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  • blondebarber37814
    Susie, I am sure you ve seen more than you care to remember. It is hard. I am curious to know what everyone considers to be the final or last stages of HD.
    Message 1 of 10 , Sep 1, 2002
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      Susie, I am sure you've seen more than you care to remember. It is
      hard. I am curious to know what everyone considers to be the "final"
      or "last" stages of HD. My siblings and I thought we were there when
      mom went to the home but she has gotten SO much worse so fast. I am
      thinking now that even though she requires complete help for
      everything she does and can hardly feed herself(only finger foods)and
      we can hardly understand what she is saying now. I am not sure that
      this is the worst of HD. I now think that the last stages must be
      just unspeakably bad. No communication at all! Just lying in the bed
      all the time.Being trapped in the body that has failed her.
      What a future.

      Kristen





      In huntingtonsatrisk@y..., susie_que_56 <no_reply@y...> wrote:
      > Re: Kristen
      > You know there isn't much you can tell me about the mental side of
      HD
      > that I didn't see first handed. My what a scary thing it can be.
      > Frank my husband had the mental side but it was also the mean
      mental
      > stuff. Rages every night before bedtime, sneaking the youngest out
      so
      > he would be safe.... Hd is not a pretty picture in deed. Frank
      never
      > wanted to be kept alive either. I had the Dr make out DNR papers so
      > that once he was gone there was no bringing him back to suffer a
      > crule fate as HD can hand out! I still remember thinking that he
      > never wanted a feeding tube put in, so if he was starving how was I
      > going to handle him wasting away. Was I capablle of dealing with
      all
      > that went with the end stages of HD for him? I really had no choice
      > in thew matter. Just like you in many ways. We see our loved one
      > suffer through this disease and wonder why anyone who was good and
      > nice has to suffer so. It is really hard to put down just what we
      > feel like watching what they go through. But know any time you have
      > an outlet here.
      > You just take care fo yourself Kristen that is improtant too!
      >
      > Susie
    • brwnid_woman
      Good question!!!! What are the final stages of this horrid disease? Tommys mom hasn t talked or walked in 7 years now. The last two she has had a feeding
      Message 2 of 10 , Sep 4, 2002
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        Good question!!!! What are the "final" stages of this horrid
        disease? Tommys mom hasn't talked or walked in 7 years now. The last
        two she has had a feeding tube. You talk to her and she can't talk
        back except with her eyes. Oh, how it breaks my heart!! She does seem
        to recognize all of us though. Especially mine and Tommys son
        Jonathon. It's like her face just lights up when he is there with
        her.Other than having HD she seems real healthy though and I just
        wonder what are the final stages and how long will she linger? She's
        been institutionalized for 14 years now and in a care center. Anyone
        have the answer??????
        --- In huntingtonsatrisk@y..., blondebarber37814 <no_reply@y...>
        wrote:
        > Susie, I am sure you've seen more than you care to remember. It is
        > hard. I am curious to know what everyone considers to be
        the "final"
        > or "last" stages of HD. My siblings and I thought we were there
        when
        > mom went to the home but she has gotten SO much worse so fast. I am
        > thinking now that even though she requires complete help for
        > everything she does and can hardly feed herself(only finger foods)
        and
        > we can hardly understand what she is saying now. I am not sure that
        > this is the worst of HD. I now think that the last stages must be
        > just unspeakably bad. No communication at all! Just lying in the
        bed
        > all the time.Being trapped in the body that has failed her.
        > What a future.
        >
        > Kristen
        >
        >
        >
        >
        >
        > In huntingtonsatrisk@y..., susie_que_56 <no_reply@y...> wrote:
        > > Re: Kristen
        > > You know there isn't much you can tell me about the mental side
        of
        > HD
        > > that I didn't see first handed. My what a scary thing it can be.
        > > Frank my husband had the mental side but it was also the mean
        > mental
        > > stuff. Rages every night before bedtime, sneaking the youngest
        out
        > so
        > > he would be safe.... Hd is not a pretty picture in deed. Frank
        > never
        > > wanted to be kept alive either. I had the Dr make out DNR papers
        so
        > > that once he was gone there was no bringing him back to suffer a
        > > crule fate as HD can hand out! I still remember thinking that he
        > > never wanted a feeding tube put in, so if he was starving how was
        I
        > > going to handle him wasting away. Was I capablle of dealing with
        > all
        > > that went with the end stages of HD for him? I really had no
        choice
        > > in thew matter. Just like you in many ways. We see our loved one
        > > suffer through this disease and wonder why anyone who was good
        and
        > > nice has to suffer so. It is really hard to put down just what we
        > > feel like watching what they go through. But know any time you
        have
        > > an outlet here.
        > > You just take care fo yourself Kristen that is improtant too!
        > >
        > > Susie
      • Jo Ventham
        Talking about the final stages, what you have just said rings so many bells to me. My mum has also had a feeding tube put in in the last two years. She too
        Message 3 of 10 , Sep 14, 2002
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          Talking about the final stages, what you have just
          said rings so many bells to me.

          My mum has also had a feeding tube put in in the last
          two years. She too could only acknowledge me with eye
          contact, she used to look at me with big wide eyes. I
          then knew she knew I was there, this gave me some
          comfort. However my mum no longer has the ability to
          do this and she no longer gives me eye contact. She
          now sleeps the majority of the time, but at least she
          is peaceful. My mum has been into hospital a couple of
          times since the tube first went in. She has just come
          out after a second operation to replace a tube.

          I wonder how much worse, this disease can possibly
          get. Will there be frequent chest infections?? I do
          not know, but if anyone has this answer, it would be
          helpful to know.

          I am only 21 and my mother has been in a home for
          around 14 years. They say, that no two people with HD
          are the same, so it is difficult to know what will
          happen, but at least we can draw of others experiences
          and feel confort in the knowledge that we are not
          alone.

          Jo

          --- brwnid_woman <brwnid_woman@...> wrote: >
          > Good question!!!! What are the "final" stages of
          > this horrid
          > disease? Tommys mom hasn't talked or walked in 7
          > years now. The last
          > two she has had a feeding tube. You talk to her and
          > she can't talk
          > back except with her eyes. Oh, how it breaks my
          > heart!! She does seem
          > to recognize all of us though. Especially mine and
          > Tommys son
          > Jonathon. It's like her face just lights up when he
          > is there with
          > her.Other than having HD she seems real healthy
          > though and I just
          > wonder what are the final stages and how long will
          > she linger? She's
          > been institutionalized for 14 years now and in a
          > care center. Anyone
          > have the answer??????
          > --- In huntingtonsatrisk@y..., blondebarber37814
          > <no_reply@y...>
          > wrote:
          > > Susie, I am sure you've seen more than you care to
          > remember. It is
          > > hard. I am curious to know what everyone considers
          > to be
          > the "final"
          > > or "last" stages of HD. My siblings and I thought
          > we were there
          > when
          > > mom went to the home but she has gotten SO much
          > worse so fast. I am
          > > thinking now that even though she requires
          > complete help for
          > > everything she does and can hardly feed
          > herself(only finger foods)
          > and
          > > we can hardly understand what she is saying now. I
          > am not sure that
          > > this is the worst of HD. I now think that the last
          > stages must be
          > > just unspeakably bad. No communication at all!
          > Just lying in the
          > bed
          > > all the time.Being trapped in the body that has
          > failed her.
          > > What a future.
          > >
          > > Kristen
          > >
          > >
          > >
          > >
          > >
          > > In huntingtonsatrisk@y..., susie_que_56
          > <no_reply@y...> wrote:
          > > > Re: Kristen
          > > > You know there isn't much you can tell me about
          > the mental side
          > of
          > > HD
          > > > that I didn't see first handed. My what a scary
          > thing it can be.
          > > > Frank my husband had the mental side but it was
          > also the mean
          > > mental
          > > > stuff. Rages every night before bedtime,
          > sneaking the youngest
          > out
          > > so
          > > > he would be safe.... Hd is not a pretty picture
          > in deed. Frank
          > > never
          > > > wanted to be kept alive either. I had the Dr
          > make out DNR papers
          > so
          > > > that once he was gone there was no bringing him
          > back to suffer a
          > > > crule fate as HD can hand out! I still remember
          > thinking that he
          > > > never wanted a feeding tube put in, so if he was
          > starving how was
          > I
          > > > going to handle him wasting away. Was I capablle
          > of dealing with
          > > all
          > > > that went with the end stages of HD for him? I
          > really had no
          > choice
          > > > in thew matter. Just like you in many ways. We
          > see our loved one
          > > > suffer through this disease and wonder why
          > anyone who was good
          > and
          > > > nice has to suffer so. It is really hard to put
          > down just what we
          > > > feel like watching what they go through. But
          > know any time you
          > have
          > > > an outlet here.
          > > > You just take care fo yourself Kristen that is
          > improtant too!
          > > >
          > > > Susie
          >
          >
          > ------------------------ Yahoo! Groups Sponsor
          >
          > To unsubscribe from this group, send an email to:
          > huntingtonsatrisk-unsubscribe@yahoogroups.com
          >
          >
          >
          > Your use of Yahoo! Groups is subject to
          > http://docs.yahoo.com/info/terms/
          >
          >

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        • brwnid_woman
          Jo, Tommys mom has only had to have her feeding tube replaced once. I m not aware of infections. Her sister sees her daily so, I m sure she would have
          Message 4 of 10 , Sep 16, 2002
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            Jo,
            Tommys mom has only had to have her feeding tube replaced once. I'm
            not aware of infections. Her sister sees her daily so, I'm sure she
            would have mentioned it to me if had been a problem. Hers is in her
            stomach. Where is your moms? I think his mom sleeps alot. ( I often
            wonder why? are they tired?) But, she always has a smile in hr eyes
            when we visit and I really beleive she comprehends what we all are
            saying.



            --- In huntingtonsatrisk@y..., Jo Ventham <jlohotty@y...> wrote:
            > Talking about the final stages, what you have just
            > said rings so many bells to me.
            >
            > My mum has also had a feeding tube put in in the last
            > two years. She too could only acknowledge me with eye
            > contact, she used to look at me with big wide eyes. I
            > then knew she knew I was there, this gave me some
            > comfort. However my mum no longer has the ability to
            > do this and she no longer gives me eye contact. She
            > now sleeps the majority of the time, but at least she
            > is peaceful. My mum has been into hospital a couple of
            > times since the tube first went in. She has just come
            > out after a second operation to replace a tube.
            >
            > I wonder how much worse, this disease can possibly
            > get. Will there be frequent chest infections?? I do
            > not know, but if anyone has this answer, it would be
            > helpful to know.
            >
            > I am only 21 and my mother has been in a home for
            > around 14 years. They say, that no two people with HD
            > are the same, so it is difficult to know what will
            > happen, but at least we can draw of others experiences
            > and feel confort in the knowledge that we are not
            > alone.
            >
            > Jo
            >
            > --- brwnid_woman <brwnid_woman@y...> wrote: >
            > > Good question!!!! What are the "final" stages of
            > > this horrid
            > > disease? Tommys mom hasn't talked or walked in 7
            > > years now. The last
            > > two she has had a feeding tube. You talk to her and
            > > she can't talk
            > > back except with her eyes. Oh, how it breaks my
            > > heart!! She does seem
            > > to recognize all of us though. Especially mine and
            > > Tommys son
            > > Jonathon. It's like her face just lights up when he
            > > is there with
            > > her.Other than having HD she seems real healthy
            > > though and I just
            > > wonder what are the final stages and how long will
            > > she linger? She's
            > > been institutionalized for 14 years now and in a
            > > care center. Anyone
            > > have the answer??????
            > > --- In huntingtonsatrisk@y..., blondebarber37814
            > > <no_reply@y...>
            > > wrote:
            > > > Susie, I am sure you've seen more than you care to
            > > remember. It is
            > > > hard. I am curious to know what everyone considers
            > > to be
            > > the "final"
            > > > or "last" stages of HD. My siblings and I thought
            > > we were there
            > > when
            > > > mom went to the home but she has gotten SO much
            > > worse so fast. I am
            > > > thinking now that even though she requires
            > > complete help for
            > > > everything she does and can hardly feed
            > > herself(only finger foods)
            > > and
            > > > we can hardly understand what she is saying now. I
            > > am not sure that
            > > > this is the worst of HD. I now think that the last
            > > stages must be
            > > > just unspeakably bad. No communication at all!
            > > Just lying in the
            > > bed
            > > > all the time.Being trapped in the body that has
            > > failed her.
            > > > What a future.
            > > >
            > > > Kristen
            > > >
            > > >
            > > >
            > > >
            > > >
            > > > In huntingtonsatrisk@y..., susie_que_56
            > > <no_reply@y...> wrote:
            > > > > Re: Kristen
            > > > > You know there isn't much you can tell me about
            > > the mental side
            > > of
            > > > HD
            > > > > that I didn't see first handed. My what a scary
            > > thing it can be.
            > > > > Frank my husband had the mental side but it was
            > > also the mean
            > > > mental
            > > > > stuff. Rages every night before bedtime,
            > > sneaking the youngest
            > > out
            > > > so
            > > > > he would be safe.... Hd is not a pretty picture
            > > in deed. Frank
            > > > never
            > > > > wanted to be kept alive either. I had the Dr
            > > make out DNR papers
            > > so
            > > > > that once he was gone there was no bringing him
            > > back to suffer a
            > > > > crule fate as HD can hand out! I still remember
            > > thinking that he
            > > > > never wanted a feeding tube put in, so if he was
            > > starving how was
            > > I
            > > > > going to handle him wasting away. Was I capablle
            > > of dealing with
            > > > all
            > > > > that went with the end stages of HD for him? I
            > > really had no
            > > choice
            > > > > in thew matter. Just like you in many ways. We
            > > see our loved one
            > > > > suffer through this disease and wonder why
            > > anyone who was good
            > > and
            > > > > nice has to suffer so. It is really hard to put
            > > down just what we
            > > > > feel like watching what they go through. But
            > > know any time you
            > > have
            > > > > an outlet here.
            > > > > You just take care fo yourself Kristen that is
            > > improtant too!
            > > > >
            > > > > Susie
            > >
            > >
            > > ------------------------ Yahoo! Groups Sponsor
            > >
            > > To unsubscribe from this group, send an email to:
            > > huntingtonsatrisk-unsubscribe@y...
            > >
            > >
            > >
            > > Your use of Yahoo! Groups is subject to
            > > http://docs.yahoo.com/info/terms/
            > >
            > >
            >
            > __________________________________________________
            > Do You Yahoo!?
            > Everything you'll ever need on one web page
            > from News and Sport to Email and Music Charts
            > http://uk.my.yahoo.com
          • Jo Ventham
            Hi, My mums is also in her stomach, I dont know if this is the same for Tommy s mum, but my mum is thin, I think she gets tired because she does not have much
            Message 5 of 10 , Sep 20, 2002
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              Hi,
              My mums is also in her stomach, I dont know if this is
              the same for Tommy's mum, but my mum is thin, I think
              she gets tired because she does not have much energy.
              I do not think that the feeding tube allows for weight
              gain.

              I have been told that Huntingtons only destroys the
              body not the mind, suffers can hear and understand
              eveything you say. They do not have a very good short
              term memory, but their long term memory is excellent.
              So they know who you are and are happy to see you.

              When I talk of chest infections, this is fluid getting
              on the lungs,due to the inability to swallow and it
              going down the wrong hole. (the reason for putting a
              feeding tube in) my mum has had physo to reduce the
              this.
              Can Tommys mum take anything by mouth anymore??

              --- brwnid_woman <brwnid_woman@...> wrote: >
              Jo,
              > Tommys mom has only had to have her feeding tube
              > replaced once. I'm
              > not aware of infections. Her sister sees her daily
              > so, I'm sure she
              > would have mentioned it to me if had been a problem.
              > Hers is in her
              > stomach. Where is your moms? I think his mom sleeps
              > alot. ( I often
              > wonder why? are they tired?) But, she always has a
              > smile in hr eyes
              > when we visit and I really beleive she comprehends
              > what we all are
              > saying.
              >
              >
              >
              > --- In huntingtonsatrisk@y..., Jo Ventham
              > <jlohotty@y...> wrote:
              > > Talking about the final stages, what you have just
              > > said rings so many bells to me.
              > >
              > > My mum has also had a feeding tube put in in the
              > last
              > > two years. She too could only acknowledge me with
              > eye
              > > contact, she used to look at me with big wide
              > eyes. I
              > > then knew she knew I was there, this gave me some
              > > comfort. However my mum no longer has the ability
              > to
              > > do this and she no longer gives me eye contact.
              > She
              > > now sleeps the majority of the time, but at least
              > she
              > > is peaceful. My mum has been into hospital a
              > couple of
              > > times since the tube first went in. She has just
              > come
              > > out after a second operation to replace a tube.
              > >
              > > I wonder how much worse, this disease can possibly
              > > get. Will there be frequent chest infections?? I
              > do
              > > not know, but if anyone has this answer, it would
              > be
              > > helpful to know.
              > >
              > > I am only 21 and my mother has been in a home for
              > > around 14 years. They say, that no two people with
              > HD
              > > are the same, so it is difficult to know what will
              > > happen, but at least we can draw of others
              > experiences
              > > and feel confort in the knowledge that we are not
              > > alone.
              > >
              > > Jo
              > >
              > > --- brwnid_woman <brwnid_woman@y...> wrote: >
              > > > Good question!!!! What are the "final" stages
              > of
              > > > this horrid
              > > > disease? Tommys mom hasn't talked or walked in
              > 7
              > > > years now. The last
              > > > two she has had a feeding tube. You talk to her
              > and
              > > > she can't talk
              > > > back except with her eyes. Oh, how it breaks my
              > > > heart!! She does seem
              > > > to recognize all of us though. Especially mine
              > and
              > > > Tommys son
              > > > Jonathon. It's like her face just lights up when
              > he
              > > > is there with
              > > > her.Other than having HD she seems real healthy
              > > > though and I just
              > > > wonder what are the final stages and how long
              > will
              > > > she linger? She's
              > > > been institutionalized for 14 years now and in a
              > > > care center. Anyone
              > > > have the answer??????
              > > > --- In huntingtonsatrisk@y..., blondebarber37814
              > > > <no_reply@y...>
              > > > wrote:
              > > > > Susie, I am sure you've seen more than you
              > care to
              > > > remember. It is
              > > > > hard. I am curious to know what everyone
              > considers
              > > > to be
              > > > the "final"
              > > > > or "last" stages of HD. My siblings and I
              > thought
              > > > we were there
              > > > when
              > > > > mom went to the home but she has gotten SO
              > much
              > > > worse so fast. I am
              > > > > thinking now that even though she requires
              > > > complete help for
              > > > > everything she does and can hardly feed
              > > > herself(only finger foods)
              > > > and
              > > > > we can hardly understand what she is saying
              > now. I
              > > > am not sure that
              > > > > this is the worst of HD. I now think that the
              > last
              > > > stages must be
              > > > > just unspeakably bad. No communication at all!
              > > > Just lying in the
              > > > bed
              > > > > all the time.Being trapped in the body that
              > has
              > > > failed her.
              > > > > What a future.
              > > > >
              > > > > Kristen
              > > > >
              > > > >
              > > > >
              > > > >
              > > > >
              > > > > In huntingtonsatrisk@y..., susie_que_56
              > > > <no_reply@y...> wrote:
              > > > > > Re: Kristen
              > > > > > You know there isn't much you can tell me
              > about
              > > > the mental side
              > > > of
              > > > > HD
              > > > > > that I didn't see first handed. My what a
              > scary
              > > > thing it can be.
              > > > > > Frank my husband had the mental side but it
              > was
              > > > also the mean
              > > > > mental
              > > > > > stuff. Rages every night before bedtime,
              > > > sneaking the youngest
              > > > out
              > > > > so
              > > > > > he would be safe.... Hd is not a pretty
              > picture
              > > > in deed. Frank
              > > > > never
              > > > > > wanted to be kept alive either. I had the Dr
              > > > make out DNR papers
              > > > so
              > > > > > that once he was gone there was no bringing
              > him
              > > > back to suffer a
              > > > > > crule fate as HD can hand out! I still
              > remember
              > > > thinking that he
              > > > > > never wanted a feeding tube put in, so if he
              > was
              > > > starving how was
              > > > I
              > > > > > going to handle him wasting away. Was I
              > capablle
              > > > of dealing with
              > > > > all
              > > > > > that went with the end stages of HD for him?
              > I
              > > > really had no
              > > > choice
              > > > > > in thew matter. Just like you in many ways.
              > We
              > > > see our loved one
              > > > > > suffer through this disease and wonder why
              > > > anyone who was good
              > > > and
              > > > > > nice has to suffer so. It is really hard to
              > put
              > > > down just what we
              > > > > > feel like watching what they go through. But
              > > > know any time you
              > > > have
              > > > > > an outlet here.
              > > > > > You just take care fo yourself Kristen that
              > is
              > > > improtant too!
              > > > > >
              > > > > > Susie
              > > >
              > > >
              > > > ------------------------ Yahoo! Groups Sponsor
              > > >
              > > > To unsubscribe from this group, send an email
              > to:
              > > > huntingtonsatrisk-unsubscribe@y...
              > > >
              > > >
              > > >
              > > > Your use of Yahoo! Groups is subject to
              > > > http://docs.yahoo.com/info/terms/
              >
              === message truncated ===

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            • Anissa Thompson
              ... === message truncated === My name is Anissa and my mom of HD 3 years ago on the 29 of September. The last stage for mom was short but sad. I am about to
              Message 6 of 10 , Sep 20, 2002
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                --- Jo Ventham <jlohotty@...> wrote:
                > Hi,
                > My mums is also in her stomach, I dont know if this
                > is
                > the same for Tommy's mum, but my mum is thin, I
                > think
                > she gets tired because she does not have much
                > energy.
                > I do not think that the feeding tube allows for
                > weight
                > gain.
                >
                > I have been told that Huntingtons only destroys the
                > body not the mind, suffers can hear and understand
                > eveything you say. They do not have a very good
                > short
                > term memory, but their long term memory is
                > excellent.
                > So they know who you are and are happy to see you.
                >
                > When I talk of chest infections, this is fluid
                > getting
                > on the lungs,due to the inability to swallow and it
                > going down the wrong hole. (the reason for putting a
                > feeding tube in) my mum has had physo to reduce the
                > this.
                > Can Tommys mum take anything by mouth anymore??
                >
                > --- brwnid_woman <brwnid_woman@...> wrote: >
                > Jo,
                > > Tommys mom has only had to have her feeding tube
                > > replaced once. I'm
                > > not aware of infections. Her sister sees her
                > daily
                > > so, I'm sure she
                > > would have mentioned it to me if had been a
                > problem.
                > > Hers is in her
                > > stomach. Where is your moms? I think his mom
                > sleeps
                > > alot. ( I often
                > > wonder why? are they tired?) But, she always has a
                > > smile in hr eyes
                > > when we visit and I really beleive she comprehends
                > > what we all are
                > > saying.
                > >
                > >
                > >
                > > --- In huntingtonsatrisk@y..., Jo Ventham
                > > <jlohotty@y...> wrote:
                > > > Talking about the final stages, what you have
                > just
                > > > said rings so many bells to me.
                > > >
                > > > My mum has also had a feeding tube put in in the
                > > last
                > > > two years. She too could only acknowledge me
                > with
                > > eye
                > > > contact, she used to look at me with big wide
                > > eyes. I
                > > > then knew she knew I was there, this gave me
                > some
                > > > comfort. However my mum no longer has the
                > ability
                > > to
                > > > do this and she no longer gives me eye contact.
                > > She
                > > > now sleeps the majority of the time, but at
                > least
                > > she
                > > > is peaceful. My mum has been into hospital a
                > > couple of
                > > > times since the tube first went in. She has just
                > > come
                > > > out after a second operation to replace a tube.
                > > >
                > > > I wonder how much worse, this disease can
                > possibly
                > > > get. Will there be frequent chest infections?? I
                > > do
                > > > not know, but if anyone has this answer, it
                > would
                > > be
                > > > helpful to know.
                > > >
                > > > I am only 21 and my mother has been in a home
                > for
                > > > around 14 years. They say, that no two people
                > with
                > > HD
                > > > are the same, so it is difficult to know what
                > will
                > > > happen, but at least we can draw of others
                > > experiences
                > > > and feel confort in the knowledge that we are
                > not
                > > > alone.
                > > >
                > > > Jo
                > > >
                > > > --- brwnid_woman <brwnid_woman@y...> wrote: >
                > > > > Good question!!!! What are the "final" stages
                > > of
                > > > > this horrid
                > > > > disease? Tommys mom hasn't talked or walked
                > in
                > > 7
                > > > > years now. The last
                > > > > two she has had a feeding tube. You talk to
                > her
                > > and
                > > > > she can't talk
                > > > > back except with her eyes. Oh, how it breaks
                > my
                > > > > heart!! She does seem
                > > > > to recognize all of us though. Especially mine
                > > and
                > > > > Tommys son
                > > > > Jonathon. It's like her face just lights up
                > when
                > > he
                > > > > is there with
                > > > > her.Other than having HD she seems real
                > healthy
                > > > > though and I just
                > > > > wonder what are the final stages and how long
                > > will
                > > > > she linger? She's
                > > > > been institutionalized for 14 years now and in
                > a
                > > > > care center. Anyone
                > > > > have the answer??????
                > > > > --- In huntingtonsatrisk@y...,
                > blondebarber37814
                > > > > <no_reply@y...>
                > > > > wrote:
                > > > > > Susie, I am sure you've seen more than you
                > > care to
                > > > > remember. It is
                > > > > > hard. I am curious to know what everyone
                > > considers
                > > > > to be
                > > > > the "final"
                > > > > > or "last" stages of HD. My siblings and I
                > > thought
                > > > > we were there
                > > > > when
                > > > > > mom went to the home but she has gotten SO
                > > much
                > > > > worse so fast. I am
                > > > > > thinking now that even though she requires
                > > > > complete help for
                > > > > > everything she does and can hardly feed
                > > > > herself(only finger foods)
                > > > > and
                > > > > > we can hardly understand what she is saying
                > > now. I
                > > > > am not sure that
                > > > > > this is the worst of HD. I now think that
                > the
                > > last
                > > > > stages must be
                > > > > > just unspeakably bad. No communication at
                > all!
                > > > > Just lying in the
                > > > > bed
                > > > > > all the time.Being trapped in the body that
                > > has
                > > > > failed her.
                > > > > > What a future.
                > > > > >
                > > > > > Kristen
                > > > > >
                > > > > >
                > > > > >
                > > > > >
                > > > > >
                > > > > > In huntingtonsatrisk@y..., susie_que_56
                > > > > <no_reply@y...> wrote:
                > > > > > > Re: Kristen
                > > > > > > You know there isn't much you can tell me
                > > about
                > > > > the mental side
                > > > > of
                > > > > > HD
                > > > > > > that I didn't see first handed. My what a
                > > scary
                > > > > thing it can be.
                > > > > > > Frank my husband had the mental side but
                > it
                > > was
                > > > > also the mean
                > > > > > mental
                > > > > > > stuff. Rages every night before bedtime,
                > > > > sneaking the youngest
                > > > > out
                > > > > > so
                > > > > > > he would be safe.... Hd is not a pretty
                > > picture
                > > > > in deed. Frank
                >
                === message truncated ===
                My name is Anissa and my mom of HD 3 years ago on the
                29 of September. The last stage for mom was short but
                sad. I am about to leave work and I will continue this
                letter on Monday. I hope to chat with you all soon.
                PEACE!!!!!
                Anissa

                __________________________________________________
                Do you Yahoo!?
                New DSL Internet Access from SBC & Yahoo!
                http://sbc.yahoo.com
              • brwnid_woman
                Hi Jo, Yes, Tommys moms tube is in her stomach as well. She did have fluid build up on her lungs before the tubing. She can t have anything by mouth now and
                Message 7 of 10 , Sep 23, 2002
                • 0 Attachment
                  Hi Jo,

                  Yes, Tommys moms tube is in her stomach as well. She did have fluid
                  build up on her lungs before the tubing. She can't have anything by
                  mouth now and hasn't in about 2 years. She is fairly thin but, she
                  has gained some weight since moving her to this new care center.(2
                  years ago) Yes, I think you're right about it destroying the body and
                  not the mind. That's what makes this disease so horrible. As to their
                  memory span, you're right about that as well. I've watched Tommy over
                  the last year and the changes are just devastating to me. He's only
                  36. I went and saw him yesterday and he didn't recognize me at first.
                  It broke my heart. It's like he tries to think so hard about things.
                  My heart goes out to those w/ this disease and to those at risk as,
                  our son is now at risk!!!
                  --- In huntingtonsatrisk@y..., Jo Ventham <jlohotty@y...> wrote:
                  > Hi,
                  > My mums is also in her stomach, I dont know if this is
                  > the same for Tommy's mum, but my mum is thin, I think
                  > she gets tired because she does not have much energy.
                  > I do not think that the feeding tube allows for weight
                  > gain.
                  >
                  > I have been told that Huntingtons only destroys the
                  > body not the mind, suffers can hear and understand
                  > eveything you say. They do not have a very good short
                  > term memory, but their long term memory is excellent.
                  > So they know who you are and are happy to see you.
                  >
                  > When I talk of chest infections, this is fluid getting
                  > on the lungs,due to the inability to swallow and it
                  > going down the wrong hole. (the reason for putting a
                  > feeding tube in) my mum has had physo to reduce the
                  > this.
                  > Can Tommys mum take anything by mouth anymore??
                  >
                  > --- brwnid_woman <brwnid_woman@y...> wrote: >
                  > Jo,
                  > > Tommys mom has only had to have her feeding tube
                  > > replaced once. I'm
                  > > not aware of infections. Her sister sees her daily
                  > > so, I'm sure she
                  > > would have mentioned it to me if had been a problem.
                  > > Hers is in her
                  > > stomach. Where is your moms? I think his mom sleeps
                  > > alot. ( I often
                  > > wonder why? are they tired?) But, she always has a
                  > > smile in hr eyes
                  > > when we visit and I really beleive she comprehends
                  > > what we all are
                  > > saying.
                  > >
                  > >
                  > >
                  > > --- In huntingtonsatrisk@y..., Jo Ventham
                  > > <jlohotty@y...> wrote:
                  > > > Talking about the final stages, what you have just
                  > > > said rings so many bells to me.
                  > > >
                  > > > My mum has also had a feeding tube put in in the
                  > > last
                  > > > two years. She too could only acknowledge me with
                  > > eye
                  > > > contact, she used to look at me with big wide
                  > > eyes. I
                  > > > then knew she knew I was there, this gave me some
                  > > > comfort. However my mum no longer has the ability
                  > > to
                  > > > do this and she no longer gives me eye contact.
                  > > She
                  > > > now sleeps the majority of the time, but at least
                  > > she
                  > > > is peaceful. My mum has been into hospital a
                  > > couple of
                  > > > times since the tube first went in. She has just
                  > > come
                  > > > out after a second operation to replace a tube.
                  > > >
                  > > > I wonder how much worse, this disease can possibly
                  > > > get. Will there be frequent chest infections?? I
                  > > do
                  > > > not know, but if anyone has this answer, it would
                  > > be
                  > > > helpful to know.
                  > > >
                  > > > I am only 21 and my mother has been in a home for
                  > > > around 14 years. They say, that no two people with
                  > > HD
                  > > > are the same, so it is difficult to know what will
                  > > > happen, but at least we can draw of others
                  > > experiences
                  > > > and feel confort in the knowledge that we are not
                  > > > alone.
                  > > >
                  > > > Jo
                  > > >
                  > > > --- brwnid_woman <brwnid_woman@y...> wrote: >
                  > > > > Good question!!!! What are the "final" stages
                  > > of
                  > > > > this horrid
                  > > > > disease? Tommys mom hasn't talked or walked in
                  > > 7
                  > > > > years now. The last
                  > > > > two she has had a feeding tube. You talk to her
                  > > and
                  > > > > she can't talk
                  > > > > back except with her eyes. Oh, how it breaks my
                  > > > > heart!! She does seem
                  > > > > to recognize all of us though. Especially mine
                  > > and
                  > > > > Tommys son
                  > > > > Jonathon. It's like her face just lights up when
                  > > he
                  > > > > is there with
                  > > > > her.Other than having HD she seems real healthy
                  > > > > though and I just
                  > > > > wonder what are the final stages and how long
                  > > will
                  > > > > she linger? She's
                  > > > > been institutionalized for 14 years now and in a
                  > > > > care center. Anyone
                  > > > > have the answer??????
                  > > > > --- In huntingtonsatrisk@y..., blondebarber37814
                  > > > > <no_reply@y...>
                  > > > > wrote:
                  > > > > > Susie, I am sure you've seen more than you
                  > > care to
                  > > > > remember. It is
                  > > > > > hard. I am curious to know what everyone
                  > > considers
                  > > > > to be
                  > > > > the "final"
                  > > > > > or "last" stages of HD. My siblings and I
                  > > thought
                  > > > > we were there
                  > > > > when
                  > > > > > mom went to the home but she has gotten SO
                  > > much
                  > > > > worse so fast. I am
                  > > > > > thinking now that even though she requires
                  > > > > complete help for
                  > > > > > everything she does and can hardly feed
                  > > > > herself(only finger foods)
                  > > > > and
                  > > > > > we can hardly understand what she is saying
                  > > now. I
                  > > > > am not sure that
                  > > > > > this is the worst of HD. I now think that the
                  > > last
                  > > > > stages must be
                  > > > > > just unspeakably bad. No communication at all!
                  > > > > Just lying in the
                  > > > > bed
                  > > > > > all the time.Being trapped in the body that
                  > > has
                  > > > > failed her.
                  > > > > > What a future.
                  > > > > >
                  > > > > > Kristen
                  > > > > >
                  > > > > >
                  > > > > >
                  > > > > >
                  > > > > >
                  > > > > > In huntingtonsatrisk@y..., susie_que_56
                  > > > > <no_reply@y...> wrote:
                  > > > > > > Re: Kristen
                  > > > > > > You know there isn't much you can tell me
                  > > about
                  > > > > the mental side
                  > > > > of
                  > > > > > HD
                  > > > > > > that I didn't see first handed. My what a
                  > > scary
                  > > > > thing it can be.
                  > > > > > > Frank my husband had the mental side but it
                  > > was
                  > > > > also the mean
                  > > > > > mental
                  > > > > > > stuff. Rages every night before bedtime,
                  > > > > sneaking the youngest
                  > > > > out
                  > > > > > so
                  > > > > > > he would be safe.... Hd is not a pretty
                  > > picture
                  > > > > in deed. Frank
                  > > > > > never
                  > > > > > > wanted to be kept alive either. I had the Dr
                  > > > > make out DNR papers
                  > > > > so
                  > > > > > > that once he was gone there was no bringing
                  > > him
                  > > > > back to suffer a
                  > > > > > > crule fate as HD can hand out! I still
                  > > remember
                  > > > > thinking that he
                  > > > > > > never wanted a feeding tube put in, so if he
                  > > was
                  > > > > starving how was
                  > > > > I
                  > > > > > > going to handle him wasting away. Was I
                  > > capablle
                  > > > > of dealing with
                  > > > > > all
                  > > > > > > that went with the end stages of HD for him?
                  > > I
                  > > > > really had no
                  > > > > choice
                  > > > > > > in thew matter. Just like you in many ways.
                  > > We
                  > > > > see our loved one
                  > > > > > > suffer through this disease and wonder why
                  > > > > anyone who was good
                  > > > > and
                  > > > > > > nice has to suffer so. It is really hard to
                  > > put
                  > > > > down just what we
                  > > > > > > feel like watching what they go through. But
                  > > > > know any time you
                  > > > > have
                  > > > > > > an outlet here.
                  > > > > > > You just take care fo yourself Kristen that
                  > > is
                  > > > > improtant too!
                  > > > > > >
                  > > > > > > Susie
                  > > > >
                  > > > >
                  > > > > ------------------------ Yahoo! Groups Sponsor
                  > > > >
                  > > > > To unsubscribe from this group, send an email
                  > > to:
                  > > > > huntingtonsatrisk-unsubscribe@y...
                  > > > >
                  > > > >
                  > > > >
                  > > > > Your use of Yahoo! Groups is subject to
                  > > > > http://docs.yahoo.com/info/terms/
                  > >
                  > === message truncated ===
                  >
                  > __________________________________________________
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                • tonisurman
                  Hi, my name is Toni and I just joined the group several weeks ago..my daughter in law is at risk, and I worry all the time..her 2 siblings now have HD..one is
                  Message 8 of 10 , Sep 23, 2002
                  • 0 Attachment
                    Hi, my name is Toni and I just joined the group several weeks ago..my
                    daughter in law is at risk, and I worry all the time..her 2 siblings
                    now have HD..one is in advanced stages..drooling, off balance, can't
                    function alone etc, and the other sister who has 2 children is at the
                    beginning stages..it is heartbreaking to say the least to see these
                    women suffer and to live with the worry of my son's wife being next
                    is a terrible burden..her father and grandmother died of HD by the
                    age of 46..we all need each other in this group to share our
                    knowledge and our ups and downs..sincerly, Toni
                    > Hi Jo,
                    >
                    > Yes, Tommys moms tube is in her stomach as well. She did have fluid
                    > build up on her lungs before the tubing. She can't have anything by
                    > mouth now and hasn't in about 2 years. She is fairly thin but, she
                    > has gained some weight since moving her to this new care center.(2
                    > years ago) Yes, I think you're right about it destroying the body
                    and
                    > not the mind. That's what makes this disease so horrible. As to
                    their
                    > memory span, you're right about that as well. I've watched Tommy
                    over
                    > the last year and the changes are just devastating to me. He's only
                    > 36. I went and saw him yesterday and he didn't recognize me at
                    first.
                    > It broke my heart. It's like he tries to think so hard about
                    things.
                    > My heart goes out to those w/ this disease and to those at risk as,
                    > our son is now at risk!!!
                    > --- In huntingtonsatrisk@y..., Jo Ventham <jlohotty@y...> wrote:
                    > > Hi,
                    > > My mums is also in her stomach, I dont know if this is
                    > > the same for Tommy's mum, but my mum is thin, I think
                    > > she gets tired because she does not have much energy.
                    > > I do not think that the feeding tube allows for weight
                    > > gain.
                    > >
                    > > I have been told that Huntingtons only destroys the
                    > > body not the mind, suffers can hear and understand
                    > > eveything you say. They do not have a very good short
                    > > term memory, but their long term memory is excellent.
                    > > So they know who you are and are happy to see you.
                    > >
                    > > When I talk of chest infections, this is fluid getting
                    > > on the lungs,due to the inability to swallow and it
                    > > going down the wrong hole. (the reason for putting a
                    > > feeding tube in) my mum has had physo to reduce the
                    > > this.
                    > > Can Tommys mum take anything by mouth anymore??
                    > >
                    > > --- brwnid_woman <brwnid_woman@y...> wrote: >
                    > > Jo,
                    > > > Tommys mom has only had to have her feeding tube
                    > > > replaced once. I'm
                    > > > not aware of infections. Her sister sees her daily
                    > > > so, I'm sure she
                    > > > would have mentioned it to me if had been a problem.
                    > > > Hers is in her
                    > > > stomach. Where is your moms? I think his mom sleeps
                    > > > alot. ( I often
                    > > > wonder why? are they tired?) But, she always has a
                    > > > smile in hr eyes
                    > > > when we visit and I really beleive she comprehends
                    > > > what we all are
                    > > > saying.
                    > > >
                    > > >
                    > > >
                    > > > --- In huntingtonsatrisk@y..., Jo Ventham
                    > > > <jlohotty@y...> wrote:
                    > > > > Talking about the final stages, what you have just
                    > > > > said rings so many bells to me.
                    > > > >
                    > > > > My mum has also had a feeding tube put in in the
                    > > > last
                    > > > > two years. She too could only acknowledge me with
                    > > > eye
                    > > > > contact, she used to look at me with big wide
                    > > > eyes. I
                    > > > > then knew she knew I was there, this gave me some
                    > > > > comfort. However my mum no longer has the ability
                    > > > to
                    > > > > do this and she no longer gives me eye contact.
                    > > > She
                    > > > > now sleeps the majority of the time, but at least
                    > > > she
                    > > > > is peaceful. My mum has been into hospital a
                    > > > couple of
                    > > > > times since the tube first went in. She has just
                    > > > come
                    > > > > out after a second operation to replace a tube.
                    > > > >
                    > > > > I wonder how much worse, this disease can possibly
                    > > > > get. Will there be frequent chest infections?? I
                    > > > do
                    > > > > not know, but if anyone has this answer, it would
                    > > > be
                    > > > > helpful to know.
                    > > > >
                    > > > > I am only 21 and my mother has been in a home for
                    > > > > around 14 years. They say, that no two people with
                    > > > HD
                    > > > > are the same, so it is difficult to know what will
                    > > > > happen, but at least we can draw of others
                    > > > experiences
                    > > > > and feel confort in the knowledge that we are not
                    > > > > alone.
                    > > > >
                    > > > > Jo
                    > > > >
                    > > > > --- brwnid_woman <brwnid_woman@y...> wrote: >
                    > > > > > Good question!!!! What are the "final" stages
                    > > > of
                    > > > > > this horrid
                    > > > > > disease? Tommys mom hasn't talked or walked in
                    > > > 7
                    > > > > > years now. The last
                    > > > > > two she has had a feeding tube. You talk to her
                    > > > and
                    > > > > > she can't talk
                    > > > > > back except with her eyes. Oh, how it breaks my
                    > > > > > heart!! She does seem
                    > > > > > to recognize all of us though. Especially mine
                    > > > and
                    > > > > > Tommys son
                    > > > > > Jonathon. It's like her face just lights up when
                    > > > he
                    > > > > > is there with
                    > > > > > her.Other than having HD she seems real healthy
                    > > > > > though and I just
                    > > > > > wonder what are the final stages and how long
                    > > > will
                    > > > > > she linger? She's
                    > > > > > been institutionalized for 14 years now and in a
                    > > > > > care center. Anyone
                    > > > > > have the answer??????
                    > > > > > --- In huntingtonsatrisk@y..., blondebarber37814
                    > > > > > <no_reply@y...>
                    > > > > > wrote:
                    > > > > > > Susie, I am sure you've seen more than you
                    > > > care to
                    > > > > > remember. It is
                    > > > > > > hard. I am curious to know what everyone
                    > > > considers
                    > > > > > to be
                    > > > > > the "final"
                    > > > > > > or "last" stages of HD. My siblings and I
                    > > > thought
                    > > > > > we were there
                    > > > > > when
                    > > > > > > mom went to the home but she has gotten SO
                    > > > much
                    > > > > > worse so fast. I am
                    > > > > > > thinking now that even though she requires
                    > > > > > complete help for
                    > > > > > > everything she does and can hardly feed
                    > > > > > herself(only finger foods)
                    > > > > > and
                    > > > > > > we can hardly understand what she is saying
                    > > > now. I
                    > > > > > am not sure that
                    > > > > > > this is the worst of HD. I now think that the
                    > > > last
                    > > > > > stages must be
                    > > > > > > just unspeakably bad. No communication at all!
                    > > > > > Just lying in the
                    > > > > > bed
                    > > > > > > all the time.Being trapped in the body that
                    > > > has
                    > > > > > failed her.
                    > > > > > > What a future.
                    > > > > > >
                    > > > > > > Kristen
                    > > > > > >
                    > > > > > >
                    > > > > > >
                    > > > > > >
                    > > > > > >
                    > > > > > > In huntingtonsatrisk@y..., susie_que_56
                    > > > > > <no_reply@y...> wrote:
                    > > > > > > > Re: Kristen
                    > > > > > > > You know there isn't much you can tell me
                    > > > about
                    > > > > > the mental side
                    > > > > > of
                    > > > > > > HD
                    > > > > > > > that I didn't see first handed. My what a
                    > > > scary
                    > > > > > thing it can be.
                    > > > > > > > Frank my husband had the mental side but it
                    > > > was
                    > > > > > also the mean
                    > > > > > > mental
                    > > > > > > > stuff. Rages every night before bedtime,
                    > > > > > sneaking the youngest
                    > > > > > out
                    > > > > > > so
                    > > > > > > > he would be safe.... Hd is not a pretty
                    > > > picture
                    > > > > > in deed. Frank
                    > > > > > > never
                    > > > > > > > wanted to be kept alive either. I had the Dr
                    > > > > > make out DNR papers
                    > > > > > so
                    > > > > > > > that once he was gone there was no bringing
                    > > > him
                    > > > > > back to suffer a
                    > > > > > > > crule fate as HD can hand out! I still
                    > > > remember
                    > > > > > thinking that he
                    > > > > > > > never wanted a feeding tube put in, so if he
                    > > > was
                    > > > > > starving how was
                    > > > > > I
                    > > > > > > > going to handle him wasting away. Was I
                    > > > capablle
                    > > > > > of dealing with
                    > > > > > > all
                    > > > > > > > that went with the end stages of HD for him?
                    > > > I
                    > > > > > really had no
                    > > > > > choice
                    > > > > > > > in thew matter. Just like you in many ways.
                    > > > We
                    > > > > > see our loved one
                    > > > > > > > suffer through this disease and wonder why
                    > > > > > anyone who was good
                    > > > > > and
                    > > > > > > > nice has to suffer so. It is really hard to
                    > > > put
                    > > > > > down just what we
                    > > > > > > > feel like watching what they go through. But
                    > > > > > know any time you
                    > > > > > have
                    > > > > > > > an outlet here.
                    > > > > > > > You just take care fo yourself Kristen that
                    > > > is
                    > > > > > improtant too!
                    > > > > > > >
                    > > > > > > > Susie
                    > > > > >
                    > > > > >
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                    > > > > >
                    > > > > > To unsubscribe from this group, send an email
                    > > > to:
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                    > > > > >
                    > > > > >
                    > > > > >
                    > > > > > Your use of Yahoo! Groups is subject to
                    > > > > > http://docs.yahoo.com/info/terms/
                    > > >
                    > > === message truncated ===
                    > >
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                  • Anissa Thompson
                    ... === message truncated === Hey Guys!!! It s really nice reading all of your stories. I am glad you all are here to share these stories with me. My name is
                    Message 9 of 10 , Sep 24, 2002
                    • 0 Attachment
                      --- Jo Ventham <jlohotty@...> wrote:
                      > Hi,
                      > My mums is also in her stomach, I dont know if this
                      > is
                      > the same for Tommy's mum, but my mum is thin, I
                      > think
                      > she gets tired because she does not have much
                      > energy.
                      > I do not think that the feeding tube allows for
                      > weight
                      > gain.
                      >
                      > I have been told that Huntingtons only destroys the
                      > body not the mind, suffers can hear and understand
                      > eveything you say. They do not have a very good
                      > short
                      > term memory, but their long term memory is
                      > excellent.
                      > So they know who you are and are happy to see you.
                      >
                      > When I talk of chest infections, this is fluid
                      > getting
                      > on the lungs,due to the inability to swallow and it
                      > going down the wrong hole. (the reason for putting a
                      > feeding tube in) my mum has had physo to reduce the
                      > this.
                      > Can Tommys mum take anything by mouth anymore??
                      >
                      > --- brwnid_woman <brwnid_woman@...> wrote: >
                      > Jo,
                      > > Tommys mom has only had to have her feeding tube
                      > > replaced once. I'm
                      > > not aware of infections. Her sister sees her
                      > daily
                      > > so, I'm sure she
                      > > would have mentioned it to me if had been a
                      > problem.
                      > > Hers is in her
                      > > stomach. Where is your moms? I think his mom
                      > sleeps
                      > > alot. ( I often
                      > > wonder why? are they tired?) But, she always has a
                      > > smile in hr eyes
                      > > when we visit and I really beleive she comprehends
                      > > what we all are
                      > > saying.
                      > >
                      > >
                      > >
                      > > --- In huntingtonsatrisk@y..., Jo Ventham
                      > > <jlohotty@y...> wrote:
                      > > > Talking about the final stages, what you have
                      > just
                      > > > said rings so many bells to me.
                      > > >
                      > > > My mum has also had a feeding tube put in in the
                      > > last
                      > > > two years. She too could only acknowledge me
                      > with
                      > > eye
                      > > > contact, she used to look at me with big wide
                      > > eyes. I
                      > > > then knew she knew I was there, this gave me
                      > some
                      > > > comfort. However my mum no longer has the
                      > ability
                      > > to
                      > > > do this and she no longer gives me eye contact.
                      > > She
                      > > > now sleeps the majority of the time, but at
                      > least
                      > > she
                      > > > is peaceful. My mum has been into hospital a
                      > > couple of
                      > > > times since the tube first went in. She has just
                      > > come
                      > > > out after a second operation to replace a tube.
                      > > >
                      > > > I wonder how much worse, this disease can
                      > possibly
                      > > > get. Will there be frequent chest infections?? I
                      > > do
                      > > > not know, but if anyone has this answer, it
                      > would
                      > > be
                      > > > helpful to know.
                      > > >
                      > > > I am only 21 and my mother has been in a home
                      > for
                      > > > around 14 years. They say, that no two people
                      > with
                      > > HD
                      > > > are the same, so it is difficult to know what
                      > will
                      > > > happen, but at least we can draw of others
                      > > experiences
                      > > > and feel confort in the knowledge that we are
                      > not
                      > > > alone.
                      > > >
                      > > > Jo
                      > > >
                      > > > --- brwnid_woman <brwnid_woman@y...> wrote: >
                      > > > > Good question!!!! What are the "final" stages
                      > > of
                      > > > > this horrid
                      > > > > disease? Tommys mom hasn't talked or walked
                      > in
                      > > 7
                      > > > > years now. The last
                      > > > > two she has had a feeding tube. You talk to
                      > her
                      > > and
                      > > > > she can't talk
                      > > > > back except with her eyes. Oh, how it breaks
                      > my
                      > > > > heart!! She does seem
                      > > > > to recognize all of us though. Especially mine
                      > > and
                      > > > > Tommys son
                      > > > > Jonathon. It's like her face just lights up
                      > when
                      > > he
                      > > > > is there with
                      > > > > her.Other than having HD she seems real
                      > healthy
                      > > > > though and I just
                      > > > > wonder what are the final stages and how long
                      > > will
                      > > > > she linger? She's
                      > > > > been institutionalized for 14 years now and in
                      > a
                      > > > > care center. Anyone
                      > > > > have the answer??????
                      > > > > --- In huntingtonsatrisk@y...,
                      > blondebarber37814
                      > > > > <no_reply@y...>
                      > > > > wrote:
                      > > > > > Susie, I am sure you've seen more than you
                      > > care to
                      > > > > remember. It is
                      > > > > > hard. I am curious to know what everyone
                      > > considers
                      > > > > to be
                      > > > > the "final"
                      > > > > > or "last" stages of HD. My siblings and I
                      > > thought
                      > > > > we were there
                      > > > > when
                      > > > > > mom went to the home but she has gotten SO
                      > > much
                      > > > > worse so fast. I am
                      > > > > > thinking now that even though she requires
                      > > > > complete help for
                      > > > > > everything she does and can hardly feed
                      > > > > herself(only finger foods)
                      > > > > and
                      > > > > > we can hardly understand what she is saying
                      > > now. I
                      > > > > am not sure that
                      > > > > > this is the worst of HD. I now think that
                      > the
                      > > last
                      > > > > stages must be
                      > > > > > just unspeakably bad. No communication at
                      > all!
                      > > > > Just lying in the
                      > > > > bed
                      > > > > > all the time.Being trapped in the body that
                      > > has
                      > > > > failed her.
                      > > > > > What a future.
                      > > > > >
                      > > > > > Kristen
                      > > > > >
                      > > > > >
                      > > > > >
                      > > > > >
                      > > > > >
                      > > > > > In huntingtonsatrisk@y..., susie_que_56
                      > > > > <no_reply@y...> wrote:
                      > > > > > > Re: Kristen
                      > > > > > > You know there isn't much you can tell me
                      > > about
                      > > > > the mental side
                      > > > > of
                      > > > > > HD
                      > > > > > > that I didn't see first handed. My what a
                      > > scary
                      > > > > thing it can be.
                      > > > > > > Frank my husband had the mental side but
                      > it
                      > > was
                      > > > > also the mean
                      > > > > > mental
                      > > > > > > stuff. Rages every night before bedtime,
                      > > > > sneaking the youngest
                      > > > > out
                      > > > > > so
                      > > > > > > he would be safe.... Hd is not a pretty
                      > > picture
                      > > > > in deed. Frank
                      >
                      === message truncated ===
                      Hey Guys!!! It's really nice reading all of your
                      stories. I am glad you all are here to share these
                      stories with me. My name is Anissa and my mom died of
                      HD 3 years ago as of September 29. My mom death was
                      short and quiet. she died at home, with her nurse and
                      most of my sisters and brothers. We didn't have to put
                      in a feeding tube. She layed in the bed for 3 days
                      with her eyes closed, we would talk to her and bath
                      her and sit with her and watch TV, as we would if she
                      wasn't sick. The morning she died, my sisters were
                      around her bed and she opened up her eyes and one of
                      my sisters told her" Mom, it's ok you can let go, you
                      have lived your life and we will all be ok"! One tear
                      rolled out of her eye and she took her last breath. I
                      wanted to be there with my mom but I lefted to go get
                      one of my brothers from work as I pulled up in the
                      driveway one of my brothers said, she's gone. I am sp
                      glad that I got to spend so many years with my mother
                      and my kids was able to be around her while she was
                      well and when she was sick. HD is an UGLY disease and
                      we need to band together so we can find a cure. My
                      family just found out my oldest sister has HD, too!!!!
                      This is going to be double hard for us to deal with
                      but I know that GOD will give us the strength. Please
                      pray for my family and you ALL are in my prayers.
                      Thanks for listening!!!!

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