Why do they scare the begeezuz out of PALS?

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brooksea

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Thinking about Halloween and being scared~~~

Why the heck do the neuros scare the crap out of PALS and their families by telling them to go home and get your affairs in order you are going to D I E!?

My husband's family thinks I'm a nutball for telling them he had 2-5 years to live. Any stranger would look at him and say what the hell is wrong with him is he drunk? That's it. And that in itself is a whole "nuther" problem!

This disease is very unpredictable, but don't you think they should say so when telling you? Why suck the very life out of you before you can even get out of their office?

It seems to me this disease could be handled in a much more positive manner. Am I wrong?
 

Al

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Well I guess they could wait until you've been there a few times. Might be a bit more humane. I guess they just deal in statistics not emotions. Easier on them maybe?
AL.
 

joelc

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They could at least apologize when we live to long.....lol

I was supposed to be dead last August! I plan on being around for many years yet!

They really don't know, so I wish they would not through these statistics out like they do! Take one day at a time and see where it takes you. Don't worry about tomorrow, there is nothing we can do about it anyway so let's enjoy each day as much as we can!
 

mamaoftwo

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My friend's father was diagnosed with ALS and told 18-24mths (his case was considered aggressive!). Well he finally died 12 yrs later. His daughter told me that once he passed the 24mth mark with ease, it became a joke in their family that he ought to have died by now. I agree that this is a very unpredictable condition and I don't think it helps to paint a picture of doom and gloom. Time and time again, people defy the odds. So really, no doctor can tell you. Not for ALS, not for any disease. Only god knows when your time has come.
 

hboyajian

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My family had the opposite experience. We were told Dad could live 1 to 2 years longer, and he was gone in only 2 months. I was upset that it was not even mentioned he might go that fast. It seemed the doctor was unwilling to be as forward about the bad news ( high carbon dioxide levels) as he should have been on my dad's last clinic visit 2 days before he died. I cannot really blame the doctor though. he is not God and could not have predicted with assurance one way or the other.
 

Carolan

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The doctor at our ALS clinic carries around a laminated card that says "Only God Knows." He said that he could tell us statistics, but I had already done so much research that we knew all of the statistics and so much more. But he emphasized that while statistics let us know what happens in general, it doesn't tell us what will happen to any one person. The one thing we know is that this disease is progressive (short of a miracle), but how that plays out is different in everyone. I joked that we could die in a car accident on the way back from the clinic, and then we wouldn't even have the opportunity to find out how my mom's disease would progress. Alas, we are both still here, and now that she is on a vent, she could survive for decades. Who knows? We all will die eventually, that's certain. The best thing is to be educated so that we can watch out for "red flag" signs, such as shallow breathing. This is probably the most critical issue, from what I understand. And if we hadn't checked my mom into the hospital in early October, she would probably have been dead by the next day. I am sorry for those who have been caught off guard by the quick progression, but I hope that you will continue to share your stories. It's helpful for everyone else to know about individual experiences, and I (and surely others) value your insights. Oh, and if you ask me, *everyone* should have their affairs in order. Not just those with terminal diseases.
 

brooksea

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Yes, I agree everyone should have their affairs in order, but that is not how people usually live life. After all nothing bad will happen to "me." :wink:

What I meant was that perhaps doctors should take the approach your Mom's doc took with "Only God Knows." Give a person a time line and they will probably follow it...

I think most docs don't believe in venting the patient and use this as a gauge to measure live expectancy. Who knows?
 

StephB

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Hi everyone,

I am new to this site. My 75 yo Mother was diagnosed in March 2007 w/bulbar. Her first symptoms were hoarseness in August 2006. She now cannot speak at all, cannot take anything by mouth, all nutrition by a peg tube, walking w/a walker. We were not given a timeline by her wonderful doctor and staff, but all us kids see that this disease is moving incredibly fast. We have home health aides coming into the home. We are considering bathroom mods, but at the rate that the disease is moving, we don't know how long she'll even be able to use the bathroom. I am afraid that we are looking at wheelchair and bed-bound soon. We plan to ask her doc at clinic next week, but I certainly don't want to ask with her being there. She has not come to terms with this yet. I know everyone is different, but we/I need more info on the different aspects of progression.

Thanks for the opportunity to be part of the discussion.

Steph
 

brooksea

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Steph,

I'm very sorry your mother has been diagnosed with ALS. Welcome to the forum.

It sounds like your mother found a compassionate doctor. Is the doc at an ALS Clinic?

Have you contacted the ALS Association in your area? http://alsa.org They have booklets that explain very well the different aspects of the disease and go into quality of life issues and assistive devices. Also be sure and register with the MDA, as they provide some funding for help with wheel chair purchase.

It is really hard to see a loved one suffer with this and I wish you and your family strength as she lives with the disease.
 

StephB

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Thanks for your reply,

She is being seen at an ALS clinic. They have been extremely helpful w/answering our questions, getting equipment, etc. We've found some community assistance for a hospital bed. I have phoned everyone and their brother to find stuff that we need or information, and these contacts have been kind enough to refer me to the next guy, and eventually we find what we need.

Mother's wishes are to stay at home, and that is what we want too. But I don't know if that will be possible. Those are the questions that we need to ask her doctor.

We were given booklets and videos initially, which we did all read. Maybe I need to view/read those again. Everyone is different, and is affected somewhat differently. I almost can't believe how fast it is moving. I see a regression every day. Seems that her age is a factor against her.
 

CindyM

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Hi Steph- welcome to the fourm although I am sorry for the reason you have to be here. We will help in any way we can- this is a great bunch of folks and there is a lot of experience around here. Cindy
 
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