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Work and Parkinson’s what the actual fuck am I supposed to do now?

For all the newbies to this wonderful dilemma and those that have had it for a while and still work it seems this discussion is lacking a ton of information to help guide through this upcoming shit show. Questions like do I tell them or not, if so, when and so many more seem to get softball answers without any details. As a community we continue to dodge this discussion as a priority. All our efforts, especially when we travel to DC, go towards research dollars and awareness. Nothing to impact the lives of those that have PD in the immediate future like drug costs, insurance costs and long term insurance and state disability programs is ever addressed and these are the most debilitating than the disease itself. I’ve lost friends to suicide because they couldn’t afford their meds. Loss of homes and so much more. I can’t take it anymore. I will start the ball rolling.

When I was diagnosed, I worked for a Fortune 500 company, I was only there a year or so prior to diagnosis with a budding career ahead of me. I took the honest approach and put the corporate spin on it. I created a power point presentation describing everything that is going on even on a cellular level with bullet points and other ridiculous bells and whistles of what to expect. That was my first of many mistakes. It didn’t take long for management to start treating me differently. When I was diagnosed my new Parky friends were telling me that I had about five years until I would get canned or forced to leave. I was in great physical shape when I was diagnosed. Total gym rat. I was confident that I had at least 7 to 8 years in the tank before issues would be too much. I was an idiot. My last day was in my fifth year. To answer the question of should I tell my employer, Fuck NO. You wait until the last possible moment. I don’t care how cool your company is or how nice your coworkers are hold this close to the vest. Sure, my coworkers were understanding, some fake, some true but management was having nothing of it. They were getting their ducks in row, and I wasn’t. Mistake number two of many.

The moment you get diagnosed save as much money as freakishly possible. If I must elaborate on this, you’re an idiot and I don’t want to waste of my time.

FMLA and all the Americans with Disabilities Acts don’t protect you the way you truly need it. Sure, they force HR to “work with you” while you are employed with them but that is about as far as it goes. After that you are on your own. On the beginning of my fourth year after diagnosis and telling them my manager pulled me in for my performance review. Let me quickly mention that I NEVER received a negative review in my professional career and the year prior (the one I was to be reviewed upon) I led the entire department in one extremely important goal/requirement for our department. In this review I was reprimanded for taking too many sick days and vacation days. It was February and the winters mess me up, my PD and arthritis go out of whack big time and it was his belief that I wasn’t taking my job seriously anymore and that I was setting myself up to fail in the summer. Mind you that this manager was new not the one that hired me (I was hired to be groomed for her replacement and you can see that didn’t happen thank you Mr. PowerPoint) and had NO managerial experience despite being fifteen years my senior. I tried to explain that if he just looked at my history as we had electronic time sheets to fill which was stupid as we were all salaried (yes, so that accounting could bill our time to various work projects, I’m not an idiot) that this all balances out. I never took more sick days than given nor burned all my vacation time irresponsibly and honestly it isn’t his or the company’s problem, you give us this time for us to use but then you punish me for using. Because of this he deducted 50 PERCENT of my performance bonus and told me that by May I better have turned this around or my job would be in jeopardy. Let’s recap, I just got penalized for my last year’s performance for a made up attendance issue on the new year. By the way, May came and this asshole pulled me aside to tell me that I had turned it around to which I said “do I get the rest of my bonus now?” the answer was no. But unbeknownst to me this was their step to get HR involved. See the future? I still didn’t.

The beginning of the fifth year HR is now involved in my performance review and it has been managements perception that my performance was steadily declining I was rapidly approaching the level of their acceptance. February, we had a meeting and my phase out decision was made for me. I would get FMLA time to draw out full salary until June. I would receive short term disability which is 60% of your income (no bonus or bonus calculated) and by mid-December I would get long term disability which is still 60% of salary. It was explained to me that the company had administrative control over the short term disability and that I would be approved for it. When asked about the long term they said that even though an insurance company administered the policy they had equal control for the approval process (spoiler alert – they don’t). Being a company man, I followed their lead like a good little boy.

Being divorced and child support for two children I notified my ex and my divorce lawyer about the upcoming salary reduction to start in June so that support can be recalculated and that both parties could prepare for the adjustment. Complete waste of time. In May, my ex and her lawyer filed for petition to have a court date to address the support. Then proceeded to file continuance after continuance through November. To recap, in June my salary dropped by half (60% but come on) and I was still paying the full amount based off my original salary. The wonderful courts of Indiana did jack shit to help me out.

As short term disability was coming to an end it was time to get the long term going so there would be a seamless transition and no loss of income. We started the application process around October. Now the real fun begins, and all hell breaks loose. When you go on short term disability your employer has to legally hold your job until the end of the coverage date, in this case December 14th. When you apply for long term I can’t stress this enough supply them with as much as humanly possible. Provide copies of all and I mean ALL of your medical files from your neurologist to general practitioner and anyone else you have seen. Give them everything, keep copies for yourself as you may have to resubmit if anything gets lost or mishandled. Apply for your state’s disability at the same time and providing the same information. I can not stress the importance of applying for both at the same time.

By the first week of December I had finally heard back from the long term insurance company. I was fucking denied! Yes, you read that correctly, denied. In reading their response and I quote “it appears that Mr. Brandt obtained a dog over the summer (not sure how they knew that but…) and if he can walk a dog he can work” I shit you not that is a direct quote! Several attempts to get ahold of HR surprise there. They finally get back to me on the 13th as we argue as to why their help didn’t exist they were unwilling to provide anymore assistance with the matter. Stunned, I said “fine, I’ll be at my desk the morning of the 14th tomorrow” to which the HR rep nervously said let me get back to you. I said that was not necessary and anything they wish to discuss can be at my desk. The head of HR called me within an hour of this conversation telling me I would not be allowed on the premises unless I had a doctor’s note clearing me to return. The catch 22 card has been played and I am fucked. With long term disability once you apply you can appeal two times each takes about a month or two keep that in mind. I appeal, provide up to date information from my doctors only to get denied again. Typically, insurance companies deny the first application on purpose. It’s a numbers thing, weed out the applicants, make sure the ones that really need it put in the effort. If any asshole says this isn’t true I will give you my address and you can tell it to me to my face because you are a lying sack of shit. This happens, it’s real and documented. Now we are towards the end of January and I stopped receiving any income since December 14 what a merry Christmas that year was. When you apply for long term your file gets reviewed by one of the insurance companies doctors. You have no say in who this is. This is by design. Guess what happens next, yup, denied yet again but this time with a bit of irony splashed in as I got approved by my state’s disability program on my first attempt. This pays out differently than long term insurance but they do back pay to the date you are first eligible so please keep that in mind. When arguing with the insurance company and explaining I was approved by the state which has a history of being more difficult to obtain approval they didn’t care. In their report they had an investigator follow me for a weekend (without my knowledge, didn’t care as I have nothing to hide) and this is what he observed:

Friday: morning, subject doing yard work with unidentified young male, used a rake worked for an hour, didn’t see subject for the rest of the day (no shit, I was wiped the fuck out and slept)

Saturday: didn’t see subject all day (no shit, experiencing off periods), evening subject carried 3 large flat times (framed drawings) into truck and with two other adults drove to Chicago (art show) and drove home at Midnight.

Sunday: didn’t see subject all day (yup, beat from the night asshole)

It was this breakdown that I was denied a second time. My file review by their doctor was not included in their correspondence. Final appeal filed.

No surprise, two months later like Peter I was denied three and final times. Their doctor felt I was not properly diagnosed and could still perform my job. Mind you, this clown never met me, physically evaluated me or even physically discussed my diagnosis with my primary neurologist! Legally he didn’t have to. All he had to do was make an effort to contact my doctors and if they don’t respond in his unshared timeline too bad for me. So when I went through the report this dumbass put one date as an attempt to talk to my neurologist. One time! That was it. The great thing about HIPPA is that doctor’s offices have to time stamp everything and I mean everything. So I called my neuro’s office and spoke with the manager and funny thing is there is no record of this clown calling asking to review records or talk to doctor. Hmmm. My neuro had two offices so maybe he got it wrong and called the other by accident. Nope, same thing, no record of any request or call back this dick lied. I looked this clown up to find his practice is in Oregon. I live in Indiana. I call his office pretending to be a new patient as I just moved into town and asked how many patients he saw had Parkinson’s Disease only to learn that about 10 PERCENT of his patient base had PD. The insurance company was selling this assbag as a prominent doctor in this field. 10 fucking percent people! Prominent my ass. But it didn’t matter my time was up no more appeals my only option was to sue.

I am on a very restricted budget if you can call it at this time. I did not have the $2500 retainer to get the ball rolling not to mention it could take up to two years and several thousands of dollars in legal fees it seemed the corporate insurance steamroller won. Sometimes David gets the shit kicked out of him by Goliath, right?

I walk away defeated and pissed. Gnawing at me every day. Time goes by and things ease up. I got remarried and things were looking up. Then one day I read that another Parky was getting their ass handed to them. I snapped. With the support of my wife and family on the last day eligible I sued. Thinking I have a solid case with all kinds of damaging information and facts. Feeling comfortable, feeling the flow. What a dumbass.

I strike a deal with my attorney. I pay the retainer and nothing else until it’s resolved and when I win, not if, he would get 40% of the settlement unless the judge orders the insurance company to pay his fees. Seemed fair at the time. I sat back totally expecting a long drawn out fight only to find out 30 days after filing that the insurance company wants to know if we are interested in mediation. We say yes and the real hell begins.

Now it’s a numbers game. Let me explain. For example, (not my numbers but you’ll get the point) if you were making $40,000 a year with the company long term would pay out 60% making it $24,000 a year, $2,000 a month is what you are fighting. If you get your state’s disability that amount is deducted from the payout. This would happen if I was approved in the first place which is something I didn’t know until then. Deduct roughly $1,000 a month now you are fighting for $1,000 a month to be calculated from the time I was denied until you turn 65. I was 45 when this went down so let’s use that for reference. Without the state disability the amount owed to term would have been $480,000 if I was never denied or even approved after the second or third denial. Take into account the SSDI $240,00 deduction the insurance company’s out of pocket would have been $240,000. Apparently, no one wants you to have anywhere close to what you were making to live the rest of your life off from not even taking account of any bonuses lost, wage increases etc. But back to this game. $240,000 is on the table. I was asked what I was willing to settle for and I responded 240K plus legal expenses. The mediator tried to talk me out of this request saying it was unrealistic. I told him to shut his mouth and deliver the offer. The insurance company’s legal representative countered with, wait for it, wait….$20,000. Yes, you are reading that correctly, 20K, a far cry from 240K. IT’s going to be a long fucking day. I asked what was so unrealistic about wanting the full term of the policy the mediator replied that isn’t the goal in mediation and that the goal was to come to a compromise which by definition would be less than original. I said I didn’t want his answer I wanted theirs. Be carful what you ask for. I countered with $230,000 plus fees. I got my answer from opposing counsel with their counter of 21K that being they didn’t think I would live that long. I shit you not, the mediator said to my face! These motherfuckers didn’t think Id live long enough to receive full benefits on a policy I paid for through my employer. FUCK FUCK FUCK. I am now negotiating the value of my life, unreal and totally dehumanizing. Mediation lasted almost 8 hours, I wanted to go stop at the half way point telling them to fuck off I’ll see them in court. Then, were we (my lawyer and I) were handed a new piece of evidence. A contract between my employer and the insurance company! Completely different wording than the one between me the employee and the company. And this one trumps the contract I have with the company. I am freaking out, my lawyer is pissed that this wasn’t shared in the very beginning before we even went to mediation. A move you would see on TV. Now it is explained to me that if I choose to go to trial, which could and would take up to 5 years to conclude one of the options that is realistic is that the judge could decide to make me do the process all over again but with a different insurance company specialist to determine my fate. Which could lead to three more denials and another possible court filing. Reggie Roby just kicked me in the balls!

By this time I had asked my lawyer to just sit there and make sure I don’t say anything to get me arrested as now I know I need to fight for every fucking penny I can get or I am screwed. I know I don’t have the cabbage to fund this legal battle, who would? Not the people that actually need this policy like me that’s for sure. We went back and forth not even close to each other and no one was budging. On the eighth hour I just said fuck it, 40K or I go to court promising to make it a public relations nightmare to which my own attorney pulled me aside and said he doesn’t operate that way and wasn’t fond of my tactic. Let’s just say the drive back was interesting. I did get the “40K” and the mediator actually had the balls to compliment me and said I should have been a lawyer. I politely said kiss my ass. Opposing counsel asked if she could meet me face to face! I politely replied “you didn’t want to mediate face to face so you too can kiss my ass and to fuck off”.

So, what did we learn?

Don’t tell your employer until the last possible moment.As soon as you obtain your diagnosis, save as much money as possible, lawyer up.

Once your employer knows, any meetings with HR take a family member, trusted friend or your lawyer with you! You are in a vulnerable state and need extra ears you can trust to make sure you hear everything correctly and to help ask questions. They have a team you should too.

Make your employer fire you, I didn’t, I believed the hype from the company and my pride as I was only fired once in my life and that was in high school. This is extremely important especially if you need to pursue litigation.

Ask your employer to not only provide you a complete copy of your long term policy but also if they have a contract between them and the insurance company and get that copy.

Did I say lawyer up ASAP? It sucks, takes away from money you need to live. Lawyers always make it out on top on both sides. That’s a crime in itself. Obtaining one right out of the gate increases your odds of not having to litigate down the road.

FMLA and Americans with Disabilities Act won’t help you in this fight. Yeah, they get you ramps at the office and so on but once you are out of work you are on your own.

What it comes down to in litigation with these matters, it doesn’t matter what facts, errors, mis findings or any other “evidence” you think you posses to prove how they lied, cheated or whatever to prove you deserve what you paid into, all that has NO IMPORTANCE, NO IMPACT on your case. Your case is about contracts plain an unsimple. Yeah, that’s not a word but I don’t give a shit it's quite defining. It’s all about the contracts. You can thank lawyers for this purposeful design. Good luck finding lawyers to fight this and create change.

I know this was a pretty long read and I appreciate that you read it (totally assuming, don’t crash my plane here just say yeah Tim, I read it all). I hope it helps all of us. I hope it finds it way into someone’s hand that actually wants to go to our embarrassment of a government and fight for something that can make an immediate impact on those that don’t just get PD but any other issue that requires them to go down this road. I am always willing to provide a voice and information it’s been my problem of finding someone to listen and then act. Good luck.

Be well.



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