Newbie

[onion]

Hi,
Yesterday my husband and I went to Shands medical center, neurology department for second opion of ALS diagnosis. And yes, my husband has ALS and has probably had it for two and 1/2 years. The misdiagnosis was do to SCI (spinal cord injury). He has no use of his arms, a little movement in both hands, cannot walk, and could stand up till a little while ago. I now use a lift. All of these symptoms came on so gradually over the past years. I don't know what to expect next. The doctor said the disease is in charge as it spreads. I don't want to be a downer, I just like to know what I'm up against. Can you help?
onion

 

[Al]

Hi Onion. Sorry you have to be here but glad you found us. There is a wealth of information in the search section above. Just type in a few key words or phrases and it will point you in the direction of some topics that might help you. Or just ask what you need to know. We'll try to help. AL.

 

[liz]

Welcome. Sorry to hear your news. Stick around here for awhile and you'll find folks to support you both. No question is out of bounds so ask away.....

Liz

 

[CindyM]

Hi Onion. I am sorry for your husband's DX. Both of you are welcome to ask anything and vent about anything as you embark on this journey. The folks here are really caring and supportive. Please keep in touch!

 

[onion]

Edit, copy, paste, doesn't seem to work for me. But I did ask a question: What happens next? You all seem to have this patent answer: "sorry, we're glad you here, tons of resources, we'll help with any question you have" I've browsed and that's what you seem to say to everyone. And then the patronizing remark, "no question is out of bounds question" What the hell does that mean. I want one question answered: what happens next? Damm I know better to post this.....but

 

[Al]

What happens next is you have some decisions to make. Do you work? Can you afford to quit? Your husband will need 24 hour care. Do you have help or can you arrange help through the agencies that help ALS patients? ALSA, MDA. Do you want to keep him home as long as possible or put him in an institution? Putting it bluntly in answer to your question. He will get worse. He will die. How he spends the rest of his life is up to you as it sounds like he can't do anything on his own anymore. Sorry for being blunt but you did ask. AL.

 

[onion]

OK I really wanted to say dammmm you're clueless. But I won't be so arrogant. well I guess I am. When you brake your neck many years ago, and some how recover only to be met with als, .....I really didn't even read your response, because I was sooooooo angry you know nothing of sci,,,,....i'm so tired now...don't have energy, wish we were still in the SCI catagory, don't like this, don't want to be in your forum.

 

[Al]

Sorry Onion but I just don't get what it is you're looking for. Maybe someone else can give you what you are looking for. None of us wants to be here. Don't forget. I and your husband have ALS not you. We are the ones going to die. Don't get so overwhelmed with self pity that you lose sight of that. AL.

 

[onion]

Alright, got myself together. no harm meant...

 

[Al]

Ok. I understand it is difficult for you. Do you have any help? Caregiver burnout is a real problem with ALS. Every one of us has lost it here and vented. As long as it doesn't get mean spirited it is ok. No offense taken but you had me going there for a minute. Maybe you'd like to send me a private message and try to explain more about what you want to know. It might be easier. Click on instant mesage at the top of the page and it works like email. Type in AL for the person to send it too. AL.

 

[onion]

Really, well I'm going to be with my guy, as he goes through the stages of ALS, and eventually meets death.....Who's going to be there when I do? Don't give me your bulls---.

 

[Al]

I would hope you would have family and friends but with an attitude like that I can see you might be alone.

 

[onion]

OK super monitor
apparently you have the word.
And god bless

 

[Al]

Yes and the word is SUPPORT. For those that know what it is they want or need. AL.

 

[onion]

well I guess you've had your fun by me. can you tell me a way to remove myself from this site. I really don't think you'd give me an honest answer. Please someone else give me a clue
thanks
onion