Kiwi

My boyfriend and I are coming up on our three year anniversary. It is tomorrow! I am so excited. This is the best relationship I have ever had, and I am glad that we made it through another year.

Not sure what we are going to do yet. My dad sent us to Ireland when I got my Master’s Degree, and so we went on our second anniversary. That has made this year seem lame. We were like, “Well, last year we went to Ireland. This year we can see a movie?”

It is okay. As long as we are together I am sure it will be wonderful!

I almost forgot to share my getting hurt story from vacation! Everyone loves those!

So, anyway…

I was playing on the trampoline at my sister’s place. I know, already off to a bad start! So I’m on the trampoline with her roommate’s daughter, who is like three. I was holding her hands and jumping with her. She decides to tackle me, so I play it up like she really was squishing me with her two pounds of fury! While I am laying on the trampoline she tries to sit on my face!!! Diaper and all. Instead, I snatch her up, and carefully slam her into the trampoline on her back. She giggles a lot.

Then I tell her, “What is that?” pointing at her arm. She says, “My arm!” So I say, “What are those?” pointing at her fingers. She says, “My fingers!” So I ask her, “What are fingers for?” She looks at me confused. I inform her, in my best scary aunt voice, “Fingers are for eating!” and I make like I am going to eat her fingers. She laughs till she is snotty.

So then I ask her, “What are those?” pointing at her toes. She is on to me and starts to giggle before she can answer. I say, “Toes? Are those toes? Toes are for eating! Nom Nom Nom!!!!” She stops giggling and straight faced tells me, “My toes are too dirty for eating!”

This is where I tell her, “Hold still! This is important. Don’t move!” So I scoop her up in my arms and step off the trampoline onto the plastic table that serves as a stair case.

The table implodes! My leg is luckily not broken, the child is luckily not dropped, and I didn’t freak out. I kept my cool, pulled my leg out of the wreckage, and continued on my mission. All I could think was, ouch! and don’t freak out or she’ll freak out.

I get her in the house and inform my sister that clean toes must happen so that I can eat them. There is a lot of giggling and nom nom nom!

In the meantime, my shin is completely bruised and there are bruises on the sides and back of my knee from the table carnage. Good news is the table collapses all the time, and was easily fixed.

I got three Black Moor Goldfish today, and they are the silliest fish I have ever owned. They are very active, which is nice, but they seem to have no idea what is going on around them. One will swim to the top, and one to the bottom. Then they just swim into each other. The third one is off doing his own thing, but these two just can’t seem to not swim into each other. They make me laugh. I need to come up with some good trio name for them.

So far I thought of the three musketeers, but those are names I have used before.

Also I was thinking Terra, Gale and Blaze…and they live in water…see how funny I am.

I don’t know…Still working on it.

We had a pretty good vacation over all. I got to see my father, my sister, and her three kids, my favorite aunt, and my Grandmother. I also got to see my boyfriend’s mom, and three siblings, as well as, his nephew.

We also got to visit with his boyhood friend and his new wife. They were a lot of fun to meet for the first time. His friend was showing my boyfriend’s son how to do a magic trick with a dollar, only he left out the “magic” part. So my step-son is sitting at the table with a dollar bill folded up in his hand trying to make it disappear. He threw it all over the place. It was hilarious.

I also got to bring home my favorite piece of my grandmother’s stained glass work. I’ve been avoiding taking it because it reminds me she is old, and also because I was scared it would get broken. It is a beautiful poppy table lamp. Just seeing it makes me smile. I feel special to be able to have it in my home. I will cherish it always!

Untitled

I look on their lives alight
So bright
Alright
My being becomes enraged
Deranged
Un-caged

Untitled

I want to spit on their peace
Kick dirt in their quiet
I want rage in the darkness
In sighting a riot

Last night when I was feeling bad I decided to go for a walk to the park. I like going to the park and playing on the swings. Somehow swinging makes me feel better. After a good swinging, I decided to write some of the things I was feeling out in poetry.

So there I am sitting in the dark writing poetry in the park on a swing in the middle of the night. I felt like one of those stupid girls in a horror movie. I heard some creepy noise in the dark and all I could think was “bring it on darkness! I’m not in a mood to be fucked with right now.”

When I was walking home I had the realization that I had walked to the park crying, and written poetry in the dark. I suddenly feel emo. I should do a wardrobe change. :)

I can’t believe it’s been a year since I started my job. Time is flying by so quickly. I feel like I should be cherishing every moment, but there isn’t a lot going on in my life right now other than work. Thinking about how fast time is flying by, got me thinking about how much time I have left.

Today isn’t a strong day. I picture myself in a body that I can’t control, and I’m terrified. Thinking about it makes me want to cry. My wrist started twitching today while I was watching a movie with my family, and I almost jumped off the couch screaming. I know that it has nothing to do with my Huntington’s, but the movement made my skin crawl.

I want so badly to be strong all the time. I don’t want my family to see me weak.

I told my boyfriend about my twitch and he helped to ease my mind. It really only helps on the surface. Underneath it all I’m still clawing at the walls of my mind. The idea of being trapped in my own body seems like something from a nightmare.

I’m finally going on vacation! It has been almost a year since my last vacation! In fact, almost a year to the day. Weird…

Anyway, I am heading back home to visit my Grandmother (who I adore so very much), my favorite Aunt, my dad, my sister, and my nieces and nephew! Also going to see my boyfriend’s mom, and siblings! I’m so excited to not be at work!

I’m so excited that I’m excited about packing! That is a lot of excited! I can’t wait to see everyone! I have missed you all too much!

I almost ran out of gas today! I have never done that, but I was worried I was going to be that idiot on the side of the road!

I left work and realized my gas light was on. So I decided I’d drive to the Safeway near where I was going anyway to get gas. It is on the other side of town, but I figured I’d be okay.

Then I had to stop at every light, and on a steep hill in construction! I finally got to the station, and I realized I’d left my purse at home this morning! So I had to drive clear back across town. The problem was, I wasn’t sure if I’d left my purse at home, or at work. If I went to work first it was further than home, and it might not be there. :(

I finally decided to drive home first. It was most likely there, and if I did run out of gas on the way, hopefully it would be in my own neighborhood.

I got to the house and found my purse. I decided to risk it and drove to the closest station for gas. I made it, but my car was not happy!

I stayed home from work today cause I wasn’t feeling good at all. I went yesterday, but I felt worse this morning than I did yesterday. After calling in at 4:45am, I went back to sleep. I ended up sleeping till just after noon. In the end I slept for fourteen hours. I am feeling a bit better, but my legs hurt from laying around too long.

Planning on watching movies till I feel better…and cleaning some house before the boys come home tomorrow.

My dog just tattled on my cat. I had put the dog in the yard to go potty, and had left the door cracked open. At some point the dog used her nose to push the door open wider, and had come inside. I wasn’t aware that the door was now wide open, or that the dog was in the house.

Out of nowhere the dog starts barking like crazy, from right behind me. I about peed…she scared me so bad! I turned to see what the dog was barking at, and noticed the cat had slipped onto the back porch. The cats are inside cats, and don’t get to go outside. Apparently the dog is aware the cats are not allowed outside, because she totally ratted the cat out. No wonder they don’t always get along!

Over a year ago I signed up to receive information about any Huntington’s trials that might be going on. I just got an email for a trial that is looking for participants. I don’t fit the criteria, nor am I close enough to any of the nine locations, but I thought I should share the information here!

HDtrials.org

Reach2HD  is a Phase 2 study to determine the safety, tolerability and efficacy of PBT2 in patients with early to mid-stage Huntington’s disease currently recruiting participants.

Research has shown that normally occurring metals in the brain play a significant role in diseases such as HD. PBT2 has been demonstrated to interrupt interactions between biological metals   and target proteins in the brain to prevent the deterioration of brain cells in animal models and Alzheimer’s patients, therefore it may improve cognition.

Locations: Nine (currently)) Research Centers in the United States. (See list and contact information below).

Participants: A total of 100 participants are needed.

     •   Age: 25 or older

     •   Early to mid-HD, with a genetic test CAG repeat equal or greater than 36, motor symptoms of HD and a Total Functional Capacity Subscale Score (TFC) between 6 and 13

     •   Have a cognitive impairment as demonstrated by a MoCa score of equal or greater than 12

     •   Each participant must have a study partner who is willing to provide consent and spends on average at least 2 hours a day for at least four days a week with the patient and agrees to attend certain visits and provide accurate information about the patient.

     •   Participants must be able to swallow oral capsules, and if they are taking tetrabenazine, must have been on a stable dose for at least 3 months.

     •   Participants may not have an allergy to PBT2 or other primary neurodegenerative disorders association with dementia, or any other condition that may impair cognition.  They may not have chronic heart, kidney, blood, liver conditions, or have been diagnosed with a malignancy within 2 years of screening. Pregnant or lactating females may not participate as well.

Trial Duration: 34 weeks and a total of 8 participant visits including a final follow-up visit. At these visits there will be blood drawn and other tests performed, and at three there will be an eye exam. Study partners will be required to attend 3 visits with the participant.

There are travel reimbursements available for participants. Please speak to the site coordinator about details.

For more details please call one of the participating sites and please tell the coordinator that you learned about the study through HDTrials.org. For more information regarding this study please visit:  http://www.clinicaltrials.gov/ct2/show/NCT01590888? term=Reach2hd&rank=1

Locations (as of this date – we will notify you of new sites going online or you can check at:

http://www.huntington-study-group.org/HSGResearch/ClinicalTrialsObservationalStudiesinProgress/Reach2HD/tabid/243/Default.aspx

United States, California

University of California San Diego

San Diego, California, United States, 92161

Jody Goldstein:   858-246-1254

United States, Colorado

Colorado Neurological Institute

Englewood, Colorado, United States, 80113

Diane Erickson:  303-762-6674

United States, Maryland

Johns Hopkins University

Baltimore, Maryland, United States

Nadine Yoritomo 410-614-9254

University of Maryland School of Medicine

Baltimore, Maryland, United States, 21201

Samantha Gibson:  410-328-4349

United States, Minnesota

Struthers Parkinson’s Center

Golden Valley, Minnesota, United States, 55427

Patricia Edo:  952-993-5495

United States, Missouri

Washington University

St. Louis, Missouri, United States, 63110

Patricia Deppen:  314-362-8548

United States, New York

Albany Medical College

Albany, New York, United States, 12208

Mary Eglow:  518-262-6611

Columbia University Medical Center

New York City, New York, United States, 10032

Ronda Couse:  212-305-2387

United States, Tennessee

University of Tennessee Health Science Center

Memphis, Tennessee, United States, 38163

Kate Marshall: 901-448-6180

My first night alone without the boys was cold. I forget how much of a furnace my boyfriend is. Had to get up at 2am and shut off all the fans, double over the blanket, and snuggle up with our fat cat!

Started my home alone days with a nice three mile walk. Feeling good.

It is official. The boys have left until Thursday! Going to do something now…like finish cleaning house. Boy! I am lame!

  I’ve been thinking about when it is best that we tell my boyfriend’s son about my Huntington’s. My boyfriend and I have been together for almost three years now, and we have known my positive test results for almost a year. His son is eight.

  I feel like us not telling him right now is keeping things from him, but at the same time I am not sure that he is old enough to deal with it right now. My boyfriend feels that he is definitely not old enough now. He worries that since he is so young that he may be upset and not have the tools he needs to deal with the information. I can understand that.

   I also know that I would hate for him to find out the way I did. My mom came back into my life already symptomatic. She left healthy, and came back with chorea. It was hard to take all at once. I didn’t have time to know her as not ill. She was not the same person she was when she had left years ago. It was difficult.

   My boyfriend feels that ten is a good age to tell him. However, if I start to show signs before then, then we will tell him earlier. I think this is probably wise, but I know it is going to be difficult to feel like I am keeping things from him for the next two years. As of right now the only thing we keep from him are things like sex. Eight is too young to know about sex. We tell him he is not ready to know yet, and that we will tell him when he is older.

  I wonder if that is a better approach to my HD. If he overhears something just tell him he isn’t ready yet. However, the problem with that is he may be angry with us if he knows something is wrong, and we won’t tell him. The same could happen if we wait to long to tell him. I fear he will get mad because we kept it from him so long.

  Why does this have to be complicated?

My boyfriend, his son, the dog and I went on a walk earlier today. While we were walking along a busy city street, a mouse ran out of the shrubs and sat on the sidewalk not far from us. We thought he was cute, and expected him to run from us. Instead, as we approached, he sat still and didn’t run. I walked all the way up to him, and reached down. I ran my finger down his back, and then he finally decided I was scary. He ran, almost up my leg. When I moved he then ran at my boyfriend’s son. He jumped out of the way, and the mouse fled into the grass. He stopped there until my dog tried to eat him, and then he finally ran away from us. Even after all of that he stopped a few feet behind us to watch us go.

What a weird mouse. Thought I should share.

My boyfriend and his son are going to be out of town for about a week. I am going to be completely alone in the house for the first time in a long time. So I decided I’m going to make a home alone list to get accomplished while the family is away! This is what I have so far:

1. Watch any and all musicals I own (Boyfriend doesn’t like most of them)
2. Walk around naked
3. Pee with the bathroom door open
4. Take a shower and not worry about who has to pee or who might see me
5. Sleep where ever and whenever I want to
6. Eat whatever makes ME happy

This is going to be good. If they have to go away, I might as well enjoy the alone time while I can!

Working over time at work is killing me. All I want is to sleep. Working nine hour days is bad enough, but they made us come in for a ten hour shift on Thursday. That means I had to get out of bed at 3:45 am. Ridiculous!

I get a week off soon. It is going to be heaven!