Recent content by pscheffel

  1. pscheffel

    Dad's speech getting worse

    That is such a blessing they will be staying with you. I lived 5 minutes from my parents but still felt like I wasn't there enough and I went everyday at lunch and on my way home from work. My Mom also had bulbar ALS and FTD. It's so difficult to know what and how they are thinking/feeling. Hang...
  2. pscheffel

    Feeding Tube

    I am glad she decided to go for it! I believe it gave my Mom and us relief and she was able to live more comfortably for a longer period of time. It's a hard decision, but well worth it.
  3. pscheffel

    In loving memory of my husband

    Very sorry for your loss.
  4. pscheffel

    Hello dfinch22, it was my Mom who had ALS, she stopped the Rilutek because it was so expensive...

    Hello dfinch22, it was my Mom who had ALS, she stopped the Rilutek because it was so expensive. But we were willing to pay for it, however, she was noticeably progressing while taking it and I don't think the speed of the progression changed when she stopped. So we made a family decision to...
  5. pscheffel

    Hi Kim, I am very sorry to hear about your divorce. I hope you are okay and have supportive...

    Hi Kim, I am very sorry to hear about your divorce. I hope you are okay and have supportive family and friends. I haven't been on in so long, keeping busy, but always have my Mom, this forum, and ALS on my mind. My family is doing well, kids are growing and keeping me busy. My Mom has been gone...
  6. pscheffel

    My love is gone and now my suffering begins......

    I am so sorry for your loss, time only heals.....take care.
  7. pscheffel

    What my parents taught me

    This is nice!
  8. pscheffel

    Hope you are doing good!

    Hope you are doing good!
  9. pscheffel

    Mom I miss you every day more and more

    Amy, I feel your pain in every way! It's not been quite 3 months since my Mom passed away....I miss her terribly! One day at a time is all I do. Vicki, that is an awesome quote! Patty
  10. pscheffel

    Rog has passed

    Jenn, I am so sorry to hear this. God bless you.
  11. pscheffel

    Stopped rilutek bec of progression, notice difference?

    We stopped the Rilutek, progression remained unchanged. I am so sorry for your sister and family.
  12. pscheffel

    Support group

    Angela, I tried getting my Mom to go to some functions, but she didn't want to. So I came here instead, still thankful for this group! God bless.
  13. pscheffel

    Question for Bulbarians

    Chris, my Mom had Bulbar ALS. The muscles start to atrophy (waste), in her case it was mainly in her upper body, face and arms. I think a bipap is essential for comfort. My Mom didn't want to use one, but when she developed bronchitis, she was forced. I am truly sorry you are going through this.
  14. pscheffel

    Missing my Love

    That was nice Elaine. I am sorry for your loss msdave.
  15. pscheffel

    Singing again

    I too am sorry for your loss, I pray for a cure soon.
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