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    Hair thinning?

    One of my most enjoyable things has always been very thick, lovely hair. I started using my BiPap in December. Because I am Bulbar onset, I also need a chin strap in order to keep my mouth closed. In the last two months my hair in the front has thinned horribly. I can see scalp most days...
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    Carpet runner

    Our ALS group loaned a Sara Stedy sit to stand assist. My CALS and I both think this will be a great tool for us. The only issue we have is that it is difficult to use on carpet. We have been searching on line and can’t find a plastic runner that indicates it would work for a wheelchair or...
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    Pain in ALS

    When we are in California we try to make an ALS therapy group that meets once a month. We find that the open discussions are very helpful. Today we had several caregivers as well as the PAls. Discussion came up regarding pain associated with ALS and there was no one there that had pain of any...
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    Spasticity in leg

    I have had restless leg syndrome for several years now. Actually longer than my diagnosis with ALS. Several nights now, my leg cramps and draws up almost to my chest! My husband has to massage it to get it straightened out again. I don’t know if this is an ALS thing or restless leg. It...
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    New Problems

    As you all know, problems show up on a regular basis. I always find that the best solution is to post here! The first is a problem with coughing. I use the cough assist and that helps, but for some reason I keep biting my tongue. Then it takes time to stop the bleeding. Is this just...
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    Excess Saliva

    I was diagnosed with PBP back in January of 2018 and it was updated to just ALS in February of 2019. Although I can't swallow or speak, the worst of this seems to be excess saliva. I have taken two drugs, a patch, and drops under the tongue. None seems to have helped including Botox shots...
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    Idaho2790- Requesting input about Lyme

    Kim, thanks for you sweet reply. Because we are residents of Idaho, there has been an issue trying to find a doctor in California when we are here. The hospital put us in touch with a large medical group in Chico and we had the first appointment yesterday. We were assigned to a PA which was...
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    Very Fast Progression

    I was originally diagnosed with progressive bulbar palsy in January of 2018. At that time we were told that there was an excellent possibility of having several years before things really became troublesome. In April 2018 I had a PEG put in and speaking was no longer a possibility. My legs...
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    Facial muscles

    I was diagnosed with progressive Bulbar Palsy I. January 2018. Although I could no longer swallow or speak by April of 2018, a PEG. helped and things were ok until Christmas of 2018. My limbs are weakening but I’m making the best of that. My biggest worry is my eyes. Even after sleeping well...
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    Changing out G tube

    I have an appointment at UCSF on Friday to change our the feeding tube since it is bleeding little at the stoma. I have not had a single day of a problem with the feeding. They set this at 1:00 and I was to see the neurologist at the ALS clinic right after. Got a call this morning from...
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