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.
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