Have To Leave Forum

[CaringWife]

Hello All,

Thank you to everybody who has reached out to me. I have just requested to be removed from this forum as my husband is very upset that I am on it. He wants me to remove my user name and posts immediately because he says I have given way too much identifying information. He is self employed and is still working. He wants to work until he drops, and says this site could be a liability for him. I will miss all of you, and may try to find another way to be on here in cognito. God bless each of you, and I will still check in unofficially to keep track of those I've met, and will pray for all of you CALS and PALS.
Ellen

 

[ottawa girl]

Ellen,

Come back! Just be someone else. From a different town. With a different PALS. One who is not the boss of you. (Joking!)

This place is a good place for you.

A rose by any other name...

 

[Nikki J]

What Elaine said and I think you can edit your profile on your current name so it will show different info on all your posts already made. Change your location at least

 

[CaringWife]

Thanks guys. I so wish I hadn't used his name in my username. Is there any way to edit that? I can't see that there is, but I am not very computer savvy. If anybody knows, please give me advise. I have already sent a note to the moderator asking to have my posts and user name removed. Don't even know if that is possible, but that is what my husband wants. If that does happen, I will come back in cognito, but I'll let you know somehow who I am.
Ellen

 

[skipper66]

Sorry that your husband is upset. I don't give out my hometown for safety reasons since I live in a small town and my occupation could identify me easily. I'm probally to trusting of people for the most part. But, 95% of the PALS/CALS on here I don't worry about causing me any harm. But, you never know who might pop in as a troll. My dad is happy I'm on here so I have someone to reach out to. Best of luck to you and home you can return at some point. Kim

 

[CaringWife]

I've asked the moderator if I can change my username, and the names of my husband and me in the posts that already exist. There are only a handful of posts because I just joined on July 8th. I just edited my town and state to some place else. I will wait to hear from the moderator about what can be done. Thanks for good advise. I am way too trusting and naive for my own good. Wish I had just been annonymous from the beginning.
Ellen

 

[Nikki J]

I don't think you can edit the name but David can delete at least the body of your posts maybe everything. See you edited your location if you want you can edit your reason for being too

 

[Nighthawk]

@Caring wife:

You could still create a new Forum account under a different nickname that disguises who you and your husband really are, you also can use a different State and a different town.

This Forum is very useful to CALS (like yourself) and PALS alike.
I've seen people asking very important questions here that have been answered and have solved a lot of problems for that caregiver/patient.
Although, questions can also be formulated at the ALS Clinic but the dates between appointments make difficult for you to get answers in a timely fashion like here where you can ask questions in real time to people who have to live with the disease on daily basis (caregivers/patients).

Furthermore, we all are like a family here.

Although, I would respect any decision you guys make, I'd sill like you to stick around even if using a different nickname and/or State/town.


Take care.

 

[Janie H]

I have been here less than a month but have learned so much, this is the reason I'm not married, I tried a couple of times but I can't be told what to do, some men ( the ones I married, always want control) God bless you and your husband and I agree that you should try a new username and stay here. He may not understand that you need a place to vent and that you can be helpful to us.

 

[affected]

I also hope you will stay!

my PALS doesn't even know I come here and I have to be very careful of giving away identifying information, but I've found that I don't have to tell enough detail to identify and yet still get great support.

for that support, much comes from reading what other say, reflecting and identifying, then putting my 2c in as replies, reading how that thread develops.

The support is just far too important to give up, but I do understand your husband has concerns, so just learn to do this stuff anonymously. I think I'm almost getting the hang of that

I often feel supported when reading a thread I don't even join in on. What an important place this is, it's like a lifeline.

 

[Katie C]

I agree.. reinvent yourself as someone he won't recognize and stick around. In the meantime, you can always just lurk and get info from others questions.

 

[Atsugi]

So far all the posts have urged you to disobey your PALS wishes and some advocate going behind his back. Hmmm.

 

[CaringWife]

Atsugi, he isn't upset that I am on here, he is extremely upset that I have given out so much personal info. That is all. I want to be here because you have all been such a help to me in such a short time, and I want to be there for all of you and everyone else who will come along. Also, FTD seems like a distinct possibility which we will be pursuing in the near future so that could play into his being so disagreeable and over reacting about it.

 

[HalsWifeFran]

Ellen -

I feel for both you and for Rusty. It is so difficult to give another person advice because no one except the person who seeks that advice can know all of the intricate complexities in that person's life situation.

That being said, my first recommendation is - think about how you can help Rusty try to communicate more about this. Let's assume Rusty has FTD. Whether or not Rusty has FTD, he is still Rusty. He is still your husband. He still, on many levels I'm sure, loves you as much as he ever has. He is probably very upset about his ALS, his progression, his decreasing ability to work, contribute to your income. He could be very terrified of the future. And he might be acting more impulsively and emotionally than he has in the past, but that doesn't mean he's not in there somewhere wanting to be understood, and respected and loved. By you especially.

Being a CALS has its challenges. Different from those faced by the PALS. One big one is to support and love our PALS to the best of our ability.

 

[John1]

Ellen,

Two points to help you with your problem. First, as Katie suggests, create a new name and an address that will not identify you or your city. Perhaps you already have. Secondly, as creator of this thread, I believe you can close it. Go to your first post and look on the line above the top of your post for "Thread tools". Click on that and under "moderation tools" ensure "close thread" is highlighted in green and click "perform action". This will lock the thread. No one will be able to post to it and it will soon drift down and off the page and few people will read it.