ventilator questions

[boxer22]

I know some people chose to get them, so my question is this, how long can a person with als live with the ventilator? A normal life span or at some point do they just give out to? Does anyone know? Does steven hawdings have one? Also does most insurance pay for most of it if you chose to vent or do you have to be very wealthy? Is it something you can get a lot of help with? Thank you
Ashley

 

[jean]

Hi
Just to answer the bits I can .Ventilation prolongs life ,but not to a full span. Obviously the disease continues and a locked in state will occur ultimately,which some people will cope with better than others.People permanently ventilated are more susceptible to chest infections , which can be fatal and of course disconnection could occur with the same result.
Stephen Hawking , I was told a month or so ago , is not on a ventilator regularly,although he does have a trachy.It is probably one of the reasons he is such a long survivor , because he can breathe by himself for the most part. I have no idea if he is vented at night. I would tend to assume he probably is.
Best wishes
Jean

 

[Al]

Mike aka Quadbliss would be the one to answer this question.
AL.

Or check out the thread Vent under this General Heading.

 

[quadbliss]

Hi Ashley,

I think Jean said it pretty well. Although a vent takes care of the most fatal part of ALS; breathing. There are other things that a quadriplegic is susceptible to. Due to lack of exercise, heart disease can be a problem. Also, systemic infection from which Christopher Reeves died. ALS patients do have an advantage over typical spinal chord injury patients. Because we can feel our bodies, we feel pain if there is a skin breakdown or a positional problem. This allows us to address the situation before it gets out of hand.

Having said all this, I know my vent will give me many extra years, if not decades. That is far better than the alternative. :-D

Mike

 

[boxer22]

Hi Ashley,

I think Jean said it pretty well. Although a vent takes care of the most fatal part of ALS; breathing. There are other things that a quadriplegic is susceptible to. Due to lack of exercise, heart disease can be a problem. Also, systemic infection from which Christopher Reeves died. ALS patients do have an advantage over typical spinal chord injury patients. Because we can feel our bodies, we feel pain if there is a skin breakdown or a positional problem. This allows us to address the situation before it gets out of hand.

Having said all this, I know my vent will give me many extra years, if not decades. That is far better than the alternative. :-D

Mike

Mike,
You made me feel so much better by answering that. Thank you. What about the insurance company are they a problem most of the time as far as helping paying for the vent? I know i am getting way ahead of myself but i would just like to know. Thanks
Ashley

 

[quadbliss]

Hi Ashley,

I don't know much about insurance and vents. I am on Medicare and Medicaid. They pay for every penny, including 24/7 in-home care. Sorry, but I don't know about any other insurance.

Mike

 

[Jamiet]

Medicare / Medicaid

Mike,

what are the income requirements for medicare and medicaid? I mean, i have a good disability policy, which will bring a good income when i need it, but, we all know this is a very expensive disease and i've more than paid my share of taxes to uncle sam..........

I will have COBRA for 3 years if i can afford to pay it, but, when does medicare and medicaid kick in and does it matter how much disab you have? I mean, does medicare / medicaid not insure you if you have "X dollars" of income?

rgds,

Jamie

 

[brooksea]

Jamie,

We are going through this right now. My husband has a long term disability insurance policy that will pay 60% of his salary. What you need to do is file for SS disability. With a diagnosis of ALS you will automatically be approved and they are supposed to fast track the approval process. After you are approved, you sill have to go through a 5 month waiting period which starts from the time SS determines onset of your disability. Notice I said "onset of your disability." This means to SS that you were no longer able to perform any type of work that you have training or education to do, it does not mean the onset of your ALS symptoms. In other words the last day you worked will be the day they determine the start of SS disability and then the 5 month waiting period begins before you will receive your first SS payment. You then will automatically receive medicare due to your ALS diagnosis.

You need to read your long term disability policy to determine if they penalize you for receiving other income such as SS disability payments, as they may deduct from the LTD payments. Individual policies vary. If I read my husband's policy right, he will only be penalized if other income goes over 100% of his original salary. Still receiving SS and medicare is better than paying COBRA. But you may have to have COBRA in the interum or if you have dependents.

Hope that helped a little.

cj

 

[Jamiet]

so, what i get, is when you are approved for SS, Mediare steps in, no matter what your income and / or asset or net worth is?

My disab is limited to 60% and includes SS, but i'm fortunate enough, that my base, is above what the max disab is, so, SS will likely no put me "over the top"and i'll be able to collect both.

I'm just concerned that medicare / medicaid won't step in if you have X number of assets or income. Usually, they want you to be 1/2 way bankrupt before they will insure you.

Also, i'm a CPA and CFO, so they are likely to give me trouble, as i'm at a computer all day.....typical uncle sam....they give it to the poeple who don't need or work for it and give the ones that really need it 10 kinds of hell to get it. My BIL was badly neurologically damaged and we're supportin gmy sister. I've never seen an agency do to someone what SS did to my sister for a mere $800 per month. They practically told her she was lying, need to get a job (they have 3 kids and she's pregnant with the 4ht) and told her she was lying, her husband needed to get out of bed and work (he couldn't even lift his head arms and legs)

 

[brooksea]

Jamie,

Everyone fears SS and the IRS! What power they wield! Sorry bout your BIL. What Bull! We feared the very same when we applied for SS. I filled out the repetitive application on line at the SS site (good luck by the way in doing just that - the site went down after I was almost thru with the damn thing!). You have to fill out two seperate forms: "Adult Disability and Work History Report" and "Social Security Benefit Application." We called SS - forget that route - these people don't know what ALS is. We made an appointment with the closest SS office and brought EVERYTHING but the kitchen sink with us (medical records, birth certs, SS cards, life insurance policy, etc). We then spoke fact to face with a young man who happened to be married to a deaf women, so I must say he probably could understand more than the ordinary SS person would. (just went thru my mind SS..the German SS! LOL) Sorry, I digress. Anyway, had to go over every spec of information we had and then some. It took two hours. He didn't know ALS was fatal and didn't know who Lou Gehrig was. I told him that I was instructed by the SS website to rate this a "teri." This is to indicate terminal illness-get the lead out and do your job ASAP!

We were approved almost a month to the day we applied. So now we wait 5 full months and on the 6th month a check should arrive.

This has all happened because of one man, John Huner a PALS. Here is some info for you that is available on the MDA website:

Social Security Administration (SSA) Commissioner Jo Anne Barnhart recently changed SSDI eligibility regulations in order to automatically grant disability status to anyone who isn’t working and has received an ALS diagnosis. Although applicants still must wait five months before receiving their first checks, this new "presumptive eligibility" ruling guarantees they won’t be turned down for benefits.

Hinkle said the rule change follows up on legislation passed in 2001 eliminating the Medicare waiting period for SSDI recipients with ALS. Although the new rule is unofficially being called the "John Hunter Rule," Hinkle noted that SSA doesn’t "name our regulations.

Jamie, medicare doesn't have anything to do with your assets - medicaid does. Also Social Security Insurance is for low income, so you would most likely not qualify for that as we did not either. What you are looking for is SSDI and Medicare for you.

Hope this helps clear some things up. We went through a lot of anxiety trying to figure this all out. Just be sure you can set yourself up somehow financially during the waiting period for your LTD and your SSDI. We are in a crunch right now because the HR department where my husband worked won't get off their butts with paperwork that needs to filled out. You know you don't want to seem like a burden to anyone, but if they had the damn disease they would be pretty pissed.

sorry ranting...

cj

 

[brooksea]

Jamie or anyone else-

if you need any help or have questions about how to go thru this process with SS, i would be glad to help you. just PM me and we'll talk.

thanks y'all

cj

 

[Jamiet]

....lol...

Now i've gotten everybody rowled up.......nothing like old uncle sam giving good citizens trouble.

I love america, it's the best country in the world...trust me, i've seen the world....(besides Canada..sorry my canadian friends..), but our lawmakers and our red tape, is geared towards giving to the un-needy.

Thanks jimercat, i've got Short term disab also. I would consider myself a lucky one, but everyone is not as fortunate as me and those that aren't, i will bend over backwards to help them, all they have to do is ask. I've been really poor before, working 3 jobs, on my own and have never forgotten where i came from.

it's amazing, we've always given to MDA, St. Judes childrens hospital and alot of other charities..i never dreamed, one day, it may be me on the receiving end, but, i've been able to make peace wiht myself.

Thanks to you guys (and gals) here, i'm am a better person today too. You've all helped me more than most people in my life. I consider you all friends, even though i've never met you all. I think we all feed off each other, it's the only way we know now.

You guys (and gals) need to get your pictures posted so we can put a face with the name. I have mine up, that's me and my boy in my boat, just back from a fishing trip. I will try to get one of my wife and baby girl up. They are my rocks!

take care all.....

god bless

Jamie

 

[ltr]

And what a great picture it is! I put mine up (with my big dog) and will get one together with my kids soon. Thanks for sharing Jamie! Leslie

 

[brooksea]

Annmarie-

Reading your post made me think this is so Sci-fi. Who would've thunk that people could reach across the world to identify with each other on such a level.

I got into the technology business when the internet was in it's infancy and got out to raise our son. At that time the USB port was a dream and we could not imagine what these manufacturers engineers were telling us about. Just think in the near future we may be able to connect to one another on a more personal basis with technology.

But what gripes me to no end is that we throw more money at artificial intelligence than we do real life intelligence, i.e. people. Yes, it is great that augmentative tech helps PALS and others, but a portion of the money gained from such technology would be welcomed for research into diseases such as ALS.

had to leave for a moment...

I guess ALS is an obsession when you have it or care for one who does. I'm am so glad that this forum is here. I probably would have lost my mind by now. I've tried to get my husband to look y'all up but I think it is too much for him to handle...going from tough guy to..well you Know.

Anyway I too appreciate everyone here!

 

[bdyle]

Hey Guys

Same here, if anybody wants to send me a PM I will try to help. Just went thru all this in 06, I here all of your problems, but I have to say I had no problems. I did everything over the phone and recieved my SS. disability and medicare with no problems, I also have a disability plan thru my job. In fact I didn't know medicare kicked in immediatly for an ALS diagnosed., the guy on the phone with the ss. office told me. I will try to help any way I can. Billy,