Concerned about delb

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brooksea

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Has anyone heard from delb today? He indicated in last post he would contact ALSA/MDA via email.

I know the Georgia ALSA will intervene if necessary when problems arise between caregiver and PALS. I would assume this would be the case in TX also?

If this is truly happening, there is no reason on this earth why delb cannot be helped!

When you think things are going badly, there always seems to be someone worse off in the most unimaginable way!

-----was going to PM delb but can't :(
 

Icanmanz

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CJ, I am so glad that you stepped forward. I am concerned about delb, too. I even told him that his wife's behavior is abnormal, and should not be tolerated. I asked him where his rights are! What happened to his rights? This is total abuse. del is helpless, and if his wife thinks that she can handle this situation however she pleases, just because she is the "WIFE" she is wrong! Yes wifey, you can wind up in tons of trouble! I hope he is okay. He has no relatives, no children, so what is he to do? Bless his heart!

Irma
 

delb

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I'm still here figuring things out. At war with this disease and working on many ways of stopping it. So far seems to be working. Also reworking my financial life. No more joint checking accounts with wife ! My mind is working overtime.
 

freddiesnetty

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Ahhh, there you are was very concerned about you :):):) I am so happy to hear about the joint checking account...YEAH It will all work out, I am sending lots of prayers up for you. Stay in contact here and everyone will help you out.............lots of love and prayers :):):
Annette
 

brooksea

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delb,

Have you contacted ALSA to come see you? There is no reason whatsoever that you cannot be seen by the ALS clinic in your area for FREE! And if you cannot get your wife to take you there, I'm sure ALSA will find a way...

All of us are deeply concerned about your plight. Let us know if we can help you in some way to make sure you have adequate help!
 

delb

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Thanks for the support and suggestions. I am working on so many things the last few days I got behind on postings. Depression and the length of time it takes to eat and drink anything slows me down. I eat and drink more like a dog, with head down. Choke if head up. It is effective and may be the reason why I want one so bad. My weight has stabilized the last month. Asking for help is hard for me. Never have before.
 

brooksea

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It's OK delb.

My husband still refuses to ask for help! But I am there to try to facilitate the process of getting help without him asking. That is why you need someone to advocate for you. You suffer needlessly.

I understand the way in which you are able to eat your food, but you could get a PEG to help your body with nutrition so that you could regain your strength. And you really need antidepressant of some sort to help you over this very stressful time.

You did not say what the ALSA/MDA said via email. Were you able to contact them? If you are too worn out to do this, let me know and I will give you my email address so we may correspond. I will be happy to get someone to come help you, as others also have offered.
 

delb

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My mother had a feeding tube. I believe eating real food and drinking water is critical to stopping this thing. May come to that one day, but not now. My eating and drinking has actually improved the last 3-4 months. I won't give up. Have not heard back from anyone yet. Have been off all drugs all year.
 

georgia

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You could liquidfily "real food" and not use the canned. All they want is water in us they didn't say how at least you wouldn't choke. It is better than an IV. My husband doesn't have one yet but we have talked about it. He said when the choking starts he will. I am sure it is something to get use to the idea but from all I have heard it isn't that hard to heal from if you don't wait to long and will help greatly.
 

cheryilyn

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Sept. 06
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Del,
I can understand your not wanting to give up eating. I have had my peg for a year now and had to fight dieticians, doctors and even my mom to keep eating. i got it because i couldn't swallow pills and water. now that i can no longer eat i have been trying to convince mom to juice for me, but she doesn't seem too understand how much i hate the formulas. I guess it will have to wait till my husband finds a house and him and my kids start taking care of me. I am not sorry that i got it when i did. you wouldn't have to use the formula at all you can puree and juice just about anything.
 

delb

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PALS
Diagnosis
07/2007
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Texas
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Seagoville
About 5 months ago I would choke a lot. Even blocked my air passage twice in restaurants. I coughed hard and blew out the obstruction both times. Has not happened since then. The way I see it I would rather chock to death living life normal and eating something I really love. Since then I don't choke, but sometimes cough. Changed the size of the food I put in my mouth. The problem is my tongue, just does not move the way it use to. So I use other ways of helping it do it job. I adapt super well.
 
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