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    Peg

    Hey Doug, My husband's initial symptoms were just like yours, and we, too, were advised to go ahead with the PEG earlier rather than later. Long story short, he got it, but the procedure was not the "simple" one that they suggested it would be (very painful for him), and even though we are not...
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    Things are progressing

    My husband also needed a bi-pap, which was not covered by insurance. The fine folks at our local ALS Association chapter made sure he got one on loan. The only things we had to pay for were the mask and tubing and the home visit to teach us how to use it.
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    New to forum and to disease

    Nikki, So sorry for you and your sister. My thoughts are with you and your family. My husband was diagnosed in September 2010, and we have three kids (currently 14, 12 and eight). First, we didn't rush telling them until we had time to process what was happening. Once we did, we took some...
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    Respiratory onset

    My husband's symptoms started in his hand, but for the past year, everything seems to have "stalled" except his respiratory issues. He's on the bi-pap 3-4 hours during the day and all night. The decline in his respiration has been rapid and steady, speech is moderately impacted, swallowing is...
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    Need guidance - just diagnosed

    Glimmer - So sorry for you and your family. I know that there are no words that will really help, but just know that you are not alone in this. My husband was diagnosed a year and a half ago, at 43. We also have three kids, and I can honestly say we were numb for about 3 months after the...
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    Advocating for CALS needs and rights

    Thank you for posting this. I cried when I read it because you actually articulated all those things I think about every day but am a little afraid to admit I do. It's a relief to know that I'm not alone with those thoughts and feelings, and that they are keeping other people up at night too.
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    New Here

    Thanks everyone for the welcome and replies. We are currently going to a neurologist and multi-disciplinary clinic at UCLA, and have so far been very happy with the care we've received. That clinic is tied in with the MDA, which has an ALS division, and they've been providing some great...
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    New Here

    Hey all. My husband (44) was diagnosed in September 2010 after about 9 months of hand/arm weakness. Since his diagnosis, his speech and respiration have been moderately impacted, and he's lost quite a bit of weight (but is stable). He hasn't experienced any noticeable weakness in his legs...
    • genavin
    • Thread
    • advice arm arm weakness back caregiving dad depression diagnosed diagnosis family financial health helpful kids new here questions reading scared speech weakness work
    • Replies: 13
    • Forum: Current caregivers
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