Would you want to know?

[slopokahontas]

My Dr was telling me about a group of Mathematicians and computers geeks that have used algorithm to tell patients of ALS how they will progress and at what rate. Would you want to know?

 

[affected]

We think we want to know, but I doubt we truly do.

And it's all bs, no algorithm can tell as there are SO many variables.

 

[GregK]

Lies, damn lies and Statistics.

 

[gooseberry]

When my hubby was initially diagnosed, I asked what to expect and he left the room. He definitely wouldn't want to know. I wanted some idea because when life gets hard, it reminds you that it is also finite. So when i don't want to go out or drive 50 miles, I think, I may not get that chance again so I do it. I am not waiting for things to end but rather use the timeframe they gave me to remember how precious every moment is with my husband.

 

[Nikki J]

I don't believe it could be very accurate. To some degree one can guess. The old saying is start fast finish fast. But we all know people who have plateaued or suddenly accelerated. And if it really worked yes I want to know so I can plan!

 

[nebrhahe53]

I would want to know how many years after I die they would have a treatment for this hell-otherwise they can take their algorithms and do you know what with them.

 

[frankb]

Sure, I would like to know. However, don't think there is anyone out there who can provide us that info.

 

[4tloml]

Here's a short description of who developed the algorithm and how/why:

http://news.sciencemag.org/brain-be...redicts-progression-neurodegenerative-disease

It pretty much wrapped up like this:

"The improvement in accuracy could prove very powerful in a large clinical trial, he says, but it’s not reliable enough to provide a prognosis for a single patient."​

My PALS wouldn't want to know, and so I wouldn't either--I could never keep a secret. (Would be nice to know how long he'll be able to manage the stairs, though, so we know whether to move or remodel.)

 

[tripete]

If they could tell me what to expect and how long, absolutely. One of the most frustrating things has been that they have not told me squat; "OK Peter you have ALS, here's a disability letter, come back and see us in three months... And oh yeah would you like to donate some blood for our future testing" #*<*\$&:* doctors.

This is the only place I have been able to try and understand what is happening to me.

 

[lgelb]

I am familiar with the published algorithms/disease models. They explain some of the variability at a population level but the study populations appear more homogeneous than inclusive. This is not uncommon in disease modeling. Most of this work is being done to inform clinical trial sample stratification and design, not patients.

Those of you that do "want to know" should know that some of the peer-reviewed literature recommends waiting for the patient to ask before providing patient-specific info (that is more likely based on experience than algorithms), and some authors recommend waiting for a return visit after the patient has asked the first time, after asking the patient if s/he is sure s/he wants the information. So whatever you want to know, it pays to ask, as always.

 

[davbo49]

i don't see it. not in this time

 

[patrick123]

My favorite statistic.
3 out 4 people represent 75% of the human population

 

[canmark]

I think it would be useful to know, although if you monitor your own progression you may be able to project just as well as any statistician.

For example, at one point I was considering getting a stair lift as it was becoming so difficult for me to walk up the stairs in the house. My occupational therapist did warn me, though, that you still need to transfer to and from the stair lift, and that in a weakened condition this may be difficult. In the end I just moved down to the main floor. Had we got the stair lift, it would’ve cost us over $10,000 (we have a curved staircase) and probably would have only been useful for only a few months. But had I been a slow progressor, the stair lift may have been useful for a few years.

Also, I am not personally interested in being “technically” alive. I don’t want to be trapped in a body that cannot move. I’m not interested in going on a trache, and even a feeding tube is unappealing (presently, although I am too weak to walk or even stand, I am able to eat normally, speak and breathe without a BiPAP). I know this is not everyone’s decision, but I am unmarried and have no children, and have no desire to prolong my death. My parents are my primary caregivers and they are seniors, and I don’t want to take away too many of their golden years. So, I would like to know the point at which I would lose my ability to move as I could then plan backwards from that. As it is, I’m hoping the end comes sooner rather than later. Funeral arrangements have been made and I’m now finalizing my will. I want to be ready. (My aunt died of ALS, somewhat unexpectedly, only four months after diagnosis. So I know that it can happen at any time regardless of your condition.)

 

[travelbugg]

As has already been mentioned, the algorithm would only be useful for selecting patients for studies so that they don't spend lots of time and resources on patients who then can't complete the study. I can only imagine that the "scientists" spending time on this are the same ones that prefer reading actuarial tables to talking to real people.

Our ALS specialist is a gem, and when we asked for a prognosis, he refused to speculate. He said that it would be nothing but a guess. He did say that when the breathing gets below a certain level, body mass has reached a certain level, and with a few other indicators, that this usually indicates that the person is within 6 months or so of passing. If we want to know then so we can plan for the end, he'll tell us what he sees, but other than that, he said he'd be guessing.

I told him that one neurologist had said in January of 2014 that my husband had only months to live, and our specialist replied that he hated hearing that doctors said such things. He told us about one patient who had been told by his community physician that he wouldn't make it to Christmas, but he's still alive 6 years later. The patient sends this doctor a card every Christmas that reads, "I'm still here, A*****E."

My husband has had FTD since 2001, and his respiratory-onset ALS began in early 2011. By any estimate, the FTD/ALS combination is supposed to produce a fast exit, and lung-onset is the very worst, so he got a double-whammy. Every single guesstimate would have put him in the past tense by now, but he walked up the stairs to bed just a while ago. So, these scientists will be wrong, because they may think they are, but they're NOT God, and only He decides when it's time. Scientists tend to underestimate the human will to live.

 

[GregK]

Well said T-bug!