Recent content by Jocalyn8

  1. J

    Eye Tracking for Computer Use

    Do you use any software for quick communication with this device ?
  2. J

    Any tips for transferring to toilet?

    I learned the about "sara Stedy" at ALS conference for care givers. A man stood up and complained that his clinic never mentioned this device, because it wasn't covered by medicare. I literally change my life and my caregivers back!
  3. J

    Any tips for transferring to toilet?

    I have the same problem and I found a great solution its called a Sara Stedy. I got a cheaper version on Amazon for $500. Google the video. You need some arm strength.
  4. J

    Woke Up - Air Hunger

    Dear Pete, I am getting ready to start hospice, I appreciate you telling of your experience. I thank you for all your posts.
  5. J

    Things that you do not hear about ALS

    What a great thread! Ok my friends, How about all the mouth problems? Jaw clenching, chattering teeth, biting toungue/ cheek daily? And oh the nightmare dental visits? If I go out at night and it is cold, my jaw clenches so hard it is painful! No one told me about that..........
  6. J

    Things that you do not hear about ALS

    The enhanced smell has some positives...I have a teenager and I can smell beer/liquor or weed from across the room. He thinks I have super powers! LOL, you have to find humor where you can
  7. J

    More than I can bare

    Pete, Based on your posts I believe you to be a good man and husband. The strains of this disease makes all of CAL and PALs alike into people we dont recognize at times. Cut yourself some slack. I am going to try the Remeron for the sake of my hubby and kids. I will report back if it helps. Good...
  8. J

    More than I can bare

    Kim, can I ask how long did you take it before you saw results? I keep starting taking it but i feel so foggy/drugged the next day I stop. I want to feel like you described. I am quite low right now. Jocalyn
  9. J

    PEG-potential downsides to early implementation?

    I would recommend earlier than later. It helps with all the hi calorie supplements that taste bad, meds etc. Maintaining weight is critical, peg helps with that. Surgery wasn't too bad, and once you get Mikey button. Its easy. I swim with tagderm bandaid. Jocalyn
  10. J

    Peg replaced with mic-key

    Its really much easier. However, I will. Was very very painful pulling. Other one out. It was good they didnt tell me in advance! Jocalyn
  11. J

    PALS and sticky hands

    He is not crazy, I have same issue. I changed soap and no effect. ALS is the gift that keeps giving.
  12. J

    Have you started Radicava? Use this thread to discuss experiences with receiving radi

    I am doing home infusions using a port. I have noticed increased fatigue and weakness. I have not been sick or any other. External issues. In addition, I have increased leg cramps during infusions. I am continuing the infusions for awhile to see if this passes. I am on day10 of first round...
  13. J

    Erika's mom

    Dear Erika, You allowed her to have her family together. I am sure she is at peace now. Hugs, Jocalyn
  14. J

    enduring well meaning friends, family, and strangers

    Tillie, You are right. They want to make themselves feel better. I do not blame them it is what it is. ALS Sucks.
  15. J

    What Antidepressants are you taking?

    Hello Gang, I have really been struggling more than usual. I am weepy all of the time. I am taking Nuedexta. Those around me suggest I take an antidepressant. I am looking for recommendations on what is working for my other PALS. Prescription or otherwise... Thanks, Jocalyn
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