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Topic: Huntington's Disease
These are a Bunch of HD Pocasts.
http://www.patientpower.info/listenhealthtopicdetails.asp?showid=HR012308&To
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These are a Bunch of HD Pocasts.
http://www.patientpower.info/listenhealthtopicdetails.asp?showid=HR012308&To
Two huge breakthroughs here. This will be our year for
breakthroughs. More and more hope comes daily. This is tempoary.
No one needs to die anymore. Plan your future.
'Intrabody' can mop up mutant protein in Huntington's disease model
http://www.eurekalert.org/pub_releases/2008-05/eu-cm052308.php
Mechanism Of Action Of Antibiotic Able To Reduce Neuronal Cell Death In Brain Uncovered
http://www.sciencedaily.com/releases/2008/05/080509145457.htm
Yesterday my meds got changed. MY HD Physiatrist DR Trew,
sent an email to my Doctor here. Dr Walker. When they put
me on Serqiol, I did not know the rest of his specifactions.
My Docter did not tell my family either. I was supposed to be
weened off Welbruitin. Along with my Serqiol I am supposed
to take Epival. They were supposed to go together. That is
why the Serqiol did not stop the anger and irantional
thinking. The Epival is supposed to do that. That is what I am
doing now. That keeps me up. I was up at 12 last night. Could
not sleep. I am going to try taking them earlier. I feel
exhausted too. They might have to adjust the Epival. Woke up
at 7 this morning. I am going to change the HD information
page with my new meds. We are hoping they work. My Dad
and Trevor are going to watch me like a hawk. I don’t want to
go to the hospital again. Let’s learn to love our life again. Let’s
learn to accept HD. We are all going to get sicker. Loving our
life means accepting HD. We can’t move on until we accept.
HD is what we are. It is how we chose to fight HD that makes
the difference. Accept HD and find the hope. We have it. Own
it. Own HD it is not going to go away. Until we are cured.
Shorty. Until then we will have it. Believe me when I say HD is
temporary. We will be cured soon. None of us has to die.
We do not know if my Zyprexa is working anymore. I have to
go to my Docter today. We need to review my meds. Last
night I felt angry amd irantional. For the past week I have
been feeling like that. My Nurse will take me there. We are
making appointments to go to Calgary in July. The social
worker sent us a message. Everything is ok. Today no
chorea. I am so healthy. Except for mentally. I need to get
something that works more than a month for me. I am so
healthy today. It is werid one day healthy. The next very, very
sick. Let’s find the hope deep inside us. Let’s find our hope
implanted in our hearts. We know now that we can get cured.
We know now that everything will work out. Plan your life.
Forget HD. Just live. This is all we have. Not for long. We have
HD. We can fight you every day. Every way, we have to fight
you. We need control. We need the right to smile. To laugh.
We have to fight for every one. Only we know how hard that
fight it is. We should never lose soght of what really matters.
We matter.
Today I have the day off. Trevor is here. On the days off, I don’t
have to cook. We had the Occupational Therapist come on.
She put bathroom bars in today. I have hard to me getting
into the tub. We are getting more put in two weeks from now.
Trevor is getting burnt out. His new job will not let him have
respite time. He is working ten hour days. Two jobs. He has to
wait three months until that will happen. Horrible. Yesterday
I fell hard. The family meeting will happen July 4th.The
phone conference with my family there and the doctors
in Calgary and here. We are making appointments to see my
Doctors soon in Calgary. We have a new social worker.
Trevor has sent her emails with no reply. No idea about that. I
loved Loretta so much. Our old one. Said we can still pop by
the hospital and see her. We have to appreciate our life. We
can have a good life. We have to make it. Plan you dreams.
Make some goals. I still want to see the ocean. If you make
plans you have a reason to get up and live. I want to run this
until I am incapacted. Give yourself a reason to live. Goals
and dreams will help you achieve that. If you are sick it is
more important. We need just only one reason to live for.
Make it for yourself. This is all we need. Plan and live. Plan
and love. Plan to forgive. Plan you life with out HD.
Today I won another award. It is a personal site excellence
award. I love this one. It has the same Callow Lily’s that I used
at my wedding. Thank you for the award. What they have to say…
We appreciate you applying for one of our esteemed
awards. Your site is most deserving and I am pleased to
attach our Personal Site Award for inclusion in your Award
Winners section. Keep up the great work. You are an asset
to the internet community.
I am winning award after award here. I have been getting
sicker and sicker everyday now. I have been all over the
place. I have such bad chorea. That barely goes away. I was
confused yesterday while doing aerobics. I have to accept
this. I will get sicker. We all will get sicker. That will never
take away the fact that we will be cured soon. Never lose
sight of that. We need to know that we need not fear HD. We
must see HD for what it is. A temporary part of our lives. Soon
as we get cured. That is what it will be. Never lose hope. We
can live our life. I am getting sicker. But still happy.
Accepting HD is key. Live in the shadows. It will creep up and
catch you. I accepted a long time ago that I had HD. It may be
ugly at times. It is not you. It is the disease. I get that a lot
form Trevor. I am telling all of you. Forgive yourselves. HD is
not us. We are the same people that have HD. The diagnosis
does not mean that we are HD. Forgive no matter how bad we
can be sometimes.
Yesterday was even sicker then the last day. I spilled
everything and anything. I had trouble eating too. Trevor and
I went to dinner. I spilled everything. I spilled my tea. Today I
had trouble seeing. I could not see Trevor. I also had an
auditory hallucination today. It was s a cell phone alarm.
Today we are making a slow cooker meal. No matter how
hard things get. We have to remember that things can only
get better. We can have hope and simple belief for the
future. I always think of how this is temporary. HD is
temporary for all us. None of us has to die anymore. Not when
the cures come. Never lose site of the cures. Never lose sight
of curing HD. I still believe stem cells will be the first. The first
of many breakthroughs. No one has to die anymore soon as
we are cured. This is not a life sentence. HD is not going to
take our lives. It won’t take mine. Never lose sight of that no
matter how bad. That is what I always do. Happy Memorial
Weekend to everyone from the States.

Thank you George Bush for getting all of the American HD families
the right to not be discrimated against. That is such a
breakthrough. Get any job you want. Nothing stands in your way. No
more discrinmation. I added Trevor and I's Wedding Album. I added
that to the Photos section.