March 2011

 


 

 

Name Of Column Author Title Article Type
News Views Pat Sanders Early Learning News & Events
VoicePoints Michael Trudeau PhD CCC/SLP Voice Prosthesis - Patient Training Education-Med
WebWhispers Columnist Dave Ross Support Group Survival Commentary
Between Friends Donna McGary On Snoring and New Friends Commentary
Travel With Larys Pat Sanders Going To Halifax Travel
The Speechless Poet Len A. Hynds Brothers Prose & Poetry
P.S. Rosalie Macrae P.S. from Rosalie Experience
New Members Listing Welcome News & Events

 

 

 

 

Early Learning Becomes Part of Us

 

As an adult woman, I met an interesting man that I dated for a few years. Intelligent, good company and likable to everyone. But put him behind the wheel of a car and he became silent and intense. I even wondered if he had a vision problem until he mentioned one day that he did not learn to drive a car until he was 37. I felt like I had run full tilt into a brick wall, trying to grasp how anyone with full intelligence and abilities could grow up without driving a car. Reason? He was from a city in NJ, had lived in the city proper and didn't have to learn. They didn't have a car. New Jersey... meet Alabama

A steering wheel grew out of my arm. It was as natural to me as having a hand to pick something up, to reach out and have your hand on the wheel of a car. When I was a kid, I played in cars, pretending to drive. I sat in my dad's lap and helped him drive. I officially learned to drive when I was 12 years old. I thought everybody did. We had moved to a little town in Arkansas for a year, where I, starting my first year of high school, was stuck with walking and riding the school bus. Then one day, Dad took me out in the car to teach me how to drive. Actually, his style was more to put me behind the wheel, watch me learn, and try not to laugh. Then to tell my uncle about it later so they could tease me about almost running some fellow off the road. They thought it was hilarious. I thought it was exciting. I had been living in the country in Alabama where cars were a part of our lives and you needed a car to go anywhere not walkable, so I had just sprouted wings.

On my 16th birthday, back in AL, Dad drove me to the Drivers License Bureau, where I tested, drove the car, and passed it to officially flap those wings.  It was a Rite of Passage.

A few years ago, I drove a friend of mine with advanced cancer to wherever she needed to go once or twice a week. It was no longer safe for her to drive and it was something I still do well so I had the pleasure of providing this service for her. Like driving Miss Daisy, I was driving Miss Kitty, who had a beautiful purring Lexus that was fun to drive and she trusted me with it completely.

How will I feel when I have to give up driving and depend on others as I have seen with so many. I will plan ahead, make my lists, and wait to be picked up. I will find things about it to enjoy. I will adapt to my clipped wings.

Just not today.

Enjoy,
Pat W Sanders
WebWhispers President
 

 

 

VoicePoints written by professionals 

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

 

                                         meaghan.benjamin@mac.com  

                 

 


Voice Prosthesis Care - Patient Training

 

The recent change in Medicare's reimbursement policy has refocused tracheoesophageal puncture (TEP) for voice restoration on the patient-inserted prostheses because neither the clinic nor the patient wishes to absorb the cost difference between Medicare’s fee schedule and the actual cost of clinician-inserted voice prostheses.

Lost in the lamentations over the change in reimbursement policy is the fact that for years laryngectomees who were properly trained were very successful in managing their prosthesis care in partnership with their Otolaryngologists and Speech-Language Pathologists. Foundational to success were patient selection (Some persons are simply not good candidates for TEP in general, or for patient-inserted prostheses in particular.) and patient training

.

This second point is the topic of this piece. In many respects training the laryngectomee in proper, safe care and use of the patient-inserted voice prosthesis is more demanding and complicated than is common now with the clinician-inserted devices. More rigorous therapy is required.

The term, laryngectomee, as used in the following materials is a collective noun referring to both the laryngectomee and, in many cases, to those family members and friends who participate to make care and use of the voice prosthesis successful in the home setting. The clinical caveat is that changes in the domestic environment may have drastic effects on a person's ability to manage prosthetic care without direct clinical assistance.

Due to space limitations, this piece does not address other very important aspects of overall rehabilitation, such as use of HMEs, hands-free speech, nutrition, etc.

What are the steps in training the laryngectomee and/or significant others in care of the patient-inserted voice prosthesis?
Primary therapy goals:
  • To participate in care and use of the voice prosthesis, the laryngectomee must have a basic understanding of the tracheoesophageal puncture procedure, in particular the role of the voice prosthesis.
    • The laryngectomee requires a basic understanding of TEP in general.
      • TEP re-establishes exhaled air as the driving force for speech.
      • TEP establishes a new source for voice, the upper esophageal sphincter replaces the vocal folds.
      • The creation of the TE fistula, while beneficial for speech/voice, creates two problems:
        • There is an open pathway from esophagus to trachea. Aspiration of food or fluid may result, which can be extremely detrimental to patient health.
        • If left unstented, the TE fistula is likely to spontaneously heal closed, depriving the patient of TE voice as a speech option.
        • The voice prosthesis is the solution to both these problems.
    • The laryngectomee requires a specific understanding of TEP as it relates to the individual laryngectomee. Laryngectomees share only two things in common: a history of cancer and laryngeal amputation. Both are life changing events; yet neither is the sum of the individual or of the family.
      • Any variation from typical, e.g., atypical placement/taping of strap due to unusual shape of stoma.
      • Rationale for selection of the specific voice prosthesis.
        • Valve
        • Diameter
        • Length
        • Any special features, e.g., use of gel cap
      • Variations in treatment, particularly as these may affect TE speech, e.g., reconstructive surgery, other surgeries to the head or neck, radiation therapy, etc.
    • The laryngectomee must be able to independently insert and remove a catheter or tracheoesophageal dilator into and from the tracheoesophageal fistula.
      • In general training should commence with a catheter or dilator because these are generally easier to insert than the voice prosthesis. Management of the voice prosthesis is entirely new to the laryngectomee. Early success with the catheter or dilator builds confidence. Persistent failure to master catheter/dilator insertion and removal informs the SLP of the laryngectomee's ability or inability to manage the prosthesis at home.
    • Training in competently inserting the catheter or dilator is of primary importance because these devices can stent the TEF in the event the laryngectomee cannot insert the voice prosthesis at home.
    • Setting should be designed so that the laryngectomee can observe the clinician remove and insert the appropriate device.
    • The setting should be designed to provide the laryngectomee with the clearest possible view of the TEF during training in removal and insertion by the laryngectomee.
    • The laryngectomee should practice this task under the supervision of the clinician until the clinician and laryngectomee are satisfied that the laryngectomee can perform this task independently in the home setting. If the laryngectomee cannot perform this task independently in the clinical setting, there is no reason to anticipate success in the home setting.
  • The laryngectomee must be able to independently remove and insert the voice prosthesis from and into the tracheoesophageal fistula.
    • Setting remains crucial to success.
    • The laryngectomee should practice this task under the supervision of the clinician until the clinician and laryngectomee are satisfied that the laryngectomee can perform this task independently in the home setting.
  • The laryngectomee must be able to identify when the voice prosthesis valve is deteriorating, particularly when aspiration has begun.

 

Secondary therapy goals:
  • The laryngectomee will be able to identify issues related to the fit of the voice prosthesis.
    • What does it look like when the voice prosthesis is in position correctly?
    • What does it feel like when the voice prosthesis is in position correctly?
    • Is there a difference in speech/voice when the voice prosthesis is in position correctly?
  • The laryngectomee will be able to order voice prostheses and other supplies as needed.
    • Have the correct prescriptions been provided to the appropriate venders as well as to the laryngectomee?
    • Does the laryngectomee know which venders to use for which supplies?

 

As noted earlier laryngectomees have been trained in safe, effective care and use of their voice prostheses for over 30 years. Little of a person’s life experience prepares the laryngectomee for prosthesis care. A primary reason for the success of the Singer-Blom procedure, however, is its simplicity. When therapy is properly designed and implemented the majority of laryngectomees can grasp the basic concepts of TE speech and can master the techniques needed to manage their prostheses. Clearly not all persons can self-manage their prostheses. Those who can safely use the patient-inserted devices accrue the benefits of decreased expense for both the prostheses and office visits, as well as the related decrease in time committed to the clinic as opposed to time devoted to life’s activities.

Michael D. Trudeau, PhD, CCC/SLP
Associate Professor
Dept. of Speech and Hearing Science
The Ohio State University
 

 

 

 

 

Support Group Survival

Dave Ross


Over the years there have been many posts about local clubs that, at one time, were active with new members coming in receiving help and support from older, experienced, larys. But then, for various reasons, not always understood, the interests and involvement of the members seemed to just go by the wayside and the club would end up declining into oblivion.

By no stretch of imagination am I an expert on organizing and maintaining an active membership for any group. I will, however, for what it may be worth, express a few thoughts that might get some folks thinking and stir up a little effort. This comes to mind because of the decrease in IAL club membership, much of which is a result of clubs being disbanded. May I suggest the durability of your club be a matter of discussion?

 

Why are we not able to get and keep active clubs?

First, we need to realize that a great number of folks are simply not “joiners”, do not particularly care to have people outside their immediate ring of family and friends involved in their personal lives. Many are perfectly happy and contented with their life “as is” and don’t feel the need or desire to have others involved. This is not a rejection of the efforts of those of us that are willing to support and assist, so we must not be disgruntled by those not accepting the offer to “join” or be an “active” member.

Second, I think it is essential to “manage” a club in a manner that “fits” the personalities and needs of the members. A pre-established mode of operations may not set well with the members. Of the members that are not happy with the way things are being done, most will simply quit attending meetings and will not confront the leadership. They will simply cease participating. As the saying goes, “different strokes for different folks,” and a club’s membership potential will definitely be made up of “different” folks whose needs must be met.

Third, I suspect today’s amazing availability of information via the internet is a factor in the decline. Unfortunately, this “ocean of instant information” can not provide the one-on-one personal interaction available through local club associations and to this point it seems essential that “management” recognize and promote the personal interfacing of the club’s membership.

In my opinion, there are three distinct elements of a successful club. The correct mix depends on the desires and needs of the membership.:

1) Socializing
2) Lary to Lary support and education
3) Professional input

If there are no new larys or new problems to address, then the socializing element becomes more important. This can change on a month to month basis and the club’s programs need to be adjusted accordingly. Perhaps most important is the manner in which the club is “managed”. Do most members want a “regulated” meeting format that is run in accordance with Robert’s Rules of Order or do they prefer to have a casual approach to their affairs, open to questions and answers? This element will vary with the changeover of members so that re-appraisals of your methods are appropriate.

The professional involvement can be of great value for new members as well as keeping the seasoned members current on new products and procedures. Many clubs, unfortunately, do not have ready access to knowledgeable professionals. Others do not take advantage of the access they have through clinics and hospitals. This requires a conscious, concerted effort of the club membership that starts with educating and soliciting the assistance of the area’s Laryngectomee Medical community.

The long term viability of any organization, and especially one such as a cancer support group, requires the continuous influx of new members. Not only are new members the primary reason for a support group’s existence, they also provide the life blood of new ideas, outlooks and personalities and give the seasoned larys a reason to stay up to date, participate and feel the gratification that comes from helping others.

But make no mistake about it, new members will come only if they know of the club and are invited. They will stay only if made to feel welcomed and encouraged to participate.

Dave
 

 

 

 

 

On Snoring and New Friends

 

My mother is a lovely and accomplished woman, but we have had our differences over the years and…suffice it to say, when I asked if she might be interested in taking a WW Panama Cruise with me, there was some trepidation on both our parts. My dad, the old Navy guy, gets sea sick these days and so it was Mom and I off to Galveston and points South for some quality bonding time.

It was December of 2004 and I was only just starting to get back to myself after my run-in with throat cancer and treatment complications from 2000. It had been a rough four years for all of us. I had recently acquired a Servox and loved finally having a reliable voice after all that time. This was a good time for all of us.

I learned about WW through Libby Fitzgerald who had the same odd ball cancer as I did, in the same place, just a few years earlier. If I hadn’t “met” Libby via an internet search on Adenoid Cystic Carcinoma and discovered the ACC website, I never would have driven to Connecticut that weekend in 2002 to meet the ACC support group. Libby was the first person I ever met who sounded the way I did. In those days I could still occlude and use the bare remnants of my vocal cords. She suggested I check out WebWhispers, but since I still thought I would get "all better" eventually, I put it on the back burner.

After many more unsuccessful procedures and way too much prednisone, I accepted the Servox and joined WW. I am so glad I did. My situation is a bit different; many of the list discussions about common lary issues just don’t apply, but the friends I have made are priceless…which brings us back to the cruise.

Mom and I checked into this pretty grim motel the night before we left from Galveston. I was feeling anxious until we discovered a whole slew of WW cruisers who introduced themselves as I tried to discreetly check in. Using a Servox is a pretty good giveaway! They were all in the front lobby watching for their friends. Libby and her husband, John, showed up a little later so that was at least two familiar faces. I met Len Librizzi that night and he gave Mom & me directions to a restaurant for dinner. I was mortified when I couldn’t understand him. Len uses a Servox, as I do, but it was the first time I had ever heard anyone else use one and I remember thinking, is that what I sound like?

Mom was great. Well, except that she has NO sense of direction so Len’s directions became sort of vague guidelines and it took us a while to find the place. It turned out to have great oyster po’boys and the WW crew showed up later. Pat came over to our table and introduced herself and later the “gang” and we began to feel we would do just fine.

I won’t bore you with all the details about getting on the ship. It was my first cruise so it was all new and exciting. Mom had been on several cruises so she was a bit more blasé. One thing she was not blasé about was the sleeping issue. Mom needs her sleep and gets cranky when she doesn’t get it, something she freely admits. At that time, I still had a terrible chronic cough, probably as a result of the radiation. I had only recently weaned myself off a codeine cough syrup and still had terrible coughing spasms. Mom was worried, as was I, that my coughing might keep her awake in our shared cabin. She brought extra heavy duty ear-plugs for just such a problem. I am so glad she did. More about that later.

The first night at sea we were seated at a table with six other people, new to us but all associated with WW and by the end of the cruise my mother and I had made life-long friends. My first impression was that of Linda and Miguel arriving. Perhaps a bit late, but they were so stylish. I loved Miguel in his Panama style hat and white suit. Linda sat next to me and as we started to chat we knew immediately that it was friendship at first sight! Linda, Miguel and I have continued that friendship, meeting at IAL meetings in Chicago and San Francisco. I spent a week with them in Cabo last winter and this fall we are all taking the WW cruise together. We will meet my folks in Portland for our day there, since Linda and Miguel are very fond of Mom and want to meet my Dad.

Mom sat next to Len on our PC cruise and we learned that his wife, who was unable to be on that trip because of her work, had just been diagnosed with diabetes. Mom was also diagnosed with Type ll at age 60 and had successfully managed it with diet and exercise for many years. She had also facilitated support groups and written a cookbook for the American Diabetes Association. Plus Mom LOVES a project. So she and Len bonded as she became a wealth of information for him and MaryAnn, and he helped her understand more about larys. We even met them the following year when they came to Portland on the WW New England/Canada cruise in 2005; which, incidentally, is the same cruise WW is taking this September.

Our third stop on the PC cruise was in Mexico and I took a day trip off the ship to the Mayan Ruins at Chechen. That’s where I spent some time with Pat...and my fate was sealed. She figured out during our bus ride back that I liked to write and shrewdly gave me a forum, for which I will always be grateful. I had always dabbled in writing, but she gave me an opportunity to actually practice and exercise some discipline. It’s been six years now and I have missed only a few columns. I’ve even had a few that were pretty good, if I do say so myself. I learned that trip that Pat is very good at getting what she wants (she is always looking for “talent”) but has a way of not letting you realize, until it’s too late, that you’ve been shanghaied!!

I also had a chance to meet Dutch, our founder. It was his last WW cruise, as his cancer returned shortly thereafter. Nevertheless, we all had one memorable afternoon when, due to rough seas, we were unable to disembark in Jamaica, so drinks were free for a couple of hours that afternoon. Talk about a mob scene! Terry Duga, Dutch, Len, Mom & I were all battling our way to belly up to the bar and snagging two at a time. Now I can’t vouch for the guys but I know for sure that was a first for Mom. She definitely liked those fresh strawberry daiquiris, even if she did take a nap before dinner that day.

I would love to go back to Costa Rica sometime and really get a chance to explore that beautiful country. Panama was fascinating and going through the canal was a truly amazing experience. Our ship was the largest possible vessel able to navigate the locks. At times, you could have reached out your window and touched the walls. As much as I loved all the different stops, you really don’t have a lot of time to explore any one place, but cruising, at least on the big ships, is a great way to get a taste of the region and maybe identify some spots you want to come back to with more time.

Cruising is also a wonderful way to travel with a group since it allows everyone time and opportunity to pursue individual interests and still be together. And as everyone knows, the food is fabulous, the amenities numerous and service, outstanding. One morning I got up very early and watched the sunrise out over the ocean. It was truly lovely. The food court was just opening so the spectacular breakfast buffet was not out yet, but there was coffee, tea, juice and a nice array of pastries. There was not, however, any Earl Grey, which is my tea of choice and I don’t drink coffee. I was rifling through the tea selections and must have looked perturbed since one of the staff came over and asked if I found everything I wanted. I asked if there was a chance they might have Earl Grey? No problem, soon I had several envelopes of Earl Grey and subsequent mornings there was always Earl Grey in the tea caddie and if she spotted me, she would come over to make sure I had found my tea!

Generally speaking, I am not an early riser. But I love the ocean and being out on the water, where those warm moist tropical breezes was balm to both my airway and my soul. However there was a more prosaic reason to get up with the sun. Perhaps you are a careful reader and remember those earplugs I mentioned earlier. Well, as it turns out, it was not my mother’s sleep that was disrupted by my coughing. It was my sleep…by my mother’s symphonic snoring. Now over the years my father has made affectionate reference to Mom’s snufflings, which she, of course, always denied. I am here to tell you, that given the range, resonance and astonishing variety of Mom’s “snufflings”, Dad may have just gone deaf in self-defense. I actually sat up in my bed several times to look and listen in amazement at the rich musicality of my mother’s snores. As extraordinary as they were, no one could sleep through that without heavy-duty earplugs. I finally broke down after the third or so night (keep in mind this was a 12 day cruise) and confessed that I needed the earplugs more than she. As I described to her my amazement at her nocturnal vocalizations, we both began to laugh so hard we cried. It was actually a wonderful moment and her symphonic snoring is now a well-established story in our family. My dad says he was worried at first, when I told him, that she would be embarrassed, but when she started telling all their friends after she got back and laughing so much about the whole thing, he realized snoring had brought us closer together. Who knew?

I am going to visit them in Florida in a couple of weeks. I will sleep out on the lanai and drift off as I listen to the “snuffles” emanating from a couple who have spent over 60 years perfecting their own symphonic snores. Music to my ears.

 

 

 

 


 

GOING TO HALIFAX

 

We will be on our 11th WebWhispers Cruise this year on Royal Caribbean's Explorer of the Seas. We were on a sister ship on an earlier cruise and I loved the Royal Promenade going right up the middle of the ship with staterooms overlooking the "street". This time, I am going to stay in one of those staterooms. Not only are they reasonably priced but I think it will be fun. I found this ship had much to offer in the way of unusual things in which to participate or watch. You would never catch me climbing a Rock Wall 200 feet above the ocean but it is fascinating to watch others do it while leaning on a rail in the open air or rearing back in a deck chair.

The ice skating rink has a surprisingly good ice show and the massive size of the ship allows a good sized skating rink inside for inline skating but that's not all. If you want to play basketball, they have a full sized court! There is a nine hole miniature golf course and a golf simulator. And, yes, there is a casino for the other kind of play or a spa and fitness center if you are serious about working off the food you eat on board.

This ship has a Johnny Rockets for the best in burgers plus other cafes have sandwiches, pizzas and, of course some of the best buffets you have ever eaten, with other meals being served in the gorgeous dining rooms. There is the huge theatre, with nightly shows, and more lounges than I could count with other entertainment!

The itinerary is superb:

Portland, Maine: The thing I remember about touring there is the $5 all day bus ticket, so you could get around town, off and back on the buses to see the sites or shop. A highlight for me was the Longfellow House along the way.

Bar Harbor, Maine: We took a bus tour up to Cadillac mountain in the Acadia National Park to view the beautiful coastline and the rest of the time walked around this delightful seaside town with fantastic shops (t-shirts at great prices!). I have been wanting to go back to this quaint and charming town.

Saint John, New Brunswick: Founded by Loyalists escaping the Revolutionary War in 1785, Saint John has emerged as a thriving port city. Went for a boat ride to see "Reversing Falls Rapids, Saint John's best-known attraction. Twice daily the powerful tides of the Bay of Fundy rise faster than the river can empty. When this happens, the tide attempts to push the river back upstream, then the tide ebbs and the river appears to reverse itself and flow over the rocks, creating the appearance of reversing rapids."

Halifax, Nova Scotia: They advertise, "One of the city's most attractive areas is the Historic Properties Development, located along the waterfront. The charming early 19th-century wood and stone buildings here have all been fully restored." I was fascinated by the architecture and the restoration work they were doing. I walked all around there with camera but did not go on a tour there. Likely will this time.

Boston, Massachusetts: We were based in Boston the year we made this trip so did our touring from the hotel that year and it was all interesting -- walking, by bus, by boat and by trolley. It is beautiful and you will leave wanting more.

All information about reservations and pricing is at:
http://webwhispers.org/activities/2011Canada-NewEngland.asp

There is still time to join us.

Pat Sanders

See 2 pages of pictures from our previous Can/NE cruise to these ports:

http://webwhispers.org/activities/cruise/2005CruisePix_1.htm

 

 

 

 


 

Brothers



It was in the year 1944, and we had been at war with Germany since 1939. It would not end until May of the following year, when finally defeated, that country sank to its knees. Very few countries had not been involved, and everywhere had suffered extensive damage, with nearly 55 million people being killed by the end of the war and an untold number injured.

It had been a long hard struggle, but we never doubted that we would win in the end. Every member of my family were involved in this struggle for survival. My father, deaf from the First World War, doing the work of three men. My mother, a nurse, tending wounded soldiers, my eldest sister making shell cases; another in the Red Cross looking after orphans and the youngest sister driving an army ambulance conveying the dead and wounded.

My eldest brother was a prisoner of war in Poland; another taking ammunition convoys to the Canadian front line troops in Holland, whilst yet another was serving on Destroyers fighting the Japanese in the Pacific. We had lost three homes through the constant bombing, and had lived on a near-starvation diet for several years.

By lying about my age (telling them I was 15), I had donned the King’s uniform in 1942. I had served in three cadet units that were attached to artillery and infantry regiments, and was now a Cadet Sergeant, with lots of practical experience in shooting at the enemy and trying to kill him. All in all I was a very bloodthirsty young man, but my constant training and experiences had made me like this.

Having set the scene for you, I must relate the strangest Christmas Day in my life. Mum had time off to cook a Christmas dinner for just three of us. Nothing so magnificent as a turkey or chicken ( probably horsemeat disguised as something else) when my sister Kit ran in saying that she had her ambulance outside and was conveying a previously wounded German soldier from a military hospital to a prisoner of war camp. Mum insisted that she stop for tea and to bring in the German soldier and his guard as well.

I was horrified at the thought 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 to kill the enemy on sight, as he had been, 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 thoughts 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, anyway, and I was astonished at how young he was, not a lot older than me! He was wearing this strange uniform and had apparently been captured on our drive towards Arnhem. In fact, he looked an awful lot like my brother Alf, the sailor.

He could speak English and Mum made a fuss of him, giving him large slices of our Christmas cake, the ingredients of which she had been hoarding for some time, and not to be eaten until later that day. He could not understand my mother and sister being so naturally kind to him, although I kept my distance, deliberately avoiding any conversation.

Mum got him speaking of his own mother and he spoke of how the Russian advance was getting very close to her and he was so worried about her. 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, too, had been indoctrinated from about the age of twelve to kill the enemy on sight and he really was a mirror of myself. I found myself astonished that the hated enemy could have a mother he worried about and brothers and sisters.

He was obviously overcome with emotion at these strange English people who were treating him as one of their own and who seemed to have forgotten all those dreadful war years. I thought he had tears in his eyes when, as they stood up to go, Mum held his hand and patted it, as only a mother can, and wished him well.

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 of the whole nation.

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 brother's, I instinctively knew that there was empathy between us and the meeting had been a revelation to us both.

 

 

 

 

 

P.S. from Rosalie

Rosalie Macrae, a laryngectomy since Jan 2005, started a Whispers on the Web column in Sept. 2006, called "A Scottish Accent". Rosalie was a journalist from the Scottish Highlands, living in Colchester, the oldest recorded town in Britain. She wrote 29 columns for us. Her daughter wrote after her death: "My mum had a lust for life and thirst for knowledge which made her never boring and always inspirational. She was a real character and a very special lady, and it seems this came across loud and clear on WebWhispers."

 

So for those who who came to us over the last several years, you are in for a treat as we republish some columns or excerpts. To introduce you here is a delightful excerpt from November 2006.

Meringues

Meringues are ideal puddings for messy post-laryngectomee eaters like myself. They just melt in the mouth and are not going to suddenly erupt, like the deadly sticky toffee pudding. Or lentil soup which we won’t even start thinking about.

Today I found myself surrounded by cup cakes. Hundreds of them. Pale ones, burnt ones, chocolate ones, ghastly pink and even black ones, made by the boys -- no sexism here -- at a local school where a Chinese professor was talking about the role of his country in the 21st century. The boys had thought he would like cup cakes with dry sherry after his speech, and they were simple to make but, for me, not so easy to eat. Virtually impossible really without losing face.

I cornered the delightful Professor Wei after his speech to ask him about the state of laryngectomy in China, it being a country where babies are sometimes puffing before walking. I made that bit up, Professor. Anyway, while considering his answer he passed me one of these pink cup cakes on a willow-patterned plate, probably loaned by someone’s mother, I expect, as the rest of us were handed white canteen ones. I felt he didn’t really want this cake, as it was nearly dim-sum time, and was cunningly downloading to me in the guise of Oriental courtesy.

Now cup cakes are not ideal for a ladylike lary because they stick around your gums, and when you are standing up clutching your EL and a sheaf of papers about modern China, and trying to make clear lip moves, it’s impossible not to know that you have a bridesmaid-pink sludgy coating over the teeth.

But the professor, bless him, didn’t reel back, and said that, in fact, a distant female cousin had undergone the same operation in Beijing and was back at work teaching piano. I said it was lucky she wasn’t teaching singing and he giggled and offered me another cup cake.

Talking of China, and I do apologise to any Chinese readers. Every nation has its funny little ways. Nothing personal. But a lady from Shanghai who runs a local carryout was telling me that they moved to Britain because of her eldest son, now 20, a champion swimmer and born blind. "In China they are rude to people who are different and used to crowd around pointing at him eating because he was blind and sometimes spilled when he was a little boy. Here they are more polite."

They would have had a ball in Shanghai watching--and hearing our laryngectomee group having a meal the other night. It would have been even more audience friendly if we’d used chopsticks. Not a requirement in ye olde terrible overcooked roast beef section in the local King’s Head, which is the most popular name for pubs and hotels dating back to the quaint old practice of hanging up the heads on London Bridge to show what happened to naughty royals.

The entire article may be found at:
http://webwhispers.org/news/nov2006.asp

 

 

 

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 28 new members who joined us during February 2011:

 

Louis (Louie) Adler
Newhall, CA
Sandy Blom
Abbotsford, CAN
Vickie Cole
League City, TX
     
Joe Corbi
Buffalo, NY
Alexander Cuddeback
Mansfield, MA
Bill Field - (Vendor)
Carmel, IN
     
Bill Graham
Commerce, OK
Barbara Grubb
Rural Retreat, VA
Julius Horowitz
Cape Town, S. Africa
     
Wayne Hughes
Molena, GA
Kathy Johnson
Wheeling, IL
Gordon Kellogg
Decatur, GA
     
Richard Kotoff
San Rafael, CA
Mary Lui - (Caregiver)
Beavercreek, OH
Roger Mackenzie
Haverhill, MA
     
Kate McDaniel - (SLP)
Spartanburg, SC
Rhodney Montague
Raleigh, NC
Maggie Mork - (SLP)
Marion, VA
     
Kara Mosesso - (Nurse Practitioner)
Boston, MA
Harold Moulton
Spencer, MA
Buzz Ohlrich
Koloa, Kauai, HI
     
Ginny Olff - (Social Worker)
Marietta, OH
Erika Ortega - (SLP)
Wayne, NJ
Denise Simrany - (Caregiver)
Pleasant Valley, NY
     
Mark Swenson
Salina, KS
David Valentine
Macclenny, FL
Vickie Warden - (Caregiver)
Cambridge, OH
     
Diana Williams
Citrus Heights, CA
   

 

 

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
           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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