Shirley – Joanie was a friend of mine, we went to school together.
Speaker – Joanie was diagnosed with Lou Gehrig’s disease.
Shirley – I would talk with her on the phone and notice the slurring in her words. I would go to visit her and notice she was having more difficulty; this continued to a point where she was unable to talk and move. The only thing she was able to do was blink. We used to talk to each other with a letter board. I would point to the letter and she would indicate by blinking which letter she wished to use and we would spell out words. And I thought, there has to be a better way.
Speaker – Shirley Fredlund and volunteers from the Danbury Area Computer Society did find a better way. After finding the hardware and software necessary to help Joanie communicate more effectively they began a community fund raising drive to purchase the equipment. Joanie died however a few days before she got to use it, but because of her struggle many more people with paralyzing diseases are getting help.
Building hope in the blink of an eye
But now, in her early 50s, Joanie Margaitis was fading fast. Her limbs were withered and lifeless. She couldn't move. She could barely breathe.
All of it the collective fallout of amyotrophic lateral sclerosis, a terminal neuromuscular disease. The affliction is best known as Lou Gehrig's disease, in remembrance of the fallen New York Yankees legend.