Recent content by clewbcg

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    Loss of Voice

    thanks Beth and Betty. We went to er yesterday for a chest xray and blood work. Nothing showed up, so hopefully this is just a bug. His temp is normal, but his pulse is up and his oxygen sat is down (we have an in home monitor-thanks to a wonderful home health nurse who got it free for us since...
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    Loss of Voice

    My pals has had increasing bulbar symptoms for the last 6-8 months. He has been very hard to understand lately, but on thursday, he got hoarse and then woke up friday with no voice. Has anybody else lost their voice "overnight" like this? We have a dynavox on order, but it doesn't seem right...
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    Hoyer or Pivot lift? please help

    Thank you Thank you for all of the advice-particularly as to insurance issues. I think I'm seeing the light now as to which way to go.
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    Hoyer or Pivot lift? please help

    thanks for the ideas and pictures Al, Thanks for the good idea about the plastic carpet runners. I never would have thought of that. That may make the hoyer lift more useable-we have alot of carpet. Micheline, thanks for the pictures. If you have tracks in different rooms, do you change the...
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    Hoyer or Pivot lift? please help

    Lift Questions My pals has a feeding tube, electric wheelchair and a bipap. We now are looking at lifts since his legs are getting weaker and weaker. I've looked at websites and threads on here and am still confused. Can anyone answer the following questions? 1. Does insurance cover the...
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    blender recipes for tube feeding/ do's & don'ts

    Thank you for the great answers and tips. Pals has been having ensure, instant breakfast (and something called two cal which he would only drink once, but is hi cal and would be good for tube feeding since he won't have to taste it). However, it was $50 for 12 cans. He has tolerated all these...
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    blender recipes for tube feeding/ do's & don'ts

    Tube Questions My pals is getting a tube on this friday, and I'm trying to get as prepared as possible. All of the above tips are very useful, but I'm wondering one thing. If you aren't tasting the food then why not just use the canned supplements? When we met with the doctor he didn't mention...
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    IPLEX and the Telephone Game: The difficulty in separating myth from reality on the i

    My pals isn't getting any physical therapy associated with taking iplex. He does still work with a yoga instructor and a physical therapist that he started with before the iplex. What kind of physical therapy do you mean? Is there some that he should be doing with the iplex? His neuro isn't a...
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    IPLEX for the rest of the world?

    update on iplex use I posted on another iplex thread as well, but wanted to update on my pals. He has been on iplex several weeks now, and no improvement. Sorry-but wanted to let people know. We did the lithium as well(no improvement), and I realize that people are frustrated about the...
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    IPLEX and the Telephone Game: The difficulty in separating myth from reality on the i

    Update on Iplex My husband has been on iplex for several weeks now, and I see no improvement. If anything is noticeable-he has gotten worse. Sorry, but wanted to let people know.
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    IPLEX and the Telephone Game: The difficulty in separating myth from reality on the i

    my husband is getting it for free (except for a small processing fee). he says that the compassionate use protocol calls for it to be free. he filed his paperwork in January and got in before the March deadline through the proactive work of his respiratory dr. he says this iplex drug has a...
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    IPLEX for the rest of the world?

    Pals getting iplex on Monday I just posted on another thread, but wanted to reply to your question. my pals is starting on iplex on Monday as part of the compassionate use. he signed up for it before the march deadline and is getting it for very low cost through his respiratory doctor. his...
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    IPLEX and the Telephone Game: The difficulty in separating myth from reality on the i

    PALS Starting on Iplex Monday My husband has been able to get iplex through a doctor and he is starting on it Monday. I'm wondering what kind of improvement did those who have taken it see? Also, any side effects? I am very wary of this iplex thing. It seems like a replay of the lithium...
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    How has your ALS "progressed"?

    my pals has 1,3, 2 and 4.
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    Husband's progression has sped up!

    Husband's progression has also sped up Hi Linda I'm so sorry about your husband and your struggles. My husband was diagnosed 9/06 and for a long time it seemed like he didn't really have ALS-his progression was that slow. Since January of last year though, it seems like it really sped up. He...
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