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    Stiff neck and shoulders when sleeping.

    I have a totally paralyzed neck and drop head syndrome. During the day I have to hold my head and I use several things to do that but I don't feel stiffness, numbness or pain. But after falling asleep, shortly after I wake up with that sensation. Some times it is very bad. I don't know What to...
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    About Botox injections

    When everything else fails doctors recommend Botox injections to reduce saliva. My understanding is that Botox does not reduce other secretions coming from the sinuses, or from the lungs. I wonder what your experiences are with it as a PALS or CALS.
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    Decision about tracheostomy

    I am in that tough situation that I guess most of us with ALS reach at some point. Recently I went to the ALS clinic and they told me that I needed to decide quickly if I wanted a trach or not. They told me that if I waited and didn't have an advanced directive, I might end up having the...
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    BiPap settings

    I have a SystemOne BipapPro Biflex from Respironics. When I first got it they set the pressures to 4-8, then after a sleep study that was not done very well, they decided to change it to 8-12. As I was feeling uncomfortable with these settings and I felt that some air was going into my...
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    About Multidisciplinary ALS Clinics

    I have been attending every 3 months an ALS clinic. I can see some advantages but also some problems. I understand that this is the modality of attention most recommended, but I wonder if it is the most beneficial for all or just some of the patients. While it is convenient seeing several...
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    A probably better solution for a weak neck

    I have bulbar-onset ALS and this last year have had weakness in my neck that has been progressing fast. At the ALS clinic they gave me different models of neck braces that somehow helped. But I got to a point at which even with the neck brace it was hard to walk as my head was tilting forward...
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    ALSFRS-R is not very good

    I have seen many times a version of the ALSFRS that does not change the questions about cutting food and handling utensils when the person is on a feeding tube. I have not seen the original papers that may have been published about the revised ALSFRS, so I don't know if this is a flaw in the...
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    Symtoms years before getting ALS

    ALS has traditionally been considered a neuromuscular disease. But besides the fact that eventually it may have to be considered as a group encompassing many different diseases, it may also have to be considered a multi-system disease which affects more than just the voluntary muscles. As a...
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    A cat and a human getting ALS while living at the same house

    At about the same time I was in my home country taking care of my mom, and while I was starting to have symptoms of ALS, I noticed that our female cat was loosing strength in her legs. As she continued to deteriorate, she was loosing weight, the muscles around her spine were shrinking and the...
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    Endogenous retorvirus and HIV drugs

    I have heard of a trial that is going to test a combination of drugs currently used to treat HIV on patients with ALS. These drugs are supposed to reduce retroviral activity. I think the drugs are going to be tested on people that do show such activity on a test. I was interested in the trial...