World's First Broadcast on - "Management of Speech, Language and Swallowing Disorders in Huntington's Disease"     4/30/2003



 

PhillipHardt.com Uses
.com
for Web Design/Hosting &
Computer Tech Services

  VIDEO ADDED BELOW 12/22/11

In 2002 I contacted the National Center for Neurogenic Communication Disorders in Tucson, AZ and asked why they didn't have a Telerounds video on Huntington's Disease!  I had just looked at their website and was amazed at all of the other neurologic disorders they had previously completed training videos on since their inception in 1991.  Telerounds has become a forum for some of the nation's leading authorities in Neurogenic communication disorders to present their work via satellite broadcasts to more than 500 viewing sites throughout North America.  Recently, sites were also added in Australia and New Zealand and the video conference series has been adapted for sites in Western Europe too! 

The Telerounds series was created by Cheryl K. Tomoeda, MS, CCC-SLP, coordinator and producer of the video program, and University of Arizona professors Thomas J. Hixon, PhD, CCC-SLP, and Kathryn A. Bayles, PhD, CCC-SLP, when they were awarded a $6.3 million grant from the National Institute on Deafness and Other Communication Disorders (NIDCD) to establish the National Center for Neurogenic Communication Disorders.

According to Dr. Katherine Ph.D., Associate Director, Institute for Neurologic Communication Disorders, Professor and Head, Department of Speech & Hearing Sciences, University of Arizona, the producer and moderator of Telerounds, the video conferencing series is similar in format to medical grand rounds. Clinicians and researchers present their current work in an hour-long video teleconference. The presenters work from scripts which are peer-reviewed three months in advance of the airing, she said.

The person I was lucky enough to speak to when I called was Cheryl K. Tomoeda MS, CCC-SLP, herself, who is also the senior research specialist in the Department of Speech and Hearing Science.  Cheryl replied that they didn't because they didn't know enough Phds who had Huntington's Disease (HD).  I told her not to worry because I did and I would love to help them organize the next Telerounds broadcast on the speech and swallowing problems associated with HD!

They were flabbergasted, and couldn't believe me, when I first met with them, and told them that they would not find anything on this important subject that had been done before.  They couldn't believe me but soon found out for themselves that the field was white for harvesting.  She later asked me to help write a letter justifying the need for such a video on the Speech and Swallowing Difficulties of those with HD.

After receiving a grant, Cheryl scheduled a meeting between me and Pamela Mathy, Ph.D., Director of Clinical Services, Department of Speech and Hearing Science, Arizona State University (ASU).  We met together several times and came up with a videotaping schedule at each Phds home!  I met with the Phd and their spouse/caregiver first, got permission, and then gave their addresses to Dr. Mathy.  She was such a great interviewer who immediately put everyone at ease and made them feel comfortable, no matter how bad their chorea or speech was!  While she interviewed each Phd, another Phd and I had the privilege of videotaping each of her seven (7) Phd participants.  We also had the privilege of being interviewed by her too!  (I sill have the original VHS videos of these seven (7) individuals that contain hours and hours of important interviews that has not been tapped yet.  I also have releases from everyone giving me permission to use them to help others with HD.  Please contact me if you would like to use this plethora of information for research purposes to help others with HD.)

I drove to Tucson the day of the broadcast to witness firsthand this groundbreaking broadcast!  On April 30, 2003 another dream of mine came true as the Telerounds video production of the "Management of Speech and Swallowing Problem in Huntington's Disease", was broadcast live to over 500 training facilities and hospitals across the U.S.!  Kathryn A. Bayles, PhD, CCC-SLP, one of the co-founders of the Telerounds program acted as moderator.

The Telerounds video production of the "Management of Speech and Swallowing Problem in Huntington's Disease has also been approved for self-study Continuing Education Units (CEU's) from the American Speech-Language-Hearing Association (ASHA)!

Comments by Phds in this video about hearing, noise and comprehension problems became the catalyst for the world's first Hearing and Comprehension study, also conducted at the U of A too!

Below is a concatenation of everything leading up to this groundbreaking video!

         VIDEO ADDED 12/22/11      LENGTH IS 1 HOUR  

 

 


One of the interview schedules I used for Dr. Mathy, noting the date and time of our meeting with the brave Phds and their families, who volunteered to be videotaped for this broadcast in their homes!

Pamela Mathy, Ph.D.
Director of Clinical Services

Department of Speech and Hearing Science
Arizona State University


HD Speech and Swallowing In-Home Interviews/Videotaping (revised)

Dr. Pam Mathy, PhD

Wednesday 3/19
3 pm

T. G.

Interview address:
Lew and Voncelle Frazier
2214 N. 82nd Street

Scottsdale, AZ 85257


Home address to mail release:

1744 W. Carol Avenue
Mesa, AZ 85202
480-945-8352

***********

also at 3 pm

P. A.

Accompanied by Donna - caregiver

Home address to mail release:

9809 N. 2nd Street
Sunnyslope, AZ 85020
602-331-1779




Phil Hardt 602-565-8792
Kathy Smith 480-354-3031
 


Date: Fri, 4 Apr 2003 18:45:32 -0700
Posted to Hunt-Dis
From: Phil Hardt <phardt1@COX.NET>
Subject: 4/30/03 Broadcast - Management of Speech,
Language and Swallowing Disorders in Huntington's Disease

Dear friends,

I know I've been quiet for many months but I've still been working hard on CARE projects!! I'm pleased to announce a special broadcast developed by the National Center for Neurogenic Communication Disorders titled:
"Management of Speech, Language and Swallowing Disorders in Huntington's Disease." While the primary audience will be Speech/Language Pathologists, family members and Phds may find it to be useful resource because strategies for managing these problems will be addressed.

I approached Telerounds two years ago and asked them to please put out a training video for HD on speech and swallowing. Well, it took two years the grants to be funded but now it has come to fruition! Over the last couple of month I have had the privilege of working with another talented and insightful Phd from the Phoenix area and helping Dr. Mathy interview and videotape 9 other Phds in various stages of disease progression. It has also been a privilege to work with Dr. Pam Mathy from Arizona State University and although she started out not knowing much about HD- she is extremely knowledgeable and sympathetic now to our plight!

I know this broadcast will help improve the quality of life and CARE for thousands of Phds as understanding of the disease and specifically speech and swallowing difficulties are discussed. This one hour video will present an overview of HD with a focus on the affects on communication, speech and swallowing. Even the many unique factors that are inherent to HD will be discussed such as chorea, tardive dyskinesia, loss of short-term memory, loss of ability to initiate communications (to name a few), and how they can adversely affect a Phd's ability to communicate and eat effectively.

You have a unique opportunity to view and tape the broadcast it you have a satellite dish and receiver. Videos will be available for purchase after the broadcast on the website and I hope HDSA will begin selling them too. I intend to have some with me in Houston too. Here is the announcement regarding the program and satellite information: (You can also see the previous training videos and handouts distributed by Telerounds by going to:
http://cnet.shs.arizona.edu/videos/telerounds/orderform.html. They continue to do a tremendous job in educating professionals and families who are dealing with Neurogenic disorders!)

Phil

"Please reserve Wednesday, April 30, 2003 from 1:00 to 2:00 p.m. eastern time for Telerounds 67. The title of Telerounds 67 is "Management of Speech, Language and Swallowing Disorders in Huntington's Disease," and will feature Dr. Pamela Mathy, Director of Clinical Services in the Dept. of Speech and Hearing Science at Arizona State University.

This program is being produced with the assistance of persons with Huntington's disease, who wish to help health professionals better understand and manage the conditions associated with this progressive neurological disease. Please join us for this special Telerounds!!"

Handouts for the broadcast will be available in a couple of weeks by connecting to the "Telerounds Download" link at:
http://cnet.shs.arizona.edu/telerounds/current.html

You must have access to a steerable satellite dish to receive this program.
The satellite coordinates are provided below.

NATIONAL CENTER FOR NEUROGENIC COMMUNICATION DISORDERS
(http://cnet.shs.arizona.edu/)
University of Arizona
TELEROUNDS - #67
Management of Speech, Language, and Swallowing Disorders in Huntington's Disease Wednesday, April 30, 2003

For technical information PRIOR TO 04-30-03 call Jeff Smelser at (520) 621-5875.
***TROUBLE NUMBER ON 04-30-03 call Jeff Smelser at (520) 621-5875***

To call-in questions during the TELEROUNDS program, dial (800) 841-5941.
To FAX a question during the TELEROUNDS program, dial (520) 621-8136.

TAPING: This teleconference may be taped for your institution's use only.

Copyright: April 30, 2003
University of Arizona Board of Regents
University of Arizona
Tucson, AZ 85721

 


CEU information found on the Minnesota State University  MOORHEAD website about this broadcast:


ABSTRACT

The purpose of this TELEROUNDS is to provide viewers with a description of the cause, diagnosis, and neuropathology of Huntington’s Disease (HD) and an overview of the clinical characteristics of the disease including the motor, cognitive and behavioral components and concomitant communication and swallowing disorders. The program will include an overview of the stages of disease progression with video illustrations of patients who have HD at each stage. Finally, the presenter will address guidelines for communicative and swallowing intervention across the stages of HD and present video illustrations.

OUTLINE

1.. Introduction
A. Purpose of the program

2.. Cause of Huntington’s Disease
A. Huntington gene

B. Inheritance pattern

C. Genetic testing

3.. Diagnosis of Huntington’s Disease
A. Diagnostic criteria

B. Age of onset

C. Epidemiology

4.. Neurobiology of Huntington’s Disease
1.. Basal Ganglia
2.. Direct pathway
3.. Indirect pathway
4.. Neurotransmitters
5.. Hyperkinesia (Chorea)
6.. Hypokinesia
1.. Bradykinesia – slowing and inability to initiate, maintain, or perform voluntary movement sequences
2.. Akinesia – inability to initiate movement
3.. Rigidity – muscle stiffness
5.. Clinical Symptoms
1.. Cognitive
2.. Behavioral/Psychiatric
3.. Communication disorders
1.. Dysarthria
2.. Language
4.. Dysphagia
6.. Stages of Disease Progression (Shoulson, 1981) and Alternate Stages of Huntington’s Disease (Pollard & Best, 1996)

 


NATIONAL CENTER FOR NEUROGENIC COMMUNICATION DISORDERS

University of Arizona

 

TELEROUNDS 67

SELF-STUDY CREDIT

MANAGEMENT OF SPEECH, LANGUAGE, AND SWALLOWING DISORDERS IN HUNTINGTON’S DISEASE

 

Pamela Mathy, Ph.D.
Director of Clinical Services

Department of Speech and Hearing Science

Arizona State University

 

April 30, 2003
 


ATTENTION:

 

  Information on Obtaining Self-Study CEUs from the

American Speech-Language-Hearing Association (ASHA)

 

The attached test is NOT for use when viewing a live TELEROUNDS broadcast unless you miss our deadline of May 23, 2003 for returning the ASHA CEU participant form.  It is ALWAYS required in order to receive ASHA CEUs if you view a videotape of a TELEROUNDS program.

 

In order to receive Self-Study Credit of 0.1 CEU from ASHA you must:

1.         Be registered with ASHA to receive CEUs.

2.         Complete an ASHA CEU Participant Form.  Forms can be downloaded from the following website: http://cnet.shs.arizona.edu/telerounds/forms/ce.html

3.         Provide your name and address on this form and answer the 5 multiple-choice questions.  You must pass the assessment with a score of at least 80% correct to receive credit.

4.             Submit these pages and the ASHA CEU Participant Form to the address below:

               TELEROUNDS
                                    National Center for Neurogenic Communication Disorders
                                    University of Arizona

                                    P.O. Box 210071
                                    Tucson, AZ 85721-0071

 

Note:          Forms for Self-Study Credit for this Telerounds will be submitted by the
   National Center for Neurogenic Communication Disorders to the ASHA CE
   Registry on

               August 1, 2003, November 1, 2003, February 1, 2004, April 30, 2004.



 

NATIONAL CENTER FOR NEUROGENIC COMMUNICATION DISORDERS

University of Arizona

 

SELF-STUDY CREDIT

 

TEST FOR TELEROUNDS 67

MANAGEMENT OF SPEECH, LANGUAGE, AND SWALLOWING DISORDERS IN HUNTINGTON’S DISEASE

Pamela Mathy, Ph.D.

Arizona State University

 

 

Name:__________________________________________________Date:____________

 

Address:________________________________________________________________

 

________________________________________________________________________

 
Email Address:_________________Phone:____________

 

 

If you are seeking Self-Study Credit of 0.1 ASHA CEUs, complete the Test ONLY if you viewed this TELEROUNDS by videotape OR if you viewed this TELEROUNDS  live and you missed the deadline for returning the ASHA CEU participant form to us. 

A score of 80% or better must be obtained on this test to receive self-study credit.

 

al" align="center" style="text-align:center">  

FIVE MULTIPLE-CHOICE QUESTIONS

 

Please circle the correct response for each item.

 

1.         Huntington’s disease (HD) is:

A.        transmitted through an autosomal dominant inheritance pattern.

B.        transmitted through a X-linked dominant inheritance pattern.

C.        transmitted through a X-linked recessive inheritance pattern.

D.        not genetically transmitted.

 

2.         Which of the following is true regarding the neurobiology of HD:

A.        the basal ganglia are brain structures most affected in HD.

B.        both direct and indirect motor pathways are affected in HD.

C.        acetylcholine, dopamine, and gamma-aminobutyric acid levels are affected in HD.

D.        all of the above.

 

Note:          Forms for Self-Study Credit for this Telerounds will be submitted by the
   National Center for Neurogenic Communication Disorders to the ASHA CE
    Registry on

               August 1, 2003, November 1, 2003, February 1, 2004, April 30, 2004.

 

3.         Characteristics of HD include:

A.         no cognitive impairment.

B.         progression of behavioral/psychiatric symptoms beginning with
 apathy and ending with irritability.

C.         communicative impairments that include reduced ability to initiate
 conversation, reduced utterance length and complexity, and
 hyperkinetic dysarthria.

D.         all of the above.

 

4.         Potential communication strategies for patients in the middle stages of
            HD include:

A.        provide extra time for the person with HD to process and
            respond.

B.        determine the usefulness of low-tech assistive devices such as memory books, alphabet boards, and portable amplifiers.

C.        teach communication partners techniques  such as using multiple-choice questions, and simplifying or rephrasing statements.

E.        all of the above.

 

5.         Feeding and swallowing behaviors in mid- to late-stage  HD patients:

A.        may include tachyphagia, lingual chorea, uninhibited swallow initiation, and impaired respiratory inhibition during swallowing.

B.        may include manibular rigidity, inefficient chewing, and slowed oral transit.

C.        will likely respond to improvements in meal setting and preparation, positioning, and the use of swallowing maneuvers and cueing. 

D.        all of the above.

 


 Keep a copy of your response and CEU Participant forms (for your records) and send original forms to:

            TELEROUNDS  

    National Center for Neurogenic Communication   Disorders
           University of Arizona
                P.O. Box 210071
                Tucson, AZ  85721-0071

 

 


E-mail dated 4-9-03 from John C. Lincoln hospital in Phoenix, making sure the broadcast would be videotaped:

Subject: Re: Teleconference
From: Kathleen Carlson <[log in to unmask]>
Reply-To: Kathleen Carlson <[log in to unmask]>
Date: Wed, 9 Apr 2003 10:06:04 -0700
Content-Type: text/plain
Parts/Attachments: text/plain (19 lines)



Is anyone airing or taping a teleconference on Wednesday, April 30th titled " "Management of Speech, Language, and Swallowing Disorders in Huntington's Disease" telerounds #67. It is being aired by the University of Arizona at 10am -11am Pacific Daylight Time. Please respond to me off list. Thank you.


Kathleen Carlson
John C Lincoln Health Network
Grigg Medical Library
250 E Dunlap Ave
Phoenix, AZ 85020-2450


http://list.uvm.edu/cgi-bin/wa?A2=medlib-l;qh8e6g;20030409100604-0700B
 


From UofAnews.org I found information on Telerounds in general: 

Telerounds
Lights, cameras, action - for nearly ten years, viewers throughout North America have been "tuning in to Telerounds." Telerounds is an exciting videoconference series produced by the National Center for Neurogenic Communication Disorders at the UA. The Telerounds series is designed to meet the continuing education needs of speech-language pathologists and allied health care professionals who provide services to individuals with neurogenic communication disorders as a consequence of Parkinson's disease, Alzheimer's disease, traumatic brain injury, stroke, and cerebral palsy. Typically, during each live broadcast, a clinical scientist presents a client (or clients) with a neurogenic communication disorder in a video "grand rounds" session. During the hour-long program, viewers have the opportunity to call in questions about the case(s) or the topic being discussed. To date, 60 Telerounds programs have been aired, spotlighting the science and scholarship available at the UA.

http://uanews.org/node/4775

 


My copy of the "Management of Speech, Language, and Swallowing Disorders in Huntington's Disease!"

 

 


Handouts given at the broadcast and also when you ordered your copy of the video!
















Phil Hardt     phardt1@cox.net    602-309-3118
 

 
 
         
   

History of Service | About Phil | Contact Me | Suggestions | Volunteer | © 2011 C2bi