ALS

[lorif]

My dad was diagnosed in September of last year. He was trying to put dishes up in the cabinet and could not raise his arms. It has progressed in this short time to almost no use of his arms and hand, weak legs and severe fatique. This is such a horrible disease. It is so hard to watch him go through this and dwindle away. He was perfectly healthy 10 months ago.

If anyone knows, he has had two episodes of waking up in the middle of the night and having trouble breathing. After about 30 minutes, he recovers. Is this the ALS affecting his breathing? Or is that a more gradual onset.

[lilclar]

My mother had ALS. She began falling down first but the respiratory didn't take long. She went into respiratory failure within a month and a half of being diagnosed. Because this was in 1992 the gene wasn't discovered and other research was very little. So she chose the ventilator. I regret to tell you she passed away, but she passed in 2004. She lived for 12 years on a ventilator. It was a decision she wouldn't make again, she would spell to us with her eyes. She was 61. So with knowing your father has ALS things happen differently with everyone, but my mom's respiratory muscles weakened quickly after diagnosis. BTW, she was the first in a study group on Rilutek before the FDA approval. I believe this did help to keep her with us for 12 years besides the vent.