Recent content by bob_s

  1. B

    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
  2. B

    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...
  3. B

    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.
  4. B

    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...
  5. B

    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.
  6. B

    Telling friends I have ALS?

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

    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
  8. B

    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
  9. B

    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
  10. B

    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...
  11. B

    I'm new and would like to talk to people who understand.

    Welcome, Anne. I'm sorry about the rollercoaster ride of emotions you are going through. My diagnosis is recent enough that all of that is still fresh in my memory. But for me, 4 months after diagnosis, the emotional turmoil has settled down a lot. I can't promise you'll get there, but I...
  12. B

    Happening too fast

    Looks like you are planning far ahead. We aimed too low. We redesigned a bathroom for a roll-in shower and new commode with a bidet. But it took 10-12 weeks from planning to completion, and in that time I lost mobility so that now I can't get to the new commode.
  13. B

    Telling friends I have ALS?

    Months ago, my pcp (primary care physician) recommended that I tell old friends that I have ALS. I have put this off because I don’t know how to handle it. I find it awkward. This is a monster disease, and I’m progressing fairly quickly. Would it be better to let them remember me, if they do...
  14. B

    How long before a wheelchair?

    Thanks for all the advice. I'm now OK'd for a pwc after I slid to the floor off a chair while trying to sit down. It was a gentle landing without injury thanks to my cals, but she had to phone for help to get me up. And then right before a PT visit, I exhausted my daily energy quota trying to...
  15. B


    My legs are spastic mostly when I first get out of bed in the morning, and if I sit for too long during the day. I also have hyperreflexia in one leg. As others said, my neurologist diagnosed this.