Going Home Tomarrow

I am having another HD free day. Two in a row. Absolutely no symptoms the past two days. That is exciting. I hope it stays this way for a while. I am leaving to go home tomorrow. Trevor will get off work at 4:00. Then I go home. I won’t blog tomorrow. I can still get emails if anyone needs anything. I will be back the wed the 3rd. We will be coming back that night. Trevor’s boss gave him the run around. He has been doing for two weeks now. Trevor just wanted benefits or to be laid off. He told his boss to have a decision when he gets back. I am so excited to go home. I am so home sick. The Ministry here is paying for our trip. They pay for medical trips to families that truly need it. They gave us a 150 in gas cards. We are going to fill out the disability forms at my Dad’s. He has a printer and a scanner. It is good. My Dad has some info at his place too. I know that Gary is getting a 1000 in disability money. Don’t get married Gary. Not in Canada. We had an advocate. She could only get us 20 a month. Then we got Julie. All of my home support team helped out to get us this. Shirley and Katherine noticed how little food we had. Katherine would bring us hers. Things are looking up for us. Things are looking up for all of us. Things can only go up for all of us here. All of us with HD. Things are going up so high. We have all of the makings for a miracle. We have all of the making for real cures. We are real people with an illness. Under the HD we are there. We need people to remember that. Countdown for the cure won’t take long. We are here. We are real. We need real cures.

Walk A Thon

You are invited to the 2nd Annual NW HDSA Walk-A-Thon!
(Please note that the NW chapter serves WA, OR, ID, MT, and AK)

A year has gone by in the Pacific Northwest and it is time to get out and support our regional Chapter. Our goal for the 2008 Walk-A-Thon is $20,000. Participating is fun and easy!

The Walk-A-Thon will be held Saturday, September 27, 2008 at Spanaway Lake Park and is approximately 5 kilometers long (the path is paved and wheelchair accessible). There is a $20 minimum suggested registration donation.

In addition to the 5K walk, there will be refreshments, prizes, a raffle, a silent auction, and memorial luminaries.

FAMILIES AND DOGS ARE WELCOME! So please join us!

The park is located at military Rd. and 152nd, Spanaway, WA (across from Sprinker Recreation Center).

To register for the walk or if you have questions, please contact Miranda Bodus: 253-355-1746 or miranda@nwhdsa. org

Hope Flows

Yesterday I was walking Lucky. I did not see a car. We both almost got ran over. Sometimes I have a hard time seeing. Home support is coming earlier to walk Lucky with me. Now that Godmother is gone it is no longer safe for me to walk alone. She used too see everything I could not see. She moved away. Amy my Occupational Therapist brought this up. They come at 3:30 now instead of 4:00. I talked to them about it. I don’t want us to get run over. I am having a good HD day. I am glad I got the mouse over effect working. When I first started this, I could not get one to work. This took so long to get to work. I am having an HD free day. Feeling very healthy. Today we find out if Trevor gets laid off. There are lots of jobs available. I am so happy to go home. See my family. I always get so excited. Everyone live for the now. Cures are sure to come. Don’t let anyone tell you different. Cures are here. They are real. Believe in the cures. Never lose hope. They are real. They are tangible. They will take us and make us healthy. They can change our life. Just believe in them. They will change our prognosis. Who needs someone matter of factly telling us that we are going die. You will never here that here. I know how bad it is to hear that. I have HD too. That is why I started this site. I know a hundred percent that we will be cured soon. Matter of fact leaves us nowhere. We need to get some where. Hope is real. Hope is now.

New Award Badge

I got a new international award badge. It is Steliart Award Of Excellence award badge.

Brain fog

Yesterday my internet was not working. Trevor had to fix my internet. I will be gone on Sat and coming back on wed. What is funny is that I told the Gleaner’s and home support the wrong days too. I told Trevor I did not want to lose my brain. With my site I am constantly updating when I remember it. I am hoping they can do the COQ10 trial form here. Yesterday my brain fog was bad. I could not remember anything. We are hoping to get disability. That would make our life easier. We had times where the Nurses came here for food and we had none to cook. Katherine would have to bring food from home. We are always hitting the food bank. Where I volunteer. My Nurses told everyone that they could about us. Finally the Head Nurse Julie did help us. This time we will have to fill out paper work. It is looking a lot better now. Trevor is healthy again. He is having trouble with his job. He might get laid off. They lied and told him that it was permanent job. It is not. They also won’t give us benefits. They all know I am sick. Nothing. Trevor will get his forklift ticket and go somewhere else. Just let everything slide. We are trying not to worry. Try not worry to. Try living in the moment. Day to day. Live every second. Enjoy every second. Every moment, part of life. Just live. We have to live for us. We have to live for tomorrow. Live for today. Live for the cures. We know they are coming. Wait for the cures. Countdown for the cure. Countdown for our future free of HD. Sooner than later.

Believe

My Chorea is so bad today. We are finally getting some where with disability. We might get 400 to 700 a month. It would be more in the field of 700. We have more processes to do. This is better than the 20 dollars they offered us in CPP. We are so excited. That is so much money. We would save some and go travelling. I want to do as much of that as I can. Trevor wants to take me to the Ocean some day. He wants to take me before I get to sick to enjoy it. I am going to talk to my doctors about Dimebon. I got the dates confused. We are going home on Saturday. That is another way I am losing my mind. I register at the Special Olympics on September 15th. Bowling starts when I will be gone. It will be on Tuesdays too.So excited about that. I get to have fun and meet other people who are sick too. Live and make dreams for your life. Give yourself something to look forward too. It will help you live the best you can. Plan your life. Don’t let HD get in the way. Dream will get you through the toughest times. Having something too look forward too. Live your life the best and most fun you can. Just live. Plan for our life back. We can get cured,. There is a dream that we can look forward too. It will happen. We can get cured. We can full fill our life. Just believe in our life.Believe in our cures. Believe in our lives.

Cherish Your Life

Godmother move out yesterday with her Mom. We are going to have slumber parties. My brain fog is getting worse. I can’t remember anything again. When I go to see my Doctors I will be hopefully be in the C0Q10 trail. I am hoping they can do it from here. We live 5 hours away. Shirley will drop by any minute. I am also having trouble talking. Trevor ended up taking Saturday off. He is feeling better now. We all were scared that I would get it. No immune system. I am having a healthy day today. I am excited to go home and to get into the Special Olympics. Get excited about life. Get excited again. You have a life given for you. Live it. It is all we are given. Does not matter if you are sick. Don’t give up your life up ever. Live. Life is worth living. We are challenged but we have life like no one else. We live with a deep perception of life. We understand life. We don’t take anyone for granted again. You never know what is going to happen to anyone you love. Never take anything physical for granted either. Every step is one we can take a knowledge of life from. Live and love your family. We know how to live and love like no one else. We are the sick. We know and our families know too. Cherish every moment. Cherish your life.

Fight

Yesterday I was irrational and angry. I had some hallucinations too. I saw a woman turn into a dog. I got scared when I went to sleep. I can’t believe Godmother is moving. So excited to go home. Trevor made an appointment with disability people. We are hoping that Julie can get us some benefits. They are sending us information on government programs made to help us. They have that at the home care office. I am glad Katherine is working. I felt bad because I like her. They have her working now. We need something to help us out. We were afraid that I would get Trevor’s pneumonia. No signs. I don’t think I have it. Trevor is back to work. We can’t afford days off. I get to go home. Fight for your life back. Fight like this is the battle of your life. For your life. We fight everyday. Every way. Just to get ourselves back. Fight like this is the battle that counts the most. This is our life here. Our life on the line here. Fight harder and harder. Fight faster and faster. We need ourselves back. We need our old lives back. Fight every day. Our life depends on it. Depends on the fight. Depends on our strength. We are stronger then we think. Use that strength. Fight with all we got. Use your strength. We are so strong. Use it to fight HD.

Big Fall

I fell into Trevor’s BMX again. I hurt myself good. I am in so much pain from falling. Cut myself. My sleeping meds aren’t making me go to sleep. Last night I was up till 1:00am. I stayed up working on here. I could not get to sleep. We are going to up them to one pill now. Instead of half. Trevor has Pneumonia. We went to the hospital and saw a Doctor. He was feeling sick the past couple of days. This is the third time he got it. Trevor and I will be staying at bed and breakfast when I go home. I am like a kid. I get so excited about things still. I had trouble dressing this morning too. Live like this is all you get. This is all we have. Don’t let HD get in the way. Live and love your life. Don’t hold grudges to yourself. Forgive yourself. It is not you when we act out. It is HD. When we act out. Never forget the person we were. We are still there. Same person, taken over. Not taken for good. We will be cured. Things will happen. Better treatments. Better cures. Hold on to the hope. Hold on to the joy of life. We all deserve to be happy. We all deserve to live. To be happy. We deserve a lot. We will get it. It will be hard. We will get there. Prefect joy and happiness.

More Updates

I changed my Mom's Memorial page.

Finished New Poem

I am completely finished with my new poem. I changed some things in Jenny's Memorial Page too.

Added New Poem

I added a new poem called live. Check it out.

More Updates

I updated my HD information page again.

Cocoa Compound Boosts Brain's Blood Flow

I already have two pieces of healthy chocolate. I had no idea it would help us this much.

http://www.webmd.com/brain/news/20080821/cocoa-compound-boosts-brains-blood-flow?ecd=wnl_nrn_082108

Countdown For The Cure

I love my Trazadone. It works so well. I feel so good on it my Chorea and focus is better on it. I feel healthy. It wakes me up and helps me get a better sleep. I went to the Gleaners today and was more focused and less sick. I will find out more info about the cost of Special Olympic Bowling. I am going home on the Aug 28th until the Sept 3rd. I am so excited. COQ10 trials are starting. They can check out my HD for the COHORT study. I am feeling not afraid anymore of dying. It was hard to take someone your age dying. I know we have a good chance here. I believe that a hundred percent. No one has to die anymore. The generations will stop. Countdown for the cure will stop too. I get to see my Dad and my family. See how sick Gary is. I am glad he is dealing better and is the COQ10 trail too. He is just so sick, so young. I am so homesick. I will constantly have my Dad as mine and Trevor’s support. My whole family knew what he would expect too. He knew when we got married what it would be like for us. We all feel that Trevor can handle this. Lucky’s Godmother is moving. They won’t live downstairs anymore. She will go to college here. Work on her Political Science Degree. When I first met her we talked politics. She is living out my dream. Being a Politian. Live your life. With hope and focus. Focus on our future all together cured. No HD. All of can get there. Countdown for a cure won’t take long to get there. It will come sooner then we think. Sooner than later. No longer fear death. We don’t have to choose that path. Don’t be afraid anymore, like I am now. We all have days where we fall. Get up and dust yourself off.

Amaryllis Campaign

The Canadian HD Society is having their annual HD Amaryllis Campaign. Buy the flowers. My family does this every year. They want to raise a million dollars this year.
http://www.huntingtonsociety.ca/english/amaryllis/

Staff Breakfast

Today we had a staff breakfast at the Gleaner’s today. St 8:00. It was so good. Trevor forgot to wake me up. I did wake up at 8:15 this morning. I volunteer there again tomorrow. I love volunteering there. They are all sweet ladies and men there. My Nurse will be here shortly. I love home care. They took the pressure off of Trevor. We went and had dinner with Alice last night. It was so good. The sleeping pills did not work until 11:00. They gave me half a pill to try for three days. If that does not work, then I go to the full one. I have been suffering from bad anxiety attacks lately. I got the tic tacs again to treat it. You take one and convince yourself that it is and anxiety pill. That works good for me. I also have that problem with my upset tummy. Sometimes I just can’t eat. I have been feeling like I am having more trouble dressing. Yesterday I actually got scared of dying. This hardly happens. Someone in the HD support group lost a grandson my age to JHD. That scared me. I was so scared. Trevor reminded me that I had a long life ahead of me. My Mom calmed me down. I could feel her there. She has sent me three dreams on how we are going to get cured. That did not last long. I was back to my happy self. Everyone falls once in a while. I feel so bad for those kids. My family works the same way. My cousin and Gary were sick at 21. The one thing that keeps me going is hope for the cures. They are real. They will come. They will be our miracles. We deserve them. We have been waiting so long for them. It is about time that we got them. My Mom said I would be in the hospital and in home care for a bit and then I would be cured. That means we all will be. Live for the cures. Live for our futures.

On Sleepy Med

I updated the HD information page. About the sleeping pills I am on. Rhythmic Gymnastics start on the third Tuesday in September. We are getting a way to get my IQ tested. Our Doctor could not do it. My Mental Health worker if getting in there, finding the person I need. I am so excited. Tomorrow is the Gleaner’s staff breakfast at eight in the morning. I am going. I did not have a Kidney Infection. I drank like crazy to get rid of it. It stopped. We are thinking that every day I am going to drink cranberry juice and have yogurt. That way I will not have any more worries with my bladder. I have been getting sicker and sicker. I got sleeping pills now. Trazadone. I have been going through periods of insomnia. I need sleep to fight HD and stay healthy and focused. The past two days I slept bad and got so tired. Today I had to have a nap. I hardly do that. I get to have sleep now. Learn to accept to worst from HD. Then you won’t be shocked when it gets worse. Learn to love the flaws that are caused by HD. These flaws that HD make. They change us. We will always be the same people. Always. Forgive us. Forgive ourselves. Especially ourselves. We did not choose to have HD. HD chose us. Live with the best intentions to have the greatest life ever. Live and make the best life you can.

First Approved Treatment For Chroea

This is exciting. The first treatment for Chorea approved. Hopefully more come.

http://news.yahoo.com/s/ap/20080815/ap_on_he_me/huntington_s_drug

Back From Camping

We ended up going to Kimberly BC. It was so fun. We got to go to see a waterfall. It was gorgeous. It was a couple hot days camping. The heat streak is back. We had so much fun. We saw tons of deer’s. We got to tour the Bavarian Village there. So much fun. We might take our little beaver to the river tomorrow. He can swim. Tonight Shrilly and I are making dinner. Trevor’s Dad is coming over. Home support gave Katherine warning. She is here and actually working now. Doing everything she was supposed to. I feel like I am getting sicker though. I got scared and paranoid while I was camping. At night I saw scary face looking at me. I thought people were breaking into the KIA. I heard bears. I went to the bathroom and was scared of getting attacked. I could not sleep that night. Kept grounding myself and hugged my little Lucky. If you hug something soft, it takes that fear away. I will find out soon if I have a kidney infection. I am drinking like crazy. Cranberry juice. Eating yogurt. I hope everyone is having a good summer. Enjoy the time off. Enjoy the sunshine. Enjoy life. Enjoy everything. Fulfill your life. Make goals to live the best you can. Fulfill your life with hope. Fill that up every day. Live your life. Love the outdoors. Don’t let HD stop you from getting out and enjoying the sunshine. Don’ t disable yourself. Enable yourself.

HD Petition

As of this morning, August 16, 2008, there are only 22 signatures to help move this bill for Huntington's Disease. Please let the House Ways and Means Subcommittee on Health know how important this bill is to your families and friends living with HD. Sign the petition then pass this to everyone on your mail list and request that they sign the petition too! If anyone wants to read or share H.R. 6259 HD Parity Act of 2008 before signing.


http://www.petition/online.com/HR6259/petition.html

Camping

The date has changed again. I will be gone this weekend.

Camping

I am hoping I don’t have a Kidney Infection. Yesterday I was peeing every ten minutes. Severe pain. If I do we got it before it got serious. Get on everything quick. The more we put off, the worse it gets. Especially with anything we get. I get everything here. Every cold. Every flu. We have no immune system working. I can’t wait to get into COQ10 trials in Calgary. I hope it works. See my family. Get to see the kittens on the farm. I feel I am having another HD free day. I am going camping now on Sunday night and Monday. Our little Beaver will be swimming. I am so excited about the Special Olympics. Trevor found me some tapes of them on the net. Learn to live with HD. Together we walk side by side. It is not a part of us. It sinks in trying to take us over. Fight it back. This is us fighting for our lives. We will win in the end. There will be a cure. There will be something to treat HD. Every morning the fight is on. Every waking hour we are fighting for our lives. Every smile we have to fight for. The fight is always worth it. Find the happiness in your life. We are fighting for our life. Our right to have a life. Our right for happiness. It is all we fight for. The right to have hope in the future.

Kidney Infection?

Today I had a fever and an upset stomach. The pain is back when I pee. We thought it was a bladder infection. It was not. The Doctor thinks that it be involving my Kidneys. They were tender when he touched my Kidneys. We will get the result in the next few days. On Saturday and Sunday I will be camping at the lake. This time we will have our little Lucky. Our Beaver. Then after that we go home. My mind is clear. No brain fog. I am hoping no Kidney Infection. When I experience something wrong, Trevor and I don’t wait. Today he had to get out of work and go to the hospital. We are regulars there! Accept HD as it comes. As it progress. The way it changes every part of our life. Accept it. It will affect every part of life. What we get is the right to move on. We need to move on. Then we can be at peace. I will be one of the WEAREHD site councilors. They need people on there that have HD. I might be the youth leader. We will see. What position I get. Live and love life. This is all we have. Enjoy the sunshine. I am going to this weekend. Then after this I go home to see my family and my HD team. Tons of fun this month. Everyone make your own fun. I miss my family so much. I always get so excited when I go home.

Severe Brain Fog

My best friend and Lucky’s Godmother is moving. They are moving to a different town. It is close to Creston. Want to know what HD is like? I put down my Trevor’s age wrong. I totally brain fogged. Thought I got it right. I find myself updating and figuring things out of my brain fog. My Trevor is 36 today. I forget a lot of things. Then I have spontaneous things I can remember. I feel like I am slowly losing my mind some days. I will call my Dad and forget the main questions that I needed to ask. The brain fog is getting worse. They have to remind me twice to take my meds the past two days. Everything is getting worse. My eyes had a hard time focusing yesterday. This is part of HD. We will all get sicker. It is part of HD. I have accepted that. Just accept the fact that we all get sicker. Accept the reality we live in. HD makes us sicker. That is the fact. No matter how sick I get. I can’t stop. I can’t let you people get scared and afraid. I was scared of other sites and blogs too. That is why I started mine. I could not stand that at all. I am your daily hope. I will never go away. Live and love your life. Accept the fact that we are going to get sicker. The thing now is that we can get cured. That changes the picture. We have real hope. Sometimes hope is all we have. We need to believe in miracles. Not another one of us has to die. We can all live. Plan your future.

Advocacy Day

The NYA is having a national Advocacy Day on Aug 15. Everyone spread the word about HD. I know everyone here knows I have HD. I have HD pride. This is a blessing. Make everyone aware. Most of my friends did not know what HD was. Spread the word.

http://www.wearehd.org/profile/journal/view.php?id=679

2 Months of Ensure 112.5lbs

Before Ensure 100 lbs

More Updates

I updated my Care Giving Page.I update my HD info Page too.

Trevor's Birthday

Today is Trevor’s Birthday party. He is turning 37. He is 11 years my elder. Age does not matter for us. I wanted someone older who wanted a relationship. That is what I told Gary the first time he met Trevor. They are more mature and so am I. Try raising your family. Looking after your Mom. See if that does not mature a person. When I was 19, I felt like I was in my 30’s already. They are getting me an IQ test to go into the Special Olympics. I can compete Nationally because I am a genus. I am just going for fun. That is fine with me. They need people that have 70 IQ points. I have 145. Low level genius. They are going to see if my HD changed that. The years with HD might take it away. I would be able to compete Nationally. I am in though. We are working to get disability with my head Nurse Julie Gilles. We actually think this time we will get something. I gained 12.5 pounds. I am so excited. I no longer look like I am going to die. Drink ensure everyday too. Julie was telling me to take half in the morning and half at night. I have had good HD days lately. Julie is surprised I am walking at all after going through my disability papers. Try to live out your life in peace and harmony. That is what we have to be. Come to peace with HD. Come to peace with life. We have HD. That is the way it rolls. Come to peace. Stop the snowballing effect of fear. Don’t fear it anymore.

More Articles

More promising HD research happening. There is alot of HD research helping us get closer to a cure. Countdown for the cure continues.

http://www.hdlighthouse.org/showUpdate.php?p_articleNumber=564

JHD Studies

This article is about the JHD kids. Info and studies that you should join. This kids pull at my heartstrings. I think we need more research to stop this one.

http://www.hdlighthouse.org/showUpdate.php?p_articleNumber=584

'Intrabody' can mop up mutant protein in Huntington's disease model

'Intrabody' can mop up mutant protein in Huntington's disease model . Huge breakthrough.

http://www.hdlighthouse.org/showUpdate.php?p_articleNumber=573

Wheel running from a juvenile age delays onset

Wheel running from a juvenile age delays onset of specific motor deficits but does not alter protein aggregate density in a mouse model of Huntington's disease. This tells us basically what I have been telling all of you. Exercise is good for us.

http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pmcentrez&artid=2335112

Lazy Nurse

My favorite Nurse Shirley is back. She was on vacation. I missed her so much. She is so nice. She filled a complaint against the lazy Nurse Katherine. There have been tons of complaints against her. She comes late too. At least I am with it. She did not remind me about my meds. Trevor had to call every morning to make sure. I did not forget them. This week I get to find out about registering for the Special Olympics. My Dad might pay for the bowling. We will see. I hate asking my Dad for money. He already pays for this site. When I told me my Dad he was really excited too. My Dad is here a lot. I don’t know what I would do without my Dad. I have been watching the gymnastics in the Olympics. They had a commercial about the Special Olympics. Trevor said those are my peoples. I am excited to meet other sick people here. I was the one in school who always befriended all of the handicapped kids. We have foster kids in our family too, Fetal Alcohol Syndrome. My Aunt is amazing. Don’t let HD immobilize you. Walk. Do aerobics. Do everything yourself. Build neurons. Go for hikes. Fight. This is another way to fight HD. Everyone needs exercise. Especially us. Fight hard. Fight with fun activities. The more we are active, the healthy we get. I do aerobics and yoga before I get on here. No matter how sick I get. I will still blog every day. I am having a hard time spelling now. I can’t ever give up. I just wished I started this sooner. I had to have symptoms before I could do this. Every life I save. Just one is all I need. I thank everyone that comes here. You deserve hope. I am here to give it. I started this up because I was sick of the matter of fact, we are going to die approach. I actually feel bad for not starting this sooner. Trevor's Birthday is on the 13th.

Stem Cell Breakthrough

This is that full stem cell article. This is absolutely huge. What breakthrough.Countdown for the cure.

http://news.yahoo.com/s/ap/20080808/ap_on_sc/sci_stem_cells_diseases

Good HD Day

That lazy Nurse might lose her job. Today I had one in here who cleaned with me. Not lazy at all. We have a good team here. All of them are so nice. They try so hard too. Especially with getting us benefits. I will be helping out WEAREHD.com. It is too much work for 4 people. I think today is a good HD day. I am so excited for the Special Olympics. It is going to be so fun. Make some dreams yourself. Don’t lock yourself up. Don’t let HD take your life away. This life is yours. Do what you want to do. Make dreams. Make goals. Do everything you can to have a good life. You will thank yourself later. Do you want to do to live. Whatever you can to make everything good. Isn’t that Dimebon amazing? It is. I am so happy. The countdown for a cure can stop soon. Shortly we will have a cure. Everything is getting more hopeful. What about those stem cells? So much hope all around us. You just have to look at that hopeful side. Take al look around. Our cures are here and now. Just dream. Live you life the way you want to. It is your life. Live it. Love it.

A Real Working Cure

They found a real working cure in that Dimebon med. This is an article about one of them that was cured. This is huge. Countdown for the cure might stop here and now. I think we got it. I was in tears because I was so happy when I saw this. This is what we have been waiting for. It works.

http://www.wxii12.com/news/17125944/detail.html

Mom's Memorial Page

I made a memorial page for my Mom. I wanted to do one for a while now. There is one now. I will try and be as brave as my Mom was when she was sick with HD. My Mom was so brave. She tried to live the best kind of life. I am from the same cloth as my Mom. Yesterday I forgot my morning meds. Katharine did not remind me. Today Trevor had to call me to make sure that I took them. My Dad and Mom had a lazy Nurse there too. She only worked when Dad was there. I will be helping out WEAREHD.com. They need tips from HD people and there families. I love that HD MySpace. I thought it was one of the greatest things going for us. Would do anything to help. Alberta Health are making us pay 250 transfer fee to move to BC. That is horrible. Trevor talked to the government. They can subsidize us. They had a collection agency after us. Got to keep it together. HD and life. We have to hold on to the strings of our life while we are falling. With HD, we are bound to fall sometimes. That is when it is more important to fight. Just hold on as tight as you can. Don’t let go of your life. Don’t give into HD. Not when there are these huge breakthroughs. Did you see the stem cells! That is amazing. Stay and fight with me. Countdown for the cure. Let’s stop the generations. No one needs to die anymore. No one needs to think that anymore. Don’t lose hope.

Stem Cell Breakthrough

By STEPHANIE NANO (Associated Press Writer)From Associated PressAugust 08, 2008 8:26 AM EDT NEW YORK - Harvard scientists say they have created stems cells for 10 genetic disorders, which will allow researchers to watch the diseases develop in a lab dish.This early step, using a new technique, could help speed up efforts to find treatments for some of the most confounding ailments, the scientists said.The new work was reported online Thursday in the journal Cell, and the researchers said they plan to make the cell lines readily available to other scientists.Dr. George Daley and his colleagues at the Harvard Stem Cell Institute used ordinary skin cells and bone marrow from people with a variety of diseases, including Parkinson's, Huntington's and Down syndrome to produce the stem cells.The new cells will allow researchers to "watch the disease progress in a dish, that is, to watch what goes right or wrong," Doug Melton, co-director of the institute, said during a teleconference."I think we'll see in years ahead that this opens the door to a new way to treating degenerative diseases," he said.The new technique reprograms cells, giving them the chameleon-like qualities of embryonic stem cells, which can morph into all kinds of tissue, such as heart, nerve and brain. As with embryonic stem cells, the hope is to speed medical research.Research teams in Wisconsin and Japan were the first to report last November that they had reprogrammed skin cells, and that the cells had behaved like stem cells in a series of lab tests. Just last week, another Harvard team of scientists said they reprogrammed skin cells from two elderly patients with ALS, or Lou Gehrig's disease, and grew them into nerve cells.Melton said the new disease-specific cell lines "represent a collection of degenerative diseases for which there are no good treatments and, more importantly, no good animal models for the most part in studying them."A new laboratory has been created to serve as a repository for the cells, and to distribute them to other scientists researching the diseases, Melton said."The hope is that this will accelerate research and it will create a climate of openness," said Daley.He expects stem cell lines to be developed for many more diseases, noting, "this is just the first wave of diseases." Other diseases for which they created stem cells are Type 1, or juvenile, diabetes; two types of muscular dystrophy, Gaucher disease and a rare genetic disorder known as the "bubble boy disease."Daley stressed that the reprogrammed cells won't eliminate the need or value of studying embryonic stem cells."At least for the foreseeable future, and I would argue forever, they are going to be extremely valuable tools," he said.The reprogramming work was funded by the National Institutes of Health and private contributions to the Harvard Stem Cell Institute.--

-On the Net:Harvard Stem Cell Institute: http://www.hsci.harvard.edu/

Copyright 2008 The Associated Press. All rights

Changed Web Ring

I am part of a new web ring. Something was wrong and I got kicked off the HD one. This new one is Peace and Harmony spreading web ring. It is the Fairy Wing Ring. It is run by a different company. Hopefully it works better.

"It's main purpose is to unite people who bring love and peace to the world through our love for humanity. "

Lazy Nurse

I just got back from volunteering at the Gleaner’s. It was so much fun. I am now going to volunteer just on Thursdays. I had so much fun today. Tons of toys to go through. I think I will have a bad HD day again. I am having worse chorea than ever. I have just been feeling so tired. I do not like one of Nurses. I might file a complaint. She is so lazy. I am the patient and I have to clean up the dishes. I have to clean up the cans she leaves. She will come and go straight to the couch. The past two days I have burnt my hands because she won’t help me. I have been so sick, I did not know that was hot water. I hope everything goes well. I have been so scared to tell them what has been happening. That is why I miss Shirley. Not a lazy bone in her body. Everyone else I love. She would leave working with me early and go shopping.I feel so bad for bringing this up. I feel that we should be taking care of the problem. I get so anxious when she comes. I always hope for the best for us. HD is not a life sentence for us. We have to realize that. We will not die anymore,. We don’t have to cry any more. Countdown for the cure begins now. It will come sooner than later. We know that now. There is so much hope now then ten years ago. More hope than other illnesses. Even though not a lot of people know, more research is coming our way. Watch for the cures when they come. All of the breakthroughs.

Bad HD Day

I miss my main Nurse Shirley. Hope she will be back soon. We have such a great team here. The last two days had been really bad HD. My chorea is so bad. I am having brain fog. I am drooling like crazy. So sick. I have been exhausted which makes things worse. I been irrational too. I was scared last night. I get scared of the dark now with my HD. The halluncations are continuing. When I was camping with Trevor at night I had a lot of them. I just mainly felt scared. Trevor is worried again. He does not want to lose me. He will never forget the real me before I got HD. Even if it was for 6 months. We were the same with my Mom. We will never forget the real her. It is the same with all of us. They know the real you. They love the real part. We aren’t HD. We will always be separate from HD. Forgive ourselves when we have a moment that HD causes. HD takes over sometimes. Takes our wheels. Tries to take us out. We are the ones with the power to fight back. We can win in the end. We will be victorious in the end. This is our life here. Fight. We need to take back our life. We can. We can get in the trials. We can laugh. We can love our lives again. Fight back. We deserve the right to be happy. We deserve to love our lives. We have to fight every day we get up. Every day. Only we know the fight that it takes. Only we can win. We can get cured. We can exercise. We can take our meds. Go to Physio. This our fight. Fight hard. Our life. Believe that we can defeat HD. As soon as we are cured. Countdown for the cure.

Back

Hey…I am back…What a surprise!!!! I had no idea they were planning a trip to Ainsworth BC. Ainsworth has the hot springs caves there. We stayed in a resort there. It was so fun. I had so much fun. We dropped Lucky off at a dog resort. Trevor’s Dad payed for that. He got to meet other dogs. He loved it. We loved the resort that he was in. I had so much fun with Trevor. Everyone could probably tell we were newlyweds. We went camping too. It was fun too. I love being outdoors. I could live out there. It was good to concentrate on just us and not the worries that our live share. We went on 4 hikes. I climbed a lighthouse. That was so hard to climb. I fell. On our way down the mountain. I fell. Skinned and bruised. It was not bad through. Trevor’s Mom paid for everything. We had a good meal there. We had so much fun. I am glad we did that. My HD symptoms weren’t bad at all. Our next trip will be to see my Doctors and family. I am excited to see my Dad again. I miss my family. We all stick together. Next, Special Olympics. To get into another study. That COQ10 one. I won another caring site award. I am dancing again to train. Love your life too. Live your life too. Have fun. Never let the worries be too much.

Walk For HD

They started up another walk for the cure web site. Join and make a differnece.

http://www.walk4hd.org/

On Holiday

I am going tomorrow camping. Trevor's family and his surprise was an all expenses paid trip to Ainsworth. I will be back on Tuesday.

Good HD Day

Today my Trevor has a surprise for me. The last one was Lucky. I wonder what he has for me. He has been saying this for a while now. I can’t believe it has been two years. My HD physical symptoms are getting less. I am perfectly healthy today. You never know what day you will be healthy. Also what day you won’t. My mental symptoms are getting worse. Non stop hallucinations and irrational thinking. I saw Lucky yesterday. It was not him. These are very scary hallucinations. I saw someone skateboarding. They did not have one. They are all back now. Live and love your life. I do believe that accepting HD is the only key to happiness. We need to accept it. We have HD. This is us. We are HD. This a illness that we will have to do the best to live with. Live and love HD. Love and try to live your life to the fullest. That is what life is for. Don’t ever let HD stop and take that away. Fight and grow. HD does help us grow. Grow as a person. We truly live. Accept and live with us.

The FDA approves a Phase IIB clinical trial for ACR16

This is a phase three trial to find if this cure works for us. It does seem promising if it made it this far. So much hope for a cure. We can let the generations stop.

http://www.hdlighthouse.org/showUpdate.php?p_articleNumber=583

Ritilin Can help JHD

This is a huge breakthrough for all people that have JHD. There is tons of hope on that side too. This is proff of that. Never give up hope.

http://www.hdlighthouse.org/showUpdate.php?p_articleNumber=588

More Updates

I added more to the my story section.

2 Years

I miss Shirley my main Nurse. She should be back soon. She is on holidays right now. We have to contact the ministry here to get us some money to go to Calgary and see my HD team. I am so excited about Sunday I can’t wait. We are going camping and go for the hike around the Lake. I still can’t believe it is two years. My Trevor also has a birthday this month two. He will be thirty three. He is ten years my senior. Love blinds a person. Age does not matter. I have been having an HD free day. So healthy. We had fun at Alice’s house. Eat and took the dogs out for a walk. That article has me a bit afraid of that happening to me. It could happen to anyone of us. It is not our fault. Try to sill life life like you should. Try not to lock yourself up inside. Take yourself out to play. Never lock yourself up. It is no good. Live. You may regret it later if you don’t live now. Live to the fullest. Try to forgive yourself with the HD. Forgive others too. Don’t judge ourselves. We are sick. We can’t help it. Don’t let the stares get to you. Don’t run away. Run towards.