New? Introduce Yourself - Say Hello

[sdrn]

thank you AL-sdrn

 

[Elo]

Hi all, thanks for all the help and support you have given me. Elo

 

[Teej]

hello everyone

I am very new to all of this technological support...but incredibly relieve to find it. Can anyone tell me if there is a chat room designated where we can go and talk live to people? My husband was diagnosed 10 months ago, and we are still reeling. We have four amazing daughters aged 10-19, and we have been married for 26 years. We were 17 and 19 when we married, and have essentially grown up together. The shock of this hits us every day, but we have been blessed with an amazing support system. I am just looking for others in my situation to chat with, and gather ideas from. I am so happy to have found this site...Blessings Teej

 

[David]

Hi Teej,

As a few of the people say, sorry for the reasons you're here, but nice to have you. A big warm welcome!

There is no chat program but feel free to post messages and people are usually able to respond the same day.

Have a nice evening.

 

[reginaswilling]

im new also

My wife regina has been diagnosed with ALS about 1 year now, she can not speak, has a hard time swallowing according to swallow study, and has a feeding tube inserted. She has lost about 35 lbs, since she has feedinf tube she takes 1/1/4 cans of fibersource 4 times daily, she is easily confused, losing balance and she is 49 yo. I am giving her vitanin E squeezing from gel capsule to formula aprox 1000 mgs. is there anything else i can ue in her formula to detoxify. Please help as we are not financially secure as I am disabled seizure person and she is hopefully going to get ssi benefits soon...any and all ideas would be great, we try and keep PMA positive metal attitude, so please help with advise or if anyone knows of any free clinics for detox or vitamins for feeding through a feeding tube....thank you....russell

 

[Al]

http://client1.sigmachat.com/sc.pl?id=144320

Hi teej. Here is an als chat room. I have been there a couple of times and it has quite a few people from the US and a few from England and Australia last time I was there. There is also one for ladies only and Jeannie that posts here has something to do with it. You could send her a private message and get the room from her. Feel free to ask any questions here. AL.

 

[waiters848]

My friend Di

Hi,

My friend Di has just been diagnosed with ALS, and told that she only has 6 months (give or take) to live. Her birthday is 10/12. She will be 56. She has been retired for about 9 or 10 months. She thought for a # of yrs., that she had something else(I'm so upset I can't think what the disease is called). Anyway, last week, her daughter finally took her to our really big hospital about 30 miles from here. I mean, her lung capacity was 39%, and they were sending her home? Good thing she took her, because, that is where they diagnosed her. I even think that hospice is going to be called in.

Her daughter called me to tell me. I am very grateful for that. I told her daughter I would like to either see or talk to Di (of course maybe she can't talk). Anyway, I haven't heard anything, but, that is ok. I am just going to start sending her a card a week so she knows I am thinking about her, and that I care. Maybe I will still hear from her. Even if I could just go over and maybe read to her or something.

Anyway, I happened on your site, because I googled "gifts to bring/send." Would you please tell me the appropriate thing to send/bring? I don't know which.

God bless all of you. I will look for your emails.

I can't believe this could be happening. This is sooo difficult (I don't mean to sound selfish). I know that she is the one suffering.

Thank you all,

Barb

 

[Al]

Hi Barb. Sorry about your friend Di. It is very difficult trying to be a friend of someone with this disease. Not knowing what to say or whether to hug them or just a hand on theirs is an individual thing. Trust your instincts. Do a search up above and type in What to give a Pals for a birthday gift or just Birthday and about half way down the page is the post about gifts. There are some ideas there that may help you.

 

[hope]

Barb,

I think the most wonerful gift you could give your friend is the gift of friendship. You cannot put a price tag on a gift such as this one and it is something you do not have to return to a store. It is absolutely priceless to be a friend. You sound like you are a wonderful friend to her and that is what she needs more than anything in this world. Support, love and someone who shows all the time they truly care. We do not have to be with someone all the time for them to know we care and love them if they already know this in their hearts. The comfort of words, a smile, a hug or just holding onto to hope for a loved one means more than you will ever know. Your friend is blessed to have a kind and care friend. Give the gift of always letting them know you love them.

sandy.

 

[jann]

I am new to this site and am still tring to figure it out. Wish it had instructions...lol I was a CALS..my mother was diagnosed in 1998. She has passed, but i still feel the need to hang around these sites and still i feel the pain that you all have. Please know yous are all in my prayers. Hope to chat with yous...jann

 

[Al]

Hi Jann. Welcome. I am sorry about your mother. If you go back to the top of the topic page
New Introduce Yourself there are topics called sticky's. These are some instructions how to do some things on the forum. There are other ones spread out around the other topics. Hope this helps. AL.

 

[james snook]

hi all

Who ever stated - “Stop the World, I Want to Get Off”, is how I feel now when I found
out about my 37 year old son - Rod when he told me he had ALS. I’m am a life long
“natural rescuer” type person, now at the age of 65 who has help others all my life.
And I’m at a total lost of what I can do to help my Son, now. I feel totally powerless
and lost in a world of sadness. Jim

 

[Al]

Hi Jim. I know it is a devastating thing to hear of an ALS diagnosis. The good thing, if there is any good about this is that younger people generally progress more slowly than us older guys. Does he have bulbar or limb onset? The best thing you can do for him is talk to him when he wants to talk, sit with him when he just wants to sit and cry when you both need to. Loving and supportive family and friends go a long way in making things more bearable. Feel free to ask any questions you would like information on. AL.

 

[trustinggod]

So glad to find you all

So happy to have found someplace to ask questions and find some help.
I have been at my friends side since the very first signs of ALS about 4 years ago.
In the beginning I was there to listen and cry with her. As she became weaker I became stronger and was able to do for her what she could not. For the past 14 months I have been at her side doing everything. Her husband still goes to work everyday so I stay with her until he returns.
I am looking forward to having a place to share with people who will really understand what ALS does to a persons life.
Thanks for being there.

 

[Al]

Welcome Trust. I am sure you will be a help to the people here. There are a lot of new people with a new diagnosis. They have questions and we need people that are going through it as a caregiver to help with some of the answers. Sorry about your friend but glad you found us. AL.