Saturday, February 27, 2010
Thursday, February 25, 2010
Working With God
Polly, got fired, by the Gleaner's, for helping, the sick ones. Terry, Trevor's Dad, is getting an Editor, to look in the Gleaner's. It is against, their policy. When, Polly, got kicked out. We at a Gleaner's Christmas Party, I was in tears, I loved Polly and I also, knew something, will change. She got fired, for defending us. Because Polly, loved,me, she looked all over, for a place, suited, for me. It was one off Trevor's old Church. We do, give, meals for poor kids and My SO and disabled kids. Sometimes, we need, the food bank. And have, been getting Christmas donations. That, money, made us have, an actual Christmas We got 500 dollars from the HD Society. It, hurts me, kids going, through, this. They don't deserve this. They deserve better. Our God, love, are saving these kids. Everyone is super nice. They have a nice Church there. There is one of Worker's, has a family, that has HD here They said, that they accept all, disabled people. My first day and I have people, praying for me. In there, they hug and a a pray. Church. I love working with god. I love my friends.
Wednesday, February 24, 2010
Atlanta
We got the tickets. We, don't know, who will, my companion , Alice or, Trevor's Aunt, would go. We got some paperwork, to get done. We, did, not get, my Passport yet. Kim, is, giving me a tour. We going, too see SEA Animals there. I always, wanted, to swim, with a dolphin. I am so, excited, to go too Atlanta and speak.
Meds Too High
We, went to see Dr. Walker. He did a blood, test and it showed, that my meds were, to high. Lower, doses, mean alot less, chroea and twitching.
Working with God.
Polly, got fired, by the Gleaner's, for helping, the sick ones. Terry, Trevor's Dad, is getting an Edition, to look in Gleaner's. It is against, their policy. When, Polly, got kicked out. We at a Gleaner's, I was in tears, I loved Polly and I also, knew something, will change. She got fired, for defending us. Because Polly, loved,me, she looked all over, for a place, suited, for me. It was one off Trevor's old Church. We do, give, meals for poor kids and My SO and disabled kids. Sometimes, we need, the food bank. And have, been getting Christmas donations. That, money, made us have, an actual Christmas We got 500 dollars from the HD Society. It, hurts me, kids going, through, this. They desirve this. They deserve better. Us, with Gods, love are saving, this kids. Every is super nice. They have a nice Church there. There is one of Worker's, has a family, that has HD here They said, that they accept all, disabled people. My first day and I have people, praying for me. In there, they hug and a a praying Church. I love working with god. I love my friends.
Tuesday, February 23, 2010
Got my Air Fare Tickets
I can, speak. to that Atlanta Conference. I get to go, on a tour, see the Sea Animals.
Monkey hybrid stem cells develop cellular features of Huntington's disease
Huge Stem Cell Break through. This is, a cure. One of, the many ones, this and HART. We chose, the HART trial, most of the Stem Cells, aren"t. for us. Only HART, gets JHD's in their Trails. They, found Stem Cells, that work, for us. This is hope. It is amazing for you Adults. This is one, of the ,cures. Celebrate, with me. This great news. This can cure, us It gets closer and closer, every time.
Monday, February 22, 2010
Friday, February 19, 2010
Confusion at the Diettion's
I have been, confused, can't understand , our appointments, that we go too. I keyed, into the part, when I start, losing, tons of weight. He told me last night. Trevor told me, there was nothing they could, do too calm, my tummy. I was at healthy, weight and if I, slide, they would, do he gain weight strategy, that I posted earlier.
Thursday, February 18, 2010
Cure is here in 2012, Huntexil®, Hart drug
When, I first started, I told, you that cures are here. Celebrate with me. We can live now.This med cures all of HD, symptoms. I have, waited my, whole, life. The Generations, will, stop. They have a short, JHD trial and it, would be realised. We are, first on the list, to get tested. I have been, studying, this for, my Brother Gary. I still, wish I was, the only, one, wt HD, that is why I am looking. At the Vancouver World Conference, all they did, is talk, about, this drug. I heard stories, about this making someone, who has HD, given a new life with this, med. They, wanted, the drug out, soon as possible.
http://www.neurosearch.com/Default.aspx?ID=16&M=News&PID=12&NewsID=15886
Saw my Diettion
I have hard time swallowing. I am eating Carbs, to give weight. Every twitch, took allot of energy. I drink, a lot of smothees and Diary Queen. We make small meals. and cutting, it small. I will tell, if it works.
Wednesday, February 17, 2010
Tuesday, February 16, 2010
Going to see my OC and the Diettion
Tell you, everything, I know weigh 100lbs. This is stage two care.
Monday, February 15, 2010
I am entering stage 2./ Be Happy Like me
When I first had HD. I saw a hallucination, and stayed up crying. I told Trevor, that I knew, it was HD. It was. I started getting my mental symptoms, at 21. That, is when, I made, my Page. I had my DBT skills. I went, back, to Therapy, to learned, new HD skills. I have control of my Brain. That is, why I brought, them here. When I turned 23, me and 21 age, Brother, got HD, within a week, around Christmas. Trevor took it so bad, I calmed him down an Said Stem Cells. We want HART now. I warned my family, that I had it It was really, concerned, of my Dad. It, would, be divesting. Every stage, every thing I lose. I have no pain, with it. I asked, Home Support, to drees me. I ask and do not feel, like I am losing. we are going, to Phsyo, so Trevor, can us, Range of Motion. He is making sure, that, I can blog. My Dad Is getting me, Chorea Meds. My Chorea, so bad now. My blog is for you, help me to. Helping the needy ones. I figured out, how to go from NEG TO POS When, I was a teen, I got,sent to a self esteem class. They degraded, us and we got unlifted. When I went to DBT, my first day. They fought, my self esteem and self aware. When, you love your self and your accept your self . You can be positive, like me. Just keep, saying, I am worth it.
Waiting for Passport
In 4 weeks, I will get my Passport. We are 11 mins from the US Border. We are close, to Spokane. Trevor's Parents, go to Sandpoint, finally, I can go there. I am Praying to go, to the Conference. I can a give allot of hope there. I have to thank Trevor's, whole family. They put, a lot, of time and effort in this. When, we went to my picture, with Trevor's, Aunt Carolyn she told him, I was like, Michel .J Fox. It took, me ten times, to get good pics. He wrote, a note, about it, so they could take one, if it was not perfect. He loved, me going, too speak at an HD Conference. I get to Travel Disability, we would get scooted around, and first on the Plane. I am taking Alice and Aunt Carolyn. She has kids, in, New Hampshire and she wants, us, too meet them.
Getting to my Dad's.
I m getting transferred , Trevor to Cranbrook, Alice to Radium and Calgary. My Dad will pick, me up, at Calgary and take me home.
Sunday, February 14, 2010
Extending my HD Drive FEB 30
I gave flyer, to Paster Doug and expecting , Donations from Church. I want to give, them a week extra.
Friday, February 12, 2010
Wrongly let go from the Gleaner's
I, loved Polly, the former Exc. there. She, retired and said the, next woman was mean and hard. Whenever is called, or work, they never, gave me anything, to do. Today, Trevor, went in there and fought my job. Ihey called me a liability. Terry, noticed it three, weeks go. The good thing is I can go to Crsentatics. It is where, my SO friends are at. They go on trips and are in plays. They do allot, of fun things, there.
JHD Drive a Sucess in my Community
No one new about JHD, here. I put a JHD, kid on the flyer, so they can see how, it is like. I wanted, them to be shocked, to donate. It helped being a very sick, HD, herself, giving out flyer's. My Dad gave out flyer's, to Central Alberta. Trevor, helped,me, with my flyer's. My Dad, was behind, me the whole time. He thought, this was a good issue. He wanted, me too find help here. I am, the only person, here who has here. Now, there is a 11 kid with it. He is so sick. I think, people are, in denial and do not want to see us.We have still, until the 20th. All, the money goes, to the Adults, none for us kids.
Thursday, February 11, 2010
Coast Mental Health Courage to Come Back Award
This a major Award, from Canada. This Award comes from, Vancouver. It is a sick person, like me, who is proactive. We, take our disease, and do something about it. We change it and make it hopfull and not scary. No, matter, how sick, I get, I will, never fall and lead, back, to darkness. I will be on my death bead,l will be still bloggring. I can't handle, one person's pain. That's why I am Site Leader on WAREHD. Not only did I help HD, I also, did, Relay for Life. I can hardly walk, and I would never quit. Still going to walk. I am, the Canadian HD Spokesperson. They study, my story and my blog. They use for every function and support group, to cheer, people up. Then, there is me getting my JHD and my family Donations. Running, till the 20th. This is the first campaign, was geared for us.. I helped my American friends, get Stem Cells, Heath Care and also, the no Genetic discrimination, taken care of. Then, I am speaking about hope in Atlanta. Trevors Aunt, Nominated me. Ican't, look after myself, I think, I am getting into Stage 2. Donate for the kid's, who are dying, to young.
Wednesday, February 10, 2010
Going Home in 3 weeks
Trevor is going, to have, his first, Respite in 4 years. I kept telling, him to do it. Finely and he did it. I miss my family. We are thinking, to fly or take the bus. Either way, I will have a disability pass .Both will, help me and make it is easy, as it came be. I am excited. The future is so much fun. I get go home, Speak and Ride my horses. I going home, get to see my Grandpa and the horses on My Uncle's farm. They, are the ones, I ride when I was healthy. I will, still blog, every day, at my Dad's.
Tuesday, February 9, 2010
Monday, February 8, 2010
Going to speak at a Confrence
I am going to The Faith and Hope Society. We have the same mission.We can't afford conferences, because, we don't have the money. They are trying, to sponsor me. I saved Kim's life. She was, suicidal. A friend,, told her about, my blog and I saved her life. That is why, she wants, me to speak. I m going to take Alice with me. I will have, to register, with Airport, to be disabled. They will, give me fun wheelchair. The event is in Atlanta Georgia. The date is March 27.
Friday, February 5, 2010
Surprise! The Only Online JHD Funrdrasier's
I have,been working, on this for a month. Their is no campaign, to help, these kids. Just me. What can't anyone see, us dying here? There is more, money, raised, to the Adults. I am hitting the Creston Community, they see me here, sick and fundraising, it gives them, the idea how it is like. I am waiting for 2 donation Cans. To My Church and the Gleaner;'s. They have a 100 volunteer's that love me there. They are sick on how, they treat us. My whole family's, we now think, got sick at twenty. We all have, no life, no future. All of the life, goes to the Adults, 30 and above. I think, most of, them have JHD denial. They don't want, to see us suffering. Donate for us. Save us please.
Our Marriage
I never, thought, I would get married, so did my family. I just left, from an abusive situation. My two brothers and Dad, came to help. A year later, I was a new Waitress at Nelly's in Calgary, AB,. He was, the dishwasher, going to SAIT, to become a Network Analyst. The first date, got the feeling, that, Trevor would never, treat me abusively. I told him, I had HD, do some Reaserch and ask, your family, if they could handle, it. A week, later, he said yes. When, we moved, in, my family, did a check. They did, it different days and said nothing about it It was so funny. My family, we are Computer Genius's. My Dad, upgraded, for the OIL patch, taught us age 5,what to do. My Dad, was impressed, how much, Trevor knew about Computers. Gary approved too and Scotto. With in the first month, that we, wanted, to, spend our life together. Our love came quickly. 6 months, later, he did a Treasure hunt for me. I could, not get, those clues. He, tried hard to stump, his Genius Wife. At, my wedding, August 4. I had an alter for my Mom. We never fight and get along and love each other. A lot at brides, think the get, the Fairy Tall Romance. We have that and my family was supper happy about it. He actually is becoming a Nurse to help me. This Christmas I could not, eat or drink and he helped. My Grandpa, told him, that he appreciate's everything I do.
2CARE - Coenzyme Q10 in Huntington Disease
We need people, to join studies, like my frailly. We need, to get treatments. Join up, be brave. We need tons, of people, doing, the right, thing.
http://www.hdsa.org/research/clinical-trials/ongoing-clinical-trials/coq10.html
Thursday, February 4, 2010
Hurt
I went, to a Society and it was, hopeless, focused on no hope. All about death and no future. I read one page, I felt scared. Just one page, is all, it takes. That, reminds, me of my Mission. I wanted to create, something, people, could let go, of their feelings. I wanted, to make, something, that, you can, get hope from. For the, first time, you heard, about the cures and treatments. Everyone believes, in articles, that we don't have any Treatments or cures. I wrote, the first, ever positive article. HD Advocacy Center, saw something in me and want, to show, us, that, we need do not need. I got my Every Day Hero Award. It is because, I tried, to change, things and make it a happy, place to be. I made, sure, no one, well, hurt, again.
Wednesday, February 3, 2010
Psychically Able, to Ride Horces
I am psychically able, to ride Therapeutic Horses. I start, in April. I am so excited. I have been wanting this, for a while. It is my Birthday, present, from my Dad.
I gained 2 pounds!!
I now weigh. I gained two pounds, in 2 weeks. I added 2 boost a day, worked out harder.
Tuesday, February 2, 2010
Monday, February 1, 2010
Jake is sick
Our little stray cat, that we looked, after got Mange and ticks. He is contagious. We can't afford vet bills. We still, feed him outside.
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