Parkinson's Movement
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Anyone have experience with getting social security disability?

I was diagnosed in my early 40's, am now 55. I still work full time in a very stressful supervisory position, plus we raise livestock & I have a part time home business. I always thought keeping busy & pushing myself was what kept me going, now that I have progressed, I realize that I need much more control & downtime & way less stress in my life, I am beyond exhausted, yet somehow cannot sleep more than 3-4 hours a night at most. I have no retirement, I need to get social security disability or we will lose everything & I cannot let that happen, so I keep pushing myself, knowing full well that I cannot do it much longer. I am both physically & mentally drained & feel like I am on the edge of a cliff. Can anyone share their experience with social security disability? What are my chances of getting it? My doctor requested that I not work over 4-6 hours a day & 3-4 days a week, but was told at work that my position required me to work full time. The only reason that I am able to still do my job, is that I have a very supportive staff that covers for me, plus I can sit most of the day & shut the door of my office when I am having PD or medication issues, which is becoming more frequent. I hope to be able to continue my home business, as it is what I love & although I don't make much money, it is very healing for me, both physically & mentally & I need to be productive or the depression will kill me. Will social security allow me to continue to work at home or would they cut my benefits? I know it won't look good that I have been working full time & am know claiming to be completely disabled, but I need to pay bills. Any advice would be greatly appreciated.

27 Replies

I lost my job in November, unable to keep up with the stress, the amount of time needed and sales requirements. Diagnosed at 42 and now 53 and planning to have dbs in March. Any help anyone can be would be great. I have been out of work for the last 90 days and we are having major financial problems.


My case and mine only!!! I was diagnosed 3 years ago at age 45. Worked for the Post Office for 21 years and I was never out sick. Very committed to my job and felt that my customers needed me to be there. If I was not there, the building would fall down. I was like that. Stress made my symptom worse and was told by far to my doctors I needed to go on disability. After fighting the good fight far to long with doctors and family I did so. First, you will need to be out of work for 5 months before they will take your claim. I filed mine on the fifth month, my wife did all the paperwork and she had documentation from all my doctors. The key here is documentation!!!!! The more you got, the better. I was approved in 6 weeks.

As far as working on disability, there are guidelines that Social Security has on that however you could be flirting with losing it if they start questioning your disability especially in today's financial atmosphere. I know that for a fact it is harder today to get disability than it was when I did just because of the financial situation the government is in today. A fact. Yes, we payed into a system to protect us in case of something like this happening but they sure are getting harder to pay up when they don't got the money.


Where are you in the world?

If in England I would recomend your first port of call to be your local Information and Support Worker from Parkinson's UK. Also, Age UK are very good at giving advice and supporting people through the daunting task of form filling.

WE recently had a talk from a benefits expert at Disability Cornwall and he gave us a few top tips:

1) Keep all the medical reports that your PD nurse and consultant send you in a folder ready to show the assessors, unlike the previous Disability Living Allowance scheme, the assessors are not obliged to seek your medical history.

2) Keep a daily diary of your ability to undertake daily tasks and the help your family members have to give you. Parkinson's has fluctuating symptoms and the assessors don't seem to have their heads around that at the moment.

3) Keep notes of your mood, anxiety levels, and other non motor symptoms.

4) Write down your sleep for each night too.

Get support filling in the form, don't do it over the telephone.

Take a friend or somebody who understands your condition to the assessment interview.

If you don't get a positive result, APPEAL. 40% of claims are being granted at appeal.

If they set a time for assessment which is before you can get up and going in the morning, request a home assessment or a different time.

Good luck and remember the Parkinson's UK website is a mine of information.


It can be very tricky... especially with your p-t home business. You'll need MD's statement that you are permanently disabled from any type of employment. If you have other conditions that compound your situation include them. Some MD's aren't very helpful... you'd think it was coming out of their own pocket.


Hi Sedona

Getting benefits is a nightmare. I had early onset at 39, I'm now 50. Had to give up work 2 years ago. Applied for ESA was assessed, scored 0 points out of a possible 35. My benefits where immediately stopped and I was told that I was completely fit for work. I appealed with the help of a great support worker from Parkinsons UK and won after a six month wait. In the meantime I was trying to survive on £71 per week. They backdated my money but that is beside the point.

I also applied for DLA, again with help but again my claim was rejected. I re-applied went to tribunal at the local court, I won the appeal but was only given lowest rate care and no help with motability, that amounted to a massive £19.50 a week.

As I'm ex forces I was put in touch with the disability section of the Royal British Legion. They have worked tirelessly on my behalf and they have re-applied for DLA on my behalf.

The RBL and Parkinsons UK have been godsends in this episode and I would have given up long ago if it wasn't for thier help. I am going in for DBS surgery in 3 weeks but that still cuts no ice with the authorities, and I have been told that if I loose this next claim for DLA I will lose the benefits that I already get. DEEP JOY. Best of luck.


I don't know where you live, but I live in PA and applied online. It was rather easy. I took 12 weeks of FMLA first. SS will send forms to your doctor(s). Use every doctor you have. I have a rheumatologist for fibromyalgia and arthritis; a movement disorder specialist neurologist; and my primary care doctor. All documentation helps. I was approved first try. I'm not sure about you working at home. I claimed total disability. Good luck!


Good advice from all---DOCUMENTATION is extremely important--go online to everything carefully, Fill out an application and w hen they receive all the required paperwork you'll be approved. Good luck


I am on SSD. I applied and SS wanted their DR to examine me. I was approved 10 weeks. Also I had records to support my disability. As for working at home. You can earn up to $1,000 per month. You may also go on test period and at the end of test period decide to earn more & drop SSD or quit working. SS is very helpful in this department. Go to SS web site for up to date info as to working. There is a 2 year wait to receive medicare. GOD bless you & be happy. No stress allowed. Exercise a lot. YOU have the power to endure. Some of us have the power to heal ourselves.


That's encouraging, what state are you in though?


Las Vegas, Nevada


So Right...and purelabor also is correct. Hire an attorney to carry the burden with you the stress is deadly. Their fee is fixed and they are used to the denials and delays. I'm in Florida. I assume you're in AZ?


I applied 2 1/2 years ago and am still waiting to go to court. PD is on the list of automatic, however, it depends on your state. Here in Oklahoma they drag everything out. I had all my Dr. reports and should have gone right . Not here.

I was told by a SS employee that Christoper Reeves wrote a book as a Quad, so, I could do that. She was typical here in Oklahoma.

Make sure you have a good local Atty.


That is terrible! Why would I need an attorney?


Apply yourself. Then If you get denied get a lawyer to do the appeal. When you get approved they pay from the date you file for benefits.


Thank you everyone! It is so unfair that it actually depends on where you live. By the sounds of it, the stress of the financial issues is likely to be an equal exchange for the sttress at work. Someone mentioned an attorney, why do I need an attorney if I have the physicians records & my own account of my struggles & challenges? An attorney knows nothing about me or my condition.


By the way, I am located in NY State.


Hi Sedona,

Have you checked with the Human Resources Office at your job to see if you have Disability Insurance. It is sometimes a little known fact that most employees carry disability insurance for their employees. When my doctor insisted that I quit my job I did not know what I was going to live on while waiting to see if I qualified for SSDI. When I notified Human Resources that I was leaving, retiring under Doctors orders, I was given a bunch of paperwork to fill out and a # to call. I soon found out that I could apply for disability with my employer. I was paid 65% of my salary for 9 month while I waited for an answer from SSDI. It saved my life! I did have to payback a portion of the income I received for those 9 month but it was well worth it for the peace of mind it gave me. I still receive a check each month from my Disability Insurance, The insurance makes up the difference from what the government pays me and what 65% of my salary would have been. If I make it to my retirement, of course, things will change again, but that won't be for a while.

Everyone else is right though, documentation is key. I have every Specialist visit, all tests ever done, Save it all! I was denied the first time and then employed a company called Allsup who took over all the details of filing again. All I had to do was call and keep them informed of my doctors visits ad tests. Within 9 month my application was accepted and I was official disabled!

Good luck, and as my Mom would say, "just keep pluggin' away"!



I applied for SSD 4 years ago and it took about 3 months to get the decision. I had to wait a total of 5 months to get paid but I had Short Term disability from work. My doctor said that I couldn't work so I got and sent in all my records myself(keep a copy). Social security sent me to a doctor that they chose. I did it completely on line. The process was a lot of work but ok in the end. Medicare does take 2 years from the date of acceptance so I had to purchase COBRA. I still can't work but I do know people that went to work part time and still have their benefits. They can only earn so much before losing benefits. I do know some folks who had an attorney, I didn't need one. I'm sure you can find the laws of NY on line but a consultation with one, just to know the laws, would have been helpful and eased my stress.


Good documentation is key. It's us very common to be turned down the first time. I applied in May 2009 at age 56. I was rejected in Dec. 2009. I hired Shook and Stone attorneys. They did all the legwork getting APS from docs and completing the over complicated SS forms. I finally was approved un Jan 2011. Thank God I had group disability that helped us get by. I was an insurance agent un Las Vegas during this period. I have since moved to Southern New Mexico with family. Good luck!


i can't answer too many of your questions bad news i'm told is that they don't always approve your application. i'm re-applying right now. First time i was told i made too much money and didn't meet thier qualifications for disability. The only money i have coming in is money from my ex and that doesn't even cover the cost of my meds. I have been told to get a lawyer or and advocate. Good Luck let me know how it goes.


Documentation is critical, as well as the quality of the Doctors information on he form. If PD is the listed condition, then there is a chart which is referred to that has list of medications. If you are taking enough of those just to function, it is a slam dunk. Never were we asked about other income, as it can evaporate quickly. I had paid into the system for over 40 years and just could NOT do it any longer. Please, please do not let them talk you into any early benefit program. Harder to transition from those.



cumentation! AND find a doctor that is well versed in writing up your medical issues and needs. WE found a neurologist that the disability attorneys used in court to write up my application. Too bad so many dishonest people have made it difficult for us really ill folks to get this. All of the above advice is great. Good luck and don't give up....some get it the second time around.

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The Social Security Adminstation has a new updated web site . Anyone and everyone should register for their information about their Social Security benefits.

The site will also allow you to file SSD (social security disability) it has want is now called a fast track claim status. The Veterans Adminstation has been using the fast track system for Veterans to file claims for a couple of years now.

So it was good that our Social Security Adminstation now also uses the fast track claim process.

One of the reasons the SSA added the fast track was to help our veterans wreceivinging service connectcompensationion to also file for SSD and visa versa. My husband filed for SSD in 2002 when he was let go of his job , he was diagnosed in 1999 with PD. He had and still has a very good Doctor.

When he lost his job in Dec of 2002 he filed for unemployment, called his Doctor told him he was going to file for SSD so it would not be a surprise when the SSA contacted him.

My husbands claim was approved within a couple of weeks. but since he had to be unemployed for 4 months his payment started on the 6th month with two months of back pay.

Parkinson's is a horrible disease to have no one is going to get better there is no cure, this may sound harsh but that is what the Social Security person who reviews your records needs to read. And your Neurologist should address that when he writes his response to the Social Security department. The Social Security dept only care about how you are going to support yourself either now or in the future. Dont be afraid to file a claim.

Good luck,

Noreen Callahan Hamm


I was denied Disability because I was a "Mr Mom" and I didn't have enough Work Credits. . Too tired to fight.


I live in Virginia. I applied for SSD in September 2011. I was denied (no surprise there). I applied for a reconsideration. Again, denied. They had my medical records, but as I am only 52 and diagnosed in April 2010, I guess they felt I had not progressed far enough. I now have a lawyer who filed an appeal. I will go before an administrative board and someone will actually see me and talk to me. I am pregressing faster than i would like and not as responsive to meds as I would have hoped. My husband has a good job, but travels a lot. We are also raising a 14 year old son. Stress does not help, as you know, but I have no choice sometimes but to live with it. He is a good kid, but still going through puberty. And my husbands job pays the bills, but it would be nice to know I could pitch in with home repairs and such. I have hope this time. This guy is a specialist in the field and he would not take on a case if he didn't think there was a good chance of winning. Your doctor has already told you to cut back your hours and your staff covers for you, so truly, you are not able to work full time. As for your part-time home business, keep it if it is what gives you peace. Do you have to record an income? Good luck. I hope you find answers and success with your journey.


I was diagnosed at 32 after 2 years of the doctor merry go round before diagnosis in 2004. I continued to work until 2007 when I was laid of an Account executive job of an International hair care company at which time I began claiming CA state disability while I applied for federal disability. I was denied the 1 time as are 90% of applicants plus Parkinson's was not on the federal disability list although it ranks in the top 15 causes f death by the CDC (federally and in every state). With a lawyer, who are free of charge ( save for about $50 in paper work), a year and 4 months later I went in front of the judge who ruled in my favor in less than 10 minutes and was vehemently angry it took so long and wasted court time for this decision. The federal physician who deemed my able made so many mistakes plus the federal physician was a no show so there was a phone in neurologist who was reading the case as he was speaking to the judge because since he was still in school he did not have time to review the case due to his internship, classes and was actually calling from a library where he was studying for a test. The judge hung up on him in disgust. The only person to show as federal representation was the person who has a stack of books that has every legal code of what is required to complete the career one is professionally trained in suggested the judge give me the ruling as he could see by even the federal doctors whose very poor assessment still showed I qualified for SSDI. Glad to say I received my checks plus back pay from the very 1st day I applied. The judge actual requested the names of all federal employees who worked on my cases so he could reprimand them or bring them up on charges. In final I suggest applying for SSDI before you reach the age of receiving only SSI because you'll get a larger check based on what you've actually paid in rather than just the lower federal average. Both my parents are retired after working many more years than myself and receive about half of what I do. I say apply because there is no loss in applying as you can contest it at least 2 times. As I understand it 90% of 1 time applicants are denied yet 88% receive checks upon reapplication the 2nd time when you have a lawyer. Good luck and I hope my story as well as others help you out.


hi Sedona you must claim for PIP (personal indipendent payment) insist on a home visit from the person who asseses you and that they have knowledge of PD i retired two year ago due to Parkinsons and recieve PIP , esa , and my monthly pension from work esa=employment support allowance please let me know if you need advice regards Mick


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