Recent content by MamaSara6

Christina---I'm so sorry about your dad. It is so hard to deal with fast progression! Obviously, ALS sucks all the way around, but it is really difficult when the PALs, CALs, and family members don't have any time to adjust to each change. With my mom, she never seemed to have more than 3...

Until you get the bipap, prop him up. Getting a hospital bed made a big difference with mom and we could easily adjust it depending on what she was doing. The neurologist told us when she was first diagnosed that it was normal for breathing to be 20% lower when lying flat than when sitting...

Sorry about that, Al. His blog has gotten kind of clogged up with ads to help pay for it. I totally understand, but the post on "statin disaster" is worth reading if they're having problems and care to do the search.

I believe from my non-ALS-related reading that statins can cause all kinds of muscle weakness and cramping, primarily because they deplete CoQ10, which depletes naturally with age. Anyone on a statin MUST be on CoQ10 according to Dr. Mike Eades of proteinpower.com. Of course, whether or not...

Hi, WeidemannB! I grew up in Reston and my inlaws still live there. I was the adult child several states away from Mom and my sister who was her CALS. Mom went to live with her when she was diagnosed. My sister is single and has a college-aged daughter. It was so hard on them both. When I...

I'm so sorry about your mom. I think any way you grieve is "normal"----I guess there are different stages everyone has to go through, but we all do it differently. I was the one who had the hardest time right after my mom died---a lot of bad days, not being loving enough with my own family...

I started to say that my mom had the Gastoscopy, but now I think she was just intubated. I honestly can't remember, but she did have a very sore throat for several days from whatever they put down her throat. The procedure, done by a GI, took much longer than the 15 mins. they had said it...

My mom hated yawning because her muscles were too weak and she couldn't control the closing of her mouth, so her jaw just snapped shut and hurt. Maybe that's what is happening. I'm sorry; it's so hard to watch them go through these things. So many little things that we take so much for granted.

Donna, the book you're thinking of is "Tales from the Bed." I can't remember her name, now, but her foundation got lots of celebrities involved including Ben Stiller. I didn't know it was a movie. Heck, I didn't know "Tuesdays w/ Morrie" was a movie, either. Okay, her name is Jenifer Estess...

I'm not hugely experienced in this area myself, but I did discover when Mom was in the hospital for her PEG that the staff is just clueless when it comes to ALS patients. We refused to leave her alone because they couldn't comprehend the fact that she was essentially paralyzed, especially when...

Sam, you're very sweet. My mom passed last August. I am several states away from my sister's home in MO, so I only visited every 6 weeks or so, but I went to a couple of PT sessions with her. It was hard on her, and maybe too late, but it made her feel like she was doing something positive...

Olly, my mom needed everything blended up for her. My sister did a great job of keeping her fed. She enjoyed chili, and chicken fingers blended up with lots of gravy, baked potatoes w/ barbecue. She also enjoyed eating all the soft, yummy things that she'd been trying to avoid for years to...

My mom's feet curled inward, especially after she could no longer walk. Fairly late in the game she started seeing a physical therapist to help with her frozen shoulder and her feet. He taught my sister how to do the foot exercises to keep her feet as straight as possible. That was important...

My mother sounded like your mom, but she did eventually opt for the feeding tube. I was very much opposed to her starving herself to death, and, granted, every situation and progression is different, but I can't say now that it did much good to get the tube. The only real benefit was the...

My mom was in much more pain than we expected after her PEG was inserted. 9-10 on the pain scale. That lasted for a couple of days and they kept giving her morphine, but we quickly realized that she would never get out of the hosp. on the morphine, so she stopped it. However, she was also...