1. 3694 thumb
    janik
    Sex: F
    Data Quality: 3 stars
    Bulbar: mild
    Arms: moderate
    Chest: none
    Legs: moderate
    I am: g
    I have:
    PLS

    janik was feeling good

    Had a visit from my brother.

    2 comments from other members. Only showing public users' comments. Sign up to see all comments!
      3694 thumb
      janik 5 days ago

      Thanks. Yes, very much so. It had been 11 months since seeing him last time

  2. 3694 thumb
    janik
    Sex: F
    Data Quality: 3 stars
    Bulbar: mild
    Arms: moderate
    Chest: none
    Legs: moderate
    I am: g
    I have:
    PLS

    janik updated her labs and tests

    • Bone Mineral Density Test, T-score - Spine-2 T-score on
    • Bone Mineral Density Test, T-score - Hip-2.8 T-score on
  3. 3694 thumb
    janik
    Sex: F
    Data Quality: 3 stars
    Bulbar: mild
    Arms: moderate
    Chest: none
    Legs: moderate
    I am: g
    I have:
    PLS

    janik completed the Mood Map survey

    • Function
    • Distress
    • External Stress
    • Depression
    • Emotional
    • Compulsion
    • Anxiety
    • Mania
  4. 3694 thumb
    janik
    Sex: F
    Data Quality: 3 stars
    Bulbar: mild
    Arms: moderate
    Chest: none
    Legs: moderate
    I am: g
    I have:
    PLS

    janik was feeling bad

    Woke up at 2:30 am and had insomnia until about 4. Didn't get enough sleep and have SO much to do today!

  5. 3694 thumb
    janik
    Sex: F
    Data Quality: 3 stars
    Bulbar: mild
    Arms: moderate
    Chest: none
    Legs: moderate
    I am: g
    I have:
    PLS

    janik was feeling good

    Turned in a finger oxygen monitor today, and got a haircut. Accomplishment feels good.

  6. 3694 thumb
    janik
    Sex: F
    Data Quality: 3 stars
    Bulbar: mild
    Arms: moderate
    Chest: none
    Legs: moderate
    I am: g
    I have:
    PLS

    janik was feeling good

    Met with my pulmonologist today and she said my lungs were good. She wants one more test to measure the muscle strength, because it is important in case I end up in the hospital. They might keep me on a breathing tube unless they know for sure that I have weak breathing muscles but which can manage on their own, otherwise the numbers would keep me on the tube or they might do a tracheotomy. I need to know this also and need a sleep study to provide further insight into my condition as well for hospital surgery prep to be done correctly.

  7. 3694 thumb
    janik
    Sex: F
    Data Quality: 3 stars
    Bulbar: mild
    Arms: moderate
    Chest: none
    Legs: moderate
    I am: g
    I have:
    PLS

    janik was feeling good

    Slept in this morning, didn't have excessive yawning, and had less allergy symptoms. A first for me in a long time!

  8. 3694 thumb
    janik
    Sex: F
    Data Quality: 3 stars
    Bulbar: mild
    Arms: moderate
    Chest: none
    Legs: moderate
    I am: g
    I have:
    PLS

    janik shared details about Tizanidine

    Stopped
  9. 3694 thumb
    janik
    Sex: F
    Data Quality: 3 stars
    Bulbar: mild
    Arms: moderate
    Chest: none
    Legs: moderate
    I am: g
    I have:
    PLS

    janik added a treatment evaluation for Tizanidine from

    • Perceived effectiveness for Stiffness/Spasticity: Slight
    • Side Effects: Moderate
    • Adherence: Always
    • Burden: Not at all
    • Dosage: 2 mg Daily
    • Advice & Tips: some people get better results than I did. It made me sleepy if taken during the day and too much made me lethargic.
    • Cost: < $25 monthly
  10. 3694 thumb
    janik
    Sex: F
    Data Quality: 3 stars
    Bulbar: mild
    Arms: moderate
    Chest: none
    Legs: moderate
    I am: g
    I have:
    PLS

    janik was feeling neutral

    slightly behind on things needing done and it is raining again!

    3 comments from other members. Only showing public users' comments. Sign up to see all comments!
      3694 thumb
      janik about 5 weeks ago

      Yes, I know the feeling. It's been this way for me at least the last 2 years. Can't seem to get caught up with all the work on my desk that needs attending to.

  11. 3694 thumb
    janik
    Sex: F
    Data Quality: 3 stars
    Bulbar: mild
    Arms: moderate
    Chest: none
    Legs: moderate
    I am: g
    I have:
    PLS

    janik decreased her Botox dosage

    Dosage150 units every 3 months (was 200 units every 3 months until )
  12. 3694 thumb
    janik
    Sex: F
    Data Quality: 3 stars
    Bulbar: mild
    Arms: moderate
    Chest: none
    Legs: moderate
    I am: g
    I have:
    PLS

    janik became a 3 star data donor! star earnedstar earnedstar earned

  13. 3694 thumb
    janik
    Sex: F
    Data Quality: 3 stars
    Bulbar: mild
    Arms: moderate
    Chest: none
    Legs: moderate
    I am: g
    I have:
    PLS

    janik added a treatment evaluation for Botox

    • Perceived effectiveness for Stiffness/Spasticity: Moderate
    • Side Effects: Mild
    • Adherence: Usually
    • Burden: A little
    • Dosage: 150 units Every 3 months
    • Cost: $100-199 monthly
  14. 3694 thumb
    janik
    Sex: F
    Data Quality: 3 stars
    Bulbar: mild
    Arms: moderate
    Chest: none
    Legs: moderate
    I am: g
    I have:
    PLS

    janik was feeling good

    I've accomplished a lot over the weekend and am fairly prepared for this week's doctor appointments, etc.

  15. 3694 thumb
    janik
    Sex: F
    Data Quality: 3 stars
    Bulbar: mild
    Arms: moderate
    Chest: none
    Legs: moderate
    I am: g
    I have:
    PLS

    janik updated her labs and tests

    • Bone Mineral Density Test, T-score - Spine-2 T-score on
    • Bone Mineral Density Test, T-score - Hip-2.6 T-score on
    • Aspartate Aminotransferase34 U/L on
    • Alanine Aminotransferase60 U/L on
  16. 3694 thumb
    janik
    Sex: F
    Data Quality: 3 stars
    Bulbar: mild
    Arms: moderate
    Chest: none
    Legs: moderate
    I am: g
    I have:
    PLS

    janik completed the Mood Map survey

    • Function
    • Distress
    • External Stress
    • Depression
    • Emotional
    • Compulsion
    • Anxiety
    • Mania
  17. 3694 thumb
    janik
    Sex: F
    Data Quality: 3 stars
    Bulbar: mild
    Arms: moderate
    Chest: none
    Legs: moderate
    I am: g
    I have:
    PLS

    janik was feeling bad

    Just received disability paperwork to be filled out by the end of the month and had 2 bills in the mail with the wrong amounts. Had to call and straighten that all out. Such a time consuming waste of my precious day. SO FRUSTRATING!

    2 comments from other members. Only showing public users' comments. Sign up to see all comments!
      3694 thumb
      janik about 2 months ago

      Thanks for the encouraging thoughts. Tomorrow may be better, though I will have to spend my precious time filling out paperwork over the next week or two.

  18. 3694 thumb
    janik
    Sex: F
    Data Quality: 3 stars
    Bulbar: mild
    Arms: moderate
    Chest: none
    Legs: moderate
    I am: g
    I have:
    PLS

    janik was feeling bad

    Allergies bad today and lots of aches and pains.

  19. 3694 thumb
    janik
    Sex: F
    Data Quality: 3 stars
    Bulbar: mild
    Arms: moderate
    Chest: none
    Legs: moderate
    I am: g
    I have:
    PLS

    janik was feeling good

  20. 3694 thumb
    janik
    Sex: F
    Data Quality: 3 stars
    Bulbar: mild
    Arms: moderate
    Chest: none
    Legs: moderate
    I am: g
    I have:
    PLS

    janik was feeling neutral

  21. Show more