How Is Life Expectancy of Bulbar ALS?

Answer 1

I have been diagnosed with this.  I trying to find out what to expect toward the end.

Comments

No cure for ALS is known.. A medication called riluzole may extend life by about two to three months.Non-invasive ventilation may result in both improved quality and length of life.The disease can affect people of any age, but usually starts around the age of 60 and in inherited cases around the age of 50. The average survival from onset to death is two to four years.About 10% survive longer than 10 years. Most die from respiratory failure.
it's a tough disease. try to be positive , try to live everyday count.

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My husband was diagnosed on March with this disease Bulbar ALS, today the doctor ordered home hospice, he's struggling to breath, has frontal "something" dementia and he is becoming violent.

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cuz his brain is affected. my dad got this last year, same symptoms, we're still fighting. Pray for everyone who's suffering this.

Answer 2

What is real life expxency?

Comments

Depending on the staging, a couple of years, 3 years at most.

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When your getting very week can't talk and barley walk and you have bulber als going on 3 years how long do you have to live generally

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While the average life expectancy for limb onset ALS lies within 3 to 5 years, studies have revealed that about 20% of patients may live beyond 5 years, and about 10% of patients may live more than 10 years after being diagnosed with ALS. The studies reveal that prognosis is poor for patients who suffer from bulbar form of ALS. In case of bulbar onset ALS, the life expectancy is less than 3 years.

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My wife lived 25 months post-diagnosis, and frankly we both wished the last 3 months or so did not happen. My advice,focus on each day you get, your personal relationships. Your relationship with God, if you're a believer. We are all going to die one day; This harsh disease just puts an exclamation point on how precious TODAY is. I don't mean to sound harsh, just realistic and 20/20 in the hindsight of wasted time on false hopes, promises and cures while fighting the inevitable. GOD BLESS YOU AND GOOD LUCK.

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I have a brother who is now in his 5 year with als . He is 51 . Bed ridden still able to eat but lost movement in hands legs . I dred the day we get the call . He gets radicava infusions . At the age of 18 he got cancer ( lymfoma ) not its back again and ... so sad to  see him because it is sooo hard to understand him . He is very mean at times . It’s his way or the highway...but I find trying to talk to him when he’s that mean I just stay away .