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J Garcia

New member
Joined
Aug 7, 2010
Messages
2
Reason
PALS
Diagnosis
07/2010
Country
US
State
Florida
City
St. Petersburg
Hello people,

Just testing the waters here a bit, I'm posting under the account I just made for my mother. She was just finally diagnosed with ALS although she has been going rapidly downhill since January. Mom is the next best thing to a complete internet noob, she can barely manage to post an email by herself and has never been on a forum.

She needs support and advice, not a bunch of trolls making her life worse. I'm sorry for not taking the time to check thru the posts myself but I'm a bit overwhelmed right now myself adjusting to being a 24/7 home health aide for her and dad (he has liver cancer).

Tell my honestly please, is she going to be welcomed here and are the moderators doing their jobs or do I need to look elsewhere?
 
J, that's sort of a loaded question. There have been problems from time to time. In my opinion, the moderators do a great job. For an ALS patient, which I am, I think this is a very loving, kind and helpful forum. I think most of us have times when we're feeling beat up and can be "short" in our responses, but it is not typical. I'd let my loved one on here and be comfortable. I'm very sorry your dad is also ill with liver cancer. Please bring your mom in and we'll do our best to be helpful and honest with her.
 
I am sure she will love it here. We are a great bunch!
 
This forum is like a little world within a big world.The moderators always do the best they can(what more can anyone do?),which is superior,considering they have their own problems and considering the work load.I think it's a great system. I think you need a support system, and this one is incomparable.You will be welcomed by everyone.

It's impossible not to learn a lot and make some great friends!
 
Yes, please feel safe in recommending this forum to her, we are also here for you! From time to time, unfortunately, something happens that needs intervention but not towards a peron affeced by ALS. We have had some disagreements with people who come here who think their doctors are wrong telling them they do not have ALS. They insist they do when their symptoms are not those of ALS.

But she has an ALS diagnosis and you both need support and that is the purpose of this forum. With such a compassionate post she will be welcomed, as you will also, with open and loving arms.

We do our best!
 
Thank you guys/gals for the nice replies,

Currently it is a trial for her to use the little low slung computer desk in the living room but I have donated my computer to the cause and I am setting it up for her on a higher table. Tomorrow or Monday I'll get a Wi-fi modem to go here and a wireless card for that computer and get it online for her, then try to cojole her into posting.

I really think that she would benefit from a forum like this, being able to discuss problems and limits and find out how others have worked around them would be a big help. Also friends and social activities have always been a hugh part of her life, you could never go anywhere with Mom without her running into someone she knew or having her strike up a lengthy conversation with some complete stranger. Now she is pretty much housebound and I'm worried she will just give up and quit without her accustomed social interaction.

Sure the internet isn't quite the same thing as meeting someone face to face, but she would still have lots of people to "talk" to on here. I'll just go ahead and apologize in advance now for any netiquette violations she might commit, like I said, she is a complete newbie, so please cut her a little slack. I doubt she will do anything worse than dig up three year old threads and add "me too" in a post or perhaps try to evangelise people a little heavily, but she has to learn what is and isn't accepted just like the rest of us did, by doing it.

Anyway, if you have read all of that, I thank you for your interest and hopefully the next post from this account will be Mom introducing herself, as soon as I get the other computer online here.
 
She will be welcome here! This forum has filled the same void for me as what you described about your mom. I hope it will do the same for her.
 
hi j garcia,welcome to the forum.
as mentioned there are isolated problems as in any other things but on the whole we are one big happy family.
there is a tremendous amount of love and support for each other here,we look out for one another if someone goes missing or needs more hands on help.
on our profile pages we post pictures in albums of ourselves and familys ect,this helps in feeling closer to each other .
i have met some of the most fantastic people here who are now very dear friends.
your mum wont be alone here,we will do our upmost to make her part of our forum family.
take care;caroline
 
Welcome to you and your mother. The people here are amazing, and the support keeps me going. These folks will be here for your mother at any time of the day. No question is off limits. Someone has or is experiencing almost anything that your mother is going to go through. You're all in our thoughts and prayers.
 
J
I am so sorry you have such a heavy burden but you parents are lucky to have you there to help. This is a great place for support not only for you mother but for you as well. I am the primary caregiver for my wife who was diagnosed in sept 07. She just last week got a facebook page but I still can't get her on here, but I come here every day. I don't always post but I find it a very helpful reminder that I am not the only one out there helping someone they love with their struggle. Welcome
 
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