Recent content by Janders

  1. J

    Excessive use of toilet

    I had the same issue with my husband and him thinking he needed to have a movement many times a day. Many caregivers talked with him about a diaper, but he refused. One caregiver had a good technique for speaking with him in a supportive but firm way saying maybe he would try it and it would...
  2. J

    Update 18 months post ALS diagnosis - question re "too harsh"?.

    Thank you for your kind works. Very much appreciated.
  3. J

    Update 18 months post ALS diagnosis - question re "too harsh"?.

    My husband, age 73, had 3 normal EMG's before 4th one raised likelihood of als and second six months later confirmed. My husband was convinced he had CTS before and after ALS diagnosis; and attributed other early weakness and pain to rotator cuff issues, meniscus issues which is what it felt...
  4. J

    I apologize for asking here. But, I am in need of advice and experience to articulate my next appointment.

    Apologies, actually intended for another person...
  5. J

    ALS and Anger

    This is very difficult, to be cut off like this when you only want to support. I appreciate your intention to support and your caring. I encourage you to be patient as you hold him in your loving thoughts. My husband was very angry for over a year. He is better now. Antidepressants helped...
  6. J

    Night sleeplessness

    My husband is frequently walking at night. He is on antianxiety med. Sometimes he thinks he has to urinate. Sometimes he is not able to. Mostly he just feels restless. This is hard on the caregiver as he can no longer sit up or lie down on his own (even with a hospital bed). Usually he is up...
  7. J

    Should i do another EMG / Second opinion

    I so appreciate the struggle with diagnosis and associated fears and concerns. Appreciate you reaching out for support. My husband had a total of 4 emgs in his diagnosis journey. The first two were negative and we were assured 'can find no major issue'. As weakness and tremors progressed...
  8. J

    Not convinced

    Dear North Bay, Reading your post took me back to my husband's first diagnosis last January. We took the same journey of multiple tests until we reached Columbia Neurological Institute. They stated similar things as you heard...nerve damage throughout meaning deterioration in function...
  9. J

    ALS and Toxicity

    Thank you Tillie...will do
  10. J

    ALS and Toxicity

    Hi Lauri, Thank you for your cautionary remarks. I do so appreciate it. I will let you know that the Dr. discovering the high toxicity is an MD, and the sister of a good friend (or otherwise I could not get an appointment as she is so busy). It's costing very little as only an occasional...
  11. J

    ALS and Toxicity

    My husband diagnosed in January with lower motor neuron disease, ALS. He seemed to respond positively to PT, and looked more stable on his feet. At the same time, hand function declined. We went 'off the grid' in March seeking input from integrative MD who performed toxicity studies...
  12. J

    How do you live day to day. Comments, share your experiences? To trach or not to trach?

    I have read these posts with gratitude for the willingness to share your journeys openly, and the offers of understanding and support. I also appreciate the useful ideas and information/experience, and also the deepfelt, respectful support for making what choices are available. The candor is...
  13. J

    Wheelchair advice

    Thank you so much...very helpful PWC?
  14. J

    Wheelchair advice

    we have begun searching for an outside chair as my husband can only walk a short distance. He is still fine inside the home. Something easy to get in and out of car. Suggestions?
  15. J

    My husband is recently diagnosed--seconding opinion from Columbia Hospital confirming ALS

    Helpful to consider. Thank you and best wishes to you. A nurse I know explained we don't go through the stages of grief in sequence and that was helpful too.
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