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In defense of her docs, let me say this. Atrial fib can take a while to find. Mine was found by accident...only after I threw a fit about my heart flutters and passing out. The cardiologist did a stress test to pacify me...and I passed out on the treadmill from afib. He apologized for thinking I was a hysterical female.

As to her ALS...A PEG would make things easier for her down the road and is better inserted before its needed if its being considered.

It's a good idea to move the bedroom downstairs. You say your dad is strong, but keep in mind caring for a PAL is taxing on folks much younger, so watch him for signs of exhaustion.

Def look into clinical trials and such. Order equiptment before its needed and get her into a multi-disciplinary clinic.

70 isn't nearly as old as it was 20 years ago!

Last thought...what did they say about the plaque in her brain? Please ask the neuro about it.

Take care and ask any questions you need. We are all here for you.
 
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Hey Jamie,

I lost my mom at ALS in 2004; she was 61. When my mom was first diagnosed, she did not want a feeding tube or a ventilator. She waited until the last minute to get her feeding tube, and then it became urgent as she was choking and not able to eat hardly anything. We know without it she would have died. They only did local anesthesia because of her ALS. It went fine, but she was upset because she thought she was going to be "knocked out." She started feeling a lot better with the feeding tube.

In the end she did not get a ventilator because she did not want to live that way. She passed away about two weeks after she got her feeding tube. Everyone was very surprised. Dad said, "Don’t put faith in the doctor’s time frame. They just don’t know."

I don't know if this is right for your mom, but he also said, "I wish she would have had a dog. I think it would have been very comforting to her to have a dog.” He commented that he thought people with a terminal illness should have a dog because they would be comforted by it.

You came to the right place for answers and support.....great people here:) Best wishes you and your family! ~ Judy
 
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