Recent content by Jdeanda

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...

@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...

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 :(

My daddy took his last breath at 12:50 Dec 15,2021. Thank you all for all the continued support💙 we miss him so much

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...

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...

sorry the above message was for @rnewton60

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!

@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...

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...

I do not know when they last did blood work on him. He saw an urologist on Wednesday and his prostate was super inflamed the dr couldn't exam it. So he put him on some meds and has to keep the cath and next week will have some sort of procedure done to see what is going on. This dr was intrigued...

Yes it definitely feels like everything is related but i know its not. I had to reassure my dad also that what they think he has is BPH and its common. However we did notice that he is also looking a little yellow. We have no idea why, but we both noticed it. Just another piece to this puzzle.

We ended up taking my dad to the urgent care. They suspect its his prostate. They catheterized him and he has a huge relief. Cath is in until he can get an appt with the urologist. (which that's a whole other issue)

Question, my dad has ALS bulbar onset for about 5 months already. He’s lost tons of weight and just had a peg tube placed last Thursday. Since we started feeding through the tube 4-6 formula bottles a day he had started feeling like he had life again. We were all so happy knowing he’s getting...

Thank you! i didnt realize there are different masks. We will definitely look into that . His voice is getting really bad and im so nervous about the progression. I hold his hand and i feel it twitching all the time. We are super nervous about whether he knows that he will end up in a...