Recent content by rmt

  1. R

    My husband is dying....

    K, if your husband is a veteran, his ALS is considered 100% service connected and he is eligible for MANY benefits. Our local Paralyzed Veterans Association helped us get all the paperwork in and my husband gets all his ALS care from the local VA for free. All his tube feeding food is covered...
  2. R

    My husband is dying....

    I'm so sorry to welcome you here but I'm glad you found us. This forum has helped me tremendously. Antidepressants have helped me, as has finding people to talk to that understand exactly what you are feeling. You are not alone.
  3. R

    Is this bulbar onset?

    You do know one thing that you have, celiac disease. And it may be what is causing your speech issues. While you wait for the EMG, you should work with your doctor to get the celiac under control and see if that improves your speech.
  4. R

    Is this bulbar onset?

    If you Google "celiac slurring" you will see lots of information about celiac disease causing slurring. I'm not a doctor but I would contact the doctor who diagnosed you with celiac and he/she about the neurological symptoms you are having and see what you need to do. I'm guessing you need a...
  5. R

    Split hand

    When the neurologist ruled out carpal tunnel, what tests did you have? Did you have clinical weakness or is it perceived weakness? Are there things you can no longer do with your hands? And what did the neurologist recommend as the next step in the diagnosis process? You mention seeing your PCP...
  6. R

    ALS Clinic - disappointed

    We have seen Dr. Weiss at UW and he was excellent. My husband gets most of his care from the VA, so we don't go to the UW clinic, but I would think that would be the place to go for a complicated situation like you have. I would call them directly (there is a phone number online) and see if...
  7. R

    CALS Roll Call Continued

    Mary, I'm glad you have an assistant coming to help out. And I'm happy that your PALS is thinking about going to the wedding. Fingers crossed that Omicron will have burned out by May! It is so hard to plan for things with both covid and ALS to worry about! Things are going OK for us. We are...
  8. R

    Guidance with emg results

    We see Dr Weiss and he is excellent. I don't know anything about interpreting your test results but I'm sure Dr Weiss will be able to figure out what is going on.
  9. R

    CALS Roll Call Continued

    For me, exercise and playing music are helping keep me somewhat sane. Exercise is a savior for me, but then with no appetite and eating less, my weight is getting too low. I've never been skinny, so this is a new problem for me. I need to work on making sure I eat enough every day. I also think...
  10. R

    CALS Roll Call Continued

    Mary, we are really looking forward to the Michigan game too! My husband is a big Michigan fan! And I know what you mean about needing to take care of yourself. I didn't realize the physical toll being a caregiver was taking on me until I got away for a few days over Christmas. For me, the...
  11. R

    Jdeanda's dad

    I'm so sorry for your loss. Sending love and peace to you and your family.
  12. R

    CALS Roll Call Continued

    V, thank you. I started on an antidepressant a few weeks ago. I think it is starting to help. I have a follow up with my PCP on Wednesday to talk about a dosage increase.
  13. R

    CALS Roll Call Continued

    There is definitely FTD involved. He mainly has expressive aphasia issues, but he also has such a flat affect now. He just doesn't seem care about anything. He has a very hard time expressing himself anymore, which makes it that much harder to know what other issues he is having. I've tried word...
  14. R

    CALS Roll Call Continued

    He recognizes some of the changes but not everything. I'm not seeing a counselor but I think I will start after the holidays. This is just so hard.
  15. R

    CALS Roll Call Continued

    I'm really struggling these days. My husband's physical changes in the last 3 years were hard to deal with, but the emotional and mental changes over the last year are so much worse. It is crushing my soul. At this point he has a "probably PLS" diagnosis, and is physically still very...
Top