[Stitcher]

When will PWPs be able to stop hiring expensive attorneys to obtain what is rightfully ours...Social Security Disability Income. How do we make change in the system. Shouldn't some diseases such as PD and MS...progressive degenerative disease...be "no quesitons asked"?

...and when will this phrase go AWAY for EVER:

"I've been told, 'You're too young to have Parkinson's,'" Ferraro adds.

"That belief could explain why some Parkinson's sufferers in the region[Pittsburg, PA], who, after being forced to surrender their livelihoods during the prime of their professional careers, must fight Social Security to collect disability.

"In fact, some are finding the government to be just as unforgiving as the disease.

"According to David VonHofen, director of programs and outreach for Parkinson Chapter of Greater Pittsburgh, young-onset sufferers like Ferraro are hit hardest when denied disability."

Excerpts from this article: http://www.pittsburghcitypaper.ws/gy...tent?oid=35845

[indigogo]

Carolyn - thanks for posting this - I sent the link to PAN; they are investigating issues regarding Social Security.

[Jomar]

Does PD show up on any tests, like a MRI or CT?
Or is it a differential diagnosis by cumulative symptoms?
I was working full time when my dad got dx'd so I don't know what the process involved.

I know a major problem for many that have RSD {reflex sympathetic dystrophy}, TOS {thoracic outlet syndrome} have a very difficult time "proving" it to work comp, SSDI etc, because there is no absolute "test" that will show it.

[Stitcher]

Thanks Carey. I also emailed Amy and Ronnie about this "pet peeve" I have had for a long time. I thought PAN with involved in some way, but didn't remember. Shame on me, I should have known this as fact.

This is the top of my "pet peeve" list!!

[indigogo]

Carolyn - no shame on you! it's something that Amy has very recently taken on.

[Jaye]

jo - the diagnosis is by neurological exam and, if necessary, patient history. I was diagnosed in the waiting room by the nurse as she escorted me to the examining room. I was 53. She hadn't seen me before but didn't know I was undiagnosed, probably because my PD was so obvious to anyone familiar with the disorder. The doctor concluded the same thing in about 20 minutes, told me he thought I had PD, and scheduled me for an MRI to rule out other things. The report from that, within a day or two, left me able to face what I had to face and do what I had to do. This was obviously not in the United States but in an older country where people aren't "protected" from the truth in order to make it "easier" on them.

Social Security: I got mine on the first try with no attorneys. I had excellent letters from a neurologist and a neuropsychiatrist, and I included copies of the clinical notes from my examinations. My boss filled out the form about my disability saying I was increasingly unreliable, and I wrote the same in my statement of disability. That was the hardest part, facing that I really was not dependable and not answering any questions with wishes but with the unvarnished truth. I found information on Parkinson's Disease, verifying all of the above as symptoms, from the National Parkinson Foundation and others. I made copies of the information and attached them as part and parcel of my application for SS benefits. I was unable to fill out the forms myself though--really--so my husband did it and stated such. I was somewhat late getting the form in, and when I went to the SS office to explain, couldn't keep track of my belongings or understand any instructions that involved time or sequential actions--really (my meds weren't very well balanced and oops I didn't take them that morning on time). My husband drove me over there. Then there was a mixup with my name (I have been married twice plus some other stuff). By the time that was straightened out my application (remember, it was 1/2 inch thick from all the documentation--with those parts that applied to me highlighted in yellow) was on the desk of someone in charge of a large building-full of staff. Once he finally got me squared away he sounded very relieved. My checks come on time, but otherewise I've never heard from them again.

[lou_lou]

went to court w/a lawyer -judge was out /replacement judge a navy judge -ruled I was faking my symptoms -reason because they turned off like a light bulb!!!!!!!!!!

so if you get it - thank God!
sincerely,
tena

Originally Posted by Carolyn

When will PWPs be able to stop hiring expensive attorneys to obtain what is rightfully ours...Social Security Disability Income. How do we make change in the system. Shouldn't some diseases such as PD and MS...progressive degenerative disease...be "no quesitons asked"?

...and when will this phrase go AWAY for EVER:


"That belief could explain why some Parkinson's sufferers in the region[Pittsburg, PA], who, after being forced to surrender their livelihoods during the prime of their professional careers, must fight Social Security to collect disability.

"In fact, some are finding the government to be just as unforgiving as the disease.

"According to David VonHofen, director of programs and outreach for Parkinson Chapter of Greater Pittsburgh, young-onset sufferers like Ferraro are hit hardest when denied disability."

Excerpts from this article: http://www.pittsburghcitypaper.ws/gy...tent?oid=35845

[chasmo]

The trick is to have a PERSON by name on all correspondence. That would be your caseworker. Get your self a 3 ring binder and keep a copy of ALL correspondence. IF you can, go down to your office and HAND them the correspondence, that is the best. Get a signed recipt for everthing you hand them, or send it certified U.S. mail.
SSA is notorius for losing your paperwork. IF you can say so&so recieved it on this date and time. The onus is on them then.
Allways let them see you at your worst also.

My disability quest was very straight forward. it is nothing to be scared of.

Charlie

[ol'cs]

I waited for 5 years after dx, after a SPECT scan, four neuros opinions, and an employer who was fed up to the point where THEY signed me off on permanent disability. Maybe that's the reasons, i don't know. But i also heard that it's the STATE that you are living in that has a great deal of influence over the descision. In other words, the individual case workers are called to a meeting and told by higher ups that "we now approve most parkinson cases if they have good documentation". That would be at least one good neuro's opinion, and a sympathetic case worker. If you don't have a sympathetic case worker (one who has experience with PWP, and understands how debilitating it can be, and understands "on/off) then you are at a disadvantage. Appeal for a different case worker, one who has experience with PWP, and ask them to define their policies on PD. There is a chance that all that stands between you and your SSDI is a few properly placed "darts".

[vlhperry]

Hi Caroline,

Perhaps because different personalities react to the news differently. My sister was diagnosed in her early twenties. She had always been determined to be a nurse, even as a child. When she was diagnosed she worked until recently, when her symptoms were so noticable that no one would hire her. She, like me, was approved the first time.

Some people are able to tolerate the symptoms if they are milder, as most young parkies have a slower progression. I thought it was the end of my life when I was diagnosed.

There is such a broad spectrem of symptoms for the disease that it may be understandable when young onset parkies are turned down. They will draw on the funds for a long time.

I think the workforce is generally demanding more of employees in terms of longer mandatory hours, weekends, etc. and causes parents of young children to encourage their children to participate in as many afterschool activities as possible as they have no way to get the children to daycare. This stresses out the next generation. Employers have no options because they can no longer afford healh care coverage for their employees. What to do, What to do?

Sorry for the stress,
Vicky