Tuesday, September 30, 2008

Hope For Our Future

Yesterday I could not blog. Trevor’s cousin Laura was here. Trevor was reformatting my computer. I am still not feeling mentally stable. It is so bad. Hard to deal with. Tomorrow I get to see Dr. Walker about my meds. Today I bowled. I am getting so good. I got another spare. I got a 98 today. It is getting so much better, with bowling. I made some good friends so far. I volunteered at the Gleaner’s today too. I always love it there. Trevor is going to volunteer there this Saturday. I have been scared at night. Afraid of aliens and ghosts. I can’t sleep thinking of them. Gary is doing good. You could hardly hear him on the other line. It is hard to hear that. Way too young. Way too early. He has not started the C0Q10 or creatine studies yet. Free your mind of HD. Mentally and physically battle it back. Fight it. This is our life. Stand up and fight. Be strong. Fight. This is our life it wants. It shall not take us without a fight. Fight for your life back. Fight it back. Fight HD away. Fight for your sprit back. Fight for your hope back. Fight for your future back. Fight for your dreams back.

Sunday, September 28, 2008

My real life testing


Today I found a comment on my blog. I got asked about testing. How I did. How you can handle the results. I had my Grandpa, My Mom’s Step father saying he did not want any HD grandchildren. He wanted us tested before we got married. What is sad is two of us who did that. I could not let my Grandpa’s worst fear come true. I was the first to find out I had it. Another thing pushing me. I had two futures that I could have done. Wrestling or dancing or getting an education. I did not want to waste money or time if I put it off. The main thing that will help lesson the fear. Distract yourself. Try not to think about it. That is how the fear is created. Is the knowledge. The knowing. I did break down two days before I got my result. When Mom sent me that dream. Rely on your family. You will need them though the period. I relied on everyone. The night before testing I stayed at my cousins house. She was negative. That morning she took me out for ice cream. She thought something easy like that would be good for me. Don’t think. Don’t give into the fear. The fear will make you even more afraid of the result then necessary. My Dad and my friends were there. There is so much hope. Don’t ever get scared of dying. We have good years ahead of us. Don’t feed the fear. Eat the fear. Take it in and deal with it.

Friday, September 26, 2008

Forgive Yourself

Trevor’s Mom is pulling away again now. She won’t call me. Won’t do anything with me. When she calls it is always for Trevor. She will spend time with him and not me. Everyone is so supportive but her. It hurts me like crazy. I have done nothing wrong to her but have HD. I have not done anything wrong. I have not hurt Trevor. I have never broke his heart. My family knows HD. They don’t judge or cut us off. It is everyone but Alice. I will never forget how she left me in the hospital and tried to get Trevor to leave me. I was in the mental hospital getting my meds changed. I did not know if he still wanted me. My Dad was going to save me with his girlfriend Karen and take me home. Even though all of this is hard. This is our life. This is how it goes. This is the real HD. There will always be people that can’t take it. We have so much to do on our own sometimes. Accept this too. You can’t hate. I do not have any ill will against anyone. Grudges will tear you apart. Forgive. Forgiveness is what is right. Forgive yourself and forgive others for their wrongs. Forgiveness will set you free. Set your soul free.

Thursday, September 25, 2008

Special Olympics Rhythmic Gymnastics

I am very confused today. I was running outside, forgot where I was going. I am so glad Jenny raised all of that money. It is good that something good can come from something so sad. The companies that gave money for the Scholarship, both of her parents work for them. My Aunt works for the fire department. My Uncle and Gary work at Allen B. Olsen’s auction mart. I am glad they created a new library too. Our library there needed tons of work. My HD has been good lately. We upped my Epival, a half tab. I did my first day of Rhythmic Gymnastics. It was crazy fun. I loved it. It is a bit ballet, with balls, hoops and ribbon. We learned part of the ribbon routine. I was a bit confused. I am so glad I joined. I love this. It is so much fun. I hope Gary has fun in it too. Love your life. Live with your mind free of HD. Don’t let it interfere with our lives. This is our life. Live your life. Enjoy your life. Get outside and enjoy the fall. Enjoy exercise. Keep yourself healthy as possible. Fight back. Our life is on the line here.

Wednesday, September 24, 2008

Jenny's Memorial Fund

I made a page that you can get through Jenny's page. My home town started a scholarship and a Jenny Memorial fund.

HD Benefit

Live and Silent Auctions Benifiting Huntington's Disease - Orginazed by one of our own NYA members, Jenny Rogers! Date: Saturday, September 27, 2008 Time: 6:00 PM Place: Jim’s Home 2860 Dewdrop Place Thousand Oaks, CA 91362 Benefiting Huntington’s Disease Society of America’s Research and Patient Programs Silent Auction, Live Auction, Cocktails, Food & Live Music Please RSVP by: Friday, September 19, 2008 To Jim Hill at (818) 489-4102 If you would like to make a donation please send to: Huntington’s Disease Society of America 2860 Gateway Oaks Drive #300 Sacramento, CA 95833 Credit cards accepted– call 916-927-4400 A Special Note To Jim Hill’s Friends and Family

Tuesday, September 23, 2008

Special Olympics Bowling

I am really improving in Special Olympics bowling. My scores have upped 56 percent. Today I had a score of 91. I had a spare. The Gleaners, I will be volunteering on Tuesdays again. It is easier then me trying to do Rhythmic Gymnastics and the Gleaner’s on the same day. Make it easier. I love Special Olympics. It is so much fun. I am meeting all of nice people. Trevor started his new job today. Hopefully we can get benefits. We might get turned down for disability again. At least you can appeal with this one. I am getting sick and tired of getting turned down again and again. Forget about that. Let it slide. Accept life as it is.HD is part of all of our lives. Live with it. Live with HD. It is in our lives. Accept and move into the sunshine. The only way we can be happy, is accepting the fact we have HD. Accept it. Don’t live in denial and fear. That is no way to live. Live your life. Love your life. This is it. One life. Live it like you are dying. Have that Passion to stay alive. Have that passion to fight. Have that passion for life. Live with strength and grace. We know life. We don't take anything for granted.

Monday, September 22, 2008

Live

We upped my Epival today. I am hoping it works. I get to bowl. Learn to accept and love your life. This is all we have. This is our life. This is HD. We have to face the reality. This is our life we are fighting for. This is our life we are living for. Soon this will all be over. Soon our life will be free of HD. Just believe in miracles. We are too nice of a people to have to suffer. In the end, we will all be saved. No one deserves to die for this. No one is going to die because of this. The generations can stop. We have the technology to make that work. We can all be saved. No one else is going to die.

Sunday, September 21, 2008

HD HOPE

My meds are working less. I am irrational, angry, and having huge mood swings. Being driven insane. Scared and having hallucinations. We are thinking of upping my Epival. It is not working. They are driving me insane. Losing my motivation. Totally need something done. They have been bad for a while now. Tuesday is that meeting that might get us disability. Tomorrow I am supposed to see Adele. Tuesday I am excited. More Special Olympics. I have got some good friends already. Learn to live with HD. Learn to fight HD. Learn about our real future with HD. The one with cures and hope. That is the real future for us. Future is survival. Future is now. No one else has to die. The generations will stop now. The future is now. Hope is now. Life is now. Life free without HD is here. It is now. HD free is where we are at. HD free is already here. The cures are here too. It is all here. Life free and happy is here. No more HD. Countdown for the cure. Will stop soon. Soon is now.

Friday, September 19, 2008

Enable yourself

I am having a healthy morning. Feel good today. I m having huge mood swings now. Adele is going to advocate for me. I have a meeting on Monday. We are just are both sick and have schedules. Yesterday we waited for an hour and a half for our Special Olympics instructor. She never showed up. We all had to leave. We were all disappointed. I ran into Shirley there. She helped me find them. She knew the Legion. We are making a good slow cooker meal. I love home care. They are nice Nurses. Love your life. Live for life. Live for the future. The future is now. The hope starts now. The hope starts here. Live the dream. Never disable yourself. We are the ones that do that. We need to push ourselves. Every day before I am on here I still do aerobics. Two walks a day with Lucky. My little Lucky. He is a cutey. Keep yourself as healthy as possible. Keep your self mobile as possible. Fight for your right to stay psychically strong. Stay mentally strong. Fight both ways. Fight everyday. Fight for your right to live.

Thursday, September 18, 2008

Hope

I have been real, real confused. I forgot to how to use the VCR. Today at the Gleaner’s I forgot how to use the washer and dryer. I am getting that sick. I was paranoid. I thought someone was going to attack me. I was scared last night. Still feeling unmediated. I got scared and Trevor calmed me down. My chorea was the worst it has been. Yesterday it was crazy. I have Special Olympics starting tonight. Don’t disable yourself. Enable yourself. Learn to love your life. Let the bravery and strength come through. We can’t lose to HD. We have to fight with everything we got. Fight. Be brave. Be strong. Fight for your life. Fight for your right to live. Fight for your right for life. We are fighting for our lives. We have no choice. Every day is another fight. Every day is a fight to keep alive. This our life on the line every day. Soon it will all end. Soon ether cures will come. Soon our lives will improve. We have a future. Just keep hanging on. Hang on for dear life. Hold on tight. Hold on to your life.

Wednesday, September 17, 2008

Treatments

I am not sure if I am going to do stem cells or wait for Dimbon. I did not realize that Dimbon would come out so quickly. They both sound good. Don’t know what to do. That is fast. Maybe I can wait. Both options seem good. I am so confuised about all of them. I still have the papers for C0Q10 and Creatine studies I don’t know which one to pick. Tomorrow I have the first Rythmitic Gymnastics day. I am just so excited. It is going to be so much fun. That Dimebon is coming a lot sooner than I thought. I don’t know which one. With HD now there are so many options to choose for treatment. I am healthy today. The past tens years have been so amazing as far as advances go. Everything just keeps getting better and better. Keep that in mind. Keep that in sight. There are cures for us out there. Real hope is all here. Real life is here. A real future is here. Real treatments are here already. Live and never lose hope for the future. Live and love life. Life is what we have. Life is what we have to live. Life is what we have to hope for. Life is what we live for.

Pfizer And Medivation Agreement To Co-Develop And Market Dimebon For Alzheimer's And Huntington's Diseases Treatment

This is just so amazing. I didn't think this med came out so quickly. I think I am going to wait and take this. This should be out in a couple of years. countdown for the cure will stop really soon.

Tuesday, September 16, 2008

Special Olympics bowling

I had a great day at the Special Olympics bowling. It was so much fun. I love it. I love going. We registered last night for Gymnastics. I made some good friends there already. I got a better score. Just got better and better. Saw Doctor Walker and got the assessment done. Can fax them in. We have to get our papers done by Julie Gyles, the head home support Nurse here. We should get disability some time soon. They need a void check to send us the money. I saw our VCR in flames today. It smelled like smoke. Nothing was happening in real life. It was a hallucination. It was so real. I got Trevor to look at it. Accept your life as it is. Accept your future. Accept the reality of hope. This is real life. This is real HD. This is real hope. This is a real future. It will be here sooner than later. Real cures. Real hope now is all around. Future is now. Live for the now. Live for the future. Live for life free of HD. Not too long to wait. The future is now.

Monday, September 15, 2008

HD Benefit

Nancy Fiore, Mark Smrtnik's Mom, asked me to share this with everyone, writing:
This just shows what a wonderful community we live in! My son touches so many people and they continue to support us in everyway possible. I hope you will pass this info on just in case there are HD families in our area on the 27th! Thanks, Nancy Fiore
PS We're also having our 7th annual golf/dinner fundraiser on Thurs, Sept 25th and that too looks like it will be another successful event. Anyone interested in attending can find the details here: http://www.hopeforhuntingtons.org/home.html

Illinois area Band -Jam for HD Research & Illinois CoE
The Highwood All-Stars & Friends
Saturday, September 27, 2008
8:00 PM till ?
Highwood BarThe Alley Highwood 210 Green Bay Road
Highwood Il 60040Phone: 847-433-0304
Minimum Donation at door: only $5.00!

Cancer Cure for HD

This is a cancer drug that works for HD now. This is a great breakthrough. This is amazing. So much hope for all of us.

Meeting with Adele

I have a meeting with Adele on Wednesday. She will give me the info on how I can do stem cells for free. Airplane info and all of that too. I still believe I want to go to China. Without coverage for some organization it would be so expensive. Tomorrow I get an assessment for the disability. I can’t believe we will actually get some money now. Today I am having bad chorea. Last night we had dinner with Trevor’s Dad again. I was having hard time eating. We went to a Church breakfast yesterday. We were invited by a friend of Trevor’s. I had a hard time eating there. I get anxious when it comes to eat in front of people. Try not to worry so much. Worry gets us no where. The cure is here. It has showed up. Stem cells are here to stay. They are here to cure everything. They can cure anything. They can be used and used for real good. They are here and now. Our cure is here and now. Countdown for the cure might end now. No one else has to live in fear anymore. I am so excited. Tonight I register for Rythimtic Gymnastics. I love the Special Olympics. It is so much fun. Everyone is like me there.

Sunday, September 14, 2008

Bronze Award

I won an international Afallon's Bronze Page award.

Saturday, September 13, 2008

Learn from Life

I am having another HD free day. Yesterday I was so anxious. I had so many anxiety attacks It was insane. The past two days I have been very confused. Especially when I was doing aerobics. Really hard time focusing. On Monday I get to register for Rythmitic Gymnastics. I am excited to do more Special Olympics. We need another Doctor assessment to get disability. We also are getting a home care assessment too. Katherine is getting lazy again. She is leaving a huge mess again. HD is temporary. Believe that a hundred percent. Believe in life. Believe in the future. Believe in life. Believe in miracles. Believe in our future. It will come sooner then later. Don’t let anyone tell you otherwise. Live and learn from HD. Learn from your life. Learn for your family. Always learn about life. Always learn about ways to fight. Learn all about your HD life. Learn about your future with out HD. It is here and now. This is our life. This is real. This our real cures. Live your life. Never give up ever. Never give up living. Live your life. It is all we have is this precious gift, life. Life is the most precious gift we can ever a have. It was giving for a reason.

Friday, September 12, 2008

Hope Flows

Today the Gleaners had a 25th anniversary breakfast. I showed up with my Nurse and had breakfast. It was so busy there. There was tons of people. It was packed. There was a line up. I think Trevor would love volunteering there. I love it. Today I am HD free. I need my meds upped so bad. Getting really angry. Trevor says he will always stand by me. I know he would. He knew what he was getting into. It is just breaks his heart to see me get sicker. Tonight we got dinner with Trevor’s Dad. Live for the now and the future. Take very day at a time. Every minute at a time. Get through anything that way. Every minute at a time. Our life is here. Live your life one second at a time. Live for your future. Without HD. It will be here soon. Countdown for our cure. It is here. It is ready. Jump in. Jump into the future. Jump into the now. Jump into the then. Get hope. Hope is now no longer hiding. It is here. It is now. The future is now. We are now free. We are soon free. HD will be no more. Live your life free. Love your life without HD. No more generations have to get sick. We can stop HD.

Thursday, September 11, 2008

Crazy Meds

We are going to get disability finally this month. I talked to Shirley I want to be resuscitated. I do not give up. I want to live as long as possible. I had a busy day volunteering at the Gleaners’ today. Trevor wants to volunteer there too. I love volunteering at the Gleaner’s. It is really fun in the toy section. I enjoy it.Shirley came over and made yummy meat loaf. We are excited. I totally need something to happen to my meds. I feel unmediated.My brain fog was bad at the Gleaner’s today. My chorea was bad today too. Since home care has come I am now making dinners for Trevor by myself again. I feel like I got that confidence back. I used to be a good cook. I did tons of research for a week trying to find the right stem cell company. I would not put Gary and I’s lives on the line. These are top guys. They have found more research on the China then anywhere in the world. Countdown for the cure will end soon. Just believe in this. Believe in our future. It is all we got. Hope is all we got. Live your life. Love your life. Love HD. Accept HD. It is here. It is not us though. This our hope of hopes. To have a life worth living. Make a life worth living. You have to accept HD. Move on.

Runs for the cures all across America

Get out and run for the cure. Run for HD. Run for our lives that are on the line.

Wednesday, September 10, 2008

Looking at China

Their site
Ann article on them

Looking at China

I have done my stem cell research. I found one of the world's best stem cells companies in the world. They are called Beike Biotechnology. They are on the worlds best site. I looked up info about them. They seem really good. I am excited. I still need to find out info to get me there for free though. I am still struggling today. I believe this is what it will take for us to get cured. Countdown for the cure will end soon. It is here. Live with your future. The future is here. We are here.

CHINA STEM CELLS
The World-Leader in RSC treatments for neurological and autoimmune diseases: No center in the world can match this conglomerate of hospitals for:Number of Diseases treated, and Number of Patients treated They use only cells that actually work, disdaining embryonics and foetal cells for SCIENTIFIC reasons, not because of moral issues. That makes me and them an army of two shouting that argument.Primary is autologous stem cells from the patient's own body. Second is fresh cord blood stem cells that are made to order. These cord blood stem cells are never frozen as they believe that even a cryo freeze can lower the viability and quality of the Repair Stem Cells.Recently, in response to dozens of stories in the press about Western patients being helped by Beike, the science company behind StemCellsChina.com, Western doctors try to give the impression that the miracles performed daily by Beike's doctors are "unproven." Our Chairman, Don Margolis, recently responded to one such article. Here is an extract:As the article says, Beike uses both cord blood stem cells and autologous (from the patient) stem cells. They intentionally disdain embryonic stem cells, NOT for moral reasons but because as far as injecting them into sick humans goes, they are scientifically worthless. In that sense they are light years ahead of the West, whose own anti-scientific standards include ignoring what works and fighting for funding for what does not and can not work, i.e. implanting embryonic stem cells into the bodies of sick humans. The article's headline calls Beike's work unproven. They are unproven only by those whose standards force our patients to either trek across the globe for treatment or stay home and be told that, according to those standards, their suffering is untreatable. I prefer to believe that it is those self-serving anti-scientific Western standards which are unproven, not Beike's treatments. Here is the long list of stem cell treatments offered by Beike:Alzheimer's Amyotrophic Lateral Sclerosis Ataxia Cerebellar Ataxia ( Includes Type 6 ) Hereditary Ataxias Spinocerebellar Atrophy and Spinocerebellar Degeneration Acquired Ataxia Machado-Joseph disease Olivopontocerebellar Atrophy Early Stage Ataxia Telangiectasia Autism Spectrum Disorders Rett Syndrome Absence of the Septum Pellucidum Acute Disseminated Encephalomyelitis Agenesis of the Corpus Callosum Acquired Epileptiform Aphasia Aicardi Syndrome Bell's Palsy Brachial Plexus Injury Brachial Plexus Birth Injuries Brown-Sequard syndrome Carpal Tunnel Syndrome Central Cord Syndrome Central Pain Syndrome Central Pontine Myelinolysis Cerebellar Hypoplasia Cerebral Atrophy Cerebral Hypoxia Chiari Malformation Cerebral Palsy Chronic Inflammatory Demyelinating Polyneuropathy Duchenne Muscular Dystrophy Encephalopathy Epilepsy Early Infantile Epileptic Encephalopathy(Ohtahara Syndrome) Glycogen Storage Disease(Pompe Disease) Glucose Transfer Disorders Guillain-Barr? Syndrome Huntington's Disease Hypertonia Hypotonia Infantile Spasm Kennedy's Disease (Bulbospinal Muscular Atrophy, X-Linked Spinal and Bulbar Muscular Atrophy) Landau-Kleffner Syndrome Lissencephaly Meningitis and Encephalitis Motor Neurone Disease Primary Lateral Sclerosis Microcephaly Multisystem AtrophyIncluding Type C Multiple Sclerosis Myoclonus Myoclonic Encephalopathy of Infants Myopathies Congenital Myopathy Muscular Dystrophy Neurotoxicity Optic Nerve Disorders Septo-Optic Dysplasia Optic Nerve Hypoplasia Optic Atrophy Damage to the Optic Nerve Ischemic Optic Neuropathy Parkinson's Disease Perisylvian Polymicrogyria Post-polio Syndrome Schizencephaly Spastic Tetraparesis Spina Bifida Spinal Cord Injury Spinal Muscular Atrophy Stroke Transverse Myelitis West Nile Virus West Syndrome Whether or not you see your diagnosis listed, always write directly to this address for further information about any neurological disease:

BEST CONTACT INFO:<kirshner.ross@gmail.com>

World's best site.

http://repairstemcells.org/StemCellTreatmentCenters.php

Tuesday, September 9, 2008

Olympics bowling

I have been still having problems with my meds. I am yelling and snapping. Something needs to happen. I have been noticing my HD is getting worse. I have not slept good in two days. Today I had Special Olympics bowling .It was so fun. All of the people are so nice there. I had so much fun. I love bowling. I got a couple of strikes. It looked like another person had a movement disorder too. I am so glad I got involved. It is so fun. I love it. It is that time to put anti Steven Harper signs on my window. That’s what I did. Harper is killing Canada. He is killing all of us Canadians. Don’t disable and enable yourself. You can run and play too. Join the special Olympics too. Run around. Keep running around as much as possible. Don’t lose that. Run and live. I saw a bunch of people who thought the same me today. They were very inspirational. They are sick and do not give in either. Move. Keep living. Everyone cheered each other one on. There was no completion there. I sign up for the Rhythmic Gymnastics on Monday. I start on Thursday. Don’t give up. Enable yourself. Don't lose your life.

Vitamin B12 Key to Aging Brain

Monday, September 8, 2008

Electrical therapy for dysphagia

"Dysphagia, or difficulty swallowing, is a sorely neglected medical condition that affects 15 million Americans," says Sara Oxton of Empi Recovery Sciences (a manufacturer of medical products). "Dysphagia is caused by neurological disorders or disease, head or neck cancer, or even HD. Patients need to re-learn how to swallow food, drinks, and medication." Empi created VitalStim Therapy, a non-invasive external stimulation device that Oxton says helps "re-educate the swallowing muscles." Trained speech-language pathologists apply electrodes to the muscles of the throat, stimulating the muscles and promoting the swallowing reflex.

Meds Not Working

I have been feeling really unmediated for the past four days. Really irrational, really paranoid, moody, depressed. It is horrible. Trevor is hurting. He does not want to see me struggle. He was worried again about losing me. I told him stem cells. I am meeting up with Adele sometime next week. Get some more information from her. She was our getting a treatment for her RDS. I am so excited. Tomorrow I have to start the Special Olympics bowling. I am super happy about that. We were still thinking of the COQ10 trail. Trevor is working too much to find a new job. He is looking part time. He can study and get certified. We can get that full 1200 a month. Dr Walker needs to assess me for disability. Home care is going to reassess me to. Today I am having bad chorea. My dementia is getting worse again. I am having problems remembering anything. Sometimes I can’t think. This is the time to fight the hardest. Fight HD the hardest. This our life on the line. We need to fight for our life back. I believe stem cells are the way back. We can win this war. We can win this battle. No one else has to die anymore. Fight and stay alive. Fight for our cure. Stay alive for our cure. Survive for our cures. This is a battle that now we have won it. When I get the info about the programs I will scan it on here.

Saturday, September 6, 2008

Stem Cells

I start Special Olympics on Tuesday. On Tuesday we have a meeting to get some disability. I have looking at stem cells now like crazy. I need to still here back from Adele about the information. She has all of the stem cell contacts. Today I have been so sick. I had a nap. Just exhausted. I think am coming down with something again. I get every cold and flu here. No immune system. I believe a hundred percent in stem cells. On Sept 15 I register for Rhythmic Gymnastics. So excited about that. The past three days I have been a bit irrational. Struggle with mood swings. Up and down. Live your life. The cures are here. They are real. They will cure all of us. They are our miracle. The last generations are now. No one else has to die. It is here and now. The treatments are here and now too. Everything is coming in here. It is real. It is now. Now we have the makings for our future. We have a future without HD. When I get more info I will tell you guys where to get stem cells. I just wished I knew the other countries programs to pay for it. When I started this I was accused of giving you false hope in that no cure article that Lex Luther sent after my positive living article. Three days after. It is not false. This is a hundred percent real here. Stem cells are here. Treatments are here. Countdown for the cure will be over soon. Stem cells are our future. They are here. Everything on here was not false hope. It is real hope. I love you people for coming here and letting Lex know that we all know different.Lex has tried to discredit my site. They are a high up HD respected official. I am to nice not to tell everyone who this person is. We know we have a future now. I made that article to show people for the first time hope. This our hope. These are cures. I love everyone that comes here. My HD family. We need more Sue’s out there. I need to save lives here.

Friday, September 5, 2008

Pro Stem Cell Banner

I added to my main page. Click it and sign a petition to stop George Bush form keeping his cruel stem cell policy.

HD Benefit Concert Friday

This is one of the few HD fundrasier we will be having in the Torrance/Southbay Area. So this means GET A BABY SITTER and show your support.Eternally Grateful,Desirae HUNTINGTON’S DISEASE FUNDRAISER and RAFFLE W/Special Guest THE BIG DIPPERS. They are a Classic Rock cover band. Date/Time: Friday September 26, 2008 Time: 8:00pm - 2:00am Street Adr: 1625 Cabrillo Ave. City: Torrance State: California Zip: 90501 Notes: 21+ Only! PLEASE COME OUT FOR THIS WORTHY CAUSE! There Are Going To Be A Lot Of Great Things Raffled Off!

Added Stem Cells to Research Page

Added stem cells to my new research page. Still healthy. Last night I was a lot sicker than I had been. My dementia was bad. My chorea too. We ran onto Adele last night. She is the one with RDS, a rare nerve disorder last night. She looked perfectly healthy. She is now cured. She had to fight for 12 years. So much pain. I am going to meet with her. She has all of the information to get the stem cells. And everything covered. She even went to a Swiss Neurologist for help. She told me of a Doctor tells me there is no cure. Don’t believe it. I will do all of this with Gary. I want to help him too. We were all happy to hear about this program. I believe this is what Mom wants us to do. I feel her guiding me to stem cells. Like I told you all it would be the first cure. It is. I will blog and tell you guys about all the processes. There are tons of good programs here that will pay for our cures. I feel like this is real for me. Everyone on here try it too. Get cured. This is it. I have heard people with HD getting rid of ten years of damage with stem cells. This guy sent me an email. Me and Gary can do it together instead of alone. I want to be booked with Gary. He is excited too. An actual cure. Try this. It is our real life cure. They have the technology now to cure HD and 90 percent of all illnesses.

Thursday, September 4, 2008

Another HD run for the cure

This run is being made for her HD mother. She is looking for sponsors.

New Research Page

Decided to put this up today. I had the idea for a while and finally decided to put it up.

HD Free Week

My HD symptoms are still less today. For the past week I have been healthy. There is hardly anything going on. At my Dad’s I thought I saw aliens. On the drive home I thought I saw more. I saw swirling black scary clouds. Trevor told me to laugh at them. They are getting more real and more scary. Shirley just was here. Coming half an hour earlier to take Lucky for a walk. I don’t want to nearly get run over again. My brain fog is getting worse. I get caught in these little trances where I can’t move. My eyes lock. I can’t move. When Trevor calls my name I can focus on him again. My eyes have a hard time focusing on people now too. I had so much fun when I was at home. That disability covers dental and med costs too. Today Trevor gets his forklift ticket and he is leaving his job. Accept your life. This is it. This is life. We have HD. We have it in our family. We will get sicker. That’s how it works. We get sicker and sicker. We aren’t going to die anymore. We will get cured and live a long life. We can get there. We are there. Countdown for the cure will end there. Accept HD and move on. Denial is not the way to deal. That is not the way my Family worked. If my family was in denial I would not be doing this. By grade 6 I knew I had a fifty shot of getting HD.

Wednesday, September 3, 2008

Scott Midyett Update

This was sent to me from a friend. Scott's HD family is at a high risk of suicide. That is why I go to HD support groups and help anyone in distress there. I lost one of my best friends to suicide. We have the highest rate of suicide for any illness. This is why. I am glad his Doctors did something for him. This why I will never stop. Everyday you can come here and have that little hope for a better tomorrow here.

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Finally back. What a holiday. I helped my Dad and his girlfriend Karen move. They moved to Leduc. It is an oil town near Edmonton Alberta. Dad was kind enough to give me money for bowling. Gary wants to join the Special Olympics too. I am looking in Red Deer for him. My family is broken over our Jenny. My Grandpa was heartbroken when I visited him. My Uncle and Aunt are starting a law suit. Wrongful death suit. Nonthing would bring her back though. We are sitting and doing the disability papers. Trevor might of already got a new job. When I was failing all of the HD tests Trevor was in tears. He does not want to lose me. He loves me. I told him we are going to grow old together. If Trevor’s new job will let him I will start the COQ10 trail. They also are starting Creatine in January. I might join that. I am hoping his new job will let him. Gary is still working. He has majorly adjusted. I got to see my Step family too. Got to see my best friend in Calgary Mandy. I was healthy the whole time I was home. Except for a bit of Dementia. I had a fun trip home. I missed my family. It was good to see them. I start the Special Olympics this month. If we get in the study, they will give us free gas cards to get to Calgary. It will be every month. It runs for five years. I am hoping that Trevor’s job will allow for this. There is a Canadian program here that will fly you down to California for stem cell treatment. They will pay for someone to go. It takes six months. Trevor knows a Lady here that had rare Nerve Disorder and got cured there. They told her she had no cure. I talked to it with my family. We might do it. I told you guys that Stem Cells might be the first cure. I believe that a hundred that it is. This is real hope. This is real hope. I am excited for the future. The future without HD. Countdown for the cure will end soon. HD will end soon. Stop the generations here. Everyone help by being Guinea Pigs with me. The researchers can’t test on them selves. Find cures. We have to help. Help ourselves and others. The cure is here. It is real. The countdown will stop soon.


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