Status
Not open for further replies.
Thanks for the info. I will check into that. There is so much to figure out. I appreciate EVERYONE's input!
 
Thanks hanginon. Your post was very helpful. I will continue to read, read, read. And I know I am going to need all of you at some point. I just hope I can get my mom on here too. I'm working on getting other family members ready for this horrible detour we all have to make. Hugs to all.
 
Notme - or anyone else........... I know my mom hasn't done the SSDI paperwork. She is still working and has insurance. Should she also do the SSDI? I have no idea. There is still a lot that we have to do and look into. VA help, equipment that will be needed at some point. I think that after we get this visit under our belt on Thursday she'll start helping me help her. Right now she is still in denial and I think she really expects UCLA to tell her something other than ALS although from what I got from her neurologist, it can't be anything else. Ugh, this is so overwhelming. Thanks all. I'll be back later that's for sure.
 
Good luck at UCLA. My ALS Clinic has been so supportive. I love the "one stop shopping", seeing all the disciplines in one appointment. We drive 2 hours to Clinic and it does make for a very long day, but well worth it. We take along snacks and drinks and one of the local vendors provides lunch for the patients and staff in the conference room at the clinic. They will have the info on whatever Clinical Trials your Mom may be eligible for if the diagnosis is confirmed. I'm able to use e-mail to contact them for any questions or concerns that crop up between appointments and they have been very responsive. They keep my local GP informed and up to date on my progress and provide him with copies of any labs or tests that they perform. He in turn, does the same. I hope that your experience will be a positive one.
 
Ask everyone for their email address. You will most probalby need that
Good luck
 
Status
Not open for further replies.
Back
Top