June 2015

 


 

 

Name Of Column Author Title Article Type
News Views Pat Sanders Musing over Mucus News & Events
VoicePoints Brienne Ruel, M.A., CCC-SLP First-time Placement of TE prosthesis Education-Med
Between Friends Donna McGary A Sad Sweet Smile Commentary
Speaking Out Members Retirement Opinion
Dear Lary Noirin Sheahan Conversation Gaps: To Fill or Not to Fill? Commentary
The Speechless Poet Len A Hynds Brothers Prose & Poetry
Bits, Bytes & No Butts! Frank Klett What's New? Windows 10 and Apple Notes Computers
Editor's Mailbox Dutch from HeadLines 2004 Friendship!  

 

 

INDEX AND LINKS TO EACH ISSUE MAY BE FOUND AT: http://webwhispers.org/news/WotWIndex.asp

COMMENT HERE
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Musing over Mucus

 

The most common everyday type complaint we hear about is Mucus.

Mucus may be:
discolored (sign of infection),
thickened (need water or mucus thinner),
crusted (air too dry - humidify)
but the one that has come back to plague me after all of these year is the thin, clear, watery mucus that requires clearing out the stoma constantly. Talking is difficult when you almost blow bubbles and it just won’t stop. If I talk a lot, it gradually clears up but inevitably when I get a call, I will have been sitting here at the computer, not noticing when the telephone rings and I answer sounding like I have my head under water.

It can be helped by antihistamines but with my sensitivity to anti-histamines, I just need to sleep all day when I take them. Years ago, I took the new non-drowsy ones and they didn’t work well that I could tell. They dulled my senses.

Recently, I went to a new ENT who specializes in vertigo and he had some things to try for that. At the same time as he gave me 2 shots, 7 days of meds for that, a prescription to take at bedtime, he told me also to take a Claritin every morning. He had commented when he looked in my nose that there was a little swelling. A week later, I finished the script and thought I am not sneezing, clearing my stoma and my voice was clearer without being terribly dry, but was still sleepy, so I started experimenting with a lesser quantity of the Claritin. These were the regular 10 mg tablet taken about breakfast time so I cut them in half. It still helps but I am also still sleepy…

I decided to see what I could find on the Internet and one natural way suggested was warmed lemon juice with a little honey. That reminds me of when I was a child and my dad suggested to anyone with a sniff or sneeze, a hot drink of the lemon/honey combination with an added splash of whiskey. I’m sure each ingredient had it’s purpose. Seriously, I have lemon tea on the shelf. I know that hot drinks do help and I believe the lemon does cut through the mucus. I need to get the lemon tea out on the counter and have some of that instead of steady coffee!

Another natural help, especially if the sinuses are dripping, is flushing the nostrils out with warm salt water. (like out saline solution, it helps cut the mucus.) Some of our people use the neti pots for clearing the sinuses. I have in the past used warm water with a little salt but that is when the sinuses need clearing.

Don’t get carried away with trying to get rid of mucus. You need it and it is normal to have it and a scary thought… the respiratory tract produces several litres of mucus a day and is composed mostly of water, carbs, proteins and lipids. This is not waste material, but it does help to trap some of the dust and dirt we inhale.

Mucus also has some natural antibiotics. So being rid of mucus is endangering you with dry tissues that crack and bleed, and nothing to help you keep your tissues healthy. I don’t want to get rid of it and maybe the lemon tea would be good to wash the excess down into the stomach. On the other hand, it also is a bit acidic for my stomach.

I think I will keep on with the Claritin at least through the allergy summer season! Of course, what about the leaf mold this fall? I’ll worry about that when the leaves start turning. When you have allergies, it seems to be seasonal... all seasons!

 

Enjoy,
Pat W Sanders
WebWhispers President

 

 

 


 

Best Practice in Management of First-time Placement of TE voice prosthesis


Restoring speech communication using a voice prosthesis (TEP) is a remarkable advancement. The moment a patient attempts the ‘new’ tracheo-esophageal voice and is able to create sound again is joyful and relieving. Then, a memorable moment is savored when they shape that new sound into words, such as “I love you” or “hello” to the family members in the room. While recovering from such extensive surgical procedures combined with the lingering concern for disease recurrence, these are the moments patients and their families can look forward to as rehabilitation begins. In addition to the feeling of hope, there are also challenges to address, as the focus becomes achieving successful communication at a level of independence appropriate for each patient. Patient education is a significant component for any surgical procedure. For laryngectomees this is imperative both pre- and post-operatively, and ideally, in tailored increments to allow for adequate acquisition and processing. Literature reports vary widely as to how many patients were aware of all the outcomes and what they understood. Even as recently as 2006, 20% of patients were not made aware of the fact that they would not be able to produce voice after surgery.


Moreover, patients were not informed about the need for continued speech rehabilitation and communication options post-operatively. Pre-operative counseling sessions with the patient and family are paramount to clarify a variety of aspects in what to expect, but just as important is continuing similar counseling post-operatively as the patient may feel overwhelmed or be unsure what to expect regarding communication restoration. At the UW Voice & Swallow Clinics, patients attend an education session and are provided with written guidelines prior to their tracheoesophageal puncture procedure to review expectations regarding the procedure itself, managing the red-rubber catheter the first week, prosthesis care, TEP replacement timeline and long-term financial responsibility of laryngectomy supplies.


There are a few steps to take as you are making decisions during that first visit following a tracheoesophageal puncture and initial TEP voice prosthesis placement.


Start with a Non-indwelling voice prosthesis.


At the UW Voice & Swallow Clinics, every patient who is newly laryngectomized and been deemed a candidate for voice prosthesis is fit with a low pressure (non-indwelling, NID) voice prosthesis at their first visit following their TE puncture. The reasons for this include:
1. Ease of placement: healing tissue of the tract, the NID TEP is constructed of a more pliable material and using a smaller diameter, such as 16 Fr, can minimize tissue disruption and reduce time spent and patient discomfort dilating the tract up to 20Fr or 22 Fr in clinic.

2. Cost effectiveness: This impacts both the clinic and the patient. The initial prosthesis is only in place about 1-3 weeks, as the tract shrinks, settling in to its more permanent length, thus some patients will have 2 to 3 TEP changes within the first 6-8 weeks of their puncture. In the event the TEP dislodges, the non-indwelling devices are the cheaper replacement. (In the interim, they need to have a 14Fr or 16 Fr red rubber catheter, or dilator tool with them at all times to place within the puncture site to maintain patency and avoid aspiration until they can get to the clinic)


3. Patient-maintained: IF (and this needs to be determined mindfully) a patient is a candidate and interested in maintaining their prosthesis, this can provide greater independence and reduce office visits (thus reducing healthcare and travel costs, which can be hardship for this particular population given the sparse availability of well-trained Speech Pathologists outside larger metro areas). Training the patient to manage their prosthesis can begin at time of initial TEP placement, as long as they are deemed ready. If the patient is able to achieve voicing after the first TEP placement, remind them that it can take 3-4 sessions at least to optimize their HME devices for the best pulmonary rehabilitation and coordinated TEP use, as well as gain proficiency, and to stabilize to a prosthesis length and diameter. Eventually, the frequency of visits will lessen as they become more successful with TEP use.


Continually Assess Voice Quality, Fluency and Strength.


The quality of the TE voice can provide clues to what, if any, anatomical or behavioral elements may be contributing voice production. Encourage them to keep practicing. If they have difficulty, troubleshoot using the most reasonable and cost-effective approaches first, and preferably only alter the prosthesis type or diameter if there are multiple failed attempts or chronic symptoms. As Dr. Blom wisely says, “Respect the Tract”.


Listen for the following when assessing TE voice:

- Quality: wet/gurgle;, strained;

- Fluency: consistent crico-pharyngeal segment/esophageal vibration vs. inconsistent or difficult to initiate
- Strength: weak/low intensity, high intensity without back pressure at stomal devices; adequate
- Education (both verbal and visual) is crucial. Remind the patient that if their voice stops working, or becomes very difficult to produce, and they have tried the initial strategies of cleaning their prosthesis, clearing the throat of any excess secretions, and adequately occluding their stoma (either digitally or ideally with an HME system), they need to contact the clinic for an appointment as soon as possible. If the puncture is beginning to stenose, the patient is at much higher risk of closure and possible re-puncture. At minimum, once in clinic, it requires extra time determining if any patency to the tract exists, attempts to re-dilate (which can take 20-90 minutes depending on degree of stenosis and stiffness of tissue) and placing a new prosthesis. Ideally they are provided with and trained how to insert a red- rubber catheter or dilator tool so they reduce aspiration risk. To continue their communication restoration, our patients return approximately 1 week after the initial TEP, then 1 month, then 3 months post-TE puncture.


Know your vocabulary.


There can be a steep learning curve for patients regarding all the names of devices and how it relates to and benefits the new anatomy. It is important to thoroughly educate patients, have visual reference guides and provide ample time to learn the proper terms and names of products they use. We all know how creative people can be with monikers for the stoma (“Blowhole”), to larytubes (“breathing tube”) to their TEP (“plug” or “talking valve”). While it can be helpful to reinforce a patient’s ownership of this new status, it can also lead to confusion and potentially even life-threatening miscommunication when relaying an issue over phone or email to the Speech Pathologist or EMT. For example, if a patient calls and says “my tube is leaking” and you are aware they have a larytube for their stoma, one may assume they actually meant their prosthesis is leaking fluids into the airway. Perhaps they call about their voice not working because of mucus in the lumen of the TEP but in actuality it is a clogged larytube or stoma, which can put patients at risk for hypoxia. Assess your patients learning style and pace the information, while also being as accurate as possible to enhance clarity of communication and ease troubleshooting. Depending on how educated and savvy your patient is with their knowledge and understanding of the vocabulary for a laryngectomee, that may play a role in the decision to stay with a patient-maintained TEP or opt to try the clinician-maintained indwelling prosthesis. Reassurance that they will learn the vocabulary over time and that a particular device type does not have to be permanent can give patients the time needed to process the changes and practice their new voice.


In conclusion, TEP voice prostheses can be invaluable to laryngectomees for communication restoration and the initial placement with new voicing is a significant goal achieved. Recognizing that pre- and post-operative patient education is a priority, in small increments at their preferred pace, as well as clinician skill-building through regular CEU and product trainings, will allow for a better patient-clinician relationship, and ultimately an improved quality of life for the patient.


Brienne Ruel, M.A., CCC-SLP
Speech Pathologist Voice & Swallow Clinics
Department of Surgery University of Wisconsin- Madison



1 Keck T, Durr J, Leiacker R, Rettinger G, Rozsasi A. Tracheal climate in laryngectomees after use of a heat and moisture exchanger. Laryngoscope 2005;115:534–537.
2 Blom, E., personal communication, Vanderbilt University Medical Center, 2011.


 
 

 

 

 

 

 

 

A Sweet, Sad Smile


Grief is a complex emotion. It sneaks in and around the edges of our everyday lives. Sometimes it is just a gentle reminder like a kind, sweet smile from an old friend and other times it’s an angry bully who appears out of nowhere to sucker punch you in the gut.


Dad died in January after a long illness and an even longer, wonderful life. It was [and is] sad but not unexpected. I miss him but my grief is not wrenching. It is not the kind that brings you to your knees the way it was for a friend whose beloved 4 year old grandson died in her arms from a previously undiagnosed congenital condition. That was truly awful and as I grieve for Dad I have often thought of the unimaginable pain she endured to get to the point today, 4 years later, where she can delight in his memory and the grief is, for the most part, that kind, sweet smile but always with a sharp and tender pang . It remains a sorrow she will carry for the rest of her life. Corbin would be so proud of his “Mimi” and her courage, as am I.


Some people never get over that kind of loss. Others seem to recover their footing remarkably fast. And it can be hard for those of us on the outside looking in to understand why. We often hear “everybody grieves in their own way” and, to be sure, some of those ways can be pretty disconcerting!


Being so intimately involved with Dad’s care during his final weeks changed my perspective on many things and grieving his death started long before I watched that last breath back in January. I miss his sharp insight and the excited discussions we had over books and current events. I miss his corny jokes and the way we laughed over stuff no one else thought funny. I even miss his rigid “Mr. Rules” thing although that one caused so many fights over the years. Most of all I miss knowing that he had my back. Dad stood by me even during all those years when I struggled to find my own footing including some pretty major detours, shall we say! He even told me of his own cancer by saying, as an aside, “I didn’t want you to be the only one in the family fighting this.”


He was a really good Dad. One time we were out to dinner with relatives and they asked about voice box transplants and whether they were an option for me. I explained about how complicated the anatomy is and with the delicate nerves involved for both speech and breathing I doubted that ever it could be done without experimentation. Dad spoke up, “I would give her mine to try in a minute. I’ve talked enough for a life time already.”


Sometimes it seems like life is just one long series of griefs. I miss my voice, my Dad, my misspent youth, my easy airway, my skin that fit….


I am cool with missing Dad. He and I are going to a Red Sox game in Baltimore at the IAL [thank you, Ed Chapman.] I will be wearing Dad’s fav Red Sox T shirt and we will have a beer and a hotdog. I still get emotional when I think of him but now it’s like my 6 year old grand-daughter says, “Sometimes when I’m really happy my eyes fill up with water.” It’s that sweet, sad smile of memory.

I don’t ever want to lose that.


 

 

 

 

 

 



 


 

Anita Lewis, Flourissant, CO
10/2010


We have been retired now for 4 years and it was our choice. I had my laryngectomy surgery in October of 2010 and for 8 months I never used my EL. I didn't like the way I sounded so I spent a lot of time taking notes and communicated that way. At the time we lived in the mountains of Colorado and due to my having had pneumonia 11 times in 4 years I needed to be in a lower elevation. That really is the reason I had the surgery to begin with. I was aspirating all that I ate and drank due to the radiation from my neck and throat cancer back in 1999.

We had no idea where we wanted to live or move to at the time, so I said lets buy a motorhome and travel until we find an area we might like enough to settle down in, or just keep traveling. We took our first trip to the IAL meeting in Kansas City in 2011 and that was the best experience I ever had. Learned how to use my EL and have learned to love it. I met some wonderful people and I really think it was the most positive way to transition into my new life and uniqueness!

We currently volunteer at various state parks, and right now we are at an historic site in Oregon. We have been to several different parks in Oregon but also California and Utah. We love it and I encounter all kinds of people and for the most part have good feedback from all,

I especially love the children and they are fascinated with my voice, they think it's "cool". Children are open and very inquisitive, they ask questions and I try to answer so that they understand.

We love our life style and we have some great friends we've met over the last 4 years, and we are going to continue our journey until we can no longer do it. Today is my 68th birthday and I am happier today than I was when I had my voice. I love my old motorhome, it suites our needs.

 


 

Bob Bauer, Hayward, CA
Class '08


Well, I retired way back in 1987 when I was a young lad of 51. IBM made me an offer I couldn't refuse. After retiring I took a short break and then did some contract work. Oh ya, I was a computer programmer. Then I found a permanent position which was very enjoyable until I got laid off.

Since then it has been a wonderful journey. Did a lot of sailing to and from Hawaii, Mexico and in the Med. Still going strong at 79 as a Lary. All the best to all my fellow Larys.

 


 

Gary, Lakeland, FL
2013

I retired at the age of 62 and worked in retail most of my life. Never have regretted it and never looked back at retail. Shortly after retirement was when I discovered something wrong with my voice and had it checked out only to find out that it was cancer. This was in January of 2007. So I went through radiation and chemo to kill the cancer and was lucky enough at that time to get rid of it. After approximately 5 years the cancer came back and in March 2013 I lost my voice and had to have my esophagus reconstructed. It took a few months to get over the surgery and now I’m back to being able to do many of the things I did before surgery. I may have lost my voice but I do have my hands and leg, and I enjoy the outdoor life.

At 70 now I feel I have a long life to live yet. So early retirement has been a blessing to me. I live in Florida and enjoy the great weather here.

 



Jim Henderson, Whitinsville, MA

1987

I retired in 2000. I had reach that age and was having trouble with COPD. I find retirement better than I had hoped.

 

My wife and I are able to go anywhere at the drop of the hat. Going to Tennessee next week and Oregon next month.

I am also able to dedicate time to Veteran functions. I have had no problems traveling because of my trach.

 


 

Bill Smith, Santa Barbara, CA
2006


I was retired 6 yrs. before my surgery. I slowed down for about 2 months then I decided what the heck! I got up and me and the wife went out on the town and we haven’t slowed down yet. We have covered about 44 states and plan to tour the rest.

The operation was a setback for only 2 months. My wife said we are getting older and we need to go see things we haven’t seen. So get out there and go even if its only to Walmart! You will feel better on the go!

 


 

Ed Kuszajewski, Pittsburgh, PA
Class of 2014


Greetings Webbies! I had my surgery May 7, 2014. A complete and total shock.

However, with a lot of support from family and friends I got through it. Now that I am retired I have created a bucket list and I’m getting things done from that list. I was planning on retiring in 2016 but now that I am I’m enjoying it. It is nice to have time to get things done at your own pace!

After working in the automotive aftermarket for 45 years, and never working less than 50 hours per week this retirement thing is great. Stay well everyone!

 



Mike Cohn, Wheeling, IL

Class of 2010


Hmmm...retirement....I thought I had a few more years until I had to consider it, but about 6 weeks ago, after a large layoff of people, the company I work for offered most of us over the age of 55 an very good early retirement package. We were told more layoffs were not necessarily going to happen if enough people took the package, but it seemed to be "an offer we couldn't refuse" and I accepted. I will work until the end of June, take a few weeks off to relax and enjoy the new life with my wife. Then I will seek part time work in my field, which appears to be plentiful in the Chicago-metro area where I live. I'm a little concerned about interviewing; I am about 5 years a Lary, with almost 9 years in my company, but have 25 years’ experience in my field. I know it will all work out. We Lary's are resilient.



Randy Borne, Belle Chasse, LA
September 2006

I chose to retire in 2013 after 42 years on my job. I am having a great time. My wife and I travel and trail ride our horses. Will be leaving for a week trip to Italy and France this month.


 


 

Carl Strand, Mystic, Connecticut
February 1993

 

I returned to work as a Senior Utilities Engineer at the Groton, CT facility of Pfizer, Inc. six weeks after leaving the hospital. Since the majority of my work was with special projects and with budgeting and accounting for an annual seven million dollar budget, I was able to escape the extreme noise levels of a large power plant for the most part.

Just about four years later, I retired with a "Golden Handshake" as part of a facility wide downsizing. I received a generous severance package and a full retirement which I took as a lump sum, given my cancer history.

Since I was already involved in a number of volunteer positions, my life was quite busy from the beginning. I also took on a part time position as Treasurer of my church. As with so many of us, I soon wondered how I had had time to work at a full time job.

My wife and I had intentions of doing a fair amount of RV travel and we purchased a 32 foot Fifth Wheel trailer and the truck to tow it. However, it soon developed that her health situation was such that our actual travel was limited. She passed away ten years ago this August.

I found that for the most part, I am a homebody, limiting my use of the RV to one or two trips a year for a week or two. I enjoy my life on the Mystic River and sailing my catboat in the river waters.

All in all, retirement has been good. It was eighteen years ago this past February and although I have the usual issues with aging, my health has been generally OK and life has been good. My children and grandchildren are nearby as are a number of other family members.

When I took the "handshake" it was the right thing to do.

 


 

Jim Culbertson, Corpus Christi, TX

 

I retired in 1999 and have thoroughly enjoyed the experience.

I had my laryngectomy in December 2013. That slowed me down for about 6 months but have resumed the life style that I enjoyed before the operation. I go to dances a couple of times a week and work out at the local fitness center every other day. I drive across country and fly airlines often with no problems. For the first year I did this with an electronic larynx but have been using TEP for the last 3 months with no difficulty, however, I always keep the EL as a backup.

My biggest problem is COPD which was a problem even before the operation. It does not affect me in normal activities but does when I exert myself.

I live in Corpus Christi, TX and enjoy the beach. We are fortunate to have 2 very good voice pathologists here.

 


 

Bertrand M Bell, New York City, NY

My retirement was forced. I have plenty to do. I live in NY City!



Phil Walrond, Roanoke, VA


I am 57 years old and plan to retire at around the age of 96 or 97. If I live that long.

 


 

Len Hynds, Newtown, UK

As a police officer in the UK, one can retire at 45, after 25 years, but after just half my service in the job I loved, although the pay was pitifully low I left the CID at Scotland Yard, to become the head of security for the International stores, then the largest retail group in the UK, with over a thousand stores throughout the country.

Supermarkets were just starting and we all had a lot to learn. I like to think that those rules I laid down all those years ago, in how to deal with customer, staff and supplier theft are still being adhered to today. Everything was based on fairness, and rigid attention to the truth. I trained every one of my 160 staff, until I had such an efficient team,doing all sorts of security jobs, from investigators, auditors to depot guards and store detectives.

At the age of 45 I decided to move on and became the head of security for an Insurance group, concentrating on false claims. After five years, I started my first company, supplying store detectives to the large supermarkets and stores. At the age of 55 I sold that company to a security TV company, intending to retire, but boredom at the inactivity got me down after just two weeks, and I took on a job as the warehouse manager of a paper mill, which was like going back into Victorian times with the conditions for the staff.

I left at the age of 60 and started a company selling car parts to the car repair industry until at 64 I went down with heart trouble, and had open heart surgery at Guys, where metallic heart valves were installed, and a by-pass done. I continued running my business for a further ten years when at 74 I developed throat cancer, and subsequently lost my vocal cords.

I had no intention of ever retiring, but common sense took over, and I gave the company to the three oldest members of my staff. That was eleven years ago, and I am busier now than I have ever been with my new writing career.

Life is good.



 


 

Thank you for your submissions. Edits are used for length, clarity and to keep comments on subject of the month. 

Staff of Speaking Out

 

 

 

 

 

 

Conversation Gaps: To Fill or Not to Fill?

 


Recently someone asked me if there were any ‘up’ sides of being a laryngectomee. It made me think. One of the main advantages I’ve experienced is that I’m actually calmer now in the company of others. In some senses I would even say I enjoy conversations nowadays more than I did pre-op.


If you know the Enneagram [a model of human personality], I would say I’m a number nine; the peacemaker, trying to smooth things out, making sure no-one’s feathers get ruffled. So in conversation, I would be eager to support the other person. Often this meant murmurs of ‘yes of course’ or ‘I know what you mean’ or just ‘uh huh’ as they were talking. Or I might fill in a word that I thought they were searching for. And if they seemed tongue tied, unable to voice their thoughts, I would try to say it for them.


Sometimes this was good – it helped conversations flow more easily, it helped bring a shy person out of themselves, or it could help some difficult topic to be voiced as both of us were working together to put words on the thoughts and feelings they were suggesting. And, up to a point, it was good. But it was also taking a lot out of me. I was, in a sense, doubling my work in the conversation.


For the first months after laryngectomy I could only write, and it was probably seven or eight months before I could have anything like a conversation using the electrolarynx. During those first months I felt dreadfully anxious around people. I dreaded visiting hours. I couldn’t put words on what I was dreading, but looking back I would say a lot of it was that I couldn’t fulfil my usual ‘peacemaker’ role in conversations, and didn’t know how to relate to people outside of that. It just takes too long to write ‘Uh huh’! And conversation filler said with an electrolarynx sounds more like an interruption than a murmur of appreciation. So I was reduced to nodding and smiling as my main means of showing support for the other person. And these felt very meagre by comparison to speech – I was nodding and smiling so vigorously that I would be exhausted after half an hour!


Gradually I’ve learned to relax with my more limited conversational abilities. And to my surprise, I’m finding myself more at ease now in the company of others than I was pre-op. A lot of those little conversation fillers were, I can see now, prompted by anxiety. So anxious to help the other person that I wasn’t hanging around to see if they actually needed any help! As I’ve learned to relax with my enforced silence, I realise the world doesn’t fall apart if the other person is hesitating or stumbling around searching for words. They usually get there in the end anyhow and it doesn’t seem anyway important that I can’t help them through. I even find myself enjoying the silences during those little conversation gaps that I used to rush in to fill with ‘uh huh’ and ‘yes I know’ or the words I thought the other person might have been searching for. It’s a relief not to feel so anxious on their behalf. A weight has lifted from my shoulders.


Of course there are losses too. Sounding robotic and slurred, not being so well able to express myself, not being able to convey emotion, not being understood by strangers or in noisy environments, not being quick enough to get the electrolarynx into position to have my say before someone else interjects with a new point, curtailing stories because speaking is so laborious, keeping things to myself because it doesn’t seem to be worth the effort to say them, jokes falling flat when you have to repeat the punchline three times before anyone gets it. And so on - lots and lots of losses. But it’s good to be able to see the positive side of things too.


I hope others may also feel my silence during conversation lulls as a benefit though I haven’t actually asked people if they notice any change in how they feel when talking to me. One friend remarked that when he saw me coming into a room with my marker and whiteboard (this was back in the days before I could use the electrolarynx) he used to feel a great relief. He knew now there would be many moments of silence while people waited for me to write down my thoughts, and he looked forward to those times when he could relax from the heady buzz of conversation. My effect isn’t so pronounced now that I’m using the electrolarynx, but still people have to slow down to the word rate of the EL and wait for me to find the sweet spot and get the technology together. So all this probably has a calming effect. Ironic isn’t it – I used to be the one filling in the gaps in other people’s speech, now I’m the one adding silence to conversations!


Now that I’m not so troubled by pauses or hesitation, it’s easier for me to feel friendly towards people during conversations too. We’re on equal terms now that I don’t feel pressured to support them. And it’s much easier to like someone you are equal to than someone you feel burdened by. It’s a bit like the boy who, at 20, was disgusted by his parents’ ignorance about all the important things in life. But then, when he was 25, he was delighted to find how much they had learned in the past 5 years! Pre-laryngectomy my family and friends were a bit inept in conversation, needing a lot of help from me. Two years later, I’m surprised how well they have all matured!

Noirin

 

 

 

 


 

 

This past month has seen the anniversary of the end of the war in Europe, that most terrible time, when 55 million people were killed and untold numbers injured. It brought back many memories flooding back. May I tell you a true story, not one of blood and gore, but of compassion by two ladies, my mother and my sister, whose example so natural to them, changed my outlook for life.


BROTHERS

It was in 1944 and we had been at war since 1939. We still had another year to go before the end; my three sisters and three brothers were all in the armed forces, the army or navy, throughout the world. Being the youngest I couldn't wait to be called up. Mum, Dad and myself had lost three homes through bombing, in the first myself being trapped underground for four hours until dug out with my head trapped by masonry. All nearby schools had been demolished so I left school at the age of twelve, and lying about my age, saying I was fifteen, I started work. Still telling fibs, but used to it by now, I enlisted in a Royal Artillery Regiment, Anti-Aircraft Company, and after training as a Cadet Runner, went out each night with one of the mobile AA Guns onto the streets of London, firing at the swarms of enemy bombers overhead. During the next two years from age 12 to 14, I joined two different Cadet companies attached to Infantry Regiments, both thinking I was 14 to 16. During that time I excelled in soldierly matters, becoming a Cadet Sergeant, gaining the coveted Red Star on the sleeve, " The War Certificate A". In effect a very bloodthirsty young man, an expert with the bayonet, indoctrinated to hate and kill the enemy.

Having set the scene for you, it was on Christmas morning 1944, and Mum was cooking Christmas dinner, which was horsemeat. We were all thinking " Oh, for a chicken, let alone turkey!" when my sister, Kit, who drove an army ambulance ran in to say she was passing and taking a young German prisoner and his elderly soldier guard from a military hospital to a prisoner of war camp. Mum insisted she stop and bring them in for tea.

I was horrified at the idea of the hated enemy in my own home, somebody from that nation who had nearly destroyed my world, and had caused so much heartache and deprivation to my family. I knew that as a prisoner he could not be touched, but I had been trained for two years to kill the enemy on sight and this was going to be a strange experience. I had never been so close to the hated enemy before. Firing the Vickers Twin Heavy Machine Gun on the cliffs at Ramsgate at enemy planes swooping overhead had been impersonal, just a large black machine, with no real thought of the man inside.

He came in nervously, with his elderly soldier guard, and was obviously on edge sitting in an English home, what we had left of it. I was astonished how young he was, just a few years older than myself. He was wearing this strange uniform and had been captured on our drive towards Arnhem. In fact, he looked an awful like my brother Alf, the sailor on a Destroyer in the Pacific. He could speak English, and Mum made a fuss of him, giving him large slices of our Xmas cake, the ingredients of which she had been saving for some time. Mum got him speaking of his own mother and he spoke of how the Russian advance was getting close to her and he was terribly worried. He spoke of his brothers and sisters and it was like a mirror image of my own family. As I looked at him I realised that he must have been in the Hitler Youth movement, and indoctrinated like me from the age of twelve to kill the enemy on sight. I was astonished that the enemy could have a mother he worried about, and brothers and sisters.

He was obviously overcome with these strange English people who were treating him as one of their own, and seemed to have forgotten all those dreadful war years. I thought he had tears in his eyes as they stood up ready to go, as Mum held his hand and patted it, as only a mother can and wished him well. As I nodded goodbye to him, he put out his hand and I shook it. Those eyes looking back at me were so much like my brothers I instinctively knew there was empathy between us, and that meeting had been a revelation to both.

My mother and sister taught me a lot that day - that in every country there are many different sorts of people, and quite frankly I had been so wrong in my blind hatred for the whole nation. It’s a lesson I have never forgotten.

 

 

 

 

 

 

 

What's New?



 

Windows 10


I started the month in my usual search for interesting tech news to research and follow-up on...well this month I wound up right back where I had ended last month. April's news is still the hottest "news". As it has been reported since October 2014 Microsoft is in the final development stages of its latest iteration of the Windows desktop we have all used and grown with over the past 30 years (give or take a year or so)/ Microsoft has decided to set a new tone for this version by skipping what would have been the next version number 9 and going on instead to Windows 10...there are various speculative reasons for this, but really all are meaningless since this will now be the final forever version of Windows!


At this point, users can only download Technical preview builds via Windows Insider. Microsoft is expected to offer ISO file downloads, which will be free for users who own a valid license for Windows 7 or Windows 8.1. Details should be made available this summer. From the release date of Windows 10 there will never be another numbered version released....one less thing to worry about remembering. Microsoft will be updating and adding /deleting proram features through their monthly update program...many will be in the background as you read your emails and your Facebook pages.  A 33 minute video withall the new information is here:

https://www.youtube.com/watch?v=VTkvN51OPfI

Iinitially Windows 10 will be free to all windows 7, 8, and 8.1 owners. after that the debate is on to whether future use will be by a license purchasing program or a subscription based program. There are pro's and con's to each side of this debate and it may be several weeks before we hear the final word from Microsoft.

Apple Watches

The really big news for April was the opening for pre-orders of the Apple Watch. Now that folks have had them for a bit they are starting to provide us with reviews and their insights to the long anticipated wrist wear. For the average Timex user the Apple Watch will certainly not be on his/her gotta have list...but for the Apple fan this is the final Big Thing to have. A new review comes from Matthew Miller who loves his Apple watch even though he wore it wrong for a month... (current: Apple just released a minor update that speeds up third party apps a lot)
http://www.zdnet.com/article/one-month-with-the-apple-watch-pain-joy-and-daily-experiences/

Apple iOS Update

iOS 8.3 update badly needed...warmly welcomed! The linked article by Judy Novotny details all the ins and outs of this critical update and why you should update your Apple gear ASAP.

http://www.davescomputertips.com/ios-8-3-another-attempt-to-fix-ios-issues/

Passwords

Do you get reminders from your employer or your on line bank service or email service to change your password regularly? Have you ever wondered why? I have and honsetly never figured out a good reason...I reasoned that if I have had a good password working for me with no problems then why should I mess with success...and I finally found someone who agrees with me and my logic. Leo Notenboom of Ask Leo fame has expressed his thoughts ..do yourself a favor and read through his article..
https://askleo.com/is_a_periodic_password_change_a_good_thing/

 

WW Delphi Forum

Our Forum on the Delphi Network has a new coat of paint! ! The new format is called Zeta and has been under development for several years now. Delphi first released it for beta use about two years ago and after a period of time to let the dust settle our forum host Mike Rosencranz has flipped the switch to put our forum in the Zeta format. There are still some cosmetic changes happening but the Forum itself is now fully usable in the new format.
There are plenty of folks about to help if you should have any questions and if you haven't seen it yet you may just want to stop in and see the hard work Mike, Bill and Logan have put in to brighten up you day.

A word for Facebook Members from Mike R Administrator WebWhispers Facebook Group

The WebWhispers Facebook Group is our most recent addition. Many of our members are on Facebook, so we knew it was time to have a Facebook home for them. We invite all our members to join us in our Facebook Group. The best way to join the Group is to “friend” me on Facebook. My Facebook name is Shmuel Mitchell. Go on Facebook, type in Shmuel Mitchell and send me a friend request. As soon as I “friend” you, you will be invited into the WW Facebook Group. That is it and I will do the rest.

 

 

 

 

From HeadLines, Dec 2004, Our WW Founder Dutch Helms (1943-2006)

The Importance of “Friends”


by David L. “Dutch” Helms
WebWhispers Webmaster

Setting the Scene

In the period just before I was diagnosed with larynx cancer, the following significant events had occurred:

Months of futile marital counseling and a divorce, much needed in early 1991 and a transfer to a new duty station in Bonn, Germany. Late the next year, three weeks before my wedding to the woman of my dreams, she reconciled with her estranged husband. At that point my “family” consisted of an older, but ill, brother,a nursing home bound mother in Ohio and a distant, cut-off daughter.

In short, when initially diagnosed with larynx cancer in mid-1993 my “family support network” was virtually non-existent and it was from that point onward that I came to know the REAL VALUE of FRIENDS. Had it not been for my friends, I am not sure how I would have survived, recovered, and even prospered after my experience with larynx cancer and its aftermath.

 

Larynx Cancer

After almost losing my voice and being initially diagnosed with larynx cancer in Bonn, Germany, the USAF decided to MedEvac me to Wilford Hall USAF Medical Center at Lackland AFB in San Antonio, TX for radiation treatments. While I was gone for those two and half months, my friends back in Bonn, took care of my apartment, watered the plants, paid my bills, and took care of my car and mail. Through friends in San Antonio, I was able to find temporary employment at Kelly AFB so that I could work while undergoing radiation - something that saved me from losing all my built-up sick leave. My best friend from high school, Mike, was living near Houston but was often in San Antonio on business … so he visited me regularly and often, as did other friends. In late September of 1993 I was declared “cured by radiation” (allegedly), and though 45 pounds lighter, I returned to Germany to find everything shipshape and perfectly in order.

Unfortunately after barely three weeks back at work, I began to lose my voice again and it completely disappeared by early November. I KNEW what that meant and became more and more depressed, bordering on suicidal. With the help of friends, I again packed off to the hospital … this time to the mental health units at Frankfurt, Landstuhl, and Walter Reed … finally ending up back at Wilford Hall in San Antonio in January of 1994. Wilford Hall was initially unsure of what was actually occurring, so I spent much of January through March undergoing tests, hyperbaric oxygen treatments, and more tests. When not living in the Lackland AFB Visiting Officers’ Quarters, I stayed with a few friends in San Antonio and also quite a bit with my best friend from high school, Mike, and his wife, Pamm, and their three girls, in their home outside of Houston.

Meanwhile, back in Germany, my friends and co-workers knew I would not be coming back to work there. Through phone calls and faxes, we processed my departure from the federal civil service … all those complicated personnel, insurance, and financial matters. Additionally, my friends arranged for the sale of my two cars and for the movement of all my household goods and personal effects from Germany back to Texas. I hardly had to lift a finger … they took care of EVERTHING!!

Heart, too?

In late March, my doctors discovered I had a heart problem that had to be squared away prior to any major laryngectomy surgery. So, on 1 April 1994, I underwent single cardiac bypass surgery. Again, in the post-op period, my friends visited and called … even though all I could do at that point was “whisper”. When I was informed that my laryngectomy would be scheduled for 1 May, my best friend, Mike, told me I should expect to stay with him and his family … they were more than generous in extending that kind of hospitality! So, between 10-30 April, I stayed at Mike’s and while there was invited by them to stay “permanently” with them after my laryngectomy!! It was an offer I could not refuse. Knowing I would soon be “voice-impaired”, Mike and I went shopping and returned with a complete computer system (my first) and got it set up and running in his home office before I headed back to San Antonio for my laryngectomy. Little did I know at that time how fortuitous and influential that computer purchase would eventually be.

I underwent my laryngectomy on 1 May 1994 and, due to fistula complications, was not discharged until the 15th of June. During those six weeks, many friends dropped by to visit, but especially attentive and concerned was Mike and his family. They were simply “THERE” for me … 150%.

Learning to talk, to compute, and to live

So, in mid-June 1994, I moved in with Mike and Pamm into an upstairs bedroom of my own, sharing the bathroom with the three girls (what a joy for them, eh?). Over the next many months, this family of “friends” fully integrated me into their family life … to the point that I was soon known to their family and friends as simply “Uncle Dave”. Living with Mike and Pamm and their three teen-age daughters “forced” me to stay active, engaged in life, semi-productive, and fully dedicated to getting “rehabilitated” as quickly as I could. I am not sure HOW I would have handled this post-operative period without them … but I truly do believe that they not only saved me from possible reclusion and depression but quite possibly also saved my life!

In May of 1995 I returned to Wilford Hall for outpatient TEP/prosthesis surgery and was thus able to shelve my Cooper-Rand EL and replace it with Blom-Singer prosthesis speech. I was also slowly learning the “ins and outs” of using a computer and by the end of 1995 had established my own personal web site on AOL. Building on this experience, in mid-1996 I started to create a series of “Cancer of the Larynx” pages on my web site … an attempt to centralize the few larynx cancer sources that were then available on the Internet and a place to "talk" about the disease in layman's terms ... from the point of view of a larynx cancer survivor/laryngectomee. Also about this time, I finally moved out of Mike’s place and into an apartment of my own … electing to make my home the suburbs of Houston, Texas. Needless to say, my friends Mike and Pamm helped me move and made the transition a piece of cake. I also bought a new PC, leaving my old one with Mike and Pamm, and by Christmas of 1996, the basic Cancer of the Larynx site was up and running. I then hit on the idea of creating, on the site, a LIST of laryngectomees worldwide who would be amenable to accepting Email questions about the disease from "surfers" looking for information.

Stepping out into cyber space

We all know what has happened since then. Those primitive “Cancer of the Larynx” pages have now expanded to the stand-alone “WebWhispers Nu-Voice Club” … with a web site over 91 megabytes in size, over 267 pages of information with well over 2,170 graphic images. The club now has approximately 1,228 laryngectomee/caregiver participants in addition to 156 doctors, nurses, and SLP’s, and 34 laryngectomee vendor members. Of these, over 900 actively participate on the club’s two Email ListServs which allow members to share experiences and to help each other in the full range of challenges of living life as a laryngectomee.

As a result, I have not only had the benefit of the love and support of OLD FRIENDS since 1994 and the new local friends I have made since then, but have also made many NEW FRIENDS through my association and work with WebWhispers and the International Association of Laryngectomees. While many of these “friendships” began in cyberspace (via Emails), many have been deepened, solidified and sustained through the annual IAL meetings and through the WebWhispers events we were fortunate to have during these meetings … not to mention the WebWhispers cruises we have sponsored over the past few years.

In short, were it not for my FRIENDS, the quality of my life over these past 10-11 years would have been vastly different … far less full, far less enjoyable, far less productive, and far less worth living. It is in the tough times that one finds out who one’s real friends are … and, luckily, in my case, when my tough times came, many of my friends were there for me and have remained so to this day. Additionally, these “tough times” produced even MORE friends … from all over the USA and, in fact, the world.

So, while my past and current “family support network” was and still is very limited, the love and support of my FRIENDS was and is always there. Because of these many friends, I count myself greatly blessed … without them, I honestly do not know where I would be today. In sum, I owe these friends my LIFE … and I hope and pray that, in my remaining days, I can lead a life that will warrant and vindicate the love and support they have generously and unselfishly given me. God bless them all!!

 


 

 

 

 


 

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

 

 

 

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