Recent content by pastor

Yesterday at 10:30am my mom took her last breath and put on her running shoes and danced all over heaven. Her passing was peaceful and she was surrounded by love. She was my best buddy. I am sure gonna miss he. I dont feel like she lost a battle. Rather i believe she passed a test and has now...

Affected one of the components of the gel is Ativan , I'm sure that's probably what is helping. She does have very clear advanced directive and a POA in place. He dr actually asked today if she wanted to die at home or in a hospital. We want to be sure to respect her wishes, all of them.

She does have a suction machine which has been helping some for now

Anyone ever have ABHR gel prescribed for there PALS? We recently started applying it to my moms wrists and it seems to really help with the anxiety. She refused medication for the anxiety but she thinks the gel is something else. Anxiety is a beast! We had to make an er trip this weekend...

No she is not using a bipap. She refuses any device assistance. Which is so sad to us, because she is really struggling. She is bulbar onset. Although very frail she still is able to walk. But has limited arm movement and can not speak. Fed with feeding tube. She is 73 so I don't think it's...

Good evening Do any of the pals experience hot spells. It seems my mom is going back and forth between hot spells and cold spells. She has trouble with breathing and she always feels hot when the rest of us feel the room is cool and comfortable. Any suggestions anyone else experience the same?

I do think so, it seems at high stress times everything seems worse. I started taking Prozac a few weeks ago with the hoping that would help. The stress is enormous.

We still don't know our gene type. My mm was tested this summer through a research project at UPMC but I called Wednesday and still no answer Nikki how are you coming along? I'm amazed that in the midst of your own struggle you still reach out to help others

Almost a year ago I first posted when. Began to have twitching in my arm, foot and leg only on the left. At that time there was also some stabbing pain included. Being from a FALS family...my mom being the 3rd diagnosed. I instantly thought I have als. I seen a neuro at that time. And had Meg...

We are in Pittsburgh. I am definitely going to insist on the bipap during the procedure and hopefully the reclined position.

Hello everyone. Just looking for some input. My mom ha bulbar ALS and can no longer eat by mouth so she is scheduled for a peg tube next Thursday. However, she is getting it against her ALS specialist advice. Her FVC is 45 and she is unable to breath while laying on her back. But she is so...

Thank you Hollister! My mom mentioned that she would like to try mucinex but I was concerned that it brings mucous up and she doesnt have the ability to cough it up. I will definitely check with her dr though.

Thanks Ladies. Going to call her dr about those

Hoping someone may have some pointers for my mom. She has bulbar onset that his seemed to ramp up over the last couple of weeks. She is experiencing excessive slobbering. It gets worse when she tries to speak it spews from her mother. The specialist prescribed some drop (can't remember name)...

My mom uses a boogie board. We bought her an ipad but she's not very tech saavy. We are will be talking to her neuro about a peg tube after her next PFT. She still able to eat some things but it takes so much energy. More ends up down her blouse than in her mouth. She refuses to eat puree. But i...