Recent content by em9988

After 3 and a half long years of battling ALS where all she had left was a little bit of swallowing and breathing, my mom passed away at home with hospice care. We actually came back from the ER with a case of pneumonia earlier in january and she decided it was time to go soon and that in about...

Hi Fellow CALS and PALS, i have a question, my mom has progress to the point where she can barely mutter words and her hands are full paralyzed and she has very limited and weak neck movement. I'm trying to get something that can track her eye movement and type in TTS<, unfortunately, this TTS...

<quoted text removed> Although my mom hasn't had it as long as you have and we havent had to deal with the illness to your familys extent, my mom has progressed really quickly from a drop foot last summer to pretty much arms and legs are now 100% gone and now starting to slur her words as well...

its getting worst, she can barely stay asleep for 30 mins at a time now. if shes awake she can actually stay in the same position and spot for hours and be fine but if she falls asleep for even 30 mins she'll wake up in immense pain all over groaning, she describes it as if there's knives...

Why does the atrophying mostly bother them at night and not during the day? is there anything my mom can take to help this nerve irritation? me and my dad are literally burning our candles from both ends at this rate

is there a reason for the pain? is there anything else we can do during the day to minimize it at night?

what is this overlay? we are currently using that one, is there alternatives?

Usually starting on fully flat back then with bent legs then sides and constant readjustments side too side and sometimes she prefers legs crossed left over right then right over left

it's definitely not the temperature, we don't even have the AC on and its summer here. we do the motion massages before bed and we got that alternating pressure mattress along with the hospital bed, but nothing seems to work, we're all at our wit's end, her legs just keep hurting and bothering...

I also realize something, during the day she can lie down and be fine but at night at the same spot and similar positions but her legs would hurt or both her a lot, any one know the reason for this

yeah we have the boots but she says she cant sleep with them on her feet

shes still ok with lying flat or on side so that ok for now but i will definitely start looking into the adjustable bed. Does the vibrating bed really help? lack of space is definitely an issue, since we just hit the one year mark both my parents are still in the mindset of trying to keep as...

I will continue to try to convince her, but i think shes still in that stage where she wants some normalcy. she seems to be ok before she sleeps where we massage her and get her in a specific position but if she falls asleep, usually after an hour or so, her legs would just be immensely...

she still refuses a hospital bed, but I've purchased a bunch of foam pillows that can prop her body at like a 45 degree angle as well as add support under the knees she has heel protectors but she says its too uncomfortable to sleep in i guess it also doesnt help that shes lost alot of muscle...

is she supposed to wear the boot while she sleeps? we have gotten a setup where she sleeps semi-upright, with her legs angled but her legs wake her up with pain regardless