Recent content by TeamDom

Sorry it's been a while (it was a rough winter) everyone but I wanted you to know that I very much appreciate your supportive and helpful messages! My brother ended up visiting for the holiday so I was very happy for my father. I've learned a lot through grief counseling. Instead of feeling...

Sending you a private message. :)

Thank you so much Ms. Pie, Laurel, and Elaine! How nice of you to take the time to write to me, share your stories, and offer advice! I'm so touched by so many members of this forum. You're so right Elaine! All we ask of him is to contact him in some way on a regular basis. We don't ask him to...

My father is 60 years young. He was diagnosed in June 2011. He's now at a point where he has 24/7 care because he can't speak, eat, swallow, use his arms, hands, etc. He can still stand and transfer but can only take 2 steps. My brother, 22, went to college (about 2 hours away) this semester...

I'm so sorry to you all for your losses. My thoughts are with you. You're not alone. Enrique, You're so strong, mature, and selfless at such a young age to offer your word of support to those suffering from an awful disease that took your father from you at such a young age. You're father must...

Yes! Thank you again! This is such a complicated disease so sharing and learning on this forum are so helpful. I read some of your Happiness Now thread. You have an incredible spirit!

Thank you Sequoia! I'm the one from Jodi's FB page that was looking for a forum like this and you recommended it to me. :)

Hi Skipper, Thank you for your message and friend request. I appreciate it! My father, 60 yrs, has ALS as well. It's heart wrenching. He lives 10 minutes from me and my family in an independent living facility. We've hired 24/7 private care. He doesn't have a significant other and my siblings...

Notme: I couldn't agree more with your statement: "The medical community is very uneducated at large about ALS, as are the people that work in govt. offices." I'm finding it very difficult to find nursing assistants that have any experience with ALS. Now we have to pay triple the amount to get...

Thank you to Mary Pat as well! All good ideas! I'll keep you posted.

You can also look into EZ Call by medlabsinc.com for an alarm plate that can be pressed with your head or feet.

Thank you notme! Unfortunately, he needs the mask because on top of ALS, he has severe sleep apnea. That's a good idea though - wearing it when he's watching TV. Any ideas how he can make a signal to his nurse when he wants to take it off?

Thank you Deb! I'll talk to his ALS team about the Trilogy at his clinic appointment next week. Do you happen to use Cough Assist? My dad is resistant to using it as it creates uncomfortable pressure in his ears. He says it feels as though his ears will explode. I've noticed that you reply to...

A cure but all I ask for at this point for my father is for him to be comfortable which never seems to be the case.

I understand your situation. My father's girlfriend of 10 years kicked him out because she couldn't deal so my sister had to take family medical leave and live with him in a handicap accessible hotel room for 2 months! (My house isn't accessible either.) Thankfully, he has the monetary resources...