New? Introduce Yourself - Say Hello

Hi everyone -- through the fantastic online ALS support group I'm privileged to be part of, I was directed to alsforums, which I attribute to the Lord blessing me, which He does every day. I'm going on 60 in a few months (Lord willin'), diagnosed w/ ALS at UAB, Birmingham, AL in Feb. '06--w/ lower limb and bulbar onset. I'm so grateful for all the information being shared by the members, and especially thank the Forum for Scam Watch! This was truly an answer to prayer, because I'm sort of being "pressured" by very caring non-ALS friends to jump onto the Edney bandwagon, etc. which I never had peace about! Thanks for the boldness to name names, so we know which grievous wolves are out there lurking around for us little bleating sheep! The first time I visited the site, I felt an umbrella of protection open up over my head! and a special thank you to GrampAl for his volunteer work on our behalf and such kindness in his comments. God's blessings to all today. fla-cherie

Hi Holly. It's too bad that you have to be here with us but you will have many friends here to share with before very long. Welcome. AL.

Welcome to fla-cherie as well. I've been to Pensacola a few times. A great place. As long as the hurricanes stay away. Thank you for your kind words. We all do what we can to make life easier for the members. AL.

Hello sparklin im new to the board also but have met some great people.
Im glad to meet you but sorry it is under these circumstances.
Ive found alot of helpful information here and am sure you will too
LittleHeart

Hi xsparklingwinex, Lil heart, and Fla

:-D Glad you found this site. Welcome to one of the worlds worst clubs to be a member of, but at the same time I hope you can somehow enjoy your time here, make friends, and find answers to some of your questions. Welcome and the best to all of you. I'm fairly new here myself. Just DX in May this year. May God Bless.
Big AL

I like that last post "welcome to one of the worst clubs to be a member of " -
made me laugh, when the last couple of weeks haven't been very funny.

I have come to this site because a friend's husband has recently been diagnoised with ALS. It has been devastating for them and very, very sad for those who love them. I guess I'm looking for guidance in how to help - also for information. It is taking my friends a lot of time to come to grips with the diagnosis (as I imagine, it would for anyone) - I want to be of help, but I also don't want to "butt in". I know they need time.

Hi Pearl

Hi Pearl:

Welcome to the "club". I definately wish I wasn't a member of. My best friend was diagnosed in March 2006. Only 41 years old and three young kids. I have only been a part of this "club" for six months, but here is my advice to you.
Give your friends their space, but always let them know you are near and care. Your love and friendship is what will help them through this. Don't give them advice, listen when they need you too, and let them lead the way. Start fundraising for your local ALS walkathons and raise awareness for this horrible disease. Don't walk away, when the going gets tough.
This is a hard thing to deal with for everyone. Take care of yourself and stay strong.
This is what I tell myself every day. This forum is a wonderful place to vent, ask questions and learn more about the disease. It amazes me everyday that on this site, the people whohave ALS or are Caring for someone with ALS, have the strength and love to help others everyday.

All of us are here for you.

Barbie :-|

Thanks Barbie, you have good advice. I'm a little obsessive compulsive, so it is difficult just to sit back and let them take the lead but from what I'm reading that is what needs to be done. It's just so temping to want to step in when all they can do is sit and cry right now - but , I'm thinking that that is probably what they need to be doing right now - they will manage in their own time. Just so very hard to watch.

Although I do not check in regularly, it is so comforting to know that there is a support group available to me in my own home at any hour of the day.
Thanks so much
Paula from PEI

New Member Saying Hello!

Hi everyone,

I am new to the ALS forum but not new to the ALS disease. My husband has had ALS for 6 1/2 years now. He is in the later stages of the disease but his progression seems to be relatively slow in nature. I am here to help anyone with questions about the progression of the disease or what we have tried and found worked best for us. I still have my husband living at home with me and I relish every day with him.


God bless,
Karen in Texas (Dallas area)

Hi Karen and thanks for joining. We need some old timers here to kind of let some of us relatively short timers know that there is hope. 6 1/2 years is great. Don't take that the wrong way but with so many of us passing before 5 years it is almost a joy to hear of someone doing well or as well as can be expected with this disease after more than 6 years. Looking forward to your input. AL.

I'm new to this site and come from way down under (New Zealand).
I have PBP and lined up for a PEG. Apart from that I am fine. We have just returned from China where I walked on the Great wall and Florida where I became a child at the marvellous theme parks. I'm living it up while I can!
'One day at a time sweet Jesus, thats all I'm asking of you'
love to all,
Merle:-D