How We Live

 

 

keep active

 

A little of everything

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)

 

 

alarms - bells - whistles

 

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.

 

BICYCLE & MOTORCYCLE RIDING

 

Notes about 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]

 

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

 

Got my youth back!

I hung my Skis up 10 years ago. However 2 weeks ago whilst in the north of Norway visiting my son he wanted me to Ski with him, so I borrowed a friend,s skis and off we went, had a
great time and I was just as good as I was 10 years ago.

Yesterday Me, My Wife, and 2 truck driver friends (Polish and Danish) spent the day skiing and I will ski again soon with 2 mates and have now made plans for the end of the month.

Its very expensive in Norway but its a thrilling game downhill skiing, I was apprehensive about skiing again as its been so long plus this laryngectomy crap in my neck but this recent activity has given me a boost to my morale and as a lary made me feel extra good being able to shine at the sport without anyone around me even knowing I had this disability. When I ski not only
am I one of the oldest there but also the only lary there.

English Alan living in Norway . Laryngectomee since Feb 2010.

 

Never too late

Your story about returning to your passion for skiing reminded me of my decision to learn to ski instead of just watching others enjoy the slopes from the lounge with those who go to the Ski Park just to have a meal or a drink. I signed up for lessons and bought my equipment. That was 10 years after my laryngectomy in Mt Shasta, CA. The first couple of lessons were a stretch for me physically. I soon learned to tone up the muscles and core that were screaming at me. My local friends and I began to ski together when I was good enough to spend the day on the slopes. When the snow conditions are just right it is like "surf's up!" is in S CA.

While I was still gaining confidence on my own I took a wrong turn to the left on the trails and discovered I had chosen a steep slope that was marked off for the slalom training for the Olympic skiers. They panicked when they saw me hydroplaning down toward them. I did great until I landed safely in a deep snow bank at the bottom. A friend who was behind me saw what I did and followed me to my landing place. We laughed 'til we cried. It was truly one of the most fun moments of my life! I'll never forget that day. I surprised everybody, even myself, that I could manage on skies that well. A confidence builder that assures you that you can do almost anything if you give it an honest try.

Elizabeth Finchem, Tucson, AZ 10/78

 

Brings a smile and a memory

While living in Denver in the mid 90's, our entire family (and 2 others) all made the trip from Denver to Breckenridge where we set out for a fun filled day of skiing. With skis in hand, I followed my son and a friend of his to a particular lift and while in line, he turned and asked me did I realize I was going to be coming down a black diamond slope and I waved my hand like it was no problem. My teenage son and his friend had spent 2 years on those slopes and he had gotten quite good on a snowboard...I, on the other hand, had never snow skiied before.

Up the lift we went and at the top of the mountain we all jumped off....my son and his friend took off down the mountain on their snowboards, and I was left to figure out what in the world I was going to do. I have to admit it was the most difficult task I ever completed, only because I was not yet ready for that type of slope. Needless to say, I am alive today to talk about it...so that is proof I survived, but it was a long process going down hard several times, losing skis on numerous occasions, but I survived. Then I educated myself on the various kinds of slopes and it wasn't long before I actually got down that original hill without falling after learning how to ski.

It is actually on my bucket list for us to go back to Breckenridge for a ski trip. As time goes on, I am finding there is very little I can't do that I could do before my surgery. Life is good!

Mike Smith 2008

 

CHARGING BATTERIES ON THE ROAD

 

CAMPING

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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