Huntington's disease leads to restaurant ban

I usually never try and find a negative artices. This is just so shocking and wrong for this poor woman with HD. To get banned from your favourite restaurant. At one point I was embarrassed to eat in a restaurant . I thought I would embarrass my husband's parents had to put up with that. They said they would love me any way. We could all get banned for being ourselves. This really upset me. Anything where human rights are violated. We deserve the right to enjoy what we want when we want. We have basic human rights.

http://www.thisislocallondon.co.uk/display.var.2387631.0.0.php

So excited for the Special Olympics

Today my Lucky’s Godmother came over. I love my little Lucky. Everyone knew I was getting him but me. She is my best friend. Today I volunteered too. I volunteered at the Gleaners. They are so funny and I am happy to be there. We also donate toys to the humane society here. They give free toys to those dogs. I love any animal, I love the fact they do that. It is the have so many different charities there. I am having halluncations again Last night I heard people partying. I saw a fire hydrant turn into a person. I did not have them for the longest time. Now they are back. I have had bits of healthy periods and bits of bad HD.I am going camping on Sunday for my anniversary. So excited. I can’t believe we have been married that long. Today we still have dinner with Alice. I stepped up the intensty of my aerobics to train for the Special Olympics. I feel for them downstairs. I might just fall through the floor. I was bouncing like a bunny on their roof! At least it is Godmother and her Mom down there. Totally check out Danny’s HD youth site in my links section. There aren’t many of us that have HD that run things personally. You can gain from us. We all are fed up with the matter of fact. That is how that is. This is how it progresses. We have no need. We need hope. Real hope. Not that we are going to die. That does not give us anything but heartbreak. We have the highest suicide rate. We need to do something to change it. That is why I started this. Just one life that I have changed is good. You lose someone form suicide like I had. You try as hard as you can not to lose more people. I understand. Danny understands too. HD, we know the score. Live with us. Live in the dreams of hope. The hopes of tomorrow.

Trey Raises Awareness For HD

Trey is accepting HD with his wife. They have started a golf Tournament to raise awareness and raise funds. Check it out. I think it is wrong to put our hopes on this poor guy. We should not be excited for celebrity. We should feel for another one of us. I am glad they have accepted it.

http://www.myspace.com/treygrayhd

Another Award

I won another international bronze award. It is Web Bronze Web Design Award. Bronzes are good enough for me. Thank you. That is now 24 international awards. On our two year anniversary we are going camping. Next Sunday. We are going to leave Lucky in the Kennel. We are going to go camping down by the Kottney Lake. Trevor asked me what I wanted to do. I wanted to go camping. I have been feeling irrational the past three days. We are in for the long haul. Even though I am getting sicker. Tomorrow we have dinner with Alice. I am so excited for the Special Olympics. Count down the days. Countdown for our cure. I go to the Gleaners tomorrow. There is tons of hope for all of us to gain. Tons of happiness. Tons of forgiveness. Believe and it will come. Dream and our cure will come. Just take your life and make the best life you can. Dreams come true. Dream hard enough. Our cure will come true. Believe in that. Belive In the goodness of our lives. Never compromise on our life.

Special Olympics

I bad night, and was hallunctiating. It was so scary. I had a scary night. I went and had fun volunteering. There were a lot of toys to sort through. I will be registering for the Special Olympics in the end of August or early September. On the eigth Gerry will tell me what days. We all get training. We get then the chance to compete in Creston here. If we are good then we get to the nationals. I am so exited. I think I will be able to do it. I am hoping I will be here to register. I am going to see my HD in September second and third. Start the COQ10 trials. Go home and see my family. I think I might get Trevor’s Mom to register for me. I think I want to do all three. Use your body as much as possible. Don’t invalid yourself. Keep on moving. Keep on fighting. We are the ones that can fight for our right to be happy and love life. Soon we will have our cure. Until then we have to live with HD. Fighting for our life. I am so happy to be in the Special Olympics. I am doing it for every person that has HD. I am doing this all for you.

Another Walk For Our Cure

This walk is happening.

SUNDAY
MAY 17, 2009
Registration @ 9:00 AM
Walk Begins @ 10:00 AM

We Walk---RAIN OR SHINE

Danada Forest Preserve
Wheaton, Illinois

Planned for next year. Try not to forget.

http://www.hdwalk.org/index.html

More Updates

I updated My Story. I fixed the text in a lot of the pages.

Another Run For Our Cure

They are running again this year. Donate if you have the money.

http://www.firstgiving.com/4teampapa

River

We have the internet back. We switched providers. I have been so sick. My Chorea has been so bad. I have had problems with my eyes. I am tripping like crazy. Tripping so much. My main Nurse is on holidays. They are ready to go to the states and get us some food. It is so much cheaper. My 2 year anniversary is on the 4th of August. It felt like we just got married, not two years. We are excited. I got sick 6 months into our relationship. Who knew that I would get married. We just wish we knew each other before I got sick. He knows 6 months of that. I always pictured myself getting married young. I needed someone to look after me. Trevor is that for me. Tomorrow I get to find out about the Special Olympics. Don’t make yourself an invalid. Move around as much as possible. We went to the river yesterday. Lucky was like a little Beaver. It was so cute to see him swim. He loved the river. Loved swimming in it. The river is where we got to swim. It is a popular spot in Creston. Fight for your right to be healthy. Don’t ever get that out of your head. We deserve this. Everyone deserves a life worth living. Make it for yourself.

New HD Link

This is a new link. This person also has HD. Started up a community. He is one of us. Check out HD Youth on my link page. Tell him what you think. Check it out. Brand new.

Huntington's Disease Sprint & Olympic Distance Triathlons

They are having a Triathlon. To fight HD. It is happening on August third. The day before my two year anniversary. It will happen in Florida. Hopefully a lot of people can donate. Let's make this our battle for us.

http://www.active.com/page/Event_Details.htm?event_id=1570501&assetId=2f8c6e57-d417-41c7-ace6-62c5080532d1

Bad HD day

I am sorry if these blogs are not the same text. I can't tell here. Everything is messed up. Trevor's Mom will let me use her computer until we get our net back. Evil Telus. I can't veiw my site right here either. They need Trevor here to fix these computers. I walked here fast and had the worst Chroea ever. I am so brain fogged and confused like crazy. I am also have mood swings. I used to use my computer to help me have a good distraction. Now I won't have that. I have a bit of depression for the past three days. Still looking future forward though. We all need to look future forward. We need to believe deep down that HD will not take the best of us. Don't let it take that. We have to fight to have the best of life. We deserve these things. We deserve to be happy. We truly do. Deserve the best out of life. Don't forget that. Fight HD. Fight for our future. We will have to fight away everything for our right to live. We know that fight. Only we know how everyday is. HD family. We should all be untied beacause all fight the same. We all know the same. Untited we can fight. Untited we can't fail.

Blogging from the library

Telus took away our internet and phone. My OT came and we could not buzz them in. We got the phone back. Not the net. I will be blogging from the library. Still everyday. They sent the notice to the wrong apartment and took them away any way. Even though it was Telus's fault. I had such a bad HD day today. My Chorea was so bad. I found out one of my at risk cousins now has a kid. Married and a kid. Hope he will not end up with HD. So sick. Very, very confused. I have never been more confused ever. My blogs might be a bit short. I get one hour here. So much to do in one hour. I hope I get into the Special Olympics. Every one fight the HD througth exercise and good health. The more active we are they better and faster and harder we can fight HD. Fight it as much as we can. Live your life the way we should. Fight it all ways. Fight the only way. Exercise will build the neurons that we need. Fight. Live for the fight. Fight for the right. Fight for our life. Fight for our right to have a good life. We deserve the right to be happy.

Special Olympics

I volunteered today. I had to leave early. My chorea was getting bad. I was getting tired. I am now getting blister packs from the pharmacy. They messed up. There put my Zyprexa in the morning instead of the night. Soon as I took it I was on my balcony, sitting in the sun. Next thing I am sleep. I felt so sedated like crazy. I had no energy for the things I can do. I might end up joining the Local Special Olympics. I was taking to one of the nice workers. She gives out to the Special Olympics. The Gleaners supports them. They were talking about it. She will give me the info. They accept any age. They do bowling, Tee Ball, and Rythmtic Gymnastics. I want to do gymnastics so bad. We will see if they accept people who have HD. Gerry is pretty sure. They are so good at the Gleaner’s. They let me come and go. If I am sick. It is no big deal. I hope I can get into the special Olympics here. I used to love to play sports when I was healthy. I felt as I got sick. I could not do them anymore. Give this a shot. I have watched them on TV. I felt they were amazing. I always wanted to compete there. The trainers and everyone involved. They know that we are sick and trying our best. We have to make the best with what we got. Everyone that goes too. They can all see that. Don’t become an invalid. Move. We are the ones that do that to ourselves.

Thunder Storm

Today was a total thunder storm day. The day we go down to the lake. The day it is storming. We had a meeting with Julie Gyles. She is trying to get us benefits. They might work out this time. Her and my Occupational Therapist and my mental health therapist all wrote letters. They are trying so hard to get us on something. I have been tripping all day. Badly tripping. Drooling like crazy. I have been having weird twitching in my eyes. I can’t focus on anything. Today I could not go to the Gleaner’s. We did hit up the food bank though. I volunteer there. They don’t care. Every day I can’t believe how much research is being down for us. Tons of good stuff going for us. Countdown for the cure. Happening shortly. It will tick and then get the alarm will stop the day we have our hundred percent cure. That will happen soon. The clock won’t tick long. Don’t lose hope in our cure. Never lose sight of what it happening before our eyes. That is the ending of generations. Gneertions will end. No one else needs to have HD. Let is stoop. Let us get cured.

Stem Cell Grant

An amazing grant of us to get more stem cell funds. Sounds promising. I still feel it will be the first cure. So close. We won't be counting long. Our cure will be here soon.

http://www.ocregister.com/ocregister/homepage/abox/article_2098137.php

Another Award Page

Today I was busy and made another award page.

Bad HD Day

I was so sick yesterday. My eyes could not focus. I have been having that problem lately. I will try and focus, my eyes will go the other way. To the opposite direction. I have been drooling like crazy too. Yesterday I was hallucinating. We went and saw the Dark Knight. It was good. Tomorrow Julie Gyles, my head Nurse will come over. I can give her that adobe acrobat file about how to care for us. She is trying to get us benefits. Any amount is better than nothing. Tomorrow we might go to the Lake. I might not be able to blog tomorrow if that happens. We are both outdoors people. Love the summer. All of these Dimebon articles are so amazing. It actually is a huge breakthrough. I can’t wait tell they use it on us. So a amazing. Countdown for the cure is coming sooner than later. This can happen. There is so much hope. This is real. This our real treatment. These are our cures. There comes more breakthroughs in this month alone. What did I say? This our year. It is our year. We can get cured shortly. Sooner than later. The generations will stop. They will stop. No one has to get sick anymore.

Another Huge HD Breakthrough

Looks like this gene therapy will work. There is so much hope for us. Countdown for cure. It will be here faster than we know.

http://news.yahoo.com/s/afp/20080715/hl_afp/healthdiseasehuntington_080715124400

Another Huge HD Breakthrough

These are coming like crazy. Countdown for our cure. This is another huge immune system breakthrough. There is so much going on now. It is hard not to get excited.

http://news.yahoo.com/s/nm/20080714/hl_nm/huntingtons_test_dc_2

Another Dimebon Breakthrough Article

Another Article on this huge breakthrough. This is so huge. This is it. I feel this is our cure. One of them at least.

http://www.sciencedaily.com/releases/2008/07/080717193029.htm

Dimebon Breakthrough

More on the Dimebon breakthrough. This is so good. This is huge. This actually works. A hundred percent to help us. What a huge breakthrough. Countdown for the cure.

http://www.medivation.com/pipeline_dimebontrials.html

Weird Day

I am having an HD free day. Everyone won’t believe what happened here today. A major druggie moved in here. Today at eight thrity someone knocked and woke me up. Some druggie was out there and slurring asking if I had carpets or something like that. I told her politely that I she woke me up. I needed to sleep. She started freaking out and yelling at me to go to sleep. I shut my door. She knocked on my door. I did not answer. She started swearing. I thought that she would break in. I was so scared my home support worker Katherine buzzed. I did not know if it was her or that woman. Katherine gave me a call. I let her in. I did not know that she lived here. I thought she wandered in. She went and did this to all 150 people that live here. Scared everyone. Not just me. My Landlord Tony came up. Nefertiti and Elyssia heard her yelling at me. They thought I would be scared. They came up. They thought with my HD now too. They thought I would be afraid to let anyone in. They came up. She got kicked out today. They are putting a hole and deadbolt on my door. I would feel better. Katherine and I took Lucky out. She walked me up to make sure I made it up there okay. What a scary day. I have to try and get over it. To stop being scared. That is the last thing we need. Let’s fight the fear together. Let’s fight HD together. We fight everything. My HD family. I am giving my awards to everyone who comes here. Everyone that ahs HD. These are all for you.

Award Nomination

I am nominated for a page 1 Design Award. They gave me a nomination badge I put in my awards page. Check it out.

Bladder Infection Is Gone

My urine result came back negative. My bladder infection is over. I am so happy. I can swim now. No more pain. No kidney infection or anything either. I showed Shirley that acrobat file form the UK HD Society. They are going to use it to look after me and know my needs. No one here knows anything about HD. Just us. We are going to show my head Nurse them when she comes here on Tuesday. I made an appointment with my occupational therapist next Friday. We get to show Amy how much more room we have here. They are a good team here. I am having an HD free day today. Countdown for a cure begins now. Let’s start the clock and countdown and see how long it will be until we are cured. Countdown the days. Countdown the hours. Count down the weeks. Let’s see how soon our cure will come. Count it all down. It will not take long until we get a real cure. This is our real life. This will be our real cure. Real hope for our future.

Right Meds

I have been drooling a bit.I feel my meds are working good. I am not that angry now. Today I volunteered at the Gleaners. It is fun. They are trying to do everything to help me volunteer there. They are sweet people there. I have to wake up at 6:30 to go there. Be there at eight. So fun. This morning I woke up to Trevor making breakfast. Alice helped us out and bought us tons of groceries. She did not want us to starve. I have a feeling I will have a bad HD day today. Lot’s of falling. My bladder is still in pain. I want the results sooner than later. They had to go to Vancouver. That is crazy far from us. We have a appointment on Tuesday about benefits. We hope it is more than 20 dollars they offered us. I am hoping we get something. Hoping for the best is all we can do. Always hope for the best. The best of love. The best of life. Hope for the best and it will come. Always have hope. Never lose sight of the big picture. Hope surrounds us. We just have to be aware and find it. It is in the sunshine. The sun covers us with hope. Never lose sight of the sunshine in your life. We all need sunshine to survive. We all need hope to survive too. Survive and live your life filled with hope.

One More Award

This one is form Beth. Number 60 for me. More than any other healthy person in a short time.

Huntington's Disease Standards of Care document

The HD UK society cam out with a new published Huntington's Disease Standards of Care document. It has everything that we deal with. How to care for the different parts of HD.

http://www.hda.org.uk/download/hda/Standards-Of-Care.pdf

Another Award

Today I won award number 60. I have won more awards in a short period of time than a healthy person. This is another international award. I won all of these in eight months. It is not about the awards for me. It is changing lives that makes me the happiest. It is constantly about my mission. My mission of hope. My bladder infection is still around. Yesterday I was so scared. I was having scary hallucinations. They were so scary. I am hoping my Occupational Therapist likes what we have done to make room here. Julie Giles and us are making an appointments to get some kind of funding. I am feeling hopeful. We have to go o the food bank on Thursday it is that bad. In 2 weeks Trevor and I will be under his benefits. They won’t give him time for our anniversary. Find the hope in your life. Take your life back. Fight for your life back. Fight for all of it back. Never let HD take your hope away. Fight for your joy. Fight for your smile. Everyone deserves to be happy. We are no differencent. We deserve to be excited about life. Be excited

Med Change

Today we rearranged our apartment. We had to make room. I was tripping all over the place. We rearranged the computer room and the bedroom. Now we have no where for me to fall. Today I also went on my first picnic. We went to the river. Trevor’s Dad and Mom were there. We talked to my DR Trew(HD Psychiatrist) and he upped my Epival. Took down the Zyprexa. The Zyprexa made me so tired. I could hardly do aerobics. Could hardly walk. Today I could not volunteer today. I was to tired. Trevor kept trying to wake me up every hour. He had no success until twelve o clock. I had to change my hit counter. Live your life. Julie Gyles, my head Nurse is good at getting people benefits. I am hoping they can get us some. All of these breakthroughs make a person breathe easier. It will come soon. The breakthrough that we have been waiting for. It will come sooner than later. We have waited so long for these breakthroughs. We are due. We are due for our miracle. Due for a future we can look forward too. One without HD. It will come. When it does it will be all worth it.

More and More and More Massive Updates

I changed the Hope Poem page.

Another Bad HD Day

I have been very, very sick with my HD. I have been falling into everything. Total brain fog. I was so sick I could not help prepare dinner today. Also my bladder infection is killing me. We should have the urine sample back, find out what is wrong. I was so sick Trevor was worried about me. I was so depressed yesterday. Today I am fighting twice as hard as I can to fight this depression. Everyday is another fight. I keep telling Trevor that we are going to get cured. It is hard not to believe with all of these breakthroughs. So much in so little time. This our year. These are our breakthroughs. Live your life. Never let HD stop you. Accept that we are the machines of our own making. Do we want to be happy and healthy? Do we want to go down that dark place? That dark place leads us nowhere. We have to learn how to give ourselves the best life we can. It is up to us. Do we fight HD? Do we fight to just smile once? That is what we have to be up for. A never ending battle. That is HD.

Another Huge HD Breakthrough

Every day there is more and more research.This is another. So many breakthroughs in so little time. Never stop believing in our cures. Never stop believing in our treatments.

http://www.hdsa.org/research/news/816.html

Bad HD Day

I am having another bad HD day today. I have been fighting a depression. Fighting everyday for some kind of happiness. We do struggle with HD. It is a constant fight. Everyday another fight. So sick. I fell a few times. Falling like crazy. My antibiotics might be messing around with my meds. They might take way from how my other meds are doing. I almost choked today. My Zyprea has me sedated today. Tomorrow is my day off of home care. I get to spend it with Trevor. He has a couple of computers to fix. Accepting reality is what we do. I am going to get sicker. I am fine with that. We need to prepare ourselves. We and our families are going to get sicker. We need to accept that fact. We are all going to get sicker. Before we get cured. Sicker and sicker. Accept it. This is HD. This is our life. This is our families. Until we get cured. It will be soon. Soon we won’t have to accept HD anymore. It will be gone completely. I wonder what other breakthroughs will come. Still our year. Still our fight. Still worth the fight for happiness.

Another Breakthrough

These breakthroughs are coming so quickly. So much hope for us. So much real unfathomable research that has been coming lately. Keep the breakthroughs coming like this forever.

http://www.hhmi.org/news/20080710mootha.html

Upped Meds

I went to see my Doctor today. They took a urine sample and sent it away to get tested. I am back on my antibiotics now. It is still around. They need to see if there is any other infection. I also got my Zyprexa upped. I was feeling angry for the past three days. We will see if that works. My HD was so bad today. I couldn’t help make dinner today. I had the worst chorea ever. Spilled everything today. I was so sick today. My whole home support team is trying to get us some kind of benefits. They are all working. We such an amazing team here. They are trying so hard to get us something. Hold on to life. Hold on to our dreams. Hold on to what we have to look forward too. Look forward to our cure. Look forward to 0ur future. It is here. Our life is now. Live for today. Live for tomorrow. Live every day. This is now. This is HD. This what we have. This what we have to make the most with. This is a real life. We have to fight for our life. Take our lives back. We aren’ t HD. We are ourselves. Remember how we were. We deserve that. Not the HD. That should not be our legacy. It should be the way we are. We aren’t HD.

Bladder Infection

I have been falling like crazy lately. My bladder infection might still be here. We are going to the hospital to see. At the Gleaner’s I felt the pain again. Every time gets worse. I have bruises and cuts all over the place. Today was my worse fall day ever. I have cut my ankles. Today I got confused doing aerobics. When I was volunteering at the Gleaner’s I got confused. I was there for three hours. I love volunteering there. My Nurses here are trying to get me benefits. My head Nurse will try and help us get some disability. I can’t work. We have to go to the food bank. The Gleaner’s has it there. It is so bad that my Nurse Katherine will go get groceries in the US. We live 15 minutes from the border. Everyone here does that. It so much cheaper. Go over to the US and get gas too. Americans, you have it good. Seriously good. Food is half price there. We need something from our Government. We are getting nothing. We don’t need to divorce to get some benefits for us. All of my home care Nurses are trying their hardest. Let’s celebrate the life we have. Let’s celebrate the life we can get. Things will work out. We will get benefits. We will get cured. We won’t have HD soon than later. Celebrate your future. Our future free of HD. Free from then hardness of life. That will go away soon. We will be free. Free of HD soon. It will be a day that we will never ever forget. Celebrate your life now. You are alive. Celebrate.

More, More and More Updates

I did my Testing Page.

More and More Updates

I am done changing My Ways To Cope Page.

More Massive Updates

I changed my family article.

Done Massive Updates

I am having an HD free day. My bladder infection antibiotics are over. We will see if it is gone. I am still loving home care. My main Nurse Shirley is going on holiday soon. I can’t believe I was actually afraid. Now I love it. Fear of the unknown. Today we claened house and made beds. Trevor needed this badly. He could not do it all. My Dad had something like this for us. One of the Minister’s Wives came and cleaned house for us. Have been so trying to redesign everything. I am hoping to making everything better. The Canadian HD foundation last visit to Calgary gave us one of those surveys to fill out. That is good. They can measure and see what we as families need. There is so much good going for us right now. Every twos days it something that can help us. Through surveys or treatments. I have been trying to get armliyss liles. They have not got me back yet. I have sent emails. Isn’t that Dimebon study amazing. We can actually say with a hundred percent that we will get cured. We can get cured shortly. This can actually happen. We can have huge amouts of founded advances of medicine. This hopefully will be the last generations. No one else needs to die. Let it stop here.

Massive Updates

I done with the HD information part.

More and More Massive Updates

I am done changing the Ways To Cope Page.

Massive Updates

I am done working on my Myths Page and My Care Giving Pages.

Canadain HD Survey

This is a Canadian HD Society online survey. They are curious about our care and quality of life. I was given a paper one last visit to Calgary to fill out. They have this online one now. A lot of people online, this is a better option. They need to know how to help us.
http://www.surveymonkey.com/s.aspx?sm=6PfwI8X3EI7n3n_2bdAqoNNA_3d_3d

Laugh

We went out for dinner with one of Trevor's friends. He has not seen him in years. Got to meet his wife. I had total brain fog the past two days. I had trouble thinking and remembering things badly. I got confused too by doing aerobics. Dropped my spoon in my drinking water. Just laugh it off. We did laundry. I put my clothes into the washing machine 2 times by accident. I was so sick the past two days. Really tired. Trevor had to cut my food today. I have not slept good with this bladder infection. Up all night peeing. Today is my last day of my antibiotics. We will see what tomorrow would be like. Is it going away? I have been doing everything I can. I have been noticing creeps of anger. Laugh everything off. It makes everything better. It is better to laugh than beat ourselves up. Laughter is literally the best medicine. This is what I prescribe. Laughter. Kill the pain. Laugh the pain away. Laugh all of your worries of your chest. I can’t believe all for the HD breakthroughs this month. That helps us feel better to. We know now that there is hope. There are reasons to laugh. There is reasons to have hope. Things can get brighter and brighter. We have to make them that way. We have to fight. Make your life worth the fight.

Massive Updates

I updated and organized My Story Page. I also fixed something in my Myths Page. A bit more on how HD does not skip generations. I went and changed every page.

Dimebon is safe for us.

This is so close to an actual cure. All of the dimebon studies are passing with flying colors. It is safe for us. We can have a good treatment here. This will be one of our miracle's. This is our year. This the announcement they had made.

http://www.hdsa.org/research/news/815.html

Hike

I had no HD symptoms yesterday. I love my meds. They are working great for me. Yesterday we had a great hike. It was so much fun. We went down by the river. Our vehicle is out being fixed. I hope my HD is less today too. It will be two years for us next month. I talked to Gary. He was at the conference too. My bladder infection should be over in tomorrow. I am having an upset stomach right now. I was doing aerobics and felt sick yesterday. He should of said hello. It is good that my Dad knows I am in good hands here. I am the only patient they have here that has HD. This is sad I can’t join the fall fair. We have our appointments then. Never let HD take you hope away. We will get cured soon. Do you see all of the breakthroughs. So much going on. So much happening. We can get cured sooner than later. Plan your future. Plan your life. Plan for our miracle. It will come. I am hoping I can get in to the COQ10 study. The more we do to get into trials. The more we can help all of us get cured. The researchers can’t test in themselves. They can’t. We need to step up. I had fun with Trevor the past three days. He hardly gets one day. Three days off. Hopefully he will be less burnt.

BBQ

I had such a busy day today. We had a family BBQ here. Trevor’s cousin Laura was graduating. My step sister Becky also graduated this year too. A lot of grads going on. The BBQ was fun. It is good to have three days with Trevor. He works all of the time. It is good to have us time. On August 4th we will be married two years now. It does not seem that long at all. I am excited. Trevor’s car is being looked at. My HD had been bad today. At the BBQ Trevor got me some food. He has to cut everything for me. I can’t cut my meat. Yesterday we had dinner with Trevor’s parents. We are supposed to go for a hike tomorrow. There is a hiking club here. We are going to join. There is not a lot of pain in my bladder now. I will have to take a urine test when I am done my antibiotics. Hope fully it will be gone then. No matter what comes our way, lives your life to the fullest. Don’t come up with reasons not to live. We have one life to live. Until we are cured, we have to live with HD. Have to accept HD. Not for long though. Not for long at all. Hope surrounds us every day. We just have to find it.

Dimebon Breakthrough

The Dimebon study will release their study. Let us know if the med works. Hope it does. So much hope. In so little time. Every two days there is something else breaking that we can be hopeful about. This is our year.

http://investors.medivation.net//ReleaseDetail.cfm?ReleaseID=319615

HD Meeting

We got my blood taken. I always get so scared. We had that huge meeting at 12 o clock. It was put together by a social worker in Cranbrook. He spent all of the time organizing the whole meeting. My home care head Nurse was there. My Occupational Therapist was there. Trevor’s Therapist. My therapist, there too. My mental health advocate was there too. They had my HD team in Calgary in they were part of it too. My Dad was on there to in Alberta too. My Doctor Walker could not make it. It was so helpful. They went over meds and about me getting to be part of the C0Q10 trails. How to deal and how to plan for crises. We made appointments in September to see everyone. We will talk about the trial then. We told them no more serqiul. All of the Doctors are pleased with what I am on now. It was a big help. I was in tears and thanked them. Next October we will have another one. We have a great team. They do not know HD here. They are trying there hardest to learn about it. The conference helped them learn more. It helped so much. I was really sick today. My HD was so bad. I had hard time seeing people. Sometimes I have a hard time seeing. My antibiotics are making me less sick to my stomach. I hope this bladder infection goes away. Trevor gets three days off this weekend. He can actually rest now. Have a good fourth of July. Accept HD. This is HD. This is real. It is here on our face. We can’t avoid it. We need to talk about it. We need to talk. In Creston they have a fall fair. All for the diseases. We can have some set up. I am going to enter something about HD in this fall fair. Let people know here. Let people know. Let people help us get our cures. Accept and enjoy HD in your life. Accept and enjoy everything. Trevor and I made dinner for the fist time last night. It was fun. I am getting that confidence back.

Bladder Infection

Last night we went to the emergency ward. I was out of my Zyprexa. We had no new prescriptions. We had to get some somewhere. I have had pain when I urinate for two days now. Last night I found out I have a bladder infection. I am on antibiotics. They make my tummy upset. This is HD. I get everything now. My Mom had a couple too. I puked this morning and could not go volunteer. I could not sleep well. I was urinating all night. I would go asleep for an hour and wake up and pee. I took my anti biotic and got sick. I am drinking water like crazy. Nefertiti and Elissya took me out to get my meds and some pure cranberry juice. It is good for bladder infections. Drink lots of water. Tomorrow I have to get my blood taken. They have to see my blood level for my Epival, to measure everything. We have that conference at 12 here. Then to follow that we have an appointment with my DR Walker. We are going to review my Meds. We are also having dinner with Alice, Trevor’s Mom. Happy Fourth Of July to all of my American friends. Have a great weekend. Never let HD take your fun and laughter away. Laugh off everything. Everything that goes on. Just laugh it off. Smile at it and the bad will go away. Laughter is what keeps us going it going a long fight. Sense of humor will help you got through a lonely night. We laugh everything off here. That is how my family copes. Laughter through the darkest times. When it is needed the most.

Day After Canada Day

Added more pictures today. Mostly of us with animals. My family loves animals. They are our babies. Lucky is ours. Trevor’s parents love their dog too. All of us love animals so much. Our Jenny a bit more than the rest. We have to get our Lucky in for a new haircut. That is our little boy there. I am so glad to have him. He is so cute. I was severely allergic to animals. I would play with them for a long time. I would always break out in hives. I can’t resist an animal. I am not allergic to Lucky. He is a hypoallergenic dog. I looked after the kittens they got in my practicum Father Lacombe Home in Calgary. They got some kittens. I lived 5 minutes away. I had to go there 3 times a day. They did a news story on how animals help the seniors. I used to take all of my patients to see the kittens. Everyone needs an animal. I have been scared the past two days. I was out watching TV. Got scared and ran into the room where Trevor was. I have been HD free now for a three days. They did end up with fireworks last night. We heard them go off. We watched them out of our window. They last for a half an hour here and are spectacular. Way better than Calgary. Have fun on the fourth. Our meeting is at 12 that day. So we will have our conference then. Enjoy these times. Enjoy life. We are not HD. Enjoy life. Never let HD take the joy from your life.

Another Breakthrough

This a Dementia breakthrough. It is supposed to help all people with dementia. We are getting all of these breakthroughs like crazy. We will be cured shortly. This is still our year. We are still getting all of these breakthroughs. We can have our future back.

http://www.medicalnewstoday.com/articles/112682.php

Happy Independence Day

2 More Awards

I won two more awards. I was having trouble finding some that I did not already have. I found a bunch. They liked my site the gave me two of them. Thank you.

Happy Canada Day

Last night I thought I heard people breaking in. I swore I heard them. Today I volunteered at the Gleaners. I was there for three hours. We get everything done early and had to go home. I am having another HD free day. No chorea or anything. Our Canada day is thunder and lightning. I am still feeling my meds are working great. I hope The Fourth Of July is not like this. For all of you Americans. Hope it is better. It has been really hot here the past three days. I live in the hottest part of Canada. Learn to live. Just simply live. To the best of your abilities. Live. This is all we get. We have to live unabashed. We have to get a passion for life. To survive. Get a passion for our HD life. Get a passion for our future. So long, so sick. So cured soon. Every breakthrough gets closer. Every day gets closer. We can be free soon. We can live HD free soon. Count down for our cure. Countdown for our future. We have waited so long. Now is the time for real hope. Life with hope is what we need to live. Just imagine. Our future. HD free. We can live for our cure. Survive for our cure.