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brendapals

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Happy Monday to all,

I just got a message from a friend of mine about Social Security having a new group of diagnoses that will only take a matter of days for approval...

ALS is one of the diagnoses.

She said it was called "compassionate allowances"-I just thought I would ask "my family" about it, so here I am. By the way, Al, can I borrow the car keys? hahaha:lol:

I'm heading off for a 4hr trip for my ALS Clinic appt tomorrow, so I'll be back on here tonight.

Keep the faith everyone!
brenda
 

BethU

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Thanks for posting that Brenda! That is big time good news. A government agency making things EASIER for patients ?!?!?

And recently, our veterans being (more or less) treated right by the government ?!?!? OK, treated a little better than usual.

I also had some surprising good news a month or so ago from my long-term care insurance. My ALSA rep insisted that I get my benefits going right away, because there is a 3-month waiting period. Also, the policy states that nurses have to visit and verify disability. But ... it took me only one e-mail and call back, and the insurance rep back-dated my request by 3 months (without my asking her to ... I didn't know they could do that) and skipped the nurse. The diagnosed of ALS was enough for my benefits to kick in immediately. I haven't even sent in my first bill to them yet, but they've refunded my premiums back to June!

Perhaps ... there is more ALS awareness out there than we think. Or maybe global warming is caused by hell freezing over. All that fire & brimstone has to go somewhere ...

AND GOOD LUCK AT THE CLINIC, BRENDA ! Let us know what happens.
 

brendapals

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Hey there,

thanks Beth for the great news from your long-term insurance!

Well, I talked to my friend about her "big news" from social security, and the more she talked about it, it didn't sound like anything "new", so I'm going to ask at clinic tomorrow and see if they know anything.

My EMG will be at 945am, please keep me in your prayers,

talk soon,
brenda
 

rose

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Brenda, I definitely will be thinking about you tomorrow.

Thanks for the SS possible information too.

As for my own little drama and SS, I emailed the occupational therapist down at the ALS clinic, not because of her specialty, I chose her because she was one that stood out in my mind in offering to help with anything. She emailed me back and said she'd forwarded my message on some of the members of the team who she knew had assisted with this before.

big hugs, and lets hope for some good news for you! :)
 

brendapals

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thanks so much rose,

and the most fun of all is that I can leave all the lights and tv on tonight, NOT make up the bed or clean the bathroom! hahahahaha

thanks for all the good hugs and thoughts,

and now, it's time to order my favorite- sausage and onion pizza!

hugs,
brenda
 

rose

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Yes, you make use of that hotel room! I did get tired of traveling over the years, but I never tired of room service :smile:

In the interim since my last post, I received an email from the clinic director at JH. She was "very disturbed" at what had happened, and said they would get right on working with my neurologist to write a letter of disability, and pull together my documents. She suggested I contact my representatives in the House and Senate too.

Enjoy the pizza

(hugs)
 

BethU

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Great news, Rose !
 

rose

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Beth, LOL I just saw your siggy, the "go Lakers or not" ha ha ha

I have completed sending both senators and my congressman an email about this.

I also looked at SS webpage on "compassionate allowances". I didn't really find a specific time frame that approval is supposed to happen within, but just having it be a new policy with them should help things along. It says the information regarding ALS was last updated on September 10th.

Here is what SS requires as backup records to approve:
Suggested MER for Evaluation: Documentation of a clinically appropriate medical history, neurological findings consistent with the diagnosis of ALS, and the results of any electrophysiological and neuroimaging testing.

.... Then of course there are those of us that have supplied that, but the person processing the claim did not find the need to take it into their consideration. :evil:
 

rose

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Jeff, Thank you for that. We actually have the USA Today delivered. I looked through it cover to cover after seeing what you'd posted, and cannot find it in yesterday's paper (I've not even hardly opened today's yet) Perhaps it was only in their online pulication. I appreciate it very much (gathering ammo) :)
 

ZenArcher

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Not a problem, the News Feeds on my site did the work I just pasted the link. There are about 8 different sites carrying the article now.
 

brendapals

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Yes, Jeff, thanks so much.

I got to talk to her yesterday, and I told her I would have to check it out more this weekend, when I have more time.

According to that link you provided, it could be that people could apply, even if they have been working, but I am sure they still limit the amount of income?

Don't know, but I'll try to find out more, I know in my case, it would be a blessing.
Keep the faith,
brenda
 

crystalkk

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brenda,

How did your appointment and emg go?
 

brendapals

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Thanks so much to everyone on here for their support and concern. You all are the greatest group of friends I have! And I sincerely mean that.

The EMG was fine, the appointment was fine, none of my strength testing, lung testing, speech testing has changed since my visit back in July. So that's good.

He only did the nerve conduction on my left arm, thank God, I was really sweatting the thought of the tongue part! I got to personally watch and hear the "fibrillations" in my wrist.
So ultimately he said my diagnosed is bulbar onset ALS, however, he thinks at a much slower progression than my brother. I know it's slower.

And I'm home safely, my hubby cooked supper, the garbage didn't get emptied, but I'm trying my best to handle that, and the best news of all................................

I just got my homework done! yippee, yippee

Happy Tuesday night to all,
Keep the faith always,
brenda
 

BethU

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Great news, kiddo !

(All this and homework, too :))
 
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