Interested in info

[Farmgal from ND]

Hi, I have been diagnosed with ALS and PLS in 2005, since then 1 month ago I was newly diagnosed with just ALS. I have alot of questions about the disease and how it will affect me.

 

[Al]

Ok. Go ahead but did you try the search feature too?
AL.

 

[Farmgal from ND]

Hi

I cant believe Im finally talking to someone, and no I did not try the search area yet, I just started here. I have had a diagnoise of PLS/ALS for 3 years and now I was diagnosed with just ALS. Are you taking a drug called Rilutek ? My dr wants me to go on it.I have been going down hill for the last year, using a walker and now having problems with my breathing .

 

[Al]

Yes I take it and recently started on Lithium. I have no idea if they work but my progression until recently has been slow.
AL.

 

[Farmgal from ND]

May I ask a personal question, how long have you had ALS ? From what I cantell since I have been falling and dropping things I am on my 8th year. Is that a long time or not ? I hope I dont ask dumb questions, its just that I have so much to learn.

 

[Al]

I was diagnosed in October of 2003. Eight years is a long time you're probably doing better than most. I'm just using new voice recognition software sold some of my punctuation may be off. This is the first day that I've used it on the forum and it seems to be working not too badly.
AL.

 

[CindyM]

Your are doing great, AL!

And you too, farm girl. Go ahead and ask, vent, whatever you need to do. Folks around here are great.

BTW AL, did you notice my last few posts are free of spelling issues? MT helped me find the spell-check on my computer!

 

[Al]

actually I just thought you were sober for a change. Still haven't figured out how to make capitals at the start of my messages. just kidding about the sober thing.
AL

 

[CindyM]

Oops! You busted me, AL. Must be that merlot! :-D

 

[Al]

Been there done that. That's why I knew.
AL.

 

[Farmgal from ND]

I was diagnosed in October of 2003. Eight years is a long time you're probably doing better than most. I'm just using new voice recognition software sold some of my punctuation may be off. This is the first day that I've used it on the forum and it seems to be working not too badly.
AL.

I think the differance with me is that my diagnoise was PLS in my waist down and ALS in my waist up. I have had to deal with ALOT of spasms where it sounds to me if you are diagnosed with ALS you dont have spasms, is that right ? Now that my diagnose has changed to ALS I have been experiencing more breathing andnausea problems, does that make sense. P.S. better watch my spelling to then I like Merlot alot !

 

[CindyM]

Hi farm girl! I just had to respond to your comment about nausea. I battled it for months and was about to go soak my head, so to speak. LOL I had 2 daughters get pregnant and deliver and not an ounce of nausea the entire time. I on the other hand still have it and one of the babies is now almost 5 months old!

I think mine comes from 2 sources. they now think I need a Pi-pap so if I have too much carbon dioxide I feel light-headed and nauseous. And my diaphragm muscles might be a little weaker, resulting in indigestion for the first time in my life. Indigestion gives me nausea, it seems.

It's always something, isn't it? :-D

 

[sharon]

I was diagnosed in October of 2003. Eight years is a long time you're probably doing better than most. I'm just using new voice recognition software sold some of my punctuation may be off. This is the first day that I've used it on the forum and it seems to be working not too badly.
AL.

Hi Al,
My husband has a "galloping" case of ALS. He is still trying to type using his keyboard, but it is increasing become more difficult day by day. His lung volume is extremely low and has been using his BiPap a lot. His speech is extremely difficult to understand and we use a white board to communicate. Although, holding the marker and writing is becoming harder as well. You mentioned a voice recognition software program that you use. What program are you using and how are you keyboarding?
Sharon

 

[Al]

http://www.madentec.com/products/
Try this site I use their Tracker Pro system for typing sometimes. I also just got Dragon Naturally speaking 9 but you need to be able to speak clearly to use it. The Tracker program may work better for him. The ALSA/MDA may have a loaner or be able to help with funding.
AL.

 

[Bobby C]

Farmgal, I took Rilutek, Vitamin E, Co-enzyme Q-10 and Melatonin. I got dirrhea from all this and lost 15 poinds. My neuro told me to stop taking anything. Now i am on Dannon Activia, and am very well regulated (in bowel movements) so I am back on Vit E. But my wife insists that I try Rilutek again, because my progression is too fast to suit her and me. Day after tomorrow, I will start again. I hope it will work. But I suggest that you not take a bunch of other stuff with Rilutek, even if a neuro says do it. Unless you have an iron gut, which I don't.

My wife was a North Dakota farm girl when I married her. From the Belfield, Dickinson area. That has been 55 yeas ago.


Best Wishes. I hope you fare well with Rilutek.