Hi all,

I have just registered to post to this site even though I have been reading the postings for awhile now.

I was diagnosed with HD in July 2007 after struggling for 5 -6 years with symptoms that my dr's could not explain. When I finally convinced my dr that I thought I had MS that started me down the road being tested for everything the could think of with everything coming up negative. It was over a year before I was tested for HD after a chance conversation I had with my mom. I did not know that HD was in our family, but I guess I had 2 aunts and 2 uncles that had HD but their symptoms did not started showing until later in life. I also had a cousin who committed suicide in his late 20's because of HD.

I was just to my neurologist on June 25 and he feels that I have progressed far enough that he wants me to go on disability.

Thanks for reading

MEL

Hi Mel and welcome Oh my gosh, by the time you finally got your diagnosis, you must have been glad just to finally know what was wrong. I'm 51 and in very early stages, and i'm on disability too. How do you feel about going on disability? Do you have a job that you really enjoy and will miss working, or do you feel it's time too? Glad you found us

That must have been a shock to get that diagnosis. Many or most people here have at least some warm up period to testing for HD themselves. Glad to meet you and keep on posting.. it's good for ya..

Welcome. I'm glad you are here.

Sounds so much like my phd...he was told to stop driving and working and file for SSD..he was adopted so we did not know why he was acting the way he was and i also thought he had MS...and we ask our Dr. to start running test for that...1 1/2 months and many neurologist later we were looking on the internet wemove.org and came to Huntington's Disease and it was the exact progression of my husband for the 5 years previous...so we were the ones who took the paper work in on it and ask our Dr. to run the DNA...sure enough!!!

welcome to the forum . One of the great benefits of this sight as well as the "Lighthouse" sight is the knowledge you will glean from everyone else's hard work . Knowing others who might share some of your own challenges . Finding encouragement to take a pro active course for yourself . Seeing that others have taken the challenges HD has given in their lives , and how they cope or even better what they have done that didn't work . all my best . db

Welcome to the forum Mel. I can imagine the shock you had upon hearing your diagnosis. I didn't even know what HD was when my Dad was diagnosed. We're glad you registered and posted. Lots of great advice here!

Patty

I would like to thank all of you that have taken the time to read my first post. When I found out my test results it was more a shock to find out that they finally identified what was wrong more than finding out I have HD. By the time I was tested for HD I had gone through testing for everything under the sun and I know they had to think I was some kind of nut case ( at least I know I don't have to wory about AIDS ).

It has been a long time since I can say I have felt normal. Starting back in the spring of 2000, we had just moved into the house we had just built and everything was going great. We had alot of landscaping to do and I noticed that I was getting tired easier but I just put it off to working the night shift and not getting enough rest and the doctor said that my main arteries to my heart were contracting when they would become distressed so now my problems were just my heart. After a couple more years I started noticing twitching in my hands, espicially when I went someplace where there were crowds, and I was jerking more again I had a reason for this because it seemed like the more stressed I was the worse it would be. Finally in the spring of 2007 I saw a Larry King show where he was interviewing someone with MS and the syptoms were just like what I felt mine were. I did some research on that and Parkinson's and knew from what I was reading it had to one of those two. I had read about HD but must have dismissed it in my mind because it is inherited and since I convinced myself that what we had in our family was Parkinson's I never brought it up with my neuro.

As for my job and disability it has been a tough decision for me but have decided to go out on disability. I love my job and enjoy getting up in the morning to go to it. I am a mainframe Systems Administrator/Systems Programmer and it is the wide variety of what I do on a daily basis that makes it such a great job. The only problem is that my company is pushing to get off the mainframe and go into an open systems enviroment. This has lead to alot of stress within our whole department because they have talked about rehosting to a Unix based system, outsourcing, and other options. With this type of uncertainty I feel that maybe this is a sign. I can get STD and LTD through my work and it pays 60% of my present salary and that would get me by until I can get on SSD and then I would still collect LTD less any amount I would get from social security. I guess I feel take the money that is guarenteed to be there instead of waiting to find out if I will have a job in six months and not have the option of disability.

My biggest problem has been my siblings saying that I have been in denial about having HD. They think this because I have refused to let this take me down without a fight. They think I should sit around and not try anything for myself. Sure I have balance issues and my memory is not always that good but I still want to live life. Also because I take my time making decisions about what needs to be done. I do think slower than they do and in my mind I have to know what I am doing is the right thing but that doesn't mean that I am avoiding it. Like I told them I live with this on a daily basis and if I don't show emotion its because I am drained and tired but it never leaves me. If they understood what I go through on a daily basis they wouldn't push me to go on disability because then they would have to think that I am losing what little social network I have. That was the hardest part about my decision is who do I socialize with during the day. Just because they are very social I am just the opposite and have a hard time making friends.

Sorry for the long post, just wanted to respond to everyone and give a little more about myself.

Thanks,

Mel

Thanks for sharing. It sounds like you have gien much thought to your decisons.

Mel, it sounds like you are being very smart about this. Definitely get your disability while you still good benefits from your workplace. You know, as for the social aspect. You dont even have to think of this as a disability or hd thing. Anytime anyone chooses to leave their job, say a woman decided to leave her job to be a stay at home mom, anything like that, their is a crush to the ego. I know anytime i lost a job, i was quite devastated, because your job kind of defines who you are. So just know that to be a bit sad about losing a job is normal. I also have trouble socializing, but just give yourself time. You might find with your new time at home, that you might like to join a gym or something, or you might find something that you like doing, that will involve going out and meeting people. Or you might be more like me, and decide it's ok not to be a social butterfly lol Anyways, i think you're being very smart about all of this.

Mel,

Stick with life Mel. It's the only good game in town. You have to do with your life what YOU want, not what others want. They won't die for you when it's time will they?

Welcom, Mel!

I was a mainframe software developer for many years (more than I care to admit!)

I'm currently on disability retirement.

What do you think you would miss most - were you to retire from your job?

jl

mel,

welcome...
good choice to 'retire' early, and persue other interests...

have you thought about running a blog?
have you thought about joining a book club?
how bout taking an art class?
do you like gardening? cause you could join the orchid society
or a sustainable gardening group...
do you have a dog? you could do a training lesson with your pet...
there are church groups, democrat or republican affiliated groups...

well you get the point... if you have no desire to really go out
far and socialize, make sure to get to know people in your local
diner, library, corner store, starbucks, pet store, or next door...

and if its work you will miss, volunteer...
my phd was layed off work, when the business was bought out...
his friends want him to volunteer at glide memorial church,
teaching computer skills to homeless and low income people...
it would be good for him to keep busy and still interact with
people in a positive way.

anyway, we will be talking more later i am sure. so
again welcome...

I have h d to the only good thing about it no pain for me

Hi Mel,
welcome to this site. Everyone here is very kind, understanding, and "gets it". HD stinks, but somehow we all get through the changes. I would say the hardest part for me is the fear/guilt of possibly having passed the gene to my two childen. The second hardest part is accepting the changes....I used to be extremely social, now I prefer small intimate settings or being alone. I used to be the first one to jump in and volunteer at my kids' school or my husband's squadron....now I sit back and watch. Our house was always the house where kids gathered and parties were thrown, now I prefer a calm and quiet environment. My husband jokes and says those changes are not HD, they are the result of maturity and wisdom!!! He's probably right!!!Anyway, every day is a gift. Find your niche and go for it!!!

I have h d the only good thing is no pain