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

[Al]

I'm not trying to have fun here. If you could just explain what it is that you want answers for then someone might reply but all you have said is What's next? No one knows that or can tell you what to expect. Your husband's breathing could get compromised and he may need a Bipap or a trach and a vent. He may need a feeding tube but I don't know if he has swallowing issues. You're not giving us much to work with here. How can we answer when you are being so vague. And by the way I do have a good friend with a spinal cord injury and he says he'd rather be him than me.

[onion]

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


Hey guys? Al determines who on who is not on my death bed???????

[Al]

Ok Onion you are not making any sense here. I think it's time to quit the banter here and if you could answer the questions rather than posing rhetorical questions and then babbling about no one wanting to answer you, we might make some progress.

[liz]

Onion -

Maybe if you browse through some of the old posts and see what people here talk about and what kind of information is shared, you can decide if this site is for you or not. If you do, you may notice the respect everyone here shows each other because we all understand the challenges we are facing.

I don't think; however, that jumping down Al's throat is going to attract others to respond to your posts.

Liz

[David]

Onion,

I'm shocked at your level of abuse.

Rule #1 is to be polite and respectful and goes without saying. Please keep your conversations civil or your account will be removed.

Actually, you've already asked to be removed, so I will honour your request.

Your account will be deleted momentarily.

[David]

Onion, your account has been banned. I've taken the time to email you a personal message regarding your account.

Please feel free to respond by email.

Take care,
David.

[sufernan]

You need a clue - here is my clue> Have some compassion!
Everyone here is going or has gone throughout this and has felt what you are feeling. Do you want to be here sharing your experience and finding some answer to your questions? Fine, we are here with you. We cannot change how you feel.
This clue comes from a young widow to ALS who is also now a single mom. I know pain and difficulties, I also know that people want to help if you let them.

[CindyM]

Hi Al. I think I've told you this in the past but it bears repeating. You do a great job of moderating and I know we all appreciate the support and information you have at your fingertips! A DX of ALS is the most debiliting and overwhelming news anyone can receive and we all handle that news differently. Thanks for being there for us!

[Al]

Thanks for the vote of support everyone. I'm not trying to be a know it all. I'm just trying to help with what I can. AL.

[Lindoglvr]

Al,

I think you did and do a fabulous job. Onion was obviously misdirecting her anger at you, rather than the nasty diagnosis her husband has. She's in denial and needs to go, as I'm sure you know, through all the stages of grieving that one goes through for death and dying and for horrible diagnoses of progessive diseases.

I just hope she can find some help for her anger, before it destroys her and also her relationships.

Linda

[CindyM]

Hey Al. Don't feel alone. I always try to welcome newcomers with some sort of acknowledgement message since it helped me so much when you all did that for me. I didn't think I was being trite and patronizing, which is how that got described. But this entire exchange was never about how we try to support each other. It was always about the misdirected anger and grief over the DX. So we're ok, all of us. Keep up the good work and thanks once again! Cindy.

[jhviv]

i think onion was drunk.

god knows I get angry, but that was crazy talk.

[liz]

I agree she may have been (very) drunk. She had posted on some other threads earlier that day in a very reasonable way then late that night she seemed like a totally different person. An unfortunate episode.

Liz

[Al]

I've seen her on a different forum using a different name and she is nice as pie over there. She must have been having a real bad day when here. Too bad, all we were trying to do was help. AL.

[quadbliss]

Wow Al! That was shocking. Take a deep breath and know that we are all right here supporting you. I have not been here long, but does that happen often? People with so much anger that they just lash out at anyone? Don't let it get to you. We all know how caring you are, and what a tremendous help you are to this group.

Mike

[Al]

There have been about 3 that were a bit hard to take but that one was the worst. So with 1500 members 3 bad apples isn't bad. I'm losing my ability to type using the keyboard really fast now and am down to about 1 finger and a half. I was just talking to my OT and telling her I need a new assessent because of how much this forum and the people mean to me. David (administrator of forum) and I were talking earlier today and he said that he wants to continue this on as long as possible which suits me fine. AL.

[sufernan]

Hello Al,
I am sorry to hear that you are having problems typing. This forum is so special and you are such an important part of it that I do not want to hear about any typing issues.
I like to mention that Daniel lost his ability to type very soon. He used a program called Naturally speaking and it worked really well for him. He wrote articles that were published and taught at the University with this program. It takes some time for the program to reconize and get use to your voice and pronunciation. The more you use it the better it works! Just a suggestion. You use a microphone and talk to the computer that translates what you said into written words. You will still have to correct a few words, but you may want to try it!
Take good care of yourself
Sunny
PS Today is my wedding anniversary - I miss Daniel so much! :cry:

[liz]

Al -

You are forbidden to bow out.

Dragon Naturally Speaking is what I ended up ordering for work. Found out as soon as I tried to install it that it takes up loads of RAM space so I'm now waiting for our I.T. guys to get that set. My OT said there is definitely a learning curve with it but then you can work basically hands free including mouse control. Mine cost $199.00 but there is a less comprehensive version for $99.00 - I'm not sure if that includes the hands free mouse control. I've heard this is also something you might pick up on EBAY for less.

There is also some sort of voice recognition program that comes built into Windows which you can access with some verbal instruction from someone who knows what they are talking about (for example, not me :? ). From what I've been told it is not as good Naturally Speaking but way better than nothing and all you have to buy is a headset.

Liz

[Al]

Thanks ladies. I know there are programs out there and I have an appointment with the OT on Feb. 8 and will inquire about both programs. Sorry about your sadness today Sunny but I know you have your son to help brighten your days. Hopefully the good memories will remain and the pain will lessen as time goes on. Thanks for being here at this difficult time to offer support to others. AL.

[sufernan]

Thank you Al!
I am here and I feel very blessed to know all these people. You touch my heart every time I came here and thank you for it.
My son is amazing. He is so full of energy and joy. He is 28 months and does not talk yet. Sometimes I worry about how loosing his father has affected him, and I wait and listen for him to tell me. He is the joy of my life and keeps me real, grounded and in my heart.
The funny thing is that he looks a lot like Daniel, the same beautiful eyes!
I have learned to take a day at a time, to take every minute and live it consciously.
I am very glad you are here with us! :-D
Sunny

[CindyM]

Oh Al. I hope you resolve the typing thing. This forum would miss you. Your friends would miss you. And it is too sad to think of how you will spend all the time that would free itself up if you had to give up being staff here! I'm keeping my ifngers crossed...Regards, Cindy

[mlb]

I go along with Cindy in hoping that you would resolve your typing issues. You are truly a SUPER moderator. The help, advice, research and honesty that you impart on these pages are invaluable and a true mirror of your soul. You are a kind and caring person Al. I hope your typing problem is only a temporary hitch and that you will be able to continue with the job that you do so well not only because of your skills but because of who you are. Thanks Al.

Anna

[anne]

Hi Al: I too hope you get your typing issues resolved. You were the first one to welcome me into this forum. Through you I have learned so much about this terrible disease. You have given me much support over the past six months. This forum would not be the same without you. Anne

[Peg B]

Hi Al et al:

Dragon Naturally Speaking Preferred (DNS) is the best program. I am a teacher consultant for students with special needs, specializing in voice recognition and some other specific programs, I have worked with voice recognition since 1993. My MND or MMN, we don't know which yet. effects my right hand the most. I cannot write a check without great concentration and difficulty but I use DNS - Dragon for most of my writing. I can no longer work and even though I learned the program for students originally it is a Godsend to me. I can still use some keystrokes but when I need to I can also use the program hands free.

Do not let anyone sell you on any other voice recognition program. It now takes me 4 minutes to train a standard computer using this program. It is compatible with email and virtually every other program. You can find pretty good prices also on Amazon.com. I bought two version 7 about 2 years ago for about 20 dollars each. It is now in version 9 with version 10 probably coming out soon. As soon as the new version comes out the last one goes on big sale. Anything at or above version 7 is great.

I live in the states but would be extremely happy to help you learn this. It is not difficult but the program learns how you speak and it learns phonetically so it works best when misrecognitions are corrected right away.

I have trained students, teachers and many other adults and have tried many other programs working with all sorts of Assistive Technology. Dragon is sold as a replacement for secretaries but it can be adapted to use to help people with a variety of special needs. I will stop now but please let me know if you want some help with this. It is my specialty and if I can help it would please me much. Sincerely, Peg B

[Al]

Darn you guys got me so misty eyed I could hardly type. Thanks for the input Peg. As I said I have an appointment on Feb. 8th and I'll be sure to mention the program to the OT. AL.