January 2010

 


 

 

Name Of Column Author Title Article Type
News Views Pat Sanders Starting 2010 News & Events
VoicePoints M K Benjamin MA-CCC-SLP Puncture & Prosthesis Education-Med
WebWhispers Columnist Christine Price The One Person Experience
Between Friends Donna McGary Play It Again Sam Commentary
The Speechless Poet Len Hynds The Brown Egyptian Mouse Poetry
Tidbits Of Interest Pat Sanders Healthy Appetite Information
P. S. Terry Duga In A Different Way Commentary
New Members Listing Welcome News & Events

 

 

 

 

Starting 2010

 

WebWhispers continues to grow with new members being sent to us by current members and many others coming from recommendations by our Vendors, SLPs, and Medical Personnel. Our brochures help greatly in letting our group be known. We currently have members 2600 with about 40 of those sitting in a file for bad email addresses. If you have changed your email address, please fill in an Update form, available on the home page in the upper right corner.

Every year we make some changes and hopefully improve some of our services and activities. One that has not worked the way we hoped was our WWHealthHelp List and we have just closed that down. Our WebW List is still going strong and we will be starting an announcement list, WWAdmin, for those who want to know what is going on but do not want to read or participate in discussions.

Our WW Forum has come to life. There are so many message boards on the Internet that many new members are accustomed to using them so, as soon as they see that we have message boards, they join. The Chat rooms are being used now regularly and our Forum Managers, Mike and Logan, have set up two chats every week so members will be accustomed to being there at those times. We have a reminder in the email list every weekend of upcoming chats. In addition, Elizabeth has started a chat in which she is helping people who wish to learn ES and is putting some of the instructions in a Forum Message Thread. We have another chat being planned for caregivers.

I want to thank the volunteers mentioned above and all of those who work in Moderating, List Management, Database, Website, our Officers and their Committee workers. Lastly, I, and our Editor, Donna McGary, really appreciate everyone who writes for Whispers on the Web, Gary, who makes up our contents index and Len Librizzi, our esteemed WebMaster, without whom, we would not have this newsletter!

Thirteen years ago, we had 12 members, who had just found a few web pages attached to Dutch's personal website. There were no email lists, no message boards or chatrooms. Just a few people who saw the note Dutch put on the website that he would like to compare notes with others who had had a laryngectomy.

Emails with the first people in Dutch's group:

http://webwhispers.org/about/history.asp

Get acquainted with our Founder, Dutch Helms:

http://webwhispers.org/about/founder.asp

 

Enjoy,
Pat W Sanders
WebWhispers President
 

 

 

VoicePoints written by professionals 

Coordinated by Meaghan Kane Benjamin, M.A., CCC-SLP

 

                                         meaghan.benjamin@mac.com  

                 

 


Decisions: Puncture & Prosthesis

Meaghan Kane Benjamin, MA CCC-SLP

 


In the last article we discussed how good care begins with a knowledgeable medical team that includes strong communication between the patient, the physician and the SLP. This is important because management of the patients that have undergone a total laryngectomy, require ongoing care. This article will explore one aspect of post laryngectomy care for patients who have a tracheoesophageal puncture. Once the decision for a tracheoesophageal puncture has been determined, there are ongoing decisions regarding prosthesis selection based on a myriad of issues.

The first decision comes with regards to whether the patient is having a primary or secondary puncture. If the patient is having a primary puncture, the next step is to determine whether a prosthesis or a red rubber catheter will be placed at the time of surgery. If a prosthesis is placed at the time of surgery, it is typically an indwelling style due to the larger retention collar which helps stabilize the newly formed puncture tract. The typical length would range between an 8mm and a 12.5mm with the larger average leaning towards 10mm. The patient would not speak with the prosthesis until the stoma is healed and able to tolerate the pressure against it, from the thumb occluding the stoma, which would range from 10-14 days.

The most important question that needs to be answered in patient selection is whether the patient is appropriate for a primary puncture based on extent of surgery, past medical history, current medical issues. If it is determined that a puncture will be completed primarily, placing prosthesis at the time of surgery is a very strong, viable option. The pros include comfort, voicing and reduced cost. These considerations can include the following:
The initial device is covered as part of the OR charge. The average device life for a prosthesis placed primarily is approximately 4 mos. The patient does not typically require the initial fitting or downsizing over the first 8 weeks. A feeding tube can fed through some punctures during the first few days to be used as a nutritional source. Migration of puncture tract that is often observed when a red rubber catheter is placed due to the pressure applied, from it being secured in place, can be avoided. The discomfort of having a red rubber catheter sutured to the neck can be avoided. The Pt. is able to begin voicing as soon as the stoma heals.

The main concern for some medical professionals is that some patients require an alternative method of feeding such as an NG tube vs. being fed through the puncture tract. Another concern is that the patient has an indwelling prosthesis which might not be the final prosthesis for that patient. Given the large number of prostheses that exist, it is easy to change to a patient changeable or different style indwelling based on patient needs.

For patients that have a secondary puncture completed, the benefits of placing the prosthesis at the time of surgery are reflected above. An added benefit is that the patient can be voicing in recovery and immediately begin learning how to complete adequate stomal occlusion, phrasing and overall effective communication.

Now that the patient is effectively communicating and has become comfortable with stoma care, stomal occlusion and voicing, the focus can shift to what the patient’s overall goals and medical needs require.

Ideally, the patient does not have any issues, is perfectly comfortable with all aspects of their care, can speak easily with any type of prosthesis and the prosthesis lasts for at least 6 months. The reality is that many patients have a number of issues going on. They may live far away, not have access to regular transportation, have reflux, thyroid issues, recurrence, change in medical status, stricture, financial & insurance issues.

It is important that you, as a clinician, are familiar with all the options for prostheses on the market so that you can help meet the patient’s needs while using your clinical problem solving skills to determine what might be the best prosthesis and why. There have been past articles regarding how to best trouble shoot different issues that the patient may be having so we will just review some very specific common issues that may be managed with choice of prosthesis. I think it is important to clarify that there may be other things that need to be addressed in addition to changing the prosthesis:

Aerophagia: Duckbill, Increased resistance, (atos) NID or Activalve.
Leakage Around prosthesis (typically requires additional medical work up and other interventions): Inhealth extra large flange/ Inhealth special length

Leakage through prosthesis due to pressure issues: Duckbill, Atos NID, Provox 2, Provox Vega, Inhealth Increased resistance, Activalve.

Device Failure due to Yeast/Biofilm: Advantage, Inhealth low pressure non indwelling, Atos NID, Provox 2, Provox Vega, Activalve

Tight/strained voicing: 20 fr.Classic; 20 Atos NID; Provox 2; Provox Vega

Be patient specific, not vendor specific, when it comes to meeting the needs of your patient. If you keep up on what exists and why, it is easier for you to determine what will be optimal for your patient. I specifically didn’t put cost as the number one factor because if you put in a $30 prosthesis and the patient leaks every two weeks or a $300 prosthesis and the patient only needs to come in once every 6 months, you actually saved the patient $180 in cost alone by using the $300 prosthesis.

Another way of looking at it is quality of life. If you place a prosthesis that costs $50 and the patient has to strain to talk and can’t be hands free but you put in a $200 prosthesis and the patient can talk and be hands free but the device life is the same, which would be the best way to go? The patient would ultimately be the one to determine that but would need you to educate them on the options so that they can make an educated decision.

Managing TEP goes beyond just changing the valve. Our next article in this series will focus on swallowing issues following total laryngectomy.

 

 

 

 

 

THE ONE PERSON



A little while ago Donna asked me if I would like to write an article about care-givers. Because I am one of said people it has taken me far longer than I anticipated in getting around to actually doing it - time is a precious commodity for carers and must be taken where and when as possible. For many this article will not be appropriate - because "your" larys have gone on to lead independent lives - this is for others,like myself, who are carers 24/7 - in my case, approaching year 11 now. The title may have thrown you slightly - but please read on and it will hopefully become somewhat clearer.

Being "a carer" is not a term I like very much. There are other words for what I and many others do every hour of every day for those we love who have, however reluctantly, become a part of this unusual world we inhabit - I call it Laryworld. There are many alternatives to the word carer: care-giver, helpmate, spouse who loves a person and helps them, a child(of any age) giving love and help to a parent, a friend helping another friend - the list goes on.

I decided that before writing about my true feelings here, I had better check that I was not the only person to feel - in some way - so cheated. I asked, on our British website Laryngectomy Life, for the thoughts of other caregivers and the answers were a revelation! I knew that deep inside me, to my absolute shame, I felt resentful and cheated. Cheated of all the things that my husband and I had planned to do now that the family was grown. Our dreams, worked towards together for so many years, lay in ashes around us. Now ,alas, they are all out of the question. After the horror that is the lary journey, my husband contracted various other problems which, to my sorrow, limit his life very severely both physically and in length of time left. This means, of course, that my life is also restricted; our days are governed by 6 hours on a nebuliser and trips are out of the question for him/us, because where he is, I am too.

Some of the words which came from the other caregivers about their own personal feelings are most certainly NOT what I expected. I thought it was just me who felt this way. It turns out others feel the same and as I list the words we all have used to describe our feelings, I would ask you to please not judge, not until you have walked in our shoes for any length of time.


  • Fear
  • Resentment
  • Sorrow
  • Guilt
  • Loneliness
  • Constant Anxiety
  • Tired
  • Afraid
  • Anger
  • Loss of “me” time
  • Overwhelmed
  • Isolated

 

However, the one word that always appeared amongst all these very real and heartbreaking feelings - was LOVE for the patient. I think if we are honest, we all will admit to having felt every single one of these feelings at one time or another. It may be difficult to understand unless you too have walked the rocky road that is caring. Like me, we all love our charges/patients, call them what you will, but it does not stop these negative feelings creeping in unannounced and uninvited to fill us with doubts, fear and, for me, overwhelming tiredness.

The most wonderful response I received was from Phyllis in Georgia, U.S.A., whose husband has just had his laryngectomy. I print it here in its entirety. It will also explain my somewhat obscure title for this piece !

Christine,


I don't know another good title, but I know how I feel.

I feel like I am the one person in the world who settles him when he feels bad or is anxious.

I am the one person in the world who he can snap at and get frustrated with without having to later try to explain that he was tired or felt bad or was simply blue.

I am the one person in the world that he saved his sweet potato pie for today because he knows how much I love sweet potato pie.

I am the one person in the world who he scoots over in the hospital bed for and pats the bed for me to get in with him.

I am the one person in the world who has been married to him for 35 years--and we both admit some of those years were longer than others.

I am the one person in the world who leaves the hospital every evening with the prayer that he is stronger tomorrow and I can take him home soon.

I am the one person in the world who is scared to death to take him home because I am afraid I will not be able to care for him properly.
That is how I feel.

Phyllis Conn
Georgia



How wonderful is that piece? Thank you for allowing me to re-produce it here, Phyllis.

As a result of this article we are starting a chat for Carers - first Thursday of every month at 6:30 G.M.T. and 1:30 EST on the Web Whispers Forum. The chat will be in real time and all are welcome, but my target audience are carers, just to give us a little "me" time. Larys are certainly welcome; you may be able to offer help on certain problems.

It won`t be like the chat on Fridays and Tuesdays, as we have to have some format allow questions and answers without everyone answering at once. More details will be published nearer the time. PLEASE join us. Alone we are scared, but if we unite I am sure we can support each other and ultimately help those for whom we care.

I so look forward to meeting you all on the Carers’ Chat.

Christine Price (Wales)
 

 

 

 

Play It Again, Sam

 

 

I was on a bus heading out of Chitchen Itza when I was conscripted. Not into the Mexican army but into the ranks of Whispers on the Web. Conscripted is really not too strong a word for what happens when Pat Sanders decides you want to write for the newsletter. It was December, 2004 and my mother and I had sailed on the WW cruise to the Panama Canal. Since Mom opted out of the Mayan Ruins tour, I ended up sitting with Pat. As we chatted, I casually mentioned that I had done some writing and …well let’s just say that Pat can be very persuasive.

In all honesty, I was flattered and welcomed the opportunity to test my literary wings in a new venue. That was my first cruise and, more importantly, my first chance to get to be with other people who looked like me and spoke like me and lived like me. I made life-long friends that week. It was an extraordinary experience in many ways.

February, 2005, I wrote my first column of “Between Friends” based on the journal I had kept during those first dark months of 2000 and 2001. I decided this month to take a look back - not at my columns but at all the wonderful writers who make this such a great publication. I am very proud to be a small part of it.

That issue had six entries. Two from then WW president, Murray Allen; one called “Club Med For Cats” about volunteering at a local cat shelter and the other about the Casey Cooper nominations. [The 2005 winner was Len Librizzi; one of Mom and my new friends and tablemates from the cruise.] Dutch Helms also had two entries; both related to computers- one about accessing archives from the WW website, the other general information. Looking back at the older issues, it is notable how many articles were dedicated to just teaching readers how to use the website and take full advantage of this developing resource. Dr. Jeff Searl had an excellent article in VoicePoints about “Articulation” aimed at WW professionals - a column which continues to this day and serves to illustrate our commitment to providing information and support to everyone in the lary community.

Over the next few months, Joan Burnside started writing “Living the Lary Life”, a straightforward advice column about what to expect and how to manage all the changes day to day. It is still a great place to start for newbies.

http://webwhispers.org/news/mar2005.htm

June of 2006 was the first “Midnight to Georgia” column by Vicki Eorio- this one called “Georgia on My Mind “. Vicki is a terrific writer who continues to write for us from time to time. For several years, her column was the first thing I read and truthfully, some months, the ONLY thing that stayed with me

http://webwhispers.org/news/jun2006.asp

We learned in July that Dutch had suffered a recurrence and the prognosis was poor. We all braced for the inevitable as Dutch prepared to pass on the WW baton. It was a sad and difficult time.

August was a great issue. Elizabeth Finchem started her column, “Practically Speaking” with an article about larys and the water. Vicki wrote about making lists and knowing when to stick to them and when to “fudge it”.

http://webwhispers.org/news/aug2006.asp

The next month we all met Rosalie Macrae and WotW started enjoying a bit of “A Scottish Accent”. It was also the first month I started editing some of the articles. My first real foray was Libby Fitzgerald’s diary which she had unearthed during a closet re-organization. It came in the form of the notebooks she kept in the beginning and is both witty and poignant. It is definitely worth reading (or re-reading).

http://www.webwhispers.org/news/sep2006.asp

The October 2006 issue was outstanding. Vicki wrote about humor - you need to read about the projectile prosthesis and the proper lady. I cannot do it justice here. Rosalie was in rare form writing about nearly drowning in the bath and practicing belching with a young American goddess from the Olympic Archery team. There were also articles about making a difference in New Orleans from Jewell Hoffman, the conclusion to Libby’s Notebooks, Elizabeth Finchem on ES and a piece about a pretty nifty science experiment by yours truly.

http://www.webwhispers.org/news/oct2006.asp

On November 1, 2006 we lost Dutch. It was a tough time but I have no doubt he would be very proud of the legacy he left and how well WW has flourished and evolved over time, including the newsletter, Whispers on the Web.

Starting in January of 2007, Pat asked me to take on more responsibilities as WotW Editor. She had assumed the presidency of WW and became Managing Editor of WotW. We had some especially good contributors that month. One of my all-time favorites from a non-lary was written by SLP, Nancy Blair, called “I Married One”. It is a must read! Richard Crum wrote about milestones. BTW, Richard is the auctioneer- pretty amazing. Dennis from Idaho wrote in “My Neck of the Woods” about how being a plumber helped him understand his laryngectomy.

http://www.webwhispers.org/news/jan2007.asp

We began having a wide range of new contributors in 2007. Lanny Keithley, Buck Martin and Debi Austin all had interesting and very different ideas to share in our April issue…along with all the usual suspects in top form.

http://www.webwhispers.org/news/apr2007.asp

In September, Barb Stratton, Len Librizzi and I managed to slip one past Pat and publish a surprise tribute to “Wonder Woman”. Subterfuge has never been more fun. It was also a special issue because we had a letter from Colin Bolton about his trip to Bali and we were able, with the help of our talented webmaster, Len, to publish some great pictures. Since then, we have been including more and varied artwork and photos.

http://webwhispers.org/news/sep2007.asp

November 2007 includes a rousing night out with Rosalie Macrae and her boys as well as a tribute to the late Janet Sackman. She was the “Lucky Strike Girl” in the 50s and went on to become a visible and eloquent anti-smoking spokesperson.

http://www.webwhispers.org/news/nov2007.asp

Check out:

http://www.webwhispers.org/news/mar2008.asp

for part one of Sunny Bakken’s “Dancing With Ron”. It is a tender and honest account of the loss of her cherished laryngectomee husband the previous year. She continues to be involved with WW. Part 2 can be found at

http://www.webwhispers.org/news/may2008.asp

The following month, Diane Davis wrote about her own care-giver with that wry sense of humor and acceptance that only comes with time…it is a very good piece and guaranteed to make you chuckle in recognition. Plus, Debi Austin, Elizabeth, Rosalie, Pat, Lisa Proper/VoicePoints, Vicki and Pat.

http://webwhispers.org/news/apr2008.asp

2008 has a real eye-opener from Jack Henslee about his travels to Costa Rica and outreach efforts to larys in areas where services, supplies and support are scarce at best. He has since written several other articles for us about this important work.

http://www.webwhispers.org/news/may2008.asp

Continuing with Travel with Larys, check out Len Librizzi lounging on the “beach” in Antarctica! Find one of my personal favorites from Rosalie about the “Annual Meeting” of her local lary group and read the truly amazing story of Dave Greiwe’s mini-marathon milestone at

http://www.webwhispers.org/news/jun2008.asp

I keep trying to skip ahead a few months so this doesn’t get too tedious and each and every month, I find a treasure I just have to share. I am way past my deadline and this column has taken many hours longer than usual. I am reminded of when, as a little girl, I would be sent upstairs on a Saturday morning to clean my room. Inevitably there would a pile or two of books and just as inevitably, I would happen to open one up and start reading. My mother, becoming suspiciously aware of the lack of cleaning noises, would come to my room and find me, lost to the domestic world, book in hand with a vacuum cleaner as a backrest. I suspect more than one of you understands completely and I am hoping that perhaps you may find yourself opening a page or two from an old issue and forgetting your own chores.

There are a few more choice excerpts I might suggest. If you like gardening you should try some Paul Daniels - July, August and September of 2008. While you are in July, be sure to catch Avis Kaeselau’s “Pennies from Heaven”.

http://webwhispers.org/news/july2008.asp

We had Israeli artist Avraham Eilat showing and writing about his art and experiences starting in the November issue. I particularly liked his columns- they were challenging and provocative.

http://webwhispers.org/news/nov2008.asp

2009 started out promising with new writers, fresh perspectives. and a number of “old favorites” we had come to depend on. The last week of February was difficult. We learned that Rosalie had passed away- suddenly and unexpectedly, sitting at her computer, writing as usual. The February issue had her last column, “Our Bonny Bard” and something from me that generated a lot of response, “Feeding the Wolf”.

http://webwhispers.org/news/feb2009.asp

The April issue was outstanding, for a number of reasons. Rosalie’s daughter, Victoria Passingham sent us a lovely piece for “A Scottish Accent” about her Mum’s funeral and the memories she and her family (and that includes her WW friends) will always have of the irrepressible Rosalie. Avraham had an extraordinary article “God and the Mystery of Creation” - the artwork that accompanied it was stunning. I am sorry Ro missed it - she was a big fan of his. Elizabeth won the best title award for her column on ES speech called “Nice Putt or Nice Butt?” and we got a delightful “postcard” from Jack Jkac about what a difference a year makes. Part four of Mike Burton’s gritty saga of his journey, “From Me To You” continued with “You Can Drive My Car.” Pat threatened to stop reading newspapers and VoicePoints talked about lary travel tips.

http://www.webwhispers.org/news/apr2009.asp

June was notable for a terrific piece from Nell Davis of Texas about family reunions. Now THAT’S a cast of characters! Part Six of Mike Burton and a particularly good one from Vicki about the value of volunteering. See also Jack Henslee's “Voices Restored- Peru”.

http://webwhispers.org/news/jun2009.asp

I’ll cap off last year with our newest columnist, “The Speechless Poet”, Len. A Hynds. Len made his debut with us in October and he is a delight.

http://webwhispers.org/news/oct2009.asp

I have a little group of women friends who meet every few weeks for what we call “Whine and Wine”. It is our chance to really talk and gossip and connect. It is very therapeutic. It occurs to me that this WW is similar. Our daily email list is like texting. Perfect when you just need information. The forum is great when you need to chat and catch up. They both serve a very important purpose, but sometimes you need a little bit more. WotW is the conversation that happens over a special meal and a nice bottle among friends. Bon Appetit!

Donna

 

Find the tables of content for all Whispers on the Web issues at:

http://webwhispers.org/news/WotWIndex.asp

 

 

 

 


 

The Case of the Brown Egyptian Mouse

 

Owing to my reputation of being able to shoot my way out of trouble on a few occasions, for my last year in Egypt I was appointed the driver/bodyguard of the Assistant Provost Marshal, Canal South District. General Crocker, the Commander In Chief of Middle East Land Forces gave the APM an assignment one day, and we had just under three weeks to prepare for it.

In the Far East, the Royal Navy Frigate, Amythyst, had been sent up the long river Yangtse in China to rescue British personnel from an embassy, as the civil war between the Nationalists under Chiang Kai Chek, and the Communists under Mao Tse Tung was getting perilously close. The Amythyst had negotiated the long river and rescued the people, but the Communists had placed artillery on both banks for several hundred miles and the frigate was effectively trapped.

She fought her way down river, with guns firing at both banks, and the cruiser London was fighting her way up river to give fire support. Both warships made the safety of the South China Sea, but were extensively damaged. They were on their way back to England and a heroes' welcome. It was the APM's job to organise the regiments in Egypt to line the banks of the Suez Canal, in serried ranks, to cheer both ships through.

The site had been chosen, and a few days before the ships were due to steam through towards the Mediterranean Sea, I drove General Crocker in our car to review it. It was approved and we were on our way back to G.H.Q with me driving at about 70mph along the bleak and completely empty Canal Road, the two senior officers sitting in the back talking of the plans, with maps spread across their knees.

I suddenly saw a movement on the floor beside my foot. I glanced down but could see nothing. A few seconds later I felt the slightest touch on my bare knee, and glancing down, to my horror, I saw a small brown Egyptian mouse. He was calmly sitting there, washing his front paws and then his be-whiskered face.

I must explain. I have an innate horror of mice. It all stems from when I would arrive home from school, aged about 6, to find my mum standing on a chair because she had seen a mouse scuttling around that old house. She had probably been in that position for hours in a state of fear. No wonder I grew up to hate all vermin.

There he was, sitting there on my bare flesh, just smiling at me, the very epitome of evil. With one hand I swept him to the floor, whilst at the same time, slamming my foot on the brake, all thoughts of my very important passengers completely forgotten. The car screeched to a halt and my passengers were thrown into the air and then in a heap on the floor. I opened the door and the now terrified mouse leapt out, running up the road, with this mad monstrous red-cap chasing him and trying to hit him with the truncheon always kept under my seat.

It was only after the little beast had dived into the sand to get away from me, to avoid the heavy coshes, did I realise what I had done. I turned and looked back at the car and saw that in my mad braking, I had tipped the officers upside down. They were both on their knees, looking at me over the front seats in astonishment. All they had seen was me running up the road, striking it with a truncheon. They had not seen the mouse and thought the sun had got me; that I had gone ' Macnoon.'

I helped them out of the car, recovering hats and important papers, trying to think up some excuse for my behaviour, as my boss was almost apoplectic with me at giving the C in C the drive of his life. I had to tell the truth, and told them about the mouse. I finished up by confessing my fear of the wretched creatures. I could tell by their expressions that they were dumbfounded that the red-cap chosen to be the fearless bodyguard was actually scared of mice. I had destroyed my reputation in a few seconds.

As we resumed the journey, it would suddenly go quiet in the back, and I knew that they were looking at me and I am sure I heard suppressed sniggering like a couple of schoolboys. My embarrassment was complete.

On arrival at the marble steps at G.H.Q, the turbaned guards lowered their lances in salute, as I opened the door to the two officers and saluted. General Crocker took a few steps and then came back with a big smile on his face. He put his arm cross my shoulder, and slipped an Egyptian five pound note into my hand, saying, " It's worth that, Corporal, just to be able to repeat this in the officers mess." And now, too, was my misery complete.

A true story, folks. It made my nickname, the 'gunslinger of Suez' look a bit foolish.

 


OUR FOOTPRINTS IN THE SAND

By Len A. Hynds

Together we walked along the shore,
our foot-prints side by side.
Damp depressions, numbered four
aged quickly with the tide.

Through-out our days, it had been just so,
holding hands, as we went through life.
By my side, in highs and lows,
my ever-loving wife.

The children came, and then they went,
each one with love and pride,
but relentless waves, at us were spent,
all signs gone with the tide.

My love now walks, oh quite alone,
single foot-prints in the sand.
Sadly thinking, she's on her own,
but still I hold her hand.

 

Len A. Hynds
 

 

 

 

 

 

Wishing You a Hearty and Healthy Appetite for the New Year!

 

Let's start with: Diane's Hot Crab Dip

 

1 lb Fresh Crab meat, cleaned, break into bite sizes (can use canned crab but NOT fake)
8 oz. Soft Cream Cheese
1/2 c. Mayo
2T  Worcestershire
3-4 drops tabasco
3T grated onion
3T Lemon Juice (Meyer is great)
Cayenne Pepper to taste

Mix all ingredients in oven proof dish. Bake @ 350 until brown (about 25 min.) Serve with crackers. Alternatively you can stuff the hot crab into fresh sweet peppers, endive leaves, celery or make a hot sandwich with your favorite bread or rolls. I have also used this in a salad. Prepare crab dip. Place mixed baby greens on plate with cherry tomatoes, place hot crab in center. Garnish with candied walnuts.
(Diane Davis)

 

Sauerbraten, Bad Godesberger Art (Marinated Roast Beef, Bad Godesberg Style)

 

This is the BEST Sauerbraten God ever made!! Delicious and EASY, too!! Fork-tender, easy to chew, tart yet sweet, and MOIST!!

4 lb. Rump Roast (lean)
2 Tbs vegetable oil
1 Tsp salt
3 small carrots, thinly sliced
1/2 Tsp ground pepper
1/4 cup packed brown sugar
1 large onion - sliced
3 Tbs butter or margarine
2 1/2 - 3 cups red wine vinegar
3 Tbs all-purpose flour
2 1/2 - 3 cups water
1/2 cup seedless golden raisins
3 bay leaves
12 peppercorns
2 Tbs regular granulated sugar

Rub roast with salt and pepper... place in deep glass bowl. Arrange onion slices around and under roast. In a medium bowl, combine vinegar, water, bay leaves, peppercorns, and granulated sugar and mix well. Pour this over the beef and the onions. Cover bowl with plastic wrap and place it in the refrigerator. Marinate this roast for 4 DAYS… covered and turn twice a day. To prepare: Remove roast and pat dry. Strain the marinade into a medium bowl -- save all but the bay leaves. Heat 2 Tbs of vegetable oil in a skillet (med-high heat), then add the roast, searing it on all sides until browned (about 10 min). In a medium pan, place the onions and carrots .. sauté over medium heat until almost tender (about 10 min). Now pour the strained marinade in with the carrots and onions, add the brown sugar, and simmer over low heat for 10-15 minutes. Preheat oven to 350F. Place beef in a dutch oven (or covered baking dish). Pour the marinade, carrot, onion, and brown sugar mixture over the roast, cover and bake, fully covered, for 4 hours. Remove beef and slice for serving (keep slices warm). Again, strain the cooking juices...saving only the juices. Melt the butter/margarine in a small sauce pan and stir in the all-purpose flour with a whisk. Cook, stirring, until flour turns golden. Add strained marinade and raisins, simmering slowly until the marinade thickens. Arrange roast beef slices on serving dish or plate and ladle some of the hot marinade over the beef slices ... and serve. Accompany the Sauerbraten with mashed potatoes and a vegetable of your choice (Red Cabbage is great). The marinade sauce can be used as the potato gravy, too!!
(Dutch Helms)


British Sherry Trifle

 

Take one Jelly Roll and mash it in a large bowl, using a fork. Empty three packs of Strawberry Jello in a large jug and add 24 ounces of boiling water. The directions on package call for a further addition of 24 ounces of cold water. Ignore the directions. Add 8 ounces of cold water and 16 ounces of SHERRY. Add the Jello to the Jelly Roll and mix well. Place in the refrigerator and allow to set. Top with Cool Whip and sprinkles before serving. For a smaller version simply use one-third of the dry contents, 4 ounces of boiling water and 4 ounces of sherry. Delicious!!
(Frank Morgan)

 

Get a Chopper for Leftovers!

 

I prepared a delicious beef roast day before yesterday. Had left over sliced beef yesterday and was disappointed to find something that tasted so good could be so hard to chew up enough to eat the reasonable amount I wanted and it was tender beef!

For years, we have had the hint in our Library, under Food-Nutrition-Recipes about using a mini-chopper for people who have difficulty swallowing. The work I have had done by my dentist, who removed one molar and, on the other side, crowned another, left me with a lesser chewing, grinding, capability than I had previously.

Today I got into the back of the cabinet and got my old, but barely used, electric Black & Decker Mini-Processor. I sliced the beef, put strips into the processor and added a little of the clear gravy from the cooking. Not wanting to make it like a paste, I was careful about short bursts of power and then kind of shook it so the big pieces got to the blades. I didn't need to worry. I put this on a plate with left over veggies, covered it, and put it in the microwave for a couple of minutes. In the meantime, I found some Sweet Baby Ray's Bar-B-Q sauce made with Videlia Onions. It was perfect.

That processor will have a place of honor on my counter.

Pat Sanders

Recipes are from our Library:

http://webwhispers.org/library/food-nutrition-recipies.asp

 

 

 

 

 

 

Looking at the world - in a different way

 


“We are all different” is our much repeated mantra. Like many mantras, saying the words and understanding them are not the same thing.

Our differences are more than just what was removed, or not removed, in an operation. They are more than how much radiation or chemo we had or did not have. The differences go to the very essence of our individual perceptions of the world.

Each of us look at “reality” from an egocentric point of view. We know, or at least believe we know, our own reality. But, your reality may be a bit different from mine. We each have grown with different experiences which shape how we view the world and others.

Author/philosopher/psychiatrist Robert Anton Wilson uses the term “reality tunnel” to describe how people look at the world through the unique perspective of self. I think this is a very descriptive term. We all, to some extent have tunnel vision because we all perceive the outside world from individual experiences that differ for each of us.

We tend to think that our reality is the only reality, when there may be many differing realities that are equally valid. We just need to get out of the conceit of self.

A common example of differing reality tunnels can often be found in newspapers. When I lived in the Washington, D.C., area in the mid ‘80s, I would read articles in both the Washington Post (a rather liberal paper) and the Washington Times (a rather conservative paper) that reported the same political event. I often wondered if the reporters were at the same place at the same time. The reports were that different. The papers, like people, viewed the stories from their own reality tunnel.

So, what does this have to do with laryngectomee rehabilitation?

Many laryngectomees believe that what is true for them must be true for all laryngectomees. While not confined to them, this is often true of newbies. The laryngectomy experience is so new, and often, so overwhelming, that they do not realize that we all have many differences. They believe that problems that they encounter must also be shared by others. After all, they are experiencing the problem. This, however, is not necessarily the case. I may experience a leaking around my prosthesis due to the placement of the prosthesis or the elasticity (or lack of elasticity) of the tissue surrounding the prosthesis that you may never experience, due to different placement, different tissue health, the way I swallow or position my head when swallowing.

When reading other people’s problems, we need to be careful to not be convinced that, because that person has that problem, you will have it too. I have seen too many newbies state a fear of getting a prosthesis because someone else has had problems with theirs. We have an email list where people write when they have problems. You don't have many who write in daily that they are having another wonderful voice day with no problems and no leaks, because the list is where you write if you have problems.

This problem also spills over into the health care professional, especially one who does not deal with a large number of laryngectomees. The professional may believe that the small sample that he or she has encountered are, necessarily, representative of all. Again, the truth is probably 180 degrees from this belief. Different doctors will perform the operation in their own, unique, way. There will be many similarities and constants, but there will also be differences due to the individual(s) performing the operation.

A similar skewing may be true of professionals who see a fairly large number of patients, but who are not laryngectomees themselves. While they have their patients’ experiences to draw on, they are not living the life. They, also, are seeing small segments of their patients’ lives and hearing about some more, but not necessarily a significant amount more.

So, we need to keep in mind that “we are all different” is more than a mantra to recite by rote. It is a lesson that needs to be taken to heart so that we can expand our vision of the world beyond our individual tunnel.

Terry Duga
 

 

 

Welcome To Our New Members:

 

I would like to extend a "Warm Welcome" to our most recently accepted laryngectomees, caregivers, vendors, and professionals who have joined our WebWhispers community within this past month. There is a great wealth of knowledge and information to be accessed and obtained from our website, email lists, and newsletters. If ever there should be questions, concerns or suggestions, please feel free to submit them to us from the "Contacts" page of our website.

 

Thanks and best wishes to all,

 

Michael Csapo

VP Internet Activities

WebWhispers, Inc.

 
 

We welcome the 26 new members who joined us during December 2009:

 

Linda M. Barron - (Caregiver)
Granite City, IL
Brian Busby
Manawa, WI
Frank W. Carpenter
Matthews, NC
     
Tammy Deacy - (SLP)
Appleton, WI
Pamela S. Dunham
Florence, OR
Paul H. Frehner
San Carlos, CA
     
Gina Girt (SLP)
Meadville, PA
Charles Hadden
Marysville, CA
Janey Hill
Ashland, AL
     
Margaret Wilbanks-Jones-(Caregiver)
Dadeville, MO
Anna Kennedy
Mt. Sterling, OH
Keith Kenney
Decatur, IL
     
Paul Lampadius
Yorkville, IL
Jennifer Lundine - (SLP)
Columbus, OH
Dennis L. Martin
Graham, WA
     
Dianne Mortimer - (Caregiver)
Yukon, OK
Marty Mortimer
Yukon, OK
R.J. Myhal
Ontario, CAN
     
Nick Pergamalis
Key Largo, FL
Kristin Quilici - (Caregiver)
Yorkville, IL
Derrick Rice - (Caregiver)
Greenbrier, TN
     
Richard Rice
Greenbrier, TN
James E. Singleton
Canyon Lake, TX
Chester Sullivan
Pelham, NH
     
Kim Weisensee - (Caregiver)
Pelham, NH
Carlton Williams
Newtown Square, PA
 

 

 

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For newsletter questions, comments or contributions, please write to editor@webwhispers.org
           Managing Editor - Pat Wertz Sanders
           Editor - Donna McGary
           Webmaster - Len Librizzi
 

 

 

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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