Search results for query: *

  1. J

    Husband diagnosed today..

    My dad was dx in Sept 2021, he had already showed signs of bulbar onset in May. By Sept he was already losing his speech. He also didn't want to get a feeding tube or use a bipap machine because he felt super claustrophobic. We tried so hard to talk him into it but ultimately it was his choice...
  2. J

    Jdeanda's dad

    @JimInVA - Its been a struggle, my mom is 69 and they were married for 50 years. A lifetime. It is truly breaking my heart in other ways for my mom. I find some comfort going to the cemetery and having full on convos with him. He was such a good person. I feel completely lost with out him. CALS...
  3. J

    Jdeanda's dad

    Almost a month without my dad, and i still cant believe it. I know this is what he would've wanted, he didn't want us to "have" to take care of him, but my wish would be for a drug a treatment anything for ALS! What i wouldn't give to be his caretaker again :(
  4. J

    Jdeanda's dad

    My daddy took his last breath at 12:50 Dec 15,2021. Thank you all for all the continued supportđź’™ we miss him so much
  5. J

    Dad refusing to see more doctors

    Unfortunately, I don't have any good news to report. On Thursday evening my dad was severely SOB. We called the ambulance to take him in. His blood pressure was severely low also. He was put into ICU where it was found that he developed an infection that spread into his blood stream and caused...
  6. J

    Dad refusing to see more doctors

    Good Morning, my fellow caregivers. It has been one hell of a month so far and its only the 9th. We went to an ALS clinic in SA and got alot of information that was real helpful, but my dad already said he doesn't want to ever go again. That he knows what's going to happen and doesn't need...
  7. J

    exchanging experiences with bulbar onset ALS

    sorry the above message was for @rnewton60
  8. J

    exchanging experiences with bulbar onset ALS

    Hi! i just read over your message, are you still mobile? I have high hopes that my dad will stay mobile for longer than what is expected. Hope and Faith!
  9. J

    exchanging experiences with bulbar onset ALS

    @GXTrex I will def look into a hospital bed! My dad is super old school , with a flip phone and all! he never learned or wanted to text. He doesn't get on google or doesn't research anything. So technology for him is going to be a little hard. I'm hoping we have time between him losing his...
  10. J

    exchanging experiences with bulbar onset ALS

    My dad started with bulbar issues in May 2021. It was confirmed a few months later. He waited to long to get his PEG tube, because he was/is in denial. And let me tell you , it was the biggest mistake! He lost so much weight and couldn't take his meds. By the time we were able to get him in he...
Back
Top