Life Expectancy

[Janie H]

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.

 

[jacquie]

Hi Janie,
Try not to worry about the stats. Just enjoy each day! Life is good, the blue sky and green trees so glorious, the sound of the birds singing so full of hope! However, to answer your question from my personal experience, I had mild symptoms from mid-2009 until about April 2012. Since then it has moved quite quickly. I can no longer walk and my diaphragm is failing fast. Since I can't cough and clear my lungs, it is possible that a simple cold could take me out. I would consider it a blessing to go that quickly, rather than not until I can't move my arms or speak. But I submit to whatever the good Lord has for me, and am determined to enjoy each beautiful day. Wishing you the best!
Jacquie

 

[Nighthawk]

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,

 

[pearshoot]

careful nighthawk, I was called cruel on this forum for suggesting you could slow progression by taking supplements. since changed it to extending life expectancy. of course that was over 2 years ago. recent pals are now open to embracing supplements, thank goodness. my first post I asked what pals were doing that they thought was helping them. not one response plus being taken to the woodshed for the wording of the post. glad some attitudes have changed

 

[caldona]

There is people on here that has had als for ten to fifteen years don't judge your life by what doctors or anybody else just enjoy what you have. We have been given a death sentence but you will find that you will loose family and friends that has nothing wrong with them now.

 

[R9L13026]

Having been recently diagnosed myself, I've had the same question Its just natural. As a person with ALS we have to be careful that we don't fall into depression so dwelling on how long ALS is going to take its course isn't something easily talked about. So expect the usual answer take it day by day.

My thoughts for most ALS patients it takes living with the symptoms about 1 - 2 years before positively diagnosed. Then it depends on how the body is being attacked. If bulbar and UMN is more pronounced then I suspect the life expectancy is lower, but as mentioned by others each person will progress differently. I can think back and believe my symptoms started summer of 2009, I'm still walking though just barely, can't open a simple package of lunch meat, can't pick a package off the floor, or myself for that matter. The statics are out there and only 10 - 15% of PALS will survive 10 plus years. I believe I'm part of that 10% so I feel I can work for the next 3 years to retirement...

On another thread it was mentioned that a persons progression could be charted to determine that date after 3 or 4 visits to the neuro. I'm not so sure that we could be tracked so linearly. Good luck to you and don't forget, just take it day by day.

 

[Janie H]

Thank you all for you kind words, I am not depressed, I know where I'm going when the time comes, I go back to the neuro today and I guess it's just been on my mind, I know there is no clear answer, I will enjoy each day and work as long as I am able, the doc has me taking loads of supplements I have friends here to help when that dread feeling hits, it's not very often. Jacquie, I have trouble coughing sometimes, I too feel that a cold could do me harm, but it is all in the Lords hands, I will try not to look at stats anymore.
Janie