Recent content by cbiedron

  1. cbiedron

    New to ALS and this forum

    Hi Lindy, I’m so sorry for what you are going through. I made smoothies for my husband before he got his feeding tube with a very high calorie protein powder and added healthy organic things like almond butter, coconut oil, kale, pomegranate juice, frozen blueberries, Greek yogurt, sometimes...
  2. cbiedron

    Grieving

    I’m so sorry Annie. It has been three and a half weeks for me now. Taking it hour by hour sometimes. It’s okay to feel all kinds of feelings. You were an excellent caregiver and he is at peace. Hugs.
  3. cbiedron

    Sad

    I am so sorry, Arcg. I just lost my husband on Friday. He also had FTD and was unable to communicate. The whole ordeal was so exhausting physically and emotionally, with every week bringing new challenges. But our ending was so very peaceful. Now that he is gone I can see the big picture and...
  4. cbiedron

    Mark W. Biedron, former NJ State Board of Education President

    I lost my sweet husband and best friend Mark Biedron on Friday. Mark was diagnosed in April of this year. The battle was rough but the end was so peaceful, and I was incredibly honored to be the one to care for him and hold his hand from the very beginning to his very last moment. Mark was...
  5. cbiedron

    Thoughts on how my PALS Is feeling?

    Thank you all so much. Does anyone have suggestions on how to make him comfortable in bed? He sleeps with a light blanket, which sometimes he manages to off in the middle of the night. So then I’m afraid he is cold. Is it better to put socks on him? How about arm and hand positioning? At this...
  6. cbiedron

    Thoughts on how my PALS Is feeling?

    Thank you both! He has been unable to blink or wink voluntarily for a while. He does thumbs up/down but struggles with that sometimes too. I will try your suggestions, truly appreciate any and all feedback here!
  7. cbiedron

    Thoughts on how my PALS Is feeling?

    Thank you everyone for all your valuable advice here. My husband was diagnosed in March, bulbar onset, and now needs me to do everything for him. He has a feeding tube, trilogy, cough assist, suction, hospital bed and lift. His FTD prevented him from learning how to use a communication device...
  8. cbiedron

    Best manual wheelchair for grass/gravel?

    Greetings, I’d like to purchase a wheelchair with rugged wheels to push my sweetheart outdoors in the grass or on a gravel path. Does anyone have a suggestion? Thank you!
  9. cbiedron

    Altitude, travel suggestions?

    Thank you Steve! I appreciate this. It is our favorite place and before he was diagnosed he had no trouble with altitude. He is worried now and wants to postpone the trip.
  10. cbiedron

    Altitude, travel suggestions?

    Greetings everyone. My sweet husband and I are flying to Denver for a week. Prior to his diagnosis, we purchased a piece of property at 9,000 feet and began building our dream retirement house there. It is our favorite place and I know the trip will be challenging but I think it will be good...
  11. cbiedron

    Husband was just diagnosed...I'm so worried and not sure how to help.

    Thank you Al, I appreciate this :)
  12. cbiedron

    Husband was just diagnosed...I'm so worried and not sure how to help.

    My husband was diagnosed on Monday and getting a second opinion next week. All his symptoms point to bulbar onset (slurred speech, difficulty swallowing, coughing all the time). Sometimes he will cough for a long time and I'm afraid he cannot breathe or will choke on food. I'm terrified. Is...
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