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ClassClown

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I by no means want to disrespect anyone who is suffering on this site. I do not think I have ALS either like others who post on this site. I am simply looking for information.

The paper I'm writing is worth 60% of my overall grade in my graduate class. I'm also currently typing on my phone so I apologize for an misspelling/grammar that auto correct doesn't catch.

I don't really need statistics because I've already found that information. Mainly, what I need are stories. I will not give names or usernames in the paper. I wanted to find I place where I could obtain stories through a dialogue to give the words more weight.

Some question you could answer are...

How did your worldview change?
Are you able to communicate effectively with the technology given?
Has your nuclear family become stronger after diagnosis?

If these questions offend please take this post down. I really do not intend on making anyone feel bad. I'm just looking for research. Please do not get too personal.
 

Nuts

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Hi Clown, and thank you for realizing how difficult answering your questions might be.
There may be folks here who have the time and energy (physical and emotional) to help you out, and if so, I'm glad for you. I just want to make sure you understand if you don't get responses, as the people here are so deep into dealing with this horrific disease that they hardly have time to eat and most don't sleep. They come here for support, and for some this is the only place they get it.

So, please be prepared for some short responses and don't take it personally. If you haven't actually been in our shoes there's no way for you to understand what you;ve asked (it's about time and energy). If you don't get direct answers, feel free to read some current and older threads. You might find some things you can use there.

Becky
 

gooseberry

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Ok....are you really asking people with this disease how their worldview has changed? If you have read thru a number of threads you will find that many cals go it alone with no help from the family...sometimes the nuclear family gets closer...sometimes.

As for communication and technology, do you know the multiple ways this disease affects people and how it is difficult to use the technology. Do you know what tech is available?

Sorry, you caught me on a tired night ....well that is every night.
 

fionae

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I am sorry, I don't mean to be unkind.

Your coming to a site where people are dying, and those
who love them are fighting the battle of their lives to
save them,
using a silly (meant to be humorous?) name like ClassClown,
and using a smirky face with "cool" sunglasses...
I have to question any deep caring, or sympathetic understanding on your
part regarding ALS.

I have trouble even understanding why you would have chosen
this subject matter for your paper that is worth 60% of your overall
grade in your graduate class.

I am sorry...do you have any idea how immature that sounds to be
telling us who are affected (either PALS or CALS) by this horrific terminal disease
that your paper is worth 60% of your overall grade?
People here are DYING.

One reason that statistics are not really needed, is the hard truth
that 100% of those diagnosed with ALS will die from it, with a 100% certainty.
And there is 100% no cure for ALS.

This is a forum.
I have shared my thoughts, as a member.

Please consider what I have written here.

Sincerely.
 

LifeEnthusiast

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Good points and nicely said fionae!
 

lgelb

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Clown,
Your post requesting new original content is insulting to those who have poured their stories out here already. Use the search feature. Read them. They address your prompts.
 

CiCi

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Dear class clown,
My world view has gotten much smaller-----mostly because we are housebound and priorities have change dramatically. A picture perfect house and lawn are no longer important. The computer has become my contact with the outside world.

We have a real problem with communication as we are in our 80's and most advanced methods are too technical for us but-----we are married 63 years so I don't have problems knowing what my hubby wants most of the time.

We don't have family nearby as children are grown. No one really understands the problems or how ALS affects a human being and the family both mentally and physically unless they have lived with it. Our social life has come to a virtual standstill as my husband can no longer eat, talk or walk.

Sorry to paint such a bleak picture but this disease is devastating. Send In The Clowns.
 

Nuts

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CiCi has said what I've been thinking. The moments when I have what it takes to express this are few and fleeting, but at 6:14 am I have about 45 minutes to myself before we start the morning routine.

I stopped watching news. I didn't care. As CiCi said, it's all about my PALS. It's almost as if I've stepped out side of the normal stream of life. I know that at some point I will step back in, alone.

I'm one of the lucky ones; our kids are two to four hours away, but we are closer now than we were, especially with the daughter who was the most distant. Sadly, this is often not the case. One of my husband's brothers moved from another state to be near and help us. Again, we are the exception.

I'm trying to force myself to become aware of the outside world for my on long-term mental health, and because when I do talk to people outside of this situation current events is about all they know to talk to me about.

Mostly, however, I spend my day worrying about conserving my husband's strength so that what little he has he can spend doing something he wants to do. That means I pour every drink of ice tea, because just lifting the pitcher robs energy from his arms that drains the rest of his body. Oh, and I clean the floor often because he knocks the (plastic) glasses over all the time, but he clearly doesn't want the lids I offer, so I clean. Small things help him fell more normal. The effort they require on my part--well, to put it bluntly--my life is ALL about him. 24 hours a day. 7 days a week. 52 weeks a year.

Oops, the doorbell button next to my husband's bed just rang--only 20 minutes into the golden "me" hour. He's awake early, and so it begins, and I'm out of here.

One last anecdote: my husband wanted a Subway sandwich yesterday for lunch. Because eating is a pleasure for him and we know that one day he will likely be feed through a tube into his stomach, I try to honor his requests. I should have been gone only 20 minutes--Subway and the pharmacy, all within 3 miles. I turned left into the path of car driven by a young women with her two year old in the back seat. At one point I was told the State Trooper coming to do the report was 2 hours away at best (we live in a rural area). I had to call a neighbor to go be with my husband and my brother in law to help me because I fell completely apart at the scene of the accident. Way out of proportion to the event (no one was hurt). Many of our members have no one they can call. No one. Imagine how difficult it will be for me to leave my husband again, even for a three mile journey to the store.

Please read around, so you will understand some of the responses you've received. You don't say what your degree is in or why you've picked this topic. We're more interested in that than in how this affects your grade. On the other hand, if you wind up doing something with your education that helps people in our situation, well, then perhaps our sharing will do someone else some good

Gotta go. My day has begun.
 

Atsugi

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I have time.

My wife died nearly five years ago, so I have the rest of my life.

I’ll give my view as a caregiving husband and father.

Then I’ll PM to you what I think my wife would have said, if she could, because the view from inside the head of a person at the end of ALS should not be shared openly without preparing the reader.

Over the years of listening to hundreds of people with ALS, I’ve learned that, at some point in their journey, dying people become highly focused. They often turn inward, and sometimes shut out their families. Sometimes their preoccupation with fear and sadness makes it impossible for them to smile for their grandchildren.

Somebody once said, “Nothing so focuses the mind as knowing you’re to be hanged in the morning.”

How did your worldview change?

College plans, retirement plans, tomorrow’s appointments, tonight’s dinner—none of that matters. What matters is right now. Is my wife able to breathe? Is she in pain? I need to move her legs so the joints don’t get painful.

When faced with a task—any task, like reaching your finger inside her anus to remove a turd—you don’t think it’s gross, don’t wonder if you’re prepared, smart enough, or strong enough; you just do it. Doesn’t matter if you can or cannot do something; you just do what needs to be done.

I stopped judging people. You don’t know where they’ve been, what they’ve done or seen. And like the flip of a switch, they—or you—could be dead tomorrow. Life’s too short to place expectations on it.

For some families with ALS, they get isolated. Friends don't know how to treat you when you're headed down this road. So usually they ignore you. Even relatives will refuse to see you anymore. They're much too uncomfortable.

Are you able to communicate effectively with the technology given?

When she was bed bound, she played with speaking through the computer that is controlled by eye-gaze. But soon, that was too much effort. So she became quiet and I was the one who occasionally spoke while holding her hand. I told her she had raised two outstanding kids. In emergencies, I held up a letter board and looked for any indication that I was pointing at the right letter. I still smile and giggle a little when I remember her last words to me: I-T-C-H-B-U-T-T.

Has your nuclear family become stronger after diagnosis?

Absolutely, yes. Once the time was right to tell the children, we engaged them in all the daily chores and taught them how to handle the equipment for breathing emergencies. The kids, 13 and 15, crushed pills, mixed meds with applesauce or coke, and fed mom. They each could roll mom over, use the patient lift, and transport mom to the bathroom.

It’s physically and mentally exhausting when you have to maintain two lives, and one of them can’t scratch an itch, can’t reposition a foot, can’t blink often enough to keep the eyes from getting painfully dry. 24/7, for the rest of her life.

Some families are destroyed. Sometimes spouses just pack up and leave, rather than care for a person with ALS. Financially, the disease is devastating.

After Krissy died, I gave the kids some slack on attending school when they just wanted to stay in bed. Then I took us—and their girlfriends—on a European vacation as a way of resetting our group dynamic, marking a new beginning, and showing them it was OK to be happy again. Of course, this is expensive. But I figured that restarting the new family was that important.

ClassClown, the very first thing I thought when you posted this was, “What a stupid choice for a screen name. You’re looking for deadly serious answers on a sensitive subject, but you introduced yourself with a joke.” Learn from that.

Most importantly, my life became truly happy again. I remember my wife, I respect her memory. We gave her a helluva funeral. But now the sad memories are easily processed and my days and nights are filled with the fun and excitement of my earlier adult years.

So there's hope. For the survivor.

More “interesting” tidbits by PM.
 
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KimT

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ClassClown,

I've been a college professor (CPA/published author) for 30 years. I will be happy to share my answers to your questions but I'd like to ask you a few questions and also give you some advice......professor to student.

1. What is your major?
2. How did you choose the topic for your research?
3. How old are you?

My advice is to tell the audience (us) your thesis statement. If we have a better understanding of your research, we are more likely to participate. Your three questions show a disconnect. One is about worldview, another about technology, and the third about family. How are these questions tied to your thesis statement?
 
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