February 2010

 


 

 

Name Of Column Author Title Article Type
News Views Pat Sanders Review: Cooking With Cancer News & Events
VoicePoints Andrew D. Palmer, MS, CCC-SLP Swallowing Problems Education-Med
Between Friends Donna McGary Hope & Human Resilience Commentary
Practically Speaking Elizabeth Finchem It Took A Village Education
Ramblings Of A Loopy Lary Mike Burton Care From A Caregiver Experience
The Speechless Poet Len A Hynds Valentine's Day Poetry
Tidbits Of Interest Pat Sanders More Comments On Food News & Events
Editor's Mailbox Len Librizzi COPD Support Group Commentary
P.S. Terry Duga Patience Is Needed Commentary
New Members Listing Welcome News & Events

 

 

 

 

Review: Cooking with Cancer

 

I was fortunate a few years ago to be able to attend a lecture by Dr. Lous F. Pineda and thus learn about his avid pursuit of good natural foods that would help cancer patients, not just with nutrients in the foods but, with special ways of cooking and serving that would enhance or stimulate taste and smell. I just listened to him again last week. Fascinating!

Dr. Pineda, oncologist of 26 years, has worked with many chemo/radiation patients as they went through their treatments to heal side effects and of particular interest to us, to provide improvements in healing of the mouth, mucositis and mouth inflammation. His training at Culinard Institute combined with his experience as an oncologist, has provided this man with a fascinating goal and a curious mind about how we, the patient, can have a better experience with the aspect of taste, smell and digestion during or after cancer treatments.

During his speech, Doctor Pineda described a dish he has used for dry mouth and to stimulate taste. He used plain gelatin and added a pinch of salt, which draws moisture, then mixed it. Before it jelled, he added lemon oil, stirred and let it set. He gets the oil at one of the importing stores like World Bazaar. He said they have a whole set of flavors like lime and orange (which can also be used this way). I asked questions and the way I understand it, this would be a side dish to take a bite, let it moisturize your mouth and then the lemon oil almost burst with flavor ... and then you will be able to experience and taste your regular food again.

If you eat one flavor of food, bite after bite, you lose your ability to taste it. Variety is the key and putting different foods together that have totally, sometimes sharply, different flavors. The doctor loves and believes in peppers and there is a great deal of difference between the varieties..Under Education on his website, there is a chart as well as other information.

There is a website, http://cookingwithcancer.org/index.html , where you may look at pictures of the foods and read the recipes. Click Recipes across the top of his page to make choices.

In addition, if you have time to download and watch some videos of programs on his website they have used on "For The Health of It", you will enjoy and learn!

http://cookingwithcancer.org/videos.asp

 

Enjoy,
Pat W Sanders
WebWhispers President
 

 

 

VoicePoints written by professionals 

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

 

                                         meaghan.benjamin@mac.com  

                 

 


Swallowing Problems

after Laryngectomy and Laryngopharyngectomy:

Myth and Reality

Andrew D. Palmer, MS, CCC-SLP

 

Traditionally it was believed that swallowing problems after laryngectomy were relatively rare or even non-existent. Today, however, I think we have to revise this belief. How did this belief come about and why is it still pretty prevalent today? There are several reasons, I think.

First, as most of us who saw patients in the era when primary total laryngectomy was the norm well known, in the “olden days” many patients would return to a normal diet quite quickly after surgery. Nowadays, in the era of chemoradiation, salvage laryngectomy and complex reconstruction, dysphagia is more common.

Second, there are many people who equate “dysphagia” with “aspiration” and in a population that was thought to be unable to aspirate, little attention was devoted to looking for other swallowing problems.

Third, there is a general tendency in some groups to under-report problems (or what I like to call the “How’s it going?” “Fine, Doc!” phenomenon). If you don’t ask good, follow-up questions, the problem goes unnoticed. There are a number of reasons that patients who have had cancer don’t report problems – sometimes it’s a reluctance to be examined, prodded, and probed any further; sometimes it’s a fear that the cancer has come back (a very real fear in anyone who has gone through cancer treatment) and sometimes it’s a general resignation to the belief that “nothing can be done” and “I just have to live with it.” In some cases, the last assumption may be life-threatening. Some patients may struggle with dysphagia for many months, lose weight, and finally be at-risk for failure to thrive, before the problem is identified. Sadly, this situation is more common than it should be and may be fatal when a simple dilation was all that was required. Many patients are unaware of the fact that strictures can occur due to surgery, radiation, GERD, and other causes, even years after their surgery, and may be benign and treatable – and so, I repeatedly tell my patients to be proactive about reporting changes in their eating, swallowing or diet.

Dysphagia refers to any problem from placement of food or liquid in the mouth to its arrival in the stomach. Prior to surgery, as many as half of all individuals experience dysphagia due to choking, difficulty initiating a swallow, or an obstruction and, as a result, many will have modified their diet or experienced weight-loss. In the short-term period after surgery all patients require alternative nutrition due to the effects of surgery. For many patients, a short healing period will be envisaged and a nasogastric feeding-tube will be sufficient. When healed and cleared to initiate an oral diet, most will eat a modified diet due to the effects of pain, swelling and physical alterations.

For most patients, liquids and purees are the easiest textures to begin with and they gradually progress to solid foods. One of the main issues that can delay a return to an oral diet is the presence of a fistula, or an area of wound breakdown. This may be seen radiographically or may be seen as an area of drainage or leakage clinically if it occurs in the neck (a pharyngocutaneous fistula). In some cases, an unwanted tracheoesophageal TE fistula may be obvious – but in some cases it can be quite subtle and only located when the patient’s respiratory status continues to worse than predicted. When a fistula is present, the patient must usually remain entirely NPO until healed. Most fistulas heal spontaneously but the process can take many weeks, particularly in individuals whose health status is compromised at baseline or those who have had radiation and chemotherapy previously. When healing does not occur spontaneously, reconstructive surgery may be required. Thus, it is not quite true to say that “laryngectomees cannot aspirate” as an unidentified TE fistula or a leaking tracheoesophageal prosthesis (TEP) may both cause aspiration in this population.

Once healing issues are resolved most patients make progress towards a normal diet, although the rate may vary. By 6 months after surgery, just over half of all individuals are able to eat a normal diet. Improvements in eating ability are noted to continue at long-term follow-up but residual deficits in eating, diet, taste and saliva production are not uncommon for some individuals. It is worth remembering that individuals who have had a laryngectomy have many of the same difficulties due to radiation treatment and chemotherapy that other head-and-neck cancer patients experience. As we well know, radiation treatment may cause dysphagia due to reductions in the ability to chew, taste and/or swallow as a result of reduced saliva production, swelling, muscle weakness, or oral pain due to mucositis. Thus, all of the same treatment and management techniques that can be used for these problems in other patients can also be used after laryngectomy.

When dysphagia persists, further work-up is indicated. Objective studies have demonstrated that post-operative dysphagia may be caused by a number of problems. In some cases an obstruction to the passage of the bolus may occur due to a cricopharyngeal spasm, a stricture, or a pseudoepiglottis. Cricopharyngeal spasm is more commonly a problem for esophageal and tracheoesophageal (TE) speech than for swallowing but, when this is a problem, it can be treated with either a Botox injection or a myotomy. Strictures may be dilated in order to improve a patient’s dysphagia symptoms. Some individuals may require a series of dilations in order to open the strictured segment to the point where food transits more easily and many patients with strictures require periodic dilations for symptom-control. In most cases the patient will be able to identify when another dilation is indicated due to feelings of pharyngeal residue and obstruction for foods or pills. If frequent dilations are required, some individuals may successfully manage this problem with self-dilation at home. Finally, a pseudoepiglottis may be seen as a flap of tissue in the area of the base of tongue which may cause retention of the bolus. This issue can be managed in a similar manner to a Zenker’s diverticulum with a surgical resection, causing a reduction in pooling and retention symptoms.

In individuals who have undergone partial or total removal of the pharynx in addition to total laryngectomy (i.e. laryngopharyngectomy) dysphagia is more common. Individuals who have undergone partial reconstruction with some type of free flap have reduced driving force for the swallow as pharyngeal contraction is absent in the reconstructed area. Individuals who have undergone total laryngopharyngectomy must rely on base of tongue retraction and gravity to provide all of the driving force for the swallow.

Fred McConnel published a number of studies on swallowing after laryngectomy and noted that individuals learn to generate increased base of tongue pressures to compensate for the absence of laryngeal elevation during swallowing. In individuals who have undergone jejunal interposition, where a section of the bowel is removed and used as a “circular tube” to replace the entire pharynx, those who swallow most successfully after surgery are those who have good tongue mobility and in whom there is no peristaltic motion of the jejunum. The jejunum, like cardiac muscle, is “hard-wired” to perform its muscular action but peristalsis in this area frequently impedes passage of the bolus as it is usually mis-timed with action of swallowing. Unfortunately, there is no surgical solution for this problem (although post-operative radiation may decrease peristalsis, if it occurs) and thus those individuals who have tongue weakness and peristalsis of the neopharynx may have significant dysphagia. Strictures at the level where the jejunum is sutured to the native esophagus are also common.

Problems with esophageal dysphagia are also common after laryngectomy, for a number of reasons, and may require management. Impaired esophageal transit may occur as a result of laryngectomy, radiation treatment and/or the natural aging process and frequently cause symptoms of GERD and regurgitation after eating. Behavioral management strategies such as alternating liquids and solids to assist with transit, remaining upright during and after meals, eating smaller meals more often, not bending over after meals, avoiding eating before bedtime and naps, and walking after mealtimes may be helpful. Many individuals take GERD medications and may benefit from behavioral GERD strategies. Individuals who have had a partial or total esophagectomy in addition to a laryngectomy with a gastric pull-up are particularly prone to these problems. In addition to problems with regurgitation, they may have difficulty meeting their nutritional needs due to the change in the function of the stomach and should meet with a dietician. “Dumping syndrome” may occur in this population, which is characterized by frequent diarrhea due to difficulties with digestion and should be managed by the medical team.

As we well know, dysphagia is a problem which can have profound effects on a person’s social and emotional life. Eating is central to many social occasions, holidays and religious observances. It is not surprising then, that feelings of disability, handicap and distress are noted to be higher in laryngectomees with dysphagia than those without. Moreover, since the speech and swallowing mechanisms are often identical after laryngectomy, swallowing problems frequently correlate with difficulties in speech and voice, particularly in esophageal and TE speakers. Thus both voice and swallowing may be improved as a result of a successful solution.

In conclusion, treatment of dysphagia is typically multidisciplinary and may include an otolaryngologist, gastroenterologist, dentist, dietician, and a speech pathologist. Current treatments include those that are non-surgical, such as compensatory maneuvers, behavioral strategies, and tongue-strengthening exercises. Medical management includes treatment of GERD-related symptoms and xerostomia. Surgical interventions include a myotomy, neurectomy or Botox injection for a cricopharyngeal spasm or dilation for a stricture of the esophagus. Accurate diagnosis of the nature of the disorder is key to appropriate treatment and management.

Andrew D. Palmer, MS, CCC-SLP
Northwest Clinic for Voice & Swallowing,
Oregon Health & Science University, Portland, Oregon
 

 


 

 

 

Hope and Human Resilience

 


111, 800 was the official death toll in Haiti as I wrote this on Saturday, January 23. That is in a country roughly the size of Maryland with an estimated population in 2009 of 9 million. To put that in perspective, the US has a population of just over 305 million. Percentage wise that would be equal to nearly 3.8 million American deaths, the populations of Maine, New Hampshire and Rhode Island combined. This doesn’t count all the maimed and orphaned in a country which was already so impoverished. Devastation on that level is just unfathomable to me. Certainly there have been other natural disasters in recent memory with even more horrific numbers. The 2004 Indian Ocean tsunami, with a death toll of over 200,000 comes to mind, but there are more. I just Googled “Recent Natural Disasters” and I am suddenly very thankful that my most pressing worry is raking the edge of my roof to minimize icicles.


Although icicles can get quite lethal looking and they hurt like hell if you whack them off and they land on your foot or, worse, your head, they are not, generally, life threatening. Earthquakes, volcanoes and tsunamis are not something we worry about here in Maine. We do have some pretty fierce winter storms, but mostly we just lose power for a few days, not lives.


I have two favorite memories of such storms- nearly fifty years apart. The first was as a very young girl during a nor’easter when my mother woke me from my bed to bring me downstairs by the fireplace. We had a huge willow tree next to the house and the creaking branches in the ice and snow made my parents nervous. We made popcorn and hot chocolate and my mother took coffee out to the line men working to get power restored. My father was School Superintendent and we had two snow days in a row…practically unheard of in those days.


The next time I huddled in front of a fireplace during a Maine ice storm was last year. I was house-sitting with my dear friend Georgine. Some of you may remember Georgine from my earlier columns. She has Alzheimer’s and I am privileged to have been a part of her life. When the lights first flickered and went out, I just lit some candles and brought in more wood. We had a lovely dinner in front of the fire (they had a gas cook top). We were fine until G went to brush her teeth and we realized we had no water. A well, after all, needs a pump. And a pump needs electricity. OK - we would get through the night.


I called my son the next day….when we were still without power and he brought us water and an extra long cord and adaptor so I could charge my Servox from the car. That night G and I made s’mores. Bundled up in front of the fireplace, we toasted our pioneer spirits with wine and chocolate marshmallows. It was a magic moment. Even after the lights whirred on later that night and Georgine sunk further into her own darkness, she remembered the night we were fearless in the face of adversity.


Icicles are nothing.


The fact that I can be sitting at my computer writing this and you can be sitting at your computer reading it means we are fortunate, indeed. Some would say blessed, some would say lucky and I would say that discussion is for another day. But I do know this. I am very thankful as my beautiful baby granddaughter plays safely and contentedly at my feet that she has a secure roof over her head and not only two loving parents but a wealth of grandparents, great grandparents and assorted aunts, uncles and cousins. I found it very hard to watch the pictures of all those babies her age with such an uncertain future.


There is a Jewish saying from the Talmud. “If you save one person, you save a world.” We may never know the worlds lost to us because of this disaster. Perhaps, in time, we will learn something of the worlds saved as stories of hope and resilience emerge from under the rubble.


Our lives go on and so we have a responsibility to the dead and the living to make every breath count. As we strive to make each of our own worlds stronger, wiser, safer and kinder, who knows, we might just save someone else.

Donna
 

 

 

 

 

It Took a Village



Yes, it took a village to help me through my rehabilitation process from pre- op counseling through surgery, radiation and countless speech pathologists and conferences. It was all worth the effort, and I thank each and every one of the devoted people who helped me become an independent laryngectomee.


Today there is one speech pathologist (SLP) in particular who comes to mind. Frequently I mention those who have been my mentors, but this woman is not a giant among those who teach laryngectomy anatomical changes, or alaryngeal speech. When I left Mayo Clinic I had a pamphlet that was left in my ‘visitor’s bag’ by a laryngectomee club member. This ‘IAL Directory of Alaryngeal Speech Instructors’ was my lifeline to a list of those in my hometown who could teach me to speak again. I had no clue then that someday my own name would be listed in it, but that is a story for another day.


At that time I found two choices in Kalamazoo, Michigan: Western Michigan University or Sherry Gant-Johnston at the Constance Brown Speech & Hearing Clinic. I chose Sherry because she had attended a seminar on Laryngectomee Rehabilitation at Mayo Clinic the summer before my surgery. I assumed this would amount to a continuation of what I had already received from the Mayo staff. I was a little surprised to learn that I was Sherry’s second laryngectomee client. We seemed to hit it off well and accepted that we were both new to this task and would figure it out together. I purchased a textbook by Warren H. Gardner, PhD., F.A.S.H.A., ‘Laryngectomee Speech and Rehabilitation’. We worked out way through this book chapter by chapter. I still use my worn copy as a constant reference; it’s like another faithful old friend.


Over the past three decades I’ve come to fully realize how special Sherry was as a woman, a friend and my own personal SLP. She went the extra mile so she would know what I was enduring and to discover how she could better help me. I was unaware that she was walking the walk with me by using an electro larynx like mine for everything for one week. She learned the perils of finding the sweet spot, being understood on the phone, and the stares at work and in public. The most difficult task was helping her husband and two very young daughters understand what this experiment was all about. This task became even harder for her family to accept when she spent a week or more trying to use esophageal speech for everything. Her husband forbade it in their home because he thought it was disgusting. I’ve had some of my clients tell me this has happened in their homes, too. Sherry finally shared this with me privately months later when I was ready to be discharged as her client. The very thought of her going through all of this partly for my benefit and partly to make her a better clinician while working with other laryngectomees touches me to this day. I thank her often even though we lost touch many years ago. I hope she knows how grateful I am for her caring gift of compassion.


Nowadays, SLPs at every level of competency ask me to explain how I teach esophageal speech. I’ve noticed that they are apt to think of it using their own physical experience. They relate to the “swallow gulped air, and burp” concept. It takes some persuasion to get them to embrace the idea that it only takes a mouthful of air (about 1 or 2 tablespoons) for voice, instead of filling their esophagus, and perhaps their stomach with air as well, for one long burped sentence. The hardest change in their thinking is that it is easier instead of harder for a laryngectomee to speak esophageally. The problem is trying to use the disconnected air supply for speech. The whole business of using articulation to get enough air for voice with consonants, and using vowels to release that same air is news to so many. It was news to me, too, before the village of caring professors, clinicians and SLPs taught me almost everything I know about laryngectomee rehabilitation. However, the most precious lesson taught to me was… Yes, I can.



Elizabeth Finchem
Tucson, AZ 10/78
 

 

 


 

VALENTINES DAY



Hello Everybody,

Since joining WebWhispers, I realise that within this very good club are many close friends. Although they hardly ever see each other, these are friendships brought about by a common adversity and the wonders of the internet.


I myself have made many new friends world-wide, and during this dreadful winter in the Northern Hemisphere we all look forward to Spring. The best harbinger is St. Valentine’s Day on the 14th of this month, when a young man’s fancy turns to thoughts of love, and may I add, those of young ladies ( secretly at least).

Some of those friendships you have made in the daily digest over the years have become important to you, as proven to me, the club’s bard, by your requests for me to write your friends a Valentine's Card. Of course I can do this, but I cannot give names, and it is up to the recipient to guess if it is for them, and who has sent it.

Let our minds wander in the fields of crocuses and beautiful things, and forget for a moment, such things as valves, fistulas and flatulence. Let us tip-toe through the tulips of possibilities, and of a life completely free of aggravating problems.

So at your request, and it could be for each one of you, two poems, in the Shakespearian Love-Sonnet style, the first written by a man ( Your admirer ), and the second written by a woman, ( Your admirer.)

THE DISCLAIMER:

I think it fair, that as I am not involved in this, I cannot be held responsible by any irate husband or wife, boy or girl friend, kept person, person interested, or those with just evil intentions.

For the gentlemen, you have nothing to worry about, as I am 4 foot 2 inches tall, walk with a limp, am bald, have no voice, my teeth keep falling out, am short sighted and deaf with creaking bones; a veteran of the Zulu Wars, I was accused of cowardice at Rorkes Drift, Natal. I would heartily contest any litigation for divorce or paternity.

FOR THE LADIES..........THE VISION


Your vision haunts every waking hour,
I cannot forget your lovely face.
Your pale blue eyes, with such mystic power,
make my poor heart, beat such a pulsing race.

Your soft smooth skin, that I dream to touch.
Your perfect lips, that I oft dream to kiss.
Your tumbling golden hair, I love so much.
Your angel elfin face, I do so miss.

I dream fantastic thoughts of passion,
in my arms, I feel your soft ,warm breast,
pressed against me in a loving fashion,
as our lips and heart, together are pressed.

So long as I can have dreams of thee,
my love sweetheart, will always be.

[For those ladies with different coloured eyes and hair, it is meant for you as well.]


FOR THE MEN........THE UNSPOKEN WORD


My dear, if I could only tell thee,
those imprisoned words, I want to say,
but my throat alas confines me,
read the message in my eyes, I pray.

Thoughts of love, frustrate me so,
of fondest feelings I have for thee.
I pray that always, my eyes will show,
then my heart will soar, like a spirit free.

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

I cannot speak yet of my heart’s desire,
just read my sad eyes, so full of fire.

 

I hope I have got you all thinking, " Who could have sent me such a thing," and that it has made you smile and forget all your daily worries. Who knows what it might develop into?

Keep well all of you, your friendly (mischievous) speechless poet........of Ashford, Kent, UK............Len
 

 

 

 


 

RECEIVING CARE FROM A CAREGIVER

 

I read with interest the article last month by Christine Price (Wales) titled “The One Person” and would ask you to attend the Carers Chat on the WW Forum. I am one of the fortunate (so far) where the dreaded “C” has not yet returned but I am only three years into a five year journey. According to the doctors I am in the clear and as far as they are concerned, am looking good to go the whole way; I am not so sure and live each day as it comes.

Christine’s piece describes the dedication it takes to be a caregiver and the responsibilities it entails. Two o’clock in the morning and in your slumber you are awoken with a start as the stoma of your loved one has to be cleared or various other things I could mention. As the recipient of this care, we are grateful but over time we could take this for granted... but should we? Do we give the caregivers the credit they deserve? Probably no, because over time we just come to regard the carer as the norm. That is my opinion and I look forward to objections to my comment.

As I said earlier, I am (according to my surgeon) one of the lucky ones. I can do most things for myself. Yes, I cough mucus and have bad days as well as good ones since my operation in 2006. I look at life in a different way now. I am not the same person that I was, although the people around me are. They accept me for what I am now - a “Lary”. The reassurance of those around you when the ‘panic attack’ hits you for no apparent reason is invaluable; the hug, the stroke of the brow, anything that calms you back to normalcy.

I spent a couple of weeks before Christmas not feeling well. It was the good old fashioned common cold, which affects us greater than the ‘normal’ human being. In my case going straight to the chest area as my diminished respiratory system.

I spent a great deal of time in bed, appetite nil and generally feeling like crap. My wife did as much as she could but I was in an awful mood and nothing seemed to be right. I only had a cold, for god’s sake, but the way I was acting you would think that I had contracted SWINE FLU! Regardless of the fact that I had no idea what symptoms I could expect. I needed a sign saying “Beware - Completely Over The Top Person In This Room” on the bedroom door!

Being a Lary changes your life in so many ways. Every time I feel unwell my brain goes back to the “cancer days” and I think, “Oh my god, here we go again’. Only to be proven that after the event I was wrong and all I really had was a cold. All of these negative, “oh, I feel so sorry for myself”, can lead to depression if you are not careful.

Depression is a vicious friggin disease. As someone close and very dear to me said, “It is like a black dog that creeps up behind you in the dark”. It is a separate illness from cancer, but after all we have been through - the tests, scans, blood samples, biopsies, surgery and whatever our consultant suggests post operation, the black hole of depression can and often will creep upon us.

The point that I am trying to make (probably badly) is that it applies to caregivers as well. Their dedication to us as Lary’s is such that we tend over time to take it for granted; almost like snapping our fingers and expecting to happen! This burden can and will ultimately take its toll and the black dog will creep up upon them as well over time, but we are so wrapped up in our own lives that we do not give it any consideration.

We do not see this side of our carers as they hide putting us first and managing the rest of their lives in the little time they have available. Nevertheless, they, too, need treatment and guidance to get them through this ordeal. They did not ask for this job but are expected, on a daily basis, to respond to our changing needs. I doubt that many go to thier GPs and report the problem because they are not aware that they have it. They are too busy worrying about and caring for us.

My question is: what can we do to lighten their load?

God bless you all.
Mike Burton

[Carers/Givers Chat at the WW Forum is held the first Thursday of every month- times and details for participating to be announced on the daily post]

 

 

 

 

 

 

More Comments on  Food and Cooking

 

With the good luck last month using the chopper, I was on my way to buy myself a crock pot to cook tender... whatever kinds of cuts I had purchased. I ran into my son and DIL on the way and mentioned where I was going. They looked at each other and almost spoke together. We don't have your Christmas Present...Please let us get that for you. A win-win situation. So I now have a crock pot.

 

I cooked some chicken and it was excellent but yesterday, I picked up a package of ribs. I was in a hurry, so I washed them off, poured a little oil in the bottom of the new pot, dropped them all in. Then I opened the cabinet door, grabbed the Cajun seasoning, garlic, onion and sprinkled all of them generously, put the lid on and turned it on low for 5 hours. I actually forgot they were in there for about 4 hours and then I peeked, added about 1/4 cup of water just to be sure of the gravy, and, at the 5 hours, it put itself on warm and I had a great supper later.

We have a large crock pot section in our WW recipes and that was what started me thinking of getting one last month. I read Dutch's notes, and he said:

I SHOULD have been using this cooking method since 1994 ... but, for some unknown reason, it did not even occur to me until 10 years later. Probably most of you were smarter than I and figured this out already, but at the risk of stating the obvious, if you are NOT using one, I would highly recommend that you start NOW. You will NOT regret it!!
Preparation is easy, too. You spend about 10-15 minutes in the morning preparing the meat and the "ingredients", adding them to the "pot", and then turning it on LOW. Then, 6-8 hours later, you simply serve and eat and ENJOY!
So .. if you are one of the many of us who have problems chewing and swallowing MEATS, a modest investment in a Crock Pot may well be the answer to your prayers!! Happy eating to all!"

Dutch

You will find that and lots more at:

http://webwhispers.org/library/Crock-PotCommentsRecipes.asp

Another note about swallowing. I started taking my Prilosec generic...every day, need it or not! I am swallowing easier so that tells me I was having a bit more problems with acid reflux than I knew.

If anyone wants to send in some recipes, please address them to library@webwhispers.org and we will get them online with your name on them.

 

Pat Sanders
 

 

 

 

COPD Support Group

 

I have been a subscriber to a COPD newsletter that is published weekly. It has up-to-date information on COPD, along with hints to deal with COPD. The hints are followed by some lighter content, links to games, youtube and other web pages, which I find release tension. I look forward to receiving this every week. Here is an excerpt of some fun tips.

 

Len Librizzi

 

HELPFUL HINTS FOR DEALING WITH YOUR CAR IN WINTER

Keep your headlights clear with car wax!

Just wipe ordinary car wax on your headlights.. It contains special water repellents that will prevent that messy mixture from accumulating on your lights - lasts 6 weeks.

Squeak-proof your wipers with rubbing alcohol!

Wipe the wipers with a cloth saturated with rubbing alcohol or ammonia. This one trick can make badly streaking & squeaking wipers change to near perfect silence and clarity.

Ice-proof your windows with vinegar!

Frost on its way? Just fill a spray bottle with three parts vinegar to one part water & spritz it on all your windows at night. In the morning, they'll be clear of icy mess. Vinegar contains acetic acid, which raises the melting point of water---preventing water from freezing!

Prevent car doors from freezing shut with cooking spray!

Spritz cooking oil on the rubber seals around car doors & rub it in with a paper towel. The cooking spray prevents water from melting into the rubber.

Fog-proof your windshield with shaving cream!

Spray some shaving cream on the inside of your windshield & wipe it off with paper towels. Shaving cream has many of the same ingredients found in commercial defoggers.

De-ice your lock in seconds with hand sanitizer!

Just put some hand sanitizer gel on the key & the lock & the problems are solved!

Excerpted from COPD-Support Newsletter
To learn more about COPD-Support: http://copd-support.com/
To subscribe to the COPD-Support Newsletter: http://copd-support.com/signup-news.html
 

 

 

 

 

 

Patience Is Needed

 

I have an impression that laryngectomees may be generalized as a group of impatient, "type A", personalities. I say “impression” because I have no sound data to back up this impression, just years of reading posts and meeting larys at conventions.

Now, I did study statistics in college, and even aced the course, but that was a long time ago. I have forgotten much because I did not use what I learned while I still remembered it. I do know enough, however, to realize that my observations and readings do not constitute a meaningful sample of anything and I do understand that the postings may be skewed because impatient people are more likely to post complaints.

Anyway, patience, or the lack thereof, seems often to get in the way of the road to recovery.

We are all different (the recurring mantra again) but I suspect, that for the majority of us, developing larynx cancer was not an overnight thing. Rather, it often resulted from years of life style choices that contributed to a genetic susceptibility. Recovery, likewise, is not immediate, but rather a step by step progression.

The operation is major. Healing must be measured, not in days and weeks but in months or even years, Adjusting to the new lifestyle imposed by the removal of the larynx and the concurrent rerouting of our pipes is also a prolonged process.

A great example of how impatience works against us is in the use of a speech prosthesis and hands free valve. Voicing is usually immediate upon the insertion of the prosthesis. This can lead to the belief that proficient speech should be immediate too. Proficient speech, however, often takes considerable time and practice as we learn to use the prosthesis and our new, albeit easier than other methods of speaking.

Care of the prosthesis, also, is a matter that takes some patience. While cleaning the stoma and around the prosthesis is not greatly time consuming, we need to take some care and our time in poking around with brushes and forceps lest we dislodge what is in our throats, or scratch delicate tissue.

Successful use of a hands free valve, likewise, is not always immediate. Although not everyone is physically able to get and keep a seal with a hands free valve, there are those who fail, not because their reconstruction prevents a good seal, but because they will not take the time to learn to prep their stoma and apply the seal properly. They may also try one method of attaching a base plate that does not work for them then not try the other methods available. Patience can pay off.

Of course, the same holds true for esophageal speech and for using an artificial larynx. ES requires training and practice to achieve. ALs require some instruction and practice to become proficient. I won’t go into any detail on those methods because I don’t use ES and, although I do have an AL which I am able to use if needed, I am hardly proficient with it. The need has not been there.

So, rather than complain about things not working immediately or giving up after the first attempt, we need to develop a little patience in dealing with and learning about our new voices and our new life style.

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 55 new members who joined us during January 2010:

 

Sue Avery
Pasadena, CA
Carol Ball - (Caregiver)
Bruington, VA
Brenda Bevill - (Caregiver)
San Bernadino, CA
     
Marc Browning
Tucker, GA
James D. Cairns
Bridge of Allan, Scotland
Joanne Carlton
Marske, Cleveland, UK
     
Charles Crouch - (Caregiver)
Fisherville, KY
Judy Crouch
Fisherville, KY
Beverly A. Davis
Tucson, AZ
     
Sylvia Diaz - (Caregiver)
Kingwood, TX
Stuart Duckworth
Altadena, CA
Ailbhe Dunne - (SLP)
Dublin, Ireland
     
Sharon K. Enoch - (Caregiver)
Williamston, NC
Patricia Ephault
Scranton, PA
Ian Farrington
Oldham, UK
     
Juan s. Garduno
Kingwood, TX
Karen Lampadius Fiala - (Caregiver)
Doylestown, PA
Ken Fitzgerald
Carson City, NV
     
Audrey Fox - (Caregiver)
Los Altos, CA
Larry Fox
Los Altos, CA
Jelena Gajic - (Caregiver)
Begrade, Serbia
     
Milan Gajic
Begrade, Serbia
Larry Giachetti
Perkasie, PA
Angelika Hamscher - (Caregiver)
Webster, TX
     
Debbie Jacoby - (Caregiver)
Simsbury, CT
Niles Jacoby
Simsbury, CT
William J. Kane
Fort Lauderdale, FL
     
Courtney Kelly - (SLP)
Denver, CO
Linda Nell Latham - (Caregiver)
Trinity, AL
Don Mallard Layton
Riverside, CA
     
Jeffrey G. Lewis
Bonnie, IL
Vicki Lewis - (SLP)
Orlando, FL
Fred Losch
Fallbrook, CA
     
Ronald R. Mattoon
Des Moines, WA
Michael McGarr
Montreal, CAN
Lynne McRaild - (Caregiver)
Ontario, CAN
     
James Murphy
Ruidoso, NM
Joe Nickerson - (Caregiver)
Tucker, GA
Barbara Nogueira - (Caregiver)
Fallbrook, CA
     
Frank O'Brien
Portsmouth, VA
Tracy Parson
Wedowee, AL
Anthony Priest Jr.
Westford, MA
     
Brooke Racheleau - (Caregiver)
Grand Prairie, TX
Cruz Robledo
Hesperia, CA
Rose Ann Robledo - (Caregiver)
Hesperia, CA
     
Robin Rocheleau - (Caregiver)
Arlington, TX
John Rogers
Williamston, NC
Arnold Sharp
Perry, MO
     
Alex Shedletsky
Wyalusing, WI
Don Stephens
Gainesville, GA
Kristy Terry - (Caregiver)
Trinity, AL
     
Dale L. Vanluven
Savannah, TN
Andre Vaughan
Richmond, VA
Nancy Widen
Bainbidge Island, WA
     
James Wood
Pickerington, OH
   

 

 

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           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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