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When am I "disabled"?

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#1 RNwithPD

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Posted 16 August 2013 - 10:45 AM

I've been searching the forum and found some information about applying for disability, etc., but my question is how do I know when I am disabled (i.e. how do I know when the time is right to stop working and apply for disability)?

I have several reasons for asking this question:

1) I don't think there will ever be a time when my doctor says, "I don't think you should work any more."
2) I tend to think of my symptoms of not being that severe in the grand scheme of things, although I am struggling right now with severe fatigue and my motor symptoms are really starting to affect my ability to do my job.
3) I have a tendency to keep telling myself that I'm just being lazy and I need to push myself harder.
4) My job is becoming more stressful every day, and I fear that the stress is only serving to progress the disease - yet I'm not too fond of the idea of not working any more and just being a "house-husband."
5) I want to plan things as much as possible rather than just wait until they happen and wish that I had done things differently.

So, at what point do I give up the fight and apply for disability? What circumstances prompted you to stop working and/or file for disability?

Kevin

Currently age 42.  Symptomatic at age 36.  Diagnosed at age 39.  Sinemet  25/100 mg 2-tabs every 4 hrs (800-1000mg levodopa daily); carbidopa/levodopa 50/200 mg CR at bedtime; entacapone 200 mg every 4 hrs; Amantadine 100 mg 3 times/dayy; gabapentin 200 mg 2 times/day; gabapentin 400 mg at bedtime; Klonopin 0.5 mg at bedtime; Seroquel 50 mg at bedtime; Effexor 75 mg daily; Vit-D3 5000 IU daily;Vit-B Complex daily; Melatonin 3 mg at bedtime


#2 Donald Ennis

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Posted 16 August 2013 - 12:43 PM

Good questions, as for me I will never give up the fight even if I have to crawl to work using my eyelids, and slam my face into the keyboard to push the keys.

#3 RNwithPD

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Posted 16 August 2013 - 02:29 PM

Donald,

A part of me agrees with you, but another part realizes that working 12-hour shifts on a busy cardiovascular unit is not feasible long term. I have concerns about patient safety considering how fatigued I'm getting, and also that I'm letting my team down when I have to rely on others for IV starts and other skills that require manual dexterity. I also worry about the extreme stress of the job progressing my symptoms, especially when virtually all of my coworkers complain every shift about how it's affecting them - and they don't have PD. So I have this huge internal struggle between the part of me that wants to keep working at all costs, and the part that is saying at some point I'll have to throw in the towel and give up.

I had originally planned on taking lower-level positions and also cutting back to part time, but after researching how disability payments are calculated I now realize that I need to keep my income up until I go on disability.

Kevin

Currently age 42.  Symptomatic at age 36.  Diagnosed at age 39.  Sinemet  25/100 mg 2-tabs every 4 hrs (800-1000mg levodopa daily); carbidopa/levodopa 50/200 mg CR at bedtime; entacapone 200 mg every 4 hrs; Amantadine 100 mg 3 times/dayy; gabapentin 200 mg 2 times/day; gabapentin 400 mg at bedtime; Klonopin 0.5 mg at bedtime; Seroquel 50 mg at bedtime; Effexor 75 mg daily; Vit-D3 5000 IU daily;Vit-B Complex daily; Melatonin 3 mg at bedtime


#4 Beau's Mom

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Posted 16 August 2013 - 04:46 PM

Kevin,
Document with your doctor in detail all the ways your work has been affected by your PD. I know many people who have worked way longer than was healthy. The changes in lifestyle can be shocking especially with a high income, and most STD and LTD plans only pay what SSD doesn't pay. They don't let you have the total of the two. To many people this comes as a surprise. If you have good documentation and apply for disability through work before poor performance gets your fired, it is unlikely you will be denied. Also, you can ask for accommodations at work prior to going on full disability to prove you gave working your best shot. Without consistent official documentation and especially if you have no work related disability plan, you might find it difficult to get approved right away for SSD.
Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#5 Donald Ennis

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Posted 16 August 2013 - 04:47 PM

I totally understand the internal struggle of when do I actually say, "OK this is all I can do"

Both my parents also have PD, Dad was young onset DX in his mid 40's and mom was DX last year, about 11 months before my own DX.
So I can say I'm going to work forever but I have seen my dad have to give in to not working over the years until more resent he has been pretty much stuck in his wheel chair. He is 100% disabled now, however he still fights daily, you should see him shooting archery.

My Mom & Dad is my heroes when it comes to dealing with PD, Mom as a caregiver of 26+ years for my Dad and Dad for his never quite attitude.

#6 KimAgain

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Posted 16 August 2013 - 06:29 PM


I pulled the following from the SS website, I hope it helps...


The definition of disability under Social Security is different than other programs. Social Security pays only for total disability. No benefits are payable for partial disability or for short-term disability.

"Disability" under Social Security is based on your inability to work. We consider you disabled under Social Security rules if:
  • You cannot do work that you did before;
  • We decide that you cannot adjust to other work because of your medical condition(s); and
  • Your disability has lasted or is expected to last for at least one year or to result in death.

This is a strict definition of disability. Social Security program rules assume that working families have access to other resources to provide support during periods of short-term disabilities, including workers' compensation, insurance, savings and investments.



In addition to meeting our definition of disability, you must have worked long enough--and recently enough--under Social Security to qualify for disability benefits.
Social Security work credits are based on your total yearly wages or self-employment income. You can earn up to four credits each year.
The amount needed for a credit changes from year to year. In 2013, for example, you earn one credit for each $1,160 of wages or self-employment income. When you've earned $4,640, you've earned your four credits for the year.
The number of work credits you need to qualify for disability benefits depends on your age when you become disabled. Generally, you need 40 credits, 20 of which were earned in the last 10 years ending with the year you become disabled. However,younger workers may qualify with fewer credits.

IMPORTANT: Remember that whatever your age is, you must have earned the required number of work credits within a certain period ending with the time you become disabled. If you qualify now but you stop working under Social Security, you may not continue to meet the disability work requirement in the future.


To decide whether you are disabled, we use a step-by-step process involving five questions. They are:


1. Are you working?

If you are working in 2013 and your earnings average more than $1,040 a month, you generally cannot be considered disabled.
If you are not working, we go to Step 2.
2. Is your condition "severe"?


Your condition must interfere with basic work-related activities for your claim to be considered. If it does not, we will find that you are not disabled.

If your condition does interfere with basic work-related activities, we go to Step 3.

3. Is your condition found in the list of disabling conditions?

For each of the major body systems, we maintain a list of medical conditions that are so severe they automatically mean that you are disabled. If your condition is not on the list, we have to decide if it is of equal severity to a medical condition that is on the list. If it is, we will find that you are disabled. If it is not, we then go to Step 4.


4. Can you do the work you did previously?

If your condition is severe but not at the same or equal level of severity as a medical condition on the list, then we must determine if it interferes with your ability to do the work you did previously. If it does not, your claim will be denied. If it does, we proceed to Step 5.
5. Can you do any other type of work?

Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  500mg Sinemet CR daily.


#7 KimAgain

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Posted 16 August 2013 - 06:42 PM

That said, I'd have to go all Zen on you, grasshopper...

Listen to your own body and emotions, take your personal financial situation into consideration, too, and give yourself a bit of a break... there is no right answer for everyone Kevin. Just as no two patients respond the same way to medication, no two diseases progress at the same rate, or disable a person at the same rate and in the same way. It all comes down to quality of life--once you meet SS requirements (or, those of a personal disability policy), only you can decide when/if it is time to stop working. When you decide, be confident in your decision and do not ever feel poorly about it--only you can truly know how you feel.

Kim

Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  500mg Sinemet CR daily.


#8 RNwithPD

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Posted 16 August 2013 - 07:22 PM

lol, Kim! Too much Kung Fu. Very thorough response! And thank you everyone for all of your comments.

It is, as I feared, up to me to decide. I just hate making life-altering decisions. lol I don't think that I'm there yet, but I suppose that I will realize ("realise" in British) it when I do.

Kevin

Currently age 42.  Symptomatic at age 36.  Diagnosed at age 39.  Sinemet  25/100 mg 2-tabs every 4 hrs (800-1000mg levodopa daily); carbidopa/levodopa 50/200 mg CR at bedtime; entacapone 200 mg every 4 hrs; Amantadine 100 mg 3 times/dayy; gabapentin 200 mg 2 times/day; gabapentin 400 mg at bedtime; Klonopin 0.5 mg at bedtime; Seroquel 50 mg at bedtime; Effexor 75 mg daily; Vit-D3 5000 IU daily;Vit-B Complex daily; Melatonin 3 mg at bedtime


#9 Jenette

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Posted 16 August 2013 - 09:36 PM

My employer provided a long term disability benefit. My job as a corporate executive was very stressful. I found it difficult to do my job effectively. After discussion with my neurologist, she agreed to complete the paperwork to deem me disabled. I also applied for social security disability at the same time. I was fortunate to have great doctors know exactly what to put on those forms for me to qualify for both SSD and long term disability.

I have no regrets whatsoever. I keep quite busy and am able to better manage the disease without the work stress. It's a personal decision. The combination of both disability payments provide enough financial stability when combined with my husband's salary.

I also don't feel guilty collecting disability. I worked many stressful 60 hour work weeks and have earned the right to manage PD without the stress. Again, it's a personal decision. Good luck with whatever you decide

#10 citabriapilot

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Posted 17 August 2013 - 08:19 AM

I cannot help you with the disability application but do understand how you feel, especially the "am I just being lazy" part. I deal with that question every day but don't have an answer yet. I also work at a high stress job where my job performance can/could mean life or death. I am an aircraft mechanic where a failure on my part could cause an accident. I am also lucky in that I do not get paid (long story) so quitting would not affect my monetary lifestyle. I have found though that work has become harder and harder, I first cut down in hours, When I am tired I tell my boss "sorry that's all I can do" and walk off. I understand that that doesn't apply to most peoples circumstances. This summer I quit completely as working outside in the heat and sun was just too much for me to handle. I will be going back to work when it cools off. I guess what I am trying to get around to is even though it is hard to admit it isn't your laziness that is interfering: it isn't. I love my job, my very idea of who I am is built from my job. I question myself every day if I am lazy but I just don't believe I would give up on my job if I didn't have to, yet I did give it up, at least for the time being. If you feel you can no longer do your job safely you will have to back off from the job but please don't beat yourself up any more than you have to about being lazy.
Kathy

#11 christie

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Posted 18 August 2013 - 03:10 PM

http://www.youngpark...o-on-disability

-English is not my first language !

-Aged 39. Diagnosed at 35. On levodopa monotherapy (500mg daily).


#12 KimAgain

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Posted 18 August 2013 - 04:43 PM

OK, Christie, I LOVE your posts, so I've just gotta know... what is your first language??!

Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  500mg Sinemet CR daily.


#13 christie

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Posted 19 August 2013 - 02:26 AM

Kim, thank you so much ! I so love your posts too !!! My first language is Greek !!!

-English is not my first language !

-Aged 39. Diagnosed at 35. On levodopa monotherapy (500mg daily).


#14 reverett123

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Posted 19 August 2013 - 10:44 AM

If there isn't a special section of Hell just for insurance companies, then I'm going to build one when I get there.
But, in the meantime and in no particular order-
1) It is not your imagination. The game is rigged. There have been many investigations, reports, lawsuits, etc but they have so much money that they don't have to care. And if you do happen to start getting money from them, it is usually a LOAN that you have to pay back out of you first SSDI check!
2) If they ask you lot of questions when you apply, that is good. Because if they don't thereis going to be some fine print saying that they will be asking a bunch then and if any of the initial answers that you gave were wrong then you are out of luck. How bad is that? Say, for example, that when you filled out the application five years ago you disclosed that you saw a doc about hemoroidal pain five years before that on June 30. Now, ten years later your need to file a claim because of migraines. But te company discovers that you actually saw that doc ten years ago on June 29! Tough luck Bubba! I kid you not.
3) A great source of info is NeuroTalk's forum on the subject. Check out the PD forum too.
4) The system is designed to force you into bankruptcy. They figure that if you go through years of this and sell your home. your car, etc then you probably aren't lying. So, it down with your spouse and kids and make a plan that counters as much of this as possible. If sale of the house is inevitale, do it now while you are not desperate. Can your spouse work for another two years. Are you determined to put your kids through school? Make them a deal that as soon as they get throu they have to move into a support position for a couple of years. And forget that BA in Flemish Lit! We are talking about a Doctorate in Industrial Welding kids! :mrgreen:
5) The delays vary from state to state and the appeals process is actually handled by a different private contractor for each state. So the average wait can vary tremendously between adjoining states! You can possibly handle this the way that I did. Once everyone agreed that I had PD and the machinery was turning slowly and had been for four months, I wrote the LOCAL office of my Congressman and asked for his help. It is important that you work with the local rather than the DC folks. The former have time for you. It is what they do. I explained that it had been agreed by everyone that I had PD and that I was not going to get better and that the only question was when did I qualify. I explained the impact of the delays and so on. And I asked for his help in breaking the logjam. I also, and this is important, emhasized that I was not asking him to intervene in the evaluation of my claim but, rather, I was asking him to make a phone call and get my file moving. It was amazing. Within two weeks a very apologetic woman called to apologize and let me know that my claim was being moved along and in less than another month I received my first check. Use the system. Those private contractors are riding a cash cow and if The Man calls to even politely ask for information on your file, you suddenly become an important person. Democracy in action. :mrgreen:

#15 RNwithPD

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Posted 19 August 2013 - 01:43 PM

Yeah...I learned about the democratic system while I was helping my dad get an increase in his VA benefits due to having been a POW. Brick walls disappear without so much as a puff of smoke when a politician gets involved. Thanks for all of the advice.

Kevin

Currently age 42.  Symptomatic at age 36.  Diagnosed at age 39.  Sinemet  25/100 mg 2-tabs every 4 hrs (800-1000mg levodopa daily); carbidopa/levodopa 50/200 mg CR at bedtime; entacapone 200 mg every 4 hrs; Amantadine 100 mg 3 times/dayy; gabapentin 200 mg 2 times/day; gabapentin 400 mg at bedtime; Klonopin 0.5 mg at bedtime; Seroquel 50 mg at bedtime; Effexor 75 mg daily; Vit-D3 5000 IU daily;Vit-B Complex daily; Melatonin 3 mg at bedtime






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