Calculating how long you’ve got left

[Aidan in Shrewsbury]

A morbid topic to be sure but it would be useful to me and to a lot of people to have some idea of when they will be likely to go.
from what I’ve read I understand that the average life expectancy of someone with MND is between 2 & 4 years from the the date of diagnosis, and that 80% of people will go within this period.
of course many will live quite a bit longer than this and others will go more quickly. I also know it is known as the 1000 day illness as this is the average life expectancy.
I appreciate that there are many different factors to be taken into account as the disease will progress differently in different people and if you have the type that affects breathing and swallowing it may lead to an earlier demise.
I wonder if there is any website where you could enter all your variables and that would tell you when you were likely to go. I appreciate that this isn’t the topic for everyone, but I would like to know how long I have left. Just a personal thing.

[Ellie]

I'm off on Saturday, 1st October 2022...

[shelly21]

Ellie i hope not. Have missed something?

Aidan in Shrewsbury there is the
ALSFR score. This is all I know re a way of marking progression
"Free Online ALSFRS-R Score Calculator - NeurologyToolKit" https://neurotoolkit.com/alsfrs-r/

[denise]

Nothing in life is certain. Death is certain. Just don't know when.

[Ellie]

Ellie i hope not. Have missed something?

Lol, no - it's quite impossible to calculate how long you've got left unless you are in, or near the end stage, or manage things personally.

I've known people with ALS who died as a result of cardiac arrest, a bad fall or simply unexpectedly, long before they ought to have succumbed to ALS, likewise I know people who have outlived their prognosis.

[AngieCanuck]

I suppose it also depends on how much medical intervention you choose…getting peg or not, using breathing assistance or not, etc. I completely agree with denise, everyone faces their mortality and cannot predict when their time in this world has ended. I think of the many number of ways people pass, COVID, choking, cancer, car accidents….? I know this might sound totally insane, but I feel like learning about my illness has helped me to surrender to the unknown and that brings a lot of peace.
I also feel fortunate that Canada has legalized medically assisted dying. Aidan in Shrewsbury how are you feeling?

[shelly21]

Ellie oh sarcasm lol.

Like me chocking yesterday. I asked my neuro on D day how quickly it will progress and he said that my 4 month wait to see him, it will be that noticeable every 4 months.

[Maria C]

Based on the progression last year, I was expecting to be non-ambulatory by Christmas 2021 and ready to check out soon thereafter. Surprisingly I was still able to get around the house as well as transfer right up to the beginning of May. Now I’m noticing weakness in both arms. I’ve had changes in my voice that others can hear.

Despite any plans I have made, that jerk in a large black SUV might very well have been my demise when he rolled into the crosswalk that I was using. 🤯

[Bowler]

Aidan in Shrewsbury I think if read your post back you will see you have answered the question of “ how long have I got”.

[JamesW]

According to my wife I could be dead at any moment if I don’t start behaving 😬

[Maria C]

JamesW I say that to my husband too. And he isn’t the one with MND. 🤣😂

[Banned]

Aidan in Shrewsbury. A good question that is important.

The doctors are pretty clueless unless they know the genetic cause. I was given months in 2012. Bank on survival.

A number of us perish due to poor care or falls. I also include being too difficult to care for.

(At last! Someone has improved the floating keyboard)

[denise]

Stephen used to say 'how long do you think I have?' I used to say "not as long as you think " 😈

[shelly21]

denise thats very true. The patient is always waiting for the next decline in function etc. We think the worse. I'm guilty of it.

Yet loved ones see it differently x

[Johnny5]

We all have one thing in common. Today. This is all we can control. We are all brave people. This monster we fight gives us a power that we never knew we had. To me, its useless to know WHEN I will go. I have no use for it, I am a optimist. I look for the good in life, pessimism is my enemy. I want to shine in darkness instead of hide in it. The other option is depressing. Living with hope is far better.