Disability benefits: I am one of those who... - Cure Parkinson's

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Disability benefits

Susie01 profile image
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I am one of those who took 7 yrs. to be diagnosed. By the time I was diagnosed, I was in stage II. I am an RN and was let go from one job for what I

now know to be cognitive changes that occur with PD. I also had a constant tremor, the job required me to draw blood, and they continuied to MAKE me draw the blood! I can only imagine the fear those patients had of me with me hands shaking out of control.

It was about six months later that I was finally diagnosed, first by myself. This gives you an idea of how much the medical professionals know about PD!

I am a single mom and only have child support at this time. I kept looking and finally found a job I thought I could do with the PD. It was a desk job, but looking back was a recipe for disaster. It was an intake center, the room was maybe 10X10 with 4 desk back to back, numerous computer screens around the room that we had to monitor and 2 screens on each desk that was also for input and monitoring the various hospitals we covered and 2 phones on the desk that rang without ceasing, oh, and the lights were turned out in the room.

Obviously, I was only able to keep up for a couple of weeks before I was right back to where I started prior to medication. My hands were shaking, I had virtigo, crashed on my days off and had another "episode" as I call them where I had severe tremors and could not walk without falling,. My doc prescribed additional meds, but it did not work. I was let go after 6 wks.

I was told by a Disability Attorney that I would probably be denied 2-3 times, when I got the third denial to come back and it would be taken to Disability Court which is already booked a year in advance.

I do not know how I need to respond on the appeal, does anyone have pointers? The problem is, when I see someone who is an advocate, they look at me and think that I am fine. As my doctor told me, we all start out with a certain number of brain cells, that I "obviously" had more than the average so can still appear to be "normal" function. Though I have times when I do things I have no recollection of or cannot remember how to do something I have done thousands of times! Then of course I also have the tremors in all extremities and the periods of times when I cannot walk without falling and cannot even hold a glass or a utensil to feed myself. Lest it scare you, those "episodes" do not occur so frequently with meds and are usually when I have overdone it physically or am under a lot of stress.

The basis of my question, what have you experienced when filing for disability and what "new" information did you use in your appeal. I have the documents from each of my prior employers as to why they let me go, thought that would be helpful. Do I need to have friends and family write what they have seen during those "episodes" when I cannot function at all?

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Susie01 profile image
Susie01
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20 Replies

Talk to another lawyer. One who specializes in SSDI claims. The SS dep't policy is obviously to turn down everyone on the first go around.

Susie01 profile image
Susie01

How do I find someone who specializes in SSDI? The one I saw was highly recommended and specialized in disability. There again, when I was sitting in her office I looked "fine". She saw that I was organized with all of my information and thought I had a handle on it and could do it myself. Thankfully, I have always been very organized, which is a life saver now with the PD.

Joealt profile image
Joealt

The way I understand it, if you have enough "work credits" you should be able to collect Disability. Appeal.

Joealt profile image
Joealt in reply toJoealt

I was a "Mr Mom" and got denied. Warn your friends!!

You to find a disability lawyer get a note or from your doctor to give to your lawyer . He will get paid when you get your payment from SS and you can get money for your child if their under 18 I got that also. Also with the way the economy is f###ed up their turning down most of them .

It also helps when you go to the lawyer bring all your meds to that your taken a crap load to function .

What state are you in ?

Susie01 profile image
Susie01

I am in Tennessee. After I saw the attorney, I made an appointment with the SS Dept. The person I worked with there entered all of my MD info since 2004 when my symptoms were first documented in a visit to my Internist. All of my records were sent to Nashville. They also have a list of all my meds, on paper I look like a walking time bomb!

Joe, I was an at home mother and homeschooled my son until I was divorced, so I know how that works against me. If my ex dropped dead, or becomes 62 I would get his benefits which are about 4X more than mine, and I have warned other "at home moms and dads". Have yourself paid like anyone who did your job would be, I.e. Nannhy, CFO, etc...Have it as taxable income.

Yes, the attorney told me that there is a huge backlog with the economy. There are a lot of people with disabilities who had continued to work and have now been laid off and are applying.

If they were to go back to 2004, I had both my son and my daughter. My son is now 18 so would not be counted, my daughter is 16. The person I worked with at SS Dept said they would go back to 2004, though I have talked to other people who told me they did not.

Thanks for your input.

par004 profile image
par004

Check out ALLSUP,Inc (allsupinc.com). They specialize in SSD. I used them and was happy with their service about 8 years ago. I did not meet them face-to-face but did everything online or by mail. Yes they charge a fee which is regulated by SS.

Good luck

Oh I forgot not sure but you should also go on youngparkinsons.org they have a vast amount of info for young people with PD.

PeggyT profile image
PeggyT

I don't have an answer...just another question. When I was still teaching, sometimes I'd doze off during meetings, due to a combination of Sinemet, Requip and OTC sinus med. In the middle of the year, my supervisor informed me that I'd be moved to another teaching position the following year because she was "concerned about my health" and because of the dozing off. I explained about the temporary OTC meds, informed her that my Requip level was being adjusted, and requested that my meetings be held in the morning rather than late afternoon when everybody else's as well as my energy level was lower. She took no heed to any of these items, and consequently I retired the following year rather than take an assignment that would be much more stressful and for which I was less qualified or trained. Do I have grounds to file for disability? Is it too late to file---this was 3 years ago. Was my treatment discrimnatory? I think it was, but I was just too shocked and distraught to pursue it at the time.

Susie01 profile image
Susie01

Thanks Peggy,

From what I know you could still file for SS disability, I have no idea about the school system itself.

I felt my employer did discriminate againse me. I have had it with lawyers and the court system after my divorce. I did not care to go through any other legal process. I did go and meet with a disability advocate who felt it was discrimination, they are to make any "reasonable" accomadation. It that case, for me it would have been to put me on 2nd shift, that was what I was hired for. I tend to do better as the day goes on and can be in a blurr in the morning. The other item would have been to turn the lights on in the room or give me a computer space that was in a lighted area. It would have made a huge difference for me. But what is done is done!

If I were you, I would check things out, never hurts but it might help!

parkey profile image
parkey

yes allsup is the way to go

DANIEL profile image
DANIEL

Others told me that you get denied the first time out so I hired those that helped with denied claims. Waste of my money. I was granted the first time out. At the time I wasn't as bad as I am now. Or so I thought. Would love to go back to that time with the systoms, minus the dystonia. get a lawyer.

Susie01 profile image
Susie01

What stage were you when you filed? I am already stage II with some stage III features. I may check with another attorney, the one I talked with seemed to think I was together enough to do it myself and come back when I got the 3rd denial.

I do think it is harder to get benefits with the economy in the mess that it is in.

Thanks again, Susie

krpnova profile image
krpnova

I guess that I am one of the lucky ones. I work at Lowes and they offered me 60% of my salary and fully paid medical insurance till I turn 65. I still want to work ,so I have not decided what to do yet.

Susie01 profile image
Susie01

Wow, that is amazing! And I worked as a nurse in a hospital and got a few months of medical leave...If you are still wanting to work, you could check with SS Dept and see how much you can make each year. I think it is around $9,000/yr. for those on regular disability, Lowes may have a different policy. How long did you work for them?

Another avenue might be volunteer work. I live near several Civil War battle sites. A good friend of mine started volunteering there when she was laid off of her job and she loves it!

mrsaleem profile image
mrsaleem

Hi. Your question about disability.. How much disabilty you will get enough to support your family. I will suggest you one thing , you are Rn nurse try to get a job in doctor office or do adminstration job..

DeParkiePoet profile image
DeParkiePoet

I receive disability support from Comcast for one year, ends in May 2012. Try to get a job in a large federal? municipal hospital, they will give you benefits, short and long term after 6 - 12 months. You're right they don't know that about PD, I have to see my Neuro, internist, PT, or PA every month to satisfy their curiousity and keep them in paperwork. Their job is to deny, deny and delay so you have to be persistent. My attorney in Florida told me the same thing that yours did. Good Luck. jmc9696@gmail.com

Susie01 profile image
Susie01

Hello Jomc9696

The problem is I was home with my children for several years before the divorce. I had been with the same company for years before staying home. I was able to find a job, told the person who hired me that I had PD, they saw me on meds and not stressed out and thought I was fine. Once I began working full time, my symptoms excalated. They had me take my job description to my neuro and get his opinion of whether or not I could do the job and he said "No". He did not feel that I could work at all, especially as a nurse. I have applied for lots of small time jobs, my attorney told me I had to tell them I have PD upfront, no one has even called me for an interview...

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