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  • Hi Chris,
    Thinking of you? How are you doing? My dad is still in the athatar (sp?) on a low dosage. He hasn't had any side affects from it. He went to his ALS clinic in Dallas for his check-up Friday. They said his progression hasn't changed since the last time he was there. He said he doesn't know if it's helping or not. There are only 40 people in U.S. who are in it. I personally feel that it's not the cure yet but I think it helps. I'm hoping spring gets here and stays. It has been a long yucky winter. Take care, Kim
    Hi Chris,
    A year and a half later, I have no regrets. Yet I don't "swear by it" or even really know if it helps. Many others seem to credit its use for a longer life, etc.
    I use it from bedtime to morning only now. I found it uncomfortable, or just annoying, to pace during the day. At night while on bipap I don't even notice it.
    On the plus side: My FVC was measured at 47% on Tuesday, virtually the same as pre-surgery.
    On the other hand: it does nothing for progression in hands and legs.
    Hang in there Chris. Feel free to vent on here anytime. We do care. Sending you a virtual hug, Kim
    Hi Chris,
    Thinking of you? Did you get a bi-pap. My dad uses one just at night and sleeps 100% better with it. You might have to experiment with several different masks until you find one you are comfortable with. Dad was extremely tired but feels more rested since he sleeps better at night with the bi-pap. Our youngest son who will be 9 next month just got back from visiting my dad (He's 78) in Dallas. I miss my dad so much since I was used to seeing him everyday here in Illinois. But, we don't have a ALS clinic like they have in Dallas. Dad still has his home here and is hoping to come up for at least a few months for a visit. He has a friend who is self-employed and has agreed to be his full-time care-taker whenever he is home. He has experience as a home-care provider as well. Hang in there. You are in my prayers. Kim
    Hi Kim, not such a good wek, havibg a terrible time sleeping at night, with all the thick mucus. They have me on mucinex and levsin for saliva. Keep waking up, trying to clear my throat and pulling the crap out.Tired all day, also have some breathing issues. Sleeping with 2 pillows propped up, think I made need bipap.See neuro Oct 23rd. Feel a little lightheaded also. I quit smoking (this is 3rd time) on Monm, hoping that will help. It os so hard to quit. I'm on Medicare and trying to get approved for Medicad, so I won't have to pay for Botox which might help saliva, no guarantees. May have to pay out of po key, trying to get price from doctor. Other than that same day in hell. This disease is just horrible, wouldn't wish in a dog. How are you doing? Take care, and God Bless
    Hi Chris,
    He said it didn't hurt, just a pinch... The nurse used a very tiny needle and injected two by each ear and two under his chin. The hanging lip thing has no solution yet although his new mask with the BiPap will have a strap to go around his head to help him keep his mouth closed. I'm glad you stopped smoking, I know the patch will work...I hope you can find a way to make this work...we start the oral hygiene regimen today...hooray, the bad breath will be less...Rog always was so careful about his mouth and breath... This has been so embarrassing for him.
    Keep me posted and I'll let you know how this is progressing!
    Ok I just.. notified the doctor that I think I need to have the feeding tube put in & let me tell you I'm scared to death, but it is getting more & more difficult to process the food in my mouth and swallow it. I need to hear from people who have this tube, cause I want to know what to expect and how this all works. Any info would be appreciated. I have read up on it some, but I want to hear from people who actually have this.
    Like, can you shower, go swimming, how does putting things in the blender work? Questions, questions? I have a bunch. Thanks much. God bless us all
    Well it appears that this pls disease is getting worse. My voice is almost gone & people cannot understand me. Someone lent me their Ipad that talks, but the guys sounds like a foreigner, but it is better than nothing. Also I'm going to have to get the feeding tube soon, eating is getting rough. Can anyone who has a peg, tells what is like to have one. I am really scared about this, and even more scared that I can barely talk to my kids and especially my grandkids. Some days I just wish this would all end & I know this is only gonna get worse. You know it just amazes me that they can find ways to put people in remission for cancer, do transplants of organs, but ALS just seems to be a really stubborn disease that does not want a cure or even remission of some kind. With all the technology we have it just blogges my mind.
    Has anyone had problems with the medication Riultex causing problems with their bowels? I am suppose to take 1 in am & 1 in PM, but did not work, then they told me to take 1 only with Fibercon which I did, did not work, then they told me to take 1/2 in AM with food & 1/2 in PM with food. My bowels are loose and slimy. Anybody else have this problem?
    Thank you so much Judy for welcoming to this site. I am having a very difficult time dealing with this situation. Mine right now is in the mouth & throat area, my speech is very bad & eating is very difficult & to make things even worse, by significant other was just diagnosed with prostrate cancer, and his son-in-law my also have ALS
    & his daugher & son-in-law have to move in with us. We are having a rough time. I guess I just want to know how bad this is going to get caused I'm so scared
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