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frustrated

  1. J

    How are you?

    How I hate that question now. It's become almost a default greeting. I know most people are trying to be kind by asking, but I honestly don't know how to answer anymore. I usually just say "We're OK" or "We're hanging in there". But honestly, we're not OK. And I'm sometimes just hanging...
  2. G

    EMG doubt.

    Hello everyone. I finally had my EMG. Muscles tested were muscles of the four limbs. I have a doubt. I forgot to say to the neuro who made the EMG that I see some alterations in the thenar muscles of the left hand, so the only hand muscle tested (left and right) was the first dorsal...
  3. H

    Neurologist visit

    Hello all, I need opinions on some troublesome clinical findings plus emg results. As many of you know I have been seeing and following up with Neuromuscular specialists here in Florida for a few years now. While I still don't have any firm diagnosis I do have an abnormal clinical exam plus...
  4. A

    using eyegaze outside

    I've been frustrated from not being able to use eyegaze outside where there is glare we've found a solution that work on my patio. glasses that are clear and won't darken. used a non disposable chux to cut glare! Sat out there all morning. It was heavenly!
  5. J

    Question about alternate PWC controls

    At clinic earlier this week, DH explained the troubles he was having controlling his PWC. He has lost just about all control of his hands, save his right thumb. The wheelchair rep suggested trying a different joystick, but when the OT came in (wish they could have been there together) he...
  6. KarenNWendyn

    Share your dreams

    I’ve always had an interest in hearing about people’s dreams. I’m talking about the ones people have during sleep. I actually did a thesis during medical school on dream interpretation. Last night I had one where I was walking around and realized I was wearing a BiPAP mask. Every time I...
  7. D

    Compensation and Pension (C&P) exam for an increase SMC payment

    Veterans with ALS need to know that in order to get their special monthly compensation (SMC) increased as their condition worsens they will need to get a Disability Benefits Questionnaire (DBQ) filled out by a doctor of your choice or submit for a C&P exam arranged by the VA. My recent...
  8. Kristina1

    weight and supplementation frustration

    My weight has been steadily dropping, and I was re-assessed by the nutritionist regarding my tube supplementation. I was supplementing about one carton per day, and she said she wanted me to gain 10-20 lbs, and changed my prescription to 4.5 cartons per day. Part of the reason for the massive...
  9. J

    88 year old Mom recently diagnosed...please help!

    My Mom will be 89 in November. She was always very busy, doing her own cooking, cleaning, etc. She got out with friends a couple of times each week. She was just diagnosed in July with Bulbar ALS and is having trouble speaking clearly. Is there anyone out there who was diagnosed at this later...
  10. C

    EMG Appt. Scheduled, a few questions

    Hi everyone, I posted a couple of months back about having a year of symptoms including left side weakness, limp, fasciculations (primarily in left arm), and grabbing things differently with my left hand. I have had blood tests and two MRIs which have both come back normal. I have an appt...
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