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    Telling friends I have ALS?

    I had great time at the Easter family gathering. I laughed a lot. My house was packed because of rain. I also sent an email to friends about my ALS. Some want to come see me. Thank you all. Bob
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    Question for Normal Day life.

    I used cushions for added elevation, then I only sat in chairs with arms, so I could push with my arms. Then I got a "seat assist." I have grab bars in the shower that are held by screws. I now use a shower chair that rolls into the shower, so it's very safe. I could be strapped in if that time...
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    Advanced Directives

    That is an excellent point. I have a POLST on my frig and have discussed it with my fire and police dept. so they are on the same page. However, I don't know if the details of how this is done might vary by city and state.
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    Advanced Directives

    Sounds like your dad is of sound mind, so at the end of the day, it should be his decision. And it's good that he is planning. I have a DNR and advance directive including no trach. I was against a PEG at first but, however, I was persuaded to consider a PEG tube if needed early in my...
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    How accurate are EMG's?

    In my case, one-sided weakness and fasciculations prompted the first EMG, but the EMG detected mild changes in my "good" arm months before I noticed physical weakness and loss of dexterity in that arm.
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    Telling friends I have ALS?

    It looks like nearly everyone is coming. That's just amazing and cheers me up!
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    Advise Help!

    Amber, You might want to do an internet search on Speakbook which seems very easy to use without using hands or speaking. Bob
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    I'm new and would like to talk to people who understand.

    Anne, I'm sorry everything is coming at you so fast. A breathing machine such as bipap will help you sleep better and have more energy during the day. I've just started to lose some lung capacity, so my doctor says I don't need a bipap yet. But I think of it as a comfort measure. Bob
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    Worried & Anxious

    I know you're scared and upset. That's an understandable reaction. My wife and I went through a similar period of shock after the first diagnosis. You're getting a 2nd opinion, so try to take it one day at a time. Bob
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    Telling friends I have ALS?

    Thank you all for the wonderful responses and advice. You have helped through what had seemed a tough decision. But now I have a better idea what do. My wife and I were also worrying over whether to host our traditional gathering of extended family from all over the country for Easter this...
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