How much time do you spend on forum?

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sadiemae

Extremely helpful member
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Sep 20, 2009
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2,527
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Lost a loved one
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09/2009
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US
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Reno
Just curious, My PALS feels that I spend to much time on here. How many of you are the only poster in your family, either the CALS or PALS? How many of you have multiple posters in your family? It seems to me that it is either the PALS or the CALS, but not both. Comments? HUGS Lori
 
I am the major poster from this household. Wanda posts about every blue moon. She reads daily though.

Glen
 
I'm the only poster (PALS), and I spend too much time, probably, but it's one place I can still "talk" like a human being, and also talk about things that are of serious concern to me. And it's a great way to sit quietly and digest your midnight snack!
 
Lori I asked this very same question last spring and the responses I got then were the same as you stated. It was either the PALS or the CALS but rarely both. I know that I personally spend most of my day on here (off and on) but as the only way that I can talk now is through this machine I have it always with me so I may as well have the forum open along with my speech program.

I need this forum and my friends here for my well being but my wife Beth is busy working and spends a lot of her working day at a computer so she isn't that interested.

If your PALS is interested in talking we would be interested in talking to him too and then he would know why you need to be here.

Barry
 
I am the only one to read or post on here(cals). But I relay all important stuff to my hubby. Sad to say w/ 3 kids, full time job and pals I don't spend a lot of time posting. But I do come on here to quietly read quite often! Everyone on here is so wonderful that even though it is sad we need this sight, it's great to see such caring people!
 
Just me. I do share the information with Web. He has never spent time on the computer and becomes very frustrated with trying to do it. He has never complained one tiny bit about the time that I spend on the forum. :] The forum has become FAMILY, my lifeline and support group. :]
 
I am also on the forum alot. It is kind of my therapy! Also hoping that one day I will open up the forum and there will be a new found cure! I probably log in 3 times a day.
 
Right now I am not working so I do spend more time on the forum than usual. I have a laptop which is always close by and handy. I don't think the forum interferes with all the other things I do like spend quality time with my dad, socialize with friends in person, keep my adorable new home clean, walk the dog, go out to dinners or movies, etc. I think it becomes a problem if the face-to-face people get neglected because of the forum but I wouldn't let that happen.

I am the only poster in my family. My mom visits the forum and is registered but she only rarely posts anything. Also she is too afraid to express herself openly for fear that it would upset me, even though I have encouraged her to do so.

I feel like the forum gives me such reassurance that I am going about things the right way and that I am not alone in this. Sometimes the feelings of sadness are overwhelming and when I come here, I feel comforted.

I actually believe that my dad would not be here today if not for the forum. I know that sounds crazy but if it weren't for all of the first-hand knowledge I got about the PEG, he would not have been convinced to get one. My dad was really opposed to any life-prolonging measures and when I really explained what the PEG did and how it worked and I was able to directly quote from other PALS he accepted it. So there you go. The forum saved my dad's life.

Also, the people here are just so unbelievably smart and articulate and I JUST LOVE YOU GUYS!
xo Rosella
 
When first diagnosed, hy husband found this site. But it was TMI for him at that time-
"I know where I'm headed, I don't want to read about it" is what he said. I signed up the next month.

At first, I did spend alot of time reading up on past threads searching for information, so I could make a game plan. I still login most days, although I don't always have time to read every thread & post.

My husband also has said sometimes he feels I spend too much time here, particularly when he is upstairs & I am donwstairs on computer. I am making it a point to not be on at night- I don't want him to feel lonely. (he is out at church now!)

I had noticed before that there were not as many CALS, or at least they didn't post or even login as frequently. I'm now beginning to understand why- we have less & less time to spend on the computer. With all the regular household chores, and picking up the chores my husband would do, AND assissting him a little more as time goes by, ,little time is left for computer. I checked my email one day last week and had 25 emails! YIKES!
 
I am normally the only one on the forum. Greg has a username but is rarely on. He does prompt me to check the forum often. He also wants opinions and experiences of phases, equipment, etc. I've said it 100 times but it's the truth; this forum has been a God send to my family.
 
Mare, Web says the same :[
 
I spend too much time logging in checking on new info and also on those that are in same positon as me.

When you experience a loss due to ALS and this forum was your only means of speaking to those in your situation, it is hard to let go.

I pray for the day in "2010" that I can read a cure has been found for ALS. Until that time, I will most likely check in weekly on the forum.

God bless all and may we see a cure in 2010!

Patty
 
I spend a lot of time on the forum (PALS), probably 2-3 hours a day, checking it off and on. More time than I should as I am still working. But I work on the computer so it's always there. My wife is interested and may join eventually. She is a PT and could probably provide some useful information. She is pretty busy though and has never gotten too much into online chat.
 
Put it this way.. You guys are like family to me.. I care deeply about the forum members. I have spent a lot of time the last 3 years on here. I can say that it has been my important life line to people who are in a similar situation, and who have a super valuable insight into so much. I will be forever grateful for Al and Dave for keeping this forum alive, and turning it into one of the most important places on the internet.
 
"I know where I'm headed, I don't want to read about it"

Practically what my husband said too!

The information that has been put together on this forum has changed my mind and my husband's about a lot of preconceived ideas of the way life should be lived. It has helped us speak more intelligently with medical practitioners, therefore getting better help from them. We don't go to local support groups for the very reason my husband doesn't get on this forum - he knows where he's headed and doesn't want to be reminded.

I feel my husband would be in much worse shape, just out of ignorance on our part, if not for this forum and all it's caring members.

And yes I do spend too much time here. Down the road may be different...

Thanks to you all for your support! :D
 
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