"Lost" World's First Hearing and Comprehension Study for HD Found!



 

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During the world's first Telerounds training video on "Speech, Language and Swallowing Disorders in Huntington's Disease (HD)," that was broadcast live by the  National Center for Neurogenic Communication Disorders on April 30, 2003, several of the very observant professors in the University of Arizona (U of A) Speech and Hearing Department noticed that several Phds mentioned that they had experienced problems with "noise" and with hearing and/or understanding others during their videotaped interviews for the broadcast!  Over the years, in the support groups I was over, I had also heard many, many spouses and caregivers complain that their Phds couldn't hear or wouldn't do things when they were asked, which was very frustrating to them too! 

The broadcast prompted Dr. Fran Harris to call and ask me for help in writing a justification letter that she could use to apply for grant money to conduct a clinical research trial on Phds to see if the root causes of these problems could be identified. 

I personally thought it was more of a comprehension issue but was very surprised to find out that the majority of those tested did indeed have hearing loss in the upper range which would adversely impact the Phd from being able to "physically" differentiate or correctly hear words ending in consonants.  I think this is really exciting and can help others to possibly compensate for this occurrence.  I could see that this had the potential of helping tens of thousands of Phds and their families have higher quality of lives worldwide.

Sadly, I was unsuccessful getting the study's results published, or the excellent training video of this on any National website for sale and distribution so it could begin helping families.  Below you'll find everything leading up to, and including Dr. Harris' PowerPoint presentation of the initial results, that she presented at our JHD and HD summer retreat in 2005!  Eighteen (18) Phds from Phoenix and Tucson participated.

 



April 21, 2002


To Whom It May Concern:

I am writing this letter to add my voice in whole-hearted support for the speech and swallowing TELEROUNDS training video on Huntington's disease (HD). I am one of the 30,000 individuals who currently have Huntington’s disease in the United States today. Unfortunately, there are over 250,000 more who are at-risk to inherit this degenerative brain disorder for which there is still no cure, nor effective treatment either. This is perhaps the biggest reason why a video like this is sorely needed now- there is currently nothing available to improve and enhance and quality of life for those currently suffering with HD, including HD-affected speech and swallowing problems on a daily basis. The positive impact that this video will immediately begin having in helping everyone to better understand and care for a patient or loved one with HD, and to help those who have HD to positively cope with these two issues will be immeasurable.

Understanding speech and swallowing problems will not only help to improve communications and quality of life but will also allow those with HD to enjoy their mealtimes more and the important socialization that occurs during them. Since there are over 500 individuals in our state with HD we will be able to draw from those at various stages to show real-life examples of both speech and swallowing problems and their potential solutions! Everyone associated with HD will benefit from this project- those who have it, doctors and caregivers alike.

If I can answer any other questions or be of any other assistance please feel free to contact me!

Sincerely,



Phillip J. Hardt
Person with HD
HDSA-AZ Board Member
2001 HDSA Person of the Year

480-814-0191

480-659-1404 (fax)
602-565-8792 (cell)

 



ATTENTION!

  • Adult participants who have been diagnosed with Huntington’s Disease are needed for research about hearing and brain function

  • Age range: 21 years and older

  • Time commitment: Approximately 6 hours total

  • Procedures: As a participant you will
     Have routine and more detailed hearing tests
     Have tests of speech understanding and cognitive ability
     Complete questionnaires about your hearing and general health

  • None of the procedures are invasive, and for most of them you will be sitting comfortably in a sound-treated room

  • PARTICIPANTS WILL BE PAID

  • TEST DAYS:

    Mon June 14, Tues June 15, Wed June 16
    Mon June 21, Tues June 22,
    Mon June 28, Tues June 29, Wed June 30

    For further information contact:
    Dr. Frances P. Harris
    Associate Professor
    Department of Speech and Hearing Sciences
    Telephone: (520) 626-7530
    Email: fpharris@email.arizona.edu (please put HUNT in subject line)

     

 



Everyone performing the testing was extremely nice and helpful.  They even provided refreshments to make the six hours of testing go a little fasted!  One of our Phds was already in a wheel chair so in order to accommodate him they had to build a special ramp to get him into the sound proof room for testing!  Several didn't have the stamina to do the entire testing in one day so they were graciously schedule over more than one day! 

 

Phd Hearing Study
Testing Schedule

University of Arizona
Dr. Frances P. Harris
Associate Professor
Department of Speech and Hearing Sciences
Telephone:  (520) 626-7530

 
Saturday 6/12
P. L.
K. D. (Control & Chauffer)

       Monday 6/14
S. B.
 

       Tuesday 6/15
B. M.
P. A.
Phil Hardt  (Chauffer)

      Wednesday 6/16
Phil Hardt (Participant)
 B. J.
 N. S.
 Phil Hardt  (Chauffer)

         Thursday 6/17
Control Participants

         Friday 6/18
Control Participants

          Monday 6/21
N. F.
T. V.
Phil Hardt (Chauffer)

     Tuesday 6/22
        S. O.
        P. H.
           G & L S. J. (Chauffeurs)

       
  Wednesday 6/23
         E. A.

          Thursday 6/24
          E. A.
          
          B. S.
          R. H.

                Phil Hardt (Chauffer)

         Friday 6/25
          D. S.
         

          Saturday 6/26

           M. P.
          L. F.

          
          Wednesday 6/30
           D. S.

         Friday 7/2
           D. S.

        Monday 7/26
           M. R.

          R. L.
          A. L. (Chauffer)

       Tuesday 7/27
          A. R.
          G. L. B.
        Phil Hardt (Chauffer)

       Wednesday 7/28
          A. L.
          J.  Y.
 



In addition, in order to reduce the three hour round trip drive time for everyone participating in the study, some of the researchers came to Phoenix to do conduct part of the cognitive testing here in the conference room of America Career Executives!

 

 Phd Hearing Study
University of Arizona
Dr. Frances P. Harris
Associate Professor
Department of Speech and Hearing Sciences
Telephone: (520) 626-7530


Cognitive Testing in Phoenix
Esther Kim, CCC-SLP
Doctoral Candidate
Department of Speech and Hearing Sciences
University of Arizona
520-982-9887 (cell)


at:
American Career Executives’ conference room
2400 E. Arizona Biltmore Circle, Ste. 2230
Phoenix, AZ 85016

Thursday 7/22
8:30 am
10:00 am
11:30 am
1:00 pm
2:30 pm

Friday 7/23
8:30 am
10:00 am
11:30 am

 


 

Phd Hearing Study Directions

University of Arizona

Dr. Frances P. Harris

Associate Professor

Department of Speech and Hearing Sciences

Telephone:  (520) 626-7530 or (520) 444-7477 (cell)

 

 Who:  M. R

     When:  Monday July 26th

 What Time:  10 am

 Where:   The University of Arizona, Department of Speech and Hearing Sciences

  Directions:  You will be coming to the University of Arizona,
                   Department of Speech and Hearing Sciences


From I-10 east, take the Speedway east exit, toward the University of Arizona.

Continue for about 3 miles to Mountain and turn right (The streets before Mountain are 1st and then Park)

At the next light, which is 2nd street, turn righ

At the second drive (Palm Dr), turn right. 

The Speech and Hearing Sciences building is on the SW corner of 2nd and Palm, so when you turn in, it is the building on your left.  Go down the stairs to the reception desk just inside on the right and ask them to call Dr. Fran Harris.  They will also have a parking permit for you! Please park where directed by Dr. Harris.  Her cell phone is 520-444-7477 if you run into trouble.

 

 

Cognitive Testing in Phoenix

University of Arizona

 

Who:  M. R.

 When:  Thursday July 22nd

 What Time:   8:30 am

 Where:  American Career Executives
2400 E. Arizona Biltmore Circle, Ste. 2230
Phoenix, AZ  85016 

 Directions: 
Please see attached map for directions from your home!

 

If you get lost or need help please call me at 602-309-3118.  Thanks for your participation and help in this very important study that will help thousands of those with HD!…….Phil 

 


 

Certificate of Appreciation

Awarded to:

M. R.

For participation in the world’s first Hearing and Comprehension Study for those with Huntington’s Disease, at the University of Arizona.  Your contribution is greatly appreciated and will result in improved communication,

understanding and quality of life for tens of thousands with HD! 

 

 



 
 



 
 






 


 



 



 



 



 


 


 


 



 


 


 


 



 


 


 


 



 


 



 


 




 


 



 


 


 


On April 19, 2005 I was privileged to give a PowerPoint overview of Huntington's Disease and the rationale we used for the development of the world's first speech and comprehension study in HD at their colloquium (academic seminar)!  Initial results were also presented and discussed by all of those in attendance!
 

Speech, Language, & Hearing Sciences, University of Arizona, Spring/Summer 2005 Newsletter, Volume 8, p. 7.
 


-----Original Message-----
From: Phil Hardt [mailto:phardt1@cox.net]
Sent: Thursday, July 21, 2005 8:54 AM
To: stevei@cox-internet.com
Subject: 1st ever hearing and comprehensions study for HD

Dear Steve,
It was great to see you at the convention again although I'm sorry we didn't get to spend much time talking! Marsha asked that I send this to you- here is a PP presentation on the initial results of the world's first hearing and comprehension study for those with HD. (You don't hvae [sic] to leave it in PP, what ever you think is best!)

We decided to do this study because of constantly hearing caregivers complain that their Phd couldn't hear. I personally thought it was more of a comprehension issue but was very surprised to find out that the majority of those tested did indeed have hearing loss in the upper range which would adversly [sic] impact the Phd from being able to physically differentiate or correctly hear words ending in consonants. I think this is really exciting and can help others to possibly compensate for this occurance [sic]. In addition, I don't think this was reported on, but another interesting detail was that the majority of the participants had lots of ear wax which could also affect hearing! Some had to have their ears cleaned out before they could even participate or they were afraid the ear wax would taint the results. Let me kow [sic} when you're finished and then I'd like to post to Hunt-Dis announcing it, if that's okay! Thanks for all of your help in getting this out to everyone!!!.....Phil

 


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

 
 
         
   

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