Search results

Hi folks. My beloved husband, Roger, lost his battle with ALS on May 10th. He was cremated on May 14th, which was the ONE YEAR anniversary of receiving the diagnosis. This disease is just about the worst thing I can imagine. And I'm still in a bit of disbelief that he's gone. I'm...

I second the comments about pain. My husband was the dude who never took medication of any kind--high pain tolerance. But the surgery brought him to his knees. Definitely stay on top of the pain and take meds! Also, my husband ended up with a terrible infection that the doctors insisted was...

Yes, this whole push for mindfulness doesn't always apply to CALS. People don't understand about staying in the moment or being present or being mindful when you are doing the back-breaking work and heart shattering grief as a caregiver to someone with ALS. My "moments" are painful reminders...

Hi everyone. Life has been so crazy that I've only been able to scan the posts. I have been educated, inspired, and comforted by many of your posts. But I have a few moments of quiet and decided to write. Mostly just random thoughts and reflections. My husband was diagnosed on May 14, 2020...

Thanks, Jim and lgelb. And Jim, your offer is so incredibly helpful and generous. We do already have this exact sling. Along with everything else, my husband is terribly stiff and very weak, so I struggle to move him, bending forward at the waist, even from a a fully upright sitting...

Hi everyone. I am looking for advice on what sort of gadget to use for getting the hoyer sling behind my husband's back when he's in bed. (I searched the forum, but I may not be using correct search terms.) My husband is now in hospice and this cruel disease is progressing so fast. (He was...

Wow, you guys. Thank you so much to all of you for the thoughtful advice and touching stories. This is SO helpful! With all this guidance, I feel like we can now forge ahead. And just hearing stories makes helps me understand that we will get through this, that I can take the best care...

Hello everyone. My husband was diagnosed with ALS in May, 2020. The progression is fast. His SVC test result dropped to 40% (as of 12/11/20) from 72% in September, 2020. (We were doing screening for admission into an experimental drug trial, but the screening was halted due to the low...

Thank you Laurie and Al! Yes, it is all very overwhelming. We lived in Minneapolis, MN until moving to Tucson in October. My husband received the first preliminary diagnosis in April at Noran Clinic and then a second opinion/confirmation in May from Dr. Manousakis at the U of MN (because of...

Hello everyone. I just found this forum and it's a relief to see so many of you out there. But I am sorry there are so many of us out there. My husband was diagnosed with ALS in May, 2020 at age 61. He ran a marathon in October, 2019 and another in December, 2019. Watching the steady march...