Metoclopramide [Reglan] drugs

It won't be surprising for some HD families to read about the February 2009 FDA's black box label requirement for Metoclopramide [Reglan] drugs because of the potential of Tardive Dyskinesia in long term use. If you read the drug's info, three of the conditions listed for people who shouldn't take Reglan are those with a: history of depression, Parkinson's disease or a movement disorder and epilepsy or other seizure disorders. Yet this drug is prescribed by physicians for HD patients who experience stomach problems [GERD], projectile vomiting, the healing of esophageal ulcers, intractable hiccups, etc. Many HD patients who have been prescribed Reglan have experienced not only symptoms of NMS and/or TD but hallucinations, paranoia, suicidal thoughts, severe anger outbursts etc.. Because of this, every time I hear of someone being prescribed Reglan I send them to the information on the link below the news article. Metoclopramide brand names: Octamide, Maxolon, Metoclopramide Oral Solution, Reglan including Reglan Tablets, Reglan Oral Disintegrating Tablets, and Reglan Injection FDA Requires Boxed Warning For Metoclopramide Drugs - Thu Feb 26, 2009http://www.reuters.com/article/companyNews/idUSN2629346520090226 and others Excepts only: WASHINGTON -(Dow Jones)- The U.S. Food and Drug Administration said Thursday it was requiring manufacturers of metoclopramide, a drug used to treat gastrointestinal disorders, to add a boxed warning to their drug labels about the risk of developing a neurological disorder. Manufacturers will be required to implement a risk evaluation and mitigation strategy, or REMS, to ensure patients are provided with a medication guide that discusses this risk. Recently published analyses suggest that metoclopramide is the most common cause of drug-induced movement disorders. Another analysis of study data by the FDA showed that about 20 percent of patients in that study who used metoclopramide took it for longer than three months. The FDA said development of tardive dyskinsia "is directly related to the length of time a patient is taking metoclopramide and the number of doses taken." The FDA recommended that treatment not exceed three months because the risk of the movement disorder was "directly related to the length of time a patient is taking metoclopramide and the number of doses taken." "The chronic use of metoclopramide therapy should be avoided in all but rare cases where the benefit is believed to outweigh the risk," said Janet Woodcock, the director of FDA's Center for Drug Evaluation and Research.

Moving

Today we did a lot of moving. We got all of the boxes at our new condo. They are glad they had us move in there. They know Trevor’s parents. They know that we would be good tenets. I can’t wait to never have to walk up four flights of stairs every day. Tomorrow and Friday we have more moving. Trevor gets the weekend off, so we can rearrange everything. We are really, lucky to have that place. We are very thankful. They are glad to have us too. I have to drink lots of water and to help my bladder retention. I stayed up all night in pain from that catheter. Voiding every 10 minutes. Things can get better. Look for those stars. The stars guide us. Follow those. The stars will always be there to guide us.

Water Retention

Today I went to the hospital. We thought I had another bladder infection. Went too the hospital. They thought I was having an allergic reaction. Scanned my bladder. They found out it was full of urine. They think I am having Water Retention Problem. That is why I have the pain. They drained me through a catheter. It was painful and still hurts now. I just got out of the hospital. They are referring me to a Urologist. They want to find out what is causing it. We are going to fully move in on Friday and the net is coming there on Sat. I won’t blog for one day. We will see if I have time to blog while I am moving. Continue fighting. Fight all of the time. Giving up is not the answer. Never consider it. Never give up. We need to fight. We always will fight. Nothing will change that. The fight is ours. The fight is for our life. Our life is on the line. Fight all the time.

Special Needs Travel

The thought of escaping winter’s icy blast is an appealing one, particularly since Mother Nature decided to blanket most of Canada in snow early this year and is showing no signs of letting up.Booking a plane ticket and arriving just a few hours later to the feel of warm breezes and swaying palm trees is a dream for many. But for those with special considerations, like Huntington’s disease, buying that ticket is the easy part. It’s the thought of organizing a vacation where wheelchairs and medical concerns are part of everyday life that can make it difficult to imagine a dream getaway.

Organizations like Accessible Journeys are making it easier for those with special needs to travel the world. Specializing in “wheelchair travel” since 1985, their website (http://www.disabilitytravel.com/) offers a wealth of information about accessible lifestyle vacations, including lists of healthcare professionals willing to act as travel companions, equipment rentals worldwide, opportunities for group tours and cruises, and accessible property rentals in countries like Jamaica and France.Despite the tongue-in-cheek name, Gimp on the Go (http://www.gimponthego.com/) takes a serious look at the needs of travellers with disabilities. This specialized online travel publication includes articles and reviews by its readers, a look at various travel destinations, tips for travellers ranging from wheelchair beach access to renting an accessible van, the latest happenings in the travel industry for those with special needs and a full gallery of holiday photos that are guaranteed to inspire the urge to travel. A page full of travel resources covers every topic imaginable.

The Globetrotter Club (http://www.globetrotterclub.com/) considers itself “the world specialist in tourism for the physically challenged travelers, their family and friends.” The online travel agency offers flight and hotel bookings, car rentals, travel insurance and passport information, along with a great deal of information on escorted tours, safaris, cruises, health and wellness getaways, and other unique vacation ideas.

Transport Canada operates a website called Access to Travel (http://www.accesstotravel.gc.ca/) that aims to make travel easier and more enjoyable for Canadians with disabilities. It offers a list of transportation options for travel across the country and more specific local transportation in various communities. For example, the local transportation link will take you to a map of Canada where you can choose a province and then a city. The city page will provide a list of accessible transportation options. There’s also a list of accessibility options in Canada’s airports and a number of travel-related links, including the Ontario March of Dimes (http://www.marchofdimes.ca/), an advocacy organization for people with disabilities. They organize a wide range of trips throughout the year, including short day trips to visit local attractions, a summer holiday program and weekend getaways.There are many opportunities for special needs travel, both across Canada and around the world. For those strictly looking for accommodations, there are companies like Access Victoria (http://www.accessvictoria.com/), providing accessible vacation suite rentals. Access-Able Travel Source (access-able.com) is another site brimming with unique travel information. Emerging Horizons (emerginghorizons.com) specializes in accessible travel news through its print and online magazine, and Access Anything (http://www.accessanything.net/) opens a world of opportunity with its “Go Anywhere Do Anything” attitude.Just a brief tour around the Internet is proof enough that the options for special needs travel are vast. Now the only question remaining is...where would you like to go first?

Juvenile HD

http://www.huntingtonsociety.ca/english/uploads/Juvenile_HD_-_Wilcox_family_FINAL.pdf

I am so Excited to Move

I am so excited to move. Tomorrow we get the keys for our new condo. I saw Hilary and her family when she was at Swan Valley, where I look after Molly. She left us some flower plants and a Hyde a bed. We told if she can’t take everything, we have no problem receiving it. She needs to move into a manor across from her husband. Her kids didn’t need them either. They no longer could keep Rick home. I like both of them and their family. I met her at the Power Of Attorney conference. She met Trevor and I, and felt sorry for us. I told her that, I am going to get cured though. Today is Trevor’s Dad’s birthday. We took him out for dinner. I can’t believe that we are getting something good. If you wait patiently things get better. You just wait. This is Trevor and I’s year. It is about time we had some good luck. We had to fight for everything. Keep up the fight. It is always worth it. Trevor and I had periods where we thought that things would not get better. Things do get better. We have disability now. We got this condo for 280 dollars a month. Wait and good things come to good people. Be a good person and karma will back you.

Sara Voyzey worte this about her JHD Sister

Sara Voyzey worte this about her JHD Sister.

She's Having a Hard Time
We all wish she would get better,
It's like the cure is wrapped in a lost letter.
We can tell she hurts so much,
But she never pipes up.
She's having a hard time,
like lemon and lime
squeezed into the eyes
this might bee our last goodbye
She's just having a hard time
She is sueezed into a corner
and she can't get out
It's just plain horror
and we just might have to go
She's having a hard time
like lemon and lime
squeezed onto the eyes
this might be our last goodbye
She's just having a hard time
She goes to school,
and she gets hurt because everybody calls her a fool
It's just like her heart is all burnt out
and she just wants to shout:
" I'm having a hard time
like lemon squeezed into the eye
this might be my last goodbye
I'm just having a hard time,"

More Updates

I added more Care Giving Tips.

HD fundraiser

HD fundraiser will be at Greenfield Mills address: 10505 E. 750 Howe, IN 46746 June 19th. and 20th. June 19th: Car Show and fundraiser dinner. June 20th. Hotcakes for Huntington's pancake breakfast, Walk and Old Mill Festival.

Sunshine

I had lunch with my Head Nurse Julie. They are trying something new with my meds. I often sleep in and have problem sleeping. I will be taking my morning meds at 7, when Trevor wakes up. The next one will be at 11. They are spreading my Epival and my night meds. Epival gives me energy. The other one make sleepy. We are packing like crazy. Trevor got the internet on next Saturday. It might be a couple of days where I can’t blog. Life is what you make it. Make it good. Make it memorable. Make it fun. Live it like your is your only life. We get one life. Must live it and remember that. Remember to live and just look towards the sun. Out of the rain. Let the rain disappear. Let it get sapped up. Let it give you energy. Energy for life.

New Link

I added Neurological Health Charities Canada to my links page. I also got rid of the Health Blog Contest banner.

Join us at the Huntington Society of Canada to share your hopes and dreams for 2009!

Join us at the Huntington Society of Canada to share your hopes and dreams for 2009!
Our “One for Me, One for HD” campaign will inspire you to share one personal goal and one goal for our urgent cause that calls both of us to action - a cause we are devoted to! And you’ll be able to see what others in the HD community are energized and passionate about!
Through “One for Me, One for HD” we are reminded that each and every one of us can fulfill dreams for ourselves and for others, which enriches our own lives and the lives of those around us. Only by making personal commitments and stretching ourselves will we make the greatest strides forward.

https://dnbweb1.blackbaud.com/OPXREPHIL/Link.asp?link=327449

HSC Partnership

The Huntington Society of Canada is working in partnership with other neurological health charities (Neurological Health Charities Canada (NHCC)to advocate for increased knowledge and support for individuals living with a neurological disease. Recently, a joint meeting was held with the NHCC and representatives of the Government of Ontario to begin to develop a strategy to improve supports and services in this province. Meetings between the NHCC and key government departments, lead by the Department of Health will be happening in the near future to flesh out next steps.

http://www.neurohealthcharities.ca/

Consultation on Neurological Conditions in Canada
In Canada, there is a lack of information about the extent and impact of neurological conditions (brain and nervous system diseases, disorders, conditions and injuries). This makes it difficult to plan effective policy, programs and investments. Neurological Health Charities Canada (NHCC) is committed to working towards filling this gap in information, and we are asking you to take a few minutes to express your views on what type of information you feel would be important to collect.

NHCC is a collective of organizations that represent people with chronic, often progressive, brain and nervous system diseases, disorders and injuries in Canada. Collaborating with the Public Health Agency of Canada (PHAC) and the Canadian Institutes of Health Research (CIHR), we are considering what information is needed about the frequency of occurrence and the impact of diseases, disorders and injuries of the brain and nervous system. Your input is very important to us.

Please visit:
http://www.surveymonkey.com/s.aspx?sm=FEQ_2bes8Jm0Sys0JPC0zJNA_3d_3d
This questionnaire will be accessible on-line until February 27, 2009.
Thank you for your participation!

Research in Toronto and Surrounding Area

Individuals are invited to participate in a new project in the Greater Toronto Area that requires people to participate in focus groups. These groups will include people who are pre-symptomatic, in the early stages of HD and spouses/partners/caregivers. Researchers aim to produce an early-stage rating system for HD. The Unified HD Rating scale is used to quantify the severity of HD, but was not designed for all aspects of the very earliest phases of the disease. Contribute to this groundbreaking work being spearheaded by Canadians.

The focus groups will be held February 28, 2009 at the Timothy Eaton Memorial Church, 230 St. Clair Avenue West, Toronto

10am-12noon: Gene +, no symptoms
1pm-3pm: Spouses, Partners or Caregivers
3:30pm-5:30pm: Gene+, early stage

Register in advance with Adam Singer
Adam Singer, Clinical Research Assistant
905.472.7082 x229
asinger@movementdisorders.ca

Rhythmic Gymnastics

Today at Rhythmic Gymnastics two of us showed up. It was still a good time. We got to play with everything. My favorite is the ribbon. I love using the ribbon. It is the best. Next week there is no Rythmitic Gymnastics. I had a good morning at the Gleaner’s. We are running out of toy donations. We were there for an hour and a half. The recession means people hold on to stuff longer. They are rearranging the Gleaner’s. They have two buildings now. There is grocery store that offers people to buy $12.00 packs to give to the food bank. We aren’t running out of food. This rescission has had a lot more people looking for food and cheap things to buy. You can get both there. The Special Olympics needs funding. I am helping. I will be doing a car wash. I also told them about the HD garage sale we had and how it worked. I will see if Trevor will join us. There is a Valentines dance and Pot Luck on the 28th. All of my Special People will be there. We hope we can go. Live your life to the fullest. Never doubt the fact you make your life. You can shape it. Let dying be on the back burner. That word does not describe us or our lives. It is word people use. We live and fight just to not hear that. We live in the truth now. We know that there is a future. There is a fight. There is life. Just live your life to the fullest. Then you have already won.

More Updates

I added more to My Story.

DNA instability in replicating Huntington's disease lymphoblasts

DNA instability in replicating Huntington's disease lymphoblasts

http://www.wearehd.org/do/articles/440

Cures

Hope you guys had a good Presidents Day. Trevor got a promotion. They are giving a chance to have a forklift license. They would get paid five dollars more, with that. I am having a good HD day. Friday I meet up with the head Nurse at home support. We move in FEB 28th. Spent half of the day packing. Even home care is helping. I can’t wait for no more stairs. Trevor is going to repaint and fix our apartment before we leave. We want our damage deposit back. We also get our pet deposit back. Lucky never trashed anything. Never forget the hope that you live every day. The cures are coming. They are calling out to us. We can see. We can see them. Plan your future. Plan your life. Make it fun. Laugh HD away. Have fun out in the sunshine. No darkness invited. You are the one that says no to that. Try to fight depression. Everything is worth a try. Don’t be afraid to live. To step outside.

Genetic link to depression and HD

A good article about the genetics of depression and HD.

http://www.wearehd.org/hdlighthouse/discussions/451

Hope

I am fighting this balder infection. I bowled good. I got the highest average I had. There is a Valentine Special Olympics dance on Feb 28. We might go. We will be moving so we do not know if we can go. Last time it was so fun. We got Trevor to dance. He hates dancing. I had a good HD day. Not a lot of symptoms. We get to move four days earlier. We need hope in the darkest times. We need hope at all times. We can’t live without it. We can’t survive without hope. It is what it comes down to in the end. Live in the hope, or struggle in the hopelessness. No one deserves to be hopeless. Always fight. Miracles swill happen. Don’t stop believing that. They can happen. We will get cured. Sooner than later. It will happen. All of the generations will stop. Every day the hope builds. Countdown for a cure. They are real. They are happening now. They are here. It is our time. It is all our time.

Happy President's Day

Enjoy your President's Day. Have fun my American Friends!!!

Another Bladder Infection

I have another bladder infection. I noticed when I urinated. I am in pain. We went to EMERGE here. They caught it in time. I hate getting these all the time. I just got over my ear infection. Now a new one. Trevor and I have been starting moving. We are so exited. We can’t believe that we got in. It is mainly Senior’s. The Lady that runs it used to look after 3 HD patients here. I can’t wait to get no stairs’. Four stairs’ is way to much. Trevor to took me out to dinner. It my favorite restaurant. They remember me there. One of the sweet waitress’s is a veggie. I like it cause they have the best veggie burger here. I had to eat some meat. Trevor is manly, manly who loves meat. I am getting sicker everyday. Accept it and move on. We have to accept the worse, before it gets better. Accept HD. It is real. We have real personalities . We are real. We are still here. Don’t forget us. Don’t forget our lives. Never let go of the true memories. Just treasure us. We aren’t HD. We are real. We are people. We live. We learn. We accept all things.

Happy President's Day

Get pampered - and raise money for a good cause

A PERTH College beauty therapy student is offering Fair City men and women the chance to get pampered - and raise money for a good cause. Anne Bebbington has roped in 11 of her classmates and arranged a fundraising day at the College to raise money for the Huntington's Disease Association. From 10am to 4pm on Thursday, the public can visit the charity beauticians who will show their skills in return for donations. There will be spaces available on the day, but anyone wishing to book an appointment for the variety of treatments on offer should call the college on (01738) 887 649 in advance.

As well as the pamper day, Anne has undertaken the challenge of cycling from London to Paris to raise money and awareness for the disease, which is caused by a gene and leads to nerve damage in the brain.

Fall

Today I had a bad fall. I really hurt my back. I was dressing and fell on one of our buckets. I hurt my back. It has been cut a little. I had to use my life alert again too. It was painful. Our little boy Lucky is going to get his shots and his teeth cleaned on the 20th of this month. We are going to visit Molly my Grandma-In-law tomorrow. Trevor wants to bring her a rose. I am having a bad HD day today. The neighbors are still keeping me up so late. Look forward to life. Look forward to a future without disease. Look forward to a future full of health. It will happen soon. Countdown for the cure will stop soon. We will have it. We have three good cures for next year. It is going to happen soon. Hope for the best. Always have that gleam of life in your eye. Never lose the brightness. Don’t go into the dark alone. Bring your head up and look. Denial is a bad thing. HD is here. We have it. We also have hope now. We are moving into a Seniors’ Condos, we are lucky to get one.

Fun Day

Today they did not need me at the Gleaner’s. Gerry has been sick for 2 weeks now. I I had fun doing Gymnastics. We got ten people there now. A lot of people quit. Now we have a lot more. It is good to have tons of people. I have another HD free day. On Tuesday we have an appointment with Julie Gyles. She is the head Nurse at home support. We can’t wait to move. It can’t come soon enough. I always enjoy Thursdays. Enjoy life. That is what we live for. Hope is what we face on a daily basis. Always fight for hope. Hope makes the real difference on our lives. We know that this is temporary. No one else has to die. HD will not claim us. We will fight hard. Fight HD away. Fight it all away. We can fight. It is a hard a battle. We can win though. Don’t give up the fight. Don’t think of it. Just believe. Believe a hundred percent. Trevor has a surprise for me on Valentine's Day. I never thought in a million years I could get married.

Happy Valentines Day

Take your life back

Today I had a better HD day. Tomorrow I am so excited. I get to go the Gleaners and Rythmitic Gymnastics. On Tuesday bolwing was cancelled. The neighbors have kept me up all week. We can’t wait to move in a more mature condo. We had dinner with Trevor’s Dad. Ran into Godmother and her Mom. I was glad to see them. Celebrate life. Celebrate living. The future is now. Let us celebrate our future HD free. It will come sooner than later. The cure will come. We just have to wait. Trevor’s Mom is in Mexico. I am going to look after Molly while she is gone. She needs a familiar face. Live and learn to fight HD all ways. Don’t let HD ruin your life. Take it back. It belongs to you. Take your life back..

Fight

I have been getting sicker the past 2 weeks. Everything is worse. I can hardly dress. I have a hard time eating. Swallowing and chewing. My depression is gone. My meds are working right now. I am a lot happier with them. I finally got an appointment with Dr Suchorsky. I am hoping Gary can get an appointment too. I am having a hard time talking. Just keep on living. Live on. Fight on. We can win. We can fight this disease. We can fight anything we can set our mind too. We have the strength inside. As I get sicker. I will never stop, doing this. I can’t let anyone go without hope every day. I could not stomach giving up. As I get sicker I want to share about my life more. More people need to hear about the real HD. Learn to love your life. Learn to live your life. Fight for your life. Fight for your happiness. Fight for the light.

Shock

I have been getting really sick. I am having a hard time dressing and eating. I am tripping and hurting myself. Trevor keeps telling me he will never leave me. He will always love me. Our condo will cost us 280 dollars a month. When we found that we were in shock. We can’t wait to move in. Trevor is going to give me a workout room. I can do my HD exercises. We had to call the police on the neighbors here. They snuck in the attic and said things about messing with wiring. We can’t wait to move into the mature condos. No parties, no load music. I accept the fact I am getting sicker. It is the truth. We are all going to get sick. It is how we deal with it that makes the difference. Accept HD for the good and the bad times. They will come and go. You will be happy. You will be sad. It is life that can take us to those points. We have to fight to make sure those sad days don’t last. Take control. Live your life it the fullest.

One for Me, One for HD

Join us at the Huntington Society of Canada to share your hopes and dreams for 2009! Our “One for Me, One for HD” campaign will inspire you to share one personal goal and one goal for our urgent cause that calls both of us to action - a cause we are devoted to! And you’ll be able to see what others in the HD community are energized and passionate about!
Through “One for Me, One for HD” we are reminded that each and every one of us can fulfil dreams for ourselves and for others, which enriches our own lives and the lives of those around us. Only by making personal commitments and stretching ourselves will we make the greatest strides forward.

35 years ago, a small group of insistent volunteers took action that transformed the lives of everyone connected to the HD community. Their personal goal – to connect and unite HD families in the shared struggle with a cruel and misunderstood disease – became our cause, and people in Canada confronting Huntington’s finally had a place to turn for compassion, understanding and hope.

In honour of this 35th commemorative year, one of our generous supporters has offered to provide us with an extra 35% on every dollar that we raise together from now until the end of June. Please, read on about our recent accomplishments and give to our “One for Me, One for HD” campaign!

Today, we continue to take action each and every day to end HD. About HD research, 0ur Research Council Chair Dr. Ray Truant, recently said: “It’s happening at a very fast pace. I’ve never seen anything in science move this fast”. Dr. Truant used this analogy: “You think, if I have to dig a 10-kilometre trench with one of those plastic shovels, it’s going to take five years. But as you’re working on it, people are giving you bigger and better shovels, and at some point someone’s going to give you a motorized backhoe. We don’t have the backhoe yet. Right now we’re working with some really nice shovels.”

And at the heart of what we do are our HD families. We are developing a brand new program, Youth for HD, focused on the unique needs of children growing up with HD in their family and in their uncertain future. Young people are instrumental in building this program, ensuring that Youth for HD is a real and honest reflection of what kids experience and need. Like all our programs for the HD community, it is a dynamic partnership between our families and HSC.
Help us celebrate 35 years with a special gift today. This exciting gift incentive is a fantastic opportunity to join our monthly giving program, Our Champions of Hope and give an enduring gift to the fight against HD. Every dollar you give every month will be matched by 35% from now until the end of June, so please, take a moment and make your gift today!

Share your hopes and dreams for 2009 at https://dnbweb1.blackbaud.com/OPXREPHIL/Link.asp?link=323318

Protein Shields Mice from Parkinson's

If results of a new study conducted in mice can be applied to people, Parkinson's disease and other neurological conditions may have met their match.Researchers from the University of Wisconsin-Madison have found boosting levels of the naturally occurring protein Nrf-2 completely shields mice from a chemical known to induce Parkinson's disease. The protein is made by brain cells called astrocytes, which researchers believe help support neurons, the cells that actually carry nerve signals. When neurons die, they cannot be replaced, which leads to the devastating effects of neurological conditions."Neurons have always gotten the Academy Awards, but astrocyte dysfunction is becoming a central theme in neurodegenerative disease," study author Jeffrey Johnson was quoted as saying. "If we can figure out how to fix a sick astrocyte, or even prevent it from getting sick, which could offer profound protection against almost all neurodegenerative diseases."In this study, mice who were genetically engineering to have extra Nrf-2 genes produced about twice the normal level of Nrf-2. When researchers injected them with a chemical called MPTP, which is known to kill neurons and cause Parkinson's, the extra Nrf-2 was 100 percent effective in warding off the chemical.Johnson says he and his colleagues expected to see some reduction in cell death due to the treatment, but were surprised at the totality of the results. "This complete abolition of toxicity was far greater than we expected. It was striking."Tests in humans are still at least a couple of years away, but the researchers are already looking for candidate drugs that could boost Nrf-2 production in human astrocytes. If suitable drugs are found, it could mean effective treatments not only for Parkinson's disease, but also Alzheimer's disease, Huntington's disease, amyotrophic lateral sclerosis, and other conditions involving the brain.

Find and Compare Nursing Homes

This will help you find all of the best Nursing Homes in the US.

http://www.medicare.gov/NHCompare/Include/DataSection/Questions/SearchCriteriaNEW.asp?version=default&browser=IE7WinXP&language=English&defaultstatus=0&pagelist=Home&CookiesEnabledStatus=True

More Updates

I updated my story.

Fixed my Blog

They fixed my blog. I am staying here. Thanks Google.

Siegfried & Roy: 'The Magic Returns'

I wished I loved in Las Vegas now. There was a former Siegfried & Roy magician that ran the IT section at SAIT. On the Orientation he went and did tricks for us.

http://abcnews.go.com/2020/story?id=6807154&page=1

Siegfried & Roy

You never know what tidbits you'll find reading HD headline stories. This morning I read about Siegfried & Roy will be doing a Vegas performance March 6th to benefit brain diseases. Curious, I clicked on the link and the brief article mentioned "Portions of the proceeds from their one and only comeback performance will benefit the Lou Ruvo Brain Institute. The institute is a study and treatment center for neurological diseases like Alzheimer's disease, Parkinson's disease, and Huntington's disease." That led me to find out this wonderful facility is planned to open in Las Vegas sometime this year that will help families with neurodegenerative diseases!!The LRBI has partnered with the Hereditary Disease Foundation. Located next to the World Market Center one newspaper article I read said the Institute will provide one-stop shopping: there would be a person, the contact person, friend of the family, that going to provide them with the kind of supporting, loving services they need. Some of those service could include financial and legal guidance for families dealing with these diseases as well as help with social services. Top neurologists from around the world will treat patients with thing like Alzheimer's, Parkinson's, Huntington's, and ALS. But they will also have an eye on the future. "We have no cures for these ailments and the goal of the Lou Ruvo Brain Institute is to pull some of the top researchers in the world around these diseases in order to cure and ultimately prevent them altogether," Institute president and CEO Dr. Zaven Khachaturian explains.So keep this facility in mind for any HD families living in Nevada and also research news! The one fault I found on their website.......under Resources they don't have a link to the HDF or any HD information.....yet!!Lou Ruvo Brain Institute

Keep Memory Alive Foundation

http://www.keepmemoryalive.org/
888 W. Bonneville Ave.Las Vegas,
NV 89106Phone: 702-263-9797/
Fax: 702-260-9797
Toll free phone: 1-888-268-9797
Scientific Advisory Board

World Rare Disease Day is being held Feb. 28, 2009

World Rare Disease Day
http://www.rarediseaseday.org/
Rare diseases are chronic, progressive, debilitating, disabling, severe and often life-threatening. Information is scarce and research is insufficient.People affected face challenges such as diagnosis delay, misdiagnosis, psychological burden and lack of practical support.Many rare disease patients are denied their right to the highest attainable standard of health and continue to advocate their need to overcome common obstacles.

The main objective of Rare Disease Day 2009 is to raise awareness with policy makers and the public of rare diseases and of their impact on patients’ lives.
Other main objectives of Rare Disease Day are to:
Raise awareness on rare diseases
Strengthen one voice of patients
Give hope and information to patients
Bring stakeholders closer together
Coordinate policy actions in different countries
Inspire continued growth of the awareness of rare diseases
Get equity in access to care and treatment
Awareness raising events will take place in each participating country. To find out what is happening in your country, click here.

There's not much going on in the US this year, except the below, but this is new........and it's up to people affected by a rare disease, such as HD to spread the word!!!

USA - National Organization for Rare Disorders - NORD Video
http://www.rarediseaseday.org/country/result?country_id=US
This video was created for the 25th anniversary in 2008 of the U.S. Orphan Drug Act. NORD and its Rare Disease Day Partners are very happy to join hands with EURORDIS, the European National Alliances, and others around the world in focusing attention on rare diseases as a public health issue. We look forward to helping make Rare Disease Day an annual global event.
Who can take part?Anyone who wants to - everyone’s invited!
Rare Disease is open to the general public, patient organisations, NGOs and the rare disease community at large. Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS at international level and National Alliances at national level. The more participants, the more impact for the Day, and the more we’ll be able to do for patients.

Trevor is the best adovocate

Today we got an email form Dr. Suchorsky's office. They never ever sent anything until we went to complain now we have an appointment in June. the office emailed and admitted the problem. We are giving my Dad their mail. He can't get a hold of them either.

Metropolitan Ballroom

Metropolitan Ballroom
Golden Valley, MN

Be sure to mark your calendars for Saturday, February 28th because you won’t want to miss this FABULOUS event! Silent & live auction, entertainment, dinner, key-note speakers, awards & fellowship!

Contact Information: Leigh Peterson, Regional Director
7362 University Avenue, Suite 212Fridley, MN 55432
lpeterson@hdsa.org
763-502-1407

The ACR-16 trial is enrolling participants

A huge research study to join. Countdown for the cure. A huge breakthrough. Join it.
http://www.hdlighthouse.org/showUpdate.php?p_articleNumber=616

CAG Repeate Article

This article teaches us about CAG Repeats and what they mean.

http://www.hdlighthouse.org/showUpdate.php?p_articleNumber=611

New Possible Cure

They can work with body temperture now. This is huge. Count down for the cure.

http://www.hdlighthouse.org/showUpdate.php?p_articleNumber=614

Life Line

I had another bad day. I had to use my life alert for the first time. Ear infections affect my balance. I feel three times today. I hurt every body part. I feel on my head. I did not get wounds though. I was lucky and did not severely hurt anything. They called Alice. Trevor was at work. Alice is my secondary. She came over to check. I had already hard time getting up. I have lots of bruises. I am getting sicker. My chorea is worse. I can’t sit still a lot now. Today I did not have my 360 view. The rest of my day has not been bad. I had one nice person who wanted me to write something for her MySpace. Her husband is my age. She is Trevor’s age. Both of us have early onset. I can’t find a lot of families like mine. It does not matter how sick I get. I will never stop blogging and give you guys hope. Can’t stop. I could not do that. You can always count on me every day. Our new condo will be 280 dollars a month! We were in shock when we found out the price. We have one person that gave us benefits. She thinks we should get more. She will help us get more money. She works for BC disability. Alice wants to take me to México. I have never saw the world. I am excited. Things are going great. I felt bad when she ditched us. I felt like she was my Mom. Forgiveness’ is something we should practice.

2009 World Congress on Huntington’s disease

Sept. 12-15, 2009Vancouver, British Columbia, Canada
Vancouver, Canada will be the host city for the 2009 World Congress on Huntington’s disease. Vancouver is one of the world’s premier meeting and convention destinations. Incredible mountains, sparkling ocean and a cosmopolitan flair make it perfect for work or play. The 2009 WCHD will be organized by a committee led by Dr. Michael R. Hayden and Dr. Blair R. Leavitt. Huntington’s disease (HD) researchers, clinicians, and members of the HD community from around the world will convene to participate in the meeting. The scientific program will feature presentations on recent advances in genetics and the disease mechanisms of HD, recent approaches to developing experimental treatments, and the latest findings from clinical trials.
The 2009 Congress will also include presentations by caregivers and international HD organizations, with sessions on social, historical and ethical perspectives of HD. We look forward to seeing you in 2009!

http://www.worldcongress-hd.net/html/2009/intro?wchdsid=fe569e61d552d9d386de628160290af6

Bad Day

Today was a bad day. I almost flooded the place. I was doing dishes and left the tap on. I finally heard it and got the water in time before any damage occurred. I got deflated by my Grandpa, my Mom’s Dad. He told not to raise my hopes on cures. He told me that my hopes are bunk. I was in tears. I don’t like feeling like I am going to die. I don’t like that. I was in tears and called my Dad at work. My Dad always knows the right words. I always call him when I am upset. He told me that all that matters, is that you believe it yourself. I know my Dad knows that we are going to get cured too. My Dad called me later and checked to make sure I was okay. I cheered up and walked Lucky. Went to gymnastics too. He just thought that maybe Grandpa was having a bad day. I went to the Gleaner’s. None of the toy people were there, so I went home. I got half of my blog up. I am excited. You will love this one. That cure that they found in 2007, will be here soon. They had a huge conference in Toronto. That is where they talked about it. It was supposed to come out 5 years ago. It cured the HD 100 percent. That is huge. Even thought the fight is huge, the fight for hope is always worth it. Gary is excited about it too. I always call him and give him hope. Don’t listen to people that are telling you there is no hope. There are no cures. That is what my Dad told me. It is true. Tonight we find out how much we are going to pay for our condo.

Alzheimer's Disease: Tips for Maintaining a Normal Life

This is an amazing article. Lots of ways to fight dementia. It is good for us too.

http://www.webmd.com/alzheimers/living-with-08/memory-tips?ecd=wnl_day_020509

Dialectal Behavior Therapy

I want to tell you guys how I fight HD mental symptoms. I use Dialectal Behavior Therapy. Also known as DBT. These skills are made for people with borderline personality. They work for us. It is based on some Buddhist qualities. Here you go…These skills are practical. They take all lot of practice to get perfect.
http://www.dbtselfhelp.com/

Got Condo

The past three days I have been really sick. My anti- biotics have given me an upset tummy. I have pain in my ears. I have fevers too. I could not go bowling yesterday. I am hoping to see if I can do the Gleaner’s tomorrow. I want too. I still am struggling with depression. It is going to kick in two weeks. I have been HD free the past two days. Some amazing news, we got that disability condo. It is huge. We were so happy, the women that helped us get it was in tears. You should of seen some of the slummy places we lived in Calgary. We are still in shock. It is like what we pictured for a dream house. They have a huge wheel chair friendly kitchen, has huge wheel chair patio. The patio looks over a beautiful dog park and a creek. The bathrooms are huge. They have grab bars. They have huge closets. Huge storage. They have a lift in the bathroom. Next to the couch they have a bar that you can use. There is a beautiful ramp that can lead to the dog park. They have a free wheel chair, just in case I ever need one. We are so grateful for this. I was in tears too. They told us that they found us at the right time. The person that lives there, I met at that power of attorney conference. It was nice to run into her. I meet my neighbors’. There is one sweet woman that has MS there. She has a poodle. Lucky’s friends will be in the same neighborhood too. We both move on March 1st. We just have to get rent figured out tomorrow.

Puking

I am throwing up and sick and I will blog tomorrow.

Another Award

I won a gold award.

Got Condo

We got that condo. They loved me and Trevor. They could tell I needed it bad too. They were sweet people.We are seeing it tomorrow. We move in there on March 1st. We are so excited. I took a serious tumble three days. My landlord Karen came to help me. The dance was fun. I had fun with my special friends. I got Trevor to dance too. He hates that stuff. He enjoyed himself too. I am really having a hard time eating. I got another ear infection. This is number 7. I wish I had an immune system to fight it. I have nothing. I noticed it a bit last night. A lot today. I took myself to see my Doctor. I am taking antibiotics. I am also taking ear drops. My Nurse’s will help me with both. They upped my anti depressants because I have been struggling with depression for the past two weeks. We have to fight harder,. When hard is not enough. We have to fight harder. Get stronger. We need strength. We need control. We can gain control. We are always fighting to control ourselves. Do everything possible to do that. To go there. Fighting is the only way to win. Winning is what we hope and dream for. It is possible. We can win.