I am a 50 year old at-risk female currently working in a professional career. I believe I am showing some "softer" signs of HD with my memory, concentration, and multi-tasking ability decreasing. My employer does not know of my at-risk status (some of my closer co-workers do). If I do have HD, these problems will obviously get worse and I fear the days of embarrassing myself, letting coworkers down etc. What if I at some point get fired for under-performing? (I currently have a very good performance record over the years). Will I then test and be able to go back and apply for LT disability (which is a covered work benefit)? Anyone with this experience who wouldn't mind sharing?
PS. It would be financially difficult, but not impossible for us to make it without my income.
Thanks friends,
juliew

Hi Julie,
This is my first time posting as I have been a lurker and I need to tell you about our experience. My husband has always been very open about his risk of having HD, even when starting his last job. Turns out his boss' father in law has HD as well. After a few months working at that job, he was starting to show signs of HD (he is 36). He felt like every day he was screwing up something and it was really taking a toll on him. He finally decided to get tested. The funny thing is, the Human Resources guy was the FIRST person we talked to about it. A company cannot ethically fire a person for have a genetic disease. If they did, I am sure you could fight it. Anyways, we got all the information we needed for LTD.

My husband told ALL of his coworkers about his testing and you know what? They were so supportive. He was blown away at how sensetive and caring everyone was. He found that once everyone was aware that he might have it, they were more helpful and understanding on his "off" days. It was a blessing.

My husband got his results on May 8 of this year. We thought he would have years left of working, but he also hurt his knee one morning getting out of bed and thus LTD was started a little earlier than we anticipated. He was only at that job for a year but it was a blessing because he now has LTD and a lot of things are taken care of in our future. I hope that helps, just be open and honest.

Julie,

My husband started having troubles early on with work. He had to stop driving for a living when he lost his licence. After that he wanted to keep working so he began manual labour jobs. He was fired from a lot of places because he couldn't do the work or would leave because of the stress.

The last place he worked at knew of his HD status. When his neurologist said it was time for him to go on LTD he went and told his boss. His boss was very supportive, and had said that he could have kept finding things he could do.

Hey Julie, how are you What I have read a few times on the forum is this. First, the fact that you have a good job with benefits is excellent, but, you don't want to wait until something big happens and they fire you, because then you would lose all of your benefits. From what I have read, what you want to do is this. When you feel you're at a point that you are, or might, make mistakes on the job, you HAVE to do the following, Before getting fired. First, I wouldn't tell anyone about the possible hd yet. If something is happening at work, and you think oh oh, I made a mistake, don't wait to get fired, you absolutely have to jump the gun before they do, or you lose your benefits. So, if something goes wrong, this is what you do. Immediately, take a sick leave for several weeks. Once you put that in motion, they can't fire you, and you wont lose your benefits. Then, while you're on sick leave you get tested. If it comes out positive, you tell the doctor your job is being affected, and you need the doctor to approve that you are symptomatic, and not able to perform you job any more. Then, you tell the company, once you have all this done, tell them you are leaving on long term disability, and then you can tell them why...hope this helps

Hi Julie,

I was in your same situation. I started with the same symptoms and they were affecting my ability to do my job. My employer did not know, but there was one good friend I confided in who was able to help me when I needed it. At this point, since I knew my job was being affected, I got tested. My blood test came back positive and I went to a HD Center of Excellence (my test was with my local GP) to be evaluated. I took a neuro-psych test and it showed a decline in my abilities. I kept working for about 10 months after that until I felt I couldn't "fake it" anymore.

One reason I was able to keep working for that time is that I was at a remote site and I was the only person in that job so others weren't right there beside me to see how things had gotten worse. It was determined our site would reunite with the main offices and I knew it would be as plain as day when I had to start attending meetings with others as well as others seeing my work directly. I was in the IT field and had my remote site set up so well before I was symptomatic that it sort of ran itself for months.

When I knew it would be apparent there was something wrong, I went back to my HD neurologist. My work-related problems had already been documented and told her I didn't think I could work anymore. I was warned on this forum about taking jobs with lesser responsibilities (and less pay) because your long-term benefits and your SSDI is related to your income when you stop working. She wrote a letter for me to take to HR stating that I had Huntington's Disease, what it is, and that I was unable to continue working. I had a meeting with my immediate supervisor and explained the situation. Then I talked to HR. My sister did it the opposite way. She talked to her HR department and then to her supervisor.

At that point I went out on short term disability for 12 weeks and then long term disability for the required time. I had to be out of work for six months before SSDI would kick in. We hired someone to help in getting my Social Security approved because I was denied the first time. He worked closely with the HD Center of Excellence and it was approved the first time he submitted it.

One thing that I want to mention is that it was a huge stress reliever to stop working in a job that you were once highly qualified to do and now failing at. I think it really helped my symptoms. They were still there, but I didn't feel like they were beating me up all day, every day.

Good luck and let us know how you get on.

Patty

Julie, One other thing... the closer you get to 55, the more it is thought that you are just trying to get on disability before retiring. I know this is silly from our point of view because we have symptoms that are huge in our brains. But my sister, who started the process at 54 (or just before, I forget), ran into it. I guess with HD's cognitive symptoms it's not as apparent to the outside world as physical symptoms would be.

As far as your performance record - I had received the highest ratings on my yearly appraisal reports for as long as I can remember. Then I had to explain both to my employer and to my neurologist why I was getting high ratings if I was symptomatic. The fact that I worked independently and had a good work ethic came into play. I was able to show specific areas to my employers where things had fallen by the wayside. I gave specific examples of problems I was having. I also told them I was getting help from my friend. After that, it was no problem. They weren't looking to make me prove anything, just trying to undestand.

Stay strong and be an advocate for yourself. If you aren't able to do that, have someone do it for you.

Take care,

Patty (again!)

Thanks for your advice friends. Barb, it was good to hear from you! Hope all is well with you. I think I may start counseling to sort through my thoughts about testing/working etc. The good news is I do have a supportive family, LTC Insurance and many other blessings in life.

I'm in a similar situation where I am currently working but everything gertting harder to do. Father had HD and I was tested positive a year ago.
At first had a hard time dealing with the test and my neurolist put my on Lexaprowhich helps. I put off telling anyone at work that had HD until I
had a bad day. I work in customer service and forwared a e-mail I shouldn't have. I decided at that time I needed to be up front with my employer.
I started with HR and then went to my supervisor. In this case they were both very supportive, but it was one of the hardest thing I have done is to
tell a few of my closest coworkers. Glad I did becauase my boss has dropped several of my duties including traveling which was getting very haard for me to do. Coworkers have been very supportive and my only regret is I didn't tell them sooner. Right now I am hoping I can keep going until I qualify for LTD. I do regret not looking into long term care insurance. Might be a good idea to look into that before getting tested.