Recent content by smg0012

i just wanted to reach out to my CALS family and say thank you for your support over the past months. my dad had been suffering from ALS for 7 years but i only found this forum a few months ago. my dad passed in February and I'm just bringing myself to be able to reach out now. its been...

I am my dad's caretaker and he has ALS with FTD. First let me start by saying I'm sorry for what you are going through. ALS is an awful disease and FTD is just like the icing on the cake (so to speak). I would recommend starting the paperwork for Medicare/disability as soon as possible. We...

thank you all so much! he has lost all movment in his arms and hands. we use a tervis with a long straw and try to prop it in his arm/shoulder with pillows. the problem is sometimes he cant get to the straw and if the cup gets moved (we have great "caretaker dogs" lol) then we risk spilling. He...

hello, i was hoping some one has found/made a cup holder that i can leave infront of my PALS so he can drink whenever he needs it. I cant find anything online and wanted to know if anyone else has found a solution to this problem.

we never thought of reporting his behavior because of the position he held at the hospital, i guess we felt that it would go unappreciated. But that is a good idea. maybe we will just send a letter to help people in the future! thanks :)

that is actually where he was diagnosed. after the doctor there told him he had ALS he was upset (obviously) and the doctor started to get irritated towards him and said "do you think i like telling people they are going to die. My job is really hard". he showed more compassion towards himself...

I would love any suggestions on doctors! we live in the atlanta area. where would i look for that information on the forum? But he did get released today. he responded well enough on antibiotics that they released him today. They said they've done all they can do for him, however he hasn't...

Thank you laurie! He's doing better. Now he's just really tired. It's been a long emotional day, not to mention he hasn't been eating well so he's low on energy. He's sleeping now. So soon I will be too. :) we will see what the doc says in the morning. I've talked with the RN extensively on how...

I totally agree, SMG. I DO mean to alarm you now. Most doctors and nearly all nurses have no idea how to care for a person with ALS. They always pretend to know, but they don't. You'll need to stay by your PALS side to ensure he is not falling out of a gurney or bed, or that somebody doesn't...

Laurie, you were right! It's bilateral pneumonia. They are admitting him to the hospital now for at least one night of ivs and observations. Thank you. And everything else you said is so true. That you for the insight and the knowledge to know when/how to speak up. Hopefully this is just another...

That's what I tell him. He doesn't understand that and would rather avoid the doc and not get treated for colds (etc) l. He Also has ftd so that tends to complicate things at times.

He does have a bipap and hasn't used it for the past 3 hours or so. And doesn't need it 24/7. He uses it to sleep and when he feels a little week. Right now his puls ox was 93/94 before they gave him some oxygen. Now it's95. They just did his x-rays so they haven't come back yet and the blood...

I just took my PALS to the hospital and hour ago. He has been fighting what seams to be a chest cold for about a month now. The doctors aren't saying much yet and he hasn't been to a neurologist in over 6 years (when he was 1st diagnosed). I was hoping some of you can give me guidance or hope...

My dad uses a sleep number bed because the hospital bed was too depressing.But we have managed to use the hoyer without the hospital bed. i don't know how the va clinic will let you do things though.

i am new to the forum but all of your experience as a CALS give me encouragement to get through everyday. thank you all!