My Mom was just diagnosed with ALS

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Is there really any help out there for ALS people. I mean, I have tried getting her Medicare, Diability, anything at this point and I have been denied on all accounts. She has not earned enough quarters, she is too young to collect Medicare, her insurance is Medicaid, I feel like we are lost in the loop because of insurance. Very - helpless.
She has a Bi-Pap now and oxygen, but due to living where she does, they use a generator for power and she worries of running the generator all the time. We are meeting with Hospice this week. My mom is in dispair and very depressed. I cannot blame how she feels, but I don't want her to suffer. Does any group offer financial assistance at all?
 
If she has qualified for Medicaid there should be no problem getting necessary equipment for her. Also, you should check into welfare for help paying bills and food stamps if she can still eat.

There are really no agencies that help financially, except the ALS Guardian Angels. They will provide a grant, but it is limited, as donations are hard to come by. I would suggest you contact Stu at ALSGA.
 
Hi Tina. Do not blame yourself at all. I too would have thought the medicine too esecially knowing how much your mom was on. You are a great daughter and you continue to be.
I want you to know i am here for you and will be sending snail mail to your mom. Remember anytime you need help, et me know whether it is going with you to be with your mom or traveling with you to Ann Arbor (if i know dates ahead of time- i can request off) or watching those little ones. I have you all in my prayers.
Luv ya :cool:
 
Hi Tina. Do not blame yourself at all. I too would have thought the medicine too esecially knowing how much your mom was on. You are a great daughter and you continue to be.
I want you to know i am here for you and will be sending snail mail to your mom. Remember anytime you need help, et me know whether it is going with you to be with your mom or traveling with you to Ann Arbor (if i know dates ahead of time- i can request off) or watching those little ones. I have you all in my prayers.
Luv ya :cool:

TAMMY! I am so glad you joined this forum. There are so many helpful people on here. I learned about a lot of useful machines and the right questions to ask and people to go to. Thank you for beign there.
Love ya, Tina
 
a quiclk update... my mom is days away from joining us on-line! We are going via satellite! I am so excited for her, I cannot wait for her to be able to get on this forum too.
 
Well done Tina- looking forward to meeting Chris.:razz:


a quiclk update... my mom is days away from joining us on-line! We are going via satellite! I am so excited for her, I cannot wait for her to be able to get on this forum too.
 
Whoo Hooo for getting Mom online!
 
Anyone, please let me know... 2 days ago, mom was online, happy... feeling pretty well, and now... 104 fever, which broke with medication but is now climbing again. Her hospice nurse said her lungs were starting to fail... what does this mean? Can they get better? Is this the start of the end?
 
Tina I am so sorry!I hope she is better today! Do they think it is pneumonia? Is she getting antibiotics?
Prayers for you and your mum!
 
So sorry Tina. What do the nurses say? Hoping she's feeling better today.
 
I am sorry Tina, I didn't realize your Mom was on hospice. I will pray for her.
 
I posted an update of this past week in my profile... it was long. I have some questions that I wonder about. I mean are we doing this right? I know each person has different ALS sypmtoms and pains, etc. What do you do for it? Please check my private message.
 
Mom is scared. She is trying her best to fight this dreadful disease. But she is still loosing weight, hardly eatign solid food now and is wondering why she wants to sleep all the time? She wonders, as do I, what happens next?
 
Hi Tina I'm sorry you and your Mom are having a tough time. I know she was really sick recently maybe a little of the fatigue is from that. the not eating is tough. Is she thinking of a feeding tube? If her breathing is bad that is going to make her tired too. Does she have bipap?
Take care of yourself. this disease is so very very hard
 
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