MDA Telethon


Telethon 2002
WGRZ-TV Buffalo


MDA 2002 Telethon Interview with Jodi Johnston of WGRZ TV 2
September 2nd, 2002

My Granddaughters Sara and Alissa Shinder are here with me today to tell about the“model of care” that Donna (my wife & Sara and Alissa’s grandmother),
received from the MDA  ALS Clinic of Buffalo New York , Directed By Dr. Carolyn Warner.

Donna was diagnosed with ALS (Amyotrophic Lateral Sclerosis), also known as Lou Gehrings disease in the Summer of 1997 and passed away on Valentine's Day 2001.

The girls would like to describe how their grandmother embraced the use of whatever  assistive equipment  was  necessary to enable her to be up and dressed in the clothes of her choice, every day , color coordinated of course , and to  continue  participating in  many of the things that she loved to do.

Such as Church , grandchildren’s dance recitals, baseball games, band concerts ,  school plays, or simply  shopping trips to the Mall.

She did not let concerns about being seen in public with  assistive equipment, deter her  in pursuing those activities , and in doing so  was able to participate in  many happy  “Extended Quality of Life Opportunities”, that Sara and Alissa would like to share with us today –  



Click on the Above or Below pics for full size

Click on the Above or Below pics for full size 

In order to keep Donna’s expressed prayer alive regarding helping others with what we have learned as the result of our journey with ALS ,  I attended the “12th International Symposium on ALS in San Francisco last November, and plan to attend the Medtrade (assistive medical equipment) Exposition in Atlanta in October. It is my hope that  by collecting additional information on “Assistive Equipment” and “Care Strategies” and combining  it with what we have learned , we can put together a simplified & expanding database of information that may be helpful for others.

Concluding comment :
Recently I read about an interview , where Michael J. Fox was asked if he would offer a phrase that might summarize his new book , titled -  “Lucky Man” and he responded with

            “Let me just say that you don’t know what you have until it’s gone, and you know even less about what may appear to take it’s place if you allow it."     - Michael  J. Fox

That quote summarizes the manner in which Donna addressed her Journey with ALS & “ her, if you allow it attitude”, resulted in achieving many “Extended Quality of Life Opportunities”,  for which we are very thankful.