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General Questions About Parkinson's Here is the place if you have any questions or situations you would like help with, and to share any tips and ideas that make living with Parkinson's easier.

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  #1  
Old January 19th, 2015, 11:12 AM
Tohara Tohara is offline
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Default How easy/difficult to get SSDI for Atypical PD

I'm in my late 50's, I've had atypical PD for several years, and I'm unable to control it some of the time. So, from being a college-educated professional, I'm reduced to cleaning businesses 6 days a week on 2nd and 3rd shift, which is not a living wage.

I work more hours than I should, which my very nice boss seems to allow as "reasonable accommodation", but I work and sleep most of the week, with very little time for anything else. My boss is decent and caring, but this work is slowly killing me. My landlord is also kind, and he gives me a much-reduced rate, but he'll be retiring and moving in a few years. The end of me relying on the kindness of others is coming to an end with no prospects in sight.

Plus, I have other neurological problems Post-Traumatic Stress Disorder, Restless Leg Syndrome, tinnitus, and anosmia (lack of smell).

The PTSD is more than 25 years old and went untreated for the first 10 years, and so, it's pretty much permanent. The worst symptom is learned helplessness, but it also affects my sleep.

My tinnitus involves more than 10 tones and other noises in both ears constantly 24/7. It's as annoying as it is debilitating, and sometimes/oftentimes I must ask people to repeat themselves, or instead, I read their mood and go along with whatever their feeling.

My PD is very hydration-sensitive, and I'm often in the bathroom when I should be sleeping (about 3 AM till 12 PM) ... sometimes only minutes between visits. My PD also gives me lack of coordination, hot flashes, neck pain, etc. PD is a truly miserable disease.

The RLS-PD combo really complicates my life, especially my eating and sleeping schedules, and I almost never have anything near a restful night's sleep. I come home hungry from work, but cannot eat or my RLS will bother me, so I often go to bed hungry.

To me, SSDI is like committing suicide, causing me to admit that I'm useless/can't help myself. Others have consistently told me that I should apply for and accept the SSDI.

My big concern is that none of my disabilities can be confirmed with a real "physical" test. There's no blood test, biopsy, CAT scan, etc that confirms that I have PD, PTSD, RLS, Tinnitus, etc. Anyone can sit in a doctor's office and shake and walk funny and complain about hot flashes, neck pain, etc.

Also, someone in the know has told me that I must be unable to work before applying for SSDI. Quitting is beginning to sound nice as I could sleep a month away to catch up on my rest. But I can't afford to quit.

So ...
* How difficult is it to get SSDI for PD?
* What should I specifically include or exclude from the application?
* How long does it usually take?
* Do I really need to stop working to obtain SSDI?
* Do I really need to hire a lawyer (that I can't afford) in order to get SSDI?

Thanks
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Old January 19th, 2015, 03:40 PM
ludiemae ludiemae is offline
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Default Re: How easy/difficult to get SSDI for Atypical PD

Hi Tohara and welcome to the forum!

In the last year or so they made some changes making it much easier to receive SS for Neurological disorders.
In applying for my husband Bobby who also has PD, RLS and other health issues as you do we found it most important to have Drs that will back you up. I am sure this will not be a problem in your case. We had our Drs write letters that we took with us to our appointment. We did not use a lawyer and it took about six months in our case.
I was sure to list every symptom that makes it difficult or impossible to work in a normal situation, like having to run to the bathroom so often.
One thing you will need is patience. I did feel like I was answering the same questions over and over. I made copies so that I could refer back to them and in some cases just rewrite what I had already written. I won't lie and say that it did not get frustrating at some point. but, like you we were left with no choice. And Bobby was already unable to work at the point we applied.
Can you apply for disability while you are still working full-time? Yes and no. You can contact SSA and initiate a claim if you are working full-time; however, no medical processing will occur on your case. Instead, you will be issued an informal or "technical" denial that will be based on the fact that you are currently employed. Found this on a SS website and thought to include it for you.
Also, if you do decide to use a lawyer they usually are paid after you win your claim. I felt like if they are paid based on the settlement amount and the amount is based from the time you apply, it is in their interest to "not hurry" so that their payment will be based on a larger amount. This is a personal opinion and based on nothing but common sense.

Maybe the first thing you should do is give SS a call. They were most helpful to me and willing to answer all my questions before we started. I applied for Bobby on line at home after calling them.
I hope I have not confused you more with my random recollections.
I wish you luck and encourage you to take the step needed. The stress it relieves for you will be well worth it in the end.
Take care, Ludie
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Old January 20th, 2015, 06:22 AM
J of Grey Cottage J of Grey Cottage is offline
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Default Re: How easy/difficult to get SSDI for Atypical PD

Hello, Tohara --

Ludiemae has given a pretty thorough answer, but I thought I'd just add a few more encouraging words. My late husband had a very serious case of vestibular neuritis. It involved the tiring, annoying, unending tinnitus that you describe. He suffered squeaks, bells, whistles, and other sounds all the time and had to take sleeping pills to get any rest. At first he also had to relearn walking, turning, etc., because of the damage to his vestibular nerve. I won't go on with all his symptoms, but as in your case, they could have been faked by a good actor.

At first he was reluctant to declare himself "disabled," imagined losing his driving license, for example, though vestibular neuritis has no effect on driving. But when he finally decided to apply for SSDI, it was an unexpectedly easy process. The SS employees were knowledgeable; two doctors were taken at their written word; his paperwork wasn't too difficult; and he only had to state that he was unable to perform his USUAL work (not any work at all). Although his case was years ago, I believe the basic process has remained the same.

The hardships in your life certainly merit assistance! I wish you well in your efforts.

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Old October 3rd, 2016, 07:36 AM
Myquest55 Myquest55 is offline
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Default Re: How easy/difficult to get SSDI for Atypical PD

How about just typical PD? Did a search to come up with the most relevant thread. Husband just turned 60 and was diagnosed with Parkinsons a little over 2 years ago. He didn't intend to "retire" until full retirement age - 66-1/3 and is still working. He is also reluctant to apply for SSI but it would help out considerably before Soc. Sec. kicks in.

He has been doing alright at work but there are duties he can no longer perform. HR and the site Dr. met with him recently and he was able to obtain a list of duties for that particular job title. Husband feels he should work as long as he can and when he can no longer perform over half the duties on the list, he will probably have to call it quits.

We have heard so many varied stories about the SSI experience but I can see, if we are prepared, it should go more smoothly. Would appreciate hearing from anyone else about their experience, if you have applied for this.
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Old October 3rd, 2016, 07:50 PM
ludiemae ludiemae is offline
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Default Re: How easy/difficult to get SSDI for Atypical PD

When Bobby was forced to apply he only had a diagnosis of parkinsonism and I feel due to the letters from the docs was granted it without having to appeal even once. But he was not able to work a job at that time. Have you asked your neuro what he thinks. Ours was the first to suggest he apply.
Good to hear from you again, Ludie
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Old February 9th, 2017, 08:16 AM
Myquest55 Myquest55 is offline
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Default Re: How easy/difficult to get SSDI for Atypical PD

Hi Ludiemae - yes, we're still out here, moving forward with good days and not so good days but DH is still working with hopes of getting through another year.

I wanted to add to this topic, that at our Tues. appointment with the Parkinsons Specialist, we asked about her experience with patients applying for Fed. Disability. She said that her patients who have applied have never been challenged and the process has gone forward easily.

You can go to the Social Security website and print out the list of information they require. That way you can check off the things you need as you collect them. They say, repeatedly, that IF you do not have everything when you are ready to apply that you should NOT delay the application process and that they will make the effort to obtain the documents as needed. However, the more prepared you are - the easier it will be - considering it is the federal government and all...
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Old February 15th, 2017, 04:50 PM
ludiemae ludiemae is offline
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Default Re: How easy/difficult to get SSDI for Atypical PD

So good to hear from you again and thanks for keeping us updated and informed on how things are going for y'all. I wish your honey luck with working and admire his perseverance and strength.
Take care, Ludie
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