Yesterday my husband was diagnosed with ALS

[Santa joe]

Sorry you had to join us but this is the best place to be. So many wonderful, caring and knowledgeable Pals and CALS here. You are not alone.

Debbie

 

[LaurieCALS]

Hold on, my PALS received social security benefits AND Medicare. He signed up immediately for Medicare because he had no health insurance. I hope they haven't changed that. I hope your hubby can receive both. I'm sure there's lots of threads on that.

Well either way, I hope he gets benefits soon.

Laurie

 

[affected]

I'm so sorry you have had to join our very elite group.

I hope you get the SSI issues worked out, there is enough to cope with at this point without these kinds of issues.

I'm in Australia so have no real clue of your system there as it is so different to ours. But I can welcome you and let you know that we give you support from here on in. Ask questions, read only what you are ready for here, let things that seem really scary go past, you can read them later when you feel up to it or need to know.

 

[MaxEidswick]

>Please do reach out to the ALS Association.

so sorry you are here. Make sure you contact ALSA and mda ASAP ... Also ask them if they can help you organize a second opinion. Our mda here runs/funds our ALS clinic at Houston Methodist ...

And welcome to our group

Max

 

[Janie H]

The social worker at my clinic did a good job writing a clear letter stating that I would not get better and the laws on ALS and I was on medicaid within 2 months, wasn't much but it helped, took six months for disability. That one letter helped get a lot of benefits.

 

[lostnsavd]

Hi,

I'm sure this must sound like a dumb/stupid question, but does anyone have the ALS Association phone number? With so much scam, I just want to make sure that I call the correct number.

Thanks so much.

lostnsavd...

 

[Nikki J]

Alabama Chapter
P.O. Box 2888
Huntsville, AL 35804
Phone 1: 256-519-9030
Phone 2: 800-664-1242
Fax: 205-449-9330
[email protected]
This is the chapter info

If you want to call national
Look on alsa.org

 

[GregK]

You seem to be running a bit ragged LostNSaved ... the ALSA info was up in post #3! And the question was neither dumb nor stupid, it was important!
I'm not ragging on you, but you want to be sure that you're caring for yourself, too.
If you burn out it will do neither of you any good... 8^]

 

[lostnsavd]

Hey Nikki,

Thanks so much for the info.

I did call and they have been so nice. Going to schedule a sevice coordinator out to visit us. But, I don't think that is going to happen any time soon. I had to take hubby a week ago to the ER with bronchitus. It has been 8 days now and the congestion isn't breaking up like it should. I am taking him back to the ER tomorrow. What kills me is, they should have "kept" him; but he has NO insurance, so they treated him and then handed me a bunch of prescriptions and that's that. I am at my wits end. I now have brochitus too, and of course I am his caregiver. Hahahaha. I didn't know that his title is 'share'giver. HAHAHAHA. One day at a time I guess.

Thanks again for your help. I also noticed that you said that you are the 6th person in your family to have ALS. My prayes are with you as well.

lostnsavd...

 

[lostnsavd]

Hi Gregk,

Yup! I am a bit ragged after all. Hahahha. I've been taking care of my husband with brochitus for the past 8 days, and didn't realize I was getting run down myself and now I have it. Hahahaha I think hubby's new nickname is going to be 'share'giver. Hehehe

I did get a hold of ALS in Huntsville, AL and they were really helpful and understanding. They plan on having a service coordinator come out and visit us, but not until we aren't contagious any longer. Sheez.

Anyway, I am taking hubby back to the ER tomorrow. His congestion just isn't getting better and I am at my wits end. I think if someone were to say "Boo" to me, I'd break down in tears.

Anyway, thanks for reminding me that I need to take care of myself too. I don't think I forget as much as ...by the time I take care of hubby's needs all day and get him to bed, I stay up because it is my time to wind down. Does that make sense? But, I don't think I am doing myself justice. I don't know. Well, I think I hear my pillow yawning, so I guess I'll call it a night. Thanks again.

lostnsavd (there is no typo) Hahahaha