Life Expectancy Statistics

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westjlittle

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I'm sure everyone has seen (and been quoted) the life expectancy statistics for PALS. (i.e. 50% die within three years) I'm wondering whether anyone has access to a more detailed analysis.

I would like to know how they vary by age. For example, I'm 41. What is my life expectancy. I know it better than an 80 year old with the diagnosis.

Does it vary by gender? Onset area?

That's just a few examples, has anyone seen a more detailed breakdown?

Jim West
 

l2c

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I don't have the statistics, Jim but observation has me thinking that younger translates into longer......unless the ALS is bulbar and then with a ventilator that lifespan can be longer. I may be wrong but this is just what my personal observation has been.

My husband has had ALS diagnosed for two years and is 66. He seems to be getting worse more rapidly now. He had limb onset. His sister who was in her 50's lived 3 years and 8months after a late diagnosed. I wonder if he'll make it that long.
 

quadbliss

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Hi Jim,

One thing I know for sure, they don't count folks on vents. Once you are on a vent, statistically you are dead.

Mike
 

brooksea

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Well Mike I guess you can tell us all about the afterlife then! LOL :mrgreen:

Think they need to take a look at PALS that vent and include those statistics. It might help someone make a decision to vent rather than give up.
 

Icanmanz

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Hi Jim! All I know is that my son was diagnosed with ALS on March 29, 2006, and by June 3, 2007 he was gone to Heaven. Only our Almighty Father can come up with an answer.. May He bless you!

Irma
 

hboyajian

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I seem to notice that there is a huge variation in life expectancy that doesn't necessarily correspond to age (though this may be a factor), could be related to type of onset and rate of progression, and can be affected positively by measures such as a feeding tube and bi-pap use. I think the life expectancy statistics are counted from time of diagnosis rather than actual onset of symptoms, so this can be rather confusing especially if the symptoms were apparent for some time before an actual ALS diagnosis could be confirmed. Its also sometimes given as an average of years lived from diagnosis (2 to 5 years) rather than a range which might be more like a few months to 15 or more years. Is it true that some people live quite a long time with ALS even without a ventilator? I'm not sure about that. I heard about a study being done to see if bi-pap use started sooner than current common practice could extend life significantly. I think someone on this forum mentioned it some time ago. I am interested in the results, if and when they become available.
My own personal experience was that my dad lived 2 months after his final diagnosis. He had a feeding tube for 19 days of that time. He was told he might have a year or two of life, based on statistical averages (life expectancies after diagnosis), but that did not take into account that he had obviously apparent (misdiagnosed) symptoms for 2 1/2 years before diagnosis and some possibly related symptoms for an additional 2 years before that. I think it is extremely difficult to put a time frame on this. Unfortunately, some people advance very rapidly and it is not really known why.
 

Icanmanz

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hboy, I am so sorry to hear about your dad, Two months is such a short time. Of course no one knows after diagnosed. I'll say it again, only God knows when your time is up. My son lasted 15 months after diagnosed. The doctors told him 2 to 5 years, and what happened? He was gone in 15 months! These doctors DON'T KNOW! They are just guessing!

Irma
 

caroliney

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Doctors guessing on DX.

Amen to that. Only God knows when.

Appreciate all the information on this site. Wonderful people with more knowledge first hand. Mike, do you have a trach with your ventilator? How long have you been on the ventilator?

My husband is trying the ventilator for now with a mask and it seems to be working so far. Not sure he will have the trach at all, but that is his decision I guess. I am trying to respect his wishes what ever he decides.

Caroliney
 

westjlittle

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Hboyajian,

Coincidently, I am a participant in that study for early BIPAP use. I participate through the Univerisity of Colorado MDA clinic. The study is merely a pilot study for now. I think the number of participants is low.

I have had to go for respiratory testing every 8 weeks. They run the board of tests with me.

Depending on your start FVC %, will depend on when you get the BIPAP. IF you are >100% when you start the study, you would get one at 85%. (I think) I was in the other half. I started the study at 72% then when you drop below 60%, you get a BIPAP. Normally it is at 50%.

Based on a conversation I had with the researcher, they are also looking at other tests as an indicator of BIPAP need. For example, lets say your FVC is 80% but your diaphram is gone and you can't breathe lying down. Maybe the FVC test should be done while you are lying down.

Jim
 

quadbliss

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Hi Caroliney,

I have been on trach/vent for over 2 1/2 years. Prior to that I was on 24/7 Bi-Pap for 2 years. It is nice not to have anything on my face anymore. :-D

Mike
 

JACKIEMAX

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Bi-pap Vs. Vent

My Husband Was Dx In Jan. 07, But Symptoms Began In Jan. 06. He Has Now Had Als For Almost 2 Years. His Als Is Limb Onset So His Muscles Are Very Weak, Altho He Can Walk Slowly On A Walker. His Problem Is Respiratory Which Came On Him Quickly.

His Breathing Test Showed Up At About 70 % And They Put Him On A Reg. Bi-pap. Now His Breathing Is About 50% And He Has Been Updated To A Bi-pap That Mostly Forces Air In Him, And Forces Him To Breathe.

He Says He Does Not Want On A Trach/vent, As He Would Be A Burden, And Have No Quality Of Life. He Says When He Can't Move Anything But His Eyes, He Does Not Want To Continue Living.

It Has Not Come To That So Far, So I Don't Know How This Will Play Out.

No One Knows When The End Will Come, Statistics Or Not.

Jackiemax
 

Geo

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Hello No body knows for sure ,Just Look at Professor Steven Hawking .Does he really have ALS ? Or Does he have a Variant of ALS ? Just look at the Different patients and the varying degrees of symptoms . Modern Medicine is'nt Modern at all . You can make Stats tell you whatever you want , Depends how you read them . Best thing to do is Educate yourself on what you have ,go to your doctor and start asking questions ,he cant answer ,you'll find hes not as educated as you thaught . All they know is Protocol . Geo
 

quadbliss

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Hi Jackiemax,

Chances are, your husband will need a trach/vent before he is completely paralyzed. I will admit quality of life is a very personal issue, but I am living proof that you can have a high quality of life even when vented.

I too thought I would be too much of a burden if I chose to vent, but my wife convinced me that our relationship could withstand this obstacle. She would rather do the caregiving if it meant I would be around longer.

It may be a good time for your husband to re-think his decision. I spent two years on 24/7 Bi-Pap. This gave me time to firm up my decision.

Mike
 
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