Home Care

I am so, so sick today. This has been the worst HD day I have
had in a while. I am so sick. I have really bad chorea. I almost
feel a couple of times. I had a hard time dressing today too. I
am going to have a home support. I have an assesment this
week. I am slowly getting sick enough to need one. I feel the
good days are over. It does not matter. I have to accept the
change; it was bound to happen anyway. My Dad will pay for
that. I dropped down to 103 pounds. I lost 45 pounds in the
last year. Not good. When I went to the hospital. They gave
me ensure 3 times a day. It worked. When I got home Trevor
could tell. I don’t look deathly skinny. Today is Jenny’s
funeral. May she rest in peace, forever in our memory? I will
never forget the impact she had on my life. I can never ever
forget her. We will always love you Jenny. I took my Zyprexa
last night. I hope it works better. I am so sedated on it. I will
tought it out to have normalcy. I updated My Story and HD
Info Page.Trevor is going to study for his Certs. That is the
test that will give him his degree, Network Analyst.

Cranbrook Psyche Ward

am sorry I was not able to blog for days. Not only have we had
Jenny to deal with. I emailed every media outlet and they are
leaving us alone. People are walking up to Scotto and emailing my
brother and saying sorry. He has no idea who they are. He has
watched the reports too. He said Jenny died quickly and was
painless. Every 15 minutes on the radio. Poor Scotto. He is 20. He
loses someone every year. He is torn up about going to Rimbey for
another funeral. Last one was poor Dylan Stoner. He was Scotto’s
best friend. We had the same friends. I had known him since grade
2. He got into a horrible drunk driving accident. He was she same
age. He has also lost 5 of his school friends. After I heard, I stayed
up all night trying to get rid of the reporters. I was sent to the
Cranbrook Psyche Ward. My Seriqouil was giving me horrendous
hallucinations. It was also making me angry. Dr. Trew said that the
anger was a side effect of the serqoiul. They upped it. It would work
for a bit and then it would get worse. They put me back on Zyrpexa.
They upped it. I got realised today. I am glad I went. I hurt for all for
these people with horrible mental illnesses. I gave them hope and
a reason to live. It hurt me to see people struggle in life. I have to
help people. It does not matter who. While working on myself too. It
is part of healing me. These people have had a hard life. Alcoholics,
drug addicts. My roommate was clean for a month. That is such
good news. She can begin her life again. When today I left
everyone had tears in their eyes. I told them to set goals and
achieve dreams. I told them their lives mean something. I also told
one of the guys there that his life meant something. Never hurt
yourself again. I met every member of his family. They would miss
him so much. They all needed help. I was blessed to be there with
such a group of very nice people. Mentally ill are people too. I don’t
think people sometimes don’t think that. I love them all. Who have
such problems they can’t help. They saw a kid in there. Were
surprised at the wisdom that can come out of 25 year old. That is
the sad part. They left the door open when I had to sleep. I was
scared and had hallucinations. The sad thing is I can’t go to Jenny’s
funeral. I talked to my Aunt and she said Jenny would want me to
get better. I am working on a memorial page. I want to get my
cousin on here. You can all know how amazing she was. I am so
glad to have known her. I also wrote a poem for her. I am going to
get home support now. It is what my family wants. It won’t stop me
from coming here and working on saving people from the cold
reality we face. Everyone get in the warm world that we live in. It will
always be this way. We have to know to come here. I would never
take that away. I swear I will be on my “Death Bed” and still
blogging. It would never be like that. We are all going to live. I just
wish I could say the same for our Jenny. I was in the hospital and I
told people where I was from. They told me do you know about that
bus crash. There was one woman who went through almost the
same circumstances. Her poor son in law was murdered in
Edmonton. It is a cold case. She told about how hard it is for people to deal with that. It is so having to hear it all over the place.

Jenny

I received terrible, terrible news today. My 18 year old cousin
Jenny died today. She was involved in a school bus accident
in Rimbey. My home town. A gravel truck hit the school bus.
There were 14 kids on there. My cousin and another 2 other
kids were killed. That is the same bus all of my family rode
every school day. This kills me. She was 2 months away from
graduating. She was sadly an only child. That is what kills
me. My poor Aunt Donna and my Uncle Jim. The worst part of
this is the media won’t leave my family alone. There are
getting tons of calls from horrible mean reporters, wanting
the story. My Dad got tons too. Every single member of my
family. My Uncle Jim and Donna had to leave there own house
because of all the reporters. This is hard. It happened this
morning on the way to school. I just wish everyone would
leave my family alone and let them grieve. The funeral is on
Tuesday. I am going back home, on Saturday. This is so sad. I
want all of them to leave my family alone and let us grieve. I
used to babysit Jenny all of the time. She was a bright spot in
our family. We will all miss her. Very, very smart sweet girl.
Had her future ahead of her. All of those poor kids did. Today I
won the mother load of awards. I feel so bad having
something really good for me and have to feel so sad. What
is worse I was flipping through the channels and I saw the
bus she was on. It was ripped in half. I wish I am the only one
in my family that that will haunt.I am going to dedicate the
highest awards I won in my cousin’s memory. This is your
award now Jenny. All yours. I won the talking Hands
Compassionate Award in your honor. It is the oldest kind of
its award. It has been around since 1986. They had me go
through 3 different processes; the first was if they liked my
site. The next one was a laudation for someone else who
knew me. Trevor helped me. The next was 3 glowing
laudations from 3 people I did not know. It took three
months. I actually never thought would win this. There is no
higher award in the world. This is what I leave you Jenny. Also
all of the other victims on that bus. My heart bleeds for them. This is what they have to say about me.

---

What a mind-blowing illness Huntington's Disease is and to
visit this web site leaves one grateful for the minor ills one
may have in comparison to Huntington's.

---

A brilliant resource provided by the author who has ''been
there and done that" thus providing validity to the content
provided. For those among us who live with Huntington's
Disease this site is a must read where one will find
information on myths and misconceptions, the importance
of genetic testing, treatment methods, hope for the future
and more. And even if one lacks interest in the items
mentioned, any person just diagnosed will find that they are
not alone - that there are people who do understand.
This user friendly web site provides a fantastic resource for
Educators, Students and families alike enabling all who visit
to gain deeper insights into this terrible illness.
Forever in Jenny’s memory. This is my tribute to you. The
biggest award for the most wonderful teenage ever. Who
lost her life way too soon. We will never forget your short contribution to our family.

Another new possible cure

This a promising new study. What do I have to say. This is our year.
This is our life. These are our possible cures. Don't ever stop
believing. It will come. We are waiting.

http://www.umassmed.edu/bmp/faculty/zamore.cfm?start=0&&

Back Here

I am back here. The other server caused problems with my main
page. It got deleted. They wanted me to pay an obscene amount of
money to get it back. I should have never left here. I had to make
this main page over. Angel fire is good. I love you again angel fire.
Yesterday when I saw my index was gone. I was so upset. All of that
hard work gone. I was in tears. Trevor told me I could make a better
one. I had a bad HD day. I could not dress. Bumping into everything.
I have bruises all over. I fell out of my chair last night. I spill
everything again. I was very confused. I had hallucinated too. I
always hear things outside of my apartment. Go out and check and
there is nobody there. Yesterday I saw someone out there. It was
scary blurry person. We got a hold of my Dr. Trew from Calgary.
Because of anger, they are added 50 extra of my Seriquil. That
would be 250. If it does not work, there are other meds I can try.I
have to fight HD the best I can. With a smile on my face. With hope.
We need to survive. Just survive HD. We will get to a point where we
can be cured. We will have our life back into our hands. That life
you never thought you would get back. We will have everything
back. Just keep on living. Keep on fighting. It is worth it to just
smile. Just love ourselves. You deserve a life worth living. Just make
it yourself. Make something you can be proud of. Something to
keep us going. Every second is a struggle to fight HD. It is always worth it in the end

Home Care

I am slowly figuring out things on here. Trevor is burnt and will have
to go to respite retreats. I am going to miss him so much. He will
take off for a week. We have never spent a day apart. This will be
hard. They want me to get some home support here. I am not ready. I
am petrified. I don’t feel I am that sick. I am still having healthy
days. This has been a hard day for me. A lot of changes happening
in one day. When Trevor goes I will go with his Mom. It is hard to
find the hope on days like these. This is where it counts the most.
When we have to make changes rapidly. This illness takes us. It
can never take our souls. Our fight. Our strength. It can never take
that, you don’t give in. Don’t let it claim that fire. That fire is all that
saves us. We need the fire to fight. We need to accept these
changes. Move on with a positive leaning. I will be sick and be
cured. A long with all of you. We need to believe a hundred percent.
I am getting sicker. We are all getting there too. We are the ones
that can stop us from worrying about it. We have HD. WE are the
ones that can live our lives. We have control. Take it back. Take back your power.