| Informative Reporting! |
My family has Huntington’s disease.
Huntington’s disease (HD) is hereditary.
We don’t have a choice as to whether we
will become symptomatic if we have the
gene. If something else doesn’t kill us, HD
will and it starts early and ends late in life.
My Grand-mother was young when she
began to die of Huntington’s disease. In the
end she was sleep-ing on newspapers and
eating out of tin cans and the thought that
helped me cope as I wit-nessed her
monstrous metamorphosis was that for
sure they would find a cure for my mother,
who had obviously inherited the disease.
Then the same thing happened to my
mother. She would fall asleep on the
kitchen floor, the bottom of her feet black
and excrement on her tattered clothes, not
allowing anyone to touch her or to help
her. As she became vile and violent and I
plotted ways to kill her, the thought that
helped me cope as I witnessed her
monstrous metamorphosis was that for sure
they would find a cure for my brother.
When my brother was officially
diagnosed, his wife had a massive
stroke. She was 47 years old. She
couldn't wrap her mind around the vision of
her future, losing her husband and possibly
her two boys to Huntington’s disease.
When my brother stopped grooming and
start-ed in on the incessant chattering, the
sleepless nights, the isolation, the chill
factor in my heart sank below safe. I
stayed up one night shiver-ing with the
truth. I froze. I was losing my big brother.
He is now in diapers, locked up in an
Alzheimer's ward and I am beginning to lose
hope that they will find a cure for this
disease in my lifetime.
I am the first female in four generations to
be born healthy. My younger sister and I
don’t have the gene so we get to be the
caregivers. Together we can share the
unspeakable, the memories, the atrocities,
the macabre, the grotesque, the horrific
dismantling of our fam-ily. This diabolical
disease is like a serial killer, hunting
my family down. It hides as an aberrancy
on chromosome four and tortures its victims
slowly. My mother weighed 78 pounds the
last five years of her life. I could see the
blood flow in her veins and arteries. I could
see through her. The hardest thing to
remember when I looked at her was how
much I loved her.
Yes, we need support for research in
order to find the cure and we need the help
and support of legislation to make it
through the day. We need the Statewide
and National organizations support as well.
Caring for our loved ones is emotionally
and financially drain-ing and getting help
should not make things even harder. So
why is it?
Last week my brother was admitted to
Hospice. That was hard enough. My
whole life flashed before me and for a
moment I let those feelings out that are
kept locked away in memories I can no
longer share with him. Again I enlisted in
the war against this disease and set out to
arrange for the donation of his brain to
research like I did with my mother. The
memory of that experience is etched in my
soul. I remember how I felt while her
body was transported to three
different places for the retrieval of her
brain and tissues. The noise of the
demolition in my head was louder than the
mantra I tried to drown it out with. This will
help to find the cure…this will help to find
the cure. I was so grateful to receive the
letter from the brain bank in Los Angeles
expressing their gratitude for the price-less
gift that arrived safely.
Huntington’s disease (HD) is hereditary.
We don’t have a choice as to whether we
will become symptomatic if we have the
gene. If something else doesn’t kill us, HD
will and it starts early and ends late in life.
My Grand-mother was young when she
began to die of Huntington’s disease. In the
end she was sleep-ing on newspapers and
eating out of tin cans and the thought that
helped me cope as I wit-nessed her
monstrous metamorphosis was that for
sure they would find a cure for my mother,
who had obviously inherited the disease.
Then the same thing happened to my
mother. She would fall asleep on the
kitchen floor, the bottom of her feet black
and excrement on her tattered clothes, not
allowing anyone to touch her or to help
her. As she became vile and violent and I
plotted ways to kill her, the thought that
helped me cope as I witnessed her
monstrous metamorphosis was that for sure
they would find a cure for my brother.
When my brother was officially
diagnosed, his wife had a massive
stroke. She was 47 years old. She
couldn't wrap her mind around the vision of
her future, losing her husband and possibly
her two boys to Huntington’s disease.
When my brother stopped grooming and
start-ed in on the incessant chattering, the
sleepless nights, the isolation, the chill
factor in my heart sank below safe. I
stayed up one night shiver-ing with the
truth. I froze. I was losing my big brother.
He is now in diapers, locked up in an
Alzheimer's ward and I am beginning to lose
hope that they will find a cure for this
disease in my lifetime.
I am the first female in four generations to
be born healthy. My younger sister and I
don’t have the gene so we get to be the
caregivers. Together we can share the
unspeakable, the memories, the atrocities,
the macabre, the grotesque, the horrific
dismantling of our fam-ily. This diabolical
disease is like a serial killer, hunting
my family down. It hides as an aberrancy
on chromosome four and tortures its victims
slowly. My mother weighed 78 pounds the
last five years of her life. I could see the
blood flow in her veins and arteries. I could
see through her. The hardest thing to
remember when I looked at her was how
much I loved her.
Yes, we need support for research in
order to find the cure and we need the help
and support of legislation to make it
through the day. We need the Statewide
and National organizations support as well.
Caring for our loved ones is emotionally
and financially drain-ing and getting help
should not make things even harder. So
why is it?
Last week my brother was admitted to
Hospice. That was hard enough. My
whole life flashed before me and for a
moment I let those feelings out that are
kept locked away in memories I can no
longer share with him. Again I enlisted in
the war against this disease and set out to
arrange for the donation of his brain to
research like I did with my mother. The
memory of that experience is etched in my
soul. I remember how I felt while her
body was transported to three
different places for the retrieval of her
brain and tissues. The noise of the
demolition in my head was louder than the
mantra I tried to drown it out with. This will
help to find the cure…this will help to find
the cure. I was so grateful to receive the
letter from the brain bank in Los Angeles
expressing their gratitude for the price-less
gift that arrived safely.
I wish it could be that easy with my brother.
A few years ago I was informed that the
National Institute of Health (NIH) cut the
funding to the Los Angeles brain bank
and they could no longer accept donations.
I can’t imagine what could more important in
government spending than to cure a
disease. Of the many phone calls I did
make to try and find a brain bank focused
on HD research, I was able to speak with
some-one from Los Angeles. They
reassured me that they were still functioning
albeit with limited funding, that they still had
some of my mother’s caudate nucleus (the
area most affected by HD) and basal ganglia
and that they are able to share it with other
research centers. They encouraged me to
pursue registering my brother’s donation
since it would be most valuable to have two
generations, a mother and son, to study how
different family members manifest the
disease. I did not allow myself time to think
about those parts of my mother’s brain that
may be traveling around the world like she
so loved to do before she got sick. Instead
we tried to figure out how to get my brother’s
brain to Los Angeles without the funds to
pay for the retrieval. After a few days we
knew it was futile.
I made so many inquiries via google; phone
calls, emails and faxes. Oddly enough,
many of the support services online offer
phone numbers that are no longer in service
or incorrect, which is the case with the
Harvard Brain Bank that lists 1-800-Brain
Bank as the number on their home-page. I
talked to people who, like most people, don’t
even know what HD is. I spoke with
someone from the Huntington’s
Disease Society of America (HDSA) and
when I asked them why there isn’t a link on
our national organ-ization’s homepage I was
told that, “It’s a sensi-tive subject.” From our
local organization I was told that researchers
probably don’t need brains anymore since
research is now being done at the cellular
level. NOT TRUE!
Finally I was connected to the Harvard
Brain Tissue Resource Center (1-800-
Brain Ban), http://www.brainbank.mclean.
org/ and after several days back and forth
we have success-fully registered my brother
for donation. It’s never a sure thing they tell
me. If my brother dies at night or on the
weekend we will definitely be racing against
time to get his brain and tissue retrieved
while it is still viable. I was told that the
pathologist they contract with from Regional
Pathology and Autopsy Services (RPAS),
http://www.regional-pathology.com/, doesn’t
like to get up in the middle of the night. I did
speculate that disturbing his sleep in this
instance is prob-ably as rare as Huntington’s
disease. There is only eighteen to twenty-
four hours for them to retrieve my brother’s
brain and fly it from Napa, California to
Belmont, Maine. Could it be any farther?
My enlistment in the war against
Huntington’s disease makes me a lifer
and a worn out soldier. I no longer attend
support groups because I don’t want my
anger to cloud the collective
consciousness. I don’t think it offers much
to be discouraged after generations of lost
hope. I have written to legislators be-cause I
think that helps and I will push myself in
Caregiver Olympics, which includes
supporting research. I also write about my
experience be-cause I like to believe that it
helps and this helps me to cope. If you’re
out there and you read this and you have
the power to help, we need you. Our
families are dying the most gruesome,
grotesque death. As I mentioned, HD has
been called the diabolical disease of
man-kind. I had to look diabolical up in the
dictionary. It means from the devil. If I
believed in the devil I would agree with this.
A few years ago I was informed that the
National Institute of Health (NIH) cut the
funding to the Los Angeles brain bank
and they could no longer accept donations.
I can’t imagine what could more important in
government spending than to cure a
disease. Of the many phone calls I did
make to try and find a brain bank focused
on HD research, I was able to speak with
some-one from Los Angeles. They
reassured me that they were still functioning
albeit with limited funding, that they still had
some of my mother’s caudate nucleus (the
area most affected by HD) and basal ganglia
and that they are able to share it with other
research centers. They encouraged me to
pursue registering my brother’s donation
since it would be most valuable to have two
generations, a mother and son, to study how
different family members manifest the
disease. I did not allow myself time to think
about those parts of my mother’s brain that
may be traveling around the world like she
so loved to do before she got sick. Instead
we tried to figure out how to get my brother’s
brain to Los Angeles without the funds to
pay for the retrieval. After a few days we
knew it was futile.
I made so many inquiries via google; phone
calls, emails and faxes. Oddly enough,
many of the support services online offer
phone numbers that are no longer in service
or incorrect, which is the case with the
Harvard Brain Bank that lists 1-800-Brain
Bank as the number on their home-page. I
talked to people who, like most people, don’t
even know what HD is. I spoke with
someone from the Huntington’s
Disease Society of America (HDSA) and
when I asked them why there isn’t a link on
our national organ-ization’s homepage I was
told that, “It’s a sensi-tive subject.” From our
local organization I was told that researchers
probably don’t need brains anymore since
research is now being done at the cellular
level. NOT TRUE!
Finally I was connected to the Harvard
Brain Tissue Resource Center (1-800-
Brain Ban), http://www.brainbank.mclean.
org/ and after several days back and forth
we have success-fully registered my brother
for donation. It’s never a sure thing they tell
me. If my brother dies at night or on the
weekend we will definitely be racing against
time to get his brain and tissue retrieved
while it is still viable. I was told that the
pathologist they contract with from Regional
Pathology and Autopsy Services (RPAS),
http://www.regional-pathology.com/, doesn’t
like to get up in the middle of the night. I did
speculate that disturbing his sleep in this
instance is prob-ably as rare as Huntington’s
disease. There is only eighteen to twenty-
four hours for them to retrieve my brother’s
brain and fly it from Napa, California to
Belmont, Maine. Could it be any farther?
My enlistment in the war against
Huntington’s disease makes me a lifer
and a worn out soldier. I no longer attend
support groups because I don’t want my
anger to cloud the collective
consciousness. I don’t think it offers much
to be discouraged after generations of lost
hope. I have written to legislators be-cause I
think that helps and I will push myself in
Caregiver Olympics, which includes
supporting research. I also write about my
experience be-cause I like to believe that it
helps and this helps me to cope. If you’re
out there and you read this and you have
the power to help, we need you. Our
families are dying the most gruesome,
grotesque death. As I mentioned, HD has
been called the diabolical disease of
man-kind. I had to look diabolical up in the
dictionary. It means from the devil. If I
believed in the devil I would agree with this.
| Once more I find myself writing as an outlet for unbearable frustration, and once more I hope that what I relive as I write this will help someone else, that it will make a difference by making it easier for the next person. So I face my feelings head on, and dissect my experience so that every part of it is examined, studied and used for the benefit of others. This is courageous work that takes a brave heart, not only to write this but also to read it. I’m asking any of you brave enough to share this with whoever can help us make the changes we need to make, and if you don’t feel that brave, I understand. I don’t always feel brave. |
 |
 |
 |
| Newspaper – Radio – Advocate www.TheHuntingtonsPost.org www.Help4HD-International.org Help 4 HD - The HD View www.BlogtalkRadio.com/Help4HD Facebook: Help4hd/The HD View LinkedIn: Melissa Biliardi Twitter: MBiliardi Skype: Melissa.Biliardi Cell: 805.441.5618 |
| Stay Connected |
 |
| © 2012 By Sharon A. Dunn, MA. All rights reserved |
 |
 |
| CLICK 'LIKE' ON FB Sharon Dunn Photography on Facebook Sharon Dunn on Facebook |
| Download this story |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
| By Sharon Dunn - August 21, 2012 CONTRIBUTING WRITER Sharon@TheHuntingtonsPost.org |