Mood:  mischievious

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.

Mood:  mischievious

These are a Bunch of HD Pocasts.

http://www.patientpower.info/listenhealthtopicdetails.asp?showid=HR012308&To

Mood:  mischievious

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

Mood:  celebratory

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.

Mood:  surprised

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 4^th.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.

Mood:  lucky

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

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

Mood:  happy

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