remembering.

She's having a hard time doing that lately I guess. The progression is getting quicker and I'm trying to keep a good head about all this and not let it affect my emotions but this is getting so hard to think about.

I just got off the phone with our mom, it's her birthday! (63 awesome years.) I asked how Em was doing lately with things, and she told me about how there is post-its everywhere in her place.. she's labeling where the plates are, cups, what cabinet the food is stored in, everything... what's in the bathroom cabinets, where her kids things are.. she just can't remember on a daily basis anymore. My mom said she even has her phone number, address, and birthdays etc written down on the wall, which really is a good thing especially for the kids to have access to in case of an emergency.

I called up Emily after talking to Mom, she did her usual venting about guys inbetween cigarette breaths.. breakfast of champions? ick. Anywho, her and I don't really get emotional about things, we try to keep subjects like her disease on a casual level.

After talking to my momma I researched online about memory loss associated with Huntingtons and found out that they are testing a new drug, something that will of course also help with other memory-loss associated diseases. I'm really crossing my fingers that this will be something that becomes availible that she could have access to within the next couple of years.. check out the link

http://www.biotechdaily.com/?option=com_article&Itemid=294722640&cat=Therapeutics&ui=80068600&vrf=91224ea46e54cc4dfccd92c004ef84a4&end=%20

I made sure to have Em write down the names of the things being tested so that she can inquire with her Doc. She hasn't had major twitching yet but there was a drug just approved to help with the spasms, and if this other new one gets going soon, it will really help some of the main problems that arise with the development of what she has.

I don't know, it's all kind of taking a toll lately. To hear that my 28 year old sister needs to write on a piece of paper "Cups" and tape it to a cabinet was really just hard to hear.

On a happier note- next week is Rage's birthday. Emily really wants me to be a part of it, the feeling is totally mutual, so next saturday on his big day the whole troop of them are coming up to madison, I work until 4 but they are going to come and pick me up afterwards, and Em wants to make it a suprise that I'll be joining, so that's kinda cute. We're going to live it up at the zoo and Chuck E. Cheese :o) I can't wait..

Now for an ironic/funny part of the phone conversation... I was telling emily that I keep a notebook to write shit down in so that I don't forget, that she should too, and how she has a better excuse to forget crap than I do, then she said that she actually has a notebook too to help her remember things... but she doesnt know where she put it. (har har).

Getting to the middle.

This site offered a (very brief and not detailed) summary of the the main progression phases of Huntingtons Disease. http://www.hdsa.org/living-with-huntingtons/family-care/stages-of-hd.html

Here are the main points..

Stages of HD

Although symptoms of HD vary from person to person, even within the same family, the progression of the disease can be roughly divided into three stages.

Early Stage HD usually includes subtle changes in coordination, perhaps some involuntary movements (chorea), difficulty thinking through problems and often, a depressed or irritable mood. Medications are often effective in treating depression or other emotional problems. The effects of the disease may make the person less able to work at their customary level and less functional in their regular activities at home.

In the Middle Stage, the movement disorder may become more of a problem. Medication for chorea may be considered to provide relief from involuntary movement. Occupational and physical therapists may be needed to help maintain control of voluntary movements and to deal with changes in thinking and reasoning abilities. Diminished speech and difficulty swallowing may require help from a speech language pathologist. Ordinary activities will become harder to do.

In the Late Stage, the person with HD is totally dependent on others for their care. Choking becomes a major concern. Chorea may be severe or it may cease. At this stage, the person with HD can no longer walk and will be unable to speak. However, he or she is generally still able to comprehend language and retains an awareness of family and friends. When a person with HD dies, it is typically from complications of the disease, such as choking or infection and not from the disease itself.

Let's see them pearly whites..

Emily's are far from. My parents and I have noticed lately that it seems like her teeth are literally rotting away. Sure she did drugs in the past, and they didn't look like THIS.. I haven't said anything to her about it since I'm sure it's not something people would want pointed out. "Hey, your teeth look like shit!"... Yeah, I think it's not a compliment. I did some looking up online to see if this could be a part of the progression and I found a ton of sites and a lot of information. People with the disease have a hard time brushing and flossing, and tooth decay is present in all cases. She doesn't have dental insurance and I doubt she will get it. I'm sure she tries to take care of them, she's not a dirty lazy person who doesn't care about her personal things. She's a mom of three kids for goodness' sake, she's gotta take care of herself and the three little ones all on her own.

I really hate watching this all progress with her, it seems like more and more things are happening, new things. It's really starting to scare me to realize I'm going to lose my sister, and the kids wont have thier mom.

I'm glad I moved back.

Happy Juice

When I visited in March of this year, Emily could drink. Now? I have been calling her a light-weight but I think her partying days should end soon. Things have been happening and her disease is progressing. A few months ago she called me up, in tears, shaken, over a night of drinking. As Huntingtons disease progresses, your body just can't take or deal with the alcohol or any kind of drug in your system well, and it will affect you in ways it might not have before. I read this in a book I found at the library the other day. Anyways, she had gotten drunk at a bar (when really it was only a couple drinks, which is typically fine for her) and apparantly she had taken a swing at a good friend, didn't remember it, fell off of a barstool------- which is relatively really funny and it still is, but all of it is part of how its affecting her different.... i'd still pay to see it happen though :) and then someone had to walk her home... and it turns out this guy and her did the dirty deed a few times. Emily woke up and didn't remember shit, freaked out, could barely move all of the next day when her kids were there, and she went as far as going to the hospital and telling them she was raped.... This blog entry is a little bit more graphic and personal than most, but I'm really scared for her and how things are affecting her now. There were other people there at her house and they all know that this guy only walked her home, yes things happenned but she was at the time willing and whatever else, i dont know, it's weird describing that about my sister. When she was up here at Taste of Madison a couple weeks ago she could barely walk after a couple beers, it's just not good. Starting to get worried more lately..........

Overdue

Having no internet in my new little place makes it hard to do the things on the internet I'd like to do, so here I sit at a little cafe on a swanky street AKA State Street in downtown Madison, my new home.

From the time our grandparents both passed away, things have been commonly known as haywire in my family with arrangements, new schedules, and just overall getting used to the big changes. One sister is taking care of a new baby, another is looking for a new house- her husband was laid off, Emily is dealing with the obvoius, and I'm trying to start all over with a job, no car, a teeny studio, and my parents are im sure trying to get used to not scheduling thier days around taking care of the two most important people in my dads life aside from my mom.

Saturday night I met Emily after work for something called Taste of Madison, it's an annual festival showing off all the beer and best food of the city, as well as good music! We met up to watch Cold and Taproot, she was drunk after like 3 beers.... fricken lightweight.

Em got a job in town at a place where she used to work, I helped convince her to get it, and I'm really happy that she decided to. She will still get assistance for household bills and food, but this will help so much more. Her kids started school and it goes around her working hours perfectly.

Looks like things are looking up
:)