New medical standard of care for ALS?

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MickeyMouse

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Has anyone heard, or can anyone find, new care guidelines for ALS?

One of our facebook friends mentioned it in reference to PFT (pulmonary function test) levels for needed for qualifying for a bipap. There is one standard of care, which is not dependant on which insurance you have. But my thinking is this-- If I know what the standard of care is, then I can help enforce it. I've looked all over the net and I've come up empty. Wright, do you know?
 

sadiemae

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Hi, We are going to be seeing Dr Robert G Miller, at Forbes Norris, in San Fran, CA. I did some research on him, and he is the lead authour on "Guidelines on treating ALS" published by the American Acadamy of Neurology in the Oct 13, 2009 issue. Giggle his name, and you can find some good articles. HUGS Lori
 

marywest45

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As I understand it depends on FVC ( Medicare is below 70 or 60 % of predicted), or abnormal Sleep study.
 

sadiemae

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That is it, Dr Miller was the lead author. We are so excited to meet with him on July 7th. HUGS Lori
 

MickeyMouse

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Thank you so much! Wow Lori, this guy is the bomb! Dr. Miller has reviewed all the studies on every facet of ALS and even listed recommendations of specific areas for future research. How cool.

My apologies for opening this thread and then disappearing. I was reading Dr Miller's Guidelines and was fascinated. (Yeah I'm a nerd.)
I wanted to summarize it for us but there isn't anything new particularly, just what we already know......

1.) Start rilutek
2.) Monitor weight
3.) Stress good nutrition and see the speech pathologist
4.) Encourage strengthening exercise taking care not to overdo (This is my addition because of results from a more recent study.)
5.) Monitor swallowing and FVC (forced vital capacity of the lungs) at 3 month visits
6.) Peg when weight loss occurs. (more research needed to determine the best timing)
7.) Bipap for respiratory insufficiency. (more research needed to determine the best timing)
8.) ventilation via trach

Sorry nothing new here. Just more research needed. :-(

Thank you so much for your responses everyone. This forum is great and you all are wonderful.
 
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JeffP

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my nurologist requested that i need top be on the bipap .i sleep fine almost always are energetic why would she suggest the need for it any ideas thanks
 

BarryG

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Jeff, I was sleeping fine without the bipap too, or at least I thought I was. No headaches on waking or any of that but since I have been on it (now a month) I have noticed that I have more energy during the day and have gained three pounds. I believe (just my opinion) that my body is working less hard while I am sleeping with the bipap and is able to conserve energy leading to my weight gain.

And usually they want us on bipap when our FVC reaches 65% so that may be why she wants you to start on it.
 

abbas child

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Jeff, did she tell you what your FVC (Forced Vital Capacity) is? And, do you have a headache when you wake up, but it goes away after you're up for a little while? That's one sign I keep reading about. It's possible, I suppose, she just wants it in place for you, thinking ahead. I think you told me that you had another test to do, even though your regular testing was still good. And there's Barry sneaking in (haha) with better comments. He's on a Bi-pap, and I'm not.
 

BarryG

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Oh I am soooo sneaky! Not better comments Ann. I think that getting things before you need them and using them (like the bipap and the speech machine) makes it easier on our bodies and easier on our minds. And like they say practice makes perfect and the more we practice and get to know how to use all of this stuff the easier it is on our caregivers and loved ones. Why make them work to understand what you are saying when you have a machine to talk for you? Sorry, my rant for the day!
 

irismarie

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As someone with the bipap sitting comfortably as decoration beside the bed, I just wanted to say about speech - that tho I know mine is somtimes like an old 78 played slow, often I think I am saying a word perfectly clearly but have to repear it several times to be understood. Do you get that?
 

marya

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Marty uses his bipap at night - and is supposed to use it any time he is napping even during the day, but he doesn't. It hasn't given him much more energy but I think it definitely makes a difference in the way he feels.
 

BarryG

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Irismarie, although I have completely given up trying to make human sounds now, when I still could talk a little I could not understand why no one could understand what I was trying to say. It seemed to me that I was the only one doing any work in a conversation and that people were just not using their brains. Like if we are having a conversation about the price of something why would I say "That is wooly sheep"? I mean come on, obviously I am trying to say "that is really cheap"!

I knew that I wasn't completely clear but I thought that I was doing a good enough job, obviously not. My son, who is into all kinds of screaming, shouting, rock music with (to me) unintelligible lyrics, was better at understanding me than anyone else. Maybe i should have been the front man for a band?
 

JeffP

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hi all thanks for your reply my fvc is 73 percent .i now after thinking of it how can it hurt just like barry said give the lungs a break .as for headaches i hardly have them and feel well rested when i wake .well i made the decision to go pick it up and do what my nuro says thanks all
 
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