B's Mommy

Anyways it was really great hearing from you. My email is [email protected] and I am also on Facebook under Sarah Greathouse. I am living in Hawaii now and have since married. I would love to get a friend request from you and Darcy if you have a facebook account or email.

I'm elated to know that Dr. Galbreath is Darcey's doctor. I couldn't let you leave without telling you about him. Please tell him I said hello and thank you so much. I never got the chance to tell him. Both him and his clinic were the only place my mom felt comfortable. As you know it's hard to find quality doctors when dealing with ALS. She always looked forward to seeing him and his team. He did so much for her. When she was hospitalized for pneumonia and had to have a PEG tube placed he came in on a Saturday and took over the entire plan when they planned to place it through her throat since she was a DNR and he made them do it through her stomache to eliminate any issues with potential end of life if she had complications. He took that Dr. out into the hallway and had words with him. Not everyone would do that. He truly cares for his patients.

Jim, so glad to hear back from you and Darcey. Please tell Darcey I said hello! Glad to hear that you guys are still getting out and enjoying life. Also glad that the wheelchair still gives her peace of mind even of it has not been needed. I think the ALS loaner closet would be a great home for it one day. My mom's chair was purchased new through Medicaid which many people don't qualify for so I hope it will offer someone mobility that wouldn't otherwise be able to receive it one day. I know she would be happy knowing that it stayed within the ALS community so thank you for that.

[Part 2] It is now January... and last night we went to see blues/rock guitarist Joe Bonamassa perform at the Sandler Center in VA Beach. Yep... she's still got some life left to live and we're doing all we can to make every day as good as it can be. Darcey also says "hi" and wanted you to know that your reaching back out to us was met with broad smiles and appreciation for the thought. If you ever need our email address, let me know here and I'll forward it through our awesome forum moderators. -Jim & Darcey-

Sarah - So wonderful to hear from you! I do understand the need for separation as you seek to find your own balance. And you are right... those who are here do understand the dilemma of the unexpected reminders. Your Mom's wheelchair has not yet been necessary but has provided great peace of mind. Darcey wants both PWCs to go to the ALS Loaner Closet when she no longer needs them. Shortly after you headed to Hawaii, we visited a local Hampton neurologist. ALS was not his specialty and said if he had a family member with ALS he'd have them see Dr. Galbreath in Virginia Beach. We were both thrilled with that recommendation after your comments about how he cared for your Mom. And you were absolutely right - I don't think we could find a better doctor to guide us on this journey. Andy Galbreath cautioned Darcey in March that he believed that she was within 6 months of life's end.

Hello everyone, I am new to this forum and my mom has ALS. Early last year (2011) she began slurring and having trouble going up steps and falling down. That was last August and by December she could no longer walk. She is in a wheelchair now and is losing her speech and having some trouble eating. I just want to be able to bring some happiness into our lives while also having to deal with ALS.