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leegardens

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CALS
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03/2008
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US
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Georgia
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Atlanta
Jay was diagnosed with bulbar on 1/3 2008. Got his bi-pap when Emory confirmed diagnosed on March 18.

My hubby had pneumonia before his PEG surgery on 8/22/08. Jay has difficulty speaking(more than usual) and at this point it seems to be because of his breathing problems so we went back for a follow up xray last Thursday with his internist. The doc says Jay's left hemi-diaphragm does not move. I emailed our nurse at Emory and spoke to Dr. Glass. I was told this is very bad news and to go ahead and contact hospice. They tell me his ALS is very fast moving and to come in for another breathing test on Monday, 9/15.

What does this mean? It sounds like some sort of respiratory failure. It was recommended that Jay start using his bi-pap during the day also.

He is recovering nicely from the PEG surgery although he has to get a liquid antacid injected into his tube 30 minutes before his Jevity. I am getting the hang of being organized for the feeding and it is much easier on him than using up all his energy to eat a meal.

I can see him declining rapidly. We had two friends come visit plus Jay's sister. Everyone cried when they said goodbye to Jay. He has deteriorated so much so quickly. I was shocked the first time someone did that but I am getting used to it now. I have the feeling that he is not long for this earth. Our son is thinking of taking this semester off from law school to spend time with his father and our daughter tells me she is sad all the time.
First ALS, then ALS with dementia, then PEG surgery. I thought the PEG was going to give us more time.

I told the old battle-axe, my MIL, about her son a few weeks ago. After I told her she wanted us to put in a pool because it helped FDR so it would help Jay. She got mad at me when I said no that is not what we need. Last week she was going to come with my father in law who has dementia and is incontinent and her driver- she has macular degeneration. Then she was going to dump Jay's dad on me and go back home with the driver and leave him behind for a couple of weeks. I told her no way, she was welcome to come and I thought it would be a good idea for her come; but everyone who came together had to leave together. So she hung up on me since I wouldn't do what she wanted. Now she wants me to take Jay up to NYC for another diagnosis. Now my PALS thinks he can go to NYC and a doctor there will tell him he has something else. So today I lost it with her and told her we've already had three doctors tell us Jay has ALS and there is no mistake that this is what he has and people die from this disease because there is no cure. I told her Jay is going to die.

You just cannot imagine what it is like to go through ALS with someone who has dementia. It makes everything ten times as hard. He is still in the denial stage. He tells me his health problems are psychosomatic and here I am still trying to get him to understand that he has ALS. He wanted to go to a faith healer to cure his ALS because he thought G-d would listen to a faith healer. Everytime we drive past a Baptist church he wants me to stop so he could go in. We're Jewish and his father is a Rabbi. He thinks G-d is not listening to our family because he has ALS. My husband has always been a man of deep faith and I hate to see him turn away from G-d at a time like this. He tells everyone our son hates G-d now.

He won't follow the medical orders on what we need to be doing. Everything I do is to help him and he doesn't trust me that I have his best interests at heart. I told him his mantra should be "I trust my wife" since I am looking out for him all the time. We got married when I was 20 and he was 21. I figured we'd be married for 60 years if I didn't kill him first.

Anyway, sorry to go off on a long rant here. It's been very stressful with the PEG and everything else. I don't know what I'd do without y'all. I pray for all of us everyday. So I guess back to my question- does anyone know what paralysis of the left hemidiaphragm.
means?

Thanks, Lee
 

lydia

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Lee,

I have been thinking of you all night since reading about your husband Jay. This development sounds so awful, I am so sorry that you are going through this. It is too bad about your MIL; your family needs so much support right now and her behavior doesn't help...but she must be suffering so much as well. I think you handled her proposed visit perfectly; what poise in a difficult time.

I don't know how hemidiaphragm paralysis relates to ALS but am sure you will hear from others soon. My thoughts are with you,

Lydia
 

brooksea

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Joined
Sep 27, 2006
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HM
Lee,

I'm so very sorry for you and your husband. Dr. Glass and Nicole and everyone at Emory are so very wonderful!

I can only give you this link about the diaphragm:

http://www.emedicine.com/Med/topic554.htm

You are very strong to stand up to your husband's family and I hope I can pull from your strength...

Lee, I am thinking of you and wish you well...
 

lydia

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Messages
677
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US
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buffalo
update on Jay?

Hello Lee,

I thought your husband's breathing test was today....how is he doing, and how are you?

Lydia
 

CindyM

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Learn about ALS
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US
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New England
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Anytown
Lee- the progression of this disease is hard enough without difficult personalities from family members getting in the way. I hope you have some caring folks in your corner. Certainly, you can count us among them! Cindy
 
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