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stump

For those on a disability retirement, a few questions

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stump    452

Had a fun night with my hunting buddies last night.  Got all the gear sorted and returned to its proper owner.  The one that owns an airplane was putting a cabin heater in so we came by to check out the handiwork.  When I got home my wife was still awake so we had a chance to chat for a while.  

 

My wife wanted to me to ask you folks about the process you went through to go out on a disability retirement.  Everything from convincing your employer that you needed to stop working to the fight with both the disability insurance carrier and Social Security to get approved for benefits.
 
She's guessing 3-10 years before I'd need to do the same.  Depending on how hard it is to get approved for disability benefits.  She said she's starting to see some typical PD related cognitive issues along with a lot of fatigue compared to "normal" for me.  
 
At my next appointment with the neurologist my wife will finally be able to come too.  That will give her a chance to raise any issues she's seeing, along with making sure that everything that could impact eventual retirement gets documented.  We're also planning to talk to an employment lawyer to make sure we do everything right so that when the time comes we minimize potential problems.
 
Beyond all that, any tips or advice on what to do over the next however many years to make sure the process is as smooth as possible.
 
And Patriot - yes, I'll be continuing to exercise and live my life and not worry too much about this.

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Beau's Mom    1,049

Hi, Stump. I have experience with this. I have SSDI and Long Term Disability through my employer. Do you have any Short or Long Term Disability insurance from your employer? That would have to be used first.

 

For any disability, at every appointment, have your MDS document how your PD is affecting your ability to do your job. Document this yourself as well. This information will become important especially for SSDI. For example, if you are more symptomatic after a full day of work, write that down. If stress at work makes your symptoms worse, document the symptoms. If it becomes impossible to complete certain job functions or if your employer makes special accommodations for you, write down the date and the accommodation. Include non-motor symptoms such as brain fog, anxiety, and depression, too.

 

There is a website called Patients Like Me that you can use to keep track of symptoms, medications, and even your UPDRS. While I don't like to obsess about every tiny change, it is quite helpful to answer the questions every month or so because you can print out graphs and reports that will show progression over time. They even have a report you can print out to take to your MDS appointments. It works better for me than writing it all down or thinking I will remember it.

 

Let me know if you have STD or LTD or if you'll only be counting on SSDI and I can tell you how the entire process worked for me.

 

Dianne

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stump    452

I have STD through work that's good for 100% of base pay for 16 weeks.  Then that will convert to LTD at 60% of base pay which will then last until the first of reaching age 65, no longer being disabled, or death occurs.  These policies are provided by my employer as a paid for benefit.  That means the income from them will be taxable.  Any money I get from SSDI will be deducted from that benefit.  It's unclear if family benefits from SSDI (DW until my youngest is 16 and the kids until they're 18 get 50% of my SSDI each, up to 180% of my benefit in aggregate) would also reduce my LTD benefits, but I don't think so.

 

I also have a private LTD policy that, thankfully, is worth about 94% of my current salary.  I got that policy when I was not only making a lot more money than now (2008, so pre-recession) but also at that time didn't have any employer provided benefits.  For a variety of reasons I held onto that policy for quite a few years.  Several times I considered cancelling it, or reducing the amount it will pay to save on premiums, but am very glad that I never did that.  Especially a couple years ago when symptoms were starting up.  Anyway, I have checked and confirmed that policy is NOT reduced by SSDI, or my employer's LTD.  It also will not have any effect on my benefits from my employers policy.  Because I pay for this policy with after tax dollars the benefits from it will be tax-free.

 

So, I have the rare, and fortunate, position of standing to make 154% of my current income once I am disabled, and only 39% of that total amount will even be taxable.  I definitely am blessed in that regard to not have any stress over finances should I need to retire on disability.

 

I will definitely check out Patients Like Me.  Do you think that is something to start using now, or would it be better to wait until I think I'm getting closer to filing for disability?  In other words, is it going to add value to the process when you are still more then a couple years away from needing to file?

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Beau's Mom    1,049

You are indeed fortunate financially.

 

Absolutely start now with Patients Like Me. That way you will have a record of how things have changed over time when you do need it. Mine goes back to 2012 and reflects some rough times as well as the good times.

 

Dianne

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Quietstill    450

Hi Stump,

One thing to add.  SSDI is fairly easy and self explanatory.  At least it was for us.  The insurance policies are a different matter.  Read them obsessively, and then get a lawyer to read over the contracts.  There are a lot of employment lawyers who will do that fairly cheaply to give you an opinion.  Do it.  Our example was we had a 60 day window to apply.  The employer MUST send in a form for the application.  Problem was HR doesn't have the form, didn't know about the form.  They thought sending a letter informing the Ins Co would suffice.  Hah!  The HR had one form, which did have to be sent in, but it had to be sent with a 30 page form that only the insurance company had, and had to be requested in advance.  All within the 60 days. 

 

The devil is in the details.  You only get one shot, no do-overs with Ins Co. 

 

eta:  I found out about the second form because I asked for the full ins policy from the Co, rather than the smaller 'what you need to know about your LTD policy' that they provide.  The 2 documents were interestingly different in subtle ways.  The need for that second form was one of them.  HR didn't know about it.

Edited by Quietstill
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afroney    124

I have STD through work that's good for 100% of base pay for 16 weeks. Then that will convert to LTD at 60% of base pay which will then last until the first of reaching age 65, no longer being disabled, or death occurs. These policies are provided by my employer as a paid for benefit. That means the income from them will be taxable. Any money I get from SSDI will be deducted from that benefit. It's unclear if family benefits from SSDI (DW until my youngest is 16 and the kids until they're 18 get 50% of my SSDI each, up to 180% of my benefit in aggregate) would also reduce my LTD benefits, but I don't think so.

 

I also have a private LTD policy that, thankfully, is worth about 94% of my current salary. I got that policy when I was not only making a lot more money than now (2008, so pre-recession) but also at that time didn't have any employer provided benefits. For a variety of reasons I held onto that policy for quite a few years. Several times I considered cancelling it, or reducing the amount it will pay to save on premiums, but am very glad that I never did that. Especially a couple years ago when symptoms were starting up. Anyway, I have checked and confirmed that policy is NOT reduced by SSDI, or my employer's LTD. It also will not have any effect on my benefits from my employers policy. Because I pay for this policy with after tax dollars the benefits from it will be tax-free.

 

So, I have the rare, and fortunate, position of standing to make 154% of my current income once I am disabled, and only 39% of that total amount will even be taxable. I definitely am blessed in that regard to not have any stress over finances should I need to retire on disability.

 

I will definitely check out Patients Like Me. Do you think that is something to start using now, or would it be better to wait until I think I'm getting closer to filing for disability? In other words, is it going to add value to the process when you are still more then a couple years away from needing to file?

Very good that you have the private policy.

 

I was approved for LTD and SSDI this summer. The SSDI process was very easy. I filled out the application and my MDS did his end. My application was fast tracked, due to the severe nature of my PD and the approval decision was made within a few weeks.

 

The LTD folks were a bit tougher. Unum is the administrator of my former employers plan. They drug their heels a bit, but after getting SSDI approval - they ultimately made the decision to approve as well.

 

Medical documentation and your doctor's opinion is key with both SSDI and LTD policies. I was told by the SSA Ajudicator that documented stage 3 PD (I'm mid stage 3) pretty much guarantees an award from the SSA. The fact that I have a repeated fall history with broken bones and need a cane to walk sealed the deal with Unum.

 

Check your LTD policy document. Mine is "own occupation", so if I can't do one of the essential duties of that occupation safely, UNUM determines I'm disabled. My percentage was bumped from 60 to 70% as well since I have to rely on a caretaker to do some of my daily living activities. Your plan may also include a similar stipulation.

 

The SSA is designed to be unbiased in their decisions, but LTD administrators are the opposite. It seemed like UNUM was trying everything in its power to deny my claim, including sending a bumbling idiot of a PI to observe me.

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noah    66

I actually was surprised at how easy it was. The hardest part was getting the doc to complete the paper work(shes not very organized)

My company contracts with a company that specializes in this.  After a few calls answering a bunch of questions, they applied for me and within a few weeks I was approved!!

I was dreading it but it worked out great!!

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make  sure you have a neuro who will work with you since what they put in your medical records is the most important part of ssdi, i think you said you were seeing a neuo at EVERGREEN, I think they're all clued in to helping patients get SSDI so i'd contact the neuro/assistant there and ask if they provide any guidance.  i'm embarrassed to say i am the poster child for screwing up getting SSDI, I was denied after the 3rd step, appearing before a judge.  i had to prove i was disabled 2 years earlier which i couldn't because i saw my neuro every 1-2 years for a short exam and  had nothing in his records that said i was disabled,, even after 12 years from my  diagnosis. he also never brought up the subject, my current neuro did.   didn't help that when i appeared before the judge i looked/sounded like i didn't have pd.  i  was also self-employed - just me, rarely saw customers,  lived alone and responded so well to l-dopa that i could easily hide my pd.  dumb. i hired a lawyer to do everything from the start knowing i had a difficult case. i'm in the seattle area and i have nothing but praise for the SS employees except for the judge.  he accepted the opinion from a vocational specialist that i could have gotten employment as a computer technician.  who would hired me 12 years from my pd diagnosis?  didn't matter  to the SSDI court, my fate was sealed  when i answered "yes" did i ever update the software on a customer's computer or ever put a memory chip into a computer.  my attorney who had been practicing in disability for many years had never had to go to court with  a pd patient  before, she assumed i would get disability.

 

just another tidbit, ssdi is totally seperate benefit from SOCIAL SECURITY.  You can never lose your SS benefit.   The SSDI benefit is an insurance policy  and   if you stop working the clock starts ticking on how much time you HAVE to file. i stopped working in 2012 but didn't file  until 2014, i thought i had  to file some late tax returns which i really didn't have to.  So my cuttoff date for declaring i was disabled was 2012 based on the formula they use.  oh well.   

 

the other aspect of disability is you qualify for medicare in 18months?   thank god  obamacare kicked in otherwise i'd  be paying a fortune for health insurance.

 

my advice is learn the ropes in applying for ssdi as soon as you can.  for  example, being self-employed i tried to report  the least amount of income that i legally could.  i worked by myself for 10 years after my diagnosis, i supported my customers over the internet so mobility wasn't an issue, yet i would have been better off paying more SS taxes knowing i was going to need SSDI sooner than later. plus, based on the SSDI formula for determining eligibility and benefits, you might be better off quitting work sooner especially if you are self-employed and expect your income to go down, there is a 5year sliding window on calculating your benefits.    

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stump    452

I do see my MDS at Evergreen. My next appointment is in a week and a half. SWMBO will be coming to that appointment too so we'll be discussing these issues for sure. I did cut back from 3x per year to 2x per year due to the high deductible but I definitely won't cut back more than that.

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too bad they can't do telemedicine, seems like a nurse familiar with pd or a neurologist could do what the mds instructs them to do over skype  or whatever they use.  wonder what people living in really remote areas  do.  as a patient i'd probably want to be person to person since traffic is so bad in that area.  i did before and after updrs testing and it was done by an experienced nurse,. there was a student nurse there for training.

 

http://www.uwmedicine.org/referrals/telehealth-services

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adams234    238

As a side note. I have been doing a trial study for telemedicine visits. I personally don't like them. There is no way for the doctor to test rigidity and balance. Seems to impersonal.

 

I understand the need because of travel and lack of accessibility for some to see a good doc, for my money I would rather be seen in person.  

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DanC33    31

I was fortunate enough to have Prudential my LTD from my work. They hired Allsup to handle everything and I was approved first shot. Though they did say having all of my medical records going back to the start of my problems helped.  

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stump    452

Well, dagnabbit.  DW won't be coming to the appointment next week.  She forgot that was the say when she confirmed a violin lesson for Thing 1.  Can't cancel now without still paying for it.  Guess we'll have to wait until the next appointment.

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DaynaE    6

I was just diagnosed with PD, and had my first Physical Therapy appointment today.

The PT did an assessment and I scored 42 out of 56 on the Berg Balance scale.

 

Interpretation:​

41-56 =​ independent

​21-40 = walking with assistance

​0 –20 = wheelchair bound

 

So, I scored on the low end of independent. Although I was just seen by my

Neurologist January 25, 2017 and Diagnosed February 24th, many of my

non-motor symptoms go back years, and I have been able to document my

hand and leg tremors going back three years, based on old Facebook posts.

 

My job is a server in a chain restaurant where we also have to dance every hour

for a short period. My ability to dance, and especially do a 360 turn (impossible

at this point, without falling) is extremely hindered. My hands have problems

grasping things, and separating paper napkins to lay on the table for drinks. I

have trouble carrying plates and trays, get dizzy while carrying large trays of food,

and I am concerned I will no longer be able to do my job efficiently within the

next year. I am 51 years of age and have been a server for 8-1/2 years. I was in

an office environment prior to that, before being downsized. I have no college education

and no real other job prospects I can see at my age that would not require me on my

feet and moving around a lot.

 

A friend said I should attempt to file for disability now, even though I am still working.

I am not sure if that would be the correct thing to do or not. However, I fear my PD is

farther long than most who have been just diagnosed, based on my symptoms

(38 total now and counting), severity of mobility issues and dizziness, as well as the poor

score on the PT test. I honestly see myself at Stage 3 based on all that. The movement

issues have gotten extremely worse since last June. Especially with my abilty to do the

foot moves required in the line dances at work.... songs I could dance to three years ago are

next to impossible to do now, and my thinking, memory and other brain difficulties are also

greatly affecting my work. Any guidance would be appreciated. Thank you.

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stump    452

I can't help you too much with if/when to file for disability.  There are so many variables about the only thing I can really recommend would be for you to perhaps make an appointment for a consultation with a lawyer that specializes in employment law and/or disability law.  

 

The other thing would be to request a neuropsychological exam.  Since it sounds like physically you are close to qualifying for disability, if the results of the neuropsychological exam show substantial cognitive deficits that might help with justifying the disability application.

 

The hard part about SSDI at least is that you can't apply until you quit working.  If you are still working you must not be disabled, right?  At least that's the thinking of the bureaucrats.  But, it takes a while to get the money from SSDI flowing, and if you don't have a short term disability benefit from work it can be tough to get by between the time you quit and the time the SSDI checks start to hit your account.  That said, if you get approved they will pay you the back-due benefits so it's not like you're forever out the money for that time period.

 

I'm guessing not, but as it's a larger chain restaurant, maybe you do, but do you have any disability insurance from your employer?  Or do you have the fortune of having a private policy?  Although most policies won't let you double dip between the insurance and SSDI (and any back payments by SSDI will get scarfed by them most of the time) those policies do at least give you the bridge between leaving work and starting SSDI benefits, plus they usually give you more total income than SSDI alone.  E.g. if your insurance DI works out to $2000/month, and SSDI benefits are $1400/month, while you still will only $2000 total ($1400 SSDI plus the $600 difference from the insurance) but you do at least get that from day 1.

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DaynaE    6

Hi Stump! Thanks for your reply. I do not have any type of disability insurance from my employer. Would my Neuro's office handle the neuropsych exam?

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stump    452

Your neuro will refer you to a neuropsychologist for the exam.  In my case (I have my npsy exam coming up in early April) they're in the same building and part of the same center.  But in your case they might have to send you elsewhere.

 

Even if, between medication optimization and exercise/PT, you are able to hold off from a disability retirement it would still be a good idea to get a npsy exam done.  It gives a baseline that can then be compared against in later years to show how you have progressed.  It's also one of the exams that can be crucial to a disability claim being successful.

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Gardener    193

Hi DayneE,

 

I can understand how restaurant work could be difficult at any stage of PD and especially for a server.  SSDI will look at your previous work to see if it might be possible for you to perform a less physical job.  Have you thought about trying office or some other type of work?  When I was finally dx, I had already been off work for a few years as a full-time caregiver for a family member.  My SSD benefit window to apply was to expire in three months so I had to apply.  It took a full three years to get approved.  My age (58 at the time) helped my case.  My attorney said that the Judge would take that into consideration.  All in all, it was a very frustrating and sometimes humiliating experience.  In retrospect, I think I would have been happier spending those early years engaged in something more productive and enjoyable.  When your life is full and balanced, you have less time to dwell on the disease.  Best wishes, Gardener

Edited by Gardener

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gardner brought up an excellent point, that your SSDI benefit is based on a 5year employment window and can go down to zero whereas your SS benefit can never go down even if you stop work.   if you think you can work longer at your current job or any other job and don't have to apply right away then you should determine if your benefit will go up significantly if you continue to work or GO DOWN.   i found the local SS office very helpful at least where i live, it's worth visiting them for advice, believe it or not they are on your  side.

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adams234    238

If you set up an account https://www.ssa.gov/myaccount/ you can use the tools to get an estimate on what you disability would be if you filed and were approved. I keep an eye on mine, since diagnosis mine has gone up over the last few years because I have a stable job with pay raises. My goal is to keep working till I can't or my MDS says I should think about stopping.

 

There is also a tool to see if you might qualify for SSDI.

 

Good luck. I manage a busy nursing home kitchen that has mini kitchens on 5 different floors. I think once you optimize you medication and get PT going you might feel better than you think. I was shocked at how much better I felt once I started meds and got them dialed in. Was like stepping back 5 to 10 years. I still deal with fatigue in the after noon but this is an issue almost all parkies deal with.

 

Good luck.

Blessings Adam

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swva    81

I agree with Adam. Try to get the meds dialed in before you decide you can't work. I know that I was talking with a co-worker with PD at the time of my diagnosis, and I said I didn't think I could keep working if I progressed as fast as I did the two months prior to my diagnosis. He said not to write myself off too quickly, because he had been working for about 13 years since his diagnosis. After a couple of months on C/L, I began to feel better and even though I have had to increase my dosage a little, I feel almost as good as I did prior to my diagnosis.

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