Conference turris::womannotes-v2

There was a special on PBS a while back on a similar test for a similar
disease [Alzheimers?], and how a few people decided whether or not to take it.
Maybe someone can come up with the specific reference, and maybe your friend
can buy the video from a local PBS station. I remember it being both factual
and moving. The moving part is the part that may help your friend.
	Mez

    Minor nit - unless you're talking about something different, the
    disease is "Huntington's chorea" and is what killed Woody Guthrie.
    Last I heard, Arlo was still free of symptoms. 

    It's the uncertainty of the future that makes things so hard for
    her.  She would like to know that she doesn't have the disease,
    but doesn't want to know for sure that she does have it.  She finds
    it hard to get seriously involved in a relationship as she worries
    about the future, yet on the other hand, she desperately wants the
    support that a special person in her life could give her.
    
    I just listen to her, and _try not_ to advise her of anything, as
    I don't know whats best.
    
    Liz

RE: .1
    
    There is currently no test to determine whether someone will develop
    Altzheimer's disease.  My father is in a nursing home in the advanced
    stages of that disease.  Believe me, the day a test becomes available,
    I'll be at the head of the line waiting to take it!
    
    							Pat

    re: .4  How would you deal with it if you knew that you had the
    disease.  Wouldn't it be better to just not know(!) given that there
    is still no cure.  
    
    I'm just playing Devils Advocate, ... trying to understand every
    point of view.
    
    Liz
    

    re: .2
    
    Thank you Paul.  I stand corrected.  I had only heard my friend
    tell me about the disease, and that was my phonetic interpretation.
    
    Liz

    Liz,
    
    If this woman were my friend, what I would say to her is this:
    
    For all of us, the future in uncertain.  I don't know about you,
    but no one has come up to me, thus far, and guaranteed that I'm
    going to live to 82 and then die a peaceful death in my sleep.
    
    If I worry about what is or isn't going to come tomorrow, I miss
    today.  
    
    I say these things, also as an adoptee, who knows the genetics of
    my biological families.  A lot of the women on my mother's side of
    the family have died from massive strokes by the time they are 50,
    although my birth mother died at the age of 38.
    
    I would suggest that your friend get connected with some adoption
    support groups.   Many adoptees are dealing with these kinds of
    issues and it's just comforting some time to know that you're not
    alone.  You can send me mail if you would like further information
    on what's available regarding the adoption network.
    
    Regards,
    
    Laura
    

>>  re: .4  How would you deal with it if you knew that you had the
>>  disease.  Wouldn't it be better to just not know(!) given that there
>>  is still no cure.  
    
    It's a decision I wouldn't consider making for someone else, but
    for me I want to know.  I can understand how someone else might
    not, but I do.
    
    The main reason is that I'd be able to prepare for it in terms of *not*
    putting my husband through the ordeal of being a caregiver to an
    Altzheimer's patient.  I know what's involved in that, and wouldn't
    wish it on someone I love.  Nor would I wish on him the torment
    involved when trying to decide whether and at what stage of the disease
    the victim should be put in a nursing home.  I also know what that's
    like.  I would make arrangements myself to be put away, and working
    with Steve, to plan our finances so the money is available when the
    time comes. 
    
    In no way am I trying to imply that my perspective is right for someone
    else...
    
    							Pat

    re: .8
    
    Pat.  I agree with your perspective.  However, I don't think my friend
    has the courage to face up to the possibility of knowing for sure that
    she has the disease.  Yet, she appears to be living her life in
    the manner that you'd expect someone to live if they knew for sure
    this was going to happen.  
    
    It takes a fairly courageous person to face up to it.
    
    Liz

I also saw that PBS special on this disease. 
The special was about a woman whose mother died
from  Huntington's Chorea.
This woman was also a researcher on this disease. She
spent years in a small village in South America (I think)
where a very high percentage of the residents have this
condition (I didn't want to say "disease", because that might
imply that it's contagious, which it is not.) I seem to recall
the percentage being amazingly high (50%??), because these
people marry from within their village, (a very small gene pool)
and are decendents of the first recorded case of Huntington's.

Anyway--at the end of her research, her work is used to develop
the test for Huntington's. She has one sister, and remember,
her mother died from the disease, meaning that the odds are 50-50
that she has it, and 50-50 that her sister had it. But after all her
work--she couldn't decide whether or not to utilize this test she had
helped develop. She watched her mother die of this disease, and then
had watched all those villagers suffer with it and then die. At the end
of the show, either she or her sister (I think her, but it was a while ago
that I saw this) decided to be tested, and the test came out negative.
The other sister decided not to find out.

Personally, I think I'd be tested. The odds are 50% that I'd be relieved
of the terrible worrying. If the test came out positive, then I'd want
to know so I could plan ahead to deal with the situation.

Question: If you knew you had the disease, would you have children,
knowing that there's a 50% chance that they'd also have Huntington's?
What if you didn't know whether or not you had it, but one of your parents did,
and you don't want to be tested--would you have children?

RE:  .3

>   She finds it hard to get seriously involved in a relationship as she
>   worries about the future, yet on the other hand, she desperately wants
>   the support that a special person in her life could give her.

Based on what you've said here, I suspect that taking the test would be a win-
win situation for her.  If she tests negative she can throw herself into a
relationship without fear of having plans cut short.  And even if she tests
positive she will have time to develop her life around the idea, doing what
she wants to do while she is fit, and arranging her life so that she will be
the smallest possible burden on her loved ones.  It is quite possible to make
special friends even when your time is limited.  On the other hand, if she
refuses to take the test she won't be able to fully enjoy herself in life if
she is healthy.  And if it does turn out that she is positive she may find
herself decaying some years down the road with no one to turn to, and with
her life left in disorder.

Facing our own mortality is never easy, and can be quite terrifying.  But
ultimately, those who do it are *always* glad that they have.  I'd suggest
that she take the test, and have a friend there to hold her hand when the
results come in.  Also, Elizabeth K�bler-Ross's book on death and dying (can
anyone remember the title?) may well provide both comfort and help.

Best wishes to your friend, whatever she decides to do.

						--Q (Dick Wagman)

       There is a saying that sort of applies here...

       "a coward dies a thousand deaths, a brave man dies but one"

       I'm not implying that your friend is a coward but the gist of the
       message fits her. If she spends her life in fear never knowing
       but always suspecting she will have died a thousand times before
       the disease itself gets her, if it ever does. liesl

I know I'd take the test. If I thought it would help my friend, I'd talk to her
about why this would be the right thing for me.

But I can't be as positive as .11 and .12. What's right for me might not be
right for my friends, or your friend.

	Andrew.

    Thanks for all your responses.  There are no easy anwsers to many
    of life's problems, right?
    
    Liz

    Kubler-Ross' book is "On Death and Dying," and is an excellent
    resource for anyone facing death -- their own or a loved one's.
    (Yes, I know that means all of us.)
    

    The following response is from a member of our community who wishes
    to remain anonymous at this time.
    
    						=maggie
    
    ===================================================================
    
    I am 29 years old and am at risk for HD. My Aunt was diagnosed after
    having symptoms for more than fifteen years. That was 10 years ago. It
    took a long time to diagnose because my Grandmother died of a heart
    attack in her forties. She had 10 children who lived to adulthood.
    Three died before my aunt was diagnosed. As we look back one had
    obvious signs of HD. Of the seven children still alive, all have
    children, many have grandchildren and only two (of the seven) remain
    symptom free. These two have three children between them and chances
    are that they do not carry the gene. They are well into their sixties
    although neither will admit it. The aunt mentioned above had nine
    children. I do not know if any of these cousins are involved in the
    research projects available in Baltimore as all but the youngest two
    were much older than me. My mother is one of the five that are
    diagnosed at this time with the disease. I found out in October of '86,
    When I was recently separated from a bad relationship and my middle
    child was 6 months old. At the time I was very depressed, finding out
    about mom just made things worse for a while. I had/have very
    supportive friends. One even introduced me to my current SO. The new
    love in my life was informed the first week about my mom and given the
    facts and feelings as I knew them then. Since then we have both learned
    a lot. We flew back to Baltimore for a funeral (SO's Grandmother).
    While we were there we visited the Johns Hopkins University. They do
    testing but won't test me because I don't live in the Baltimore area. I
    have been attempting to get tested since I found out. My children
    should know before they become involved in relationships. I love
    children. My SO loves my children. We wanted more children. We agreed
    that we did not want to increase the number of HD patients. We have
    been hoping that they would allow testing outside of the research areas
    so I could find out whether or not to be permanently "fixed" to prevent
    conception. If I do have HD then my SO would be left with raising two
    children who are not related (these things were discussed with me
    playing Devil's Advocate. SO wanted a family and we came as a unit) and
    possibly taking care of a declining Adult. We both agreed the children
    needs come first..i.a most of my assets will be in my fathers name or
    my children name. So we plan and dialog for the worst and enjoy our
    lives as much as we can. 

    On occasion my SO and I have attended HD support group meetings in a
    large city 65 miles away. Many "At Risk" individuals are upset that we
    have had to wait so long to be tested (there still is no test center
    near us and the testing has not been approved outside certain test
    centers. 

    In reply to .10 

    Knowing I am at risk I do not want to have any more children. My SO was
    told many times my feelings about this matter. I do have hope that I
    will be allowed to take the test in the next few years and see if we
    might be able to have more children (if I'm negative). If I'm positive
    I will be "fixed"and continue to enjoy my children, SO and life in
    general as long as I can. We did become pregnant after finding out
    about HD. For a week we dialoged and discussed options. Both of us
    being raised Catholic and also against abortion as a personal choice we
    still felt we had to consider it because of the possibility I would not
    see the child raised to adulthood if it turns out I do have HD. I
    played devils advocate and brought up as many what-ifs as possible. In
    the end I chose to allow my SO to have the final choice as all the
    responsibility would lay in my SO's lap if I do indeed have HD. Our
    baby boy is now three months old. 

    The choices I made were mine to make. Right or Wrong they are done. We
    are being very, very careful now and I am seriously considering getting
    "fixed" without taking the test. 

    There is prenatal testing and before they reveal the results you have
    to be considering aborting the fetus if it has the same risk as the
    "at-risk" parent.  This way they can get away with not telling the "at-
    risk" individual if he has the gene. They do this by examining the DNA
    of the fetus, the mother, the father and the "at-risk" individuals
    parents (one of these is the carrier). 

    For example: The mother is "at-risk" The mothers Father is the carrier
    of the gene.  The test compares the fetus DNA to the NOT
    "at-risk" parent. If it matches in a certain area then the child does
    not carry the gene. Then: The test compares the gene markers of the
    fetus to that of the unafflicted parent (the mother of the mother in
    this case) if they match the fetus is not a carrier of the gene. At
    this point they stop the comparison and say the fetus has the same risk
    as the "at-risk" 

    We were in Baltimore and pregnant but we had already "bonded" with our
    baby to be so would not consider the option of abortion although they
    would agreed to test the fetus even though we were close to five months
    along. They do manage to get fetal DNA from the fetus side of the
    placenta through a different method other than by inserting a needle
    into the amniotic sac. We also felt it would be unfair to my other
    children to know that one is or is not free of the gene and not know
    the others. 

    I realize I have a lot of things to say about this Affliction. I need
    to stop somewhere or I will be at the terminal all night long. I wanted
    to give the originator of this note a feel for what I am feeling.
    Knowing that not every one in the same shoes will feel this way. Close
    friends and family are important. With so many of my mothers family
    carrying the gene or trait I sometimes don't feel like I have much
    hope. I will always wonder if I have made the right choices. And not
    making any decisions is a decision in itself. 

    One aspect your friend does not have to deal with is watching your dear
    parent gradually become another person. Some research has shown that
    the HD patient is very cognizant of what is going on around him. He
    just can't communicate as quickly. I see my mom every day when I pick
    up the kids. My family day care provider fell in love will my mom long
    before she developed the symptoms and when she stopped working, my
    provider wanted mom to come over. This worked out great. My kids get to
    see mom every day and mom gets TLC while dad is at work. My provider
    swears she would not be able to take care of both babies (1-3 months
    and 1-7 months) if mom were not there. Mom does favor her
    grandchildren. I realize I have, at least for now, accepted that life
    is not fair so I'm going to make the best of it while I can. 

    I only hope this helps you relate to your friend. In the end no one
    can make the choices for her but your being there while she struggles
    with the options will be a help to her. 

						"also at-risk"

In a recent newsletter that I recieved fron the Huntington Society of Canada
they tell about a special TV show on Huntington's disease called 
"Confronting the Killer Gene". It has been produced in boston
for NOVA, a PBS series. The show is scheduled to air initially in the 
U.S. on March 27, and will be shown on Canadian PBS stations which air the
NOVA series. 
janet