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    • #13409
      Dagmar Munn
      Keymaster

      Professional caregivers are often expected to accompany their pALS (person with ALS) to medical appointments. But if you are a caregiver who is a family member or friend do you do this as well? Do you feel your pALS’s medical information is a private matter and leave the room when the doctor comes in? Or do you stay and act as an advocate for you pALS along with discussing and sharing your observations?

    • #13547
      Susi Gregg
      Participant

      I accompany my husband to almost every doctor visit and definitely every ALS clinic visit at the VA.  I keep a notebook with me on clinic days and write down all his vitals, respiratory test results, comments from the PT, OT and nutritionist, and especially his neurologist.  This is the only way I can keep track of what is recommended since it is a multidisciplinary clinic, and he sees around 6-7 different professionals at every visit.  My notebook also serves as a reminder to follow up on any suggestions or plans that need to put in place before the next clinic.  Hope this helps.  God bless!

    • #13553
      Dagmar Munn
      Keymaster

      Thank you Susie for sharing this. Having a dedicated notebook to take along to medical visits is something I think all caregivers (and pALS) should do. That way, information is in one place, previous visit information can be accessed and it takes the stress out of second-guessing what was said in the exam room.

    • #13564
      Joanne
      Participant

      My husband/ caretaker attends all my medical appts. I have no voice so I prepare notes to update those seeing me on what has taken place, changes I have observed questions I have and how I’m feeling mentally since our last visit. Having my caretaker husband with me saves my energy when he can answer questions for me and the medical doctor or ALS team love the note, they save time, ensure they have covered my concerns and brings their attention to things they may not have planned on exploring. My husband and I come away with the full picture and two memories focused on take always.

    • #13565
      Dagmar Munn
      Keymaster

      Another great suggestion.. and reason to have someone with you taking and sharing notes. Thank you Joanne!

    • #13571
      Jim Gregory
      Participant

      I attend all Doctor appointments for my ALS wife. We carry a 8×11 sheet of paper (laminated) of a standard keyboard so she can correspond directly with the Doctor. She cannot talk so a pair of old glasses with a toy laser attached to one ear piece is used for her to spell what she wants to say. I answer some questions but she loves to answer to specific questions from the doctor. A little more time is used but we feel it is helpful to keep her in the loop with her doctors. We can discuss the feedback from the ALS staff when we get home.

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