is it better not to know?

[rocmg]

dear all... i was having a conversation with my friend tonight. i described how i felt mum seemed to have gotten worse since her diagnosis. my friend then raised the question about whether or not it is beneficial to know so much about the disease that will eventually kill you? i know a lot of people prefer not to know the next stage until absolutely necessary, but do you think ignorance is bliss, in a sense? it got me thinking about all the people in the past who had ALS, before it was given a name-tag. do you think they were better or worse off?

 

[rose]

I get your point, but, the person experiencing the symptoms also needs to have a cause assigned to it, it can be maddening not understanding why your body is not cooperating.

Add to that the fact that so many people ask what's wrong with you..... (not that I tell perfect strangers) I think knowing and naming the monster under your bed, and knowing you can fight it, is better than just laying there being scared.

Someone who contracts lung cancer knows that their chances of survival are slim, but they still need to know.

Its hard, there is no denying it, but, also, no one gets out of here alive anyway. So I think the only way to keep quality of life at its possible best, is for the person who has bulbar als to understand what is needed (by their cooperation) to realize this.

 

[lovelovelove]

i prefer not to tell my mum.When i read about the ALS,i also feel scared for my mum, so i think i better not to tell her. I tell her it is a not-easy-treated disease.but at least she feel there is some hope to get better.
if you tell her that there is no treatment, and also tell her wat will happen to her later, she will need a long time to accept.maybe she will decide to give it up ,and not to go on living anymore.
Bij the way, my mum donot how to use internet.
you cannot hide the truth if somebody can check it himself on internet.that means sooner or later, he will know it.then you will lose all the trust from him.
so my idea, not to tell the patient. i think it is better!

 

[danjay]

What a minefield to have to walk through. Even "knowing" it is ALS leaves so much uncertainty about progression and cause and possible treatment, so many choices that need to be made on uncertain information. I would never claim to speak for others, especially as in your case where you know your Mom and what she can handle. As I am the PALS and not the CALS, I want all the details, I want worst case scenarios, I want to know as much about the enemy as I can. You may choose to not let your Mom know, but then you have to take responsibility for your choice and be doubly strong in caring for her and knowing what is happening. I wish you the very very best on this difficult road.
Dan

 

[hopingforcure]

It is ironic that you mention that, Lou G. was said to have never really known his ultimate end.. He thought that vitamin's would give him a fifty percent chance.. I believe the only people in his circle who really were aware were his wife, manager, and doctor, and friend.. That is such a tough and thoughtful question.. I am so torn.. Wow thoughts go loose in my mind.. I cant imagine not knowing any other pals or cals, that is to me the greatest gift.. Being a Cals with this situation must be such a challenge, bless you..