whispers on the web - february 2013 · 2013-01-31 · whispers on the web - february 2013 1/30/13...

1/30/13 4:09 PMWhispers on the Web - February 2013

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February 2013

Name Of Column Author Title Article TypeNews Views Pat Sanders Traveling/Membership News & EventsVoicePoints Carol Stach, MA, CCC-SLPBRS-S Swallowing after Laryngectomy Education-MedBetween Friends Donna McGary A Little Levity, Please CommentarySpeaking Out Members Dental Problems OpinionThis Lary Life Sandy Tocalino Cruisin' With The WebWhispers ExperienceTravel With Larys WW on the Celebrity Century Panama Canal Cruise PhotosThe Speechless Poet Len A Hynds A Forgetful Husband Prose & PoetryBits, Bytes & No Butts! Frank Klett The Java Chronicles Computers

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TravelingWhen we first discussed going on a 15 night cruise, I thought it would be too long, that we might get tired of it, maybe10 days would be enough. To my surprise, it was delightful. With a small group of 24, we bonded and became afamily. Others on shipboard started to recognize us as members of the same group and greeted us differently and ina friendly way. Amazing how many told me of a sister or a man down the street who had surgery like mine. We havea sampling of pictures but there will be more than enough photos and stories from this cruise to last a while.

We do have the regular 2013 cruise scheduled for a shorter one, 7 days, leaving from Port Canaveral on Oct 6. Goodprices and a beautiful ship, the Freedom of the Seas. Look at our cruise Index to get to any of our cruises:http://webwhispers.org/activities/ww-cruises.asp

MembershipWe have had problems with defining memberships ever since WebWhispers started and we gradually make changesto accommodate what you need from us as related to what we can offer. We have tried some things that workedbeautifully and some that just brought different problems.

One of the greatest puzzles is the person who joins, puts themselves immediately on vacation and never reads orwrites a single list email or contributes any advice and assistance to those who need it. We have no way of reachingthis person to let them know we are having an election or have ordered new brochures for distribution and cannoteven remind them that a few dollars would help us run the place. We would like to notify them when the conventionsare being held and that we have a WW dinner every year at the IAL.

We are starting a new list, in which we will send only a few messages and they will not be discussion topics butnotices of things we need to tell all of our members. Gradually, we expect to have all of our members on this Noticeslist who are not on the regular email distribution list or the Digest List receiving the Daily Whispers.

We have a new class of membership, also. Friends of WebWhispers and we will be happy to have people with us in acapacity other than the usual Patient and Caregiver, Medical, SLPs, and Vendors. They will also be on our NoticesList.

This appears to be a good step forward.

Enjoy,Pat W SandersWebWhispers President

http://webwhispers.org/activities/ww-cruises.asp




Swallowing After Total Laryngectomy

Carol Blossom Stach, MA, CCC-SLP, BRS-SMichael E. DeBakey VA Medical CenterHouston, Texas

Swallowing problems (dysphagia) can occur after total laryngectomy. The dysphagia may be temporary or long term.Risks of dysphagia include poor nutritional status, limitations in social situations and reduced quality of life.

The laryngectomy procedure involves complete surgical separation of the respiratory and gastrointestinal tracts. Forthis reason, the laryngectomized individual does not risk aspirating swallowed material. Instead, dysphagia followingtotal laryngectomy is mostly characterized by problems with propulsion of material through the “new” post-surgicalswallow passage (sometimes referred to as the neopharynx).

The nature and degree of surgical closure used with total laryngectomy is unique for each patient. As a result of thesurgical closure, some patients may end up with a fold of tissue (pseudoepiglottis) at the base of the tongue. Thepseudoepiglottis may form a pocket or pouch that can collect food or liquid, resulting in effortful swallowing when thepatient attempts to clear pocketed material. If the pouch is large enough, another surgical procedure might be neededto fix the problem. Effortful swallowing might also occur as a result of the overall tightness of the surgical closure.Patients require removal of different amounts of surrounding tissue during surgery. For patients requiring significanttissue removal, the surgical closure will need to be tighter and swallowing may subsequently require more effort. Insevere cases, the narrowed passage might result in backflow of swallowed material all the way up to the oral cavity ornasal passages. Liquids might be the only consistency the patient can swallow. Another outcome from surgery maybe the development of scar tissue which can create a stricture or significant narrowing in the swallow passage.Sometimes this problem can be temporarily relieved with stretching procedures (dilatation). This is only done underthe care of a physician. In some cases, a surgical procedure might be necessary to release the stricture.

Videofluoroscopic evaluation of swallowing conducted by a qualified speech pathologist is a critical component ofpost-laryngectomy rehabilitation. Not only does this dynamic radiographic procedure provide objective evidence



post-laryngectomy rehabilitation. Not only does this dynamic radiographic procedure provide objective evidenceregarding swallow function in this unique patient population, it affords the speech pathologist opportunities tointroduce compensatory interventions. For example, alternating food and liquid consistencies or swallowing multipletimes for each bite of food might be effective strategies for some patients. Patients experiencing backflow of materialmight benefit from using a head rotation to assist with opening up a narrowed area in the swallowing mechanism. It isonly during the swallow x-ray that these types of interventions can be evaluated for usefulness. Diet consistencyrecommendations and potential for other treatments can also be addressed during the evaluation.

For patients undergoing radiation treatment after total laryngectomy, another potential problem is lack of saliva(xerostomia) which can greatly impact oral manipulation and propulsion of food. Diminished sense of smell is alsovery common after total laryngectomy since transnasal airflow has been removed as a result of the surgery. Thesefactors can impact appetite and result in reduced food intake and poor nutritional status during a time when optimalnutrition is necessary.

For speech pathologists, it is critical to discuss potential for dysphagia during the pre-operative counseling sessionahead of total laryngectomy. Speech pathologists must also advocate for the videofluoroscopic evaluation ofswallowing post-operatively when indicated. For patients, close attention to the act of swallowing is crucial for relayingany new or persistent problems related to ingestion of food and liquid (including weight loss) to the appropriate healthcare professional so that appropriate evaluation and interventions can be initiated as soon as possible.

A Little Levity, Please!



Those of us of a certain age grew up reading Reader’s Digest. I suspect it is no the longer the staple of Americanhomes the way it was back in the 40s, 50s and 60, but it is still enjoys a huge worldwide audience.

As a child I was a voracious reader so I also discovered that treasure trove early on. Initially I liked the humorcolumns best. Life in These United States, which I always suspected some people made up just to get the $25.00and see their name in print. Laughter is the Best Medicine was usually pretty good but I didn’t always get it; the samewith Humor in Uniform. My Most Memorable Character was iffy for me at first but I was a sucker for those long storiesat the back of the magazine if they dealt with either of the two biggies : children dying of cancer, usually leukemia,and daring escapes from Communist countries especially East Germany. I was a child of my times. I was afraid ofCommunists and Cancer. And both were spoken of and written about with a Capital C.

Interestingly enough I have somehow managed to outlive both threats! The Berlin Wall, focus of so many of thoseharrowing escape tales fell in November of 1989 and childhood leukemia has gone from nearly always being fatal tohaving a 75% cure rate, one of the highest for all cancers. I got cancer as an adult in the 21st century when we havean amazing arsenal of weapons at our disposal for cancer and the threat of communism has changed into the fear ofterrorism.

So it was with nostalgia I thought of those humorous columns the other day when a dear friend recounted howeveryone from neighbors to police to medics came running when he felt a bit ill the other night and pushed his life-linebutton. He is fine now, waiting back on some test results, but it reminded me of a story I could submit to Reader’sDigest and get my $25 and name in print and this is the god’s honest truth.

My grandmother was a feisty lady and I loved her dearly although she was quite difficult at times. She had moved intoan Assisted Living apartment and wore one of those Life-Line buttons as part of their protocol in case a resident fellor was otherwise incapacitated. Well, Grammie decided one evening that her hair needed washing so she used herwalker to get to the bathroom sink. You also need to know that Grammie had one leg amputated and had aprosthesis that she named Pete but that is another story altogether. So Grammie wrangled herself over to thebathroom sink, removed her blouse and tucked her Life-Line button in between her bosom and proceeded to washher hair. Well, as you might expect the button was activated and the aides came running only to find her with a toweland an indignant attitude. She went back to rinsing and the alarm went off again and this time the culprit wasdiscovered ; it was Grammie’s buxom bosom! She was very proud of that incident and recounted it many times. Sheactually went into hospice twice and was sent home both times before she died at age 95 and we always said shetook great pleasure in the drama of it all. She was something else!

Now, I have a 4 year old grand-daughter and I hope someday she will tell tall tales about me. She has only known myEL voice but is pretty good at reading my lips since I can’t use the Servox if I don’t have a free hand. The other day Ihad some stomach gas and it came up just as I was trying to ask her something and it allowed me a few words ofinadvertent Esophageal Speech. I thought I sounded pretty cool since I had some intonation.

Kay was horrified! Her little face was big-eyed and shocked. She grabbed for my EL and cried out, “Nanny, are youokay? What is wrong with your voice? Here, use this. Use your good voice. Nanny, don’t do that again. You soundedweird.”

I didn’t know whether to laugh or cry. Maybe someday advances in technology and medicine will allow me other voiceoptions and perhaps Kayleigh will look back on my Servox EL voice with nostalgia. In the meantime I should submitan anecdote or two to Reader’s Digest myself!



DENTAL PROBLEMSPlease share any problems you may have had with procedure and/or cost.

Len A.Hynds, Ashford, Kent, England

I consider that there are two main problems for Laryngectomees undergoing dental treatment. Firstly if teeth arebeing removed, ( As they usually are because of our generally mature age), and a denture fitted, speech is usuallydistorted until one becomes used to the new configuration, and the movement of the tongue upon which speechdepends, becomes acclimatised and gives very slightly different muscle movements to give a clear sound.

The second problem, and much more serious one, is that the removal of teeth exposes the blood stream to all sortsof toxic infections, which could affect the thickness of the blood, but also create a loss of oxygen in the blood.

Twenty years ago at Guys Hospital in London, the surgeon just the day before an operation, refused to operate until Ihad an infected tooth removed, and he was doing a single heart by-pass, and fitting American metallic aortic, andmitral valves in the heart, where the thickness of the blood must always be exactly right, and the loss of oxygen in theblood stream could be serious, to put it mildly. A very important subject. At a recent dental appointment with aPersian ( Iranian) dentist, just last month, he said that they were required to carry oxygen, but he queried where heshould put the mask, as he had never thought of that problem before. When told, he ordered a throat mask.

The National Health Service in the UK is free to all, with the exception of dentistry, where a charge is made, althoughaged people or those on benefits of some kind it is all free.

Dave Aitchison, Canada/South Texas - April, 2012

As a young man I had a lot of dental work. Not sure why, as I followed good dental hygiene, but, such is life. A dentistis part of the Cancer Clinic where I go. Before radiation treatments the dentist pulled one molar as she said it would

need a root canal to repair and there was not time. Following radiation treatment she identified a number of issuesthat she felt needed addressed. I am Canadian with no dental insurance. We are fortunate enough to spend ourwinters in South Texas, about 10 miles from Mexico and have had all our dental work done in Mexico since I retiredso told her I would wait and have my issues dealt with there. Saw our dentist in Mexico and he suggested 5 crowns



so told her I would wait and have my issues dealt with there. Saw our dentist in Mexico and he suggested 5 crownsas the fillings were loose and underlying teeth were decaying. The work was done at about 10% the cost of the samework in Canada. I am very happy with the results. I see the Cancer Clinic dentist every 6 months for a check up. Thecost of this check up is covered by our provincial health care plan but any further work is at my cost. I will continuehaving my teeth cleaned in Mexico twice a year.

Following radiation my Canadian dentist recommended I use two separate tooth pastes, Fluoridex Daily Defense (1.1%, 5000 ppm sodium fluoride) in the morning and X-Pur Tooth Revitalization paste (5% NovaMin, calcium sodiumphosphosilica) an hour before bed then use a fluoride tray with 1.1% NaF Gel for 5 minutes just before bed. Hopefullyit will help stop further dental issues. The tooth pastes are more expensive than normal pastes but in the wholescheme of things, a reasonably insignificant cost. My saliva production has improved considerably so apparently thatwill assist also.

Happy to answer any questions and wishing all good luck.

Dan Franchi

Six months after radiation my front tooth broke in half. Dentist said it was caused by the radiation making teeth brittle.Cost $880. How careful can we be when eating ??

Linda Addis-Hinske, Cleveland Lost Chord Club East, Cleveland, Ohio

My surgery was over 15 years ago, October 14, 1997. I thought I had asked all the right questions regarding mysurgery and the radiation treatments I would receive before my surgery. I was really prepared for the laryngectomysurgery but never thought once about my teeth.

I completed 9 weeks of radiation and three months later had the total laryngectomy. Everything was going pretty welland for a long time no problems until I noticed my teeth getting weaker, chipping easily and frequent cavities.

I went to my regular dentist, but was unsatisfied with him as he really didn't know too much about side effects ofradiation so I found a dentist who deals with cancer and oral cancer patients. The first thing he asked me if I was on afluoride treatment plan. I was NOT. My previous dentist never put me on one before my radiation treatment. Had Ibeen on this treatment plan beforehand it probably would have saved my teeth longer than what it did.

My advise to any who are about to undergo this surgery with radiation and/or who already has had thesurgery/radiation is to go to your dentist and ask for a fluoride treatment plan. They will fit you for a silicone denturethat fits right over your teeth, that you fill with a little fluoride and wear for a few hours a day. Follow up 'check up'appointments are another plus as well as good dental hygeine. If you noticed something different with your teeth,cavity, pain, chipping, etc. seek a dentist as soon as possible. Don't wait.Good luck to everyone.

Ginny Huffman, Atlantic Beach, FL

I have been dealing with dental issues since my radiation in 2005. I had very strong teeth and couldn't recall my last

cavity. My dentist provided me with a mold of my teeth containing fluoride treatments but halfway through radiation, Ihad way too much discomfort to worry about my teeth. I was on a g-tube and struggling to retain my weight.

When my teeth began to chip away, I asked for implants. The oral surgeon obtained my field of radiation file from theradiologist and would not proceed without hyperbaric treatments. His concern was that I might not heal from the



radiologist and would not proceed without hyperbaric treatments. His concern was that I might not heal from theextractions with resultant infection and possible jaw bone loss. If you are at all claustrophobic as many COPD folkslike me are, the hyperbaric treatments were impossible. Because of my stoma, it involved a hood and a tube to mystoma while seated for 45 minutes in a very small submarine-like chamber. I didn't last beyond the hood!

Over the years, I have made do with four root canals, five crowns, many fillings and a temporary bridge that wascemented in and could be removed for cleaning. By 2012, the tooth attached to the bridge resembled rubber and wasabout to go. Fortunately, my dentist told me of new research that supports surgery without the treatments. Anotheroral surgeon, using the same original radiology report, operated and I have four implants. Like most medicalprocedures, it is a longer process than I assumed. It took six months from surgery to the actual permanent implants.

I would have preferred the surgery years ago when I needed only two implants instead of four. AARP dentalinsurance through United Health covered a small portion of the bill which was over $10,000. It is important to conferwith your dentist and radiologist and to investigate possible advances in dentistry. I'm glad my dentist was aware ofthe latest options.

Jim Maloney

Never had really good teeth! Was born in the depression.....In Combat in Korea, was a little waif of a lad cared by thevsiting Army Dentist--- foot treading the pedal for the DRILL! Clunk a clunk it went.

When Lary came... tooth by tooth L O S T.... first surprise after my Radiation/Chemo was aboard a CRUISE Ship-while dining... two small bottom teeth snapped off whilst eating. The rest is history and finally all mah toofies went!NO question my Cancer Life Saving treatment done took 'em off to the Tooth fairy.

OUR expense.. not a penny covered at all.

(Editor's note: A treadle is a part of a machine which is operated by the foot to produce reciprocating or rotary motionin a machine such as a weaving loom (reciprocating) or grinder (rotary). Treadles can also be used to power waterpumps (as in the treadle pump), or to turn wood lathes (as in the pole lathe). In the past, treadles have been used topower a range of machines including sewing machines, looms, wood saws, cylinder phonographs and metal lathes.)



Cruisin' With The WebwhispersSandy Tocalino

First cruise - yikes! First cruise with Webwhispers - yikers! I had no idea what to expect on either front. By late DecemberI started getting a bit anxious, but also looking forward to this great adventure.

The cruise surpassed any expectations I could have possibly had. Both from ship life to the excursion and the PanamaCanal. Looking at the canal and realizing it has been operating for 99 years is just awe inspiring. The engineering at thetime it was built was sheer genius.

The first evening at sea was my introduction to the Webwhispers. To be honest I don't remember too much from theevening. The group had 3 tables of 8 and Pat and I were the singles. As I arrived for dinner the second evening Patbeckoned me to sit at her table because there was the single chair. Oh Lordy! I was so nervous but I sat down and didwhat I do best: talk. We rotated tables most evenings which allowed for meeting and getting to know most everyone.

It was the best opportunity I have had in a very long time. I had to get to know the folks and I had to learn to listen as thesounds were new. Then I had to hear. After a few nights it was no longer an issue for me. The conversations just flowedand I was not afraid to say "Could you repeat that?" or even the uncouth "What." The background noise of the diningroom and my not hearing well (one too many rock n roll concerts) didn't help. However, none of that really mattered. Wehad such great fun over the two weeks of cruising! Lots of laughter, lots of teasing and, for me, lots of learning. I havemade such good friends and we have so much in common sans the laryngectomee.

This was such a learning experience for me. This group is proof that you can do anything you set your mind to. The folks Igot to know are livin' life. There is no complaining, "what if"s or "poor me"s. It is a group of people I want to be around anddo things with.

I have come home inspired to spread the word in my community about this fabulous organization. My knitting group hasalready had to listen to me share about my new friends. I have encouraged them to help me knit stoma covers. Well,maybe encourage is not the correct word! It probably came out as "We can make stoma covers out of left over yarn." I'malso looking forward to getting the brochures into our community here in the San Gabriel Valley (Pasadena, California andsuburbs). We have a huge cancer facility nearby called City of Hope. It is well known in this area for cutting-edge cancertreatments. I have a contact there and look forward to taking brochures to them.

See you on the forum.

(Editor's note. Sandy came back from the cruise, joined WebWhispers in the new Friends of WebWhispers and we aredelighted to have her with us.)

Casual pics taken during the Panama Canal Cruise. We do not have all of our people in here.There will be more posted later at another place on our site.

1. Gail & Harry Jensby2. Diane Shulz & Ron Kniffin3. Judy Rustik & Penny Nichols

4. Rick Rivenbark & Nova Lacefield



4. Rick Rivenbark & Nova Lacefield5. Jack Henslee & Jeanette Thomas6. Ron K with view from the stern

7. Ed & Barb Chapman8. Dorothy & Tom Lennox9. Janine & Ron Mattoon

10. Ann & Susan Mathias11. Sandy Tocalino12. Don & Nancy Whipple



CELEBRITY CENTURYSAN DIEGO TO FT. LAUDERDALE BY WAY OF THE PANAMA CANAL

1. Short walk to Guatemala!2. Pacific into Panama Canal, headed under the big connecting bridge3. Crowds up on the jogging track, Deck 144. In the first lock, looking back at Pacific end of canal5. Colon, Panama - very colorful port6. Cartagena, Columbia - a huge city



A FORGETFUL HUSBAND I was married for 63 wonderful years before I lost my partner and as Valentine’s Day approaches I think of all thetimes that I forgot to sign the card that I had bought. Often it was not until presented with mine that I dashed into mybedroom to find the card and write something nice. I always wrote a rapid poem more or less in the Shakespearianstyle, which I knew Tilly loved. Quite ridiculous at our ages, but you know I always could see her, even in her eighties,as the beautiful young girl I married all those years ago.

So to all you forgetful husbands, a card means so much to the ladies. If you want to really astound her, here is a short

poem you could add and claim as your own!

My dear if I could only tell thee,those imprisoned words, I want to say.But my throat alas confines me,read the message in my eyes I pray.…………………………………………..How can I speak of love with no soft voice.How can I tell, just how my heart yearns.



How can I tell, just how my heart yearns.I must love from afar, I have no choice,but with a passions desire that fiercely burns.……………………………………………..

I cannot speak yet of my hearts desire,Just read my sad eyes, so full of fire.………………………………………………

I had better stop there friends, before this paper starts smouldering.!!!

The Java Chronicles

We are into a new year and this is a great time to ensure your PC or Mac is as safe as can be for the World WideWeb.

Do you use Java?Java has been in the news quite a bit lately since security concerns have been brought to light. Java is a programthat allows a program to work with programs and websites that have been developed with Java.

On January 15th, 2013 Oracle has issued an update to address those concerns. You can update your system atFilehippo to get the latest version of Java.

To update you Windows 32 bit system:http://www.filehippo.com/download_jre_32/or for 64 bit systemshttp://www.filehippo.com/download_jre_64/

The Department of Homeland Security has even chimed in by recommending all PC users disable Java. You can dothis if you are certain you will not need it for your favorite websites. Some popular sites that require Java are EASports Pogo, and our own Chat room on Delphi Forums.

The below article was reported by NPR: Disable Java 7http://tinyurl.com/a5h7v3aA second opinion on CNET:Still advises disablinghttp://tinyurl.com/bfye7sv

Uninstalling Java

http://www.filehippo.com/download_jre_32/

http://www.filehippo.com/download_jre_64/

http://tinyurl.com/a5h7v3a

http://tinyurl.com/bfye7sv



Uninstalling JavaIn Control Panel, go to Add/Remove Programs (Windows XP) or Programs and Features (Windows 7).

Control Panel Programs list showing JavaLook for lines titled "Java", "Java VM", "Java Update" and the like, all with the Java logo as an icon.Right-click on each, and select Uninstall.Once you're done, you've uninstalled Java.

Didn't find any Java items in the Programs list? Then you didn't have Java on your machine to begin with.Want to know what version of Java you have? Go to the link below:http://javatester.org

Added just before publcation: Recent reports on the Java "fix" which Oracle released on Jan 14th have stated that thefix has, in fact been compromised already. The link below gives a more detailed report of the current Java situation:http://www.technewsworld.com/edpick/77156.htmlTo cut to the bottom-line: At this point in time it is best to simply delete Java from your PC and wait until the team atOracle can safely provide us with a reliable and safe Java plug-in.

Evernote Update:Evernote has many features for users to share and explore in this article from Making Use Of.“Get Creative With Evernote: 10 Unique Uses You Haven’t Thought Of”http://tinyurl.com/behdtnw

Frank KlettNJ 06/08

WebWhispers is an Internet based support group. Please check our home page for information about theWebWhispers group, our email lists, membership, or officers.For newsletter questions, comments or contributions, please write to [email protected] Managing Editor - Pat Wertz Sanders Editor - Donna McGary

Disclaimer:

The information offered via WebWhispers is not intended as a substitute for professional medical help oradvice but is to be used only as an aid in understanding current medical knowledge. A physician shouldalways be consulted for any health problem or medical condition. The statements, comments, and/oropinions expressed in the articles in Whispers on the Web are those of the authors only and are not to beconstrued as those of the WebWhispers management, its general membership, or this newsletter's editorialstaff.

As a charitable organization, as described in IRS § 501(c)(3), the WebWhispers Nu-Voice Club

is eligible to receive tax-deductible contributions in accordance with IRS § 170.

http://javatester.org/

http://www.technewsworld.com/edpick/77156.html

http://tinyurl.com/behdtnw

http://webwhispers.org/index.asp




is eligible to receive tax-deductible contributions in accordance with IRS § 170.

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