICE is not something that Paramedics rush to look for the instant they arrive at an emergency, and is certainly not required in order for LAFD Paramedics to provide quick, focused and compassionate emergency care.
We tell people: Add ICE contact information in your cell phone only after you've affixed similar information to (or near) the official photo identification you routinely carry in your wallet.
With so many types and brands of wireless phones, it can take precious minutes to learn how to access a phone's directory. Many wireless devices are also found to be locked, damaged or have discharged batteries following an incident, rendering ICE unusable.
Please do encourage your interested friends and colleagues to make a free ICE entry in their cell phone, especially if it will give them peace of mind - but not at the expense of written emergency contact and medical information.
The free original ICE concept works best when it is part of a comprehensive family or business plan for dealing with emergencies and disasters.
Whenever you have questions about the policies and procedures that Firefighter/Paramedics use in handling emergencies, please do not hesitate to visit your Neighborhood Fire Station.
Prior Preparation & Education Can Save Lives
December 1995, Nancy had a laryngectomy after they discovered cancer of the esophagus and voice box (larynx). She had radiation afterwards in an effort to keep the cancer from spreading and encountered other struggles but she was a brave woman and learned to adapt. In 2005, we moved to Missouri and were comforted to know there was a hospital nearby but we later found the hospital was not familiar with, nor equipped to handle, laryngectomees.
The local emergency personnel were unfamiliar with treating people in her situation and did not have the correct supplies. In the end, Nancy died at the hands of uneducated health care workers who were under trained and ill equipped to take care of a laryngectomee. There was confusion about how to give her oxygen. The nurses who treated her were not familiar with the need for suctioning a laryngectomee patient after administering saline solution to loosen the phlegm.
I beg all laryngectomees to take the time to educate their local emergency workers and to let them know where you live. It is difficult, if not impossible, to explain these things when an emergency takes place so please educate them before then. Write up something for them to quickly read in case they come to your house and are new on the job, as personnel changes happen frequently. Have your number and address flagged so that if you call and can't speak, they will know there is an emergency.
Please help to spread the word and knowledge concerning laryngectomy patients. Lives depend on it. Please email if you have any questions or suggestions on getting the word out.
In Memory of Nancy Ann Schilz.
9/14/45 to 1/19/06
For suggestions, contributions, corrections or questions about this section, please contact: