Life expectancy

[soonerwife]

I am curious about something.

When they say life expectancy is 2-5 years. Is this from first symptoms or diagnosis?

I was thinking it was from diagnosis but that doesn't really make sense to me since some take longer to be diagnosed than others?

 

[Atsugi]

Age old question. Also doesn't matter in the individual case. The official answer is "from diagnosis."

Each time we saw a doctor, they would tell us the same thing; the official stats, 2-5 years. So, at the end of the appointment, I would let my PALS out the door, forget something, then go back to see the doctor up close and personal and say, "I need to plan for my family. I am going to build a house for my wife. How long does she have?"

Each time, the doctor would shake his head at my plan to build a house, and would say quietly: "Not even a year." They were right. She died 9 months after diagnosis. Ten months after first symptom, falling over.

Each day--even today now that I'm alone--I would wake up, assess the current situation, and say, OK, let's make the best of it.

Some live 30. You just can't tell. Prepare for the worst, hope for the best, live for today.

 

[Lkaibel]

Dr said he would guess Brian had another year on his feet and if he saw it to the end - which he has said consistently he will not do- a total of about three years, maybe four. He said he has been wrong. He has one patient still walking 4 years after Dx. He had another who died in six months.

We just deal with what comes.

 

[Nikki J]

I remember one of the doctors I saw for research telling me he had patients who still could walk a little after ten years. You may find like Lenore that the doctor will give a more individualized estimate especially after a couple of visits. My neuro did, unsolicited, after 6 months but ultimately they can only give an educated guess ( so far my neuro has been pretty accurate)

 

[timag49]

We were probably all given the 2-5 year number when diagnosed. That was 4 years ago for me. 10% live over 10 years. What we have had to adjust to is the moving ball? Atsugi lost his loved one in 9 months and we've lost friends in 18 months. We have learned to do those things that are imperative if the outcome is short. But be prepared to adapt. Horizons change-sometimes this is painful as we have to revisit life and family challenges. You will navigate this your own way.Talk with your loved ones and share both your needs and your fears. BTW-Life is still good

 

[affected]

It's just numbers and is an average.

It means nothing to the individual I'm afraid.

And there are so many variables - taking in enough calories, over-exercising, falls, DVT and aspiration pneumonias, and then any other health issue that may develop independently of the ALS can all play a huge part in changing the game for the individual.

What we have is the now, what is to come is unknown. That's why a day at a time is the best approach. Whatever you have today, celebrate, who knows what tomorrow will bring.

I also wanted to know. It was obvious Chris was rapid progression, gone 11 months after diagnosis. But at the day of diagnosis we had no clue to that and I figured we had at least a couple of years. We had many of those variables above that may have influenced how long he lived.

 

[scaredwifetx]

Soonerwife, I get wanting to know. We watch the decline and see so many variables on here. We have been on this journey for a year and sometimes I think Steve is doing great considering and other times not so. He lost weight at last clinic, his breathing is down, he is having issues with eating. The Doctor has never said anything to us about a timeframe and always just says to him that he is doing good.

I try not to think about what time he has left and enjoy the time he does. He has given up on all activities and just stays in the house and doesn't talk. I try talking to him but there are definitely no conversations. Life for us is in limbo and so many things can change as witnessed on this forum.

We just have to live each day by not counting each day and love them.

 

[azgirl]

After my EMG I had a doctor tell me one, maybe two years. Now I'm approaching 3 years and going pretty strong. There are too many variables for them to accurately predict. Also, there are things you can do to maximize your time to some extent.

 

[JennyC]

Who the heck knows. My mom started with vague symptoms in late November 15, was diagnosed in late April 16 and now can only walk with a rollater although she still falls, can't dress herself or full bathe herself and is having speech issues already. So 2-5 years means nothing really.

 

[gooseberry]

I would say the docs have a general idea only. Steves said 18 months when he saw the als specialist. He had 19. Had he used his chair he probably wouldnt have fallen. The docs instead talked about how he was respiratory onset, greater than 10% decline in pfts every 6 weeks, etc. Those were the factors that determined prognosis.

 

[Diane H]

The life expectancy prediction of 2 to 4 or 5 years really isn't especially accurate without stressing that is the average, not the range. As mentioned some of us take years before the doctors see enough progression to make the diagnosis. And many people don't seea doctor for year or more after the first symptoms begin. On the other end, I am still not seeing any statistics that include those who choose to use BiPAP. Seems we are, for statistical purposes, written off as dead at the time we require breathing assistance. At least they could be more honest than giving the 2 to 4 or 5 year pronouncement. Honesty would require saying that the range is wide and time to see how fast you are progressing is absolutely necessary before they can make a guess. And that using BiPAP and getting a feeding tube are options that can not only extend life but improve the quality of life.

 

[gooseberry]

Diane, Steves pulmo at the VA is involved in a study about bipap and prognosis/survival. He felt, from the data he was collecting, that bipap slowed progression/stabilized many patients.

 

[soonerwife]

I actually wasn't trying to figure out how long my PALS has. That's actually a little too scary for me to think about.

I am more just curious because it doesn't make sense to me to say from diagnosis... Makes more sense to say from first symptoms to me. I thought maybe I misunderstood their logic.

Thanks for all the responses though. It gave me some good information.

 

[affected]

I think it is because 'diagnosis' is a definite kind of date.

For example we can pin when Chris began to have bulbar symptoms, so he lived about 20 months from then.

However, 2 years before that a physio discovered muscle wastage in his back at the shoulders. Was that a first symptom? How long had the muscles been wasting before it happened to be found? In that case we can't say how long he 'lived' with ALS actively in his body because we can't really pin when it started.

Another PALS could say they had fasciculations for 10 years before ALS started, but there would be no way to say if that twitching had any connection to the ALS or not if it wasn't being monitored.

 

[soonerwife]

That makes sense. Thanks Tillie!