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12521Re: [Huntingtons Disease Support Club] College age kids say i change so much but i dont see it how to respond to them

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  • nightshade
    Mar 7, 2013
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      Hey Kerry.  My mother wasn't diagnosed until I was a sophmore in college.  We did notice she was changing, but we had no idea why. So all through middle and high school we saw *something*.  For my mom, it started with her handwriting.  It was always flawless, but it started to get sloppy.  Then she started dropping things.  She also became very suspicious and coniving.  It was hard to deal with her.  Even after she was diagnosed, she refused to believe it.  It wasn't until I tested positive that she started to believe there was a problem.  So, it's not uncommon for the person with HD not to see the signs.  It can be denial as much as just personality shifting.   
      As for your mom, you might need to ask bigger questions.  Has she *ever* been supportive and available to you?  Is this behavior new for her, or has she "always been like this"?  If she has been supportive and this behavior is new, she might just be scared or lost on how to act.  It would do you both good to talk about it.  If it's not new, you can't expect her to change.  Don't expect a miracle just because you're going through a rough time.  Leopards don't change their spots, as it were.  Getting into a good HD support group will probably help you tons.

      From: kerryweinmann <kerryweinmann@...>
      To: huntingtonsdiseasesupportclub@yahoogroups.com
      Sent: Monday, February 25, 2013 7:49 AM
      Subject: [Huntingtons Disease Support Club] College age kids say i change so much but i dont see it how to respond to them

      My name is kerry. I am 37 years old and been showing signs of this for 7 years but only receintly tested in 2012 for it because my dad died of a heartattck before he showed symptoms so i didnt know to look for it. I am married for 20 years in september to my wonderful husband. We have three kids ages 20, 18, and 16. My two older girls go away to college and come home every other weekend. When they do come to stay they always say that i have changed so much while they are gone. I dont see what they are talking about so i dont know how to respond to help them understand that i care and want to be here for them. Is this normal for my kids to feel and experience and is it normal for me not to see anything they are seeing.

      Also did it take your non huningtons parent my mother time to realize and come to terms with this. My mom has been very distant in anything i try to tell her it is sort of like playing a game with her about if my doctor tells me i am having swallowing complications and when i try to tell her she interrupts me only to have me listen to how she has severe swallowing troubles for years now and what trouble it has caused her.
      She doesnt seem to care at all and when i try to lean on her for support she just interrupts more. I can no longer drive. But she is always telling me she misses me and i should come over more often. Instead of her coming to visit me. She could careless about my appointments and what things they want to try. Then while were at christmas dinner with my entire family she walks around telling others how often she calls me by the way not but 2 times in 6 months bragging that she calles me all the time and helps me so much. This just makes me feel hurt and betrayed because its not true and if it was i would probably feel a bit stronger than i do. How do i handle this without hurting her if at all possible.

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