ALS (Amyotrophic Lateral Sclerosis) is a progressive and fatal neuro-muscular
disease characterized by a degeneration of motor nerve cells in the
brain and spinal cord.
The disease attacks the part of the nervous
system that controls voluntary muscle movement and nerve cells that
control muscles are gradually lost. Life expectancy is typically 2 to 5 years from time of diagnosis.
Despite years of research the cause of the disease remains unknown and there are no effective treatments available.
PALS (Patients with ALS) slowly lose all physical abilities, including breathing, eating and speaking abilities. Nerves deteriorate, muscles atrophy and joints become stiff.
Patients eventually require 24hr care and a ventilator and feeding tube to stay alive. All this happens while the mind remains unaffected.
About me:
My name is Chris Tolken and I was diagnosed with ALS in June 2011 at the age of 43. Within 12 months I have lost most physical abilities. I am paralyzed from my neck down and rely on a ventilator and feeding tube to stay alive.
I am very lucky though, I still have the ability to speak and a wonderful family taking care of me!
My wife:
My wife of 21 years is also my full-time caregiver. She is an inspiration to me and somehow keeps our family going through these enormous challenges.
Not many people realize how much strain this disease can put on the spouse of a PALS. Besides taking over all my chores she also gets to be my 24hr nurse.
She is truly an amazing person.
Facts:
- There is no known cause for ALS
- ALS is not contagious
- The median survival time from onset to death is 39 months
- Currently there is no effective treatment for ALS patients
- ALS can strike anyone, there are no social, economic, racial or ethnic boundaries
- Two out of every 100,000 people will develop ALS every year
- ALS mostly strikes people between 40 and 60 years old
Quote:
"So I close in saying
that I might have
been given
a bad break,
but I've got
an awful lot to live for."
Lou Gehrig New York Yankees
1939
My children:
My two young boys give me the courage and motivation to tackle each day positively. Every afternoon I can't wait for them to get home from school. We laugh and chat and carry on like nothing has changed.
Their young enthusiasm keeps me alive while deep down I can see this disease has made them a little more mature for their age.
