WeAreHD.org - The Social Support Network for People Living with Huntington's Disease

Carla

Hello everyone

                          New here. 47 years old. Been a nurse for 15 years. Currently working. Maternal Grandfather (now dead), Mother, Mother's brother, and half-sibling all positive for HD. Increasingly symptomatic for the past two years...but compensating...adapting...a fair amount of denial...finally scheduled CAG testing...in the midst of this (at work) co-worker noted staggering/stumble and reported it to Unit Supervisor  "...possibly drunk or something..."  When I was open with her concerning the possibility of HD...she managed to share this with the facility (and even a consultant from State who was in her office later that day) and suddenly is worried about my "judgement" and demanding a letter from my physician...even though my evaluation in June was glowing...(everything either Above average or Excellent) I am so angry/embarrassed/betrayed/pick an adjective...now not only completely stressed over conclusive testing but dealing with this... *sigh*  Stupid people shouldn't breed.

Thanks for letting me unload.

Carla

 

12 months ago

jenny

Hey Carla, I can't believe there are such insensitive morons! Unit Supervisor should have kept this confidential. If your work is impaired by possible symptoms then a little decorum wouldn't have gone astray. You sound like you are pretty sure you have it. Denial is part of the self preservation mechanism...we've all been there. I sympathise,...not in a patronising way, but as one aquainted with the disease. My husband is in mid stage and failing.....I have 2 kids at risk and 4 grandchildren....none of us knows what the future holds...none of us are even promised a tomorrow. So know that we care what happens to you and are all ears when you need to offload.

All the best, Jenny

12 months ago

wanda

hi Carla   

Sorry to here that people are that insenstive, I guess thats what I'm up against as well, I was tested possitive just over 2 yrs.now since nov,30/05. people at my work knows I have huntingtons disease but , I really don't think they really know what it is . they know that I 've gone home a few times because I start crying because the stress at my job is to much for me for me to handle I work at tim hortons. my father had huntingtons, I have 4 sisters,1 brother,and many neices and nefews that are at risk my brother and sister s do not want to get tested they just do not want to know.as for myself  I wanted to know because I already has signs that it was there  I didn't want it to be true but it was. I'm also 47 soon to be 48.

best of luck to you. wanda

12 months ago

Jahnnie

I TOTALLY agree about stupid people not being able to breed. I am not sure about what the laws are in Indiana. But, in Massachusetts and New Hampshire, letters cannot be demanded from your physician without your consent and signature. Also, your job should still be safe as long as your symptoms don't actually affect your performance. They could be potentially be looking at a lawsuit if they aren't careful. Don't let dumb people get to you- you have much bigger fish to fry

11 months ago