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Monday, February 8, 2016

Disability Review: Do You STILL Have Parkinson's?

The last job I had was back in 2003. My step-daughter got me a job as a banquet server at the country club where she worked. If it hadn't been for her, they'd have fired me the first day. My hands shook too much to carry trays of food, pour wine or even refill the guests water glasses. I was a glorified busboy and not even good at that. I quit, much to their relief, after about three months.

I had given up trying to work in banking or do any kind of office work the year before. I could no longer write, my right hand couldn't use a computer mouse, and the pain in my upper back from trying to use my right hand was excruciating. As much as I wanted to work, I was physically unable to. I would have applied for disability benefits back then, but was told, "No diagnosis, no disability."

So, I kept going from Doctor to Doctor and finally applied for Social Security Disability on the same day my Parkinson's disease diagnosis was confirmed, September 11, 2007. My Wonderful Husband filled out pages and pages of forms because my writing was illegible. Medical records were requested from all the Doctors I'd seen since 1999, when my first motor symptoms became noticeable and began to interfere with my ability to work. 

Stress makes Parkinson's symptoms worse and there is nothing more stressful than dealing with government agencies. We filled out all their forms, attached copies of all the medical records I could get my hands on, and waited.

The first denial letter came, with instructions on how to appeal their decision. We appealed, added more medical records, statements from past employers and waited. The second denial letter came, with instructions on how to appeal for a judicial hearing. I contacted an attorney and appealed, and waited. My hearing before a judge finally happened in April of 2009, and the judge ruled in my favor. She was friends with former US Attorney General Janet Reno, and had watched her Parkinson's symptoms progress, so she understood the disease. This is the end of the story, right? Wrong.

In February of 2012, I get my first Disability Update Report form. They want to make sure I am still disabled. They want to know if I am better or worse, and want me to list ALL the medical appointments I've had for the previous two years. More stress. Fortunately, I have a file with all my medical records in it, so by the time all my appointments had been listed, there were 27 of them. A few weeks later, I received a "We've decided that we don't need to review your medical records as this time" letter.


In October of 2014, the second Disability Update Report form comes in the mail. It is a carbon copy of the first one. We learned after the first one to keep all my appointments recorded on a computer file. Having easy access to a list reduces the stress for both of us. This time, we list 50 appointments and 7 surgeries. A few weeks later, I get the "no medical review will be necessary" letter. It's pretty obvious, I am NOT getting better and will NOT get better in the future.


Parkinson's is on Social Security's official list of disabling conditions considered severe enough to qualify someone for disability benefits. "Parkinsonian syndrome with the following signs: Significant rigidity, bradykinesia, or tremor in two extremities, which, singly or in combination, result in sustained disturbance of gross and dexterous movements, or gait and station." Maybe someone should also inform Social Security that Parkinson's is a chronic, progressive and degenerative disease with no cure.

I am writing this story to help all the others with Parkinson's disease who are receiving Social Security Disability benefits. You will most likely receive these Update Forms every few years, so start keeping a list of ALL your medical appointments to reduce your stress. 

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35 comments:

  1. Bev, just tell them that you shook it right out of you!
    Carl

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  2. FOR GOODNESS SAKES! Don't people know anything? Or is it just a question that must be asked because those who ask the questions cannot be bothered to have any basic knowledge on these matters?
    Christine

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  3. Here, in Australia, they tried to say Parkinson's is temporary. Morons !
    Drew

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  4. Wow. Bureaucratic ignorance is mind numbing.
    Bill

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  5. Do they really ask that?
    Michelle

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    1. Yes they do - my son has CP, one of those idiots actually said "after reviewing his medical records they expected him to have a "full recovery" in 2 yrs" So I called them Said we didn't want to wait the 2 yrs. That if indeed it was possible we wanted it to happen asap They never pulled that crap again. Sandy

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  6. Yes. I am friends with a blind couple and they must prove every two years to their housing authority that they are still blind! Pat

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  7. Seriously?? OMG, stupid question!!!
    Carol

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  8. I get the dreaded letter every year here in Canada. One day, I'd love to be able to say...I'm cured. JIll

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  9. How can they ask such a stupid question? Parkinson's does not go away. I still have it and it's been three years. I have new meds which is helping control the shakes not make it go away. Sandy

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  10. M here: Bless your heart. My husband has Parkinson's too, but he is 80 and was diagnosed about 5 years ago. There is a big difference between early onset Parkinson's at your age and regular Parkinson's at his age. Good luck to you - you clearly deserve to have the disability. They should send someone out to the house if they have any doubts!!! My husband was an artist (hobby type), but he's had to give up painting because of shaking so much.

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  11. Just received a letter from ssi that ask " are you better from Parkinson's and has it improved? "We must evaluate your case and determine if you are able to resume Normal activity. We will contact you after the board has reviewed your case,
    I have had Parkinson's for 7 year's been to Emory, medical college of Ga, regular neurologists appointments, and on cane and walker due to numerous fall's. WHAT IS WRONG WITH THESE PEOPLE ?
    Robert

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  12. Is this the kind of thing Parkinson's Action Network can "fix"?
    Christine

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    Replies
    1. No a Parkinson's handicap lawyer. A good one at that or a lot of paper work like Bev has done and lots of patients.

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  13. I get this letter yearly or every other year at a minimum, since I have been dx in 2003!
    Mel

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  14. Well that's a stupid question! Do you still have Parkinson's? It's not like it can be cured. Seriously that's stupid! I would write him and be like no my Parkinson's is completely gone I just shake for no reason! What can I say, I can be extremely sarcastic when I want to be. Cathy

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  15. I don't want to come across as insensitive, but this made me laugh. The person who sent this letter is obviously an idiot. Amy

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  16. Please let all of us know when you don't have it anymore!! lol
    Cheryl

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  17. Well, when they find the cure, the forms will be appropriate! Lisa

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    Replies
    1. Good One! And that's the goal!!!
      Mellany

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  18. I had a long term disability plan from an employer. When I got my SSDI approved with a lawyer, they wanted the money they paid me, back. Seems it was just a loan. They still had to pay me 200.00 a month. After 18 months I got a letter saying that I was no longer disabled and that my Parkinsons had improved. I called and explained to them that it is a progressive disease and that I had not gotten better but worse. They said their qualifications were different from Social Security and stopped my payments So I am the first one to get better.
    Michael

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  19. I just got my yearly letter from my private insurer. They wanted to be sure that I hadn't experienced a miraculous cure. They obviously couldn't take my word for it, so I had to get a full medical records dump from my GP, my neurologist, my neurosurgeon, my urologist and my gastroenterologist. I'm surprised they didn't want an affidavit from my dog, verifying that on our walks together, she has to wait for me sometimes.

    These are the same bureaucrats who approved my DBS surgery as medically necessary and part of the standard of care for PD, and then repeatedly denied claims for turning the system on and tuning it, claiming that this was somehow "experimental." Kind of like the bank approving your mortgage, but only if you don't buy a house.

    The standard answer is , "NO...now what was it that you asked?"
    Corey

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  20. It's sad that they can't get this right when Parkinson's has been in the top 15 causes of death in every state. I'm at the point where they require proof every 5 to 7 years.
    Lawrence

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  21. I was diagnosed in 1992 but didn't apply for disability until 2008 when I was 59. I was approved on the first try but I was told it went through so easily because at 59 no one would hire me anyway. What a nice thing to say, right?

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  22. It's hysterical! I remember when I was applying. I was rejected once and then appealed. Received more paperwork to fill out and one of the questions was ... Has your symptoms have gotten better or worse? What! Seriously! Then you have people who don't understand anything about PD and think it's will go away cuz you are having DBS! Anna

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  23. I've been denied twice also. I moved out of kaiser ' s service area into an area with limited knowledgeable providers but am going to a new neurologist in April. I'm only 55 and am happy with just my pension so didn't bother with appealing either time. Btw I was told PD didn't qualify as an automatic YES.

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  24. I had to fill these out every few years too--husband diagnosed at 29, on disability at 34, now 57 and still filling them out.

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  25. Bev, when my husband was asked that question in an interview, I said: "Oh, do you know of a cure? Please, tell us"
    Nothing more was said....
    Terese

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  26. What the hell, do these people not realise that Parkinson's is a deteriorating illness, there is no cure!
    Julian

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  27. Somebody is dumber than a bag of rocks! We would all be celebrating if we had a cure for this disease.
    Sandy

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  28. Yes those in our social services have no darn idea about Parkinson's but in my case I was able to avoid all the crap that younger people are put through. After my battle of nearly six years, I was diagnosed in 2016 with PD when I was 65yrs, 65 being the magical age to become an old age pensioner - hence I was able to skip the "are you still suffering from Parkinson's" questions. So when ya reach that magical age for the old age pension they just forget about you because I think that they see you as perch sitting until you fall off.
    Kev

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  29. I am waiting on my appeals hearing. In my area they no longer do the second appeal. It goes right from the initial denial to the hearing. I am a programmer and I can no longer use the mouse and I have trouble with typing. The article is helpful because there is very little information on what to expect with the social security disability process. Ken

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  30. I had the same thing happen took 3 years to get approved then a little over a year and they sent me a paper asking if I doing better, they are a big joke!!
    Linda

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