Thursday, October 30, 2008

HD Marthon

Sponser her to help us find a cure. A lot of people do this for us. I think it is amazing.

Gymnastics

I have a hard time focusing my eyes. They shift from side to side. I am meeting a lot of people as one of the site leaders of WEAREHd.org. It is a good place. Some scared people are there. It is horrible. I feel so bad for not starting this mission early and saving a lot more lives. I did have to get my symptoms first though. Like a true hero I just wish I could have been here longer. I am glad to give you guys your daily hope. When people send me emails I usually blog and help them. I did a blog post inspired to help people. If you want any problem or to find out how I dealt with it, email me. I will blog about it. I had fun volunteering at the Gleaners. They are having a Christmas sale of all the toys I worked on. I work with the toys. Everyone wants to work there. It is fun to play with toys. Tomorrow we are going to a Halloween party. I did Gymnastics today. We learned the rope routine that we are going to do locally in Cranbrook. It is a fun routine. We also do rope, ribbon and skipping rope. We listened to all of the music to get the feel for it. I was confused for a bit. Today no HD. No chorea either. There is a program here that would pay for my supplements. Right now we can’t afford anything but ensure. Don’t disable yourself. Move. Fight HD. You can hold it back longer, if you keep running. Keep pushing. Keep going. Fight. Don’t stop. Don’t let HD win. Fight for your life.

Happy Halloween


Calfornia Stem Cells

This is our cure. They soon will be curing us with these stem cells. Countdown for the cure will happen soon. It is all uphill here. We are all saved. No one else has to die anymore.

Wednesday, October 29, 2008

Two more awards

Someone loved my site they gave me two awards. One is a you touch my heart award. The other one is a beautiful site award.

Accpet HD

I am having another HD free day. No chorea today. It is weird. Usually I have a lot. I found out that MSG kills our brain cells. Sea salt can build them. We are going to get everything tomorrow. Don’t eat Chinese food. I just came back from a home care meeting. Accept HD. We have it. We see it. The only way to accept is to see. Accept that you or your loved ones are getting sicker. Accept it. HD is an illness that affects the whole family. Open your eyes and see what is going on. That is the only way to be at peace. Peace and harmony is your life. Being in denial won’t help a person get there. Don’t hide. You can’t be happy living in fear. You can’t be happy being scared. You don’t have to be afraid any more. Accept HD. Everyday I accept the fact that I am getting sicker. I am going to get sicker. We are all getting sicker. We just don’t have to die anymore. Not with the solid research that is here. By me accepting HD. I have moved on and live my life. It feels good to get out of denial. Get right out.

More Updates

I updated the HD info page.

Petition To Get US Social Security

Sign this and get social security to add us to their definition of Neurological Diseases.

Tuesday, October 28, 2008

Gaining Weight Again

I visited our Doctor today. We need more paper work to give to the government for disability. I gained 1.5 lbs in 2 weeks. I look a lot healthy since the last time the Nurse saw me. I had fun bowling. I did good today. I was very confused today. The past two days very confused. I am having a hard time typing and spelling now.My chorea was bad today. It is getting worse. I have a friend form Bowling that lives in the same apartment building. We are going to visit her. My friend that has the stem cell info. She just had spinal surgery and just got home. She has the info about getting all of that done for free. Love your life. It is temporary. Then the cures come. That is the end of all the torment this disease is going to have. We have that care conference on Nov 4. I can talk to my Neurologist to see if we can still do the COQ10 study. We went up there Trevor was switching jobs. They would pay for our gas if we went to Calgary. It is 5 hours from here. We could not afford it other wise. Live with the hope. A cure will come. Get into as many studies as possible. The creatine one has not started yet. The researchers can’t do it themselves.

Monday, October 27, 2008

Bowling

As far as that article goes about telling your partner. I told Trevor the first date we had. Everyone I dated I would tell right away. I felt it was wrong otherwise. Today I am having a bad chorea day. It is mainly HD free day. Tomorrow I get to go bowl. I am hoping to get another over 100 game. I could not believe it. I was in shock. I love Special Olympics. I get so excited when I get to go. I love it. I love the people. I have made tons of friends there. I can’t believe there is an almost blind person there and doing it. Enjoy your life. Accept HD. We have it. It will make us into a figment of us. We are still the same people. Don’t forget about us. We have feelings. We have a disease that we did not chose to have. We have to accept this disease. We need to get better. Sitting in denial will only make things worse. Own up to HD. Own up to life. Own up the power of knowing. The power of knowing how to look after ourselves. Accept and move on. Get hope for the first time in your life. Know real hope for the first time. Accepting it is the only way to get to that happy place. Where would you rather be, happy or sad?

Adapting To Life With The Risk Or Reality Of Genetic Disease: Genetic Counselors Suggest Ways To Help Patients Cope

A study that found out we cope with testing.

Sunday, October 26, 2008

Another Award

I won an enchanted award. It is number 65. I have the most awards of any person in a short time. Believe in yourself. Don't let anyone tell you you can't do anything. You are not useless.

Saturday, October 25, 2008

Offical Everyday Hero Video

I got sent the official we care video. I put it up into on the Everyday Hero page. They gave me some We Care badges to put on here. They had more people with clips then they could fit in. They loved my bit and put it in. I am having an HD free day. I am missing that little Kaiden. I don’t know why we have to lose our young ones. It is not right. I would give up life so they could live. I would give up my life for Gary too. I love HD. I love my life. Last time I talked to him he was depressed again and fearful. I tried to cheer him up. Told him about the hope for us. Trevor’s Dad might have a tumor. Now we have to deal with that. We find out next week. We are hoping it is malignant. All of this is too much for me to deal. We have to learn to deal with loss. It is part of life. We lose people. They want us to move on. They want us to live. Not to lose our lives in loss. Live our lives. We never forget. We can live. We will never forget. I will never forget my Mom. She wants us to move on and live. Why would someone that loved us, wants us to suffer. They don’t want us to lose yourself in grief. Come out and don’t lose yourself.

Friday, October 24, 2008

Support My Journey


I am running my very first half-marathon for my mother and my aunt and others who can no longer run because of Huntington Disease. When you see how Huntington Disease takes people long before their time, destroys their lives and the lives of their family members for 10 or 20 years before death, you wouldn't wish HD on your worst enemy.
Please sponsor me and help make a difference. Currently, there are no survivors of HD but with your support, we can provide crucial support to families dealing with HD and invest in research to find treatments and a cure.

Live with me

I am having an HD free day. I love helping out on WEAREHD.org. I welcome people that come there. I like welcoming them. I think everyone should go there. It is a good support there. I enjoy going on there and saving people. That is me. I have a super saver syndrome. I have to save everyone. That’s why I started this. To save as many people as possible. Show people there is hope with HD. It is real. It is here. There is hope now. I seriously feel so bad for not starting this sooner. I had to get sick first before I could of done it. I need to show some symptoms. Tell everyone what is like. To show people that hope is there. When I found out I was an everyday hero, the email I sent said I was just doing what I thought is right. That is what all heroes say. We get a cause and we feel. We feel what is right. We feel what needs to change. They are on Canadian TV. All lot of people nominated this for me. I had no idea that this could happen. Let’s show everyone that hope is here for good. Use everything I have taught you to live. If I save one life, that’s all that matters. We don’t have to go to sites that tell us we are going to die anymore. We know life now. It is hard to live when you are told that again and again. That instills itself upon us. Fight it way. Your lives means nothing to them. Every one of you means so much to me. Every life is important. The difference is I have HD. They can’t understand what those fear tactics do to us. I know.

Hoopathon

The 11th Annual HDSA Hoop-a-thon is dedicated to the memory of Josh Keeler (1987-2007), a lifelong friend of B.J. Viau and a supporter of the Hoop-a-thon event.

Thursday, October 23, 2008

Hope

I talked to my Dad and we have that power of attorney worked out. No way Alice can take control and do something crazy. I left a message with the Cranbrook BC airport. I think they might fly people to California for free. Stem cell testing in California will start sometime sooner, hopefully. It will take awhile to get all of this worked out. I was sick today. I had as bit of an upset stomach. Been moody. Up and down. The cure is here. Countdown for the cure will end soon. We can stop counting. We can live HD free. All of it will be worth it in the end. Hold on to the future. Hold on to the future. Hold fast to your dreams. Plan what you are going to do after we get cured. Plan. It is here and now. The future is now. Here and now. Plan your life. Live your life filled with hope. Fill your heart full of joy. Fill your soul full of a future without HD. The generations will stop.

Added a Everyday hero Page

I added an everyday hero page with my video on it.

Memorial Fund

A memorial fund started by this poor woman's sister. Like Jenny's.

Wednesday, October 22, 2008

New Award

I won a Visionary award. Thank you so much for the honor. It is hard to find awards. I have won most of them.

the power of attorney conference.

We went to the power of attorney conference. We learned a lot. It was really good. It was 4 hours long. We need to come up with a will. We want things worked out. We are working on a living will. Trevor will be my representive. My Dad will be my alternate represantive. Karen will be my monitor. We have to call them and make sure they want to be. My Dad is there in case Trevor gets sick. Karen is there, they need some to support my Dad’s decisions or it won’t be legal. We have to get in touch with a lawyer here so Trevor can take care of my health care, when I get to sick to make decsions on my own. I was the only person there who wanted to live. I am 25 years old. Why would I want to die early? I want all treatments. Feeding tubs. Palliative care , if I get there. I want them to extend my life as much as possible. I will be emailed this info from the great lady that had the meeting. I will put it up as soon as I get it. Trevor found a caregiver group that he will be joinng. They make sure he won’t burn out. I wished I had this when Alice made the decisions for me and ditched me in the hospital. This way my Dad and Trevor and my Dad’s girlfriend can do what’s right. Without making these, it is so hard for caregivers to get the right to look after when you get sicker, and can’t make decisions any longer. It is good to plan ahead. Never forget the happiness life can bring when faced with such odds. We have everything set against us. Yet we come and live. We are the strong. We have the courage to take on the world. To take our life back. We can fight and take our life back. Fight for your future. Fight for our cures. Fight every day. Fight with the same strength of ten men.

Tuesday, October 21, 2008

Bowling

Poor little Kaiden. The kids in my family are dying way too early. It is not good. Why? I had an HD free day. Symptom free. Some days are like this. I did really great at the Special Olympics. I scored my first over 100 game. I can’t believe it. Some of my friends went and did competitions’. They did good. They have been bowling since they were like 6. I love it. It is so much fun. I am still loving home care. All of them are great. It is Lucky’s two year birthday. Our little boy is turning 2. We are going to throw him a party. Celebrate your life. Celebrate your future. Celebrate your life again. Learn to take joy in your life again. Learn to love your life again. Learn to see your future. Plan your future. Plan your dreams. Don’t let HD get in the way of dreams. Next summer I get to see the coast for the first time. Do what you want. Live your life how you want. It is your life. Live it. Accept it. We have HD. Don’t let it take away our fun. Don’t let it take away your future. Fight for you right to have fun. Live your life. It is all we can do.

Monday, October 20, 2008

No hate

The past couple of days I was really sick. Really bad chorea. Twitching like crazy. Brain fog is getting worse. Trevor is crazy worried. Yesterday I was really angry for no reason. I am getting so sick so quickly. Everyone around me knows and worries. I don’t. I actually try to not worry. Trevor’s Mom has totally shut me off. Trevor and I have a saying that is Daddy’s are better than Mommies. His Dad and my Dad will never stop supporting us. She will call everyone but me. Trevor is getting sick of it too. She expected me to call her and plan something. I can’t remember anything. That is why home support is here. She is going crazy. We are actually concerned that she has Alzheimer’s. It runs in their family. I hope my Trevor does not get it. Don’t live your life full of hate. Don’t live your life full ill feeling against anyone. Let everything go. Fade away. Soon as I found out I had HD, I let all of the hate go. I hated half of my family for the way they treated my Mom. I had to forgive all of them. I loved her no matter what. Let it go. Life is too big for hate. Life is too short for hate. Let it all slide. Become a better human. Join humanity. I believe we should have to join hand in hand with one another. Live your life in peace. You will get many awards. I am now active as site leader in WEAREHD.org.

Stem Cell Treatment blog

This blog was started about a little sick boy. He went to China and got treated and cured. They will be looking for people to work on with HD patients in California. I believe a 100 percent in this. I think that program that you can got to for free is at the Cranbrook BC airport. I started an email and find out a hundred percent. The cure is here.

Sunday, October 19, 2008

Relay for life

I am going to do the relay for life for my cousin’s little boy. I will have a candle for him. I can't believe I am an everyday hero. I still am in shock that I am a hero. I just thought I was doing what felt right to me. I fought hard to fight the “false hope spreader” tag. This is not false hope here. This is real life hope. This is me saving lives. Everyone life that I made less scared or suicidal, that is all I want. I will never stop this. Never think about stopping helping people. I will not let people live without hope again. Don't feel afraid of having or living life. Don't be afraid of the symptoms. I do sometimes get fears. I have a hard time eating in restaurants. We are quick to judge ourselves and be scared. It is natural to be a bit afraid. It is not natural to shut yourself away in fear and scared. If you have it, don't ever be afraid of going outside. Don't shut yourself out of life. Fight for a life worth living. Most of the time it is us that notice these problems and not other people. Don't judge yourself. Don’t shut yourself out. Come out and play. Live with me. Don’t be afraid to live with me. There is sunshine instead of darkness. I hope I can show all of you that. Don't live in fear. Your life matters.

My Everyday Hero Acceptence Video

Friday, October 17, 2008

Cheer up

Today Trevor is taking me to Cranbrook for dinner and a movie. He is trying to cheer me up. I can't blog today. I am going to start doing relays for life in the little guys memory. I will have a candle in his memory. Two of my Nurses had breast cancer. Next summer I will be on Shirley's team.

Thursday, October 16, 2008

Mourning again

One of my Cousins, Lisa who did not get HD. She tested negative. She had a 6 year old boy die of leukemia this week. The last time me and Trevor saw him the little guy was in remission. My Dad did not tell me about it. I take death really hard. Once again I am giving something that is the best thing I ever got. As a hero. I am giving my eveyday hero honor to little Kaiden. I will never forget you.

Added WEAREHD.org

I added it to my links. I swore I had it up there. It is now.

YES, WE CARE! Campaign

I got this email today. This is so unexpedicated. They found me. Honored all of the good I am doing to help everyone I can. I get to make a video for them. I am still in shock. Everyday I enjoy helping and saving people. I have HD. I am you. It is in my family. I am you. I am telling you for the first time. It is okay to have HD. You have never heard that before.

Hi Heather, We are excited to recognize you in our new YES, WE CARE! Campaign that honors everyday heroes, like you, who put themselves on the front lines in the quest for a healthier, happier world by spending their time and putting their hearts and souls into helping others in need. We’re particularly excited to have this chance to honor you, for dedicating your time and writing to help people improve their health and well-being. We've nominated YOU as one of our Everyday Heroes! As part of the YES, WE CARE! Campaign, we are creating a special video to highlight some of the amazing stories we’ve heard that demonstrate that caring for others is alive and well today all over the world.

Scripps Research scientists define structure of important neurological receptor

They figured how the psychological symptoms of HD are caused.

Antioxidants Could Help Huntington's Disease Sufferers

This is a huge breakthrough.

Wednesday, October 15, 2008

More Updates

I updated My story.

More Updates

Added another photo page.

Hope

We have a meeting next week to learn about power of attorney. I am going to post everything I learn on here. Then we have the care conference on November 4. I get to ask about the studies. I could not enter because of Trevor’s new job. We can see if they still need us. Today I almost fell in the tub. I am getting more and more confused. Trevor spent the whole day at work worrying about me. He sees me getting sicker every day. He can’t stand it. He loves me. I told him once again to believe in the cures. I am the girl that he waited his whole life for. I am sick. It is going to get worse before it gets better. He is ultra worried because I am getting scary skinny again. He is again think of becoming a Care Aide like I was. He has his student loans to pay off. They won’t let him get any more though. HD is here. It is real. It makes us sick. Accept it. I accept the fact I am getting sicker. Accept the fact that we are all going to get sicker. Don’t hide it away. You can never have a life in denial. You can’t truly live in denial. You will never fell happiness, while trying to hide. Come out side. Don’t go into hiding. Come out and live. This is what life is for. To live. Move on. Live your life. Love your life. Find the hope again.

Tuesday, October 14, 2008

Bowling

I am glad Harper does not have his majority. Trevor is worried about me again. I am getting really, really sick again. I am loosing weight again. I am getting skinny again. I can hardly remember anything. He loves me and worries. I told him this is temporary. I am going to get cured. We are all going to get cured. I got changed back to volunteering on Tuesdays. My schedule changes so much. I am very laid back and don’t care too much about stuff like that. At least my moods are better. No more anger or paranoia. Last night I was too scared again. Aliens and ghosts again. Trevor said to picture Casper the friendly ghost. It is working. Make a joke. Improve your outlook. Joking is the only way to truly survive anything. I had Special Olympics today. I did so much better today. It is inspiring. There is one person who can hardly walk, and she is doing it. She has severe Fetal Alcohol Syndrome. That affects my family bad. I looked after them my patients. They were my kids. I loved them. It is a hundred percent preventable. My amazing Aunt adopted three of them. She looks after two foster kids. I come for amazing caring family. We all try to do our part to make the world better. I think it is hard to think of what kind of vet Jenny could have been. Tons of social workers. Laugh you at yourself. We crack jokes all the time, Trevor and I. They take away the fear and the pain. Laugh. Make your life fun. Make your life worth living. Make it fun. Crack a joke. A sense of humor can take you miles. My Mom was so funny. Same with my family. It is such a good feeling to laugh. To smile. To lose the death grip of HD. Just laugh it away.

More Updates

I updated my HD info page about he Internet fight dementia.

Web-Savvy Baby Boomers, Seniors Plumb More Regions of the Brain During Internet Searches

Using the web helps us fight dementia.

Monday, October 13, 2008

Thanksgiving Dinner

I ran into one of friends I have not seen since my birthday. She noticed that I looked healthier. My skin glowing. Gained weight. This ensure is working. I have been getting slowly sicker and sicker. Hard time typing and spelling. My chorea is so bad. I am swaying a lot now. I have the whole body sway. My moods are better and the anger is gone. Having trouble thinking. Total brain fog. Not remembering lots of stuff. Yesterday we made Thanksgiving dinner for Trevor’s Dad and one of his work buddies. He had no family here. So we invited him. I made a berry crumble. We make everything from scratch. Trevor’s Aunt came over for a visit. Tomorrow I get to bowl. Go to the Gleaners. I love working with toys all day. I am the best toy cleaner they have there. They leave all that for me. I also get to vote. I am hoping that evil Harper does not get a majority now. That guy scares me. I have my Harper is killing Canada sign up. My Nurses all love it. A group of eight people thought the same about Harper. Learn to love yourself again. Forgive yourself. Forgive others. HD is not us. We are not HD. We have it. It is not us. We are completely separate. We are still ourselves. We will always be here. Never forget yourself. Never forget your family member. They aren’t HD either. We are people. We have feelings. We have hearts. We bleed. We are human still. We aren’t HD. We are all people first and foremost.

Sunday, October 12, 2008

China Stem Cells

The place that I am checking out came out with a new press release. Our cure is here and now. I am excited. I would not give info on here unless I believe it is a hundred percent certifiable. I have researched these Dr's for a month now. My friend with RDS is getting surgery right now. She was wating two years for it. When she is healthy I can know more.

Friday, October 10, 2008

Happy Columbus Day


Happy Thanksgiving

I am so excited for Thanksgiving. We are going to make food here again. We are going to have to make a Turkey again. Last year we had no idea how to make one. We went to the grocery store and asked people in there. We made stuffing and gravy for the first time. They loved our food so much. We get to do it again. Trevor upped my Epival. We have been doing that for a week. It works too. I am getting good sleeps now I have that extra Zyprexa. I conk our early and get a good night’s sleep. I am hoping today will be a no symptom day. I am hoping all of you Americans have a good Columbus day. I am lucky to never have been discriminated against. That would be horrible. My Dad did not think I needed insurance. I had no idea at 19 that I would ever get married. Dad just thought the policy would go towards him. He does not need the money. When I got into Nursing school and into my Practicum, they all new. Being sick makes you a better Nurse. I understood what they were going through. When I get cured I want to help people again. People told me I was to empathetic as a Nurse. So is my main nurse Shirley. We both get attached and hurt when they died. I feel that is why we do it. Everyone here plan your future too. WE WILL GET CURED. It will happen. Not if and when. It is now. Your future and now are yours for the taking. Lucky turns 2 this month. My little boy is getting older. We are going to throw him a little doggie party. We are proud parents.

Happy Thanksgiving




Canadain Advocacy

The HSC in Canada is working to get rid of genetic discrimination in Canada.

Thursday, October 9, 2008

1 Year Anniversary

They are planning another care conference with my family and my team. The other one was good. There will be another in November. My home support Head Nurse Julie, told us about a power of attorney meeting they are having here. We are going to go. I need to live. I need to be resuscitated, like my Mom. We put her on IV when she could not eat. My Mom and Dad and us wanted that. The rest of our family thought we should of let her die. It was our wish and my Mom’s. I did not want to lose my Mom. She was so brave. I only can wish to be as brave as my Mom was. We have more disability papers to fill out. We might not get it again. At least with this one we can keep appealing. We have heard of people fighting for 7 years, until they got something. Today we had breakfast with Trevor’s parents. I had trouble eating. I learned some of the routine at the Special Olympics. I love it. Today we learned how to use ribbon and hoops. My site of hope and blog have been around for a year now. For a year now I have been saving people like me. Like my family. Even though I have been accused of bringing false hope, I am still around. I like to thank every person that comes here. You want to learn that we have hope and have a future. Since I started this, you know now. Go with this knowledge. Build your life.

Updates

I updated My Story Page

Wednesday, October 8, 2008

Hope

I take my upped meds tonight. Yesterday I was pretty happy. Not many bad mental symptoms. I am having another HD free day. I still do aerobics and yoga too. Going for walks with my little boy. The Nurses are coming early to walk with me and Lucky. I don’t want to get run over. This all temporary. This not our future. HD is the now. It will not take any more lives. The generations will stop. Don’t let anyone tell you otherwise. We don’t need to hear that the prognosis is bad. We don’t want to hear we are dying. We don’t need that matter of fact stuff. We need hope. We don’t need more information. We need hopeful information. I started this site and blog to do that exactly that for you guys. Trevor and I got sick of hearing we are all going to die. I will never stop. It effects me too. It effects all of us. It makes us depressed and suicidal and scared. I just can’t believe that most sites about HD, can’t see what the are doing to us. They don’t have it. They don’t know. I just wish I started this sooner. I could of saved a lot more lives. Every life is important to me. I have HD. I know what a struggle it is. Too be scared of those sites. Just don’t listen. Your life is worth it. Don’t listen to anything but the hopeful info now. We know that there is hope.

Tuesday, October 7, 2008

Special Olympics

I had a fun day. Volunteering and Special Olympics. I was really confused all day. I was confused while doing bowling. I am so sick today. I am starting the upped Zyprexa tonight. See how that works. I love being involved the community. It makes me happier to be so busy. Everyone needs to get out and feel useful. Get out there. Go outside. Go live. Go love life again. Volunteer. Get active. Live your life. Don’t let HD stand in the way. They had a person who was almost blind and bowling. Anyone can do it. It is amazing. These people so sick and yet doing so much. Make yourself into that. Make yourself to be that person. The person that people can say, knows how to live life. You will feel happy. It will do good for life. Just live. Feel your best. Get out and do something amazing. Just believe and you can achieve. You are the one with the power to make your life better. Make your life. Life your life. Love yourself. You can do anything you set your mind too. Volunteer and get out. Live your life.

Monday, October 6, 2008

Added a new poetry page

I added a new poem. Check it out.

Live

We had to change the times home support comes. Trevor’s working different hours. Now they come at 10:30 to 11:30 in the morning. Then they come at 1 in the afternoon till 2:30. I am still loving it. Making meals for Trevor when he comes home. It feels good to feel like a wife again. To make him his dinner when he comes home. I am having another good HD day. I am really fallen in love with my Lucky. He is our boy. That’s all we need right now. Last night I was less scared then I had been lately. Tomorrow I volunteer and go bowling. I am always excited to do both. Accept HD for what it is and what it is not. It is not a life sentence. It will not kill us. We don’t have to die anymore. We have a world made for the taken. A life made for the taken. Take your life back. Take your future back. It is our future. It does not belong to HD. This is ours. Fight for your life back. Fight for your dreams back. Fight. Never contemplating giving up. Create a life worth fighting for. Create a future worth fighting for.

Sunday, October 5, 2008

Fight

I have not taken my new upped Zyprexa yet. I get meds delivered now to my house. I can’t remember them. I needed the daily thing. I am getting more stubborn. More angry. They don’t start until Tuesday. Until then I go crazy. I have been scared every night. I am hearing aliens and seeing ghosts. Don’t get any sleep. I am sleeping pills and getting none. That makes my HD worse. Today I had a good completely free HD day. Let HD slide. Don’t let it eat your insides and your outsides. Don’t let it control your life. Never let it rule your life. This is your life. Not HD’s life. Fight to get yourself back. We are fighting for our lives here. Take it back. Our life belongs to us. Our future belongs to us. Fight for our hopes and dreams. Find for a reason to fight for your life. There are a million reasons why we should fight. A million reasons. A million ways. Just fight. Our lives are on the line.

Friday, October 3, 2008

Cures

Today has been a bad HD day. I am really tired and having a bad day. I have been continuingly having upset stomachs when I eat. It is hard to keep anything down. I have had bad Chorea all day. Hard time thinking. I have had two days like this. My sleeping pills don’t work right away. I have been up at 1 at night. Trevor is enjoying his new job. Love your life. Live your life. We will be cured shortly. Countdown for the cure will stop. We have all of the hope in the world going for us now. All of the technology and medical treatments that can make our lives better. They are already here. The generations will stop. Hope will never stop though. Won’t stop ever. Don’t give up the belief. Don’t give up the future. Don't give up living.

Thursday, October 2, 2008

Life

Today there was no Arithmetic Gymnastics. It was cancelled again. Live and learn from your life. Learn what life is. What it is for. We get a chance too, live like no one else. We understand and feel the world. We understand and feel our life. We understand and know our fate. We live like no else. We are the sick. We live freely and with love and reverence for everything. Learn and live too. Love the simple things we do. Love the simple things that life brings. Live. This is it. Love. This is it. We get one life. Learn to appreciate life. Learn to appreciate what we can bring. What others can do for us. Learn the cycle of life.

Wednesday, October 1, 2008

Med Change

I could not sleep yesterday. Too scared. Today we changed my meds. We upped my zyprexa. I am hoping that works. I am being driven crazy. Tomorrow I got Rythmitic Gymnastics. Tomorrow we get to learn a bit of the routine. We are all going to compete individually. I did learn part of the routine last time. They are planning another care conference with all of my Doctors in November. I always get so excited for the Special Olympics. Don’t disable yourself. Enable yourself. Don’t hide from the world. Become one with the world. Live your life. We are sick. We have challenges. We still have to move on and live. Live the best we can. Live the best we will. One life. Live it well. Our life, our dreams. Keep your dreams alive. Keep your heart alive. Keep your hope alive. Love to live your life. Learn to smile. Learn to live all over again. Learn to appreciate your life. Learn to live your life. The sunshine is where we belong. Not stuck in the dark.

Huntingtons Disease News Useful Links

A good study. It will help us get cures.

http://www.medicalnewstoday.com/articles/122748.php


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