Disability - when the issues aren't clearcut

[GardeningMSer]

At 58, I've been working for the same employer for over a decade. I'm a programmer, I've done a great job, and mgt has demonstrated their support both before and after my MS dx in 2000.

Over the last year or so, as my legs weaken, it is clear that my brain's ability to process new information is greatly diminished. I'm trying to learn how to create web based applications, and despite an IQ that was once at the top of the charts, I can't retain anything for more than five minutes.

My analytic skills are still good, I can ask good questions ... but creating new code just isn't happening. Were the company in need of analysts, rather than coders, I could change positions, as things stand there are no positions likely to open up.

Add ongoing exhaustion, headaches, occasional bowel issues, all too frequent bladder issues and I feel I should go on the two year long corporate disability policy while I'm still capable of enjoying life. My mgt and my neuro are supportive - the decision is mine.

Am I missing something?

Thanks,

G
enjoying Spring in January

[Abby2006]

I was married to a programmer analysts for 24 years so I kind of understand the world it revolves around. If I remember correctly 'coding' involves correcting something not developing something, am I correct? I used to be able to code some COBAL because for a analysts that is a very borning tedious job that in their creative little narrow world have no time for.

What was the question again?

Abby

[mmcc53]

I suggest that unless you job is you whole life, you go out on disability and enjoy life.

However, disability policies usually require you to apply for SS. You need to be sure your doc will support it. Also have you had neuopsych testing? If not, you need to get it.

My IQ dropped 25 points according to the test, but it was still way to high to be an issue since I could not find a copy of previous testing - before MS - which would have demonstrated a drop.

It can still help, though, to document memory problems.

SS requires that you be unable to work at ANY job, not just the one you have, so you need a pretty strong case - I suggest that if you are having mobility problems, you get a wheelchair, scooter, etc. It will help - although it is idiotic, mobility problems seem to count big time with SS.

If you are even considering going out, then you need to start documenting like crazy. There is a site on this web page dedicated to SS and disability filings. The people there are VERY knowledgeable.

[Abby2006]

feel I should go on the two year long corporate disability policy

This is the question,

its really up to you, is it the pressure of the workplace maybe you could work at home and the pressure let up would help you

Abby

[Abby2006]

And what mmcc53 said

Abby

[GardeningMSer]

Thanks for the quick responses. Here are some details -
I get two years under my corporate disability policy before I have to apply to SSDI. At that time I'd be over 60.

I use a scooter. W/o it I use a cane, can go about 50', but as my right leg barely lifts up, I trip and fall. At home, I use a wheel chair. Fortunately we live in a ranch style house.

I've had neuropsych testing which showed my visual memory skills to be almost non-existent.

My wonderful wife loves her job and me, not necessarily in that order, and can put me on her medical insurance.

Our only dependents these days are two cats. The kids are doing well.

[lady_express_44]

Hi GMSer,

Wow, I could have written that story a few years ago. In fact I think I did. :p

mmcc has provided some good advice, especially with regard to:

- getting your neuro's support
- fully documenting your circumstances
- being aware that they can ask you to do ANY job
- taking this time out for quality of life

It sounds like you have thought out most of the obstacles to acceptance though ~ good for you!

When I had reached a point where commuting, the noise level, and my fatigue were too overwhelming, I negotiated a "work from home" situation. This took discipline, but I found it much easier to function without people mulling around me all day, and where I could opt to work only when I was feeling reasonably well.

Having that flexibility allowed me another two years in the workforce. Although it wasn't an ideal situation for my employer, fortunately they were compassionate and supported my desire to continue working. Obviously not all employers/jobs can accommodate this option, or any kind of flexibility, but it is worthwhile to ask for that consideration as it proves that you did everything YOU could to stay in the workforce.

There came a time when even working from home was too hard, and I felt terribly guilty about taking pay when I was not being very productive. It ate at me that they were not getting their money's worth out of me, while they could from another worker. I really hated to admit that, and was afraid I may ultimately be terminated due to my inability to perform adequately!!

That's when I came on the board and asked for people's opinion on "when is enough, enough?".

With all the advice I received, for some reason one sentence that someone said stuck out in my mind . . . "Sometimes managing our MS becomes a full time job". That's exactly the point I had reached; where it was basically all I could do in a day was to find ways to work around the disease, just to keep myself going. Although I still hated admitting "defeat", the decision was much more clear-cut.

Good luck. You've paid your dues and deserve this break.

Cherie

[Abby2006]

I'd take the offer, coders are a dime a dozen ,another words replacing you will be no problem, I'm sure you did an excellent job but in the computer fiedl there is always somebody waiting. Sounds like you were well thought of and very valuable so take a rest.

Abby

[snack]

What are you waiting for? You cannot do your job properly. This is what insurance is for, you paid for it now make use of it.

I don't get what this "defeat" another poster is talking about. If work is all one has in life then perhaps having to give it up can be seen as "defeat" or hopefully people that see it that way would quickly learn that they need to get a life.

Take a look at an old posters blog on how to file a disability claim, it is pretty good:


http://willymsrant.blogspot.com/2006/11/pragmatic-look-at-filing-disability.html

[lady_express_44]

I don't get what this "defeat" another poster is talking about. If work is all one has in life then perhaps having to give it up can be seen as "defeat" or hopefully people that see it that way would quickly learn that they need to get a life.

That's the way I felt Snack. I had spent many years getting my education, making my way up the corporate ladder, building my reputation . . . so it felt like defeat to have to give up my career in my mid-40's. I LOVED working.

I am not suggesting that anyone else should feel that way, it's just the way I felt.

Cherie

[Cat Dancer]

Thanks for the quick responses. Here are some details -
I get two years under my corporate disability policy before I have to apply to SSDI. At that time I'd be over 60.

I use a scooter. W/o it I use a cane, can go about 50', but as my right leg barely lifts up, I trip and fall. At home, I use a wheel chair. Fortunately we live in a ranch style house.

I've had neuropsych testing which showed my visual memory skills to be almost non-existent.

My wonderful wife loves her job and me, not necessarily in that order, and can put me on her medical insurance.

Our only dependents these days are two cats. The kids are doing well.

Well, then... the FIRST thing you should do is get onto your wife's medical insurance policy. THEN take your leave, your corporate disability policy --

unless that permits you to continue getting medical coverage (I never worked where there was such a thing, so don't know the details of those.)

The point is: MAKE SURE you have continuous health insurace, either through the disability policy, or your wife's policy, before you actually quit your job. Then quit, and enjoy yourself!

You might actually find your health improving, some, when you don't have the stress of having to work, having to perform-for-pay.

Once you're over 60, near retirement age anyway, SSDI sometimes is easier to get anyway..they're less apt to question your ability to work.

Good luck to you. And have fun with your early retirement!

[Numbers]

SS requires that you be unable to work at ANY job, not just the one you have, so you need a pretty strong case...

Well, not quite. Your understanding is correct if the SSDI applicant is under 50 years old. If under 50, the applicant's disability will indeed be evaluated with the idea of: can the applicant work ANY job, not necessarily the one for which he is trained? This would mean something like teaching and old dog new tricks.

HOWEVER, if the applicant is over 50 years of age, the applicant's disability is evaluated based on the assumption that the applicant will continue in his chosen field. In other words, the old dog is not expected to learn any new tricks.

I know of what I speak...that is how I obtained my SSDI benefits.

Numbers

[jena1225]

I must ask:

When they say thay you must not be able to work ANY job, do they take into consideration that if you were to get any old job, that your job may not be secure. That is, with the relapses, fatigue, etc.. turn into days off, how can someone hold a job?? There has got to be more than just that. For example, say I have severe fatigue, pain, tremors, spasms, weakness that are pretty consistant, yet, I AM able to physically work because I am not wheelchair bound. If you think about it, most people can do SOMETHING.

I did hear that if you are not able to work in the "current field/capacity" that are in, THEN you could quailfy. Would love some clarification :)

I am not sure if I put that in correct wording or terms (scatter-brained a bit) for you to understand :confused:

[mmcc53]

GardeningMSer,

I want to add - I have been retired on disability for several years - and I LOVE it (except for the MS). I garden constantly, have time for my grandson - who is more important than ANY job, and I have 2 lifetimes of things I want to do. I miss 3 things:

1. My body
2. My mind
3. My paycheck

However, the first 2 would be missing in action whether I was working or not and I am fortunate to have disability retirement AND SS. While it is a substantial "pay" cut, I can manage.

The advice to change to your spouse's insurance is very important - do it first, don't just take verbal assurances that it can be done.

When it comes to disability insurance, SS, etc., UNLESS IT IS IN WRITING NOTHING COUNTS.

In your original post, you didn't say how old you were. Numbers is correct - the standard of having to work at ANY job is different due to your age.

Also, both SS and most disability policies have no-fault provisions to let you try to return to work if you want to and not lose you eligibility for SS and disability - in other words up to a certain amount of time you wouldn't have to "re-prove" that you were disabled to return to disability retirement.

SS and some disability policies also allow you to earn a certain amount per month without losing benefits. I don't know the exact number, but with SS it is something between $800 and $900 a month.

Both those provisions offer you some protection in that they let you try to return to work if you want to,

jenna1225 - wheelchair bound does not mean you can't work - lots of people in wheelchairs and scooters can and do work, but it does help you get ss if you use a chair or scooter.

In fact the person who had my job before me had MS and worked the last several years completely unable to walk. She did not have cognitive problems or other problems which kept her from working. She worked til normal retirement age.

And yes, below age 50, they mean any job. All the MS symptoms that lead one to apply probably mean you can't really work at any job, but, for example, if one was working in a job which required a lot of physical exertion, one might very well be able to work at a desk job, if for example, you didn't have fatigue, cognitive, or vision problems.

[jena1225]

MM - That is kind of what I mean. How does ANYONE qualify for Disabilty?

I mean, unless of course, you are more than wheechair bound (can't walk, talk, etc...) and it is obvious you cannot do any job. Otherwise, you are absolutely correct, even in a wheel chair, people can work.

So, I still do not quite understand how one does quailfy? Is the SS what you are talking about different? You can work?

[Cat Dancer]

I must ask:

When they say thay you must not be able to work ANY job, do they take into consideration that if you were to get any old job, that your job may not be secure. That is, with the relapses, fatigue, etc.. turn into days off, how can someone hold a job?? There has got to be more than just that. For example, say I have severe fatigue, pain, tremors, spasms, weakness that are pretty consistant, yet, I AM able to physically work because I am not wheelchair bound. If you think about it, most people can do SOMETHING.

I did hear that if you are not able to work in the "current field/capacity" that are in, THEN you could quailfy. Would love some clarification :)

I am not sure if I put that in correct wording or terms (scatter-brained a bit) for you to understand :confused:

The Social Security administration..which also administers the Social Security Disability Insurance (SSDI) program is quite strict about the issue of work -- if you are under 50 years old, they will try to determine whether you can perform any gainful employment..not just what you're trained to do, or eligible to do. But if indeed you have significant impairment -- as you described, "severe fatigue, pain, tremors, spasms, weakness", etc. -- you don't necessarily have to be in a wheelchair. When I applied I was getting around with 2 forearm crutches, and able to drive, for example.

Your doctor has to support your claim (he'll have a ton of paperwork to submit on your behalf), and you have to carefully answer all the questions put to you, either in writing, or orally (if you end up going to court, or get examined by their doctors, which often happens.) An old legal admonition can serve you well: listen carefully to the question, and answer JUST the question -- don't elaborate, don't explain. (Like, your comment, "most people can do something".) While that might be true -- many people -- even people who don't use wheelchairs! -- might do something, but is that "something" sufficient for gainful employment?

So I suggest to folks (I used to do this for a living) that you think about your WORST day(s), listen carefully to the question asked, and answer as if you were dealing with your worst day(s). Don't talk about what you do for "fun" -- because that could be construed as "potential work". Don't talk about vacations, or recreation. Just -- how you get about your day, dealing with whatever your symptoms are.

And yes, there are lots of folks who are granted SSDI, and sometimes even on the first applications, without using a wheelchair, who can walk, talk, move around, etc.

[jena1225]

Thanks CAT! That clarified it a lot. I guess my problem, and yes, it is a problem for me, is that I have a hard time giving myself a break. For example, my ""severe fatigue, pain, tremors, spasms, weakness", is not enough reason NOT to work. So, I have it in my mind that they would think the same way.

I carry around a lot of guilt, and again, I really do not know how to give myself a break. I guess it is hard to retrain the way I think...

Thanks again CAT, I will hold onto this info in case I ever really do need it.

[Raedwulf]

Over the last year or so, as my legs weaken, it is clear that my brain's ability to process new information is greatly diminished. I'm trying to learn how to create web based applications, and despite an IQ that was once at the top of the charts, I can't retain anything for more than five minutes.
Add ongoing exhaustion, headaches, occasional bowel issues, all too frequent bladder issuesFor applying for SSDI one piece of advice, keep a journal of your problems, every time your fatiged, notice you forgot something, etc.. The feds approach to disability is that anything they can not plug you in to a machine to test, does not exist, so fatige, headaches, memory problems, and such, are mostly ignored. A journal is your best chance, but that may be ignored too.

Even though I had a 5 page "residual functional capacity" report from my neuro spelling out exacty how and why I was permanently disabled, they kept denying me for many many years. When they finally did approve me it was the 1st step of a new application, right after the last appeal on what would have got me $30,000 of back pay. Somehow 3 months later I was "disabled". If anyone trys to tell you the whole system is not corrupt, don't believe them.

[lady_express_44]

The Canadian equivalent benefit is our Canada Pension Plan (CPP). The MS Society here will go through each question on the form with applicants, and are extremely well versed in the answers that they are looking for.

I received approval on my first attempt, with their assistance. Not sure if they will help out in the USA too, but it may be worth asking.

Cherie

[mmcc53]

MM - That is kind of what I mean. How does ANYONE qualify for Disabilty?

I mean, unless of course, you are more than wheechair bound (can't walk, talk, etc...) and it is obvious you cannot do any job. Otherwise, you are absolutely correct, even in a wheel chair, people can work.

So, I still do not quite understand how one does quailfy? Is the SS what you are talking about different? You can work?

I am retired on disability. I was 47 or 48 when I applied. I was approved without an appeal. I had my primary doc and neuro in agreement, and had had a neuropsych evaluation. I was using a scooter/rollator/cane to get around. I worked at a desk job. Short term memory, ability to multitask, ability to do sequential activities was shot to ****.

While I used to be excellent at logic/math, most of it requires sequential steps -- which I found almost impossible to do. At the worse point I gave up all reading because by the time I started sentence #2, I had already forgotten sentence #1. I couldn't even follow a Danielle Steel book tape.

You have to submit all your medical records for the past several years - which is one reason why EVERYONE should get copies of all tests and records -- SS will delay a decision or deny it if they don't get the paperwork sent from the doctors. It helps if you can send it with you application.

A second reason for keeping medical records as things go along is that they are frequently filled with errors, which you will want kept accurate.

If you give your doctor written info at each visit (list of symptoms, etc.) that will be in the file and can help your case down the road.

LE is correct - describe your worst day, not your best. If you are not teary by the time you fill out the form, you haven't done it correctly -- having to write down what has happened to your mind and body is very distressing.

I was on sick leave for months before I went out on disability.

A diagnosis such as MS which used to be called a "listed disease" helps too. In otherwords, a disease whose potential disability causing effects are pretty well known.

One of my daughters is also retired on disability, and she has had to refile papers every year so far. She is much worse off than me, but because she is younger, I suspect, SS chooses to excerise their right to make you reprove yourself. I have been on SS for about 6 years and have never had to refile anything.

[bafriend]

Sounds like you should definitely think about retirement. My advice is to tell no one about your plans to retire until you have all of your ducks in a row.

DO NOT GO PART TIME OR QUIT YOUR JOB THIS WILL EFFECT YOUR BENEFITS ONCE YOU DO RETIRE !!!

I found this web site to be very helpful http://www.disabilityfacts.com/

Determine company's long term and short term disability policies
Obtain physician's support and agreement to complete all necessary forms.
Read all that you can about MS and obtaining disability
Remember SSDI will not pay for 6 months
Get all medical insurance inorder before going out on leave
Use family leave first and be prepared to pay your part of all insurances
Go to the MS Society and other MS web sites for more information and resources about disability

Applying for disability is scarry, but at your age, and with your cognitive problems it won't be that hard to get disability. You just have to be well informed about the process.

Best of luck. Betty

[GardeningMSer]

Thanks to all who have responded, I have to admit that I'd prefer a working mind/body/job, but it sure sounds as if sometime this spring I will officially join the ranks of the justifiably disabled.

Being able to take naps as needed, enjoy sunshine on summer days, and not be constantly reminded of how much my brain has deteriorated will be a delight.

G

[jena1225]

Looks like I may be going on Disabilty, but through my company, which I "own". I am not on the Corp papers anymore, but mysistare is. We and our husbands run it. I am guessing that is not a bad way to start? Anyone?

It is $74 a month for the company, and I would get 60% of my pay plus any bonuses. I hate the thought of having to do it, but not sur eif I can on much longer..

[Cat Dancer]

Looks like I may be going on Disabilty, but through my company, which I "own". I am not on the Corp papers anymore, but mysistare is. We and our husbands run it. I am guessing that is not a bad way to start? Anyone?

It is $74 a month for the company, and I would get 60% of my pay plus any bonuses. I hate the thought of having to do it, but not sur eif I can on much longer..


You say you are not on the corporation papers anymore -- so you are not listed as "owner"? Are you formally an "employee"? Does your company have a formal employee manual, disability insurance, all that? If so, then you should be OK.

But if you "own" the company, and run it...are there not ways to change your situation so that you can continue to work? It's quite a different thing to be the "boss" than to be an employee, after all. (But of course I have no idea what your company does, and if indeed there are any accommodations you could do, to enable you to continue working.)

[jena1225]

I am not on the papers anymore (for credit reasons), so I am an employe. The company is looking into getting Disability just in case anyone should need it.

At this point I am able to work, just not at the capacity I was once able. I do not go into the office anymore, I work from home. However, I feel like I am declining mentally, cognitively, and physically. So, I am not sure how long it will be before I may need to do it, even from home.

Getting hard to type (tremors), so I have to take a valuim when bad, which in turn makes me tired. Along with the Percoset I need to take to keep my pain at bay.

Getting very hard for me to multi-task, as I used to be so good at it! AND, I cannot seeem to focus very long, or do reports like I used to. I feel so stupid!

I do crossword, Sudoku, cryptograms, etc.. every single day, so I cannot imagine what I might be like if I did nothing to stimulate my brain!

[mmcc53]

Jenna,

It sounds like a small company???? IT is really hard to imagine that a disability company is going to give your company a policy and then let you go out right away.

I would say that you better make sure your husband and sister stop "looking into it" and make that an absolute top priority RIGHT NOW.

60% seems to be pretty standard.

[jena1225]

It is a small company (about $1,000,000 a year). They are proceeding with it from what I just learned, and you do have to wait 90 days before anyone is able to file...

[lady_express_44]

Sometimes they will deny new a applicant on the basis of pre-existing conditions, and/or they will make you provide evidence of good health (for at least a year prior to the policy).

All things worth asking.

Cherie

[jena1225]

Yes, they have already looked into everything apparently (had meeting with Ins Agent). Pre-Ex is ok. But thanks for pointing that out :)