Recent content by Mary2

  1. M

    Husband refusing to go to clinic anymore

    We got rid of the brackets for the Dynavox as well. We used a desk that the wheel chair legs could fit under. My PALS spent much time at the desk.
  2. M

    Husband refusing to go to clinic anymore

    My husband had an eye gaze machine which would help your husband communicate. This machine uses the eyes and infra red to pick out letters on the machine(computer). I believe phrases can be stored in the computer as well. My husband's speech was pretty good so we never used the eye gaze for...
  3. M

    Husband refusing to go to clinic anymore

    The power wheel chair is going to need a bracket to hold the ventilator. Also in your home, you will need to find a suitable table to place the ventilator on. The table needs to be lower than the bed. Does he have a hospital bed? There can be a problem with the arms of the Hoyer Lyft not going...
  4. M

    Loved one diagnosed with ALS

    Diane, Your Pals sounds like a wonderful family man. I can surely relate to how new this diagnosis is and how sad and heartbreaking the situation is. It is very difficult at first to wrap one's head and emotions around the situation that a loved one has ALS. I still haven't completely wrapped...
  5. M

    Husband refusing to go to clinic anymore

    My husband adjusted to bi-pap well. However we did try several different masks. I think this is fairly common. Just like with CPAP there are masks just for the nose or that cover the face and nose. It might be helpful if the respiratory therapist has several masks on hand for your husband to...
  6. M

    Husband refusing to go to clinic anymore

    Hi Gmathyme, Sorry to welcome you here. There are people on the Forum who will be able to lay out some ideas/options better than I am able. My husband was diagnosed at age 76 during Covid. We were able to do our clinic visits by Zoom. I don't know if the VA near you is still doing Zoom...
  7. M

    Loved one diagnosed with ALS

    Hi Diane, If I want to log out, I go in under my name in the upper right hand column. Am I right to infer that your PALS is living alone and has a caregiver in the mornings? This particular thread under Current Caregivers is limited to Caregiver comments only. The PALS thread is limited to...
  8. M

    Loved one diagnosed with ALS

    Sorry to welcome you here Diane. ALS requires adaption. What a PALS can do at one point, they won't be able to do at a point further down the road. We were able to get into a daily routine which lasted quite awhile. We had a caregiver about 4 mornings a week and the afternoons to ourselves. I...
  9. M

    Past CALS Rollcall

    The one year anniversary of the passing: I am so proud of Paul. He learned to use the eye gaze and would text messages. He stayed interested in everyone's activities and current events. He was kind to everyone. The day before his passing we watched Interstellar, The Martian, and 2001 a Space...
  10. M

    SeaGunny’s thread

    Marnes, I am sending you a PM.
  11. M

    My mom is free

    My sympathy to you on your loss. Peace to you and your family.
  12. M

    SeaGunny’s thread

    SeaGunny, I appreciate your thoughts, observations, and insights into these issues of ALS and grief. To stay timely, I have been playing some Taylor Swift music and some of her songs bring me to tears. And Nights in White Satin by The Moody Blues always puts me in a meaningful space, thinking...
  13. M

    Grieving/Depression/Anger

    Hello Sandy, I am so sorry to welcome you here. The place no one wants to be. Certainly you are welcome to post here and we will support you as best we can. There may be others in your community available to support you as well. I cry quite a bit myself. I see your sister was diagnosed in June...
  14. M

    Bulbar als and odd symptoms

    Welcome MJR. I am so sorry about your husband's diagnosis. As you probably are aware frontotemporal dementia or FTD can occur with ALS. My husband was limb onset and didn't show signs of FTD. However other caregivers here have experienced caring for a spouse with FTD. Some PALS have...
  15. M

    My father was rushed to the hospital

    Interesting the medical team didn't comment on the chest x-ray. Does the medical team say he has pneumonia? Is he doing any better. I know you and your Mom and brother are doing every thing you can to keep him comfortable. I know it is very scary. I am praying for you, your Dad and your family.
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