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]

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.

[Farmgal from ND]

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.

I have been on Usana supplements for 1 year now and let me tell you that it gets the toxins out of your body !! About a 1 1/2 ago I fell face forward in JC Pennys and shattered my jaw so now I have a new titanium jaw, well its not that great, I lost ALOT of weight and am hanging on to every pound I have ! SO now Im more scared of taking Rilutek then ever, I have enough diahera then I can handle. Also because of my new jaw I also have a hard time talking so it will be really hard for me down the road. Say hi to your wife , amazing where you can find us GREAT ND folks !!!

[Farmgal from ND]

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

I have been having nausea for about a month now and my Dr. put me on Nexium to help with the indigestion, all I have to do is bend over and I have like bile come up and when I swallow it down ( this sounds grosz ) I have instant indigestion !! My nausea comes one day real bad then I get a break for 2 days ect ...Like you said its always something, or when people ask me how Im doing, I just say day to day !But should my diaphragm muscles be getting this weak so fast ? How long have you had ALS ?

[CindyM]

I don't have a DX yet. They just say it is Neuromuscular. All my tests were done back in 2006, and my EMG's showed fasciculations in my legs and renervation in my arms. Not enough to DX MND, so they warned me to prepare myself for getting worse and said to come back when and if I do. (The doc at the clinic is good enough to respond to any and all emails, thank goodness.)

I've been waiting for something dramatic to happen before repeating the tests. I stumble and trip quite a bit but usually stay on my feet so I decided that was not the dramatic thing I was waiting for. Then the sleep lab said I needed a bi-pap but they are calling it "Complex sleep disorder," not weak diaphragm muscles, so I guess that is not the drama I expected either.

I had a pulmonary function test today - mostly because I feel short of breath and dizzy and nauseous almost every day now. I think they picked up something but she wouldn't give me the results, of course. So that's the long story so far. I don't feel 100% but I don't feel like crap either, unless I feel nauseous. That is the one symptom I cannot get used to! :(

Thanks for asking!

[Farmgal from ND]

I am looking for Wandam, did you get my 2 e-mails ? Please let me know. Thank You !