If You're Working and Start HD Symptoms


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-----Original Message-----
From: Phillip J. Hardt [mailto:phardt1@home.com]
Sent: Sunday, December 26, 1999 4:24 PM
To: Huntington's Disease Discussion
Subject: If you're working and start HD symptoms

[Paragraphs added for clarity.]

Here's what I did to make it to a point where I could meet the minimum requirements for disability medical coverage for the family. This, by no means, is the only way to do this, just an example of what worked for me.

Once I had gotten back my "positive" blood test results I didn't know whether or not I should tell them at work. I was already experiencing symptoms such as lack of coordination, loosing my balance frequently, walking tilted over to one side, and forgetfulness. I had read the horror stories about those who were demoted because they couldn't handle their current job responsibilities and then, when they finally went out on disability, they went out at the new, lower pay scale, not the original one where they were at before. I had told several of the guys I was working with the closest on a day-to-day basis about what I had so they could "cover me" if necessary. They helped me tremendously.

However, one of the other guys in my department decided to tell Human Relations (HR) that I was dangerous to myself and others while on the manufacturing floor. I knew the cat was out of the bag, so to speak, and that I had to "'fess" up real quick.

That night I printed out a bunch of pages from the internet and highlighted the areas that I thought were, or would be affecting my performance in my current job. I also included the pamphlet from the HDSA titled "Huntington's Disease, A Disease of Both Mind and Body" with the paragraph under Symptoms highlighted. I made an appointment with my department head, Bruce, right after I got into work the next morning and gave him all of the information. I also told him that I was very concerned about how much longer I would be able to work, and for my family's welfare: my concerns about being demoted and how that would impact us financially, my concerns about them being covered by medical insurance, and questions about short and long term disability coverage that I had already enrolled in. He didn't have the answer to all of my questions but told me that he would have a friend of his from the HR department, who he trusted implicitly, give me a call to explain everything. This was quite a relief! I had done what I could and left the rest up to the Lord!

By that afternoon I had already received a call from this woman from HR to set up a meeting with me tomorrow and had already received an e-mail from the bosses secretary telling me that I was to wrap things up in the next couple of days because he was moving me to the main office to help another group of "blackbelts" work on their project. It would be a desk job at the same rate of pay! I would be troubleshooting the new materials planning and acquisition program on the computer and writing correction notices to the programmers for improvements and modifications! When I met with Joan in HR she told me that I was just ten months away from my ten year anniversary and that if I could make it that far before going out on disability, I would also be able to continue our medical, mental health, dental and vision care policies while on disability, and at the same premium that we were currently paying. This seemed hard to believe it was such a special blessing. My focus now turned to how to make it those remaining ten months.

I had already figured out that stress and being tired affected me adversely and aggravated my symptoms. It was a hard decision to make, but I decided to quit my moonlighting job teaching computer science courses at the local community college four nights a week and Saturdays. I also hesitantly asked to be released as 2nd counselor (youth counselor) at church. My goal was to eliminate everything that I could that could wear me down prematurely and
potentially prevent me from making it to my anniversary date. It worked!
Because of shedding everything else, I was able to put all of my energy into
my day job with insurance benefits and make it! I went to work and came
home and became a couch potato. I also started eating breakfast and lunch regularly to give my brain all of the nourishment I had deprived it off over the years by never eating breakfast and only eating lunch when I got a chance. Quitting my night job meant reduced earnings for the next ten months, but would guarantee us enough money to make it on once LTD kicked

In another two weeks Joan got back with me again and told me that since I had signed up for short (STD)and [sic] long term disability (LTD) that she found out that I could start my six months coverage of short term disability prior to my anniversary and that even though I would be out on disability and not working, it would still count as continuous service. This was a tremendous relief because now I didn't have to make it ten months, only four! However, being as stubborn as I was (and still am) I wanted to make it as long as I could! The way our two disability policies worked was that our LTD policy would not begin coverage until after I had been out for six consecutive months on STD.

During the six months on STD I had many doctors appointments to satisfy the insurance company's requirements and to determine if I would ever be able to work again. If you haven't signed up for short or long term disability, and are "at risk" I would strongly encourage you to as soon as possible. Our LTD policy pays us 60% of my gross wages when I was working. This doesn't sound like very much but it's also not taxable so it works out to be what you were originally taking home after taxes before! LTD will be reduced by the amount of Social Security Disability you start getting but your "take home" will still be the same.
Hope this helps someone to prepare now while they can!.......Phil


Phil Hardt     phardt1@cox.net    602-309-3118


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