Fortunately, I don't have chemo brain at this point, but my transplant is booked for the end of this month, so who knows? I do suffer from fatigue and have a fractured spine with my T4 vertebra having disintegrated and cannot be repaired. The fracture is currently stable, so the risks of surgery to insert rods and screws outweigh the benefits, but I am on a large dose of opiate-based pain relief to control the pain, which at its worst actually restricts my ability to breathe, also affecting my ability to work.
As such I have been off work without pay since the fracture on the 11th of March this year and, as my wife earns a high salary, I have not been eligible for any financial assistance from the government whatsoever.
I have always maintained a range of insurances through my retirement fund(s) since starting work in the late 80s, but unfortunately have found myself in dispute with one fund over my sole income protection policy and have not been paid a cent during my time off work. This fund also lapsed the Total Permanent Disability (TPD) and Death benefits I had with them, which is also in dispute.
Most recently, another fund holding my remaining TPD and Death cover has changed the definitions in the policy from "unlikely to be able to return to a line of work that you are qualified and experienced to undertake" to "will never be able to carry out any form of work again" -- a very substantial moving of the goal posts. This is also in dispute, as the change occurred after my diagnosis and as such has denied my the opportunity to take out additional coverage to fill the gap, Trauma insurance, or similar that would pay out on the occurrence of a life threatening injury or illness.
Basically, after paying thousands of dollars in insurance premiums over decade and hundreds of thousands in tax, we have not received one cent in support or assistance with the only cover I (and my family) have is if I die.
Sorry to derail the thread but the thought of possibly getting chemo brain as well terrifies me, as the only hope I could see was being able to return to study after my transplant so I could move to a less physically demanding occupation.
My current role is a hands-on technical position in marine sustainment, involving quality assurance and certification of work done as well as the investigation of breakdowns and operating issues on in-service naval vessels. Previously I have worked in shipyards on new build destroyers and in submarine maintenance. It is looking more and more that I may never be able to work again in the areas I have been employed for decades.
Forums
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Paul H - Name: Paul Harvey
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2014
- Age at diagnosis: 43
Re: Long term disability claim for chemo brain?
It pains me to read some of these stories, but as it often works out in life, you get kicked and ruffled up when you are in your most vulnerable state. I have a few follow-up observations to what I posted originally.
To Ladyaero - You should be crystal clear regarding the terms of the LTD policy. There are two types: "your own occupation" coverage and "any occupation" coverage. The former is the better coverage and is more expensive. That coverage remains until 65 as long as you cannot do your job. Within that coverage, there is also a specialty sub coverage that specifically covers your specialty within your field of work. Again, that costs more.
The latter (“any occupation”) coverage works usually as follows. You have "your own occupation" coverage for two years and then "any occupation" coverage until 65. This means that after two years your benefits will stop if you can be a garbage man. In addition to all of that said, it matters who the underwriter of the insurance is. There is a difference between reputable and hole-in-the-wall underwriters. There is no official statistic here, but New York Life will have a better track record of paying out claims that Joe-Schmoe insurance down on Bedford Avenue.
I would make one additional observation. I would suggest for those patients that are ruminating on these issues, that you should talk to an attorney before even filing your claim. You need to establish a relationship and have things teed up for when, and if, a contest presents itself. Also, a knowledgeable attorney should be able to give you some insights and maybe even help with the paperwork. Starting to think about these things when the dispute letter comes in the mail, how should I say, may not be the best approach.
Also, you should keep in mind that if, and once benefits stop, it may be a few years before a case is resolved (assuming you find an attorney and dispute the denial). So, you should have funds saved and set aside.
Of course, I am assuming a scenario here where a patient lives past the 5 year milestone. If the patient is bedridden or in moribund state, clearly filing cases and dealing with all of this stuff would be out of question, but presumably, if indeed this is the patient's state, then hopefully no insurance company will have the audacity to stop the patient's benefits. At least, one would hope. Regrettably, as evident from some of the posts I've read here and in other places, my hopes may be more in the domain of wishful thinking.
Anyways, long story short, be prepared upfront, while you can. Read, read, and plan.
Best of luck to everyone.
To Ladyaero - You should be crystal clear regarding the terms of the LTD policy. There are two types: "your own occupation" coverage and "any occupation" coverage. The former is the better coverage and is more expensive. That coverage remains until 65 as long as you cannot do your job. Within that coverage, there is also a specialty sub coverage that specifically covers your specialty within your field of work. Again, that costs more.
The latter (“any occupation”) coverage works usually as follows. You have "your own occupation" coverage for two years and then "any occupation" coverage until 65. This means that after two years your benefits will stop if you can be a garbage man. In addition to all of that said, it matters who the underwriter of the insurance is. There is a difference between reputable and hole-in-the-wall underwriters. There is no official statistic here, but New York Life will have a better track record of paying out claims that Joe-Schmoe insurance down on Bedford Avenue.
I would make one additional observation. I would suggest for those patients that are ruminating on these issues, that you should talk to an attorney before even filing your claim. You need to establish a relationship and have things teed up for when, and if, a contest presents itself. Also, a knowledgeable attorney should be able to give you some insights and maybe even help with the paperwork. Starting to think about these things when the dispute letter comes in the mail, how should I say, may not be the best approach.
Also, you should keep in mind that if, and once benefits stop, it may be a few years before a case is resolved (assuming you find an attorney and dispute the denial). So, you should have funds saved and set aside.
Of course, I am assuming a scenario here where a patient lives past the 5 year milestone. If the patient is bedridden or in moribund state, clearly filing cases and dealing with all of this stuff would be out of question, but presumably, if indeed this is the patient's state, then hopefully no insurance company will have the audacity to stop the patient's benefits. At least, one would hope. Regrettably, as evident from some of the posts I've read here and in other places, my hopes may be more in the domain of wishful thinking.
Anyways, long story short, be prepared upfront, while you can. Read, read, and plan.
Best of luck to everyone.
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ivanm - Name: Ivan Mitev
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August, 2011
- Age at diagnosis: 37
Re: Long term disability claim for chemo brain?
Hi,
I agree with ivanm's comment that it would be good to consult an attorney if you are thinking of trying to file for disability. I would recommend looking for one that specializes in elder care law and, preferably, also has expertise in Medicare and Medicaid laws.
We saw an attorney with these qualifications when we were trying to see if my husband would be eligible for Social Security disability. Even though he didn't qualify for it, she made us think of other important things, and we ended up having medical and financial power of attorneys drawn up, as well as new wills and a trust to ensure our finances were handled how we want if / when we ever cannot handle things on our own. I could even handle everything for my husband legally now if he became unable to (think potential future transplant?) and, of course, he could handle everything for me now.
The attorney also made us think about the possibility of having to significantly deplete our retirement assets paying for my husband's multiple myeloma care and, instead, how to also protect half of the assets so that if he were to die, I would not be left in complete poverty. If we had to pay for even his Revlimid ourselves every month, our retirement nest egg would go down pretty fast.
Fortunately, I am also still working and have the employer's health insurance that covers his treatments, so it's not an issue right now. But it really was helpful to get some insight from the attorney and know that we can take additional legal measures down the road if we need to.
The attorney wasn't cheap of course, but we felt it was too important not to get the advice and get things in order.
Best wishes,
Chris M.
I agree with ivanm's comment that it would be good to consult an attorney if you are thinking of trying to file for disability. I would recommend looking for one that specializes in elder care law and, preferably, also has expertise in Medicare and Medicaid laws.
We saw an attorney with these qualifications when we were trying to see if my husband would be eligible for Social Security disability. Even though he didn't qualify for it, she made us think of other important things, and we ended up having medical and financial power of attorneys drawn up, as well as new wills and a trust to ensure our finances were handled how we want if / when we ever cannot handle things on our own. I could even handle everything for my husband legally now if he became unable to (think potential future transplant?) and, of course, he could handle everything for me now.
The attorney also made us think about the possibility of having to significantly deplete our retirement assets paying for my husband's multiple myeloma care and, instead, how to also protect half of the assets so that if he were to die, I would not be left in complete poverty. If we had to pay for even his Revlimid ourselves every month, our retirement nest egg would go down pretty fast.
Fortunately, I am also still working and have the employer's health insurance that covers his treatments, so it's not an issue right now. But it really was helpful to get some insight from the attorney and know that we can take additional legal measures down the road if we need to.
The attorney wasn't cheap of course, but we felt it was too important not to get the advice and get things in order.
Best wishes,
Chris M.
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Chris M.
Re: Long term disability claim for chemo brain?
I have had multiple myeloma for 18 years and fortunately have never had to deal with these issues. My heart goes out to all of you. It is criminal that, while we are at our lowest ebb, we have to deal with all of this paperwork. I have enough trouble paying a bill!
Chemo brain is a very real condition and, once established, does not go away (in my experience). I had a fall at work and was trying to get payments from WorkCover (our employer funded insurance cover here in Australia). Everything was moving very slowly until finally my enquiry as to the reason was met with "but you have multiple myeloma don't you". It was at this point I gave up, retired, and went on Social Security Disability Support. I was astounded.
Good luck to all of you.
Chemo brain is a very real condition and, once established, does not go away (in my experience). I had a fall at work and was trying to get payments from WorkCover (our employer funded insurance cover here in Australia). Everything was moving very slowly until finally my enquiry as to the reason was met with "but you have multiple myeloma don't you". It was at this point I gave up, retired, and went on Social Security Disability Support. I was astounded.
Good luck to all of you.
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SusanMary - Name: Susan Brown
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb 1996
- Age at diagnosis: 47
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