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
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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

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

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

Health Update - Leap Year Day

I had a full day at my cancer center on Wednesday February 29, 2012. Blood draw at 7:30 AM, CT scan, and 3 separate clinic visits with my oncologist, surgeon, and dental oncologist. I received the radiologist's report of my CT scan results on Thursday; no local or metastatic evidence of disease. After 3 quick, life threatening recurrences in the 2005 to 2007 time frame, I've had no evidence of disease since October 2007 (4.5 years) and have been in remission since December 2009 (2 plus years). This is remarkable!

I'm not sure that my doctors will ever consider me "cured," but this is the next best thing.

Take care everyone.
Ed

MD Anderson Cancerwise Blog Post

I wrote a new blog entry which appeared in my cancer center's Cancerwise blog today. The blog entry is on simple tools I use to help manage my ongoing care. Following is a link to the post.

http://www2.mdanderson.org/cancerwise/2012/02/tools-to-manage-ongoing-care.html

Enjoy,
Ed

To Walk in My Shoes

I have blogged in the past about my “new normal.” The “new normal” is the state in which I find myself (physically and mentally) as a result of my cancer and the life sustaining medical treatments of radiation, chemotherapy, and surgery. My “new normal” characteristics include a lack of stamina, a compromised immune system, speech difficulties, swallowing issues, lack of saliva, minor facial paralysis, extremity neuropathy (mostly in the balls/toes of my feet), maintaining a comfortable body temperature, manageable chronic pain, occasional TMJ, and lastly (self-diagnosed) a form of PTSD.

What’s not on this list is the external facial scaring from multiple facial surgeries. What makes this important is 1) my surgeons did an amazing job of facial reconstruction and 2) whatever scars I do have just don’t bother me.

The following is in no way a complaint; it is an explanation of how these changes impact me on a day-to-day basis and I’ll do it by way of two examples. The world that makes up my “new normal” is all internal, there are no obvious visible scars, lost limbs, obvious paralysis, etc. that would alert outsiders (i.e., that’s everyone outside my body) to see that my world may be different than theirs. This point is important! I look normal to everyone and the halo effect takes over until I do something that may seem anti-social or unusual.

Example 1: Oral hygiene. Without rehashing old news, I have trouble keeping my oral cavity clean. While the majority of what I drink ends up in my stomach (where it should), some of it remains in my oral cavity, upper esophagus, and at times in my wind pipe. I can’t wash it down, brush it out, gargle or find any other effective means of keeping my oral cavity clean. I have to spend time after each meal meticulously washing my oral cavity. What this means is that I like to eat (and I use that term loosely) twice a day so that I’m not spending more time than necessary taking care of my oral hygienic needs. A few years ago I bought a used Gomco aspiration suction device off of eBay for $100. To give you a feel for its age, it had a tag that said “Inspected 1977.” It weighs about 30 pounds, is something that you may have seen in your dentist’s office in the 1970s and 80s and is pretty effective at helping me clean my oral cavity. Unfortunately, it’s not all that portable. I traveled from Texas to Virginia earlier this week. My mouth felt very uncomfortable because I couldn’t properly clean it. My wife and I headed to CVS to see if there was a solution to this problem. She found a small electric baby nasal suction device ($31) from Graco. I knew it wouldn’t work as is, but I thought a trip to Home Depot would yield good results. I bought some small plastic tubing and a gasket ($5) and now have a device that does what I need it to. Below is a picture of the device. In addition to all the above, I see my dental hygienist every three months to help keep my oral hygiene in check. Keeping my oral cavity clean after all my treatments is mandatory to my continued good health.

Example 2: Standing and talking. Who out there can not stand and talk? I don’t see many hands. I can stand and talk, but it causes my obturator (a device I wear inside my mouth that helps me with speech) to put a strain on my back teeth which in turn can lead to TMJ and severe pain. It is much more comfortable for me to talk while sitting and, in addition, to not just sit, but to sit in a slightly reclined position. This has an impact on me in social situations. Remember, I look normal. I know standing and talking is a great way to socialize, yet I also know this will lead to pain. I find it awkward to go into another room and sit by myself although this is the action I sometimes take. If I slouch when I sit it is not because I’m lazy, it is because it is more comfortable and in the end will mean less pain. It is these little nuances in my behavior that have an impact on my day-to-day living.

Each and every one of my other differences has their own impacts and nuances. This blog entry is not a complaint; it’s me trying to explain what to some may appear odd behavior, but to me it is a way to manage my differences in the best way I know how.

Take care,

Ed