Recent content by valoree

Mom snuck away silently while holding my hand. I don't know exactly how long she'd been gone when we finally noticed the bipap was the only thing breathing. No heart beat. Her face was immediately unrecognizable. She was just gone from this world. Gone from this pain. 51 years is just not long...

We are back at the hospital. Mom is septic from a severe UTI and mild aspiration pneumonia. The morphine she's been taking backed her up so we tried magcite to force a BM but she vomited instead and hasn't been right since. Less than 24 hours later and we are in the PCU again. Her EKG shows that...

The House and vicodin thing was to make you laugh, but I mean it. I feel like, if I was a doctor looking at this woman who is so sick and missing key symptoms of ALS and showing various other systemic issues that I'd want to poke around a bit and solve the puzzle. Even if the solution is that...

Is this a pm? I'm not sure how to pm someone on here.

When the embolisms happened mom hadn't been sedentary/bedridden for more than a week and a half, the doctors were skeptical that a week and a half would have been enough time to form such large clots. She showed thickness in her blood and has been on Warfarin since the embolisms happened and has...

My mother is only 51, was an avid walker and a generally healthy person until she turned 50. She began with coldness in her fingers which was diagnosed as Reynaud's disorder, no big deal. Then she began to feel fatigue, trouble swallowing, trouble moving parts of her hands, thickening of the...

Hi Rob, My mom is 51 and is in basically the same place as your wife. I am 30 and can't even imagine facing my own mortality at this point. I'm so sorry. Mom was told she is at 22% lung capacity and she's opting out of a vent so we're looking at 6 months. She is on her biPAP 24/7 and she did...

Yeah, I wish everyone had plenty of these. Forget "Make a Muscle," make a neuron and the muscles will take care of themselves.

I just wanted to share the motor neuron tattoo I got over the New Year holiday. A healthy neuron of course. I wish my mom had a few more of these healthy neurons. :sad:

I could be wrong, but the MDA has all kinds of resources that might help you get out on your own and into a happier place/home. It's worth trying and the MDA is such a great place to start.

My mom was denied this trial because she's been on sterroids in the last 12 weeks. I was also told that phase 3 Dex trial enrollment is now closed because they are full. Mom is on blood thinners for a blood clot so I'm kinda thinking she'll be ineligible for most studies and that's rough news...

Anyone visiting my page: I am trying to raise funds to help get mom to and from Portland for the NP-001 trial and maybe to UMass to see Dr. Brown about stem cell research. I have a giveforward page and will be rewarding any and all donors with an original painting and donors will also receive a...

any idea how to get more info on the trials?

Anyone doing this trial in Oregon/Washington? Anyone met Dr Goslin?

My mom's diagnosis isn't definite so I'm wondering if her complete lack of twitches is abnormal for someone with ALS. Is twitching a pretty universal symptom or is it hit and miss?