Stable ?

[BethU]

I couldn't figure out where to fit this in, so started a new thread. This has really thrown me.

I have a case manager who works for my health insurance company. (Actually, she's a sub-contractor, on behalf of the insurance company.) She's also a case manager for my husband.

She just e-mailed me and said that her boss wants her to close my case because I'm "stable." (Clearly she doesn't mean mentally ) She'll keep my husband's case open (I should hope so), so will be contacting me and keeping track of my situation, too, but won't be documenting it, "unless I have a setback."

I'm a little dumbfounded. This is ALS. It's progressive. It's progressing in me. The concept of "setback" doesn't make sense. As I continue to lose functionality, it's not a "setback" ... it's the natural progression of the disease.

I guess I'll just answer her and lay out my thoughts, but does this make sense to any of you? :roll:

 

[ZenArcher]

I would explain to your case worker that even social security recognizes ALS as a terminal diagnosis. Unless they (meaning the health insurance company) are willing to prove a world full of neurologists, researchers, PALS, CALS, friends and families wrong I would recommend to them that your case remain open.

Don't let them bully you. Talk to your local ALSA chapter and see if they can offer assistance. If not ask the health insurance rep if you can give their contact info to the media for follow up :mrgreen:

 

[BethU]

Jeff ... great advice. Thank you! I love this: If not ask the health insurance rep if you can give their contact info to the media for follow up

 

[brendapals]

Beth-

Isn't it great that we can be mentally stable enough to move forward with the insurance folks?
Just a little bit of humor on a long Tuesday night of homework for me!

Yes, talk to them tomorrow, or email them back and have them keep your case open! I actually had a man call our home tonight because I forgot to pay a bill 2 weeks ago, when he asked "can you tell me why you forgot to pay it?", I told him it MIGHT have something to do with my recent diagnosed of ALS, and he actually said, " oh, I'm sorry, I hope you get better soon". Once again, I got to give him the 5 minute explanation of ALS, which in turn encouraged me to do my homework!

Ain't life grand?
Hugs,
brenda

 

[tmasters]

Last week I've was asking for donations for the ALS Walk. In my email, I gave a pretty clear explanation (I think) of ALS and how it progresses and what the prognosis is.

I've had one response of "good luck in my recovery" and one person ask if I'm "feeling better yet". :roll:

It's all meant well, I know. But I honestly don't know how to respond to this sort of thing. In the first case I explained that there is no recovery, etc., but I think I came across as berating them for well wishes. Argh! So the second time I sort of dodged the question.

-Tom

 

[Zaphoon]

All of this just points towards the abundant ignorance out there regarding ALS. I wonder sometimes what it would take for there to be an awakening regarding ALS; another celebrity coming down with it? Another Lou Gehrig perhaps?

People treat it like its a case of cooties.

Zaphoon

 

[John1]

A few years ago, a child wrote George W. Bush telling him that his Dad had ALS and asking him to help. G.W. wrote back that he was really sorry to hear that but hoped he'd be better soon.

 

[BethU]

Thanks for all the advice and support. They are keeping my case open.

I first wrote nicey-nice. If that didn't work, I was going to ask them to send me a written explanation of why they were dropping me. Then I was going to drop the Jeff-bomb, and ask for a number for media contact !

When I was growing up (in the 40s), everybody knew about Lou Gehrig's Disease. Not only because Gehrig was such an unbelievably great and beloved athlete and nobody had ever heard of this disease before, so the public was horrified at his death ... it was like a national tragedy ... but also because they made a major movie about his life a few years later, with Gary Cooper.

Other well-known people have died from it: Catfish Hunter, Ezzard Charles, and David Niven ... but I guess they are another era, too. I hate to think of anyone else having to get this, but it probably will take a famous person to bring it to public awareness. Like Magic Johnson made people understand that AIDS was something that endangered everybody. And Reagan made people more aware of Alzheimers Disease, and Michael J Fox made it known that Parkinson's can strike at any age.

My hunch is that once they start unlocking one of these neuro diseases ... when they figure out what triggers it and why it progresses ... it's going to lead to cures for all of them. There is so much overlap of symptoms. I really feel they are getting closer ...

 

[L4dybugg]

I can relate to this already, my husband is not diagnosed yet, but trying to tell our friends and family that he might have it, its just like they don't get it. Most don't even know what it is, what happens to those with it. I'm like hey my husband might have a terminal illness, don't you care!

 

[BethU]

I know ... it's like people are hardwired to say, "Feel better soon!"

Also, people keep saying, "You look good," like they were expecting me to have big blotches all over or something.

But people really don't understand ... this disease is WAY outside their frame of reference. So I guess it's up to us to educate them.

 

[sharonca]

If one more person tells me I need to exercise or I'll lose my muscles I may scream.

Sharonca

 

[BethU]

OMG, they don't ! Cheesh ...

 

[trying to stay positive]

Yeah, you guys, I hear you. People will tell me that my husband looks pretty good, or he doesn't look too bad, or well, he can still walk, etc.. Sometimes I want to scream at them that he can't get dressed by himself or open a cereal bag, or get a dish down from the cupboard, or what do you mean, he looks good?! He is so bony and has zero energy!

OK, sorry for the rant. It can just be so frustrating sometimes. Today for the first time I saw him going up the stairs not only bent over completely from the waist like he usually does (to help keep his balance) but going up step by step. It is a year now & we still have not been able to sell our house. Oh well, sorry again!

Linda

 

[BethU]

Rant away ! Thank heavens we have a place to let it all out !

 

[Zaphoon]

I had a local t.v. news station at my house on Monday afternoon (and the main floor was spic and span Rose!) to interview me regarding the current mortgage crisis. During the interview, I mentioned I was in the process of undergoing a diagnosis for a suspected NMD. Of course, the news lady didn't have a clue as to what NMD meant (and to be fair, neither did the camera man). They still didn't after I told them.

But boy, she sure was pretty!:mrgreen:

Zaphoon