Disability Hearing

[Susie01]

My disability attorney have finally been able to set a date for my disability hearing in July. Does anyone have any pointers and what should be my expectations?

[larry33b]

Tell the truth but let them see you at your worst.

[Carrigan]

Yes as Larry says tell them how it is, maybe hold off with the pd drugs if you can and let them see how you are without them, Good luck

[Susie01 in reply to Carrigan]

Right now, the truth is pretty bad...my hands, feet and fingers are in so much pain I can hardly stand it. I take Azilect for the tremors but am scared to death not to take it. I was soooo bad before I started taking it, I could not stand without falling and shook so badly, the hallucinations, etc. It is not something I want to relive. I will have to think seriously about that one. I have had other people tell me the same, not to take my meds...

[Carrigan in reply to Susie01]

Sorry susie just thought it could be of some help if they saw you at your worst but no you should take them if you are in so much pain and unable to stand, is there any chance they could come to you. Its unbelievable what people have to go through just to prove how ill they are, it just isn't fair.

The very best of luck, cant you print off some of these bloggs and show them also and let them know how people feel the genuine ones xx

[Susie01 in reply to Carrigan]

I am going to talk with the attorney's office and see what sort of testimony can be allowed.

[WayneP]

Just don't get how people get denied even the first time, I am baffled. Got mine on first try, I am 47. Number 1 thing they have got to understand, you won't get better. I get why they are getting harder on giving disability because of the economy but that is not your fault nor will your condition improve with a higher stock market report. I have had three friends locally who have been denied, gotten their court date and then told within days of going to court that upon review not to come to court because they had ruled in their favor. Hope this happens to you.

[Joyable in reply to WayneP]

They need to know that you won't get better & that you will be getting worse. And isn't it shameful that those making these decisions crucial to our wellbeing wouldn't be qualified to already know this?

[Susie01]

Thank you, it would be great if it happened to me. Like it or not, I am discriminated against due to a high level of education and starting with a higher level of intelligence than average, they don't seem to understand the brain cell destruction thing.

Even since the PD, I have been able to be highed in my field, but cannot keep a job because I cannot organize my thoughts, cannot remember anything. They were informed I had PD but declared how "normal" and well spoken I was when hired. Then the stress starts and I cannot even remember what department I work for or what my name is when I answer the phone!

I am tired of being set up for failure, though I have tried to continue working until I was let go from my last job. I am still putting in applications through Voc Rehab, they have not been able to find anything with the retrictions I have and it will only be min. wage when they do and the most I could do would be part-time.

SS has all of the medical info and the work documentation but still denied me twice saying they did not see any evidence that I could not continue my job, please tell that to the employers who let me go!

I was diagnosed at stage II and am really more stage III now. I am in constant pain. Azilect helps the tremors but that is not the worst of it now.

[olpilot in reply to Susie01]

I had the same type of thing, I had to do 3 neurophyic test before they realized there could be a problem. First was way above normal for age and so on, was 50. By the time I was 56 I was in low normal for my age. So the phycologist said I was still ok,I had to mention if I went from way above normal to well below normal in 6 years if that didn' t maybe indicate a problem. HE HAD TO THINK ABOUT IT FOR A WHILE. PD is not the only reason for frustation. Finally it was the head of the university neurology dept that finally filled out my paperwork. I was awarded my disability 3 weeks later,with out a hearing. Best of luck to you.

[Susie01]

Thank you, it would be great if it happened to me. Like it or not, I am discriminated against due to a high level of education and starting with a higher level of intelligence than average, they don't seem to understand the brain cell destruction thing.

Even since the PD, I have been able to be highed in my field, but cannot keep a job because I cannot organize my thoughts, cannot remember anything. They were informed I had PD but declared how "normal" and well spoken I was when hired. Then the stress starts and I cannot even remember what department I work for or what my name is when I answer the phone!

I am tired of being set up for failure, though I have tried to continue working until I was let go from my last job. I am still putting in applications through Voc Rehab, they have not been able to find anything with the retrictions I have and it will only be min. wage when they do and the most I could do would be part-time.

SS has all of the medical info and the work documentation but still denied me twice saying they did not see any evidence that I could not continue my job, please tell that to the employers who let me go!

I was diagnosed at stage II and am really more stage III now. I am in constant pain. Azilect helps the tremors but that is not the worst of it now.

[drew410]

If you do not absolutely hear the "bleep" DO NOT press the response button. People have a habit of pressing the button if "they think" they heard the bleep.

[MichaelOM]

You live in a different state than me, but I was told, like it was a profisy or something, " You will be denied twice. The third time, with a lawyer by your side, you will be approved." and thars what happened. Good luck Sisie. Mike

[Joyable in reply to MichaelOM]

Me too.

[wifeofparky]

Hubby was lucky and got it the first time we applied and without a lawyer.. Documenetation from your doctors is the best evidence you cn have ad I'm sure your attoney has that. Good luck. Hopefully someone with any brain left will approve it and you can forget the hearing.

[jobby]

Filled in lots of forms and questionnaires . I told them im a knackered old Bricklayer with pd.both knees replaced,arthritis and a bad back. There reply is a face to face assessment, much rather talk than fill in forms bring it on.

[Susie01]

WULD LOVE TO HAVE THEM FOLLOW ME AROUND THE LAST 2 DAYS. MY BODY IS SO STIFF AND PAINFUL...

[Joyable in reply to Susie01]

When I was applying, I longed for a worker to spend some time with me. Think that's the way it should be. System is so very flawed. Time & funding is wasted on repetitive paperwork processes that normally produce highly inaccurate results. Decisions could be made on clear & real in your face evidence. Ineligible applicants could be quickly weeded out & applicants in need could be promptly determined eligible.

I think you'd do best at your hearing if you concentrate on the factors that interfere with your ability to keep a job. Give examples. I don't think skipping any meds would be worth it. No one can see the extent of your pain & how it affects your functioning. Visible symptoms such as shaking are only relevant in terms of how they affect functioning on the job. Unfortunately you won't be seen functioning for any significant length of time. My lawyer had a lot to say about what I should & shouldn't say. The judge asked me to describe my most debilitating symptom. Good luck!

[Susie01 in reply to Joyable]

Thank you for the insight. I would have to think about what is the most debilitating aspect. It seems to change constantly, over the last 4 days it has been almost unbearable pain in my extremities.

Though I think for me the worst aspect has been the congnitive losses and no longer being seen as competent in my field...

[Kadie57]

I live in Wisconsin, my disablity went thru 1st try but the medical part denied?? so I have to wait 2 yrs for med help, I had to keep ins to have co pays for meds. Yes it is scary to go with out meds have you ever been taped with and with out meds by your doctor?, if your doctor signed and filled out paper work in your behalf that worked for me. Best advice tell the truth, your nerves will still shou your PD even tho you might think it doesn't and take someone with you, Good LUCK !!

[Susie01]

Hi Kadie,

I wish mine had been passed the first time or even the second.... My Neuro did write a letter from day one but it did not seem to matter. I do think it works in my favor that I did continue in the pursuit of a job, found one, but could not continue due to the cognitive and physical issues. Of course, all of that documentation was sent to SS...

The insurance coverage with Medicare is 24 months after approval for everyone. I have not had insurance since 2009, I could no longer afford it. I live in TN, which has the great social experiment of TN Care. They are now only accept women with breast cancer and children.

I get my Azilect through the manufacturer at my Neurologist office, my Internist saves samples for my BP meds...I have been accepted at a "free" clinic ($20 copay) but they do general medicine only.

Thanks for the emotional support, Susie

[Hidden]

Hi Susie. I also understand how frustrating this process can be. I don't even like to say the wor " disability". I, instead prefer to call it "challenge". I was approved for short term disability with little to no problems. Getting approved for long term was a different story. I was diagnosed two years ago at the age of 46 and my symptoms have gradually increased. It began with tremors. Then came the fatigue caused by the meds. I worked in the hiring unit for a local police dept and did a lot of "running around". My job entailed both physical and mental abilities ( fingerprinting applicants, taking many phone. Alls to answer complex questions to filing which included using a ladder to reach files) this was only a small portion of my duties. My cognitive ability has decreased - word loss as well as memory loss. Deep depression as well. My main reaso. For denial was ( and I'm not joking) the timespan between my appointments with neurologist ( movement disorder specialist) was too much time! My dr had already completed their paperwork stating that I shouldn't be working and the reasons. The company actually told mr that my "timespan between appointments" was more of a factor then my dr's signed documentation!

They had absolutely no compassion and were very rude. I supplied written documentation of all the phone calls during the period where I did not have a office visit. At that point, they sent me to a local neurologist. This dr agreed with my. Dr and sent the company a report. This resulted in their approval of $50 per month! Seriously?!! I've hired an attorney & they finally approve me for the entire amount. This process alone exacerbated my depression. The stress is unbearable as I have developed a huge lack of coping skills. This company has put me through unnecessary stress and we all know that stress makes the symptoms worse! I'm still consulting with my attorney, but feel so exhausted and taken advantage of. They just don't understand the disease and that you can't oredict if you will have an on day or off day. I'd suggest that you supply the company with all of they our do for documentation.

Good luck to you.

[Hidden]

Sorry for all of the typos!!

[Susie01]

I was compulsive about my typos for a while...I am a little more forgiving of myself now. I completely understand the cognitive issues.

How long did they think you should have between visits to the Neuro? Mine only has me come evedy six months. When I do go, I don't feel like my questions or concerns are addressed with anything other than, "you have PD, that is just part of it". He has given me additional meds for break through tremors, which is one of my lesser symptoms at this point...

[Hidden in reply to Susie01]

Susie, it's funny you should ask what the appropriate time between visits is. When I questioned LTD rep, they did not have an answer for me! I feel they were just using that as an excuse not to approve me. I asked if it was the same for all conditions & how do they determine appropriate times between visits. Still no clear answer only. " the Board decides"

[Susie01 in reply to Hidden]

Because I do not have insurance, I go the minimum. Once every six months to the Neuro, every six months to the Internest and every six months to my Psychiatrist. All of those are $100/visit.

My washer went out in December, I cannot afford to have it fixed or buy another one. We have been doing laundry by hand in the large laundry sink and hanging it out in the heat to dry.

Some of what goes to doctors could have fixed the machine, but I have to make choices...

[Hidden in reply to Susie01]

Sorry to hear that. Dr visits are definitely expensive.

Have you looked into any type of program ( grant funded, etc.) that could help you out? It's hard enough to have this condition, but the extra worry of $ doesn't help.

[Hidden in reply to Susie01]

Susie, is your neurologist a movement disorder specialist? It sounds like your dr isn't thorough. I see a movement disorder specialist in Phoenix, AZ and he's very thorough. Sorry for all you have to go through. It's upsetting when a "professional" just dismisses you that way. Best wishes & hang in there

[Susie01 in reply to Hidden]

He is just a Neurologist, I would love to have a movement specialist. Without insurance, it is difficult to get any medical care. I have to do without a lot in order to pay dr bills and do not get other tests, etc. which could help me because I just do not have the money for it...

Even though I am a nurse myself, the nurses and employees at the clinic treat me like a street person because I do not have insurance. I am so tired of it all.

Perhaps when I do get my disability and eventually Medicare, I can get some of the help I need.

[Koko]

Like so many doctors and medical offices no one know anything about PD> I dot my disability and I took every moment I could teaching the interviewer about the disease.I think it helped.Gently inform them about a typical day. I had to fill out t questionare before I saw anyone. THe first question was, "What grade did you drop out of school?" Here are a few more: "What is your interpreter's name?" "What is your drug of choice?" "DId you ride the bus or walk here?" I thought it was so absurd it was funny. I drove myself there in my own car, I have a master's degree and no interpreter. I do not have a drug of choice. Good Luck.

[Susie01]

Wow, as if we got this disease because we were subnormal intelligence and did drugs...amazing!

From my observations, most people with PD are smarter than average, achievers and not druggies...

[Matilde]

Hi Susie,

I was diagnosed with Parkinson's at 42, I am 49 now. I managed to continue working as a Teacher until last year. I felt under a big depression due to many adverse factors in my life. My neurologist put me on temporary disability for 6 months. Depression got worse due to my compulsive gambling, I was approved for permanent disability by the State of Illinois. I am even allowed to work now on a part time basis, as long as I don't earn over a certain amount of money. I guess disability for Teachers works different than SS. I wish you the best on your hearing. Life for us don't get easier, that's for sure.

Kind regards,

Matilde

[Hidden in reply to Matilde]

I am on disability (former teacher) in the state of Florida. I am not allowed to make ANY money.

Wish I could make some....though I'm not sure how I'd be able to do that.

[Susie01]

I think what you have said is very true. It does not get better and that is hard to swallow. I will have good days when I try to deny to myself that I have an illness, I overdo things and end up sick for days, that is what I am dealing with right now.

I have a neighbor who's Dad had PD and she reminded me of that fact when I was overdoing things, she was right, that was almost two weeks ago and I still do not have my strength back...

Hard to accept.

[Writer]

It's very important to let the judge see you at it's worst. So, don't try to overmedicate, overcompensate etc. Let the tremors fly, the bradykinesia roll, speech or swallowing problems ensue. Now is not the time for humility, unfortunately....explain every compensation you have to have (special glasses or untensils for eating/drinking, handicapped issues etc). Be truthful and don't be afraid to tell them how bad it is. Good luck, I was approved fully favorable.

[Susie01]

You are right. I hated to send the employee evaluations that I had, I sounded like a total incompetent. That was hard because as an employee, I had always been given raving reviews. But I know they need to see how both the physical and congnitive skills have been affected.

[reverett123]

Susie01-

This may be of limited value being at the last minute, but it may help at some point. Also, I think that we share a Congressman (Duncan) which may make a difference. I applied for SSDI two years ago. After four month's waiting I contacted Duncan's local (not DC - too busy) office and explained the situation and asked for help in cutting through the delay. I was careful to make it clear that I was not asking for him to influence the medical evaluation but just to break up the log jams and minimize the hardship. Four days later I got a phone call from the person responsible for the decision making apologizing for the delay and just over a month later received my first check! I was impressed!

Finally, NeuroTalk has an extensive forum about SSDI for PD and a host of other conditions at

neurotalk.psychcentral.com/...

Good luck - Rick