New? Introduce Yourself - Say Hello

New als diagnosis, not very good at negotiating this website, and have some tough questions. Where could I go to ask them?

Hi azevedoc -

Sorry to hear about your diagnosis. You've definitely come to a good place to ask questions. Sometimes you get better answers if you share just a little info about yourself, for example, where you live (generally speaking).

Wish we didn't need to be here, but it is nice to meet you.

Liz

Welcome to the forum. :smile:

Sorry you have to be here but we all are in the same situation, so feel free to jump in and ask any questions you may have for us. This is a great group of friendly caring people. Some have ALS, as I do, some are care givers, etc. There is a good mixture of people to answer any questions you may have.

It may also help you to search using the icon above if you have a question about a particular topic, but we look forward to hearing from you.

God Bless
Capt AL

I just love this picture, thanks for posting it. Very uplifting!

I'm New Here

Hi everyone. I've been lurking a bit lately and your information has been helpful; thank you.

My father was diagnosed with ALS in 1998. At the time we certainly didn't expect he'd still be here today, but he has had a good long run, playing golf (his favorite) until four years ago and living on his own until two years ago (he's divorced). But now he's in assisted living and soon will be unable to stay there anymore. He's on oxygen at night and yesterday was put on a feeding tube.

The problem is that my father, in some misguided attempt to protect us (my brother and I), will not talk to us about future progression of the disease or certainly not a prediction of time that he might have left. I well know that doctors only know so much, but it's very stressful to not have any information specific to him. Obviously I've read all the technical info I could about it over the years, but now I'm finding it very helpful to read your stories.

So thank you again and I'll see you around here.

Katherine

katherinem said:

The problem is that my father, in some misguided attempt to protect us (my brother and I), will not talk to us about future progression of the disease or certainly not a prediction of time that he might have left. I well know that doctors only know so much, but it's very stressful to not have any information specific to him. Obviously I've read all the technical info I could about it over the years, but now I'm finding it very helpful to read your stories

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Welcome katherinem to the ALS Forums.. Great people..and GREAT info here..
Mom was like your father when she was diagnosed.. I went and got the ALS Handbook, and started to read it..and then started tellingher some things, eventually we began to read the book together.. It might be away to get your father to open up to you and your brother..

Hey There, I am new to the site and to the diagnosis. I have so many questions that I sure hope you can help me answer or at least let me know I am not alone and crazy. I was diagnosed in Dec, 2006 and rediagnosed at a clinic in Jan.,2007 Placed on Rilutek in Feb, 2007. I am 53 and a new grandmother. Thanks in advance for all your patience and help. Becky

Welcome Becky. Sorry about the diagnosis but we'll do our best to help with information and support.
AL.

Thanks

katherinem said:

He's on oxygen at night and yesterday was put on a feeding tube.

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Sorry, I miss-spoke (miss-wrote?) yesterday. My father's decision to go on a feeding tube was made on Tuesday and the procedure is now being scheduled. He lives in Canada, so who knows if it will be soon or six months from now. :roll: But he assures me that he is doing this proactively to minimize the risks.

So thank you Mike (countrycouple) for your suggestion. I talked to my father this morning and tentatively asked a few questions of the sort, "I read about whatever, has your doctor talked to you about that?" and he was very good about answering direct questions. Of course he soon cut me off with, "You've got to understand that the doctors just don't know a lot of this stuff," but that was the most productive conversation about ALS we've had in a long time. So thank you for that idea.

Hey Becky -

You may be crazy but are definitely not alone. And the longer people spend time here the less crazy they feel, so I hope you'll stick around. There's lots of information and great support to be had on this forum.

Liz

PS - Congrats on the birth of your grandchild. That's really exciting. :-D

Never been in an on line support group. I have PLS.

My name is Frizzel. How do I get on board with this support group? I'm on line...just need to understand how this works. Thanks for any input.

I'm in my 11th year with PLS. Long story.. for now I've got to get to work. Question...
Wondering about electric scooter or manual wheelchair. ( my arms still have strength... )
PLS is moving into my left hand and fingers now. Any thoughts on the pros or cons of electric vs manual wheel chair? Thanks!

First Time

Granny said:

Hi All,
I am so thankful we were able to come here so quickly. Thanks to David, Al and others who have helped. It is wonderful.

Dana, when I saw I was a "senior member", I thought I would be the only one, as I had given my birth date at registration. I am happy to learn that "senior member" has nothing to do with age.

Happy to be here.

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I am a new member trying to find my way around ! Glad to see there is another Granny altho I am known to grandchildren as Grammy. My husband was diagnosed with ALS Jan 2006. His arms and legs are affected at present and doctors say it is slow progressing. I have enjoyed reading the comments on this page and hope to join in. CApe Cod

New Member

I am still working on using this site! My husband was diagnosed in Jan 2006 with ALS and is progresing slowly according to doctors. His arms and legs are affected and he is mainly in a motorized chair since a fall three weeks ago when his legs just gave out. His breathing is good and he has no problem eating. I have enjoyed reading about so many experiences in this forum. Thank you, Cape Cod

How can I help my friend?

I am new to this website. My goal is to learn what I can about this disease, and learn how best to help my dear friend who was diagnosed 2 years ago. I am normally not at a loss for words, but seem to be hitting that road block as his anger mounts. Suggestions?

My best friend was diagnosed with ALS, and it sounds as if he is at the same stage as your husband. What advice can you give me about how best to talk to my friend, and to cheer him up? He is beginning to really worry me: fewer phone calls (he lives about 4 hours away), little to say, sounds really down and out. I just don't know what to do next. Any suggestions?