Working to Provide a Better Quality of Life for the ALS Community
Just before turning 27, Frank Carlson had his whole life ahead of
him. His career was on its way, he shared an apartment with a friend,
bought his first brand new car. He had a loving family and friends, quite the
active social life, and had met that someone special. He was excited to
have become an uncle and was looking forward to the day he would be married and have
his own child. Things were looking good. Then Frankie started experiencing some
symptoms of vertigo, and he started tripping without any apparent reason. After being treated for minor infections and later going through a battery of
testing for more serious illnesses, Frankie was diagnosed with Amyotrophic
Lateral Sclerosis in March of 2001 just before his 28th birthday.
After the initial shock wore off, it was time to make some
decisions and deal with this unexpected new life one of an ALS victim.
There were many family discussions and decisions made, but perhaps the most
important one was made by Frankie rather quickly. Frankie had a passion
for life and was determined to continue to live as active and normal a life as
he possibly could. ALS was not going to take away his spirit.
During the next two years, the changes in his
abilities, and therefore his care, were constant. He was shocked by the
physical, emotional, and financial burdens that accompany this disease. Frankie
was very grateful that he had a close network of family and friends who were
able to assist both financially and physically with many of the home
modifications and assistive equipment he needed.
While personally battling this disease each day, Frankie
spent much of his time on the computer, researching ALS and available resources
... reading all he could find about the disease. He considered himself lucky in
many ways, and thought about other PALS who might not be as fortunate as he. He
decided that he wanted to invest his time and energy trying to find a way to
help improve the quality of life for other ALS victims. He started the
ALS Foundation for Life, a non-profit organization built on volunteers.
The mission of his foundation was to aid PALS and their families in
acquiring financial assistance for home modifications, medical equipment, and
supplies to help maintain a sense of independence and dignity. In a speech Frankie
wrote shortly before he died (read by his caretaker at a foundation
fundraiser), he said As my symptoms increased in severity, I began to realize
that I am fortunate. When I could not get up the stairs to get into my bedroom,
my family installed a chairlift. When I lost the ability to walk and became
confined to a wheelchair, my family was able to build a ramp for me to get in
and out of my home. When I lost use of my hands, I was able to use a computer
with special equipment. He knew how important these things were.
Frankie was able to realize some of his dreams. He continued to
experience and enjoy life; he had goals; his foundation was formed. He and
Marie were married and shared in the joy of the birth of a daughter, Emma. A
few short months after Emma was born, Frankie lost his battle with ALS on July
2, 2004. His memory, selflessness and mission remain alive through the
ALS Foundation for Life.