Living (Gene) Positive, Is easier said than done...
11 Members
Created by Laura Lu

Living (Gene) Positive, Is easier said than done...

There  are so many people on here...online and other support systems who are living with HD, living with someone who has it, etc. This group is especially for us who know it's coming. They say "Live Positive" but it's so much easier said than done. How many times a day do you question every shake you have, or when you trip or fall? "Is this it?".

 

I recently learned this about us diagnosed gene positive:

"Ninety eight per cent of  patients exhibited psychiatric symptoms,the most prevalent being dysphoria, agitation, irritability, apathy, and anxiety. Symptoms ranged from mild to severe and were unrelated to dementia and chorea." (Dr. Albert Wallace Deckel)

I find that hearing others struggles, challenges, good news, etc. helps me when I am down. So, that's why I am tryin' this out. 


Are you single and gene positive, wondering how your life will play out? Are you married, or in a relationship and feel like the HD bomb has changed things?

I think about things like that. (that sounded like an info-mercial)

I sometimes I wish I had more friends who think like that too. My friends are still arguing over who has a slutty looking shirt that she borrowed and didn't return. Doesn't help!! It also does not help that people my age (28) have no idea who Woodie Guthrie was, so there isn't an easy way to explain this condition.

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  • Diane and Keri

    I understand how this feel. You are not alone. I definitley can relate to what you are saying and NO you are not nuts.  Hugs and thanks for sharing this thought..I thought about this also and wasnt sure if I was Nuts also..but no - its just hard to live with HD because it's easier said than done- especially for those who dont want to be part of it.... Diane and Keri

    4 weeks ago.

  • amanda

    I totally relate to what you said about the things your friends talk and argue about. I see things so differently now, sometimes I feel like I'm on the outside looking in on these people.

    4 months ago

  • Helen

    Hi Laura,



    Yes I can relate to living gene positive, i was diagnosed last may and you go thru periods of real down times, i did when i my dad tried to kill himself before xmas he is in mid/late stage and has been very agitated and depressed etc.    He is better now his medication has been sorted.    But when i see him when he is really bad or frail, and looking so very thin and fragile, i get panicky about my own future, seeing mum struggle with the changes in dad is absolutely heartbreaking, and its devastating for me.   I have a brother who remains untested, i think he is scared to know, but it is a brave decision to find out your HD status, but its hard either way.        Helen xx

    4 months ago

  • Laura

    http://www.eagletribune.com/punews/local_story_065221835.html

    5 months ago

  • Laura
    Email from Leo, NYA Social Worker Re: individual in HD community harrassing/sending unwanted photos to females.

    From: HD Center of Excellence [mailto:info@iuhdclinic.org]
    Sent: Sunday, January 31, 2010 7:37 PM
    To: info (AT SYMBOL) iuhdclinic (DOT) org
    Subject: Situation update

    Recently I have again had several female members of the NYA contact me regarding inappropriate contacts from a particular individual.  Unfortunately, my previous efforts were not successful in stopping the activities.  Because his actions have resurfaced, I have done exhaustive research as to what can be done and have contacted the Special Investigations Unit in Arizona and a friend’s son who works at Facebook.  I have also spoken to the man who has been reported to me. 

     

    He is aware that if he is in need of assistance in dealing with his status regarding HD, I and other professionals are available to help him.  He is further aware that his actions are not just immoral, but are also illegal.  He has assured me that all contact with members of the NYA will stop.  Please also be aware that he confirmed that he has established new profiles under different names on social networking sites. If you or anyone else is contacted by him, please let me know. 

     

    I appreciate that all of you have contacted me.  I hope that all of the problems will stop.

     

    Leo


    7 months ago

  • Laura

    I know Dina....I am already discovering this...and you are right again as usual.

    7 months ago

  • Dina

    Laura dont take on to many projects right now there is a baby thats going to be here in April, and your butt better be here with anthony to visit me...LOVE YOU

    7 months ago

  • Laura

    http://www.eurekalert.org/pub_releases/2009-11/bi-rfp111309.php < from Joseph's wall, posted by his friend Nikki.

    8 months ago

  • Laura

    Your the best Haley

    8 months ago

  • Haley

    I really connect with what you said in the intro to this community, "How many times a day do you question every shake you have, or when you trip or fall? "Is this it?". "  OMG, I've had an eyelid twitch that's been off an on (more on than off) that started the day after Thanksgiving and just won't quit. I'm pretty sure it's just from stress or lack of some random nutrient, but still....it makes me wonder.....and that always sucks.

    8 months ago