Wish everybody would read this

[bigmark1954]

The most profound reaction I have had is people that just hug me and be silent. It only happens with friends or long term acquaintances. The most difficult thing I have had happen is when I went into my cardiologist............at the end of the exam, he stood up and gave me a firm hug and said "I love you, and just for the record I always thought you talked funny". This was about a month after my diagnosis, before I started taking Neudexta......it just broke me down, to the point that he just left me in the exam room with a box of Kleenex.
I still have a lot of emotional lability, but fortunately it is mostly when I am alone with Harlee.

 

[mcwtlg]

Three that I cant stand:

-"Don't give up keep fighting"
- "You don't know maybe they will find a cure"
- ""Who knows you could get hit by a car and die, nobody knows and everybody dies, or other people you know may die before you from a heart attack..."

I said it before, it seems we spend most of our time comforting others when we are the ones wasting away - on the fast track

I have only heard the first two in my case, but you are spot on.

 

[mcwtlg]

The best response I have heard yet was from a former colleague who now works at a start up. He, I and another (unemployed) former colleague had lunch the other day and when I told him he just looked at me and his jaw visibly dropped then he said, "I do not know what to say to that". I told him not to say anything. Just be available if I need a favor

 

[Barbie]

How about when they compare their uncle's cancer to your husband's ALS--like it is a contest to out do you in suffering. Even worse if they compare it to something trivial, like irritable bowel syndrome. like I give a flip--

 

[tripete]

Barbie, for my wife no ones problems natter anymore. She is tired (as am I ) about people wining about everything when they have no idea what hurt and pain are.

 

[skipper66]

Oh come on now Barbie. SH------- one's pants isn't fun either. lol

 

[Nuts]

My least favorites:
--It'll all work out.
--I'm sure he'll be ok.
--You are so strong.
I know that HERE I don't have to explain why.

 

[4tloml]

I still have a lot of emotional lability, but fortunately it is mostly when I am alone with Harlee.

Our dogs just get it, don't they?! Our girl will not leave her "dad's" side now.

That was great--thanks for sharing it, Mark. I'm feeling some guilt on a few of those, so consider me schooled.

 

[veggiepete]

One I've heard a couple of times is " you're so brave".....as Max says iswis.....given the choice I would've ran away is quick as quick as my chicken legs would of carried me...

 

[Grumpy'sWife]

Some of my least favorites are from the medical professionals who come into our lives for just a moment and say things like I hope he gets well soon. We actually had an RT say to us "I heard a cure is just around the corner so I am sure you will be just fine" Grumpy's response was "Want to tell me which corner, I will roll myself that way". I couldn't help it I broke out into laughter.
The best response we got was from an old friend who heard that Randy was sick but didn't know he had ALS, he arrived unannounced in the middle of tube feeding. I just let him in and kept doing what I was doing. After explaining ALS and when we were diagnosed he looked at Grumpy and said "no words buddy except I love you."

 

[Green Queen]

Grumpyswife I love it. Sometimes people need a response that makes them realise what jibberish they talk.
I also love grumpys mate's response. Sometimes we really need to hear things like that.
I've asked my friends not to desert me...I know they won't, but it's always in the back of my mind that when the going gets tough.....

 

[tripete]

The best way to shut them all is the simple statement "I am dying".

 

[BlueandGold]

I'll probably get slammed for this and that's o.k. I know I am early in my diagnosis and haven't lost as much function as many of you but I do realize our fate. I understand that every day brings another slap in the face from the moment we wake up until we go to bed. It is what it is to quote Max. However, we are not the only one's going through this. It may not seem like it but we all have a choice with this disease. Not with the progression or what it does to our bodies but with our attitude and how we deal with it. It may seem impossible but there are good things in our lives each and every day if we look for them. If we can put ourselves in the shoes of our CALS and imagine how we would feel if it were them diagnosed with this disease. Imagine how you would feel to see your wife, husband, brother, sister, mother, father wake each day drowning in depression unable to find anything positive around them. Then, imagine how much it would mean to you to see them smile and find something, no matter how small, that brings them joy.

I'm not saying to put on a facade. But if you try you will find things that can bring you joy even in this state. I cherish every day with my wife and I encourage her every day to live in the present and not the future. Sure it is a struggle, but our struggle will end one day and they will live on. I don't want my wife's memories of me to be overshadowed by how this disease took EVERYTHING from me. I won't let it. My wife, my kids, my mother and father and all my sisters and brothers and friends bring a smile to my face when I see them and think about them. Our CALS need to see us smile. It will help them more than you know.

 

[cheerleader]

Blue and Gold, thank you for your beautiful thoughts. A positive attitude does help everybody- even if you have to fake it some days! No one expects either the pals or CALS to be cheerful all the time. We all have good cause for grief. But finding joy in each day makes a difference. As a surviving spouse, the hardest part of this horrible disease was staying positive and cheerful so our lives could be as calm and as full of love as possible. It takes a lot of energy to be the "cheerleader"- but needed to do that for my hubby, as my despair would bring him down and cause more worry for him.
Without a doubt, your upbeat attitude is a gift to your family. But it is okay to share with them your frustration and concerns as well. That's what people who love each other do. Thanks for making me smile today (and cry, too!)

 

[affected]

B&G you will find lots of threads here saying similar things and I am totally with you on that point! Maybe start another thread? It's kind of a completely different topic to what this thread is about which is more concentrating on stupid things random people say to us.

Pete, I forget now who it was, but someone here once said they reply - I'm doing great thanks, except for the dying bit. (or something like that it was a while back) I always wished they had said it here in time for me to use that line when people would ask me stupid things :lol: