[MikeTTF]

Most of you are familiar with the NPF's Ask the Doctor/Surgeon/Dietician?

Elliott's story this morning is very scary.

(I'm trying to get more details from him ... e.g. what was the "medical improvements" that prompted this SSD action?)

RE: My concern

Comments?

===============================================

Subject: Stress and the Social Secaurity Admin.
From: "Anonymous" <dietitian@forum.parkinson.org>
Date: Thu, 07 Dec 2006 15:41:30 -0500
X-Message-Number: 6


I realize this is sort of off the subject of this forum. But I believe
this may be of interest to your readers seeing most likely a good deal of
them are on Social Security Benefits.

I have had Parkinson's for 6 years now and have been diagnosed for 5. I
take 7- 25/250 Carb/Levo at 8am-10:30am-1pm. From 4pm to 9 or 10pm I need to be supervised. Because I choose to have most of my proteins at my large meal so my medication fails to work until 9 or 10pm. When my meds. are off I can rarely hold a cup of water or even change the channel on the TVremote. My night meds.I take at 7pm-10:30pm and 12am. I have a 7thpill I take if I can't go to sleep by 2pm.

On Nov.4th I recieved a termination of benefits notice from the Social
Security Admin. The termintion notice states my benefits were being
terminated because I am able to work because of MEDICAL IMPROVEMENTS.

The date on the notice was Oct.27. It stated my Medicare benefits were
canceled as of Nov 1st. I recieved this notice 3 days after my medicare
was aready terminatated. The notice states that if I fill out the 10 day
appeal form I will be able to keep my medicare and benefits until the
hearing. So I pulled the form from SSA website. Filled it out and my wife
was there Nov 6 Monday morning to drop it off. Afew days later I recieve 8
medical information request forms. I filled them out and my wife mailed
them out the next day.

Weds Nov.22 A Mr. Clark calls me up and tells me he hasn't recieved
the forms he asked for. I told him I mailed them the next day. Mr.Clark
says if you maied them they would be on my desk. I said I scan and copy
everything I get from you people and I'll print out the forms and have
them brought to you Monday. He said We are open Friday...I want them
brought here Friday morning and if there not here by noon time I will
terminate your benefits. So my wife and daughter were there a 1/2 an hour
before they opened and waited an hour that Friday morning. When they seen
Mr.Clark he said to my wife I am sorry I had them under a pile on my desk
i don't need the forms you brought. My daughter asked if I have my
benefits back now because the 10 appeal. He said NO. We misplaced your
appeal so it wasn't sent in on time. So my wife and daugther came home and
gave me the news. Dec.2 I checked the SSA website to see if I still had my
benefits...NO they were terminated.

Now here I am with Parkinson's...NO benefits...Mr. Clark will not
return my calls as a matter of fact I called him Dec.4 in the morning and
told his answering machine that I would be calling back in a half an hour.
I did. The message on his machine now said I am going on vacation Dec.5 to
Dec.12 so you won't hear from me until Dec.13 if you leave a question. Now
I am ticked off!

The Sat Dec.4 I didn't have anyone to to turn to for help so I
emailed the Govenor of my state and a Congressman. Tues morning I recieved
a call from the Congressman's staff. Nancy said The congressman would like
us to look into this for you. I was more than happy to have them help me.
The govenor even emailed me and said A State Sentor was interested in my
case and would be willing to help. I informed them there was someone
already looking into it for me but Thank you for the offer.

Monday morning I contacted a Legal center for low income and free
service for the poor. I recieved a call from this wonderful women. She
seemed upset when I explained my case. And she stated she would be happy
to handle my case.

Dec.6 I called the main number to the SSA and asked them if they
could check to see if my benefits are restored. By GOD they have been
restored until Jan.1. From what I understand the SSA gives you 1 month
benefits after the termination of benefits. No one at the local SSA office
told me that!

So here I am today Dec.7 waiting to find out if my wife and I will
end up homeless and me with no medication if my appeal hearing goes bad.
My problem is not that I am not able to work. When my medication does work
for an 1 or 2 at times. It is never reliable as we all know it works when
it wants to. I don't know who would employee a 51 year old man who may be
able to work 1 or 2 hrs at a time with hours he is not sure of. This
decision the SSA made is a DEATH sentence for my wife and me. My wife was
diagnosed with Schizphrenia 24 years ago 16 months after my twins were
born. I have been taking care of her and her dealings with the infamous
SSA for a long time. But as my disease progresses I find less time that I
am able to do things I need with my hands. I am down to about 4 to 5 hrs
in the day were I am some what functionable. And I have about 3 to 4 hrs
during the night.

This is the part that has something to do with this forum. With the
amount of stress that I have now I find my meds.are not lasting as long. I
am haveing severe bouts of anxiety and some depression. I am very
anti-med. I don't believe in popping a pill for every little pain. Mainly
because once you are taking a med. the goverment comes a long and does
something like this and then you are left with dangeropus withdrawl
symptoms...no money and no medical and no help.

So the moral of my story is...if your ill you better be healthy
enough to defend yourself. You better not have a diminished mental
abiltiy. You better know how to reach out to the right people. And if you
have Parkinson's you better have enough control to type!

Here are the mistakes that the SSA made in my case...
I didn't not recieve the 3 month notice of review. The date on the
termination notine was changed. Under the white out under the Oct.27th
date was Sept.12. Which left me 1 month to handle this problem. They lost
my 10 day appeal. Mr.Clark misplaced my Medical information forms but
found them 2 weeks later. Mr.Clark would not return any of my calls then
went on vaction leaving me with out a recoarse. And they terminated my
benefits with out having me see a second doctor for there decision.

Now that is where I am today....Dec.7 2006 Elliott

*********************************************

Dear Elliott,
This is unconscionable on the part of Mr. Clark and the SSA. Please - PLEASE - summon up all your strength and again contact your governor and Congressman, and if possible your local newspaper. State your concerns once more and ask for their help. If your neurologist is willing, s/he should be able to corroborate the erratic nature of PD and its medications and the effect this has upon your ability to perform your work.

I will keep you in my thoughts and prayers, and hope that justice will be served in your case.

I have little information on Social Security issues, but I will separately post what I do have. Write back and let us know how you fare.

Best regards,
Kathrynne Holden, MS, RD
--
For a Parkinson Tip of the Day visit:
http://www.nutritionucanlivewith.com/

[chasmo]

PAarkinsons is a PROGRESSIVE disease. Make sure you NEVER say "I am a bit better"', because you have changed your meds or whatever.

Miss a dose or two and THEN fill out your form.

I have to have my wife or one of my daughters drive me and fill out the forms when I go to the SSA. My balance is off and my right hand doesn't work.


take all the help you can get!!

Where did they get the idea that you had improved???

You need to correct that misconception ASAP!!

CHarlie

[paula_w]

I hate when I do that and in the meantime Charlie breezed in and out..geez lol.

What are we missing? Does Elliott have no idea why they are doing this?

It's pathetically callous...
...and the guy who works for social security is an ...h.... [sorry I don't swear much anymore, but it covers so much area....lol]

Please let us know what the mystery improvement was defined as. That is not off topic here. We retired all have an SSDI story.

thanks,

[Stitcher]

Mike, I have a couple of questions for Elliot.

When was the last time that SS solicited his neurologist for information?

If it has been "recent" then there could have been something written in his neurologist's file that lead SS to interpret his "improvement", e.g. with medication, Elliot has improved 'whatever'. Hence, they received their misguided impression from something like that.

What is truly infuriating is that there was not, nor never will be from SS, since they only push papers without caring about the people they push papers for, an inquiry about whatever they read that caused them to interpret "improvement"

His situation is one of my greatest fears. I deal with both SS and Hartford Insurance for long term disability benefits. It has never occurred to me that SS would be the evil villain. My greatest fear has always been Hartford's interpretation of my physician statements which they ask for annually, which I don't usually get to read. Gratefully, my current MD neurologist at Univ of Maryland sends me a copy and is wonderful about the words she uses, which is the critical part...The Words Used to define my PD.

I have always felt that legislation needs to be in place to protect anyone with a progressive illness, one from which there is no recovery. Those patients should have an initial review, including whatever testing/proof is needed to insure there is not a false diagnosis. From that the SS benefits should be approved and become permanent!!

I also don't agree that one needs to be disabled for two years after SSDI is approved before Medicare kicks in. I realize that this rule is in place in the event the patient does improve, but these permanently progressively ill patients will NEVER get well, so the proofing period of two years needs to go away. It is a serious hardship on those who need meds and medical treatment over that period...like me who lives alone and lives on my own income.

[Stitcher]

and I would be happy to join anyone who wants to fight the battle for permanent disability award

[Elliott]

I was preparing my info. for my case which comes up this June 20th at the DDS (Disability Determination Service). SSA gets there head chopping done by this private business the goverment has a contract with. They are local in your own state.

I have not gone down yet to see my file...I received the notice June 2nd. Still waiting for my lawyer to get in touch.

Sometimes you wonder if God has his hands in things because I got up today thinking...I need to find more info on "the erratic nature of PD and it's medications". This is one of the last things Kathrynne the Dietitian at PDF told me! And so I figure Google those words and see what pops up! This forum is at the head of the list.

And yes I was feeling better...yes I did tell my Doctor that...and yes I was an idot for being honest! I thought seeing there is no cure for Parkinson's and it's so progressive that there would be no possibilty that anyone could think I could hold a job.

I noticed my right thumb was beating to the music I was listening to when the music was done...my thumb wasn't. I didn't pay much attention to this seein I was doing a lot of landscaping and the hedge trimmer made my hands and forearms numb after 4 or 5 hours. A few months later the Thumb started to turn into a pill rolling. Now I am an internet junky so I start to look into things...yep I have Parkinson's. I didn't have insurance but my employer was trying to get it. This was July 1999. In Jan 2001 I was diagnosed with Parkinson's. In March 2002 I lost my job...April my employers insurance ended. Here in Rhode Island we have TDI (Temporary Disability Insurance) this is done by the state and they take a small amount out of paychecks to fund this. It gives you 80% of your salary and pays for your medical bills for 6 months. In Sept 02 I was on SSD but medicare will not insure for 2 years. (I believe this is how the goverment weeds out the smart from the slow. Your smart you find ways to contact people and stay healthy and alive. If you are mentally ill...old...or may be just a little lacking you will get lost end up on that states welfare system.) Goverment wins...citizen dies!

See I fell into this trap. NO ONE offered any help and for two years my handicapped wife (Schizophrenia-She was diagnosed 1 1/2 years after my twins were born. 25 years ago) my three daughters survived. At the beginning of that two year period I had tremor in my right hand and arm..Severe. One year into no medication no doctor visits I was drinking heavy and eating alot. I balloned up to 410lbs. Couldn't get out of bed most times...wife had to help. Couldn't hold a drink or even eat with out help. I was ready to die...I seen no future!

Well in that next year I got upset with myself...stopped drinking...lost 210lbs and at stage 3 Parkinson's. Severe tremor in both arms and hands..right leg tremor...gait...retropulsion...you name it. Sept 04 medicare covered. Seen my first nero in 3 years March 05. He starts me on Sinemet 25/100 4x. Good improvement and I continued with some level of improvement throughout until Aug.06. Now was up to 25/250 5x per day. I was having some off times and the Sinemet went from working 3-4 hours to 2 1/2-3hrs. AS of today I have some intense Dyskinisia, Dystonia, Anxiety and some Depression.

Now that should bring you up to the point of my intro to this forum and today. My question is what does the SSA and the DDS expect of me. Do they expect someone who is 52 years old with Parkinson's for 8 years at the max dosage of Sinemet 25/250 8x per day with part never full relief about 3-4 hours in the morningand 2-3 hrs at night to go out and earn a living with no medical?

I have a lawyer and my doctor said he would write a letter supporting my position and my mother in law is a retired RN with 40 years. She is going as one of my witness.

Well I will keep you all informed and Thank you for all your concern...Elliott

[Stitcher]

I have always felt that legislation needs to be in place to protect anyone with a progressive illness, one from which there is no recovery. Those patients should have an initial review, including whatever testing/proof is needed to insure there is not a false diagnosis. From that the SS benefits should be approved and become permanent!!

I also don't agree that one needs to be disabled for two years after SSDI is approved before Medicare kicks in. I realize that this rule is in place in the event the patient does improve, but these permanently progressively ill patients will NEVER get well, so the proofing period of two years needs to go away. It is a serious hardship on those who need meds and medical treatment over that period...like me who lives alone and lives on my own income...

and I would be happy to join anyone who wants to fight the battle for permanent disability award

It is shameful what people with progressive illness, one that there is no cure for and that leads to total disability, and death, have to go through.

It is shameful that a single word, taken at its literal definition, can end someones benefits without without question.

It is shameful that people with progressive illness, one that they is no cure for and that leads to total disability, and death, have to hire attorneys and go before judges to obtain what is rightfully theirs.

It is shameful that anyone might have to struggle for two years without medical care insurance before Medicare kicks in, especially those with progressive illness requiring multiple medications and treatments to sustain some semblance of a normal life.

It is very sad that we have to go among these "people" who make these judgements in an "off" position just to maybe receive a fair shake. If we go among them "on" they don't believe that we are sick and deserving of what we ask for.

It is shameful that an insurance company (LTD) can follow someone around with a video camera in an attempt to prove to themselves that the patient and the patient's doctors words about ongoing disability are WRONG!! (This happened to me six years ago...I will never forget the day.)

I know life isn't fair, but the SS process is beyond fair.

Maybe I my thinking is simplistic.



p.s. I can understand the need for the camera surveillance, but not for progressive degenerative illness like PD, MS, etc. I was on that side of the fence for years and managed employer LTD plans. Fraudulent claims happen all the time...I have watched the videos where people were caught...it was part of my job. But degenerative illness...why would someone WANT to use such an illness in a fraudulent way.