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Re: [Huntingtons Disease Support Club] Different things

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  • Jeanette Kiefert
    Hi Gayle, Thanks for your support, and I apologize if my questions are a bit different to exactly understand, but english is not my born with language. But
    Message 1 of 5 , Mar 1, 2005
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      Hi Gayle,
      Thanks for your support, and I apologize if my questions are a bit different to exactly understand, but english is not my born with language. But what I meant was actually both when I come to think about it.
      That is: how you feel about being HD+ and about the symptoms you experience?

      Love from Jeanette


      ----- Original Message -----
      From: Gayle Kingsbury
      To: huntingtonsdiseasesupportclub@yahoogroups.com
      Sent: Monday, February 28, 2005 10:42 PM
      Subject: Re: [Huntingtons Disease Support Club] Different things


      Jeanette,
      You asked about those of us who have HD and have symptoms. I'm not sure I understand your question about our feelings. Are you asking how we feel about being HD+ or about the symptoms we experience...?
      I am an open book for anyone with questions - meaning that I am willing to discuss anything I have any experience with. We just have to remember that everyone is different.
      Jeanette, if you reword your question, I will do my best to answer 8^)
      Gayle
      Bremerton, WA USA
      wfgak@...

      [Non-text portions of this message have been removed]


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    • sue_twin2
      Dear Jeanette, Please don t feel you need to apologise for not being so active here – I m sure we all understand how time just slips away. You were so
      Message 2 of 5 , Mar 1, 2005
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        Dear Jeanette,

        Please don't feel you need to apologise for not being so active
        here – I'm sure we all understand how time just slips away.

        You were so accurate in what you said to Kelly about HD in a family
        being sh*t as it affects everyone and that everybody deals with it
        differently. Many just don't know how to handle the situation and
        avoid it so the HD family becomes isolated. I suppose it is like
        people's different reactions to a death – some will offer
        condolences and support while others feel they don't know what to
        say or how to help so either avoid mentioning it or avoid the
        bereaved person. At least these responses let you identify the
        people who will be your true friends.

        I totally understand what you say about not having further children
        as it was the same issues that led to our decision not to have
        children despite both wanting our own family. Both of us had chosen
        careers working with children so had the opportunity to shape their
        lives, hopefully for the better, even though we couldn't have our
        own. I must admit, however, that my heart ached and even now I have
        my moments of sadness.

        You asked how I have managed to stay positive after living with HD
        for 35 years and comment that this is admirable – thank you for
        the compliment! I feel everyone dealing with HD in a positive way
        deserves admiration, none more so than the people who have HD
        themselves. There are many examples of people commenting how they
        never imagined they had the strength to cope and even saying that
        having HD in their life has enriched them and made them a better
        person. I have been extremely lucky to have family and friends who
        fall within the "true friend" category who have been there
        for me when I wasn't coping. I have had episodes when I have felt
        completely overwhelmed but, thanks to my true friends and
        professional help, have managed to come through. The answer seems to
        be that you have to confront HD and not pretend it doesn't exist
        hoping it will go away if ignored, and you have to find good support
        from true friends amongst whom I would include professionals who are
        genuinely willing to walk and learn with you, even if for only a
        short time, as you travel down the rocky road of life.

        I am glad to see that Wendy and Gayle have responded to your
        question about being HD+ and hope others do too. If you haven't
        already seen them, there is a series of articles at HDAC by Kelly B
        that you may find very useful:-

        Insights into Huntington's at http://tinyurl.com/475u5
        Denial at http://tinyurl.com/6bcrr
        Still The Same at http://tinyurl.com/3txa9
        Anxiety and Panic Attacks at http://tinyurl.com/4x3nl

        I had better close before I write yet another book! Thinking of you
        all more so than usual as you await your sister's results today.

        Much love and warm hugs,

        Sue
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