Unread 04-04-2008, 10:19 AM #1 (permalink)
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Default What do you say when...

. . . someone asks what is going on, you tell them... and they say "I'm sorry".

I have not been able to come up with an adequate response to this. It seems that no matter what I say it always comes out sounding either very cheesy or just superficial.

Any suggestions?
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Unread 04-04-2008, 10:51 AM #2 (permalink)
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that is a hard one,i try to avoid any questions from people as i fully dont understand the answers.
but if people ask how i am i just say "i'm plodding along" or "i'm still going".
it is a bit awkward when people ask and the way they react , to say there sorry is the usual responce and im sure we would react in the same way,it is something you try to deal with.
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Unread 04-04-2008, 11:35 AM #3 (permalink)
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I usually say I'm hanging in there.
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Unread 04-04-2008, 12:06 PM #4 (permalink)
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Prometheus -

Are you referring to the first question? - from someone who hasn't seen you since diagnosis?

I too have problems with this quesion. If I know them well I tell them either the short or long version and then comes the audible grasp and then the I'm sorry. I'm sure I would do the same. If I don't know the person well I say I have a neurological disorder and let it go at that.

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Unread 04-04-2008, 12:51 PM #5 (permalink)
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Thanks olly & crystalkk...

sharonca, yes... it is usually the first time I've seen them since things started going wacky with the legs. I do the same thing. I start with the basics ("I have a neurological disorder") and if they ask more questions then I tell them more. Once you start though, it almost always turns into a long story. I should just memorize the spiel. If I don't know the person i also keep it simple.
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Unread 04-05-2008, 04:08 PM #6 (permalink)
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Of coarse everyone is different, but I would be tempted to say something like: "We are all given unique challenges in life. This just happens to be mine."

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Unread 04-05-2008, 05:26 PM #7 (permalink)
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Most people don't know what to say to someone who has been diagnosed with ALS (or any other disease for that matter) They mean well in their response, but sometimes it is uncomfortable for everyone. I would just say, thank you for caring.
Most people are sincere, when they say they are sorry, they truly are sorry for what you are going through.

my thoughts anyhow.

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Unread 04-07-2008, 01:29 AM #8 (permalink)
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I agree that most, if not all people mean well. I can hardly blame them. I would probably say the same thing. I certainly don't feel offended when they say they're sorry. I have just always struggled with what to say in response to that and you have all given me some good suggestions.

The first time someone said they were sorry I just said "me too".. then I felt like an idiot. So the next time I simply said, "I'll be okay"... then I thought this was a bit dishonest because the truth is, I don't know that to be the case. I've managed a slew of other foolish responses as well... none of them seeming to be appropriate to acknowledge their concern and address the facts.

Thanks for all the suggestions. If you think of any more please let me know!
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Unread 04-07-2008, 12:27 PM #9 (permalink)
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My husband was approached by our neighbor yesterday and he said (my husband suffering from ALS, "I don't look the same, I feel the same and they moved onto another topic of cutting down a tree in our front yard". He won't discuss his illness with anyone except our immediate family.

Everyone is looking for the right words and the right words will not come. I would tell people that I am suffering from an illness and ask for their support and understanding.
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Unread 04-07-2008, 02:37 PM #10 (permalink)
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Along the lines of what Mike said.......when people are persistent, I often just say "yes well, everybody's eventually got to get something and this is what I got". Then I ask them how they're doing. That moves the conversation along.
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Unread 04-07-2008, 09:56 PM #11 (permalink)
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I can't really say anything from the side of someone who has ALS, but I am asked the same question when anyone ever asks what is going on with my dad. He was mr. fix it always doing something physical until he was diagnosed in december, and now, just 4 monthes later he's completely wheelchair bound, and can barely move his hands... so I guess I understand the whole "I'm sorry" responce. I usually just respond with something like "Well all we can do is make the best of the situation" also I use this to reccommend visitation to my father saying that we are just trying to enjoy the time we have here, and he really loves those little visits from friends and family.

I hope that was helpful!
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Unread 04-09-2008, 08:46 AM #12 (permalink)
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So far I am dealing with the situation the same as Sharonca and Liz.
But I have also noticed that lots of people hesitate to ask to avoid disturbing
so I try to be more open about the situation.
I guess lots of people do care but simply they don't know how to deal with it.
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Unread 04-10-2008, 10:13 AM #13 (permalink)
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I work in an atmosphere where the grape vine sends gossip-true or otherwize- faster than CNN. Plus some of my co-workers know my family, so the opportunhity for mis-information is ripe. I tell it all, as much as anyone appears to want to hear. THey might still screw it up but it will not be for lack of information on my part, LOL.
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Unread 05-05-2008, 08:18 AM #14 (permalink)
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oh my goodness, can I ever relate to this thread!

To keep it simple, (I can always tell when the conversation turns and when the questions start coming!) whenever someone asks about Dad and how he's doing, I usually just (flinch a little on the inside because I never know how to answer it honestly), 'he's fighting! keeping a stiff upper lip!' or something equally as cheesy in a quick as possible, one line answer that keeps me from getting too emotional.. sometimes, of course, if you hit me at a rough moment, my eyes still well up and I have to choke back a few words. That usually gets the message across better than words, however!

(Jeepers! I must be delirious from lack of sleep! I'm actually laughing at myself here. A hard balance between caretaker and daily work life. Oh my, we all find our ways to cope!)

I find the HARDEST thing to hear, is when someone doesn't understand what it is that is happening, says 'well, I hope he gets better soon!' AARRRGH! I KNOW they mean nothing but the best and they don't know any better, but REALLy it is like salt in the wound for me. Also, I know people mean the best, but the daily 'how's your dad doing?' question every DAY or every time someone sees me, also kills me. Sometimes if I am away from Dad for a few hours, I am trying my hardest to give my brain a little break from all the clutter ALS causes inside me. It's hard to be reminded of it in even the split second I might be able to give myself a break from it, when it is ALWAYS with you.
Anyhow, I hope some of you can relate, and maybe can get a little chuckle from me just jotting it all down into words!

But on a positive note, despite all the bleakness that the disease provides at times, when you have an enlightening moment, do any of you just feel like you just don't have any time to 'suffer fools'? Someone said this to me recently, and it was the most perfect phrase to put into words how I felt. I just don't have the time or patience for petty things that just don't matter in life anymore. Seeing what I see each day with ALS, makes me hold certain aspects of life and relations in a whole new light. As much as I despise the journey we're undergoing at times, I really feel as if there is something enlightening that is happening to me. And I personally am just a mediocre- spiritual person at best. I accept God. But sometimes I still question...
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Unread 05-05-2008, 04:33 PM #15 (permalink)
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Default How I respond

I am always straightforward in my reply. I say I have ALS or Lou Gerhig's disease. If they ask about the disease I tell them what I know. If they ask if it's terminal, I say it is but not for a while. If they say they are sorry, I thank them. Some people ask how I am every single day. Some people have avoided me since the word went out about my diagnosed.
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