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Zina Perry

Jan 5, 2008
Loved one DX

Things are not going well for us! Mike, my husband was diagnosed in Dec. 2007. His onset is respiratory. The last 2 weeks, his oxygen levels are dropping to about 88. We have started him on oxygen and he uses the bipap all the time. He quit eating about 7 days ago and is living on Resource 2.0. He says he isn't hungry and gets angry if I mention food. I have tried cooking things that I know that he likes and that the aroma would increase his appetite. I have noticed that he is starting to have secretions on each side of his mouth and his voice is getting faint. The respiratory doctor told me there is nothing they can do. He has lost 6 pounds in 2 weeks. What do I need to do to help him and make him comfortable. It is getting difficult for him to shower and shave, but I keep getting the shower stool and encouraging him to get in the shower. He used to love showers so much and took 2 a day. He does not want to know the symptoms that go with ALS. I have notice that he also has twitching in his legs, but he said he could not feel it. Is this common? I enjoy reading all of your posts and learning what I can, but I know that ALS does not have a consistant pattern. All of you are in my prayers daily.

God Bless,
Zina Akin Perry
Rusk, Texas:cry:
Dear Zina

I am a caregiver for my husband who has PMA classification of ALS. His arms are useless, diaphram weak and breathing getting to be difficult. He is on Bipap at night but really needs when resting during the day. He too, has no appetite. He lost 15 pds in 3 months. ALS clinic was very concerned and told me to have him DRINK HIS CALORIES. I go to BJ or SAMS and get a case of ENSURE PLUS a week. When he eats little, I put 2 Ensure Plus in blender with a cut up banana and that is 800 calories.
I have been able to put 3.5 pds back on him this month doing shakes.

I know what you are going through. I shower, shave, dress, and feed my husband. Mine does get depressed but will not admit it. He too would take 2 showers a day when he was well and was an exercise nut. Now he is down to 165 lbs. from 205.

If you ever want to email me, just to talk, you may send me a private email. I would be glad to answer any personal questions or just to girl chat.

My husband is 58 years young and was diagnosed Nov. 07 but symptoms started May 06.

God bless you,

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