A few weeks ago I submitted a blog entry to the MD Anderson Cancer Center blog, Cancerwise. The entry was published today, the gist being how I've approached adjusting to loss and my new normal post cancer and cancer treatment. A link to that entry follows:
http://www2.mdanderson.org/cancerwise/2012/08/adjusting-to-the-new-normal.html
Take care,
Ed
Monday, August 20, 2012
Wednesday, July 18, 2012
DYSPHAGIA (dis – FAY – jah) - Swallowing Disorder
DYSPHAGIA (dis –
FAY – jah): This word comes from the Latin root of “dys” which means difficulty
and “phagia” which means eat or swallow. Dysphagia is the medical term for
swallowing difficulties. Swallowing is one of the most complex neuromuscular
movements in the human body and it affects a large and growing number of
individuals worldwide. Swallowing difficulties may be due to nervous systems
disorders such as stoke, brain injuries, Lou Gehrig’s disease (ALS ),
multiple sclerosis, muscular dystrophy, Parkinson’s disease, cerebral palsy,
Alzheimer’s disease or to head and neck traumas from surgery due to cancer,
other illnesses, or to accidents.
I had a Modified Barium Swallow
(MBS) test this past week. This test is used to assess one's swallowing
function. Highlights from my test were as follows:
· I
have a functional swallowing capability. It works at about 10% of one's normal
swallowing capability.
The MBS test is one of the coolest
medical tests I have witnessed in my cancer journey. It is a live x-ray while
swallowing slightly radiated foods and watching how one's swallowing apparatus
operates in real time. I was able to upload my MBS video to the Internet and
have included a link to that test below. It's 72 megabytes, so it may take a
minute or two to launch.
The remainder of this blog entry is information I compiled from a number of different websites in addition to where one might turn to give or receive support for dysphagia.
The numbers: The
prevalence of dysphagia is unknown, but Epidemiologic studies indicate that the
numbers may be as high as 22% of the population over 50 years of age. Several
studies conclude that between 300,000 and 600,000 individuals in the United
States
Social impacts:
We take many of our bodily functions for granted; for example, breathing, a
beating heart, and eating. The impact of breathing and heart disorders are not
to be minimized, but they are relatively straightforward. The impact of
swallowing disorders is more difficult to quantify. Here are two exercises to
help illustrate this point.
· Think
of the number of times in the past week where you shared a meal or snack with
friends, family, or even the occasional stranger. STOP HERE! Do you have a
number in mind and a vision of those occasions? Now, imagine never having another
meal with another human again, EVER. How would your life be different? Would
you dine with your family? NO. Would you go out to lunch with co-workers? NO.
Would you take clients out to meals? NO.
· The
next time you watch a movie count the number of events where there is any
drinking or eating. That sip of beer by the pool, the snacks at the party, the
plans made over breakfast, lunch, or dinner. On first blush in thinking about
past movies, the eating fades into the background. Remember, we take it for
granted. We’re not counting the number of breaths taken of number of
heartbeats. The number of events where eating is taking place with amaze
you.
Our society revolves around food and meals. For people with
dysphagia, life as you know it ceases to exist. Dysphagia causes depression,
low self esteem, lost wages, poor social performance, increased health risk
such as aspirating pneumonia and for many leads to an increased likelihood of
suicide.
Dysphagia symptoms: Each
person is different, but some of the common symptoms of this disorder are as
follows:
· coughing during or right after eating or
drinking
· wet or gurgly sounding voice during or after
eating or drinking
· extra effort or time needed to chew or swallow
· food or liquid leaking from the mouth or getting
stuck in the mouth
· recurring pneumonia or chest congestion after
eating
· weight loss or dehydration from not being able
to eat enough
There are diagnostic tests for dysphagia. These tests are
generally run by speech-language swallowing pathologist. The most commonly used
tests are the Modified Barium Swallow and the Endoscopic Assessment.
Dysphagia treatment: Treatment
depends on the cause, symptoms, and type of swallowing problem. A
speech-language pathologist may recommend:
· specific swallowing treatment (e.g., exercises
to improve muscle movement)
· positions or strategies to help the individual
swallow more effectively
· specific food and liquid textures that are
easier and safer to swallow
Resources: There
are a few organizations whose mission it is to provide support for clinicians,
patients, and care givers for people with dysphagia. Following is a partial
list of top organizations:
· National Foundation of Swallowing disorders
(www.nfosd.com)
· American Speech-Language-Hearing Association
(www.asha.org)
· Dysphagia Research Society
(www.dysphagiaresearch.org)
Other Resources:
There is a free app for the iPhone named iSwallowTM. It has 15
physical exercises to help those with Dysphagia overcome (or lessen the affects
of) this devastating disability. The app is intended to be used by patients
after consultation with their speech-language pathologist. The app is 100% free
to clinicians and patients. It allows a clinician to input a schedule of daily
exercises unique to each patient. The app has a video instruction for each
exercise, reminds patients of their exercise routine, helps time their
exercises, and records a log of their usage.
How to Help or be
helped: The National Foundation of Swallowing Disorders, a non-profit
501(c)3 organization established in 2006 is on a drive to recruit
speech-language pathologists nationwide to lead regional in person and online dysphagia
support groups. If you are a speech-language pathologist interested in leading
a support group in your area, please visit the foundation at www.nfosd.com. If
you are a dysphagia patient and would be interested in joining an online or in
person support group, please visit foundation at www.nfosd.com as well. Use the "Contact" tab to send a message to the foundation. There
is no fee for registering or joining a support group.
Thursday, May 31, 2012
Tumor tissue donation: Should you consent?
Hi,
I have been doing some volunteer work at my cancer center during the past year. It doesn't involve a lot of time, maybe one to two days per month. But, I love the work. Most recently, I helped them review their tumor tissue acquisition process. My role in this was to provide a patient perspective on their process.
The cancer center published an entry on their Cancerwise blog website yesterday. Hopefully, this entry provides some insight into why donating a tumor tissue sample, whether for personalized cancer treatment or for the advancement on the science of curing cancer, is something one should consider if asked.
A link to that blog entry is as follows:
http://www2.mdanderson.org/cancerwise/2012/05/tumor-tissue-donation-should-you-consent.html
By the way, I do draft these articles, but the communications staff at the cancer center adds a touch to them that I really admire. I'd like to thank the MD Anderson Communications staff for their thoughtful additions and edits.
Regards,
Ed Steger
I have been doing some volunteer work at my cancer center during the past year. It doesn't involve a lot of time, maybe one to two days per month. But, I love the work. Most recently, I helped them review their tumor tissue acquisition process. My role in this was to provide a patient perspective on their process.
The cancer center published an entry on their Cancerwise blog website yesterday. Hopefully, this entry provides some insight into why donating a tumor tissue sample, whether for personalized cancer treatment or for the advancement on the science of curing cancer, is something one should consider if asked.
A link to that blog entry is as follows:
http://www2.mdanderson.org/cancerwise/2012/05/tumor-tissue-donation-should-you-consent.html
By the way, I do draft these articles, but the communications staff at the cancer center adds a touch to them that I really admire. I'd like to thank the MD Anderson Communications staff for their thoughtful additions and edits.
Regards,
Ed Steger
Tuesday, May 22, 2012
Speech Impediment Simulation
Background
This isn’t the first time I’ve written about having a speech impediment. My impediment is a direct result of my cancer and the life saving treatment. Anatomically speaking, here’s what happened. First, a hole about the size of a quarter was cut in my soft palette to remove active cancer cells. Second, a tumor, probably the size of a golf ball, was removed from the base of my tongue. Unfortunately, a major nerve which ran through the middle of that tumor had to be removed along with the tumor. The removal of that nerve essentially paralyzes the entire left side of my tongue. Both of these affect my speech in different ways. Neither of these two specific surgeries, in and of themselves, has left any visible physical scaring.
Soft palette: When one talks, the soft palette rises toward the back of the throat and makes it so that the air traveling from the lungs over one’s vocal cords does not dissipate through one’s nasal passage. In my case, a significant amount of air dissipates via my nasal passage. The effects are as follows: 1) it takes about 4 to 5 times the energy to speak compared to someone where there is no defect; 2) it creates a nasally sounding voice; and 3) it is almost impossible to speak with any volume.
Tongue nerve: This is a bit harder for me to articulate (please excuse the pun). A speech therapist would be better at describing the reason behind the impact, but I have issues with articulation, especially words with the letters “d” and “g.”
Given that there are no visible signs of physical scaring, I have been asked at times, did you have a stroke? This may seem a bit odd, maybe even rude, but I actually enjoy sharing with others my story and it shows they have an interest by asking. All of this led me to dream up (i.e., develop) a simulation which would help those without my specific defects better understand my disability. Actually, this simulation focuses only on the soft palette part of the disability, but this is the one, that for me is the most frustrating.
Simulation
Long story short, I asked my visiting cousin to play the guinea pig in this experiment. Thank you Pam, you are a sport.
We needed a large space which didn’t have other people around. I also wanted to measure distances. We chose an empty football field with yardage markers. The simulation was to carry on a normal conversation, but with a twist. We stood 50 yards apart. I texted her a set of open ended questions over a period of about 10 minutes. She answered my questions by speaking loudly over the 50 yards between us. At the end of 10 minutes, we tried the same set up, but with a 25 yard separation.
Simulation results
We spoke about how she felt about the energy required to have a conversation under these circumstances. At 50 yards, she said it was exhausting and she would end up just not talking, it wasn’t worth it. At 25 yards, it was easier, but not comfortable. She gave me a hug, said she had no idea what it must be like for me. It actually brings tears to my eyes just thinking about this. Someone finally understands how this seeming minor defect affects me in common day-to-day life. Thank you again Pam. I suspect, for my specific disability, the correct yardage might be 35 to 45 yards, but it depends on conditions such as wind (or in a social situation, the noise level in a restaurant).
Conclusion
I’ve dreamt up other exercises to simulate other personal disabilities and may give them a try over the next few months. If you search the web, you’ll find handicap simulations for those confined to a wheelchair or those who are blind. Although I didn’t find any disability simulation exercises for those with head and neck cancer disabilities, reading about the design of those simulations were beneficial in conducting the above simulation. The most important aspect was to discuss how the person felt during the exercise.
You can participate
If you try this simulation or have other disabilities you’d like to simulate, please email me your experiences or ideas. I think they would help others.
I’m also beginning to develop a survey to gauge how head and neck cancer survivors view their disabilities versus how they feel others close to them view their disabilities. If you are a head and neck cancer survivor, caregiver, a loved one, or close friend, please email me or leave a message in this blogs comment’s section. When the survey is conducted, I’d like to gather as many responses as possible and will email you with the online survey website address. My email address is in the "About Me" "View my complete profile" section near the bottom of the right hand column on this blog site. I’d include it here, but it would generate even more spam.
Take care everyone (and, I hope to hear from you),
Ed
.
This isn’t the first time I’ve written about having a speech impediment. My impediment is a direct result of my cancer and the life saving treatment. Anatomically speaking, here’s what happened. First, a hole about the size of a quarter was cut in my soft palette to remove active cancer cells. Second, a tumor, probably the size of a golf ball, was removed from the base of my tongue. Unfortunately, a major nerve which ran through the middle of that tumor had to be removed along with the tumor. The removal of that nerve essentially paralyzes the entire left side of my tongue. Both of these affect my speech in different ways. Neither of these two specific surgeries, in and of themselves, has left any visible physical scaring.
Soft palette: When one talks, the soft palette rises toward the back of the throat and makes it so that the air traveling from the lungs over one’s vocal cords does not dissipate through one’s nasal passage. In my case, a significant amount of air dissipates via my nasal passage. The effects are as follows: 1) it takes about 4 to 5 times the energy to speak compared to someone where there is no defect; 2) it creates a nasally sounding voice; and 3) it is almost impossible to speak with any volume.
Tongue nerve: This is a bit harder for me to articulate (please excuse the pun). A speech therapist would be better at describing the reason behind the impact, but I have issues with articulation, especially words with the letters “d” and “g.”
Given that there are no visible signs of physical scaring, I have been asked at times, did you have a stroke? This may seem a bit odd, maybe even rude, but I actually enjoy sharing with others my story and it shows they have an interest by asking. All of this led me to dream up (i.e., develop) a simulation which would help those without my specific defects better understand my disability. Actually, this simulation focuses only on the soft palette part of the disability, but this is the one, that for me is the most frustrating.
Simulation
Long story short, I asked my visiting cousin to play the guinea pig in this experiment. Thank you Pam, you are a sport.
We needed a large space which didn’t have other people around. I also wanted to measure distances. We chose an empty football field with yardage markers. The simulation was to carry on a normal conversation, but with a twist. We stood 50 yards apart. I texted her a set of open ended questions over a period of about 10 minutes. She answered my questions by speaking loudly over the 50 yards between us. At the end of 10 minutes, we tried the same set up, but with a 25 yard separation.
Simulation results
We spoke about how she felt about the energy required to have a conversation under these circumstances. At 50 yards, she said it was exhausting and she would end up just not talking, it wasn’t worth it. At 25 yards, it was easier, but not comfortable. She gave me a hug, said she had no idea what it must be like for me. It actually brings tears to my eyes just thinking about this. Someone finally understands how this seeming minor defect affects me in common day-to-day life. Thank you again Pam. I suspect, for my specific disability, the correct yardage might be 35 to 45 yards, but it depends on conditions such as wind (or in a social situation, the noise level in a restaurant).
Conclusion
I’ve dreamt up other exercises to simulate other personal disabilities and may give them a try over the next few months. If you search the web, you’ll find handicap simulations for those confined to a wheelchair or those who are blind. Although I didn’t find any disability simulation exercises for those with head and neck cancer disabilities, reading about the design of those simulations were beneficial in conducting the above simulation. The most important aspect was to discuss how the person felt during the exercise.
You can participate
If you try this simulation or have other disabilities you’d like to simulate, please email me your experiences or ideas. I think they would help others.
I’m also beginning to develop a survey to gauge how head and neck cancer survivors view their disabilities versus how they feel others close to them view their disabilities. If you are a head and neck cancer survivor, caregiver, a loved one, or close friend, please email me or leave a message in this blogs comment’s section. When the survey is conducted, I’d like to gather as many responses as possible and will email you with the online survey website address. My email address is in the "About Me" "View my complete profile" section near the bottom of the right hand column on this blog site. I’d include it here, but it would generate even more spam.
Take care everyone (and, I hope to hear from you),
Ed
.
Wednesday, April 25, 2012
A Second Chance at Life
Yesterday, the MD Anderson Cancer Center's Cancer blog, Cancerwise, published part one of a two part article that I authored. Please click on the link below to read part one of the story describing how surviving cancer has given me a second chance at life.
http://www2.mdanderson.org/cancerwise/2012/04/a-second-chance-at-life.html
To read part two, which was published today, please click on the following link.
http://www2.mdanderson.org/cancerwise/2012/04/a-second-chance-at-life-part-ii.html
Take care everyone,
Ed
http://www2.mdanderson.org/cancerwise/2012/04/a-second-chance-at-life.html
To read part two, which was published today, please click on the following link.
http://www2.mdanderson.org/cancerwise/2012/04/a-second-chance-at-life-part-ii.html
Take care everyone,
Ed
Saturday, March 10, 2012
A Road Less Traveled
If you ask a well traveled person where they’ve been, they don’t start with DC, Miami, or Los Angeles. They begin by telling you about their unusual and memorable adventures.
I traveled a road last week that was a road little traveled by head and neck cancer survivors. Here’s my story.
Two and a half years ago I had a Modified Barium Swallow test to assess my swallowing anatomy and shortcoming. I wrote about that test in the following blog entry (you may have to copy and paste this one):
hncancer.blogspot.com/2009/08/modified-barium-swallow-test
It’s worth a minutes to go to that blog entry as there is a 30 second video about what that test looks like. It’s the coolest medical test I’ve had. The Speech Therapist administering the test told me she had never seen anyone swallow like me. She then went on to say it was akin to how a sword swallower performs a sword swallowing feat. I had combined a technique known as a Super Supraglottic Swallow Maneuver with the ability to control my upper esophageal sphincter (UES) muscle. The UES is typically not under voluntary control.
As I was thinking about this (for the past 2.5 years – I may be slow, but I’m not stupid), I wondered last week if there was something I could learn from a sword swallower that may help improve my ability to enjoy more foods in a social environment. I searched the Internet for sword swallowers and found the Sword Swallowers Association International (SSAI) organization. The website contained a list of about 60 members who had been certified as legitimate sword swallowers worldwide. To be certified you have to actually pass a real sword swallowing test. After a little digging I saw that one of these 60 members lived within minutes of my house.
Many people would have stopped here, had a good laugh, and moved on. But, not me, I’m too stubborn. I reached out and contacted Jim Mackenzie. Jim is a performer (comedian, juggler, tightrope walker, etc) and he agreed to meet me at a Starbucks near our homes. And, as part of his performances, he swallows swords. Plus, he is funny, a great listener, and wanted to see if what he knew could help me.
Jim watched me swallow to assess, based on his own swallowing experiences as a human and a sword swallower, what part of my anatomy was and was not working. By the way, Jim is not a doctor, claims no expertise in this area, and did not recommend that I do anything. What he did do however is proceeded to show me (in a little hallway in the back of the Starbucks) how he learned to swallow swords (by way of demonstration) such that, if I of my own accord and free will, wanted to try these techniques. If and when I try these techniques, which Jim has spent years mastering; I’ll let you know how it works out. By the way, Jim did get a few stares from the Starbucks crowd during this private demonstration. Please visit his website at http://www.jimmackenzie.com/ if you are looking for a performer for an upcoming event. I think Jim would be a great addition and I’d like to thank him for taking the time and having the interest in helping me.
One rarely knows where life will take them. I thought this a worthwhile stop worth sharing about my cancer journey. It has taken me to places I never would have imagined before cancer.
Take care,
Ed
I traveled a road last week that was a road little traveled by head and neck cancer survivors. Here’s my story.
Two and a half years ago I had a Modified Barium Swallow test to assess my swallowing anatomy and shortcoming. I wrote about that test in the following blog entry (you may have to copy and paste this one):
hncancer.blogspot.com/2009/08/modified-barium-swallow-test
It’s worth a minutes to go to that blog entry as there is a 30 second video about what that test looks like. It’s the coolest medical test I’ve had. The Speech Therapist administering the test told me she had never seen anyone swallow like me. She then went on to say it was akin to how a sword swallower performs a sword swallowing feat. I had combined a technique known as a Super Supraglottic Swallow Maneuver with the ability to control my upper esophageal sphincter (UES) muscle. The UES is typically not under voluntary control.
As I was thinking about this (for the past 2.5 years – I may be slow, but I’m not stupid), I wondered last week if there was something I could learn from a sword swallower that may help improve my ability to enjoy more foods in a social environment. I searched the Internet for sword swallowers and found the Sword Swallowers Association International (SSAI) organization. The website contained a list of about 60 members who had been certified as legitimate sword swallowers worldwide. To be certified you have to actually pass a real sword swallowing test. After a little digging I saw that one of these 60 members lived within minutes of my house.
Many people would have stopped here, had a good laugh, and moved on. But, not me, I’m too stubborn. I reached out and contacted Jim Mackenzie. Jim is a performer (comedian, juggler, tightrope walker, etc) and he agreed to meet me at a Starbucks near our homes. And, as part of his performances, he swallows swords. Plus, he is funny, a great listener, and wanted to see if what he knew could help me.
Jim watched me swallow to assess, based on his own swallowing experiences as a human and a sword swallower, what part of my anatomy was and was not working. By the way, Jim is not a doctor, claims no expertise in this area, and did not recommend that I do anything. What he did do however is proceeded to show me (in a little hallway in the back of the Starbucks) how he learned to swallow swords (by way of demonstration) such that, if I of my own accord and free will, wanted to try these techniques. If and when I try these techniques, which Jim has spent years mastering; I’ll let you know how it works out. By the way, Jim did get a few stares from the Starbucks crowd during this private demonstration. Please visit his website at http://www.jimmackenzie.com/ if you are looking for a performer for an upcoming event. I think Jim would be a great addition and I’d like to thank him for taking the time and having the interest in helping me.
One rarely knows where life will take them. I thought this a worthwhile stop worth sharing about my cancer journey. It has taken me to places I never would have imagined before cancer.
Take care,
Ed
Sunday, March 4, 2012
National Foundation of Swallowing Disorders (NFOSD)
I've been following the work on and off of a physician and PhD researcher, Peter Belafsky at the University of California Davis campus, for over a year and wrote about his work in a blog post in December 2010 (http://hncancer.blogspot.com/2010/12/swallowing-difficulties.html). I asked my surgeon about him last week. Although he didn't know him personally, he was familiar with his work as a physician surgeon who has focused on swallowing disorders. He is a medical advisor to the NFOSD organization. This organization (http://swallowingdisorderfoundation.com/) developed a documentary on swallowing disorders. Here's a link to that documentary.
http://swallowingdisorderfoundation.com/swallow-a-documentary/
The part of the documentary that resonated with me was by Sonia in a clip that began at the 30 second mark and ends two minutes later. For those of you who wonder what it's like to have swallowing difficulties, she hit the mark for me.
Ed
http://swallowingdisorderfoundation.com/swallow-a-documentary/
The part of the documentary that resonated with me was by Sonia in a clip that began at the 30 second mark and ends two minutes later. For those of you who wonder what it's like to have swallowing difficulties, she hit the mark for me.
Ed
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