Everything I read says that life expectancy is 3-5 years with this disease, I feel pretty good, only had symptoms about 6 months, I would love to hear from people who have beat these odds. I know I shouldn't be reading online but can't help myself.
Janie H:
You'll never find two PALS progressing their ALS at the same rate.
Everyone is completely different. In fact, someone here wrote that PALS are like snowflakes.
The 3-5 years life expectance figure is just an average based on the information collected on PALS by all ALS Clinics across the country.
There are some PALS that beat the odds and live longer than the 3-5 years average. If I'm not mistaken, the late Forum Moderator Al Pettit lived approximately 10 years with the disease. He was Limb-onset meaning he never developed Bulbar-onset.
When I was diagnosed ALS, in December 2011, the Neuro told my caregivers that I had a form of Bulbar-onset that was very aggressive and my life expectancy lied somewhere between 12-18 months (meaning I should be dead by Dec. 2012 to June 2013). Even when I'm not on very good shape, I'm still alive and kicking.
You see?
It's difficult to determine life expectancy of a given PALS. Some decline very quickly after diagnosis, some decline very slowly.
You could help a bit with decline, I was told at my ALS Clinic. They suggest a high fat diet, keeping weight, doing R.O.M. exercises, keeping your blood pressure low, etc.
I would add to that to take some supplementation. Although, I know it will not cure the disease but can help somehow slow the progression and they don't do any harm either.
I take sub-lingual Methylcobalamin (a form of vitamin B-12), coconut oil, and Melatonin among others.
Best regards,