Recent content by BlueK58

Thank you for your kind words! I am slowly starting to realize that it is all real. I have days where I feel so exhausted, sick or irritated for no reason. Im trying to live "normal" life but I dn't remember what normal is. Your msg was so kind and selfless despite your own mourning and that...

I re-read and old message you sent me. I live in Mass and we have barely anything for ALS. We found a traveling support group that met once every couple months. When my father and I somehow managed to make it there were 2 people besides us there. I made a new friend and I found out that her...

Hi! It's been a while...Just wondering how you are doing.

Took care of my mom for 5 years. Full time for the last 2...She passed away about a month ago. I was there, I watched her go and thank god it was peaceful. Throughout it all I NEVER cried. I got choked up and teary eyed, had a few brief tears but never had a good real release type cry. Today...

Thank you so much everyone for all of your kind words! My mom was amazing. I just hope some Cals who are having a tough day read this and realize how important they are and how much they are appreciated by their Pals--even if they are not able to verbalize it or show their emotions know they...

Hey, I am so sorry to hear that. I had No idea!! I hope she is at peace and doing all the things she loved to do. I also hope you feel some sort of relief knowing she isn't struggling. I never really know what to say, I just know I can't tell you what you should be thinking or feeling about it...

Hello! It has been a really long time. Just wanted to let you know that last night my mom passed. Happy she is comfortable and peaceful. Thank you for always giving genuine support and responding to my posts. Hope all is well with you and your wife. Keep your head up like you always do and...

Hello, was posting on here a few months back but stopped. Last night my mom passed. Had such a long drawn out battle with ALS spanning over almost 5 years. Her breathing was shallow for a few days and last night she was not able to catch her breath again. We didn't see it coming this soon. She...

Posted a few times about frustration and problems and just wanted to say something nice Have a nurse and aid from hospice who come 2x a week to the house. Probably 2 of the kindest considerate people! Always have a great sense of humor and treat my mother and family with respect and courtesy...

:( I went through the same thing and still am with my mom...It's like they make up random requests just to make sure you are still up and moving. Idk if she has FTD but after reading posts with it mentioned it sounds SO MUCH like her. I need to look into it because i seriously think she has it...

You sound like Superwoman! Although even she needs a break before she loses it. I don't know anything about FTD like other's have mentioned so i will look it up. It sounds like part of it is that your stepfather isn't ready accept whats happening and let go of some things (like the soda and...

Thanks everyone for sharing your experiences! again, not trying to knock it just wanted someone else to be able to read this and help them make a decision! Xanex is working OK, klonipin was also a no-go with my mom. Think she is sensitive to these types of meds. We need something better for...

That is so true!! I can't really remember my mom's voice either...I found my old phone with a bunch of videos and pictures on it. Was weird to hear her talking and see her walking. Can't beat yourself up over it. So many things change at such a rapid pace that it's almost like your mind cannot...

Hello there! My mom has been living with ALS for about 4 years now. At home and on hospice. Was recommended that she try Ativan because she has EXTREME anxiety. Just figured I'd share our experience with it...Previously she was taking xanax which was working well. Nurse suggested Ativan with the...

Hey steve! You are right, we are all constantly adjusting and kind of rolling with the punches when it comes to this disease. It does make you realize how important and special the here and now is! Spent 3 years changing our routines and adjusting with mom so I completely understand what you...