question on attitude

[nebrhahe53]

I keep being told that a good attitude increases survivability time, but I just dont see that from the forums. The survival time is a few years on average, whatever your attitude. Am I missing something?

 

[affected]

My take Neil (and I probably shouldn't post anything today) is that attitude will totally affect your quality of life.

With FTD causing constant anger and paranoia towards me, there was very little quality of life here. He couldn't help this and I hold nothing against my memory of the man he was.

But if you keep the best attitude you can, encourage your wife to do the same, then your time, however long it is will be far better. And your wife will have that to hold on to and cherish.

Certainly there are parts of attitude that will shorten things - the I can walk attitude causing serious falls, the I can eat attitude causing pneumonia etc All these certainly will shorten a PALS life.

hugs

 

[Nikki J]

I don't believe that attitude affects quantity of life just quality. Except if your attitude causes you to make decisions that are either smart or stupid. If you take risks and fall for example as Tillie says
I am pretty bitter about people who say attitude helps. It is blame the victim in disguise.

And I do believe attitude matters in other illnesses sometimes but not ALS

 

[Nikki J]

Oh I have to add there are occasionally people who are from FALS families who do not even know if they carry the family gene ( 50/50 proposition) who credit their attitude, diet,lifestyle for their not having ALS and that really annoys me!

 

[lgelb]

Who keeps telling you that? Just curious. More importantly, what is a "good attitude?" Acting as if all is well? Looking for silver linings? Balderdash, I say. If you're a pessimist, or even a realist, acting as if is only going to depress you more. Everyone adjusts/adapts differently to a paralyzing demise. Likely, survival comes down to staying with the 'tude that got you to the age of ALS, if you think about it.

We had some good things, like reconnecting with a few people, come out of Larry's journey to death but there was never any point in holding those up as worth it all. I wouldn't today, either. He certainly wouldn't. Yet some of the letters I received from his student caregivers after his death talk quite a bit about how he refused to let illness get him down. It's all in the perception, you see.

 

[tripete]

As I am still grasping with how this can all be happening and I am not sure how one holds a good personal attitude. I think Nikki is correct when she says "I don't believe that attitude affects quantity of life just quality".

I believe that my life has never been about me but about serving those I love (because I believe this, it does not mean that I have succeeded at it). So the attitude for me will be to try and serve my wife and children with how many ever days I have left, this was the same before this horrible onslaught, and must be the same now. I want desperately for them to have good thoughts and memories of me even after ALS finally claims me. In the end my attitude must be to love them in service and not myself.

 

[Janbrit]

its really difficult, I try to have a positive attitude but after talking long and hard with my MND nurse realise that I am staying positive for those around me, and to please them so that they do not have to face the realities of the situation. So pretty much like you Tripete I am doing this for those I am going to leave behind and trying to maintain the best quality I can

 

[azgirl]

So here's my take on attitude.

ALS is in my body and launching a takeover, slowly, cruelly, everyday. I don't believe there is a whole lot to do to improve the maximum longevity, baring major miracle. However, everything I do that is positive can only improve my chances of sticking around to hit that maximum. Without these, I am certain my quality of life, and that of every person around me would suffer greatly. And I'm pretty sure that bad attitude, not caring, not trying would guarantee hitting the minimum. Some days are bad, really bad, and I want to give up. But then I look around at all those I love so much and find the strength to push on.

Right now, I'm pulling for the maximum, for me and all my friends here.

And a major miracle

 

[lgelb]

With respect to those of you who retain the insight to want to leave good memories, I'll suggest that you live and die as just who you are, the same person that was and is loved. Some of my most cherished memories are of my sarcastic, cynical, critical love. That's not the same as giving up (he didn't) or not trying (ditto).

If you have days when you _want_ to give up, who doesn't? And these can lead to the conversations that inform care for you when you are less fluent. Share the good, bad and ugly with those you care about -- they want to connect to the "real you" as much as ever. As in any relationship, of course, you keep some things unsaid. but IMHO, ALS is not a reason to be more reticent than you usually would.

 

[affected]

The OP was asking if attitude increases survivability time ...

I think that 'good attitude' is important. What constitutes 'good attitude' may rightly differ for individuals

 

[lgelb]

Tillie, I had responded earlier to the survival question Neil started with. Just now I was responding to the "do for others" notion.

If a PALS at baseline is happy and positive, s/he will likely remain so. But for those who were not, or cannot now remain, I would not ask you to change who you are when ALS has changed the rest. That kind of leaves the flexing to the CALS. I think we should be up front about this for the new CALS in particular.

 

[nebrhahe53]

I just had a visit with my brother, who is 16 years older than me, and who will outlive me (not that I would ever want anything to happen to him of course). Sometimes I cant help feeling cheated by the 20 years or more I will lose to this horrible disease.
The visit was very nice, although he has to fly to see me-I cant walk a block now, much less travel. He told me that the best thing I can do now is give a gift to my wife by not making it too hard on her with a bad attitude.
What I struggle with is who do I talk to when I feel I cant breathe, or like tonight I lose another part of myself.
Our dog (10 lbs) is used to me lifting him up on our bed. Well tonight, I told my arm to lift him, and nothing happened. Another muscle group gone forever.
It is so hard to stay positive as this loss of function continues...yet for my family I must.

 

[affected]

Neil this is all so difficult to get across clearly in text.

I believe talking openly with your wife about how much the disease affects you emotionally and how you feel about each progression is a GOOD ATTITUDE! This is maintaining your relationship. In return you wife could then express how she feels. You may cry together, but then surely you are both more able to face it all together.

I think this is something that confuses me. If people say I am trying to keep a good attitude for my family they may be missing the point.

Is it a good attitude to hold everything in and pretend? Don't believe your family will be totally fooled!

 

[tripete]

Neil I am struggling with exactly what you expressed. And Tillie while ideally I agree with you, it is very difficult to watch the pain and tears on your wife's face as she says that she does not know how much more she can take. ALS is not only killing me but is placing a dagger in my wife and kids heart. I am their father and husband I will be string for them. It does me or them no good to sit around feeling sorry for myself. I keep telling her that we are going to enjoy the rest of our days together whether it be 2 years or 20.

This is a VERY difficult reality to deal with and stay positive, we need to hold on to what ever we can.

 

[affected]

thanks for sharing how you feel tripete.

I think there is a world of difference between sharing how you feel with your wife and sitting around feeling sorry for yourself...

I also know the dagger in the heart, it went right through mine.

We are all different however, and it's the great thing about having so many opinions and views being given here.