Longevity after ALS diagnosed .... age dependant ?

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Marco Polo

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I'm new to this but it seems from what I've gathered so far that the folks that survive more than 5 years tend to be folks that got ALS relatively early in life. True ? Any examples out there of someone diagnosed in their 50's or later that lived more than 5 years ?

I'm guessing there tend to be more folks in their 20's or 30's where the disease progression is slow, but by the time you get into your 50's and beyond the progression is typically more rapid. But I'm just guessing, so hoping for more clarification from you guys. Thanks.
 
Nope, it's not age dependent. It's random.
 
Hello. There have been numerous studies looking at prognosis of survival. Here is an abstract from one such study:

Amyotrophic lateral sclerosis is a progressive neurological disease of unknown etiology and fatal outcome. Patient management can be aided by careful assessment of prognostic factors. A prospective study of 158 patients was carried out to examine the prognostic significance of age and clinical form at onset. The overall 5-year survival rate was 14.7%. The higher the age was at first symptoms, the worse the prognosis. The bulbar and common forms had a worse prognosis than the pseudo-polyneuritic forms. After adjustment for age, the clinical form at onset remained a prognostic factor. In a multivariate analysis using the Cox model, these two factors remained independent despite the later onset of the bulbar forms. In view of the discrepancies between the different published studies, the evaluation of the survival of an individual patient is of doubtful value.

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However, following real life stories I have come across people in their 20s and their 30s who did not survive for more than 18 months as well as those in their 60s and their 70s who have survived over 5 years.
Statistical analysis is helpful in gaining an overall picture, but does not tell much about individual cases.

D
 
My mother was diagnosed in Feb 08. Her first outward sign was a dropfoot that began in late May 07. As of today, she is bedridden, has a catherer, has a peg, is on neurontin, oxycotin, and morphine for pain. The only things that still work are her neck and right arm. She passes her time by watching tv, running us around rearranging items within her view, and sleeping (or crying). I look at her and think why doesn't the Lord take you away from this. The answer is he is not ready and there must still be lessons for us to learn. As for longevity, unless one is going to have an extremely slow progression, why on this earth would one choose to remain in this shape? She has lived a good life. We will be there until the end. And when the Lord takes her, I will be thankful she isn't suffering from this horrible disease anymore. I never thought I would ever be ready to give her up but, this disease has sure helped me get rid of the selfishness of keeping her here at all cost. I love her dearly and hate to see her like this. My mother never took any medicine, not even an asprin in most cases. Now, she is on enough narcotics to choke a horse. Nope....this is no way to live. Her prognosis was 1 to 3 years. It has now been 2 years since the monster appeared. I hope she doesn't have to lay and suffer for another year just to make it to 3. Live your life while you can. Don't put anything off unless you absolutely have to. The time will come when you can't do anything at all but exist. That is where she is now.
 
I was diagnosed in Oct. 03. at 54. Turn 60 next week. Still fighting.

AL.
 
Marco ... why are you interested in this statistic? Do you or someone you care for have symptoms of ALS? Nevermind ... just found the answer on another thread,
 
BethU posted this a couple of weeks back:

The May issue of MDA/ALS Newsmagazine has an article on "Factors in Survival." This is a quick synopsis ... (I wonder if they separated out bulbar onset from limb onset [see below] that might give a very different survival prognosis for limb onset PALS.)

Age ... the younger at diagnosed (under 45), the longer you live. Older than 65, shorter survival.

Diagnosis Delay ... The longer it takes to diagnosed you, the longer your survival will be !

FTD ... If you have dementia, too, your survival will be shorter.

Gender ... Males survive longer.

Genetics ... Some familial forms of ALS are more aggressive than others.

Genetic/Epigenetic Modifiers ... "some factors that cause genes to behave differently without actually changing the DNA may positively or negatively affect length of survival." (Huh?)

Rate of Progression... A slow rate of decline after onset tends to correlate with longer survival.

Type Onset ... Limb onset has better prognosis, bulbar onset has shorter survival.



*** I don't think this it is completely etched in stone, but I mean, are they lying? Probably not.
 
Tim

My brother Tim was Dx at age 42. He will be 48 in July. He is Trached and Vented. He can still talk and eat.

Sherry you forgot to mention in the MDA/ALS Magazine. There was a study done about people with ALS that had good ATTITUDES, lived longer.


Lorie
 
Sherry you forgot to mention in the MDA/ALS Magazine. There was a study done about people with ALS that had good ATTITUDES, lived longer.


Lorie

sorry about your brother.
and I was just re-posting what BethU had posted. haven't read the actual article. but yes I believe that a positive attitude will go a long way.
 
My brother has been diagnoised with ALS (last year) plus front lobe dementia. Already he cannot use his arms hardly at all and doesn't talk very well, I feel so bad for him - what a horrible disease!
 
My brother is 68 and as far as I know, there was no one in our family that had this disease. I do believe, however, that our Grandmother suffered with front lobe dementia before she died.
 
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