Would you want to know if you were going to get ALS or Alzheimer's or another incurable disease?

[Missy]

Following on the heels of another @Jambalaya (cancer) thread...what if the disease you were going to get was incurable? Would you want to know? There might be things you can do to mitigate the speed/progression but ultimately no cure at this time. Would you agree to be tested to find out or would you rather not know?

I am asking from a personal point of view because in my DH's family there is a strong Alzheimer's link. But he decided he doesn't want to know. I take the other point of view and I would want to know. I think. Instead we have him eat well and take good care of himself hoping to lessen the risk if that is possible. So in a way we already act as if yes, he probably will get this disease (g-d forbid).


What do you think?
Would you want to know?
Or would it just cause undue stress since there really isn't much you can do about certain diseases.

 

[qubitasaurus]

No it's somewhat different from cancer as even early detection won't save you ultimately. If I'm ultimately going to lose quality of a significant fraction of my life, I'd rather not taint the rest of my life with the stress of foreknowledge.

 

[Missy]

No it's somewhat different from cancer as even early detection won't save you ultimately. If I'm ultimately going to lose quality of a significant fraction of my life, I'd rather not taint the rest of my life with the stress of foreknowledge.

Yes, that is how my DH feels as well. I vary from feeling like no I want to know to no I do not want to know. I agree it would probably taint the rest of our lives knowing something like this. I am torn. I guess another question could be would you want to know how long you will live and that is a question I cannot really answer either. On one hand it would be good to know so we can make the most of our time here but on the other hand it could ruin the rest of our time here. Instead it is wise to always live in the moment and make the most of our lives since nothing is promised to us but right now. Thanks for sharing your thoughts @qubitasaurus.

 

[icy_jade]

Yes. I will want to know and actively manage as best as I can.

If nothing else, I can make sure that I settle various matters - financial, personal, health/end of life care, funeral arrangements, etc before things/I deteriorate. Maybe I’ll decide that I will quit my job now when my facilities are sound and I can check some things off my bucket list instead of waiting.

 

[marymm]

I didn't answer the poll.

FWIW my understanding is that most of these genetic tests reveal only a potential likelihood/risk of developing a specific disease ... just because you have a gene marker doesn't mean you actually will get the disease ... and conversely, even if your genetic test is negative for disease-specific markers, you may still contract the disease ...

Deterministic genes are more rare and I believe for Alzheimer's it relates to early-onset (age 30 to 60) Alzheimer's ... even there, you can get early-onset Alzheimer's without those specific deterministic genes.

Most people who seek out these genetic tests have a family history of a certain disease so already are on notice of their potential risk and can take whatever steps they want to reduce risk and/or improve quality of life.

There are so many dementia diseases, and to my understanding most of them can only be definitively diagnosed after death by autopsy.

 

[MissGotRocks]

In life we all have to accept that much of it is out of our control. For a disease that has no cure, knowing ahead of time for me would be like living with a sword over my head. I have known several people that have succumbed to illness encountered too early that was deadly. They were all people that you would have never guessed would have received that diagnosis. I honestly don’t think any of them would have wanted to know about it five years prior. I think we are all charged with trying to live our best lives without focus on fear of the unknown - otherwise we are not living but rather waiting for the death knell.

 

[Mreader]

@missy I have the same disease in my family as Greg has and I would definitely not want to know. It’s already a huge source of anxiety for me (my dad and grandma had it and now one of my dad’s sisters does) so if I showed markers it would send me over the edge. As Mary said there isn’t a definitive test and even if there were I’m not sure I could handle knowing since there’s no cure. I remember seeing a 60 minutes episode where there was a family (in South America I believe) studied where half of the members would get it and with their situation they had a certain gene where they could be tested. Because it was a study they were all tested but none of them knew who had the gene as it was a blind study. Such a terrifying situation and that story still haunts me.

ETA - another 60 minutes episode (I like 60 minutes lol) has a study with people who are over 100 years old. And some of them have already passed away and their brains were studied once they passed. Some of those people had dementia and they had those markers in their brains but others also had those markers yet never showed signs of dementia.

 

[Daisys and Diamonds]

I'm with Greg
My mum and grandma had it
i dont want to know
dad's side has cancer
Im kind of screwed

 

[TooPatient]

I have a different perspective as I have already been diagnosed with an incurable disease. Prior to this, I would have said no. The idea of a disease that I have little/no control over getting or impacting the progression, I would just want to live. Now that I have this diagnosis, I would like to know if I had another one hiding somewhere that would make a decline more likely or sooner. I would also like to know so that I could know that I didn't have another lurking and am likely to be (comparatively) predictable in decline. (Remembering that MS is very unpredictable so I do live with the reality that I could be in a wheelchair, blind, bed ridden, or whatever at any time or I may be unchanged in 30 years. No one knows.) I would add that I have had this conversation with people (before my diagnosis and with people who didn't know about it) and a number of them have said they would rather die than live with X. Great. So if you knew you would get X, do you kill yourself? I have had some people say they would. If you had asked me before my diagnosis, I would have said the same thing. Getting the diagnosis is, in some ways, the hardest kick in the stomach you can get but then forces you to keep waking up. You learn about it and how it is for you and keep moving forward. It isn't easy, but it isn't the immediate death sentence that it can feel like when talked about in abstract.

Another aspect that I am thinking right now is knowing a likely quality of life can help you as you prioritize and pace your life. A friend just lost her father. He wasn't even 60 years old. He and his wife worked hard, focused on building savings, so they could retire early and enjoy traveling together. He died just months after moving to the home they retired to. Rather than decades to enjoy their family and retirement, they had months. His wife is now looking back wondering if they prioritized right. (They did have a great life together with lots of traveling, shared hobbies, etc so definitely not all work with no play.)