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).