Huntington's Disease Support Group
Huntington's disease (HD), formerly known as Huntington's chorea, is a rare inherited genetic disorder characterized by abnormal body movements called chorea, and a reduction of various mental abilities. The symptoms of Huntington's disease occur gradually over time - there is no sudden loss of abilities and it is hard to determine when symptoms initially occur.
Hi , my Fiancee and i known each other for like four or five years , He told me there was a possibility of him having HD , He was up front about it when first started dating , which was nice because i also was in that same position of telling him what i had. Over the past year ago we gotten back together , He had gone to the mental hospital and they tested for one gene. He has one gene but has go back to get tested again for the second gene. Then he asked marry him. I thought finally he was willing to settle his life down. He said he didn't want waste his time away because he thinks he doesn't have much time left. well now i think more and more about it now starting to scary me what its going be like when were married . I know i probably end up being his care taker because i have too big heart. well the last couple months he has developed i twitch in his shoulder , its gotten worse. and i have seen him loose his balance time to time when the twitch is bad , sometimes i think he has mood swings , but time to time he make decisions like going someone and changes his mind. Is that anything to do with Hd? Or like going from one extreme to other. Also been hard for him to do daily activities such as dishes , cooking ,and etc. He can no longer drive anymore , i won't let him. I just looking for some people like me to talk to about this , sometimes i feel like its not topic to be talk about. We go back forth about whether to have a child or not. but i guess its something that isn't a good idea according to his doctor. so how i protect myself by not bring a child into this world that may or may not inherit HD.
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
Do you know what generation of HD sufferers he is in? Have either of his parents got it?
HD can affect different people in different ways, it depend in which area of the brain it manifests. My husband's grandmother struggles with memory and speecha nd has recently started to struggle with swallowing food. Some get shakes, some I think can have fits. One of my husband's aunts has palsies. If you need to talk, I'm here :) I too will end up as my husband's carer if he does have it, but he would do the same for me.
Just as Elslok states, HD effects people in a number of ways. My father's looked like his sister's and my sister's HD looks like theirs. It wasn't until I attended a support group I learned of the different ways HD effects families.
My sister currently lives in a nursing home (going on 40) with a specialty floor for HD (and now other dementia related and neurological disorders). Despite the differences in HD there are many similarities. You should learn as much as you can. Look for Centers of Excellence, they are extremely resourceful.
There is also something called Juvenile Huntington's Disease. Young children, teenagers are also vulnerable to manifesting symptoms. My sister and my aunt likely manifested in their teen years, although it didn't effect their daily life until their 20s. My father was 30 when diagnosed. But my father's aunt was in her 70s when she manifested symptoms. Age is not a factor when considering the implications of HD, although many families generally have an age range for onset, it is not a guarantee one will not manifest sooner or later.
I hope I'm not overwhelming you, truth is this is just an overwhelming topic. Look for information and supports, they are out there. You should learn what you can and make your decision. There are no right or wrongs. Having children, not having them, marrying or not. It's always a personal decision only you have the answer. Either way you chose to go, learning about HD will help you.
and just a PS- I met a gentleman a few years ago who very much loved his wife with HD. He could not stay with her, but he continued to be a support for her and remained a part of her life. No doubt he still loves her very much. Everyone has to live with themselves so you need to really consider what you are able to do. Counseling helps, usually can be found at Centers' for Excellence as well.