This is a sponsor site. You can donate for her climb up the Mt. Kilimanjaro. You can also take the million dollar challenge to raise money for HD research. Let's make it happen.
Wednesday, December 31, 2008
Stem Cell Breakthrough for Huntington's Disease
A year old but a good article about stem cells and how they can help. Countdown for the cure.
My Second Annual New Year’s Address
This is the year where all of the generations stop. This the year that HD is eradicated. There are tons of ways to rid ourselves of the poison. This poison will not let us die anymore. This year there are more studies. More cures. Stem Cell research will get better in HD studies in California. It is all we wish for. All we hoped for will come true. It is our year. Take it back. Take back our future without HD. Take back our hope that HD will be no more. We will survive this year. We will survive every year. There is more hope every year. This is the one where it all changes for good. HD will end. It will be no more this year. Tons of research this year. It is working. Hope is here to stay this year. Pay attention to the signs. HD is no more this year. This is our year. Live it. Never think of HD. It is no more. Our year. Live the year and remember that we have hope this year.
Tuesday, December 30, 2008
Fun Christmas
Alice took us out for dinner. We are repairing our relationship. I think it is working. We are planning to go snowshoeing together.We can apply for disabled parking now. Everyone at home support is really sick this week. I hope they get better. They had to cancel. The one with more seniority out of Trevor’s job quit. Now he is the first they will call with work. They might need construction done. They tried to call and get him to work when we one holidays. My Aunt and Uncle, Jenny’s parents were broken without Jenny. It was not a Christmas without her. Those new adopted kids were so cute. How could someone not want one? They are twins. Their parents were addicted to cocaine. I took my little cousins sledding. We do that every Christmas. This year Gary joined us. He was way bigger than the sleigh. Scott had to work all Christmas. He did stop by to see me. It was quite funny. Had fun with my Step family. A good visit with my Mom’s Step Father. I keep trying to convince him there is hope. That side does the Amaryllis Lilies every year. Good visit with my Grandpa Noble. He lives on the farm. He first saw Lucky and did not know whether to let him in or shoot him. He thought he was a Porcupine. That is what we call him now. Trevor prayed to the spirits and found my Mom under the snow. I had so much fun. Went and visited friends in Calgary too.. We all tried our best. My hallucinations and paranoia are continuing. I keep seeing aliens. My dad left the light on, so I would not get scared at his place. I have been dancing. Today I was all tremors. I have been having problems eating. Very bad memory. I can’t hardly remember anything. I have been drooling. I have been throwing up my night meds. Trevor's Aunt Carolyn had an idea. She added maple syrup. It went down fine with that. They are so gross. I am having a hard time with my upset tummy. They good news is I am115lbs now. I am healthier there. We need to all accept the fact that we are getting sicker. It is here. HD is real. It will make us weak. It will never take us. It does not own our destiny. We own it. We can have our life back. We can fight it. We can get better. Do everything to slow it. I am still doing aerobics, yoga and Lucky walks. The Nurses’ and Trevor take me out. I can’t see the cars sometimes. Take my meds when I am supposed too. Take my boost every two days. Soon I will have COQ10 and Creatine. Keep up everything too. The fight is worth it. It will give you more life. More fight. The more you can do to fight is good. Fight every way you know how. You have the strength. Never lose sight of the fight. Every day is another struggle. Only we know it. We also know we can fight anything.
Another Award
I won my number 30 International Award. This is a Purple Moon Award. It is the one that gave me the badge. This one was hard to win. I dedicate these to every person that has HD, or in their family. These are yours too.
Monday, December 29, 2008
I am back
I stayed an extra day. It was snowing bad yesterday. We stayed in Calgary with Trevor’s Aunt. Half way home. Today on our drive there was a whiteout blizzard. There was a big accident that held us up. The way there was not bad. It was horrible way there. We saw at least nine accidents. We stopped by Doctors’ Suchorskys, we were there anyway. More promises that we will get called for our next appointment. They never do. We tried to book. They used that we don’t have the next year excuse again. It was freezing in Alberta. Minus 40 C. I was insanely sick. I have never been that sick before. Every night Trevor dressed me. My Dad gave me an electric tooth brush. It is easier. I also could not sleep there. That made it worse. I was falling. My tummy got upset too. I threw up my Christmas dinner. Gary was really sick. His chorea is bad. I still wish I was the only one to have it. I am happy. I had to tell my family that I had HD. I told them that there is hope for me and Gary. He gets really lonely. We have good news. Our cousin Ryan does not have HD. He has one kid. Scott is healthy and in school. We don’t think he will get it either. I had so much fun. My Dad gave me great advice. He told me too slow down and concentrate. It is working. I am settling on one task. They are using Nintendo WII's for rehab. The WII Fit. We are trying to get one. It works great for that. It was good to see my family. I always miss Alberta. Trevor’s job called he will be working again. I hope everyone had a good Christmas and Hanukah. Hope no one let HD ruin their holidays. It should never get in the way. Just live. Just love. Just accept HD. We live for the light of life. We live for the light of the future. We live for the light of hope. It is there. The light is bright.
Ryan is Negative
One of my cousins got negative result this Christmas. He has one kid and has another on the way. Scott is the only one who needs to get tested. I added this to my family history.
Friday, December 19, 2008
New Clinical Research Project
New Clinical Research Project Developing a way to measure some of the early symptoms of Huntington’s disease – symptoms that are barely visible to the outside world – is the focus of a revolutionary new project, and we need your help to make this research a success.The Ontario Cancer Biomarker Network (OCBN), located in the MaRS centre in the heart of Toronto’s biomedical research community, will be working with volunteers to develop “measuring sticks” to be used to create new and much more precise rating scales for people who have inherited the gene but do not have overt symptoms of Huntington’s disease. This project is funded by Cure Huntington’s Disease Initiative (CHDI) and is being conducted in partnership with the Huntington Society of Canada (HSC). An important part of this landmark project will get underway in early January.People from Toronto and the surrounding area are needed to volunteer for the Functional Rating Scale Taskforce for pre-Huntington’s Disease, or FuRST-pHD project. HSC’s Toronto chapter will host an information session on Jan. 6, 2009 in North York with neurologist Dr. Mark Guttman, a member of the FuRST-pHD core group, who will share news on this and other projects impacting the Huntington’s community.OCBN will develop the new rating scales, said Dr. Guttman, with the purpose of creating something that can measure pre-HD symptoms objectively. The scales will be an invaluable tool in drug development since they will allow researchers to measure a drug’s effectiveness on a functional level, whether the response is an improved thinking process, less irritability and depression, or fewer outbursts. Organizations like the FDA and Health Canada don’t want to see results of blood tests; they want concrete evidence that a trial drug has a meaningful outcome for the patient, Dr. Guttman explained. That’s why a rating scale that shows very precise and specific changes in areas like behaviour or cognition in response to a certain drug will be instrumental in the clinical trials process.The objective is to bring drugs to market that will slow or stop the progression of HD, working towards the “holy grail” – a drug that will prevent the development of any HD symptoms. HD is a tri-symptomatic disease, affecting movement, behaviour and cognition. The disease is often not diagnosed until the motor manifestations start to occur, but studies are showing that by the time chorea is evident, other manifestations of the disease are already well underway. The early, subtle signs will become the focus of the rating scales, which can be used to measure changes related to HD at a much earlier stage.The functional rating scales are expected to become very important pieces of the drug trial process. They’ll provide a way to measure responses to certain drugs, determining whether symptoms are improving or worsening. Because cognitive deterioration may occur long before physical symptoms show up, it’s important to find drugs that will delay the symptoms, pushing back changes in the brain as early as possible.Volunteers are needed for two components of the project. Focus groups will be formed to obtain information about early symptoms and the impact on people’s lives. There will be three separate groups of 10 individuals – one group will have tested positively for the HD gene but are pre-symptomatic, the second group will be in the early stages of HD and the third group will be comprised of caregivers. Part of the process will require caregivers to describe some of the small, hard-to-detect symptoms that they see in the person with HD. It could be something as simple as a ringing phone causing panic in the person with HD, indicating a disconnect between the phone ringing and what the automatic response would normally be. This behaviour would be representative of cognitive deterioration. Someone who is suddenly unable to get on a bus would be showing another measurable form of deterioration. The focus group will help to set the direction of the project.Volunteers who have positive DNA tests and are not yet diagnosed with HD are also needed to pilot test the functional rating scales developed as part of the FuRST-pHD project. Participants will be asked to visit Dr. Guttman’s office in Markham to have the ratings scales administered to them. The FuRST-pHD team will have rapid feedback on the validity of the scales and further refine the “measuring sticks” as part of a reiterative process. Dr. Guttman said that it would be wonderful if there could be a pool of 100 or more participants for these preliminary testing procedures. Those participants may be called upon a few times throughout the year as the rating scales are developed. “This is the groundbreaking part of developing a cure for HD,” Dr. Guttman said. “It’s a Canadian thing. OCBN is (in Canada), HSC is supporting it; in my group, we’re trying to be one of the main players in this. Hopefully there’s some Canadian pride that we can share. We can do this in the U.S. or Australia, but it makes sense to do it in Toronto.”The information evening is open to anyone impacted by HD, even those who may not qualify for the FuRST-pHD project. Dr. Guttman will be talking about several other research projects that are also in need of volunteers, including a large international study funded by the National Institutes of Health called PREDICT HD. Participants who have had DNA testing should be willing to undergo annual testing, including cognitive and physical assessments, an MRI and questionnaires over the next five years. The January information session will also feature updates on clinical trials by the Huntington Study Group, including new medications to treat moderate symptomatic HD that would help balance and movement. The Cooperative Huntington’s Observational Research Trial (COHORT) is another project that is still recruiting volunteers who have developed HD, have inherited the HD gene or may be at risk because a family member is affected by the disease.CHDI is currently spending $100 million annually in HD research, Dr. Guttman said. “It would be absolutely spectacular to have drugs to slow or stop Huntington’s disease.” Huntington’s research is moving along at a faster pace than ever before, and projects like FuRST-pHD could have a major impact on those who have inherited the HD gene but are pre-symptomatic. CHDI expects to have drugs in the next one to two years ready for the testing stage, Dr. Guttman said, and that’s why it’s so important to have volunteers willing to get involved. Today’s participants will have a major impact on the future of HD.“This is an extraordinarily important project for the whole Huntington’s community,” Jo Anne explained. “It is going to set definitions for early diagnosis which will help find appropriate medications, treatments, and therapies sooner.”The development of a functional rating scale is only the beginning. Anyone interested in taking part, whether now or in the future, can be added to a list of potential participants.
To learn more about the Jan. 6 information session or the FuRST-pHD project,
contact the HSC Toronto chapter at info@hdtoronto.org or in Greater Toronto Area,
call Tim at (647) 238-6294.
Or call the HSC National Office toll-free at 1-800-998-7398.
Merry Christmas
Last night I was so scared. I was up all night. Trying to watch TV and settle down. I just got more and more scared. It is back. My halluncations and my paranoia. I went without them for months and then they come back. I think it has been 3 months. I find these afternoon Epivals good. Sometimes I will get upset in the afternoon. When I take them it is over. Taking it is good. I am glad I not allergic to it. No more Special Olympics until next year. Tomorrow we are leaving at 6:00 in the morning. I won’t be doing this or WEAREHD.ORG. I will be getting emails at my Dad’s, if anyone wants anything. I run into people there that inspire me to write blogs to help them and help you. This will be the first Christmas without our Jenny. I am not sure of how that would work out. Everyone believe. Simply believe in the truth. Believe in what you know now. We have a future now. A reason to live now. A future right now. HD will not taint us anymore. We have hope now. Hope for the first time. Hope for the only time. Remember when I am gone, to live. To celebrate HD and our family. Do not hate yourself. Don’t not hate your family. Love yourself. Love HD. Accept HD and your family. That is what life is for. Enjoy it.
Thursday, December 18, 2008
Going Home Early
The past couple of days I have been feeling a bit sicker. Brain fog. I have been tripping. I have been dropping and spilling a lot too. Yesterday I saw aliens and flashes. It was so scary. I had to hold on to Trevor. Yesterday I made a great dessert. It came out perfect. I also made a wreath for the dinner. I still can bake. Trevor and his Mom did most of the cooking. We invited John again. He was the guy we invited for Thanksgiving. He has no where else to go. Alice got me a Special Olympics towel. It sad proud to be Special. That is awesome. It made me so happy. She went to check me out when I did Rythmitic Gymnastics. Our home support hooked us up great this Christmas. They gave us 5 huge boxes of food. They all pitched and got us some. They are so amazing. I love them all. We are going home on Saturday. There is a blizzard on Sunday. I hope everyone is having a good holiday. I will be gone for 8 days. Back on the 28th. Live for today and tomorrow. Live for the future. Live for the cure. Live for the now. It all goes by so fast. Slow down, enjoy it. Life is all we have. Life and love this holiday season. Enjoy the time. You have to make our impression on the world. Let your love flow for your family and your life. Don’t let HD ruin everything. You have the power to do that. Do something for your fellow man. HD should not ruin that. Don’t let it take form your Christmas.
Wednesday, December 17, 2008
Architectural gems Of Toronto Walk For HD
Architectural gems Of Toronto Walk For HD
University of Toronto
Sun, May3, 2009
1:00pm-4:00pm
HD Natonal Toronto Confrence
Dr. Mark Guttman
Timothy Eaton Memorial Church
Tues, Jan 6,2009
7pm, doors open at 6:30
Casino Royale 2009
Casino Royale 2009
Feb 21 2009
Place your bets and ante up...we hope to deal you in!
When: Saturday, February 21, 2009, 7pm
Feb 21 2009
Place your bets and ante up...we hope to deal you in!
When: Saturday, February 21, 2009, 7pm
Liberty Grand25 British Columbia RdToronto, ON
Tickets $125
Poker * Roulette * Blackjack * Craps * Play Money
Tickets $125
Poker * Roulette * Blackjack * Craps * Play Money
For any inquiries please contact:casinoroyale@huntingtonsociety.ca
1-800-998-7398
Run to Finish Huntington disease and Walk to Cure
Run to Finish Huntington disease and Walk to Cure
6/14/2009
8:30AM
Sunnybrook Park, Toronto, ON
5k fun run and 1k/5k walk When: Sunday, June 14th, 2009. Where: Sunnybrook Park, Toronto (near Leslie Street and Eglinton Avenue East, not far from DVP/404 and 401 highways)Schedule: 8:30-9:30am arrival 9:50 opening ceremonies and warm-up 10:00 5k run start 10:05 1k and 5k walk start 11:30 announcements and prize draw Join us for a walk in the park or a fun run. Many volunteer opportunities.
Contact: Tim Irwin 647-238-6294
events@hdtoronto.org
Tuesday, December 16, 2008
Countdown For The Cure
I am counting down the sleeps until I get to go home. We have to prepare for Gary. Every time he gets sicker. It is so noticeable with him. With me it is not. I found out early. That way I could do everything I could to slow it down. That is one of the advantages. It gave me two years. My Dad moved to freezing Leduc. We will have Christmas dinner with Karen’s family. I did amazing bowling. I got into the 90’s. I got some spares. My amazing boss at the Gleaner’s will give Trevor a job shoveling snow. He will get 17 dollars a month. Our home support office got the best home support office in BC award. They are so good. We love them all. They are all amazing. Trying to do everything they can for and some. All of Nurses are super good. I am making the dessert of our Christmas dinner we are hosting. I do it every year. This year it will be hot peanut fudge. It sounds so good. Today we got our Ministerial Association Christmas Hamper. They were done by the Gleaners. I cleaned some of the toys in those baskets. It all came for a huge Gleaner’s drive to get toys and food for them. They did not think I was and adult when I showed up. I was glad one of the people I volunteer was there. They gave us stuff we can use for our Turkey dinner. I keep telling Gary about the cures and research. We have to do it ourselves since our Neurologist is no good. Stem cells or Dimebon. I am not sure what one would be the best. One of my Nurses was watching a show on Stem Cells and thought of me. The cures are real. They are here. Hope is here. Countdown for the cure. The generations stop now. The future is now.
Monday, December 15, 2008
Blog Vote For Wellsphere Award
The same company that gave me the Everyday Hero award is having a blog contest. People vote and then the award is given out.
Merry Christmas
I am still HD free. One Saturday our Special Olympics Christmas Party was cancelled. It was freezing. Most of them were walking. We are excited for March his year. Disability and supplements. We get a huge disability tax return. With all of that money, I am finally going to see the coast. Vancouver, The Queen Charlotte Islands and Kelowna. I want to see SeaWorld too. I never have been to the Ocean. Next we want to go to Cuba. I want to see lots of animals. Queen Charlotte Islands has the most animals there. We got more good news. We aren’t going to buy a condo here. We are renting one that the government looks at to see how much we can afford. It is a nice disabled friendly place. They allow pets there. This is two bedroom. Usually there is a long list. We are getting in March. We are the first couple and they have a two bedrooms. They have huge baths and showers. You can fit wheel chairs into them. They have bars. Everything is wheelchair accessible. They have a washer and dryer and everything we need. We have been looking at anything that we could make accessible. Right next door is a dog park. We are so exited. This will be a good year. Get excited for life. Forget about HD and enjoy life for simply what it is. Sunday I am going home. I am coming back on the 28th. We are making a Christmas dinner on Wednesday. We are having Trevor’s parents over. Celebrate your life. Hope you are all having a Merry Christmas.
Sunday, December 14, 2008
The Mediterranean Diet and HD
The Mediterranean diet, based on the dietary habits of the people of Crete, has become more popular to scientists and consumers, as studies continue to reveal its health benefits. For instance, studies show that the diet increases longevity and decreases the risk of Alzheimer’s disease. These promising results would suggest that studies investigating how the Mediterranean diet affects HD patients would be of interest the HD community. This chapter first discusses the history of the Mediterranean diet, what the diet consists of, and then explains in more detail the results of the diet’s studies.
HD SPA DAY
The Chapter’s business number is 989-832-4170,Grand Rapids,Michigan
The fundraiser is a HD SPA day. We offer SPA services for a cheap price and all the proceeds go to HDSA.
The fundraiser is a HD SPA day. We offer SPA services for a cheap price and all the proceeds go to HDSA.
FEB 7th and 8th.
E-Mail: hdsami@att.net
and the web site
address is www.hdsa-mi.com
address is www.hdsa-mi.com
Saturday, December 13, 2008
Sacramento Celebration of Hope Dinner Date
Thursday, February 28, 2008
Place: Hyatt Regency Sacramento
Time: 6pm to 9:30pm
Cocktails and Silent Auction : 6pm
Dinner and Program: 7:15pmTickets: $125
Table of 10: $1,250
Sponsorship Opportunities Available.
Friday, December 12, 2008
Big Fire/Good Luck
We got the WEAREHD.org instant messenger to work now. Try it out. I was chatting last night. I have had another HD free day. I am having trouble dressing sometimes. At night it is hard for me to get into my pajamas. Yesterday there was a bad fire 4 blocks away from here. One of our power lines got fried and we lost power for hours. It hit a pet store. Those poor animals. It was close to a gas station. We are lucky it did not hit the station. Today something amazing. Someone sent us a card saying that they are someone that loves us and has a job now and Trevor does not. They gave us 150 dollars worth of grocery cards and 150 dollars of cash. We have no idea who gave it to us. We are so touched. This is really amazing. It was like the HD Christmas gift we got three years ago. We were found to be the family most deserving, we had no money for Christmas. Loretta my amazing social worker hooked us up with that. I can’t wait until my disability kicks in. Today we are going around to look at Christmas lights. We are going to drive around and see them. We have snow now. I am happy. I wanted a white Christmas. Get out and enjoy the holidays. Enjoy the season. This is the season for family. Spend it with them. Enjoy it. This the time for spending time with others. Enjoy it. I am enjoying my time too. I am so excited to go home.
Thursday, December 11, 2008
More Updates
I changed the Research page to include that I am going on the C0Q10 and Creatine in March.
Countdown for the Cure
Trevor and I take a walk every night looking at Christmas lights. I love Chritmas.I am still healthy and feeling HD free. I am just dancing. Trevor said he saw my face twitching today though. I did not feel the twitches. I went to the Gleaner’s. I volunteered there. It was fun. I love it there. It is so fun. Everyone is super nice. I went and did Rythmitic Gymnastics. We got our routine down pact There was just three of us there. We did rope and hoop today. I did Double Dutch for everyone. I used to do it in school. I do it afterward for entertainment. They asked Trevor to volunteer at the Special Olympics. All of the Special people love Trevor. They miss him when works and can’t come. They want to start up more events and they need the volunteers. We have a Special Olympics Christmas Party on Saturday. All of us will be there. Everyone is excited. We are going to get cured soon. Don’t see HD as a death sentence. It is a sentence of hope. There is so much hope now. Tons of research. No reason to fear death anymore. We aren’t going to die. We are going to live. Countdown for the cure. Countdown for hope. Countdown for a future HD free. That would be so sweet. That is reality. The generations will stop. It won’t take long. We will be there soon. Count the days. I believe the Dimebon has tons of promise. I am excited for it. Stem cells too. Tons of research being done.
Researchers: Study results should be given to participants
This a good article about why we need to be told of our results form our clinical tests.
Wednesday, December 10, 2008
Excited to go home
I have still been healthy. No problems with anything. Though I did fall down the stairs today. We were at the Landlords so Trevor could fix the computer. I fell down their stairs. I am bit bruised but okay. We have got our little Lucky some dog friends now. He loves these two Shiztous. We walk with a friend at night who has two little dogs. They love each other now. Trevor and I realized today that we have money for Christmas gifts. We did not think we had any since he got laid off. My dad will help out of we need it. He is a last resort. We can apply for hardship status. The government will cover our rent. He applied for EI. That means he can get his Care Aide Certificate for free. That is exciting. The great part of this. Be excited for life. I am so excited to see my family. I will leave on the 21st and come back on the 28th. Excited. I sometimes get homesick and miss Alberta. Get excited and live life. Get excited for the holiday. Tis the season to have fun. Don’t let HD get in the way. Live your life. Love your time here on the planet. You are the one that makes it livable. You are the one that can make your life enjoyable. Enjoy the winter. Get out and live. Have fun this Christmas. Enjoy the joy and comfort of your family.
HD Celebrity
For more years then I care to remember, HD families have been wishing or praying for a 'famous personality' to help us get attention for Huntington's Disease. In February 2007, with his speech at the CHDI Research Conference, Charles Sabin let the world know [before his own family knew] that he, himself, had been diagnosed with HD. Once his secret was out of the 'closet', it appears that Mr. Sabin has personally set out to gain world recognition for Huntington's Disease. From the below video's and articles, and with his background as an Emmy-award winning and highly respected NBC news correspondent, you'll see that Mr. Sabin has been speaking out eloquently and powerfully to help create awareness on Huntington's Disease since his initial speech in 2007. Mr. Sabin is also scheduled to be one of keynote speakers at the 2009 World Congress on Huntington's Disease 12th - 15th September 2009 in Vancouver, British Columbia, Canada.
Tuesday, December 9, 2008
Medivation Presents New Data on Dimebon's Novel Mechanism of Action
Medivation, Inc. (Nasdaq: MDVN) presented new data that provide additional evidence that Dimebon, its lead product candidate in development to treat Alzheimer's and Huntington's diseases, potentially operates via a novel mitochondrial mechanism of action. In preclinical studies, Dimebon was shown to impact two key aspects of brain cell function: it promoted neurite outgrowth and it preserved mitochondrial function after brain cells were challenged with beta amyloid, a toxic substance often associated with Alzheimer's disease and the loss of brain cells. I am excited. Countdown for the cure will soon end.
Cutting Drug Costs: 11 Dos and Don'ts
Tips on How to Cut Health Care Costs Without Compromising Your Health
Great News
A part of my disability will cover all of my supplements. I have not been on any because we can't afford them. In March I can start C0Q10 and taking Creatine.
Novel Histone Demethylase Protein Complex Discovered
The Stowers Institute's Workman Lab has discovered a novel histone demethylase protein complex characterized in work published today in Molecular Cell.
Another Study
New Research Project-The Huntington Society of Canada is working with the Ontario Cancer Biomarker Network and Dr. Mark Guttman to conduct research on the development of a Functional Rating Scale for Individuals with Pre-Huntington Disease. This will research will help with assisting physicians to diagnosis and treat HD EARLIER than ever before, as well aid in targeting clinical trials. Early in 2009, we will be conducting separate focus groups for individuals living in the Toronto area who are pre-Huntington disease, early Huntington Disease and caregivers. The purpose of these groups will be to openly discuss which signs and symptoms of HD are worrisome, bothersome or interfere with daily activities. Dates for these groups will be announced early in January 2009. If you are interested in participating in these groups please contact Jo Anne Watton at 1-800-998-7398, ext 32.
Worry Free
We are feeling less worried now. Trevor will be working for his Mom and his Dad. He also will do work for our landlord. Today we are going back to the mill, to find out when he works. He also is on call for pine, his old company. He has a couple of computers to fix too. He does that on the side. I get to bowl later. I am excited being it I could not make last week. Don’t let worries take you away. When I do my chorea dance Trevor does it too. It is funny. We make a joke out of it. Don’t let life take you away. Celebrate. Live your life. Whatever won’t break you will make you stronger. You can get stronger. We can be stronger. Learn to live through the hard times. These are the times that make us. These are the times that breaks us. We can survive. We can win. We can have hope that everything will be okay. Fight for your life. We have hard times. We all can make it through them. We can fight them. Fight to make your life what it is. Don’t things hold you back. Fight for your life. It does not matter what odds are against us, we must fight and show our strength.
Monday, December 8, 2008
Trevor is Laid Off
My allergies are back. We think it is laundry soap I am allergic too. Yesterday night we got some bad news. We aren’t going to get disability until March now. Trevor got laid off. Laid off at Christmas time off all times. His job is doing construction and will need him again in mid January. They might need everyone sooner. This has affected everything. Don’t know if we can go home. Don’t know if we can make rent. Don’t know if we can afford our vehicle. Trevor has applied for EI, but it will take 6 weeks to get here. Our head Nurse hooked up Trevor a temporary job at the mill. It pays more then he made before. The good thing about going on EI is the Government will cover a college or University course. Trevor could get his Care Aide Certificate for free! We are excited about that. They would completely cover it. We have to learn to try and cope and fight anything set in our path. Make it right. If life gives you lemons make lemonade. That is true. If something bad happens you have to make the best out of it. This is all we can do. Make the best. Live the best. Deal with the worst. Deal with it with hope for something better. Fight for your happiness. Fight for you right to deal. The way you deal is everything. How do you deal? Do you hide? Do you face it?
Saturday, December 6, 2008
Another Award Badge
I got a Purple Moon Award Badge. It is an international award I am nominated for.
Friday, December 5, 2008
Vancouver Neurologist
The top HD Neurologist and researcher, he found the gene. They found the first cure there too. He might be my new Neurologist. I have chosen him. It is ten hours away. It will be worth it. They do every study there. Hoping we have luck getting in. We talked to the HD BC society. The Lady who runs the Kelowna office will help us get a hold of him. Her husband sees him too. She agreed with me that we will be cured. She knows there is lots of research out there to cure us. There is hope now. The Christmas Parade was so much fun. We sadly ran out toys early. I had the last toy and there was twenty kids there and I had to give them one. Sad for me. I had reindeer horns on and red outfit. My horns lit up. I will do it next year too. This a big parade, The Santa Claus Parades are always big. They show it on BC TV.Cute as an Elf. People took pictures. Trevor's Dad came to watch. Also our great landlords who have HD in their family. I might be able to nab a picture of me. Live your dreams. Don't let HD stop you
Christmas Miracle
Today I am going to be an Elf in the Santa Claus Parade. The Gleaners gives out toys to the kids there. I am going to give them to those kids. I am excited for that. Today was our Christmas miracle. We are all in shock here. It is something we never thought we would get. We fought two years for it. We been through advocates. Finally our amazing Nurse Julie Gyles. She did not have to do it. She became our advocate. Finally we are covered. We have disability now. Every month we get $334.62. Can’t believe it. We waited so long. We finally got it. All of my medical will be covered too. Also my prescriptions. Don’t ever give up either. Fight for your money. Fight for your share. We are sick. We need money. It is all long fight but we can get our money. When Trevor and I got married they told us that we would never get anything. You can fight and win. We finally did. It has been a great day today. Finding out that we finally get money. No more food bank. It is great. Fight for what you deserve too. We get in on December 17th.
Thursday, December 4, 2008
Save Yourself
There is no Special Olympics today. Heather the instructor has a Doctor’s appointment. Every day I volunteer run into my Special friends. They work next door. This town has jobs or people with disabilities. I went to the Gleaner’s. One of the Mangers did not show up. I was the only one working in toys. I could not do it by myself. I just cleaned them and left early. We left all the toys for tomorrow. There are two of them working tomorrow. I am volunteering to help them. I know how many toys were there. It was insane. The Manager did not call in, otherwise they could of gotten someone else. I am still HD free again. I love the Gleaners and the people there. They are doing everything to accomidate my HD. Some days are harder. They know that and help me more those days. I never go up the stairs. The Gleaners are having a Christmas dinner next Sunday at 6:00. We are also going to have a Chinese gift exchange. Trevor and I are both going. The Gleaner's just purchased a new building. There is little room for everything to fit in this one. We are constantly running into one another. The food bank needs more room too. We made so much on the Christmas sale. More then last year. It goes to the food bank. Don’t be scared of HD. Don’t fear anymore. No need too. HD is not a death sentence. Don’t listen to anyone that tells you different. We have hope now. You have hope now too. Get the hope you need. Now you know that everything is going to be alright. No more people have to hurt themselves. No one needs to think that. Now you know hope is credible. I am not giving false hope here I am still being accused of that. The cures are real. The treatments are real. The stem cells are real. If I have saved one life I have done my job.
Wednesday, December 3, 2008
Changed Added A Link
I got rid of HD trials. The emails that they promised never come out, I have heard. Also I have never got my emails either. I have found Clinical Trails government site. It finds clinical trails of any illness around the world. It is where I find my studies. It will do you more good then that HD trial one.
Deranged Calcium Signaling' Contributes To Neurological Disorder
A huge breakthrough on how Calcium effects us.
Creatine Trial
Come join the Creatine Trail. We need to do anything we can to find out what treats it. I hope my Neurologist will let Gary and I join it. Who knows. They don't call us.
Family update
Today my cold is mostly gone. I have had another HD free week. Not a single symptom, except for dancing. I move back and forth in one spot. It is fun for me. Laugh and it can’t penetrate you hard. I am remembering stuff too. We put up our Christmas tree and decorations up today. Trevor is getting better too. There are a lot of people missing work at Trevor’s job because of this cold. He shows up. He hardly takes days off. My dad moved to Leduc near Edmonton. His Girlfriend Karen works there. It is going to be a cold Christmas up there. Gary is still going to live in Rimbey. Dad will live with Gary all week and look after him. Then he will go to Leduc. Gary is still working. He works two days a week at the Auction Mart. He does not want to give up his life. His life is work. My Dad also got a big promotion. There has been a lot of Encana attempted bombings and some buildings having problems. My Dad will be in charge of that. He will make new building and plants for them. I can’t stand the attempted bombing of their pipelines. It could cause Cancer and do horrible things to the environment. There were three attempts last month. My Dad always had to work hard to afford everything for us and my family. Three kids and a sick Mom. I am so glad we grew up right next to my Grandpa and Grandma on the farm. I am excited to go see my family. I get real homesick some days. I don’t know where me and Trevor would be with my Dad’s constant support. Karen is great too.It is unwavering. We all need support to survive. We have the strength to do it ourselves. You have to know how to use it. We are superhuman. We have that much strength. Just having this or having family that does, we are strong. We are already fighting. We are already the trough one. Especially if we live with it.
Tuesday, December 2, 2008
Love Yourself
I am still battling this cold. I could not walk my little boy the past two days. I am all cooped up and sick. Today I am a bit better then yesterday. The past couple of days I sat in bed. Trevor has it bad too now. It is going around the whole town. I did not go to bowling. I am too sick to do that. I don’t want to give them this cold. I have been HD free again. Nothing. As I get sicker and sicker, Trevor tells me he never regrets marring me. We know we can make it till the end. We have my Dad and my Mom as examples. My Mom was his high school sweetheart. My other HD Aunt and her husband got a divorce. I feel like there are people inside us. We aren’t undeserving of love. Without Trevor here I don’t know where I would be. I picked the perfect guy. He is totally the care giver type. He is still thinking of going to become a Nurse Aide like me. If no one is there learn to love yourself. We are all amazing people and are worthy. Love yourself with all of your heart. Your worthy. We are all worthy to love ourselves. Don’t let HD take that. Love yourself. Love life.
Monday, December 1, 2008
Bad Cold
I have a very bad cold. I am so sick. I get everything. I just got my allergies gone and now I have a cold. The past couple of days have been HD free though. Even though I am sick. One of my Nurses made me a blanket for Christmas. I am always so cold. It is so warm. The head Nurse Julie put our name on the Ministerial Association Christmas basket. It is the same Church that gave us money so we could get to see my Doctors in Calgary. I get so excited for Christmas. I can’t wait to go home. We are leaving on the 22 and coming back on Jan1. A full five days at home. Get excited for life. Get excited for living. Live again. Live and appreciate your life. Enjoy these holidays. Enjoy your time. Your life is how you live it. It I up to you. Live your life. It is the only way. Sorry so short. I need to rest now.
Friday, November 28, 2008
Live
Yesterday I had a bad HD day. I went out to dinner with Trevor’s parents. I had a hard time eating. I felt like I was embarrassing them. That is how I feel when I eat in public. They don’t mind though. They went with us to the condo meeting. I was so confused. I could hardly remember anything. I could hardly think I was so confused. We have to accept the fact that with HD we are getting sicker. We can’t judge ourselves. It is not good to sit there in fear and not go out. Go outside. Don’t hide. Live your life. Love your life. Accept HD. This is the only life we get. We have to live it. We have to do the most we can. Don’t let HD take the fun away. Fight for your right to be happy. Fight for your right to live. We are the ones that can change our lives. We are the ones that can make our lives. Change your perspective. Change your life for the best. Live for the best. Don’t hide away in the darkness. Come out into the light. This is where you belong. Come out and live. Fight to get your life back. Fight to get the fun back.
Thursday, November 27, 2008
Buying Condos
They are turning our apartments into condos. Me and Trevor might buy one. He will get a second job to be able to afford it. We are excited. Trevor and his Dad can do the renos themselves. They are adding tons of new and exciting things here. We just got back from a meeting about them. We got to meet the nice owners who let us have our Lucky, even though there was no pets in here. I am going to try and work with Trevor’s Dad and earn some extra money too. Alice showed up and watched me do Special Olympics. We learned half of our hula hoop routine. At the Gleaners I cleaned and cleaned like crazy. I am switching Neurologists. The one in Calgary has bad staff. They don’t call back. They don’t take messages. They did not call me and Gary to do the COQ10 study. They never called us. I am going to go to Kelowna. She never showed up at our conferences either. She is good but her staff is horrible. She expects us to drive 6 hours to make an appointment. Forgive yourself. Forgive others. HD is not us. We do not need to beat each other up. To beat up ourselves. It is not good. We can’t help what HD does to us or our family. It is HD. It is not us. We are ourselves underneath. We always will be there. Don’t forget us.
Wednesday, November 26, 2008
2nd Annual Curtains Up for a Cure
Come join Broadway's best and brightest as they herald in the Holidays with a caroling cabaret to help find a cure for Huntington's Disease.
When: Monday, December 15, 2008
Time: 6:30pm - 9:00pm
Where: Playwrights Horizons
416 42nd Street, New York, NYCost:
$60 Reception and Performance$30
The event features Meredith Patterson, who is currently starring on Broadway in Irving Berlin's White Christmas. Meredith's mother tested negative for the HD gene, but she continues to help us fight for a cure.
To buy tickets contact ChenellTannure (ctannure@hdsa. org)
Live Lively
I am so glad to have that little boy. Trevor gave him his first haircut. It looks better then we excepted. I have been dancing. I would sit or stand and start moving back and forth. I have no control. I think it is funny. I tell Trevor I am dancing. He asked me if it bugged me. “I said no, I love to dance.” Take everything lighthearted. My social worker told me that I would always be dancing. Learn to laugh. The twitching when I eat is still going on. My allergies are as good as done. I find my moods are better. My hives are almost gone. Very few are left. Now once again I might get a virus. There is another one that someone brought to bowling last night. Tomorrow I get to volunteer and do Rhythmic Gymnastics. Those are my days. I look so forward to going. Get a laugh out of life. Joke. If you live lively then you have a fun life. It fights HD. A laugh, a smile. They can do so much good. Just get it out. Live your life well. Live it how you want too. Just make it what you want. You got a life here. You can make it to what you want. You can make it special. You’re the one that can do that. Shape your life.
Tuesday, November 25, 2008
HD Christmas Presents
The HD Society of America is selling Christmas HD Merchandise. Give to the cause. Get come Christmas presents that mean something.
Happy Thanksgiving
Happy Thanksgiving My American Friends!
I had a good day. I bowled and got the highest score I have ever got. I was in the hundreds today. My hands are still twitchy when I eat. I have been hallucinating and getting paranoid again. I went months without any. Yesterday I saw what I thought was a red light from a gun. I thought someone was going to shoot me and Lucky. I went and hide in the bathroom until Trevor came home. It felt so real. I have been seeing all kinds of scary things again. It has been so scary. I got to sleep and get scared. Everything feels so real. This the real HD. This is our real life. This is what we are fighting. This is one that we can win. Don’t give up the fight. Never give up on yourself. You are important. Everyone has a propose. Everyone is here for a reason. We are meant to have this. In our families. We are not meant to die. We are learning the way people should. To live life and appreciate what other‘s cannot. We have real lives that have meaning now. HD makes it that. We will never take people for granted. You can’t. Life is too short. Live and accept life for what it is.
HART - research sites are actively recruiting research participants
This an American Study that is starting now. This a good site to join studies.
Monday, November 24, 2008
Don's Funeral
Don’s funeral was a good tribute. It was an uplifting ceremony. They had collages of his trips. He just made it to 44 and died from a heart attack. My allergy attack is going away. My hives are disappearing. They have me on steroids. It is a bad allergic reaction. The only thing is they think I might be allergic to my Epival. It has been driving me crazy. I had one afternoon pill today. It did nothing bad. It made me feel better through. I have been really tired lately. My eyes are having a harder time seeing. Just accept the fact that we are all going to get sicker. There is hope at the end of the tunnel. There are tons of reasons to fight. To stay alive. You have to fight. Every day is a battle that only we know. It is a battle that we can win. We are the strong. We are the brave. We are stronger then we think. We are stronger then we appear. We are the HD warriors. We can use our warrior strength and take back our lives. We have the power. Just use and live. See the sun, shining so bright.
Friday, November 21, 2008
HD Video
All of home support loves Lucky. He is a very passive dog. Trevor is going to try and give him a haircut. He defiantly is my little boy. He loves his Mommy. My best friend Miranda and I are going to make an HD music video. She made a song. A good song. We are going to come and get ideas for the video. We might realise the song. All of the proceeds will go to HD research. She has helped me to hold that HD art auction. She put it together. We have done all of our good humane work together. She is talented DJ who can make music. She also runs her own video company. The thing that home care figured. I can’t remember my meds. My appointments. To brush my teeth. But I never miss a step on here. Still making everything really good and by myself. They all come here. Also helping we are WEAREHD.org. I can get sense out and remember things good. It is just my self care. It is very weird. I just can’t give up. I will never give up. I can’t. You need hope. Every day you deserve to have someone cheer you up. I have the responsibility to do this. One life without hope is too much. Take my happy advice. It is real. There is hope here. There are stem cells. There are tons of breaking treatments. I won’t give up and let you not see that every day. I could not let myself. I feel tied to you. I have HD. I felt like what you were seeing how you were going to die every where you look. That is why I started this. Especially since we have the highest suicide rate out of any illness. I care about every single person’s life. One life lost is too many. They don’t have it. They don’t know it. How hard it is to see that. Everyone live. Don’t give up. Fight for right to be happy. Fight to have hope every day. I will fight to give you hope. Fight to gain it.
Added more to Why Get to Tested Page
I edited that page too. In these I have to take out little Kaiden. Since he died. I will make a cancer memorial for him too.
Thursday, November 20, 2008
Added new care giving tips.
My Mom used to grind her teeth all of the time. I found ways to prevent that.
Don's Funeral
My rash is an allergic reaction. They think I might be allergic to my Epival. Soon as it was upped it that is when it happened. I am allergic to a hundred million things. It could be anything. I got allergy meds and a cream to put on it. My hives should be gone by next week. Today was the appointment so I missed the Gleaners. Still went to rhythmic gymnastics. We are getting the rope routine well now. I was doing it way better. We went out to dinner with everyone later. Don’s funeral is on Saturday at 1:00. Trevor and I are going to it. All of us Special people are going. He was a good guy. He was missed when we were eating. Today I have had an HD free day. Just hand twitches. Just trying to move on. All of us are. The dead people want us to be happy. Live our life the best we can. I like to make my Mom happy. Sometimes I do think of how I made her happy. She is always in the back of mind. Dealing with HD is how I really want to make her happy. She was so full of life and funny. She never let HD take that away from her. Even when it was so hard. She wanted an IV and anything to bring her back. As do I. Even though my extended family wanted her not put her on the IV. That was her wish. That was Dad’s call. He was not going to lose my Mom quickly. Fight for your happy life. Fight for your grander life. Fight to smile.
Stem Cell Sciences Enters into Services Agreement with Huntingdon's Disease Research Group, CHDI Foundation Inc.
There is a merge between the stem cells and HD organization, CHDI Foundation, Inc. they are going to commercialise them. This is a huge breakthrough. Countdown for the cure will end. I believe in stem cells.
Wednesday, November 19, 2008
Cheer up
I was Lucky to have Shirley this morning. She knows how to cheer a person up. I need to go to Don’s funeral. I was grieving bad today. Today I was twitching in my hand when cooking. I find that that is happening more. I also have a problem with choking. Sometimes I choke on water. The past week I have had bad sleeps. I just get to excited to sleep. I am used to periods of insomnia. Sleep gets bad and your symptoms get worse. I fell out of bed twice last night. We need that bedroom rail. Home support are worried that I could fall and crack my head. Let’s put the grief behind us. I feel that the Dead would not want us to not move on. Not live life. They are never forgotten but we can live our life. They want us to move on and be happy again. Especially if it is someone you love. Move on but don’t forget. Never let them fade. Live for them. That is what they would want. Move on and never forget. You can move on and still remember.
Tuesday, November 18, 2008
Greiving
Today on my Special Olympics team members died. His name was Don. He has been sick for a while and had to go to the hospital. He was good. He was one of my teammates. We are all going to go to his funeral. This is horrible. Three deaths so far this year. I am hoping that Trevor’s father will not get a tumer. I could not lose one more.
Monday, November 17, 2008
Twitches
Trevor noticed that when I sleep, my arms getting very twitchy, HD twitchy. I also have a hard time holding my spoon. My hand gets really twitchy. The past three days I have had almost no sleep. It is making everything worse, We will soon get Trevor’s Dad’s results to see if he gets a tumor. I am so excited to go home for Christmas. As I get sicker I try and not let it get to me. You need tons of support. I feel like I got it. Trevor makes the difference in my life. I don’t know where I would be without him. We don’t take each other for granted. Don’t take anything for granted. You don’t know what will happen. Live life with the knowledge of knowing a hundred percent that you love someone. We are put in the position where we have no choice. When something happens it brings us together like nothing. We can be there. Don’t take life for granted. HD in the family gives us the knowledge that others don’t have. When I have a hard day that is what I keep thinking of. The stem cells. Countdown for the cure will be over. We all have that gift of life back. Take your life back.
Sponsor HD Great China Walk
She has put a way to sponsor her walk across the Great Wall of China. Sponsor her.
Sunday, November 16, 2008
World’s First Baby Tooth Stem Cell Bank
This is a huge breakthrough. They can get Stem Cells out of Teeth. Countdown for the cure.
Saturday, November 15, 2008
Full Fill Your Life
My eyes have a hard time focusing. I have been having a good HD days these past three days. I get a feeling that I need my body to freak out. It is weird I get pain in an area and feel like I need to freak out and kick to make it better. I went to Cranbrook on Friday. We did it. It was not planned. It was fun. At the Gleaner’s Christmas completely healthy. Not one single symptom. I had fun. Trevor came too and helped carry stuff in and out. We got toys for Lucky for Christmas there. A lot of Grandparents showed up getting stuff for their Grandkids. It was a good day. Always strive to have a good life. If you don’t live you will regret it. Live life. It is the only way that we can have fulfillment. Fulfill your life. Fulfill your dreams. Full fill your goals. You are the one that can do that. You have control. Fight and gain the control. Take your life back. Get the control. Fight to full fill your life. Fight to live your life full of joy. You fight. Get your life back. We all have the strength to do it. We have to chose to use that strength. That strength can get us through our hell and back again. We can do that.
Thursday, November 13, 2008
Countdown for the cure
I had a fun day. Volunteering and gymnastics. I am going to volunteer at the Christmas sale. It is in Saturday. I will be volunteering from 11 to3. Trevor will also be volunteering on Saturday. They are also going to have Christmas dinner. I love Thursdays. Always so much to do. I love the Gleaners. I love Special Olympics. Find something to love too. Find meaning in your life. Find something to live for. Something to dream of. A future to dream of. Whatever you want to keep you going. Live for something. Live for life. Life has to get better. Better every day. We fight. Things are stacked against us. We are the ones that can beat the odds. Just believe. Believe in miracles. Believe in cures. Believe in life. Believe in joy. Believe in beg happy. Countdown for a cure will end soon. There are many breakthroughs. Lots of hope for tommarorow. Dream for a better life.
Wednesday, November 12, 2008
Fight For Our Life
Yesterday my site went down for five hours. Something happened to my webhost. Shirley my main Nurse’s Mom and Dad both fought in world war two. I thought that was cool. She bought me some sea salt. It helps build brain cells. You just use it instead of salt. Tomorrow I get to volunteer. Then go Rythimitic Gymnastics. I get so excited. I love it. I am excited to go home for Christmas this year. I miss my family so much. We found the way we can rent that home. There is a way that the Government can pay and we can get a house. Low income housing. They will make us a house for cheap here. Something has to be done. Too many stairs here. Get out and volunteer. Make yourself useful. Get outside. Enjoy the fall. Enjoy life. Be active as long as possible. You can fight HD like that. Fight every way you can. Fight for your life. Fight for you future. You fight every day. Every day we get up, it is a new fight. We all win. We can get outside. Be active. Don’t give up. I am still doing my aerobics and yoga. I do it before I get on here. Never stop being active.
Tuesday, November 11, 2008
Remembrance Day
Today we have a day of Remembrance. The soldiers that laid their lives in the line so we can have a better life. Today has been a bad HD day. I got caught in a couple of trances. I could not get out of them. My chorea was really bad. I also was struggling with depression. There is a program here that will pay our rent on our houses and apartments. We are looking into it. This one will not be safe for long. We have four steps of stairs. Move on with your life. Always see the rainbow of hope. That sunshine beam shining and saying that our life is good. We have to appreciate our life. Love our life. Accept HD. Accept what HD does to us. We can fight to be happy. We can fight for the hope. We can fight and win. We can take our lives back. We can get our future back. We can get our dreams back. We are stronger then you think. We know we can fight. We know we can win. We can win this fight. We can win. We can live our life with joy. Joy and laughter. That is what we need. Fight for it. Our life is on the line. take our life back. Take our future back. Get our hope back.
Monday, November 10, 2008
Forgiveness
Today my Occupational Therapist Amy came over. She took a look at me going up and down my stairs. I walk on my tiptoes and lean forward. I forget to use my grab bars on there. We are getting a bed rail put on my bed. I have been falling out of it while sleeping. We are looking into getting a low income disabled house. There are tons here. We need one. There are tons of stairs here. It is not safe. Today I am having an HD free day. I have been drinking boost every day. I just want to gain weight. All of my Doctors laugh. They say that I am the only young girl they know that wants to gain weight. Don’t let HD not let you live your life. You have to love yourself. We are not HD. We are here. We are real. We have feelings. We aren’t the disease. The disease will never be us. Forgive yourself. Forgive your family. Don’t let HD take the hope away. Live the dream. Live for your future. Live for the now. Live for the then. Just live. Appreciative every second. We feel everything. We know everything more than others. We know how important life is. We know how to live now. Just live. Just live and love your life. Your family. We never take things for granted any more. Trevor and I don’t take things for granted. Neither should any of you. We have lessons that we have learned.
Brain Exercises That Boost Memory — and May Fight Alzheimer's
These tips and mental exercises can keep your brain sharper and may even help prevent the signs of Alzheimer's disease
Sunday, November 9, 2008
Friday, November 7, 2008
Love Your Life
I find the extra Epival in the afternoon is making me less irrational and less angry. I had no idea it depletes in the afternoon. At least we know now. My chorea is bad. Other then that I am feeling good. I had dinner with Alice. We took our dogs out for a walk. It was fun. We are trying to repair everything. It is good. We have to be forgiving. Lucky loved the walk with his cousin Princess Abbey. I have the hardest time seeing cars. That is why I won’t walk alone anymore. My Nurses are doing a great job. I walk so fast Julie was saying that I take them out for a walk! I heard of people with HD getting ran over. I took the initiative and called Julie to set it up. They are setting me up with a reminder lifeline. It will remind me to take my meds. Also for appointments. Just in case I fall, it helps you get a hold of an ambulance if you need one. The Gleaners has a Christmas Party. They are also going to have a gift exchange. I am excited. Get excited for your life too. Live with HD. Don’t let it rule your life anymore. You rule your life. Take it over. Live again. It is your life to live. It is your life to have fun with. Have fun with your life. Show it doing the things that make you happy. Happy is the only way to live. You can get there. Just try. Laugh. Have a good time. Show HD that you own it.
Added a Matthew Shepard Erase Hate Banner
I put up this banner to make sure that no one else has to die. Erase hate from our lives.
Another Award
This was a Genie Excellence Award. It was a hard one to win. I had to pass through three judges.
Thursday, November 6, 2008
Bright Future
Today I am doing better. I had an almost HD free day. I went to volunteer today. One of my co workers and Special Olympics instructor Gerri, got me some ensure puddings. It was nice. I went and did rythimatic gymnastics. We have our routine down pack. Today someone accidently through the rope in one of the flags. I got confused and forgot what time it was. I thought it was at 5. It was at 4. I got o do it for 15 minutes. At least I did it for a bit. Nobody be afraid of HD. No one needs to fear it anymore. No more fear. No more scares. HD is temporary. There are cures here. They are here and now. Live for them. Live for the moment. Make everyday count. Live your life full of hope and peace. Get the peace inside. Get the hope inside. HD will not take any more lives. It will not take us. We fight and live. We will not let HD scare us anymore. Don’t let it get in your head. Get it out of your head. We don’t have to live in fear. You know different now. You know there is hope now. I want you to see as I see. A bright place where we are free of HD. We have lives. We have futures. We can live in harmony with everything. That can be us.
Sponser this Carlsbad Maraton Runner
On December 5, 2007 I lost my mother to a horrible disease called Huntington's disease. My mother was not only the strongest person I knew but she was also my hero! Unfortunately, because of this disease my mom wasn't able to watch me grow up and teach me the things that mom's do best! I feel robbed to have someone I needed so much in my life to be taken from me at such a young age.
As many of you know my family Misty, Deanine, Troy, Cheryl, and Melissa have ran previous marathons to raise money for HDSA to help find a cure. So, with that said I am very pround to announce that I will be running in the Carlsbad Half Marathon on january 25th, 2009 in memory of my mother and also for my Aunt and brother who were both diagnosed with Huntington's Disease.
Ihttp://www.firstgiving.com/ashleyshaw
Wednesday, November 5, 2008
HD Free With PGD
HD Free With PGD! Trevor and I want to do this.
Planning an HD-free family with IVF/PGD
Yes, you can stop Huntington's Disease in the future generations of your family! With the help of skilled medical professionals, YOU have the ability to prevent your children from inheriting HD.
Planning an HD-free family with IVF/PGD
Yes, you can stop Huntington's Disease in the future generations of your family! With the help of skilled medical professionals, YOU have the ability to prevent your children from inheriting HD.
Obama! Obama! Obama!
There will be stem cells testing now he is in power. There will be gay marriage. He will get rid of US genetic discrimination. He will get you health care. I wish we had an Obama here. The first Black man! Come to Canada and take over, please...
Added a Video Page
I put out my full two minute video Hero one I took myself. Every few months I will take more. I also want more HD pics of myself. You guys can see the HD process with me.
Remembrance Day
I am having a better HD day. I am healthier. Today we had breakfast with Trevor’s Mom. I remembered her usual dinner. I went there once. That’s how sharp I was. I lost 3 lbs in the past two months. That is why I am going to get a dietian. We are thinking that we aren’t getting benefits. We are going to talk to our MP. We need something. At least with Trevor’s job now, he gets paid a lot more. I love very vet that participated in World War 2. In Hitler’s world, everyone with a genetic illness would be killed. I am glad that they fought for our freedom. I always used to write Remembrance Day poems and read them at school. I love the freedom. I am glad this day is here. There are lots of Vets here in Creston. Shirley my Nurse’s, Dad fought there. Let’s live the life they set for us. Let’s live with the freedom. The knowledge. They fought for us. So we could be free. So we could live. Let’s show them how we live. Let’s show them that we love being free. They made sure that we could survive. Living life with HD is the only way to show them, that we appreciate the sacrifice. Live for them. They died for us, so that we can live. Show them. We know how to live We are free to live as we want. They died for that. Show them that us who are sick, are grateful. I am grateful for the life they have given me. Be grateful for yours too.
Tuesday, November 4, 2008
Fight
I am so sick today. My eyes can’t focus. I am having Amy my Occupational therapist over, cause I am falling a lot. The meeting went good. All of my Doctors and home support were there. They upped my Epival. I was getting angry in the evening. Epival wears off in the evening. Now I will take it in the afternoon. I am being hooked up with a dietian to help me gain weight. The conference was so good. I love them. Julie the head Nurse came and gave me boost and some food. This is the worst month for food. I will stay up all night and see who wins in the election tonight. I am crazy about elections. I tell Trevor they are like my Oscars. I did bowling today. It was so fun. There are a lot of people there that amaze me. I can’t see how they do it. Don’t disable yourself. You are the one that chooses that path. Are you going to do the best? Or our you going to lose yourself to HD. You can fight HD. This activity is the best way to fight. It will keep you healthier longer. Fight it back. Fight it in keeping yourself active as long as possible.
Monday, November 3, 2008
We are all heroes
I have the flu today. I have a fever, upset stomach, and pain. Yesterday I almost fell outside. Trevor caught me. Today has been a bit better. I had to get home support to give me a ride to one of my appointments. I had to set up the meeting. I had a hard time telling the Nurse stuff. I would forget half way too .I was too sick with the flu to walk. We can see Trevor’s Dad’s eyes blink. I hope it is not cancerous. I finally got Trevor to join WEAREHD.org. I been trying to get all of my family to join. Gary is to in denial to talk. Trevor takes everything harder then I do. We are having that care conference tomorrow. Every Dr in Calgary, My Dad and home care, our mental health workers. Also our family Doctor will come. They do these every 6 months. I am going to learn about stem cells and seeing if we can still enter these studies. They are really helpful. Don’t lose the fight. We are in the biggest fight for our life ever. Every day I fight to. We have to fight a lot. Only we know that. Every day we fight to just to smile. Every day, every second is a fight. We can win. It will all be worth it in the end. We will be cured. We will not suffer and be left to die. We will suffer and live. We are too great of people to let die. The countdown for the cure will stop counting. We can get there. We have to fight. To be strong to get there. Show courage. This is our battle. We have our lives on the line. Only we can win. The cure will come. We can all win. We just have to fight with all of heart. This was inspired by a family that in the support group, heard about how they were all going to die. There was no hope there. They don’t have HD all of these sites and blogs. They have no idea how this affects us and our families. I do. I know. That is why I started this. No matter how sick I am, I will never stop. I can’t see anyone else being scared. One life taken is one to much.
Sunday, November 2, 2008
The 2008 Celebration of Hope Gala
The 2008 Celebration of Hope Gala presents Don’t Undress Until You Die The Wit & Wisdom of Al McGuirea one-man play written by Dick Enberg and starring Cotter Smith A benefit for the Huntington’s Disease Society of America Wednesday, Nov. 12, 2008 @ 5:30 pmMuseum of Contemporary Art, San Diego in La Jolla
Calfornia Stem Cells
This is a good article on stem cells in California. This is huge. This is our cure. My Dad wants us to get stem cell transplants. This our cure. this is our time.
http://www.hdsasandiego.org/dsp_article.cfm?ArticleID=391&CategoryID=6
http://www.hdsasandiego.org/dsp_article.cfm?ArticleID=391&CategoryID=6
Get a team
Get a Team or donate.
I found this just for you.
Sunday, November 02, 2008Team Hope Walk- Tucson, AZGene Reid ParkWHAT: Team Hope Walk WHEN: Sunday, November 2, 2008 WHERE: Tucson, AZ For more information please contact:http://www.walk4hd.org/
www.walk4hd.org
I found this just for you.
Sunday, November 02, 2008Team Hope Walk- Tucson, AZGene Reid ParkWHAT: Team Hope Walk WHEN: Sunday, November 2, 2008 WHERE: Tucson, AZ For more information please contact:http://www.walk4hd.org/
www.walk4hd.org
Saturday, November 1, 2008
Happy Halloween
I have been falling really bad lately. I have hurt myself. I have almost fell backwards down the stairs. I fell out of bed. It hurts. I have been getting bad again. I have two days of bad symptoms. The good days are gone. It is weird but we have good days and bad ones. We had a fun time dancing. I ran into one my Special Olympic coaches there. We also ran into a new friend and took her. She seems nice. I need more friends since Godmother moved away. I am visiting my sick friend. She is so sick she can no longer do Rythmitic Gymnastics. She is in the late stages of MS. Her and I were the only two that could get to sick to do it. I am losing my mind again. I have slurred speech now again. My chorea is bad. I am dancing like crazy. Don’t live your life afraid of life. Don’t shut yourself indoors and not live. You need sunshine. You need life. You need friends. This your time to shine. The sun makes us shine. The outdoors make us shine. Find things that make your glow. Find the good there. Find the good in your life instead of the bad. Live and love yourself. We are all good people. We deserve to be happy. We deserve to have a life. We deserve to have the best of life. Just live. Just be happy. Make your life the best you can.
Thursday, October 30, 2008
HD Marthon
Sponser her to help us find a cure. A lot of people do this for us. I think it is amazing.
Gymnastics
I have a hard time focusing my eyes. They shift from side to side. I am meeting a lot of people as one of the site leaders of WEAREHd.org. It is a good place. Some scared people are there. It is horrible. I feel so bad for not starting this mission early and saving a lot more lives. I did have to get my symptoms first though. Like a true hero I just wish I could have been here longer. I am glad to give you guys your daily hope. When people send me emails I usually blog and help them. I did a blog post inspired to help people. If you want any problem or to find out how I dealt with it, email me. I will blog about it. I had fun volunteering at the Gleaners. They are having a Christmas sale of all the toys I worked on. I work with the toys. Everyone wants to work there. It is fun to play with toys. Tomorrow we are going to a Halloween party. I did Gymnastics today. We learned the rope routine that we are going to do locally in Cranbrook. It is a fun routine. We also do rope, ribbon and skipping rope. We listened to all of the music to get the feel for it. I was confused for a bit. Today no HD. No chorea either. There is a program here that would pay for my supplements. Right now we can’t afford anything but ensure. Don’t disable yourself. Move. Fight HD. You can hold it back longer, if you keep running. Keep pushing. Keep going. Fight. Don’t stop. Don’t let HD win. Fight for your life.
Calfornia Stem Cells
This is our cure. They soon will be curing us with these stem cells. Countdown for the cure will happen soon. It is all uphill here. We are all saved. No one else has to die anymore.
Wednesday, October 29, 2008
Two more awards
Someone loved my site they gave me two awards. One is a you touch my heart award. The other one is a beautiful site award.
Accpet HD
I am having another HD free day. No chorea today. It is weird. Usually I have a lot. I found out that MSG kills our brain cells. Sea salt can build them. We are going to get everything tomorrow. Don’t eat Chinese food. I just came back from a home care meeting. Accept HD. We have it. We see it. The only way to accept is to see. Accept that you or your loved ones are getting sicker. Accept it. HD is an illness that affects the whole family. Open your eyes and see what is going on. That is the only way to be at peace. Peace and harmony is your life. Being in denial won’t help a person get there. Don’t hide. You can’t be happy living in fear. You can’t be happy being scared. You don’t have to be afraid any more. Accept HD. Everyday I accept the fact that I am getting sicker. I am going to get sicker. We are all getting sicker. We just don’t have to die anymore. Not with the solid research that is here. By me accepting HD. I have moved on and live my life. It feels good to get out of denial. Get right out.
Petition To Get US Social Security
Sign this and get social security to add us to their definition of Neurological Diseases.
Tuesday, October 28, 2008
Gaining Weight Again
I visited our Doctor today. We need more paper work to give to the government for disability. I gained 1.5 lbs in 2 weeks. I look a lot healthy since the last time the Nurse saw me. I had fun bowling. I did good today. I was very confused today. The past two days very confused. I am having a hard time typing and spelling now.My chorea was bad today. It is getting worse. I have a friend form Bowling that lives in the same apartment building. We are going to visit her. My friend that has the stem cell info. She just had spinal surgery and just got home. She has the info about getting all of that done for free. Love your life. It is temporary. Then the cures come. That is the end of all the torment this disease is going to have. We have that care conference on Nov 4. I can talk to my Neurologist to see if we can still do the COQ10 study. We went up there Trevor was switching jobs. They would pay for our gas if we went to Calgary. It is 5 hours from here. We could not afford it other wise. Live with the hope. A cure will come. Get into as many studies as possible. The creatine one has not started yet. The researchers can’t do it themselves.
Monday, October 27, 2008
Bowling
As far as that article goes about telling your partner. I told Trevor the first date we had. Everyone I dated I would tell right away. I felt it was wrong otherwise. Today I am having a bad chorea day. It is mainly HD free day. Tomorrow I get to go bowl. I am hoping to get another over 100 game. I could not believe it. I was in shock. I love Special Olympics. I get so excited when I get to go. I love it. I love the people. I have made tons of friends there. I can’t believe there is an almost blind person there and doing it. Enjoy your life. Accept HD. We have it. It will make us into a figment of us. We are still the same people. Don’t forget about us. We have feelings. We have a disease that we did not chose to have. We have to accept this disease. We need to get better. Sitting in denial will only make things worse. Own up to HD. Own up to life. Own up the power of knowing. The power of knowing how to look after ourselves. Accept and move on. Get hope for the first time in your life. Know real hope for the first time. Accepting it is the only way to get to that happy place. Where would you rather be, happy or sad?
Sunday, October 26, 2008
Another Award
I won an enchanted award. It is number 65. I have the most awards of any person in a short time. Believe in yourself. Don't let anyone tell you you can't do anything. You are not useless.
Saturday, October 25, 2008
Offical Everyday Hero Video
I got sent the official we care video. I put it up into on the Everyday Hero page. They gave me some We Care badges to put on here. They had more people with clips then they could fit in. They loved my bit and put it in. I am having an HD free day. I am missing that little Kaiden. I don’t know why we have to lose our young ones. It is not right. I would give up life so they could live. I would give up my life for Gary too. I love HD. I love my life. Last time I talked to him he was depressed again and fearful. I tried to cheer him up. Told him about the hope for us. Trevor’s Dad might have a tumor. Now we have to deal with that. We find out next week. We are hoping it is malignant. All of this is too much for me to deal. We have to learn to deal with loss. It is part of life. We lose people. They want us to move on. They want us to live. Not to lose our lives in loss. Live our lives. We never forget. We can live. We will never forget. I will never forget my Mom. She wants us to move on and live. Why would someone that loved us, wants us to suffer. They don’t want us to lose yourself in grief. Come out and don’t lose yourself.
Friday, October 24, 2008
Support My Journey
I am running my very first half-marathon for my mother and my aunt and others who can no longer run because of Huntington Disease. When you see how Huntington Disease takes people long before their time, destroys their lives and the lives of their family members for 10 or 20 years before death, you wouldn't wish HD on your worst enemy.
Please sponsor me and help make a difference. Currently, there are no survivors of HD but with your support, we can provide crucial support to families dealing with HD and invest in research to find treatments and a cure.
Live with me
I am having an HD free day. I love helping out on WEAREHD.org. I welcome people that come there. I like welcoming them. I think everyone should go there. It is a good support there. I enjoy going on there and saving people. That is me. I have a super saver syndrome. I have to save everyone. That’s why I started this. To save as many people as possible. Show people there is hope with HD. It is real. It is here. There is hope now. I seriously feel so bad for not starting this sooner. I had to get sick first before I could of done it. I need to show some symptoms. Tell everyone what is like. To show people that hope is there. When I found out I was an everyday hero, the email I sent said I was just doing what I thought is right. That is what all heroes say. We get a cause and we feel. We feel what is right. We feel what needs to change. They are on Canadian TV. All lot of people nominated this for me. I had no idea that this could happen. Let’s show everyone that hope is here for good. Use everything I have taught you to live. If I save one life, that’s all that matters. We don’t have to go to sites that tell us we are going to die anymore. We know life now. It is hard to live when you are told that again and again. That instills itself upon us. Fight it way. Your lives means nothing to them. Every one of you means so much to me. Every life is important. The difference is I have HD. They can’t understand what those fear tactics do to us. I know.
Hoopathon
The 11th Annual HDSA Hoop-a-thon is dedicated to the memory of Josh Keeler (1987-2007), a lifelong friend of B.J. Viau and a supporter of the Hoop-a-thon event.
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