I don't want to know my prognosis

[Aloneinthis]

Hello all,

I discussed this quite early with my consultant and I do stand by my current decision but people are very irked and irritated when I advise them that I'm not interested in sharing or knowing my ongoing prognosis. We complete the ALSFRS-R with assistance from my consultant when my partner and I feel things have progressed but, even so, it is not as "regularly" as others not in my support system would like. I don't think these others understand 1. How individualized prognosis is dependent on progression or 2. That prognosis focuses on potential percentage of survival within a certain time-frame, not death at a certain threshold.

I understand people have anxieties, and wish to plan in advance for my death but, on a personal level, I spend the majority of my days planning what I'm going to contribute to my existence and my memories, how I'm adapting to progression ect. After writing my living will (which is something a lot of people do without a terminal diagnosis, I mainly focus on keeping the "future fomo" at bay by actually DOING THINGS because that is the thought that preoccupies me; that I will miss out on time with the people I love...the amount of time is irrelevant; just soaking up MORE of it.

But I so often get frustrated and annoyed and feel guilty for not coughing up a concrete "Oh! I have 4 weeks/ 6 months/ 2 years" even though it is impossible for even my consultant to be so specific.

Did anyone else choose to be "in the dark" about their individual prognosis? How do you manage when people ask how long you've got? On the flip side, anyone who regularly reviews their ALSFRS with their consultant, do you find it helps/hinders/has no impact on your daily mindset?

 

[Nikki J]

No one ever has asked me. Every tme I go they do the ALSFRS. It is part of their routine and I don’t pay a lot of attention. It is a very poor Indicator of progression in my opinion. You can have significant changes that aren’t reflected then a small change tips you over an edge and you drop several points quickly. You know how you are without it and I should hope your doctor does too.

We often say no one has an expiration stamp on the bottom of their foot so when someone is told x months it is a guess albeit an educated one.

I am not sure who these people are to you and what their motivation is for asking you. Can it possibly make a practical difference? And there are very few people who would have the slightest right to ask Everyone should be doing what you seem to. Living their best lives every day once they have made appropriate arrangements for the future.

 

[santimo]

I actually had the opposite experience, I would prefer to have a better picture of my timeline so I can make better plans related to work, money, travels and when I will need to move to a more accessible house. My doctors seems very against the idea of discussing it in those terms, even if I know it's not determined and very hard to guess. No one else has asked me about this except for my labor/job lawyer who is helping me with that stuff

 

[KimT]

I know how I feel so I refuse to do the ALSFRS anymore. I think I did it each quarter for the first couple of years then I just said I didn't want to keep doing it. I do check my breathing with home equipment. I know what the rest of me is doing.

ALS has plateaus, can speed up, slow down, so I'm not interested in a "professional opinion" on how long I'll last. I love my Mayo neurologist. He never pushes and we do most meetings remotely. I haven't been to a formal clinic in years.

 

[Sammy88]

I was diagnosed 2 years ago, had symptoms for 3 years. I haven't seen a neurologist since diagnosis. I don't want to know what stage I'm at or time left.

 

[Anne827]

I just went to 3 month check up and was so tired I thought of cancelling because I knew I was not at my best. I don’t like seeing my alsfrs number in my chart the next day but am compelled to look.
I told my neurologist that I am always apprehensive before my exam because with our diagnosis we never hear we are doing better. He said that he can suggest things to make life a little easier like assistive devices so I guess I will continue to go.