November 2010

 


 

 

Name Of Column Author Title Article Type
News Views Pat Sanders Terry Duga Still Serving Us News & Events
VoicePoints Philip C. Doyle, Ph.D.,CCC-SLP Voice - Quality Of Life Education-Med
WebWhispers Columnist Mary Jane Renner Ships That Pass In The Night Experience
Between Friends Donna McGary Help From Our Friends Commentary
Practically Speaking Elizabeth Finchem What's A Toyko? Education
Travel With Larys Pat Sanders 2010 WW Cruise To Alaska  Photos Travel
Words From The Webmaster Len Librizzi My First Year As A Lary Experience
The Speechless Poet Len A Hynds The Funny Side Of Cancer Prose & Poetry
Editor's Mailbox Leland Smith I Left My Larynx In Indy Experience
New Members Listing Welcome News & Events

 

 

 

 

Terry Duga still serving us

 

Terry Duga is the only original officer of WebWhispers, officially formed in 1998, still serving.  He has had to take a back seat since May 24th of 2010, when he had a stoke but is doing well. It has been a hard road through rehabilitation and Terry is still working on getting back to his full time job for the State of Indiana. 

He would like to continue to be a part of the WW Board of Directors and we, for sure, want his sage advice.  We are fortunate to have Carla Lynch, our WebWhispers Accountant, who has been doing a great job taking care of our finances during Terry's rehab. Carla is willing and able to accept the nomination for Vice President Finance & Administration for the 2 year term which is now opening.  The entire BOD backs her nomination.

We thank Terry for all he has done in the formation of WebWhispers and for continuing on with our BOD.

Enjoy,
Pat W Sanders
WebWhispers President
 

 

 

VoicePoints written by professionals 

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

 

                                         meaghan.benjamin@mac.com  

                 

 


Quantifying Voice-Related Quality of Life Following Total Laryngectomy: Preliminary Data

Agnieszka Dzioba, MSc1, Adam M.B. Day, MSc1, Philip C. Doyle, Ph.D.1,2,3
1Voice Production & Perception Laboratory, Rehabilitation Sciences
2Communication Sciences & Disorders
3Department of Otolaryngology Head & Neck Surgery, UWO
University of Western Ontario (UWO)
London, ON, Canada

 

Introduction


It is well-known that communication disability is a common consequence of treatment for cancer of the larynx. Significant challenges relative to verbal communication are particularly evident in individuals who undergo a total laryngectomy (TL) and these individuals frequently experience a challenging rehabilitative process to regain good communication skills. Three techniques of speech rehabilitation exist for those who are laryngectomized: electrolaryngeal (EL), esophageal speech (ES), and tracheoesophageal (TE) speech (Doyle & Keith, 2005). Regardless of which method of alaryngeal speech one seeks to acquire, a TL will to some extent inevitably compromise the ability of the person to interact with family, friends and others in one or more communication environment(s). Traditional outcome measures of postlaryngectomy voice and speech success include objective and perceptual measures of voice quality such as acoustic analyses (Bellandese et al., 2001; Oysu & Aslan, 2006), and subjective listener evaluations (Eadie & Doyle, 2004; Jepsen et al., 2003; Kazi et al., 2006; Loughran et al., 2005). Although these approaches of measuring treatment outcome are valuable, there is a growing body of research suggesting the need to understand the consequences of a voice disorder from the perspective of the patient (Amir et al., 2006; Finizia et al., 2001).


Several research studies have indicated that the quality of speech that a postlarygectomy individual is able to attain does not always correlate with satisfaction with life (Deleyiannis et al., 1999; List et al., 1996; Nalbadian et al., 2001). Laryngectomees experience many limitations that extend beyond their physical deficits including psychological problems such as depression, and social problems, such as reductions in attending social events (Nalbadian et al., 2001). As such, it is important to be able to quantify the level of disability that these individuals experience and their self-perceived quality of life (QOL) in the context of social impacts and participation restrictions relative to their voice disorder. Although some generic health-related quality of life measures such as the SF-36 (Farrand & Duncan, 2007; Weinstein et al., 2001;) and the EORTC (Op de Coul et al., 2005; Sewnaik et al., 2005) permit comparison of scores across different disease categories, they may not be sensitive enough to detect condition-specific symptoms and psychosocial factors in those who undergo TL.


For example, Op de Coup et al. (2005) assessed the applicability of the EORTC generic and Head and Neck cancer module to laryngectomized individuals and found that a necessity exists to develop more specific QOL questionnaires to address condition-specific issues in this population. Several QOL measures exist for individuals with voice disorders including the Voice Handicap Index (VHI) (Jacobson et al., 1997), Voice Performance Questionnaire (VPQ) (Deary et al., 2004) and the Voice Related Quality of Life (V-RQOL) (Hogikyan, 2000). Of these measures, the V-RQOL may have the greatest capacity to assess communication QOL in laryngectomees because of its robust psychometric testing (Franic et al., 2005; Hogikyan & Sethuraman, 1999) and its low burden to study participants, being only 10-items in length. Although the V-RQOL has been used in studies to assess the QOL of individuals with various voice disorders (Fung et al., 2005; Hogikyan et al., 2001; Rasch et al., 2005; Weinstein et al., 2001), its application may be pertinent to those treated for laryngeal cancer. Thus, as part of an ongoing long-term study by our group of those treated for laryngeal cancer, we wish to present some initial data obtained using the V-RQOL in those who use alaryngeal speech with a particular emphasis on identifying any differences that exist in physical and psychosocial domain scores of the V-RQOL. Additionally, we have sought to provide some initial information on potential gender differences for V-RQOL scores.


Methods


Participants


Ethical Review Board approvals were obtained prior to the commencement of this study. TL patients were identified and asked to fill out a measure of voice-related quality of life, the V-RQOL. In addition to completing the QOL tool, participants’ demographic information (e.g., age, sex, whether they underwent radiation therapy before and/or after surgery for removal of their larynx, etc.) was gathered. Eighty adults (54 males, 26 females) who had undergone a TL and who used one of three alaryngeal methods (EL, ES or TE) participated in this phase of the study. Of these participants, 46 used TE speech, 21 used EL speech and 13 used ES. The combined mean age was 65 years (range 40-83). All had completed treatment at the time of participation, were at least one month post treatment (range 1 – 348 months), and were in good general health. Informed consent was obtained from participants prior to completion of the instrument.


Measurement Instrument


The V-RQOL was administered following informed consent. The V-RQOL is a 10-item self-administered questionnaire, which uses a 5-point equal-appearing-interval scale for quantifying disability. Responses range from a “1” (“None, not a problem”) to a “5” (“Problem is as bad as it can be”). Six questions pertain to “physical functioning” (PH) and four relate to “social-emotional” (SE) functioning, thus, two domain scores (PH and SE), and a total score can be generated. Both domain and total V-RQOL scores were standardized to a scale ranging from 0 to 100, with lower scores reflecting reduced levels of voice-related quality of life (Hogikyan & Sethuraman, 1999).
Data Analysis


Responses were analyzed using the recommended scoring algorithm and transformation calculation for each participant. An independent t-test was initially conducted to determine if differences existed by gender. Separate analyses were performed on data obtained from the EL, ES, and TE groups. Based on results, no significant differences between men and women were observed in each group for PH and SE functioning domain scores as well as total V-RQOL scores. Consequently, data for each group were pooled in further analyses. All dependent measures (PH, SE, and total VRQOL) were analyzed for differences in scores across the three groups of alaryngeal speakers using a repeated measures analysis of variance.
Results


Data analysis revealed that the TE group demonstrated the highest PH and SE functioning and total V-RQOL scores (respective means 73.28, 79.89 and 77.17), followed by ES (respective means 63.46, 72.60 and 68.85), while EL speakers demonstrated the lowest V-RQOL scores (respective means 58.33, 57.74, and 57.74). Means for the two functioning domains and the total V-RQOL score are displayed in Figure 1. In addition, Table 1 displays group mean scores and standard deviations. Great variability exists in participant responses for each of the 10 items of the questionnaire.


In addition to descriptive statistics, a repeated measures ANOVA identified a significant difference in means across the three alaryngeal groups for V-RQOL scores (p=.002). Following the repeated measures analysis, a Tukey’s post hoc test revealed statistically significant differences between EL and TE groups for the PH, SE domain scores and the total scores (p=.002). Thus, the EL group demonstrated the highest level of self-perceived voice disability, while the TE group reported the highest level of voice-related quality of life. Overall, face validity of the V-RQOL in the alaryngeal population would appear to exist.


Table 1. Means and Standard Deviations for V-RQOL Domain and Total Scores Segregated by Voice Restoration Group

 

V-RQOL Dimension EL ES TE
Physical functioning 58.33 (23.50) 63.46 (21.05) 73.28 (16.24)
Social-Emotional functioning 57.74 (32.83) 72.60 (20.18) 79.89 (19.58)
Total V-RQOL score 57.74 (25.28) 68.85 (19.17) 77.17 (15.89)


Figure 1. Comparison of VRQOL Score Means Across Voice Restoration Groups

 

 

Discussion


This study provides initial data specific to voice-related quality of life of alaryngeal speakers. While the V-RQOL was initially developed to assess the quality of life of individuals who exhibit laryngeal-based disorders (Hogikyan & Sethuraman, 1999), it is our belief that the use of this tool can be extended to the laryngectomy population. Great inter-subject variability in item responses was observed for all 10 questions of the V-RQOL and this may relate to multiple factors (e.g., the wide range of postoperative time). However, the items of the instrument seem to capture relevant issues related to voice in alaryngeal speakers. In addition, preliminary statistical analysis suggests that the tool is able to discriminate between different voice restoration groups of laryngectomees. The questionnaire items also appear to cover a breadth of physical, social and emotional issues that relate to the alaryngeal population, exhibiting content validity. Collectively, our data suggest that QOL profiles of laryngectomees may indeed be quantified using the V-RQOL.


In addition to assessing the utility of the V-RQOL, the influence that mode of alaryngeal speech has on perceived levels of disability was also evaluated. Results of the repeated measures ANOVA indicate that there is a significant difference in self-perceived QOL across the three alaryngeal groups. However, post hoc analysis revealed that a significant difference was only found between the TE and EL group for both functioning domains and total V-RQOL scores. Consistent with past literature demonstrating decrements in QOL of individuals who use the electrolarynx as their primary mode of communication compared to other modes of speech (Finizia et al., 2001), results of this study indicated that this group exhibited the greatest level of disability. However, this finding cannot be interpreted to suggest that the EL is a lesser means of postlaryngectomy communication, but shows that some voice features may influence perceived voice-related functioning. In contrast, TE speakers reported the highest V-RQOL in both functioning domains and total scores. However, some TE speakers may also experience sufficient limitations in their vocal capacity and assumption that this method will always be better than other options is faulty. It appears as though decrements in physical and psychosocial functioning for TE speakers is minimized compared to the other groups. This quantitative difference may be attributed to the fact that TE speakers achieve communicative abilities that are more comparable to the normal population than the ES and EL group (Clements et al., 1997).


In addition to measuring differences in QOL across different voice restoration groups, an analysis was conducted to determine if there were gender differences in self-perceived QOL scores. Consistent with past research (Kazi et al., 2006), no statistically significant differences between males and females were found for QOL post-laryngectomy. Even though female laryngectomees experience a significant loss in voice frequency compared to normal female speakers (Kazi et al., 2006), having the potential to significantly reduce one’s QOL, the physical, social and emotional consequences of a laryngectomy seem to be comparable for males and females.


Summary and Conclusions

 


The results of this initial study demonstrate that: 1) the V-RQOL has potential applicability in the alaryngeal population, demonstrating content and discriminant validity; 2) the current sample of TE speakers demonstrated the greatest level of V-RQOL and the EL group exhibited the greatest level of disability; and 3) no significant differences were found in QOL scores across gender. Thus, when considering treatment options, clinicians should factor in the importance that the patient places on their voice problems and the impact that the method of speech rehabilitation may have on one’s V-RQOL. In closing, we believe that use of the V-RQOL can offer valuable insights into postlaryngectomy voice capacity and potential limitations. Therefore, the V-RQOL should be considered as a time-efficient method of monitoring voice functioning in those who use alaryngeal modes of communication. We are continuing this avenue of research with the goal of generating a larger-scale report on our findings in the future.


Acknowledgement


Support for this project was provided through a grant form the Interdisiciplinary Research Fund, University of Western Ontario (PCD). Additional support for this project has been provided by the Voice Production and Perception Laboratory, University of Western Ontario. Portions of this paper were presented at the Annual Meeting of the Canadian Association of Psychosocial Oncology, April 2007.

 

References


Amir, O., Ashkenazi, O., Leibovitz, T., Michael, O., Tavor, Y., & Wolf, M. (2006). Applying the voice handicap index (VHI) to dysphonic and nondysphonic hebrew speakers. Journal of Voice, 20(2), 318-324.


Bellandese, M. H., Lerman, J. W., & Gilbert, H. R. (2001). An acoustic analysis of excellent female esophageal, tracheoesophageal, and laryngeal speakers. Journal of Speech, Language, and Hearing Research, 44(6), 1315-1320.
Clements, K. S., Rassekh, C. H., Seikaly, H., Hokanson, J. A., & Calhoun, K. H. (1997). Communication after laryngectomy: An assessment of patient satisfaction. Archives of Otolaryngology - Head & Neck Surgery, 123(5), 493-496.


Deary, I. J., Webb, A., MacKenzie, K., Wilson, J. A., & Carding, P. N. (2004). Short, self-report voice symptom scales: Psychometric characteristics of the voice handicap index-10 and the vocal performance questionnaire. Otolaryngology - Head and Neck Surgery, 131(3), 232-235.


Deleyiannis, F. W., Weymuller, E. A., Jr., Coltrera, M. D., & Futran, N. (1999). Quality of life after laryngectomy: Are functional disabilities important? Head & Neck, 21(4), 319-324.


Doyle, P.C., and Keith, R.C. (Editors) (2005). Rehabilitation following treatment for head and neck cancer: Voice, speech, and swallowing. Austin, TX: Pro-Ed Publishers.


Eadie, T.L., & Doyle, P.C. (2004). Auditory-perceptual scaling and quality of life in tracheoesophageal speakers. Laryngoscope, 114 (4), 753-759.


Farrand, P., & Duncan, F. (2007). Generic health-related quality of life amongst patients employing different voice restoration methods following total laryngectomy. Psychology, Health & Medicine, 12(3), 255-265.


Finizia, C, & Bengt, B. (2001). Health-related quality of life in patients with laryngeal cancer: A post-treatment comparison of different modes of communication. Laryngoscope, 111(5), 918-923.


Franic, D. M., Bramlett, R. E., & Bothe, A. C. (2005). Psychometric evaluation of disease specific quality of life instruments in voice disorders. Journal of Voice, 19(2), 300-315.


Fung, K., Lyden, T. H., Lee, J., Urba, S. G., Worden, F., & Eisbruch, A. (2005). Voice and swallowing outcomes of an organ-preservation trial for advanced laryngeal cancer. International Journal of Radiation Oncology, Biology, Physics, 63(5), 1395-1399.


Hogikyan, N. D., & Sethuraman, G. (1999). Validation of an instrument to measure voice-related quality of life (V-RQOL). Journal of Voice, 13(4), 557-569.


Hogikyan, N. D., Wodchis, W. P., Spak, C., & Kileny, P. R. (2001). Longitudinal effects of botulinum toxin injections on voice-related quality of life (V-RQOL) for patients with adductory spasmodic dysphonia. Journal of Voice, 15(4), 576-586.


Hogikyan, N. D. (2000). Voice-related quality of life (V-RQOL) following type I thyroplasty for unilateral vocal fold paralysis. Journal of Voice, 14(3), 378-386.


Jacobson, B. H., Johnson, A., Grywalski, C., Silbergleit, A., Jacobson, G., & Benninger, M. S. (1997). The voice handicap index (VHI): Development and validation. American Journal of Speech-Language Pathology, 6(3), 66-70.


Jepsen, M. C., Gurushanthaiah, D., Roy, N., Smith, M. E., Gray, S. D., & Davis, R. K. (2003). Voice, speech, and swallowing outcomes in laser-treated laryngeal cancer. Laryngoscope, 113(6), 923-928.


Kazi, R., Kiverniti, E., Prasad, V., Venkitaraman, R., Nutting, C. M., Clarke, P., et al. (2006). Multidimensional assessment of female tracheoesophageal prosthetic speech. Clinical Otolaryngology, 31(6), 511-517.


List, M. A., Ritter-Sterr, C. A., Baker, T. M., Colangelo, L. A., Matz, G., Pauloski, B. R., et al. (1996). Longitudinal assessment of quality of life in laryngeal cancer patients. Head & Neck, 18(1), 1-10.


Loughran, S., Calder, N., MacGregor, F. B., Carding, P., & MacKenzie, K. (2005). Quality of life and voice following endoscopic resection or radiotherapy for early glottic cancer. Clinical Otolaryngology, 30(1), 42-47.


Nalbadian, M., Nikolaou, A., Nikolaidis, V., Petridis, D., Themelis, C., & Daniilidis, I. (2001). Factors influencing quality of life in laryngectomized patients. European Archives of Oto-Rhino-Laryngology, 258(7), 336-340.


Op de Coul, B. M. R., Ackerstaff, A. H., van As, C. J., van den Hoogen, F. J. A., Meeuwis, C. A., Manni, J. J., & Hilgers, F.J.M. (2005). Quality of life assessment in laryngectomized individuals: Do we need additions to standard questionnaires in specific clinical research projects? Clinical Otolaryngology, 30(2), 169-175.


Oysu, C., & Aslan, I. (2006). Cricohyoidoepiglottopexy vs near-total laryngectomy with epiglottic reconstruction in the treatment of early glottic carcinoma. Archives of Otolaryngology - Head & Neck Surgery, 132(10), 1065-1068.


Rasch, T., Gunther, S., Hoppe, U., Eysholdt, U., & Rosanowski, F. (2005). Voice-related quality of life in organic and functional voice disorders. Logopedics, Phoniatrics, Vocology, 30(1), 9-13.


Sewnaik, A., Van Den Brink,Jaap L., Wieringa, M. H., Meeuwis, C. A., & Kerrebijn, J. D. F. (2005). Surgery for recurrent laryngeal carcinoma after radiotherapy: Partial laryngectomy or total laryngectomy for a better quality of life? Otolaryngology - Head and Neck Surgery, 132(1), 95-98.


Weinstein, G. S., El-Sawy, M. M., Ruiz, C., Dooley, P., Chalian, A., El-Sayed, M. M., et al. (2001). Laryngeal preservation with supracricoid partial laryngectomy results in improved quality of life when compared with total laryngectomy. The Laryngoscope, 111(2), 191-199.

 


 

 


 

Ships that Pass in the Night (or on WebWhispers )

 

In the spring of 2002 I received an email from a woman in Pennsylvania whose significant other had had a laryngectomy and was experiencing some problems in using a voice prosthesis. She had read my bio on WebWhispers and felt we had some things in common in that we shared a first name, and I had lived in Kentucky for many years while she was a devotee of Bluegrass Music.  I responded and was able to answer some questions for her during her journey as a caregiver. Unfortunately a recurrence eventually resulted in the death of the laryngectomee. Despite that sadness and loss, our friendship survived through the years via email and a rare telephone call.

Eventually she developed a relationship with another delightful gentleman who came to my community on business and took the “other” Mary Jane to dinner. It was immediately like seeing an old friend despite the fact that the two Mary Janes had never met face to face.

In April of 2006 I had to attend a meeting in Baltimore, not that far from the Pennsylvania residence. I met my long standing friend face to face for the first time in a hotel lobby! Not only was recognition easy because John was with her, but she was carrying the award for the bet I had won on a Colts football game—a bottle of Bombay Sapphire tied with the black and gold of the Steelers.  It was like taking up where we had left off years ago! The friendship has flourished through the years. More recently the Pennsylvania Mary Jane faced another caregiver tragedy when John was diagnosed with and ultimately succumbed to Multiple Myeloma.

When the son of co-workers of mine in Indianapolis was diagnosed with lymphoma and Mary Jane learned of it, her local church immediately began regular prayers for the 5 year old. His mother was strengthened by emails from Mary Jane who rejoiced with us in Indianapolis when Alec’s long and arduous journey with chemo was declared a success.

 I have known Mary Jane’s two year old grandson, Daniel, from his first picture in the hospital! His frequent antics and pictures have captivated me. I have loved seeing videos with Daniel waving to this Mary Jane. I have met the Pennsylvania Mary Jane’s large extended family from emailed pictures of family gatherings and celebrations—a new experience for someone with no extended family.

Finally this month through her generosity via a plane ticket I went to Pennsylvania to meet my treasured friend face to face for only the second time, along with being introduced to the extended family I had known through pictures. There are no words to describe that experience!  Did you know that there is an annual Squirrel Festival?  I know because I have been there.

Mary Jane met me at the Harrisburg airport and transported me to a wonderful Bed and Breakfast at the foot of a mountain. The Pennsylvania countryside was in its most colorful mode with orange, red and gold trees dotting the beautiful rolling hills and mountains!  It was then on to the “Cousins’ Lunch” with relatives from far and wide who all seemed to know me from pictures and videos. It was amazing to be in the midst of this extended family that literally gathered from all over the country. Two of the day’s highlights were riding a horse and a horse driven cart ride on the part of all the younger cousins. Their smiles will light my days for a long time!

Saturday morning brought a day at a local Octoberfest with introductions to more friends, time watching Daniel enjoy everything in sight and spending time in the beautiful country on a breathtaking fall day. Later in the day I was introduced to the family highlight—the Squirrel Festival at brother Andrew’s home with a view that cannot be described for its beauty.  Squirrel hunting, log splitting, food and more and more relatives are the theme of the day. The high point is the drawing for “Jay” a stuffed squirrel—the recipient gets to keep him for a year with the commitment to return him on the next festival day.  Long story, short—I was the recipient of Jay! Being afraid that travel would be damaging, Jay is spending the year with the Pennsylvania Mary Jane, but I am committed to returning next year to pass Jay on.

Sunday morning I attended services at a beautiful little Presbyterian church that had offered regular prayers for my co-workers’ son. I felt so much at home and so welcomed by members!

On Monday I got some individual time with my adored Daniel who was most interested in pressing my “button” to enable me to talk! We even got to go to an orchard where I bought some of my favorite apples that I used to have in my New York hometown years ago.

All things must come to an end, as did my fantastic trip to spend time with the other Mary Jane, who got up before the “crack of dawn” to take me to the airport. I will treasure every moment and look forward to next year. I returned to Indy with the memories of a new family that I love.

I share this experience to say to those of you meeting people on WebWhispers that you will never know how valuable these experiences may be to others and to you!  Do not take lightly what you read in messages or in your responses! I am so grateful for the friendship that was forged on my WebWhispers bio—I know it will last my lifetime! I now have an extended family that has so enriched my life! I can only wish that some of you will enjoy such a wonderful journey.

 

Mary Jane Renner, MSW
Indianapolis, Indiana
October 2010
 

 

 

 

 

Getting By With A Little help from Our Friends


The best part of an old friendship, even one where you only connect sporadically, is the shared history. It makes it so much easier to catch up or tell a story or even ask a question. They already know the background. As we get older and our history longer and generally more complicated, it becomes harder to make new friends. You really have to start at the beginning and nowadays, that takes time! I have made several new friends lately, ranging from a neighbor, to another nanny/granny to a cousin’s new girlfriend and while I am thrilled to get to know these women, there is a certain awkwardness as we try to get up to speed with one another. How many of life’s bumps do we reveal, and when? Those rough patches probably shaped us as much, if not more than the times we had smooth sailing, but they can be difficult to work into a conversation in the back yard while the kids play on the swings. There really is no easy seguing in or out of “I didn’t go to college because I joined a religious cult when I was 18 and didn’t leave until I was nearly 29”. While my story may be a bit unusual, everyone has something or other and it takes a while to cover enough of the past to really begin to know and understand the person of today.


Friendships made through WebWhispers are unique. We all come from different backgrounds, but share a singular experience. Even though, as we are often fond of saying, when it comes to advice and information about lary life, we are all different, we are all alike in some unusual ways. Surviving cancer, breathing through a hole in one’s neck and learning to talk again are significant and life altering events. The friendships made here are so special because we don’t have to explain all that. It’s like discovering old friends you never met before.


This month, our Guest Columnist, Mary Jane Renner writes about just such a friendship that has blossomed over the years. It is a wonderful story and I know there are many more out there. We would love to hear about them. Please write to us at editor@webwhispers.org and we can publish them in Whispers on the Web in the coming months. As Mary Jane notes, it was something she wrote for WW that sparked the initial contact and that has become a very special friendship, even though the two Mary Janes rarely see each other face to face! Writing about a treasured friend is a wonderful way to celebrate that relationship and, who knows, may even spark a new one.

 

 

 

 

 

What’s a Tokyo?



Recently a WebWhispers member asked this question, which indicates no one had ever mentioned this particular artificial larynx (AL) device as an option for this patient to consider. Decades ago Doctors James Shanks, Eric Blom and Bernd Weinberg seemed to agree that “early presentation of all options, including ES, ALs and surgical approaches, are helpful while learning ES and rehabilitation for serviceable speech for work purposes and social speech”.


The Tokyo may not have been this WW member’s ultimate choice, but it would be an advantage to know a little about the pneumatic ALs, and how they work. Why? Well, for one reason, it’s a matter of discovering the role vibration plays in voicing. I will address that issue in a future column. It is helpful to know how all the options work similarly. Knowledge is power, so let’s start at the beginning.


The Tokyo is an artificial larynx (AL) device. It is called a pneumatic because it is powered by lung air. Batteries are not needed in this case, as they are for electro-larynx used on the neck, cheek or intra orally. Another WW member asked if you need a TEP to make the Tokyo work? The answer is no; there is no need for a TEP. However, a person with a TEP can use a Tokyo, if only for demonstration purposes when speaking to a class.


Pneumatic ALs use lung air only to vibrate the reed, or diaphragm, that is located below the plastic straw. The straw is placed inside the mouth to one side and the tip is aimed toward the roof of the mouth so it doesn’t fill with saliva or get caught on the tongue. Below the straw and reed there is a cup that is placed over the stoma to capture the exhaled air needed to operate this device. These images are courtesy of Mark Welch.

 
Tokyo Sound Sample


Two models that were discussed recently in WW daily postings are the Tokyo (metal), and the Osaka (white plastic) aka Yamamura. Similar to tissues, regardless of brand names such as Kleenex, Scotts, or Puffs, they all end up being referred to as Kleenex, so do the pneumatic devices all seem to end up commonly called a “Tokyo”. There are several other similar designs that have been manufactured. The Tokyo is still made in Japan. There is also the Japanese made Osaka, the Van Humen made in the Netherlands, and the Neher made in the USA. (I don’t know if the last two are still available.) There are other similar white plastic devices made in Taiwan and Korea.


Since I promised to dig a little further into the history of the pneumatic artificial larynx I listened again to the CD Mark Welch sent to me. Mark Welch is the current US distributor for the Tokyo, having taken over the business for his father, Clyde (Seede) Welch. This time I took notes as I listened. The title “Tokyo Artificial Larynx” is from an interview with Red Woodward and Al St. Germaine. It was filmed in the late 60’s or early 70’s. Mark copied it all from 35mm film to Beta tape, from Beta tape to VHS tape to CD. The quality is fairly good, but there are a couple rough spots due to the age and deterioration of the film. The messages and voice quality of these two fellows using the Tokyo ,as well as Al’s esophageal speech, are impressive.


In the 1950’s Al (Alfred) St. Germaine was an electronics engineer when he became a laryngectomee. After he resigned his engineering job post op, he went to work for the US Navy as a civilian electronics engineer aboard ships to operate their radar, etc. His esophageal speech (ES) was not well developed at this stage of his rehabilitation. He points out that ES was so much in vogue at this time that even the IAL frowned upon electro larynx use. He wanted to find a way to communicate between decks with the Captain on the phone. This led to his idea for the Tokyo. It was after a New Year’s Eve party while the ship was in the Yokohama and Kobi area that he saw lots of party horns lying about in the post party mess. He took a few apart and figured out how to use the reed with a nipple and a straw to make the Tokyo design. He explains that he took this simple proto-type of his invention to the Japanese equivalent of the American Cancer Society asking for their help with a way to manufacture it for other laryngectomees to speak again. He didn’t speak Japanese and they had trouble understanding his English. This is about the time that Al met Rev. Yamamura, who was a speech instructor at the Cancer Society in Japan. When Al St. Germaine arrived back in the USA he became an alaryngeal speech instructor and consultant at the VA in San Francisco and San Jose. He taught only ES, EL & AL use since this period of time was well before TEP was introduced.


Red Woodward was a musician. Post op he continued to lead his 12 piece dance band he was so proud of. On the CD he played a flute with a cup attached to the mouthpiece that fit over his stoma. He relied on the Tokyo for speech, and he sang a couple of songs. He pointed out that he was able to get six tones using his Tokyo. Red was also a distributor for the Tokyo for several years.


I also turned to the reference books in my own library to see what my mentors had to share in their texts from 1970 and 80’s about pneumatic options. I have two reference books that were published to record the proceedings of the Mayo Clinic Laryngectomee Rehab Seminars. I attended several of these seminars from 1979 to the mid 80’s. In these volumes I found a good deal of background information about the origin of these devices, and how they evolved.
“Laryngectomee Rehabilitation” Second Edition by Keith & Darley has an opening chapter that provides a history by Dr. Shanks and Robert Keith. Briefly, under Historical Highlights of Artificial Larynxes they begin with the first design in 1859 that was created for an 18 year old girl who had been tracheotomized because of laryngeal stenosis. That chapter also includes a careful description of the progression of developmental changes in pneumatic designs in several countries over the years.


Without recounting a long list of similar pneumatic designs, it is worth noting that in Warren H. Gardner’s, “Laryngectomee Speech and Rehabilitation”, he states that in ”1925 - Bell System became concerned with this area of communication, which led to the development of an instrument that employed rubber bands stretched in a manner to simulate the vocal cords. Shanks and Keith include “1926 - the Western Electric Pneumatic Artificial Larynx was introduced.” The long list of inventions and designers is fascinating reading with some interesting historical events tucked in along the way.


Since electro-larynx have replaced the pneumatic artificial larynx in the USA, I thought you might like to know that according to the historical list: “1942 - Wright probably should receive the credit for the first electro-larynx. The device was known as the Sonsovox (which also let the train ‘talk’ in the Walt Disney movie, Dumbo) “


I received permission from Mark Welch to share this email he recently sent me with you all:


I found an old pamphlet written by Red Woodward where he first introduced himself as the new distributor of Tokyo because Al St. Germaine has decided to retire. Red wrote…"Alfred St. Germaine - American Cancer Society Speech Therapist, Tokyo Aid Designer/ developer with the Japanese manufacturer". (This pamphlet was written on January 1977).


Based on Red's & my father's accounts, what I can see is that Al had an idea for pneumatic speech aid. He brought his idea to the Japanese equivalent of cancer society and worked with them in the development of the early version of the Tokyo. Papa mentioned AL worked with a Christian doctor. Is that Yamamura? Not sure.
My father said, he believed that Al got the idea in the 50's, but can't verify because he was not there. He cannot also say when the device was completely developed. As far as he remembers Al was already selling the Tokyo prior to the 60's.


Was Yamamura the first to introduce the early version of Tokyo in the US? Well, I'm leaning towards Al. Can't find a reason to doubt his words. Maybe Yamamura was the first to introduce the Tokyo in IAL who knows? Wanna play history detective? LOL


Did Rev. Yamamura borrow the concept and develop his own less expensive model? I don't know. What I do know is years back there were several versions of pneumatic artificial larynx available. My father bought 3 (aside from Tokyo). One is called Okumura's Artificial Larynx. The other two I have no idea what is their name. It has only the country of origin, which is Taiwan & The Netherlands. All of them are made of plastic. My father was not impressed with their sound quality. One thing we learned about plastic cup/base, it doesn't produce a good sound quality as Tokyo with the chrome metal base. That is why my father ditched them.


Years back my father & I did try to make all plastic version of Tokyo, but we gave up. We're not happy with the sound quality. Plastic produced a hollow sound. Lack of funds my father decided to quit experimenting. I don't know if with today's technology there is different type of plastic that is better.


Thank you very much for your non-biased assessment of the Tokyo Artificial Larynx.


Got to go. Have fun digging. LOL


Mark www.limcosolutions.com


Check out the above link to Mark’s Tokyo website for more pictures and information.


Elizabeth Finchem
 

 

 


 

2010 WebWhispers Cruise to Alaska

Pat Sanders
Photos taken by Pat Sanders and Fred Armani

 


We sailed from Seattle about dusk on Sunday with a ship that was open and ready to feed, entertain and pamper us. We had been separately boarding all afternoon, getting settled in our staterooms, wandering around and checking out some areas of the ship. With an early dinner hour, we had about half our cruisers at dinner the first night and it was good to start putting names with faces.

On Monday morning, at sea, We had scheduled a before lunch meeting for the purpose of getting acquainted, having Peggy fill us in on where she had found good shopping and to answer questions about the itinerary. I also wanted to announce the 2011 cruise that is now listed in the cruise site on WW. Ed Chapman had been busy for weeks with the planning of having T-Shirts, printed with the large WW logo, and he got them in just as he was ready to pull out of the driveway from home. He brought them along to display at the meeting. People who gave donations to WebWhispers (You know we run on donations!) were given a thank you gift of a T-shirt.) Then, off to lunch, and exploring the ship. Some were already shopping or sunning as the weather was great.

 

 

On shipboard, the place we are usually found is around a table.. at breakfast in the buffet, a choice of places and times for lunch and dinner in the dining room for most of us in the evening. Monday evening was dress night so a good photo time.

 

By 7AM we were moored in Ketchikan and our cruisers were getting off the ship for early tours to see how totem poles are made, watch the salmon swimming upstream and making a trip through Dolly's.

 

 

Then our cocktail party ending with a group picture and a few shots of the last port. Victoria. I like the Mattoons in 484

 

Note from cruiser, Vicki Metz:

Our Alaskan Cruise with WebWhispers was great. Meeting new people and seeing, again, people we already knew, was fun. The ship was wonderful with the food, service, shows, and shipboard activities. But we came to Alaska to see the scenery and it was magnificent. Traveling between mountain ranges was awesome. Not a lot of snow in September but he weather was beautiful (we were expecting more rain this time of year). We took a bus tour to the top of a mountain in Skagway which was great. We took a fun tour in an old fashioned bus in Skagway around town and to see a cemetery that had a lot of fun history with our period dressed guide. Also saw porpoises alongside our ship a couple times, and a whale in the distance.

 

 

 

 


 

THE FUNNY SIDE OF CANCER

(Or - They never warned me of the wind.)

 

I realised that I had lost my voice.
"Laryngitus " the general cry.
" Go to your doctors, you have no choice."
That wisdom, I could not deny.

First Doctor Busk, then Mr Sharpe,
who told me the astonishing news.
"Spindle Cell Cancer,afraid it's a harp."
Whispered quietly, giving me clues.

The surgeon gently, then had a look.
On his tip-toes, he peered down my throat.
" Do you tomorrow," as my pulse he took,
and his pen wrote a copious note.

He was, as good as his word,
he gave me back life and breath.
Slowly but surely those robotic words stirred.
I had side-stepped, that premature death.

I now force air, through the valve prosthetic,
but only half of it comes out of the mouth.
The words formed are quite pathetic,
the other forced air travels South.

With one's stomach distended, your grotty,
and the passing of wind a disgrace.
In song I could be Pavarotti,
if that valve was in the right place.

 

 

 

 


 

My First Year As A Laryngectomee

 

Part I: Pre-laryngectomy surgery

 

When I was first having problems with a sore throat, my doctor was not worried because I had never smoked. With about a month of taking throat cultures and treatments with antibiotics, the symptoms did not go away.

I was sent to an ENT for an exam and was immediately referred to an Otolaryngologist. At the initial visit he recommended I get a biopsy and we scheduled it for the next week. It was indeed cancer of the vocal cords and he initially scraped the vocal cord and said it should be treated effectively with radiation. This took place in May of 1989.

In July, I started the standard 35 days of radiation. I decided to go through the radiation early in the morning so that I could still go to work after the treatment. The routine was to leave at about 6:30 AM and drive 45 miles for the treatment at 8:00 AM. By 9:00, I was on my way to work. This went on for 7 weeks. I was still able to work, but my efficiency was low.

The radiation seemed to be going well and the tumor was shrinking. Everyone was happy with the results. My voice was much stronger and everything with work and family was good. As Thanksgiving was coming, my voice started to fade again. This time the surgeon told me he wanted to take another biopsy. The biopsy showed the cancer was till there. It was small and we decided to wait to make a decision for the next step. In December, at a follow up visit, I was told it was a very aggressive cancer and the larynx had to come out. The surgery was scheduled for January.

Needless to say, I was devastated. The family was scheduled for a visit to Florida over the Christmas break. The surgeon thought it would be good to take the trip and we would schedule the surgery for January. We went on the trip but I was downbeat the entire time. While down there, I thought I should have sent the family and stayed home.

On the beach, I worried more and more about how I would take care of the family. Our daughter was a junior in high school, and our son was a freshman. How would I pay for college? How would I support the family? Would I be able to work any more? Could I still pay the families bills? How could I breathe with a hole in my neck? Is the brain smart enough to know how to get oxygen through the neck and not the nose? (What really stupid questions now that I know better.) I kept to myself most of the time and could see that I was affecting the family.

When we got home in early January, I decided to look at this in a positive light. My religion and prayers kept me going. While not looking forward to the operation, I accepted the inevitable. Now it was time to schedule the pre-op testing.

On the day of the pre-op testing I was not exactly in a positive mood, but was resigned to making the best of things. When I got to the hospital, I started with the normal pre-op testing. First a nurse took my medical history, then I world get lab tests, x-rays and an EKG. The medical history was a snap. Next was X-rays and I was still doing fine. I have always had a phobia with blood tests so I stared tensing up, but I made it through better than I expected. Now for the EKG and then go home. As I was getting wired for the EKG, the nurse took out her electro-larynx and started explaining what she was doing. At that point I lost total control and started feeling my heart pounding. It was a sign of things to come. She spent over 30 minutes calming me down so that she could take the EKG. Told me of the capabilities of the surgeon and that he was the same one that operated on her 3 years prior.

Finally I was calm enough to get the test and found that I had made a new friend. What a way to have a pre-surgery visit with a laryngectomee. After the surgery she would visit me in the hospital room and make sure I was doing well.

Next step was to schedule an appointment in the doctor’s office with a laryngectomee and a speech therapist. This was all coordinated by the surgeon’s nurse practitioner. A laryngectomee who had surgery a year before, came to the meeting and answered most of my questions, although I don’t think I was really listening to the answers. He followed through with a series of phone calls to keep my spirits up. The speech therapist talked about speech options that would be available to me. An electro-larynx could be used right after surgery and I could start learning esophageal speech shortly after that. The option for TEP speech was offered as something that would be available in about a year’s time. The surgeon was very conservative and did not want to add complications to the surgery because of the dose of radiation that was taken only 6 months before.

The surgery was scheduled for January 31, 1990 – a date I would never forget. This required me to be admitted to the hospital the day before and surgery was scheduled for 8:00 AM. January 30 was my son’s 16th birthday, so we decided to have his birthday dinner in the hospital. We called to have Chinese food brought in and the nurses set us up in a room they had available. I had trouble not thinking that this was my farewell dinner with the family although we all ate and enjoyed the event. Everyone was upbeat and positive. My son decided he could ask for a sweet-sixteen birthday party like his sister had 2 years prior. He must have sensed he could get anything he asked for at the point. But he did not know that it was positive for me because we were planning an event for the future.

We said our good-byes and I went to my room to prepare for the next day. They must have given me some good medication because I slept well that night.

The next morning my wife was there early so we could have some time together. They came to get me and my wife walked with me to the operating room. She gave me a kiss just before I was wheeled in.

 

Len Librizzi, Webmaster
 

 

 

 

 

I Left My Larynx in Indy



Since I have never been to San Francisco, I did not leave my heart there. However, ten years ago today I did leave my larynx in Indianapolis. It was no longer my friend and was attempting to strangle me. So on the advice of my ENT’s, Doctor Jonathon Schmidt and Doctor Paul Righi, I made the decision to become legally separated.

The process was performed by Doctor Righi and his very capable team at I.U. Medical in Indy and took a little over thirteen hours. I later apologized to my family and friends for their having to wait this long while I selfishly slept through the entire ordeal. I spent four more days in ICU.

Following the advice of my medical team, the day before I left the hospital, the dental team at the teaching hospital, removed all of my remaining teeth as it seemed that the ensuing radiation would take them anyway. It would be four weeks before I missed them, because I flunked my ‘swallow’ test and went home with a nasal feeding tube that would gain me the name of ‘Snufaluffagus’. In addition, with my still swollen face and, with 72 staples from ear to ear, a grandchild suggested that I should portray Frankenstein’s Monster for Halloween and sit on the porch in a rocking chair to frighten the trick or treating youngsters!

Four weeks after my homecoming, I returned to Indy and passed the swallow test. On the way home I stopped for my first not canned or injected food in over two months. It was to be at Steak and Shake on Binford in Indy and consisted of a Strawberry Shake and, (here is where I missed my teeth for the first time) Chicken noodle soup which I bravely tried to gum.

Since I was having my full dentures made at the I.U. School of Dentistry, in Indy, it was another 4 weeks and 4 trips to I.U. For fittings before I got my new fangs. The family took me to Texas Roadhouse for a steak. I determinedly ate my weight in peanuts and truly enjoyed a 12 ounce chunk of prime rib.

I finished radiation on January 3, 2001, got my TEP puncture while under anesthesia for a lung biopsy in March. The biopsy was because of a questionable spot which proved of no consequence.

Alive ten years later, it has been my fortune to have held in my arms, new grandchildren and great grandchildren and to have embraced life with a renewed passion.

I quote Garrett Phillips, a Methodist preacher who was a prolific writer of letters to the editor of a local newspaper many years ago who said:  “I am here and I am glad!”

 

Leland Smith 10/10/10
Sulphur Springs, IN
 

 

 

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 51 new members who joined us during October, 2010:

 

Edward L. Beaune
Hemet, CA
Dennis Blake
St. Petersburg, FL
Terri Blake - (Caregiver)
St. Petersburg, FL
     
Aidan Clohessy
Limerick, Ireland
Mike Cohn
Wheeling, IL
Todd Coleman - (Vendor)
North Liberty, IA
     
Darlene Cooper-Perez - (SLP)
Rocklin, CA
William E. Crawford
Berkeley, CA
Kenneth J. Davis
La Plata, MD
     
Michele Douglas - (Caregiver)
Baltimore, MD
Dennis A. Ewald
Niles, IL
Robert Fogle, Sr.
Sag Harbor, NY
     
Pradeep Goel - (Caregiver)
New Delhi, India
Irene Hallahan
N. Cape May, NJ
George Hampel
Waukesha, WI
     
Teresa Harris (RN)
Shreveport, LA
Kathleen Helton - (Caregiver)
Hillsboro, OH
Kennith Helton
Hillsboro, OH
     
Eugenia Hennessey
La Conner, WA
Michael Jerome Hennessey - (Caregiver)
La Conner, WA
Kim Hossell - (Returning Member)
Raleigh, NC
     
April Howe - (Caregiver)
Staten Island, NY
Patrick Howe
Staten Island, NY
Wilma Rae Husak
Yuba City, CA
     
Michael Jacobs
Jacksonville, FL
Leah Jaggers - (Caregiver)
Delphi, IN
Enrique Kadile - (Vendor)
West Allis, WI
     
Cindy Kust - (Caregiver)
Waukesha, WI
Allison Lazin - (SLP)
Atlanta, GA
Allan Lichtwald
Neshkoro, WI
     
Jamie Lindholm - (SLP)
Novi, MI
Jean B. McAloon - (Caregiver)
Mill Spring, NC
Timothy J. McAloon
Mill Spring, NC
     
Escoth (Coty) Moncrief
Sacramento, CA
Jim Moody - (Caregiver)
Lake Wales, FL
Laura Morrell - (Medical)
Maywood, IL
     
Briana Moss, RN - (Medical)
Fort Worth, TX
Theodora J. Oliver - (Caregiver)
Panama City, FL
William B. Oliver
Panama City, FL
     
Dave Palladino
MooreHaven, FL
Kanda Phatipatanawong - (Caregiver)
Bangkok, Thailand
Jovanovic'Radoje
Holon, Israel
     
Beth Rendell
Stuart, FL
Joe Scalione
Midland Park, NJ
Jim Speicher
Millsboro, ME
     
Tobi Sperry
Savannah, GA
Frank Sutton
Bishop Auckland, UK
Leah Temes - (SLP)
Cockeysville, MD
     
Roy Tremeer
Brentwood Bay, BC
Ed Wass
Hamilton, Ontario, CAN
Jocelyn Welk
Cadott, WI

 

 

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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