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daughter01

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Joined
Oct 31, 2009
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17
Reason
Loved one DX
Country
US
State
PA
City
Harrisburg
Tomorrow we take my Mom to the ALS specialist at Hershey Medical Center. Thank goodness we have this resource so close! She was diagnosed as ALS by one neurologist but the DR. wants us to get a second opinion. I have read a lot of your posts. (Many hours scouring through your thoughts!). I have a list of things I want to talk about, but I thought it would be good to hear from anyone questions that I should ask. Here are some of the things I am working on:

-peg tube (when to consider this), she has trouble eating now
-assistance devices (bathroom, sitting, standing,hospital bed....)
-suction thing for saliva
-prescription for medicare for bathroom seat, electric wheelchair
-nursing care for future needs
-Slow loss of ability to make decisions, can we try to make some now as far as her desire for the trach and other invasive things.
-Help for my Dad this is so lovingly and heroically taking care of her!

Anything else? I think she has had this disease for at least one year, maybe two and seems to be progressing very quickly in the last couple months.
 
daughter01, if she is having trouble eating the time for a peg is now. The only other suggestion I can add is for some kind of communication device if she doesn't have one already. Good luck with the appointment.
 
Daughter, that is were I go also. I really like the Doctor. I would be glad to help you with any questions you have. The ALS assn is a great chapter, they offer so many good helpful services. The MDA will also help your mom with services. Write back, I wii be glad to help out anyway I can.
 
Well, the obvious question I would be asking first is, "Does my mother have ALS?" After all, the main reason you are going there is for a second opinion.

I'm sure they will do the usual round of tests to confirm or deny but if they can, at the end of the day, I'd get them to answer that question as soon as they are ready.

Sorry for being obvious...

Zaphoon
 
Thanks. Her Doctor was great. We had our apt. this morning and then the needle test in the afternoon. He has confirmed the diagnosis and is getting her plugged into resources. She will get her Peg on Monday. While she is in the hospital they will take baseline breathing tests and swallowing tests. We are encouraged and relieved to finally have a diagnosis (after a year of searching and tests) and a direction to go. I know I will be on this site often. Hopefully for encouragement and to encourage....to learn and to share....Glad you all are out there. It has helped during these last couple weeks!
 
I am sorry the diagnosis came to ALS after all. It seems like things are moving forward for your mom, now, though.

You are right. It is good to have definition on things you are trying to face.

Zaphoon
 
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