Saturday, May 31, 2008

Donations

I now take donations on my site. I have a link that leads to theCanadian HD Chapter. I need to help us get money around the HD MayAwareness Month. I will be keeping it permanently. A lot of peoplewander in here to see my awards. They have to learn about HD now too.If they want to donate there is now a way. I am looking in toselling Amaryllis lily's. Creston is full of them in all of theflower shops. People love flowers here. I have never done it before.This will be my first time. I see them all over the place here. Iknow a lot of my good friends would buy some. My landlord's have HDin their family too. Yesterday we made a good stir fry. It was mycreation. No recipe or anything. I have a habit of my arm fallingasleep while I sleep. I yelled for Trevor I was in so much pain. Icould not move my arm for ten minutes. Ouch. Yesterday I was reallysick. I have noticed in the morning I am HD free. Then I get sicker.I keep waking up. I think I might need sleeping pills. This Serquilgives me energy. It makes me wake up a lot too. Last night I woke up4 times. Live your life the way you want to. Never let HD ruleyour life. That is yours. That is mine. I will not let HD take awaymy dreams and goals. Never give up on yours. It is your life. Is yourlife worth fighting for? Yes it is. Everyone of our lives is worthsaving. Never give up on your life. Live. We won't have HD for long.Not long and we will be cured.

Friday, May 30, 2008

More and More updates

I updated The Importance Of Testing Page.

Hope Flows

Next month is HD awareness month. A big month for us. My
meds give me major energy. I was used to be sedated.
Yesterday I was so sick. I was the sickest I have been. Could
hardly walk. Hardly talk. Could not get into my pajamas. I
burnt my hand. I also fell outside hard and skinned my leg.
My Nurses are now worried when I take my baths. They think
that Trevor should be there. I still think I am fine there.
Whenever I go to fall I still catch myself. Just today is the first
fall. We have the grab bars up. So sick,I have been having
trouble eating. I am trying to eat breakfast. Got an upset
tummy. Yesterday I also had an all hallucination day. Last
night I saw a very scary face in the blind. Another scary color-
visual. Very scary. Everything looked so real. I am feeling
healthy this morning. I did yesterday morning too. Got really
sick around 4. My brother Gary is back to work. He works two
days a week. He works at an auction mart. He sells cows and
horses. My Dad has convinced me to look for a volunteer job.
There are hard to get though. I would love to volunteer with
animals. They have an animal shelter here. See if I can find
something. My little Lucky. We are the hottest place in
Canada. The past week. Poor little Lucky. I take the bottle of
water. Shortened his walks. It still gets to him. Love our lives
for what they are for. We have HD. It is a greater reason to
live. A greater reason to hope. A greater life if what we need.
Fight for that. I try everyday to find that. They purpose for
living. We all can find a reason to fight. A reason to live and
accept HD. Until we are cured we have this. We have HD.
Everyone knows. When Gary got sick before Dad got him
tested we knew. Since he was 21. We noticed little changes. I
am glad he is back at work. He feels important by working He
was so depressed. I felt bad because I have this website. He
had nothing. Me, this is my work. I don’t get paid. It is good
work. Everyday I get up sick and give everyone here a glimpse
of hope. Every single day non stop. I even had home care give
me time to do this. I will never give up this site or blog. I will
never let home care slow me down. We all need so much
hope. We need it bad. Having this mission adds so much to
my life too. I still feel bad that I did not get this idea sooner. I
think it had right timing. When I first starting have mental
symptoms. Never lose sight of the cures and treatments for
us

Thursday, May 29, 2008

Meds Change

Yesterday my meds got changed. MY HD Physiatrist DR Trew,sent an email to my Doctor here. Dr Walker. When they putme on Serqiol, I did not know the rest of his specifactions.My Docter did not tell my family either. I was supposed to beweened off Welbruitin. Along with my Serqiol I am supposedto take Epival. They were supposed to go together. That iswhy the Serqiol did not stop the anger and irantionalthinking. The Epival is supposed to do that. That is what I amdoing now. That keeps me up. I was up at 12 last night. Couldnot sleep. I am going to try taking them earlier. I feelexhausted too. They might have to adjust the Epival. Woke upat 7 this morning. I am going to change the HD informationpage with my new meds. We are hoping they work. My Dadand Trevor are going to watch me like a hawk. I don't want togo to the hospital again. Let's learn to love our life again. Let'slearn to accept HD. We are all going to get sicker. Loving ourlife 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 makesthe difference. Accept HD and find the hope. We have it. Ownit. 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 istemporary. We will be cured soon. None of us has to die.

HD Podcasts

2 Huge Breakthroughs

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

Wednesday, May 28, 2008

Med Change

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.

Tuesday, May 27, 2008

Zprexa Problems

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.

Monday, May 26, 2008

Grab Bars

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.

Sunday, May 25, 2008

More Awards

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.

Saturday, May 24, 2008

Happy Memorial Weekend

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.

Happy Memorial Weekend


Living Will

We are talking about getting a living will. I want one that will help me get saved. The opposite of the DNR order. I want to be recesited. In the nursing home we could not use first aide. We did not know if the seniors wanted to be brought to life. There is a study that sedating meds are bad for us. I am putting that in there. Transfer everything to Trevor. If he is sick. Transfer to my Dad. I felt bad for for days now. Trevor did not know that we had to ween me off Welbruitn. I was with out. I felt depressed. I felt anxious. Could not eat. Felt sick. Yesterday I feel and hurt myself. I almost tripped and feel 7 times. I was very unbalanced. I also put on everything inside out. Trevor had to dress me again. I even put my shorts on inside out. My Lucky is getting climatised which is good. Shirley will come in half an hour. We were the same kind of Nurse. We have lots to talk about. Try to live like only you can. So many people in crisis today. Somedays it is like that. I wait around the HD support groups to find out if people need help. I know one month everyday there was someone there. It is the distress center still in me. I also understand HD. I have it. I made this site to help people live for the first time. In a few years we won’t have HD to worry about. We will be cured. We will live free. No more HD people in crisis. Don’t worry. I am not. We will get sick. Then the cures will come. I just want this will in case. I am thinking of doing more HD trials. I tried for years. I was too young. I could do the COHORT one. It is I the visits. They want to watch and learn about the progression of HD. I have done that for five years now. I am 25. Old enough now. Live for the future. Fight for the now. Fight for your future. Fight HD, Fight your happiness. Our lives are on the line. Fight as hard as you can.
The article that tells about Haldol.

http://www.everydayhealth.com/publicsite/ShowArticle.aspx?IsP=news/615/news615819.xml&cen=Advertise With Us

Friday, May 23, 2008

No More Genetic Discrimation Bill passed

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.

Lucky's New Hair Cut


Cure will Come

Yesterday I was so, so sick. I was tried. That made it worse. I
almost fell three times. Walking on the balls of my feet. My
chorea was so bad. The worst HD day I had. I was so
confused. Today I think it will be the opposite. Our fridge
broke down two days ago. The Landlords put in a
replacement. A new one is coming though. Lost all of that
food. My Nurses helped me make a yummy meal. When they
came when the Nurses came they expected a barking and
mean dog. They were surprised when they came in. They all
were like he does not bark? No he does not. They thought
that all small dogs bark. Lucky is never mean. Speaking of
dogs. My Dad’s boxer Zena is sick. She has teeth problems.
She chews on the tennis ball fluff. Anyone that has a dog that
uses them stop that now. Trevor’s Dad’s poodle uses them
too. I never want to give up the fight for happiness. The fight
for hope. No one should ever give. HD should never take our
life and fun away. It wants too control us completely. If we
fight then we have a chance. Fight every day. Every way.
Remind yourself of the cure. It is real. It will come. There are
many stage three trails out there. Stems cells I still believe
while be the first. Don’t ever give up hope. This is all real. We
are too nice of people to let lavish in pain forever. We won’t
have to fight when we get cured. We will never have to deal
with HD again. Plan your future. Plan it ever with HD. Never give up. Never let HD win.

More Updates

Today there was a parade in Creston. Elyissa and Nefertiti
and I went. It was fun. I have been felling more confused
every day. When doing aerobics. I went to meet Trevor and
went to the wrong restaurant. I am totally losing my mind.
Getting more confused. My chorea is getting worse too. I am
twitching all over. Accept this is HD. It will getting like this
before we are cured. We have to believe and fight towards
hope for our future. Fight every day. We can win. We will cure
you HD. We will fight with our happiness and laughter. We
need to learn to love HD. To live, we need to love HD. We have
to cope. We have to fight. Today I have won my 50 th award.
This is another hard international award. 50 awards in 9
months is unheard of.


What they say about me


Your story can't help but give inspiration and hope to others.
One of the problems with serious disease is the feeling that
one is fighting it alone. I suspect your site will help many
people throughout the months and years to come.
I am always surprised when I win these awards. Who knew that my page would win this many.

Thursday, May 22, 2008

Home Suporrts and Hope

I have been falling a bit the past few days. Yesterday I was
walking on the balls of my feet. Trevor told me to walk on my
feet. I think I am coming down with a cold or something. My
chorea has been so bad. My Nurse Shirley will be here
shortly. I like blogging now before she comes. She is really
nice. Every morning we do dishes and chat. Then later, we
make supper. I am going to make some kind of chicken meal.
Trevor is loving coming home and not to think of making
meals. This is the real HD. We all get sicker. We are all going
to get cured. That is the difference. It will happen soon. I
have the worst time typing and not making spelling
mistakes. I do everything on Microsoft word. Even my emails
and everything. I am getting that bad. I will still do this even
through HD is making my spelling bad. I not worried about
getting sicker. I write like a Doctor. I have accepted it. I also
know that we will get cured. Hold on to the knowledge. We
are too good of people to let this HD happen with no reward.
Never lose hope in that coming true. We will have our time to
live. Untill then live with HD. It is temporary. We have to learn
to live with HD. That should be easier since we are going it
get cured. Never lose sight of the big picture. We are going to
all get cured sooner then later. Believe in you life with HD.
Everything will improve. Accept it.

Wednesday, May 21, 2008

Hope Builds

My computer is acting screwy. Trevor is going to reformat it.
Last night I was scared too. I kept hearing scary things. I
hope my meds are working. I have been really angry lately. I
would unintentionally start shouting at Trevor. Very
irrational. Yesterday I was the sickest I have been. So was
my Lucky. He was so sick yesterday. He started puking. We
think something went down wrong. Poor little Lucky. He is
better today though. Today will be an HD free day. My Nurses’
are coming over in 15 minutes. What is weird I missed them
They have turned me into a Chef. The last meals I did myself..
We must never lose hope. Ever. That is all that sustains us. All
that keeps us going. Hope. That one word that can move us.
Hope that we will get cured. It will happen sooner than later.
Never lose your hope. Even when everything gets harder. That
is when it is more important. We need all lot of hope to make
it through the tough days of HD. We need to fight and never
lose sight then. Never ever forget that we are going to get cured. Everything will work out. It will happen soon.

Tuesday, May 20, 2008

Cranbrook

I am so sick today. Last night I was so confused. It is carrying
on today too. I have been drooling a lot too. The past three
days it has been getting worse. So has my confusion.
Yesterday I was the healthiest I have been. Not a single thing
happened with HD. Today we went to Cranbrook in the
morning. Poor little Lucky got sick and puked. Tomorrow I
have the Nurses back. Since I have been taking this ensure, I
have gained lots of weight. I no longer look gaunt. Healthier.
We need to fight HD. You can’t claim us. You can’t take the joy
out of our lives. We are the ones that need to be joyful. We
fight HD just to get there. Only we know how hard it is. Every
day, To wake up and fight again. We deserve to be happy.
Let’s fight together. Let’s live our life the way we want too. I
won three huge awards today. I was sent three awards from
one person who loved my site. They are hard ones to get too.
I can’t believe it. Every award I am surprised. I go through
periods where I* don’t get awards. Then they come easily and
a lot of them. I am glad. More people know about HD because
my site is the most awarded site. People flock in and see
what I am up too. I want people to be aware of HD. I am the
only person that has it that people know. They never even heard of it before.

Monday, May 19, 2008

Blossom Festival

Yesterday I was scared. We were walking with my Hubby and
Lucky last night. I heard a bunch of drunk people, they were
no there. I saw bugs all around last night. Scary... My chorea
is getting so much worse. There will be times when I can’t
control my movements. I had trouble eating last night with
Trevor. Yesterday was bad HD day. There is a Blossom
festival. In Creston. Today we are going to check out the
midway. That is why that parade was for. Even though we are
getting sicker. We realize this is the way it will be. We will get
a bit sicker before we get better. We have to know true
darkness (HD) to know true light (without it). This will be a life
lesson. We are chosen to have HD for a reason. Accept that.
There is also a reason why we will get cured sooner. I never
sit here and think why me? Pity leads me somewhere I do
not want to go. All of you should try to fight. HD makes us
stronger. Makes or breaks our life. Depending on how we
deal. Learn how to love you life. Live you life, Laugh. Plan our
future together with on HD. WE will have our life back soon.
Love HD. Live for you. Live for me. We all have to fight HD. Together we are string.

Friday, May 16, 2008

Hallucinations

I was hallucinating like crazy last night. I saw a moon that
was not there. A full moon. I also heard someone getting into
our house through the balcony. I got up and checked. I
always think that is real when I hear people breaking in. I
have been HD free for the past three days. I have a new home
support lady coming up shortly. Yesterday I made the
yummiest stir fry. I am glad I am no longer afraid. They love
Lucky. They were expecting a barking mean dog like the
other ones. They are surprised. Our Lucky is not vicious.
Never barks or bites. He is a sweetie. The best from that
breeder. The rest were snippy. I had to save another cats life
on Saturday. This one was even closer to getting run over.
This guy was going so fast. The cat was just sitting three. I
need to start a cat saving business. I had my animals ran
over all the time. I will not let that happen to someone else.
My brother Scotto is way too scared to get tested still. With
our track recond who would not be? Everyone but Lisa has it.
Something horrible is happening to Trevor's Aunt. She might
have MS. She will get the diagnosis soon. My Mom’s best
friend inthe hospital in Rimbey had MS. I looked after her.
They were both in 35 when she was admitted. My dad’s best
friend has it too. This just hurts me. Not only was my cousin
killed tragically. Now we have to deal with more. We are all
showing signs of HD .All of this happened in three months.
This is worse than when my Grandmother and my Aunt died
two weeks from each other. I found out I had HD in the time.
My Aunt had HD. My grandmother died of Lung cancer.
Whenever someone gets a diagnosis it is another grief.
There are two of us that need to get tested. There are three
of us that are sick. Just accept HD. I am going to get worse. So
will all of you. What keeps u going is our faith. In the cure,
Faith that everything will pass over. We are all tough
because of what we have been through. We can handle that.
Believe in the future without HD. We can get there. We can
get stronger each day we fight HD. Only we know the struggle
inside. Only we know the fight that we have to make every
day. Every smile and laugh takes lots of work. Only we know.
Every second of fighting is always worth it. We can’t let HD
bring us down. We can fight you. We have the unending hope
for a cure. Shortly that will happen.

Thursday, May 15, 2008

50th Award

I have just won my number 49 award. I am one away from 50. I
am so excited. The most awards for any new site. This is
another international one to boot. In 9 months of having my
site up. How does a person with HD do this? I started this
when I was sick. Go full on to what you want. I never let HD
rule my life. Never let HD rule your life. It is yours to do what
you want. Live your dreams.That is why my dreams are
coming true. I wanted to make a positive site that changes
lives. I also wanted to make an award winning site. That is
secondary. I always try to win awards for my Mom and Dad.
Dad pays for my site. He paid for my schooling. I have HD. I
could never pay them back. Especially with early onset. I also
help us get the word out about HD by winning these awards. I
am internationally recognized. I am bringing in other people
that do not about HD. I am getting word out. I am helping us
get more people to know about HD by winning all of these
accolades. It will always be that way. Daily hope is what I
started this for. I do not care if I am immobilized and can’t
move. I will never stop this. There is nothing else for
everyone with HD to get hope from. I understand having HD
how bad no hope is. I know there are people that want me
too stop. I am not naming names. The person that came out
with that article saying we would never get cured. Two days
after mine. Do not listen. We are going to get cured. It will
happen. I started my hopeful revolution. Will never stop ever.
My home support workers know that too. I have it too. It does
not go telling us matter of fact. We need more. We need
actual hope. Need it so bad. We also need people to know
how hard this is. Everyday how brave we all are. We know. Now other people know.

Wednesday, May 14, 2008

Happy Victoria Day


Fight With Everything You Got

We are going to get meds. Trevor asked for his check early
form his Dad. We were debating divorce. If we did it we would
have money. We could still be together. They expect Trevor to
take care of us. Insane it is. Trevor has a new job. He will get
benefits in three months. In those three months we are
going to have to pay hundreds of dollars worth of meds.
Today feel a lot healthier. I have a clear mind. Shirley came
over. We started our slow cooker meal. I am not surprised
that Gary does not have his meds working. The Serquil works
for a while. The it gets worse. I am still grieving over Jenny. I
saw some school busses here. I saw the bus I saw on the
news. I still need Trevor to hook up the scanner. He is busy
working two jobs to afford everything. He also does part time
for his Dad. We are fighting HD together. Let’s take the pain
and put that away. We can live without the pain of HD. We can
learn to live without it. HD is fighting against us. It is fight and
we are fighting. Our life is on the line every day. Never give up
fighting. Never stop fighting. Never stop. HD can win. We
cannot let it take our life away. Take away our meaning of
our life. There are so many reasons to fight. We need to live
with HD. We need to live period. We need meaning. A reason
to live. Live and live your life. Accept HD. Accept that we are
getting sicker. We are going to get cured shortly, until that we are sick. Own HD. Own your life living with HD.

Tuesday, May 13, 2008

Always Fight

I am feeling really sick today. My HD is so bad. I am
completely out of it. Having g total brain fog. My home
support situation is worked out. They will come at 100 in the
morning and 4 to 5 pm. I am happy. They will come at 10 to do
slow cooker meals with me. I am, felling more capable. Every
night I make a meal. With a little help. I thought they would
steal my independence. They are making me more
independent. I had an occupational therapist come over. She
is getting us grab bars for the bathroom. We are going to
work all of that out. They are all going to have a conference.
All of my Doctors and my family. They are coming out with
plans for my care. We signed up for pahamrphamicare here.
They are making us pay 1000 dollars of meds before I get
covered for 75 percent. That is horrible. How can we come out
with that? My Dad sent us 500 hundred dollars for my meds. I
have not many left and we can't afford too. We just need to
believe that things will get better. They can only improve.
That is what we need to go us through, pure faith and belief.
We will have our day of sunshine when we get cured. All of
this will be worth it. Don’t ever lose hope in the things that
keep us alive. The things that get us going. There are many
reasons of why we need to survive. We will get cured shortly.
Why not live your life knowing that. We have a future. We can
get there. We just can never lose hope. That is all we need is
hope. We will get that day soon. The day were all of them
pain and worry go away. We will get there. It will come soon.
We will get cured. We have a future. Plan it out. Plan our
future. We can have that day of glory. It will come sooner than later.

Monday, May 12, 2008

Hope

I am unhappy with my home care workers. They are not
respecting me my time table. I told them to come at four. I
had to fit everything. In. They started showing up at 3:30. I
have to take a walk everyday with Elissya and Lucky. The one
day we were there for five minutes then they came. My walks
are down to 15 minutes now. From an hour I am not happy.
How am I supposed to build neurons? Last night I had to wait
until 5:30 to walk him. He pooed in the house. They need to
respect me. I was a former Nurse. I know my patients rights.
We have them. Sadly very few people know that. I am not
happy. They told me I could still have the walks. They are
taking all of that away. I started my own HD support group.
Every day I will send you blogs and hopeful information
everyday. If you need support. I volunteered at the distress
center. I am trained to fight anyones personal crisis. I was
planning either this or message board. When I got an
established base. To give back more. Make an impact. For the
past few days I have been healthy. My brother is having
problems with his serquil. It is not working that good now. I
had a hard Mother’s day. I missed my Mom. There were all of
those shows on TV about Mother’s day. This holiday I always
try to avoid. It hurts too much. Especially the divide with
Trevor’s Mom. I made a banner of my support group that
everyone can click. I am doing that through yahoo. Every day I
will email people hope. This never stops. We need hope to
counteract everyone’s negative message. We will live HD
free soon. I will keep out all of the trolls is what they call
them. People that have nothing nice to say. I had that happen
to me. I will not let them in. Be free with your feelings. Will be
free with my hope. We can get cured. We have hope. I can
give you this everyday now. HD means we have to live more.
We ne more hope. We need to counteract all the matter of
fact information. They don’t leave room for hope. I do. I give everyone hope. Take it. Live your life.

Sunday, May 11, 2008

Saturday, May 10, 2008

Run For The Cure

They are planning a run for the Cure on Septemebr 20. Donate now
or find info.
http://www.runtocurehd.com/

Possible New Treatment

A lot of hope for a new cure. That is amazing. My Mom was right. This
is our year for breakthroughs. Just beleive in cures. Plan your
future.

http://www.hno.harvard.edu/gazette/1999/06.17/huntington.html

My Mom

Tomorrow is Mother’s Day. I will forever love and cherish my
Mom. When she was alive I brought her flowers on Mother’s
day. No one could replace her in my eyes. She was and is my
Mom. Even though she died when I was seventeen. I was
devistated when she died. We were so close. I loved and
looked after her in the hospital. I missed two weeks of the
first semester of school. Nobody thought I could graduate. I
missed so much in every class. 4 chapters of everything. I
showed them. Graduate with good grades. I finished for my
Mom. When Trevor and I had our wedding I put up a picture of
her on a table, with flowers around it. Everyone was touched.
It got all of them in tears. They told me that my Mom would be
proud of me. Approve of Trevor. I loved her that much. No one
can replace you. She is the one that sent me two dreams on
me getting cured. It will happen soon. I believe my Mom. In
her first dream she told me I had HD. Two days before I got
my results. In the end my Mom would only talk to me. She felt
I was her salvation. I made her life that much better. My Mom
had a smile that could bring happiness. She was an amazing
seamstress. Made all of her own clothes. Her sister too. She
never tried to escape from HD. She was brave. She was my
inspiration in dealing with this. I could only hope to be as
brave as she was. I know she is probably proud of what I have
done here. I opened an HD door here. One that won’t close.
She was hilarious. We want future with HD. We demand
hope. I know she probably would be so happy. I am trying to
affect change for everyone that comes here. We do not have
to be unhappy. Not anymore. I did that Mom. She was my inspiration.

Friday, May 9, 2008

Psysio

Yesterday at Phsyio he had me do some exercises that would
make my chorea less. It made it worse. Every time I did a set
they got worse. Next time I will need to do stretching and
massage. We went for a walk so he could how bad my chorea
was. I was so confused yesterday. I went to the wrong
apartment building. Thought it was mine. Got confused when
I did the exercises too. Shirley and I made a slow cooker
meal. It was so good. She is going to come at 3:30. We need
time to make dinner. World War Two was the only way I
actually supported. We are happy that Hitler did not take
over the world. I am glad that thanks to the military we can be
free. Let’s enjoy our freedom and our lives. Let’s love all of
ourselves, including the HD. Forgive yourselves for what HD
made you do. It is the disease and not you. It makes you act
that way. Forgive and love yourself for what you are. I know
how strong everyone is when they have HD. Every day is an
unending fight that we can win. We can be happy. We can be
hopeful. We can be anything we want too. We have to fight
HD. Get the control back. Take our future back. All of that
belongs to us. We need to live. We need to not give up
everything. We need to get everything back. Take back our
lives. Take them.

We are all free and grateful


Thursday, May 8, 2008

Live Your Life

Yesterday a new home support worker came over and
helped me make dinner for Trevor. That was yummy stuff. We
made a stir fry. I was so sick the past two days. Really tired
too. Made everything worse. Had a hard time dressing. We
were talking I totally brain fogged out. I was doing aerobics.
Had a horrible toe seizure. They kill me. Today I feel it will be
a relatively HD free day. I have Phsyio today. Every time I go to
see him I am relatively healthy. Imagine that. Yesterday my
little Lucky was having some nightmares. Poor little guy. He
was wimpering and scared while sleeping.Let’s live life
together. This only shot at life we get. Let’s enjoy it. Let’s live
like we have nothing else. Learn to love your life the way it is.
Live like you are dying. Live and love your life until the cure
comes. Do not give up on yourselves. Do not give up in life. We
have to fight HD. Get control. This is our life HD. Give our
happiness back. Give our hope back. Give our future back too.
Give it all back. We deserve to have a great life. Do not let HD
take that away.Fight with all fo the strength you can muster.
This our happiness HD is trying to take awy. It is these basic
that we are fight so hard for.

Wednesday, May 7, 2008

Hike

Yesterday we went on a hike in the wildlife center here.
Trevor and I took Lucky out there. He loved it. He was so
happy. It was a nice hike. There were lots of animals all over
the place. I saw my first turtles. I love turtles. Last time I went
I missed them. They were so cute. I am planning to climb a
mountain this summer. I am blogging, I am trying to eat. I feel
like I am going to throw up. I am so glad for the ensure. I have
been spilling like crazy. Trevor’s Mom is still going against
us . They are afraid that I well get sick and it would cause
him to get sicker. We are going to get cured soon. I will never
be that sick. We do not understand why. Since I am off my
Serquil I am back to my old self. Have not got angry and
freaked out. The hallucinations are down too. I have not
gotten much now. Shirley will be here in half an hour. She is
the perfect Nurse for me. We are going to live. My Mom gave
us all of the signs. I think this dream was a reminder.
Remember that. We are so close to getting a cure. This is
what we need. A reminder. Be strong. Live. It will all be worth
it. We can have real tangible breakthroughs. They are
substantial. None of us are going to die anymore. We are all
going tom live together. Cured wholly. Never lose site of the whole picture. We will live HD free soon.

Monday, May 5, 2008

Home Support

My home support worker is amazing. She dropped by in the
morning to make sure I took my meds. We did the dishes. She
is really nice. They are givng me lots of time to work on here.
They came at 10:30 in the morning. Then they came back at 4
in the afternoon. We took Lucky for a walk. His leash broke on
that walk. Right where there was a mean dog there. She tried
to attack him. That was scary. We went to her house to get a
harness. Scary. I had that horrible foot spasm last night.
They kill me. I have never been in more pain in my life. I have
been falling a lot lately. I decided to put up all of the articles
that involve my family. I have also been struggle with a
depression for a week now. Yesterday I was brought to tears
I was so upset. We think it is because I know I am that sick
now I am having home supports. Trevor said that I am not that
sick yet. I am feeling better. Whenever I feel this way I listen
to happy music. Watch something on TV. We should never
feed our depression. If we do, we end up nowhere good. Fight
it away. With laughter and smiles. We cannot let it rule our
life. It is natural with HD to feel this way. It is how it works. It
is how we fight it that makes the difference. We deserve to
be happy. We have to fight for it. We have to wake and fight an
unimaginable fight. Every day we wake same thing. Let’s
show our strength. We can fight you HD. We have to fight for
every smile and every laugh. Once we get there it is always worth it.

Sunday, May 4, 2008

We are going to get cured

Last night I had another HD prophetic dream, I had a dream
where we all got cured again. It is going to happen soon... So
soon. We can live again. It will not be long and all of my
dreams come true. Never lose hope. We went to Nelson
yesterday. Took Nefertiti and Elissya with us. We took a ride
on the ferry. It was so fun. Went shopping. I love Nelson it is
beauftul. We took little Lucky with us. The poor little guy got
sick and puked all over me. We know we have a baby now.
Trevor and I would love to live there. Today is my first day of
home support. They will come in an hour. Tell me about my
meds. I am not scared anymore. Excited. I am not going to
stop my blog because I get sicker. I will not give up on you. I
will not give up on your daily hope. I will literally be
incapatceted and still blogging. Every life I save from
desperation and fear keeps me going. We need hope. We all
do. Especially when it comes to HD. We will get cured though.
Both of my dreams say so. No need to be afraid anymore. I
made that Mother’s Day Graphic of my Mom. I loved her very
much. She is all I think of for this holiday. I would always
bring my Mom flowers. I visited her almost every noon hour.
When she was in the hospital. I made her little games and
word puzzles. I was afraid of her getting bored. I was happy
when I was 16 and got work experience. Worked at the
hospital. I looked after her. Used to call me her salvation. I
found that out at her funeral. I had also played a huge part in
raising my brothers. Scotto is a mini me. Gary was more
rebellious. Whenever I go to see her gravesite that is how I
know we are going to get cured. She told me in the first
dream I had. That I was going to sick and I will be cured
quickly. Now the other one. Our path is set. We can live again. Plan your future.

Saturday, May 3, 2008

Stronger Than You Think

Today I spent the day with my best friend Elyssa. Trevor has a new
job. He works at home builders. They have benefits after 3 months
which is good. Today I am having serve brain fog. The past two
nights I was scared. I have been petrified. Very scared. Today I
have been feeling less HD symptoms. Every day I still do aerobics.
Keep this up. We need to build neurons. Keep running. Keep being
active. The longer we are active the better we are. Everyday I go out
with Lucky and Elyssa everyday with Lucky. He meets lots of dog
friends on his walk. Our little boy. When he was at the Hair Salon.
She said he was a smart dog. All of the other dogs from our breeder
where snippy. He was the best of that breeder. We were Lucky. Keep
up your life. Do not surrender your life. Live your life. Keep on living.
Soon as we give up. HD will claim us. It is so important to fight. We
are fighting life and death here. We are. We could lose our life. If
we do not fight. Use that strength. Fight for your right to be happy. To be hopeful.

Friday, May 2, 2008

Live

I met with my home support head Nurse today. She seems
nice. I told them that I need time to run this site. I will get it. I
mainly need the med reminder. I usually don’t remember. I
am kind of still a bit scared. I usually am with change. I am
sure I will enjoy the Nurse. Last night I made supper. Yummy.
They start Monday. I accepted I am sick. We will get sicker.
That should not change how we view life. Life is great. Our
future is great. Everything can only get up from here. We can
have real hope know. Real cures. Real breakthroughs. I
believe. There is too much hope for us. Let’s learn to love our
life, ourselves again. Believe in our future. We can get there
easy. It is not far. We can hold on. We can make it in time. We
can learn to live again. A hundred percent healthy. Right now
we have to deal with HD. Until the cure comes. Hold on. We
don’t have long until we are cured. Fight HD with everything you have. It will be worth it. We can be there. We can live.

Thursday, May 1, 2008

Home Support

Tomorrow we get everything sorted out with home support.
On Monday it starts. Today I am really sick. I am so sick. Last
night there was twitching in my leg for a long time. I have bad
chorea. I love spring. I was taking Lucky for a walk. There was
a little kitty in the road. A huge truck was coming. I ran and
saved that cats life. He might have gone and got ran over.
Poor kitty. I chase him off the road. We need to take
everything with passion for life. Passion to fight. Just not
live. Love your life. Live your life. This is all we have. We need
to have unwavering hope for the future. We will get there. We
can live again a hundred percent. Motivate yourself to
greatness in your eyes. We can do anything we want to. I
never let HD get in the way. Fight HD. Loosen its grip on you.
Loosen it. Breathe again. Live again. Just breathe. Your life is
in your hands. Do what you wish. Live your life now. You have
it back.


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