Moving Blog

I am moving. I am still going to blog here until I move. Google has messed up my blog. I found a good blog. There is no customer service here. I am moving everything over there. It will take a while. I have 600 entries. I had a great day. I went out for a hike with Trevor’s Mom up Goat Mountain. It was beautiful. Lucky and Princess enjoyed the hike too. We have a meeting tomorrow and we get the disabled condo. We meet with them and we can move in March 1st. I needed that so bad. These stairs are a danger I have four flights of stairs here. I am constantly falling. Trevor’s blood pressure is down 25 points already. Tomorrow we got the Special Olympic dance. I am excited about that too. Don’t lose hope. Always think of the life we have a head of us. It is here. Countdown for the cure will end. Now those stem cells are here. Fight to survive. We can win this war.

More Sports

I had fun. This is a great day for me. I have so much fun. They are starting up three new Special Olympics events here. They are boccie, floor hockey, and tee ball. I will join them all. I am excited. More sports to do. My HD symptoms are still getting worse. Really hard time eating today. Hard time with everything this past 2 weeks. I am getting so sick. Can’t dress. I almost fell down the stairs yesterday. Every night I am afraid to go to sleep. I am seeing ghosts and aliens. Today I was confused while doing rythmitic gymnastics. Tomorrow we are reviewing my meds. Hold on to hope. Hold on to life. Hold on to everything. Live for everything. Hold on to the thought of life without HD. That will happen shortly. Too many advances. Too much hope. Our future is coming. Our future is now. Try to live the best you can. Make your life worth while. Take the power back. Take the power form HD. It is yours. Take it back. That belongs to you. Fight for your life back. Fight for your happiness back.

Forgive

I have been feeling a lot sicker today. Been really bad this week. I had trouble dressing this morning. I am excited for tomorrow. Got the Gleaner's and Gymnastics. Forgive yourself. HD is not us. We are ourselves. We deserve to be thought of as ourselves. We are the same person inside. We are the same outside. We deserve the right to love and be loved. We don’t deserve to be treated badly. HD takes over. It will never take the real us. We are there. We are here. We will never go away. Remember us. Don’t forget. Never lose sight of who we are. We are here still. We will always be here . Never go away.

Strong

We are planning a trip to Vancouver and Victoria. I have never seen the ocean. I want too. We are excited about that. I had an amazing game of bowling, I got a spare. Did really well. We have a Special Olympics dance to go to on the 31st. The last one was canceled. We hope this one works. I am still really symptomatic right now. I am choking a bit on water now. Not worried though. Why would we worry when we have the knowledge? Deep down, feel the hope. Things can only go up. Things are going our way, really fast. Soon HD will just be a word, not a disease. We don’t have to fear it anymore. We don’t have to fear anything anymore. Live your life fearless. Live your life full of hope. Full of life. It is the only way to live. Fight for the light. Fight for your life. Your life is worth fighting for. Get that strength. We are all strong. We have HD. It makes us tough. It makes so strong. We can fight to keep positive. We can fight to keep our chin up. We can fight for laughter in our life. We can fight for anything we want. From every bone in our body, we can fight.

10 Everyday Super Foods

These easy-to-eat foods are packed with multiple nutrients to help you stay healthy.

http://www.webmd.com/diet/guide/10-everyday-super-foods?ecd=wnl_day_012709

Martin Luther King JR. Day.

Sorry it is late. Trevor redid my computer and I just got photoshop. I bet he would be happy knowing that Obama is on the Presient.

Living Life

Trevor, cut Lucky’s hair again. It looks cute. The past couple of days my HD has been bad. I get into these trances where I can’t look away. I have a hard time focusing my eyes on things. They move. I have been falling, tripping, and bumping. My drooling has gotten worse. Every night Trevor helps me into my pajamas. I got my first pay check yesterday. I enjoy working with Molly, even though some days are a challenge. She remembers me now. I dyed my hair blonde. She said you look different. I never thought she could remember. She calls me her special friend. I am meeting all kinds of friends at Swan Valley. Getting to know other patients too. I am so excited for Stem Cells. I want to give Obama a hug. This is huge. I can’t wait to go to the States and get Stem Cells. Gary was excited when he heard this news. He just gets so depressed and lonely at home. Dad is hoping that these Stem cells are out really early. He also wants Harper to make them legal here too. I can feel my Mom pulling us to Stem Cells. This week we find out if we get into the Disabled housing. Trevor is feeling better since he is on these meds . He is eating extra healthy too. Hope is here. Hope has always been here. We had to find it. I am here to show it to you. Plan your future. We get closer everyday to getting for a cure. The generations will be no more. No one has to die anymore. The countdown will stop. So many options to help us. How can we live in a world of fear now?

STEM CELLS ARE LEGAL IN THE STATES!!

I love you Obama. Change is here. Change is now. I can't wait to go to the States and get treatment. This amazing. I am in tears right now. This is huge. Stem Cells can take way all of the symptoms. The cure is here. The cure is here in three years. Me and Gary will come t0 the States for treatment. Countdown for the cure.

In a watershed moment for one of the most contentious areas of science and American politics, the U.S. Food and Drug Administration cleared the way for the first-ever human trial of a medical treatment derived from embryonic stem cells.Geron Corp., a Menlo Park, Calif., biotechnology company, is expected to announce Friday that it received a green light from the agency to mount a study of its stem-cell treatment for spinal cord injuries in up to 10 patients. The announcement caps more than a decade of advances in the company's labs and comes on the cusp of a widely expected shift in U.S. policy toward support of embryonic stem-cell research after years of official opposition. "This is the dawn of a new era in medical therapeutics," said Thomas B. Okarma, Geron's president and chief executive officer. The hope that stem-cell therapy will repair and regenerate diseased organs and tissue "goes beyond what pills and scalpels can ever do."Limits on stem-cell research, which prevented federal funding and were imposed by Congress and former President George W. Bush for ethical and religious reasons, have had a chilling effect on both academic and corporate research involving such cells. Proponents of stem-cell research say restrictions have delayed development of promising new treatments, while critics contend that harvesting stem cells from embryos destroys human life. President Barack Obama said during his campaign that overturning research limits would be a top priority in his administration.Both Geron and the FDA said the timing of the decision to approve the study was coincidental. "The FDA looks to the science on these types of issues, and we approve [such applications] based on a showing of safety," said Karen Riley, an FDA spokeswoman. "Political considerations have no role in this process." Approval of the study is far from a guarantee that stem-cell treatments will work or make it to the market, but it is likely to be seen as an indication that opportunities for stem-cell research are poised to open and will fuel enthusiasm among academic and corporate researchers. Mr. Obama's plans for acting on the current research restrictions haven't been finalized. Shortly after the election, Obama advisers thrilled biotech companies and investors when they suggested that the new president could use his executive authority to undo the Bush administration ban. But in a Jan. 18 interview on CNN, Mr. Obama said he might let Congress take the lead. "I like the idea of the American people's representatives expressing their views on an issue like this," he said. Regulating stem-cell therapy is new turf for both industry and the FDA, a major reason why it took the agency nearly a year to review Geron's 21,000-page application for the trial, which it filed last March. Approval came in a phone call Wednesday afternoon, Dr. Okarma said. The study will focus on the safety of the treatment. At an FDA hearing in April, several firms' executives and researchers complained that they were at a loss about what the FDA wanted in terms of clinical trials involving stem cells because the FDA itself wasn't sure.Embryonic stem cells are the building-block cells that help drive prenatal development. Geron has developed banks of embryonic stem cells and found a way to coax them into differentiating as they do in nature into progenitors of specific cells that make spinal-cord tissue, heart muscle, cartilage and other organs and tissues. Spinal-cord injury is one of medicine's most debilitating conditions, typically causing paralysis and other issues for which there are few, if any, effective treatments. The Geron study will enroll paralyzed patients who can be treated within 14 days of their injury. Patients will be evaluated for at least one year, after which, if the treatment proves safe, the company hopes to increase the dose and expand the potential candidates for the therapy. In addition to safety, researchers will look for signs that the treatment is effective.

http://www.ft.com/cms/s/0/8c9243f6-e924-11dd-9535-0000779fd2ac.html

High Blood Pressure

I am having a bad HD day. I have been drooling. I have been falling. Bad dementia. My chorea is so bad. I have been anxious. Trevor’s blood pressure is getting worse. We can’t manage it our self now. He was put on ACE Inhibitors. We hope they work. I don’t want him to stroke or get a heart attack. I have been the one monitoring his diet. He has a sweet tooth. It is not good. Worry does no good. Worrying makes us sicker. Try to not to worry. Coast through life. Let worry slide. Let the anxiety slide. Let the peace take over. The peace is what we need. Peace and tranquility. Live for the peace. Make the time for peace. Make your life harmonious. You are the one that can do that. Make your life fulfilling. Full fill your dreams. Ful fill your goals. Always look forward. Always look at the future. Always see how bright it looks there. It is not dark in our future. It is not confining. It is where the light is. We can believe now in the cures. We can have hope. We can get there. Study your future. Make a plan of the things you can do when you get cured.

Drooling of Saliva or Hypersialorrhea

Unfortunately excessive drooling of saliva or hypersialorrhea is a commonproblem in neurodegenerative disorders. We've both seen in it our own lovedones in the later stages of HD. It is usually caused by swallowingdysfunction and can facilitate choking, aspiration, and chest infections.This problem may also be attributable to eating problems, choking, andinfections as well lead to such complications as dehydration, a reddeningaround the mouth, chin, and neck. Just as important, socially this problemis embarrassing therefore affects the persons social interactions. It is said that drooling is caused by a defect in the oral or voluntaryphase of swallowing, resulting in a buildup of saliva in the front of themouth; poor head control; constant open mouth; poor lip control; ordecreased tactile sensation. In addition, adverse drug reactions involvingtranquilizers and anticonvulsants can cause hypersecretion of saliva.Although drool can be very undesirable itself, has several specific andimportant functions: it lubricates food for swallowing; it helps in thedigestion of starch; it is crucial for oral hygiene; it maintains toothstructure and integrity; and it has various immunologic and nonimmunologicproteins that destroy intra-oral bacteria. Detailed evaluations can help determine how bad the problem may be.

Countingthe number of bibs or shirts soiled each day provides a subjective estimateof the severity of the condition. Physical findings such as skin macerationon the neck, chest, and hands due to dampness and constant wiping confirminitial impressions of severity and indicate the need for treatment. In the earlier to mid-stages of HD the management of sialorrhea is usuallybetter helped using a team approach including an otolaryngologist, a speechpathologist, and a dentist. The speech pathologist determines theprobability of improvement of oral-motor skills with time, therapy, or both.The dentist assesses structural abnormalities and health of the teeth andgums. The otolaryngologist examines for head and neck pathology, looks forupper airway obstruction, and determines the severity of the droolingproblem.

Once the team has evaluated the person, the type of treatment to be used is decided, however, it typically consists of a combination approach.During this stage the current treatments available are behavioral therapy,oral-motor therapy, medication, and surgery. Speech therapy and behaviormodification techniques are said to show only modest improvements and do nothave long-term effects, whereas, medications and surgery have a much higherrate of success. In the later stages of HD, we've talked about using a couple of differentmedications for excessive salvia on this list. Medications used for managingsialorrhea work by drying up the secretions, however, their use oftenresults in a dry mouth, causing swallowing difficulties and poor oralhygiene. These drugs most often contain atropine sulfate, scopolamine, orglycopyrrolate, which, in themselves, are used to treat a variety ofdifferent conditions.

While these medications have been shown to decreasethe amount of saliva production, they have side-effects that should be givengreat consideration before the decision is made to begin using medication asa method to control drooling. The goal of treatment is to reduce drooling but maintain a moist, healthyoral cavity. No single therapy has been documented to resolve sialorrheasatisfactorily in all patients. If anyone does consider a saliva treatment,it is important that the advantages outweigh the disadvantages of decreasingsaliva in the mouth. More specifically, whatever saliva management method ischosen, it is important that the mouth be kept moist. To completelyeliminate drooling risks the significant complication of xerostomia [drymouth]. I.e. it's another one of those situations where a decision needs tobe made to weigh whether the side effects from a potential medication take aback seat to improving the persons overall quality of life!

Flu again

I have a hard time typing some days. Hard time spelling too. A bit of dementia today. I had the flu today. I could not go. I get everything. I have a low grade fever. We are thinking of having our Psychiatrist hook up us with an apppoiment. DR. Trew will respond. We have no problem with his office. We are now depending on my family Doctor. Gary has to too. They can’t get a hold of our Neurologist either. Come everyone live with me. Laugh. Enjoy what you have. Enjoy what you don’t. Sacrifice for your right to be happy. Sacrifice for a life that is fruitful. Sacrifice is what we do when we wake up. Just struggling to be happy some days is a challenge for us. Just remember that there is hope now. All of this HD will disappear. The generations will be no more. There are so many treatment options for us. There is more research then there is for Alzheimer’s. We have little funds, but we are using them well. All lot of people here in Creston donates for the HD Society. Give and join studies. Do them for me. Be your own advocate for your life. You want to be happy. No one wants to be on the dumps. Just look future forward. The future is when we chose it to be. Miracles’ can and will happen.

More Updates

I added more to my HD info page. Take OMEGA 3.

Embrace Life

Today I feel a lot better. We might take that airplane ride soon. Our pal knows a fried who has a helicopter. They both could take us up. I had trouble sleeping last night, I was so scared. I have been really healthy lately. Not a lot of symptoms. Just a bit of chorea here and there. I love Thursdays. I have Gleaner’s and Rythmictic Gymnastics. I get so excited. Everyone keep on living too. We have one life to enjoy. Live your life. Do the things you always wanted to do. Don’t let HD get in the way. You need to enjoy the moment. Enjoy life. Laugh. Make your world a joke. All of this can heal sore wounds. Accepting HD, will let you have a better and happier life. If you hide it, it festers. It can get ugly. We don’t need that. At the age of 12, I knew about HD and my 50-50 shot. Whenever Mom would exhibited symptoms, Dad told us it is her and not HD. My family never was there. I know only Gary was in denial for years. Scott is petrified to get tested. I tell everyone about my HD. It if no secret. Do not hide from it. Embrace it. Embrace HD. You can’t imagine it does not exist. Embrace and learn to love yourself and HD. Embrace your life. Make it what you want. Have fun. Enjoy your life. The longer you fight, the better the results.

Insomnia treatment: Cognitive behavioral therapy instead of sleeping pills

Insomnia is a serious disorder and effective insomnia treatment can be crucial to getting the sleep you need. Until now, there were few safe, effective, non-drug insomnia treatments.

http://www.mayoclinic.com/health/insomnia-treatment/SL00013

Food Poisoning Health Center

FDA: Don't Eat Products Containing Peanut Butter or Peanut Paste That Might Be Tied to Salmonella Outbreak

http://www.webmd.com/food-recipes/food-poisoning/news/20090120/peanut-butter-product-recall-list-grows?ecd=wnl_nal_012009

Fight For Your Life

Someone again gave us 50.00 dollars in another card. We think it is the same person. We are so touched. We got our disability early. We got 2570.00 dollars. Next month we get 900.00 dollars. We are so excited. The plane ride should happen anytime soon. Our head Nurses’ Husband will take us. My life alert is working well. I love the reminders on it. When the Lady was here, she said I had tremendous sprit. She has a sister who has Parkinson’s. She said she is the same as me. She said we have more sprit than her. Today I had fun at Bowling. Everyone was asking what my life alert bracelet was. I did good again. I am getting better. I love Special Olympics. I have met lots of good friends there. I always have a good time there. The past couple days I have been a bit depressed. Today I woke up and told myself to have a good day. In the morning you can make our break your day. You have the choice, of if it will be a good one or a bad one. My Nurse Twila this morning and Katherine cheered me up too. Fight like your life is on the line. Make your health and happiness your main priority. Don’t let HD tear you apart. Fight and keep your balance. You can be physically happy and emotionally happy. You just a have to fight for it. It is our fight. We can win. We can get all of the things we want in life. Just fight for them. Every day we have to fight. Only we can understand.

Forgive

Trevor went back to work today. He could not go to the volunteer meeting. I did not go. I did not want to go without him. I have been spilling everything and anything. I have been falling, tripping, and bumping into things. When I was home my Dad told me to slow down. I had the flu this weekend and could not go to work. I am hoping I bowl as good as last time. Last time I got two spares. In Rythimtic Gymnastics we are getting everything down pact. Someone else is going to join us. We have to make up for the two that quit. Lucky is enjoying his two Shiztus Dog friends. We took them out for a walk yesterday. It is good for him to have friends. Never forget about life. Never take for granted the things you used too. HD will make you cherish every moment. Trevor and I never take each other for granted. You never know what could happen. Cherish each other. Cherish your life. Forgive HD and cherish yourself. Forgive and cherish family. If you do take someone for granted. You end up thinking why did I take them for granted. You will never get closure. You are the ones that can make that change. Get close.

More Updates

I added a new poetry page, Live For It.

Sponser the Carlsbad Marathon

I am once again running a race to raise awareness and much needed funds for the Huntington's Disease Society of America. This time I am running in the Carlsbad 1/2 Marathon instead of the Rock and Roll Marathon. My mother started showing signs at age 40 and died at 59. I am 30 right now. If I have Huntington's Disease I am looking at another 10 years to truly enjoy my family and friends. That isn't enough time and I am scared to death. I run because I still can. Please donate what you can and ask your friends to do the same. Please join me in my fight.

http://firstgiving.com/curehdnow/

Join the Carlsbad Marathon

Expo dates and times are:

Friday, January 23 from 2 to 6 p.m. Saturday, January 24 from 10 a.m. to 5 p.m.

http://www.carlsbadmarathon.com/site5.aspx

Future Forward

All of the advancements are real. They are here. Life is getting more hopeful. We can see now. We can see that everything is getting better. No one has to die anymore. The cures, the treatments, are real. The future is here. The future is now. We demand a future without HD. We will get that. This is a lesson. Not a death sentence. We aren’t on death row. We can escape our sentence. We can show them that we can live. We can fight. We can fight here and now. Our future is now. Our future is bright. Our future is gleaming. It is here. We live in the light now. We don’t need darkness drowning us. Come out and join us.

Family Day 2009 Canada

Save the Date- June 6 and June 13, 2009.

Don’t miss out on this great opportunity. We are working to set up Family Day in a city near you.
Each day will be tailored to the needs of the Chapter and families in the region. Options include: videoconference presentation by an international HD expert, local events and workshops, practical or fundraising events, and tips and tricks for engaging your local community.

For more information please contact Wayne Greenway at

wgreenway@huntingtonsociety.ca or 1-800-998-7398, ext. 33

Gene disease 'recreated in lab'

US researchers say they can now watch genetic diseases unfolding in the laboratory after finding a way to make large numbers of affected cells.

http://news.bbc.co.uk/1/hi/health/7791283.stm

Pioneering Research Into Rare Childhood Condition Gets Underway At Sheffield Children's Hospital, UK

An amazing JHD stidy. One of the few. This is what they need to save these kids.

http://www.medicalnewstoday.com/articles/133765.php

New HD Clinical Trial

This is a great opportunity to join a great study. Countdown for the cure.

http://www.huntington-study-group.org/Portals/0/HARTPressReleaseFINALDec22008.pdf

New Research Project

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.

If you are interested in participating in these groups please contact Jo Anne Watton at 1-800-998-7398, ext 32.

KIDS with Huntington disease (HD)

The Society proposes to launch this program over the next two years by contracting with experts in the fields ofchild psychology, health and development to assemble materials, explore arange of delivery options and design, produce and test a comprehensiveprogram to introduce children to HD. This program would originate in Albertaand move to major centres in Western Canada with the intent of developing amodel that can be utilized on a world-wide basis. The focus of the program is to develop resilience, promote understandingreach children who are isolated and create networks to foster friendships.This specific type of programming will help children who are struggling andwill help those who are doing well to do even better. Those who are doingwell will be invited to take leadership roles in a variety of creativeprojects that will be designed to help strengthen the program and buildleadership skills along the way. KIDS for HD Program This two-year national program will begin in Alberta, Canada, focusing onjunior high and high school-aged students (14-16 and 17-18 years of age).Children living with HD are clustered around the Calgary, Red Deer andEdmonton areas. They include children who have the HD gene and willinevitably show symptoms during their lifetime (about 600) and those withoutthe gene whose parents either have manifested HD or are at risk of gettingthe disease (another 1,200). Initially, the program will focus on young people who often feel isolatedand where HD may begin to have a greater impact on their healthy transitioninto adulthood and when they are beginning to make decisions about their ownlife and future. Based on the feedback received from the youth and thesuccess of this program, the pilot has the potential of being utilized topioneer different developmentally appropriate programming for youngerchildren. The intention is to harness the power of web-based strategies tosupport strategically timed face-to-face programming. This program will be designed to assist youth in understanding the nature ofthe disease and the importance of connecting to community, and to assistwith facilitating their participation in events with peers of similarexperience. The two most important components of building resilience in kids-- to help them cope with unusually stressful situations -- is to help thembuild a solid relationship with at least one person and to createopportunities where kids can feel challenged and experience success.

Youth for HD Activity Day Saturday February 28 2009 - Camp Chief Hector YMCA- Exshaw, Alberta 10am -5pm - Free Transportation can be arranged -

Register by Feb. 16.

For more infomation or to register please contact: Wayne Greenway 1-800-998-7398 or wgreenway@huntingtonsociety.ca

More Updates

I updated my research page. I added that bit about Gary.

More Updates

I added the info about Gary onto my HD info page.

Live Life

Today I have been emotionally fine. I have little symptoms. Just a bit of dancing. We might move into the disabled house on April. We meet with the owner on Tuesday. We will see then. Tomorrow I see Doctor Walker. My meds aren’t slowing me down like we thought. Trevor goes to a Special Olympic Volunteer meeting. They are looking for volunteers. Some of us Special People wil be there. Iwill be there to tell them what they are doing for us. I am one of them. I had fun. I volunteered at the Gleaner’s. They are moving everything around. They need more space. They got another building. They are moving around the food bank. They are making more room for toys. That’s where I am at. I also had fun day at Rythmitic Gymnastics. It was fun. These are my favorite days. My brother Gary is now taking Creatine. I can’t start until March. I am still glad to be your daily hope. You can’t live like you were. Scared of dying. Living in fear. I have fought to save you. I have to fight for hope for you guys. It is still not easy. I can never give up and let these people take over and tell you there is no future. I will be bed ridden , if it came to that, still giving you hope. I can’t give up and let evil win.

Clioquinol Inhibits Action Of The CLK1 Aging Gene, May Alleviate Huntington's Disease

This is a huge breaktrough. It can cure HD. Countdown for the cure. It is here. Everyday we get closer. Huge news.

Clioquinol Inhibits Action Of The CLK1 Aging Gene, May Alleviate Huntington's Disease

http://www.medicalnewstoday.com/articles/134583.php

Genetics For The Public: First Annual Consumer Genetics Show In Boston June 9 -11, 2009

Genetics For The Public: First Annual Consumer Genetics Show In Boston June 9 -11, 2009

http://www.medicalnewstoday.com/articles/134802.php

SPCA

Trevor has a laptop to fix tonight. One of our friends needs help. Today I called the SPCA on our neighbors. They had four dogs squished in one seat. They were keeping these four big dogs in the truck. They were squished in there. It was horrible. They were in the for nine hours a day. No one wanted me to talk to them. I had to do it for the dogs. My Dad is on my side. We had Zena poisoned by someone. My family understands that there are horrible people that can mistreat them. My Dad was worried that they would find out and get revenge. They are sneaking those dogs in here at night. There are no big dogs allowed here. They are getting kicked out next month. I feel good calling the SPCA. My meds are working today. I have been doing great. HD free today too. Let’s celebrate life. Let’s celebrate the good here. The good in life. Don’t look at the bad. Look at the good. This is your time to shine. Live and love your life. Live and learn too. Learn how to live again. Learn how to love again. Learn to forgive again. Life is a process of learning and accepting. That is what we are here for.

Brain & Nervous System Health Center

A good article on how you can keep your brain fit.

http://www.webmd.com/brain/features/keeping-your-brain-fit-for-life

CVC Launches Program to Help Patients with Huntington's Disease

CVC Launches Program to Help Patients with Huntington's Disease

http://caringvoice.org/november2008.htm

Mechanicsville, VA, November 2008 Caring Voice Coalition ("CVC") is pleased to announce a new program to assist patients diagnosed with Huntington's disease.CVC is a national non-profit organization that helps patients afflicted by certain diseases afford costs-such as copayments and premiums-related to the prescription therapies for their diseases. CVC's assistance has previously been limited to patients affected by Pulmonary Hypertension, Alpha-1 Antitrypsin Deficiency, Idiopathic Pulmonary Fibrosis, and Chronic Granulomatous Disease. The new program expands CVC's assistance to include patients with Huntington's disease, an inherited disorder that destroys brain cells involved in emotions, intellect, and movement. "As medical costs continue to soar, CVC is working diligently to help underinsured patients afford costs that would otherwise prevent them from beginning or remaining on therapy," said Pamela Harris, CVC President. "We are excited to expand our programs so that we can help patients diagnosed with Huntington's disease."============================================

Caring Voice Coalition8249 Meadowbridge RoadMechanicsville, VA 23116Tel: (804) 427-6468Toll-free: (888) 267-1440Email:

CVCInfo@caringvoice.orgWebsite:

http://caringvoice.org/

The Caring Voice Coalition, Inc.© is a national 501(c)(3) non-profit, charitable organization, established in 2003 to serve the comprehensive needs of individuals affected by serious, chronic disorders. Caring Voice Coalition serves people with the following chronic conditions: Alpha-1 Antitrypsin Deficiency (Alpha-1)Chronic Granulomatous Disease (CGD)Huntington's Disease (HD)Idiopathic Pulmonary Fibrosis (IPF)Pulmonary Arterial Hypertension (PAH) If you are affected by any of these disorders and believe you would benefit from one or more of our programs, please contact us! At the Caring Voice Coalition we understand that the diagnosis of a chronic disease often results in situations and emotions that deeply impact a person's life. Visits to the doctor, complex treatment regimens and periodic hospitalizations make daily life harder to manage. Financial burdens caused by medical appointments, insurance costs and therapy co-payments may strain already limited financial resources. And feelings of depression, fear, and anxiety may make it hard to manage day-to-day needs, to plan and to hope for the future. To a person living with a life-threatening chronic disease, these challenges are often all too real. Caring Voice Coalition seeks to empower our patients to meet these challenges through comprehensive, effective programs and a knowledgeable, caring staff. We value our reputation as a responsible, responsive organization with a unique, holistic approach to improving the lives of our patients. Our current programs include: Financial Assistance Program

http://caringvoice.org/program-fa.htm

The Caring Voice Coalition Financial Assistance Program provides financial help to eligible patients. Caring Voice Coalition may pay a portion or all of a patient's share of cost under the patient's health insurance plan. A patient can receive financial support through one of our grants programs listed below. Insurance premium assistanceInsurance co-payment assistanceMedicare prescription drug assistance Insurance Education and Counseling:

http://caringvoice.org/program-ie.htm

Caring Voice Coalition established its Insurance Education and Counseling Program because we recognize that health insurance issues for chronically ill persons are often very complex and difficult to resolve. That is why we provide specialized insurance assistance and guidance to our patients. The following services are available: Identifying sources of coverage;Assisting with enrollment;Reviewing and explaining benefits;Mediating problems and complaints; andPreparing and submitting appeals. Our Reimbursement Specialists will work with you to contact the parties necessary to gather information and resolve insurance problems and disputes. This includes insurance companies, employers, government agencies, and any other entities involved in ensuring coverage for a life-sustaining medication or therapy Patient Support Program:

http://caringvoice.org/program-ps.htm

Our Patient Support Coordinators will identify public and private programs and services that may be of benefit to you. Our goal is to connect patients and their loved ones with services that will make life a little easier-emotionally, socially, and financially. Whether you are newly diagnosed with a chronic illness or were diagnosed years ago, our coordinators are ready to help. Common areas of assistance include: Providing educational materials that explain the patient's disease and how it develops; -Referring patients to support programs and services designed for people using a particular medication or drug therapy; -Identifying peer support groups and other programs which may provide emotional support; -Completing a "Benefits Check Up" screening, which lists state and federally-funded programs under which the patient may be eligible for assistance; and -Locating community social service programs that may assist with living necessities such as shelter, clothing, food, and transportation.

TO APPLYhttps://secure.caringvoice.org/apply.aspx

See above link for all of the information needed to apply.To be eligible for assistance, an applicant must meet the following criteria: -The applicant must have one of the specific chronic diseases supported by CVC;-The applicant must be a US citizen residing in the United States or a permanent legal resident of the US;-The applicant must have health insurance with a monthly insurance premium or monthly prescription co-payment that he or she cannot afford;-The applicant must be on an expensive FDA-approved therapy related to the disease;-The applicant must not be receiving or eligible for other assistance; and-The applicant must demonstrate financial hardship.

No Fear

I got two spares today at bowling. I always have fun there. I do not feel my med change yet. Mood swings, anxiety, fear, and paranoia. Having hallucinations. No fear anymore. No fear about HD. No fear about dying. No fear. Don't be scared. HD is not scary anymore. No one has to die anymore. It won’t happen. The researcher’s are doing their hardest to help us with that. We have to join studies to help them out. We have to be proactive for our health. We have to believe in miracles. They can happen. Miracles can cure us. They work on our side. Don’t give up the hope. Never give up the fight for light. Fight for your life. Every day you fight for your life. Wake up and fight again. The fight is always worth it. We will always win. Never lose hope in a future without HD. Live and fight all of the time. That is all we can do. Fight HD. Make it back up. You don’t own us. Go away HD. Let us live our lives the way we want.

Life Line

We got our first disability check today. I had my life line set up up Saturday. It has a button that I wear 24/7. If I fall I can hit the button and a call will go through to their call center. Trevor is first on the list. Alice is second, and Terry is third. We got an expensive one. Home support pays for most of it. It has reminders. It reminds me of my meds. When to brush my teeth too. I love having it. Today I have had a really bad HD day. I have fallen a few times. I can’t balance. No matter how sick we get. It happens. We have good days and bad days. Keep moving. Keep fighting. Never give up. Don’t think of it. Think of hope. Think of life. Think of the cures right before our eyes. The dreams are there. Never lose sight of that future. We don’t have to die. HD will be cured. We are too good not to be saved. It is a struggle. In the end it will be worth it. Life is precious. Learn to live with HD. Accept HD. Live for the cure. The generations will stop when together. Imagine that life. That is now. That is then. We can get there. Sooner than later.

Using Lasers To Destroy Amyloid Proteins

More info about that laser. Amazing idea.

http://www.medicalnewstoday.com/articles/134761.php

More Updates

I updated my Care Giving Page about my LifeLine.

Genetic diagnosis 'requires skill and precision'

PGD Article. It is an explanation of what it is.

http://www.independent.co.uk/life-style/health-and-wellbeing/health-news/genetic-diagnosis-requires-skill-and-precision-1243082.html

Meds

We filled out the papers for our disabled housing. I am not surprised that Tertrabenzine has severe side effects. They were just amped to push it. I wish it was never okayed. I warned my family about it. My HD Team in Calgary did not think it was safe either. Do your research. Whenever Gary is out on a new med or me. I do research. Today they upped my Zyprexa. It is my sedating med. I see Dr. Walker next week to see if I can live on it. Last time I was so sedating I could hardly do anything. I had to file an animal rights complaint today. These neighbors of ours, leave four huge dogs in a tiny truck. No air. No heat. Nothing. They have one seat. They sit there 4 hours a day. It made me sick. I think animals are nicer then we are. I could never do anything bad to our little boy Lucky. Isn’t Dimebon amazing? That Dimebon webcast. It is one my family is really interested in. There is a New HD Social worker in Calgary now. She might be able to get a hold of my Neurologist. That is how it used to work. I miss Loretta. She was a very amazing lady. She was missed when she retired. As these cures come and treatments life gets more fulfilling. Plan your future without HD. This is not false hope. These things are happening. This is real. Hope is here to stay. Hope has been here. No one knew how to find it. I am glad to bring you your daily hope. It will never stop. This is real. Hope is here to stay. Hope has been here. No one knew how to find it. I am glad to bring you your daily hope. I will never stop. You can’t stop fighting either. Don’t stop living.

Tetrabenazine is Bad - From someone in a support group

I tried to warn people about this drug. I though the advocates were just pushing to get anything out there. They did not care about the side effects. I felt bad blogging against it. Now I know that I was right. Do you research before you put anything in your body.

My step-relative (a recent widow who lives alone) was prescribed half
a tablet twice a day (25g total) Tetrabenazine by a neurologist in
October 2007. Her dose was increased at the annual visit to the
neurologist in Oct 08 to 37.5g and a month later to 50g daily. We
were at no point given any written information about the drug and
were reassured that the only side effects were "rigidity" and that
she would only be taking half the "maximum dose", so would be fine.

Not having had any previous experience with HD my husband and I
assumed that any symptoms displayed by our relative were caused by
HD. However, by December I was very concerned that my relative had
become very sleepy and tired, lost her appetite, "couldn't be
bothered" to prepare and eat even simple food, lost 3 kg in a month
(having dropped from 65 kg to 56 kg since Oct 07), felt more restless
(akathisia), obsessively anxious, and so on.

So, I did what I wish I had done in October 2007 and googled the
internet for information on TBZ. This was most helpful:
http://www.xenazineusa.com/files/PI.pdf. I was shocked to read for
the first time of the potential side effects and warnings to report
various symptoms to the patient's doctor. I decided that, since
Christmas and the school holidays were coming up and I wouldn't be
able to keep an eye on my relative so easily, I would drop her down
half a tablet and take her to her doctor in the New Year.
Fortunately, tetrabenazine doesn't build up in the body, so within 24
hours she was feeling much better, i.e. less sleepy and more hungry.
I was really cross that I had been left to work this out for myself
and not warned to look out for changes as the dose increased.

Fortunately, I am able to interpret much of the medical language in
the TBZ information due to studying psychology in the past. My
understanding is that the maximum dose for MOST patients is 50mg, but
SOME people may need up to 100mg if they have a "metabolic genotype"
which means they don't absorb it as well. To be given more than 50mg
the patient must have a bloodtest to see if they have this genotype.
Judging by my relative's severe reaction to 50mg, she does NOT have
this genotype, so the neurologist's argument that she would be fine
on 50mg because she could take up to 100mg is a load of old cobblers.

We are going to discuss the drug with my relative's doctor (although
he did not prescribe it) and ask whether she should reduce the dose
further to see whether some of her continuing symptoms are in fact
side effects of TBZ, but this would mean her chorea will worsen
again. A dilemma.

The cure is here. Dimbon Web Cast

Medivation Announces Participation in 27th Annual J.P. Morgan Healthcare Conferencehttp://news.prnewswire.com/DisplayReleaseContent.aspx?ACCT=104&STORY=/www/story/01-08-2009/0004951726&EDATE=SAN FRANCISCO, Jan. 8 /PRNewswire- FirstCall/Medivation, Inc. (Nasdaq: MDVN) today announced that David Hung, M.D., president and chief executive officer, will present at the 27th Annual J.P. Morgan Healthcare Conference on Wednesday, January 14, at 10:00 a.m. Pacific Time at the Westin St. Francis Hotel in San Francisco.Dr. Hung will provide an overview of Medivation and its clinical development programs for Dimebon for Alzheimer's and Huntington's diseases and MDV3100 for prostate cancer. A live audio webcast will be available on the "Events and Presentations" page of the "Investor Relations" section of the Company's website at http://www.medivation.com./A replay also will be available for 30 days following the live presentation.About MedivationMedivation, Inc. is a biopharmaceutical company focused on the rapid development of novel small molecule drugs to treat serious diseases for which there are limited treatment options. Medivation aims to transform the treatment of these diseases and offer hope to critically ill patients and their caregivers. In September 2008, Medivation entered into a global agreement with Pfizer Inc to develop and commercialize Dimebon for the treatment of Alzheimer's and Huntington's diseases.With Pfizer, the Company is conducting a broad Dimebon clinical development program, including a pivotal and confirmatory Phase 3 trial, known as the CONNECTION study, in patients with mild-to-moderate Alzheimer's disease. The program also includes additional trials planned to begin this year in Alzheimer's disease, as well as further development of Dimebon in patients with mild-to-moderate Huntington's disease. In addition, a Phase 1-2 clinical trial of MDV3100 in patients with castration-resistan t (also known as hormone-refractory) prostate cancer is ongoing. For more information, please visit us at http://www.medivation.com./SOURCE Medivation, Inc.

Countdown for the cure ends now. This takes away years of HD damage. It is real. Hope is here now. Plan your future.

Live

Last night I thought aliens were going to get me. Today I had not a lot of HD symptoms. I have been anxious. I had fun at Rythimtic Gymnastics. They want Trevor to coach Softball. Two people dropped out of gymnastics. Now there is three of us. I had a good day at the Gleaner’s. I cleaned a lot of toys. I have not slept good in four days. This weekend I go back to work and look after Molly. I work 3 hours and get 25 dollar’s a week. Not bad. Alice is visiting my Brother and Sister in law. I am needed more now. Live that is all we can do. Do the best with what we have. Learn to love the life we have. The life we could have. It is a dream filled with hope. Live that dream. That dream is here. We don’t need to deal with out hope now. You know that it is possible. Our future is bright and shiny. We can live in the light. It is a choice. We have the light of love for life. The love for our future. Our future is now. Our future is then. Live for today. Live for every day. Live for every second. Enjoy life. That is what life is for. Live with the cure. Live for the cure.Countdown for the cure is real.

Vitamin B12 Linked to Brain Shrinkage

Vitamin B12 is an essential water-soluble vitamin which helps maintain healthy nerve cells, red blood cells and is also needed to help make DNA, the genetic material in all cells.

http://www.healthnews.com/medical-updates/vitamin-b12-linked-brain-shrinkage-1737.html

Malnutrition and eating difficulties

Eating difficulties, which affect the ability to bite, chew or swallow food, can lead to dehydration and malnutrition. Helen Crawley looks at symptoms, complications and treatment.

http://www.nursingtimes.net/ntclinical/2009/01/nutrition_and_eating_difficulties.html

More Updates

I added the Vit B12 to my HD Information Page.

Meds Not Working

I had a bad fall and hit my head. I am okay though. My meds are having issues. I am angry, irrational, and paranoid. I am having mood swings. I am going to talk to my Doctor here to talk about them. Tomorrow I get to volunteer at the Gleaners. I am also back at Rythmic Gymnastics. I missed it. It was good to see my special friends last night. Trevor showed up. They love him. I hope he can volunteer too. In the summer they start Tee Ball. I want to do that too. Keep yourself moving. Don’t stop moving. Don’t stop what you do that is psychical. It will keep you healthy as long as possible. You have to live and fight HD every way you know. Fight. HD is your enemy. Every day is a fight again and again. Don’t give in one step. Don’t let it take control. This is your life on the line. Every life breath is worth fighting for. Fight. Live and love your life. It is worth fighting for. Fight for the right to smile. The right to be happy. It is all a fight. We can win. This is the fight we can win in the end. There is a cure that has our name on it. In fact there are several. We have the strength to fight. We are HD warriors. Every day is a new struggle we can win. Don’t lose and let it take you.

LifeLine

I am finally getting my lifeline. It attaches to my phone. I also attaches to my shirt. If I fall or something is wrong it will help. It will also remind me to take my meds. They are setting this up this weekend. I got invited to one of my Special friends Naomi’s house. Trevor and I are going. He starts his old job this Monday. The layoff ends there. I had fun bowling. Last night I had a hard time sleeping. I had a twitch in my leg. My HD is bad today. I have bad chorea. Denial is not a safe place. It is a hole that we can’t see out of it. Come out and see the light. My family was never in denial. Since I was six I knew about HD. The fact I had a fifty-fifty shot of getting it. It is no good to stay there. Accept HD. Everyone here knows I have HD. I tell everyone I know. Denial leaves you trapped and scared to show your true colors. Your true colors are what makes you, you. Don’t be ashamed. We are not HD. We should not be judged. The fear in our head tells us that we are being judged. Get outside. Don’t let the fear stop you in your tracks. Go outside. Live. You will feel bad when you are trapped. It would not to be good to live in fear and not live. In the end what do you have? Nothing. Don’t let it hinder you. We are the ones that make or break our lives.

Ethyl-EPA research report published

A good article about this treatment. Countdown for the cure will end soon.

http://hdlighthouse.org/showUpdate.php?p_articleNumber=608

Weight loss in HD

A good article on how we lose and why we lose weight.

http://hdlighthouse.org/showUpdate.php?p_articleNumber=609

Long term tetrabenazine use

I was never for this. Apparently in long term use it gets less useful no matter how high the doses get.

http://hdlighthouse.org/showUpdate.php?p_articleNumber=605

Hope

On Sunday I was too sick to go and work. I had stomach flu. I did not want to give it to everyone. Alice knows I have no immune system. It is good. This week Special Olympics start up. The Gleaner’s also opens too. I have a fun week ahead of me. I got bowling tomorrow. Home support is all healthy. The first Nurse was here today. I am glad they are ok. I have still been healthy this week. No more halluncations either. We are getting disability this month. We got hardship status. The Government is paying for our rent. They thought we need the money. We are getting 1250 dollars. Keep your head up. Chin up. The worst is here. It will only get up from here. This is a lesson about living. We get stronger every day we deal with HD. Every day we fight like there is no tomorrow. All of the fight will be worth it. We will have the sweetness. It is one word. Hope. That makes us. That is the only word we need. To make our life better. Never lose sight of the hope. Keep it there. It will protect you through all of the hard times you go through. Hope will heal us. Heal us from HD.

Supportive care for patients with Huntington's disease and their carers

This study explored the needs of patients with Huntington's disease and family carers and their views on support services provided by a community-based unit.

http://www.wearehd.org/do/articles/425

Another Award

I won a TS silver award. It is my number 85 in total. It was another international award. These are all for you too. Everyone that has HD themselves or has it the family. You could be married too. Everyone that experiences it.

What they said:

The sites are judged on content, functionality, graphics and usefulness to the general public. We spend a lot of time reviewing sites and not all make the grade. You have done a great job, keep up the good work!

Airplane Ride

Trevor got me an airplane ride over the Creston Valley. It is an hour flight. We go over the mountains. See some of the animals. Trevor thought it would be nice. He wants to see if I can handle planes. We plan to go to Cuba. Yesterday was my first day at work. I started at 5:30 to 7:00. They need someone to cover shift change. Also Alice is going to see Chris and Jan, my brother and sister in law. She does not want her to be alone. I was trained by the distress center on how to help people with anxiety. I know that. I will be there to keep her company. Today I am symptom free too. The day come and goes. Trevor might have a new job. There is a logging job here that pays 17 dollars an hour. Way more than the last one. I will be working on the weekends. Starting at 5:30pm-7:30pm. I have been having panic attacks. Don’t live life in fear. Live life in the light. Get outside. Enjoy life. Don’t hang out in the cold. You need warmth to survive. Forgive yourself and live. It is not our fault that we have HD. There are things that HD causes. It is not us. It is the disease. We are people. We are still human. We should get treated thusly. Live with reverence for life. Live for life. Live for hope. Hope makes the world. Hope is the world. The world is ours to make. Ours to live. Live the way you chose too. Never lose your excitement. Live with energy. Fight for energy. Fight for enjoyment. Make it what you want. HD should not tell you can’t do something. Don’t close down.

More Updates

I added Ways to communicate on my Care Giving Page.

More Updates

I updated My Story about my new jobs.

Back to Nursing

The past two days I have had good HD days. No symptoms. I am dancing a bit though. Trevor will dance with me. We joke about it. That is the only way to handle HD. Make it fun. My family has always had a sense of humor. It helps. I am going back to Nursing. Alice's Mom has severe Alzheimer’s. Alzheimer’s and HD were my specialty. I worked and looked after both. My Grandma who helped raise us died from it. She got it early. Molly has been getting more and more anxious. They need someone to look after her. Alice is the head Nurse. She is too busy. We are working the details tomorrow. I would come for as long as I thought I could handle. At 5:00 pm- 7:00pm. I worked in two Alzheimer’s wards. They had we also had to switch when I was 16. They wanted me to experience the whole hospital. I went to all three wards. Every day I would start off and see my Mom. You should of seen her face when she found out I was a Nurse there. I never thought I could do it again. I am happy to do it again. It always makes me feel better to help everyone. Everyone here don’t give up your life. Don’t think of it. Remain fighting and having fun for as long as you want. Work, live and play. Do it every day. Every day is a new start. Every day celebrate what you can. If my brother Gary can work once every week, we all can. Learn to live. You have to strength. Don’t give up. Go to work. Live right. Live for the fight. Live for your life.

Contact the Obama-Biden Transition Team for HD

Contact the Obama-Biden Transition Team for HD

Earlier this month, Barbara Boyle, with a delegation of HDSA advocates, met with the staff of key Senate leaders (Senators Kennedy, Baucus, and Majority Leader Reid) to discuss how comprehensive healthcare reform can include the HD community. Now it's time to share our message with the transition team. Visit the link below to provide your input. A template for your comments is provided below.

http://change. gov/page/ s/healthcare

I applaud your efforts to address the many problems of our existing heath care system, and as someone affected by Huntington's Disease, a rare, genetic and fatal neurological condition, I'd like to comment on some problems currently facing members of my community that can and should be addressed in any comprehensive reform.Improving care at the end of life, maintaining incentives for orphan drug development, and eliminating pre-existing condition exclusions and lifetime caps on benefits would greatly benefit people living with HD, as well as many other disease communities.Given that many with HD receive health care only after a disability determination, however, I want to specifically bring to your attention the need to address the severe gap in coverage facing disabled Americans. The Social Security Administration' s medical guidelines for determining HD-related disability are hopelessly outdated and until disability listings are revised and the SSA can accurately and efficiently process applications, disabled Americans will continue to go without coverage. Additionally, the 24-month waiting period for Medicare eligibility for disabled persons must be eliminated. This waiting period, coupled with the existing disability policies, delays essential medical care and often causes severe financial hardship for our families. As you are likely aware, rare, genetic disorders are often marginalized, and I appreciate this opportunity to discuss how healthcare reform can include people living with HD.