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CAN I STILL SWIM AS A LARYNGECTOMEE?

 

LARKEL [no longer manufactured]

There is a device called a LARKEL (from Laryngectomee and Snorkel), which can be purchased with a doctor's prescription. The LARKEL is a rubber device - a breathing tube inside an inflatable cuff is inserted into the stoma and then inflated with an air syringe, forming a seal. You then clench the mouth piece with your teeth and breathe through your nose. Air then passes through the nose, down through the oral cavity, through the mouth piece, through the tube, into your stoma and finally to your lungs. Inhalation and exhalation, while wearing the LARKEL are through the nose. It has to be fitted correctly and you must have several training sessions by someone who is experienced in teaching how to use it

 

 


Federal law required that the LARKEL be provided on a doctor prescription basis only. Also, the law required the manufacturer to inform users of the possible dangers of improper use and to provide at least 2 training sessions, including a minimum of 3 hours dry-land and water instruction, in addition to physician consultation, LARKEL device fitting, and certificate of training.

 

 

NEW SWIMMING DEVICE

 

They are looking forward to starting sales of this suit in 2010 as soon as all legal aspects are settled.

 

 

For more information contact John Lubelski

website:  www.ltswim.com
Tel: (416) 312-2132

 

 

JUST PLAIN SWIMMING

 

Pat in water

Some of us go in pools and swim again, very carefully, by sealing the stoma and being sure to have the stoma above water level when it's time to breathe! I swam for the first time in over 4 years, and I did it one step at a time. I like to wear a mask that seals my nostrils and allows me to see clearly under the water. This is how I started swimming again.

Start slow. Shallow end of pool. Take a breath, seal your stoma with your thumb or finger while keeping a little air pressure against it blowing outward. Dip under the water past the stoma level. Stand up and breathe.

Repeat until you are comfortable and keep dipping a little deeper in the water. Next, push off to the side of the pool from 8-10 feet away. That way, you can know you will be able to grab the edge with your one free hand. Keep on going and next try across the width of the pool. Be sure it is shallow enough to stand up at any time and keep remembering to keep your hand at your throat till you are above water.

Whatever you do, be careful and stay safe. The only time I got water in my stoma was when I did not stop to think and removed my hand and breathed in too fast. I had a terrific coughing spell but that was all. Swimming with one hand is not as easy as swimming with two and you must pay attention to what you are doing. I always have someone in the pool with me.

One of our members, Elizabeth Finchem, has been swimming for years and is shown swimming in the "Move It or Lose It" videotape with it's primary emphasis on neck and shoulder exercises, from the Orange County Lost Cord Club. (Pat Wertz Sanders)

 

 

 

 

SWIMMING AT THE IAL ANNUAL MEETING

 

 

These laryngectomees at the 2006 Annual Meeting in Chicago did a demonstration of how they still can swim. The stars are Philiip Clemmons, Ian Milne and Robert Robinson.  Tony Talmich was there as a first timer.

 

VIDEO AT 2009 SAN MATEO OF SWIMMERS

http://www.youtube.com/watch?v=Ni1B0Aue3_0

 

OCCLUDING LARGE STOMA FOR SWIMMING

When summer comes everybody start thinking and finding a way to enjoy the swimming pool. As I have a very large stoma, that would be very difficult to occlude even with two fingers, I have found a way that I do recommend to all larys that want to enjoy a short swim. I occlude my stoma to speak or to swim with a hand exercise ball manufactured by Theraband. The company manufactures these balls in three different colors but I recommend the yellow which is the softest and molds around the stoma protecting the stoma from the water. Wish you all an enjoyable swimming. Web site: http://www.thera-band.com/order.html Call The Hygenic Corporation for a Dealer near you. In the U.S. or Canada, call: (800) 321-2135  (Jose Cruz)

 

WET TOWEL FOR SHOWERING OR SURFING

I have had the Larkel for 8 years now, but don't have as much confidence as I do with a wet bath towel wrapped around my neck, covering my stoma, and held securely by my hands. I use the wet towel when showering and also at the beach playing in the waves. I have full confidence when ducking under waves as long as I can stand up and have a secure hold on the towel. It is virtually impossible for any amount of water to enter the stoma. If a drop or two gets in your stoma, your natural system makes you cough it up. Anyway, that's my experience over many years. (Don Devendorf)

 

FLOAT TUBES

I live on the water (New Haven, CT) and I have a cottage on Cape Cod. My biggest loss as a lary is not being able to swim or being put in danger by walking on a shaky dock, or getting in

an unstable canoe or row boat. My wife and I tried to invent something larys could use to be comfortable on a lake or in the ocean. Something like a tube with a harness that would keep our stomas way out of the water, we went to Sports Authority to get ideas and there hanging on the wall in the fishing dept. was what we were trying to invent It was a tube covered in a tent-like fabric with a fabric seat like you would put a toddler in to put in a pool. As you step into it you can pull it up to your waist and walk into a lake or in my case the ocean. Once you walk in past your waist line you will float with your entire chest, neck, and head safely above the water. On the left and right sides of the tube are zippered pockets that can hold soda, beer, food, etc. Behind my head is another inflatable pillow that can be blown up or left flat. I love my tube and strongly recommend it to any one who wants to safely and nicely get back into the water. (Full story and photos in the July 2000 WebWhispers Journal. (Bob Herbst)

Float Tubes can usually be found in any good sporting goods store. Especially in an area with lakes. Get a pair of simple swim fins and you can really move out. I used to use one in Utah (Before Laryngectomy) and the only problem I had was trying to walk with fins and holding the tube up until I got into the water. Be careful using them around surf or heavy boat wakes. They are a trifle top heavy when loaded with a body. (Parnell Stratton)

I have been Fly Fishing in a float tube since the 70s. I have even fallen asleep in it while on the water. When I set in mine the actual tube is almost chest high. The majority of your weight is below the tube and it would be extremely difficult to tip it over. Possible, but you would have to be trying to tip it over. (Larry Evans)

I started bass fishing out of belly boats (tubes) over 40 years ago. I have spent many hours on the lakes and rivers in a tube. I just wanted everyone to realize that they can turn over.

You have to show a little caution when leaning over while in a tube. Also the snap that holds you can come loose or break so you should check the rigidity of the connection each time before you go in the water. Some people use swim fins to move around in the tube but I always preferred the foot paddles they make for them. You can buy a belly boat out of the Bass Pro Shops, online, for about $50.00. They also sell the foot paddles that go with the boat. The foot paddles are hinged and fold when you move your feet forward then engage to propel you through the water. I bought my son a belly boat and paddles from Bass Pro for Christmas. Personally, since I have become a Lary I won’t fish out of a belly boat, too dangerous. I prefer my BassTracker instead. (Bill Hathcock)

For photos of a many different types go to Cabelas. Type "Float Tubes" in Search or go to your favorite search engine to find other companies.

 

MUSTANG L.I.F.E. JACKET

BOATING AND SWIMMING


I can really identify with concerns about getting out on the water, but I hope I can put your minds at ease. I am a lifelong sailor and small boat person and I had my surgery at age 64.


I was fine until I read one of those books they give us when we are in the hospital that indicated that larys should never go on a boat much smaller than an ocean liner. The fear nagged and grew as I readied my 'fleet' of a 14' catboat, an 11' Boston Whaler and an 8' rowboat for the water. When the day finally came that my beloved 50 odd year old sailboat was launched I actually wished the launch day had been delayed - a real first for me!


But then the miracle happened. I had been praying for guidance and suddenly I found myself on the beach asking myself what the heck that fear had been about. I've been out in small boats all my life and never fallen overboard from any of them so why in the world should I start now! I got into my rowboat, went out to the catboat on her mooring, was VERY careful in going from one to the other and have honestly not worried about it since. I am careful, but I truly don't worry. So my advice to you would be to continue to do the things you love to do, be careful and ENJOY being alive. If you can work all of this into an excuse for getting someone else to mow the lawn more power to you, but I cover my stoma well and mow the lawn and paint with that nasty marine bottom paint and have had no ill effects.

AND that was the year before they came out with the L.I.F.T. vest. (Read the description of the L.I.F.T. below!)


Happy Sailing!

Elinor Ripley from Cape Cod

The L.I.F.T. life vest that I refer to is made by Mustang Survival in the state of Washington and I am still using the one that I bought several years ago. I have never had to pull the cord to inflate it, but it is a real comfort to have and is so (what's the opposite of bulky?) that I forget I have it on. The one I have can be manually inflated and I "blow it up" about 1/3 of the way with a pump and find that I can paddle around "swimming" on my back - which is better than nothing. I got my vest from Landfall Navigation and am sure you will find other sources if you search the Web. If there is still a choice between manual and automatic I'd recommend the manual so that you can partially inflate it for 'swimming'.

I tested my Mustang L.I.F.T. jacket when I first got it and found that it works just as advertised. It was a fairly windy day, and even with waves my stoma was at least 5 inches out of the water at all times. In fact, I was lifted so far out of the water that I had to partially deflate the vest to try a bit of "swimming".
More from Elinor Ripley from Cape Cod

 

QUALITY OF LIFE (with L.I.F.T.)

I've read a few emails on our list that talk about giving up boating after a laryngectomy. I have to put my two cents in about this subject. I have been boating for the past 35 years, and had my operation 8 years ago. I guess I've been very lucky because the only thing I have given up is yelling at my kids. It never even occurred to me to stop going out in my little sport cruiser. My wife and I take overnight cruises using the normal safety precautions we always take while on the boat. When I found out about the floatation device made to hold you higher in the water, I got one (it made my wife feel better).

There are some things it is absolutely necessary to give up, depending on your individual situation. But when the boating season comes along and you get that itch to be out on the water, think back to how many times you have fallen off your boat. And think about how much you want your "quality of life" impacted by your operation.

The L.I.F.T. Vest is made by Mustang Survival. It is available from Landfall Navigation http://www.landfallnavigation.com   The Model # is MD0450 Hydrostatic Automatic. The price is $200-300 (check on-line. It's high cost but well worth it). The vest comes with a full set of instructions and the website has all the information about the vest.
When it comes to boating, no matter what type, normal safety precautions, a good set of charts, a good VHF radio, a GPS and a seaworthy craft are the first prerequisite to a fun cruise.
Lou Holtman Poughkeepsie NY class of 2001

 

GET ATTENTION OR CALL YOUR DOG

I have been a laryngectomee for 8.5 years now and a few weeks ago I found a small flat plastic "boat whistle" while going through some boxes packed with old mementos. For some unknown reason, I put it to my lips and sort of puffed. Imagine my surprise when I heard a whistle noise. I tried a few more times just to make certain I could repeat the feat at will. I was further surprised and elated to have my dog "Bo" come to me from somewhere else in the house. He is 13 years old and quite deaf so I had been having trouble getting him to come to me with just esophageal voice commands. Now he responds to the whistle from distances as far as 250 feet. Anyway, since Dutch suggested I write about it, I have tried to figure out just how I manage to do it. As near as I can tell, I am using air trapped in my mouth and expelling it through puffs. Thus, I get no long ear-splitting blasts but very short "toots" that are sufficiently loud to draw attention. If you can puff out your cheeks while keeping your mouth closed, I'm sure you can manage the small reed-type whistle as an attention getter. Just remember that blowing the whistle has nothing to do with breathing so just continue to breathe normally while using the whistle.

 

POLICE WHISTLE WITH ADAPTER

For someone who spends a good bit of time out of doors in relatively desolate areas, or someone who is concerned about nighttime safety, a police whistle which has been modified

by the attachment of a nipple from a baby's bottle which has been cut off at the small end and placed over the mouth part of the whistle. The larger part of the nipple can then be placed over the stoma and blown for a loud, piercing signal, without concern about a dead battery or other power source.
(How to make cheap whistles for give-away ... see (Stoma Whistle)

 

PERSONAL ALARMS

Since laryngectomees have a hard time making a loud noise, in the event of a real emergency, there are personal alarms suggested by one of our WW members. These are in all price ranges, many under $10 and are available from a number of sites that sell security equipment. You can go to Google.com and search for them under Personal Alarms.

To give you one example, Tbo-Tech has key chain alarms, purse size flashlight/alarm, and an electronic whistle key chain, in addition to the dual purpose alarm that can be hung on a doorknob or carried. Please note, these are ear screeching alarms for emergency use. Select something not so powerful if you want to call the grandkids or the dogs.

 

ANOTHER WAY TO CALL FOR HELP

Another solution is an aerosol air horn. You can buy these where sporting and boating supplies are sold. It is just an aerosol can of compressed air with a horn attachment on top. You have undoubtedly heard these at football games. They are VERY loud.

 

WW MEMBER RETURNS TO RADIO AFTER SURGERY!!

WW Member Dennis Leo, born in 1949, lives in Kurri Kurri, New South Wales, Australia. Dennis was working as a radio announcer when diagnosed with larynx cancer in 2004. Non-

surgical treatments ultimately failed, so Dennis underwent a laryngectomy in October of 2004 and acquired an indwelling TEP/prosthesis two weeks later. Encouraged by his ENT, Dennis returned to broadcasting in early 2005 on CHRFM 96.5 in Hunter Valley, NSW, starting a new program called "Sunday by Request" on February 6, 2005 from 6:00 PM to 8:00 PM. This is a talkback, request-type show that attracts a lot of callers. Dennis has also augmented his TEP/prosthesis with a Blom-Singer HandsFree device. WW has managed to obtain a short (1 1/2 minute) audio file from this show so that you can listen to Dennis "on air"both his "old" and his "new" voices!! This is a 4 MB .wav file .. (it takes a while to load, but is worth it).

 

BICYCLE & MOTORCYCLE RIDING

1. I was concerned about riding my Motorcycle, but it isn’t a problem. I carry a small bag with my laryngectomy needs, a canister of water, and then it’s the freedom of the road. I carry an extra TEP and a mirror. Your life isn’t over, so get out and enjoy it.
John Day [Class of 2006]

2. I have been a lary for one year and communicate with esophageal speech. I also am an avid cyclist and have ridden for over 30 years. The biggest adjustment for me has been the wearing of a stoma scarf for protection. The scarf restricts inhalation when I am climbing or stressing myself on the flats. It sort of gets sucked in and in this colder weather the additional clothing is sometimes a real problem. I have tried riding without the scarf but that worsens the problem as the clothing blocks air movement. I wouldn't even suggest the use of the foam pad as this really restricts my breathing. I have completed mountain bike races of 7 miles and mnt bike time trials of 5 miles. I have completed 30 and 40 mile rides. In all cases the blocking of the airway caused me to fiddle with my clothing to breath better. Another problem is the accumulation of fluid or sputum after riding. This I found to be difficult to clear and results in my voice being really muffled. Takes a while to clear that. Another web member suggested the use of lemon in water and this does help to clear the passage quickly. By the way, I celebrate one year today and I currently ride about 100 miles a week and I have joined a running club.
Tim S.  [2008]

3. There are two suggestions from athletic laryngectomees that I recall. One fellow was a marathon runner, Tom Brewer, who devised his own plastic guard to wear over his stoma to keep his tee shirt from being sucked into the stoma as he ran and the fabric got pretty wet. He cut a corner off of a plastic milk jug and punched enough holes in it with a paper punch to allow him to breathe freely and attach two ties on the sides of the piece.


The other suggestion is a product that has been around for ages. It is a plastic frame that is convex, and the center is "T" shaped to hold a foam filter and keep it away from the stoma opening so the fabric of shirts. Scarves or other clothing doesn't get sucked into the stoma. The frame and foam filter combo is made by Cardinal Manufacturing, Inc. It's called the E-Z Breathe Filter. Their contact info is in Self Help for the Laryngectomee...at least it is in my old edition. You may find this company on the WW or IAL website lists of vendors and products also.
Elizabeth Finchem, Tucson, AZ [10/78]

4. Luminaud bought out Cardinal several years ago so if anyone still carries it would be them.
Jack Henslee, [ ‘79, ‘88, & ‘95]

5. Maybe you have tried them already and are unable to wear one, but my first choice would be the HME filter system. I use the ATOS Provox brand and they have a "HI-FLOW" filter that is specifically designed to be worn during periods of increased physical exercise/exertion. They also have a "NORMAL" filter that has a higher resistance and makes it more difficult to breath and is to be used during periods of resting/normal breathing. I use the "NORMAL" one when I am physically exerting myself, because it makes my lungs work harder and results in better breathing capacity.


InHealth also makes a HME system. Either one would be great for riding a bicycle, I think. No problem with it getting sucked into the stoma, and it completely seals the stoma so no worries about insects, etc. flying into the stoma while cycling.
C. Bruce "Buck" Martin


6. I would try a Stoma shower cover (BIB) under your Stoma cover or bib. This would keep the airway open and the bib would keep the wind and what ever out while you ride your bicycle also. It’s ready made and all you have to do is order one from a vendor and I believe it will solve your problem also.
Terence Gaffney, NJ

7. I use my bike bell when passing people since I can’t announce “passing on your left” like most other bikers do.
Vicki Metz [Class of ‘96]

 

 

SOME MORE CONVERSATIONS ABOUT WHAT WE ARE DOING

 

Harley for my Birthday

 

Well, I went and got myself some new and interesting problems and opportunities. For my 66th Birthday. I finally bought myself a crotch rocket and yesterday passed the NYS road test. Talk about life after cancer. For a guy who hates stoma covers, you certainly need one on a bike and some spares to boot. Both hands are occupied all the time and a helmet adds to lack of access so you cough into whatever is there. Very different from my bicycle. My state requires a helmet and for now I prefer the full face because it's cold. No access to the stoma even at a red light. I so love the excitement however that a messy neck is really not bad. This new experience is only a few days old. I'll continue to update y'all as I learn. Maybe we can get a bike club going. Is anyone else out there a biker? (Oleguy)

 

Dear Oleguy,

Congrats on the Harley. I don't ride one of those, but I do drive a Miata with the top down whenever its not raining too hard. If you drive fast enough the rain blows past. There are two or three activities I do that don't lend themselves to normal coughing, or a hands free valve - which I love. When I ride my bicycle I remove the hands free valve and stick it in my pocket. I don't use a stoma cover ( I tried, but it interfered with my breathing) but I do wear a filter. Snow skiing is another activity that doesn't fit the norm. I am somewhat of a novice, having been once, three days of skiing until I broke my shoulder, but I'm going back again this winter.

Maybe we should have a listing of hobbies and activities that we all do. This would let folks know that a laryngectomy is not the end of the world. Oleguy rides a Harley; Scotty runs a big rig; I fly a hot air balloon, snow ski, and bicycle. That's not a bad start.

Philip Clemmons

 

Q & A from the List - Helmet

It`s time again to get the bike out but, even after 3 years, the helmet strap irritates my neck. It makes me have a coughing fit for a good 15 min. I tried using a quick snap but as soon as the strap touches the right side of my neck....bingo there i go. I was wondering if some of the other riders have any ideas?
Eric

There are helmets out there with chin straps. Police applications come to mind. Some states don't require helmets, so check your state's laws should you decide to ride without one (I have many times, but now live in VA, which requires one). Do you now use a windshield too? I have had to install one.
Keep the rubber side down!
Mike A

The chin type strap that was recommended sounds like a potential solution. But, I am curious about why it is causing issues. My strap really doesn't touch my neck much at all. I have it adjusted so I can put my finger between it and my neck and there is never any pressure on my neck from it. Plus the strap is located quite a bit higher than my stoma.
You might go down to a bike shop, try a few different ones on and see if you can find one that works - or a chin strap that does. You do have a windshield - don't you?? Without one, you could have wind blowing the helmet back, thereby causing the strap to 'get on' your neck. I can see where that could cause problems, but I wouldn't ride a bike without a windshield anyway, as getting windblown stuff in your stoma at speed would not be a good thing to have happen - at all!!
Lanny Keithley

 

Hunting

I still like to dove hunt, and shoot at paper and a few cormorants (that water turkey here in the South, they love to eat catfish fingerlings) still do a little woodwork. Load all of ammo for my shooting activities. (Charles)

 

Snow Ski - Ice Skate

I snow ski about 35 days a year; boat and fish Chesapeake Bay (water ski with kids..but I haven't tried the actual skiing yet...need to learn a dry landing); ice skating on Bay tributaries, road running (only 5-8k races so far, but building up some stamina this season); and now maybe back to the motorcycle. Whew...just typing all that made me tired. (Otter)

 

CHARGING BATTERIES ON THE ROAD

When out camping or away from home, you may need a way to charge your batteries out of your vehicle.

I am an Electrical Engineer so I will try and explain what you need in layman's terms. When you plug your charger into a wall outlet you get 110 volts of AC (Alternating Current) at 60 cycle with about 3.5 to 4 watts of power in and 9 volts of DC (Direct Current) out at about 15 MA (Milliamps) .3 to.5 VA (volt Amps) out. You will notice I said 'about' as not all chargers deliver the same amount of output power, these are about the average you will find for 9 volt chargers.

What does all this jargon mean to you, since all you want to do is charge your batteries in the woods. All vehicles have a 12 volt DC system so we have the DC voltage already. We now need to get it to 9 volts to sock it to your batteries. Any reliable electronics shop (Radio Shack) will carry a charger with a cigarette lighter on one end and the fitting for a 9 volt battery on the other and off you go into the woods all set to charge. Prices will vary when features are included such as over charge protection or trickle charge features. It is like anything else, you get what you pay for.

Hope this helps, stay out of the poison ivy, don't step in any fire ants and don't use nettles to wipe your butt!!!!  (Ron Gillette)

 

CHARGER

1. Siemens also offers a 12 volt charger with power cord. Just plug it into the cigarette lighter and you can charge your Servox batteries from your vehicle. (Lenny Komar)

2. A charger that we use is a Tripp-Lite Power Verter, Ultra Compact Inverter, 150 Volts, from Batteries Plus. It plugs into the cigarette lighter. It has a three pronged outlet (I believe you can also get one with two outlets). Use for your Servox Charger or anything else you need to charge (camera) or you can run items like a coffee maker. How about a TV--(kidding).
(Vicki Metz, class of '96)

 

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