Yesterday's visit to Memphis

Yesterday was my first visit to see a neurologist at UT Memphis to participate in a new drug study. The purpose of yesterday's visit was to evaluate my cognitive and physical abilities and determine where I am in the progression of the disease. This evaluation helps them decide which trials I qualify for. These tests are the same tests I am used to doing every time I participate in any study. The fun part was that they were using spouses as non HD participants so they made Chip go through the same tests - and he got to see why I always feel so dumb! =) After the tests, the doctor decided that I definitely qualified for the 2CARE study. Don't ask me what is stands for because I can't remember right now. This is the Coenzyme Q10 study that I was hoping for. Most studies have been done at 600mg of CoQ10 and shown some "favorable trends toward slowing disease progression" but this study is doing a dose of CoQ10 at 2600mg. The frustrating part is that I have to go back next Wednesday to have my blood taken to be sure that liver and kidneys can handle the high doses of the drug.
I wanted them to do that yesterday but they were already taking blood for that study and they didn't want to draw that much in one day. =( So after next week, I will go back the following week, on the 11th and get the drug. Yesterday was a long day. With traffic, it took us 4 hours to get there. =( Of course, if you know me, I slept the almost the whole way there. We laughed about the fact that even if it might be for a yucky reason, it was pretty nice having a day to ourselves. Over all it was not a bad day. Tonight I am thankful for my husband... my friend.

I'm so proud of my babies!

I just wanted to brag on my babies a little. Both Shelby and Cole were baptized tonight at church. They both asked Jesus into their hearts several years ago but weren't ready for baptism. Shelby has been putting it off because she is nervous about doing it in front of a crowd but Cole decided he wasn't waiting on her anymore. But they both decided to do it tonight along with about 14 other kids. I was so proud of them. I pray that when times get tough, they will be able to look back on their decisions and their baptism and remember.

Thursday night, Cole was in a President's Program and he was John Adams. He was so cute in those big black pants and jacket (thanks to Marla!). And he wanted his hair white so we spray painted it. Each president had to escort his first lady to the podium and they took turns with their speaking parts. Cole almost drug his first lady back to the chairs. It was so funny! Tonight I am thankful for our children. They really do make me proud!

UT at Memphis

I have my appointment at the University of Tennesse at Memphis on February 25th. I will actually be enrolling in 2 different studies. The first one is called COHORT which is basically another observational study that involves the whole family. Chip and I will go and answer a million questions and from those answers, they will decide which drug trial is best for me. Most likely it will still be the Coenzyme Q-10 but there are 2 other trials that are now available - one is creatine and I'm not sure what the other is. All of these trials will involve several visits at first to Memphis for bloodwork. So I may be looking for friends to ride with me to Memphis when Chip doesn't have to go with me! This is all I know for now. I will tell you all more when I get back!
I just want you all to keep something in the back of your mind for me over the next couple of months. My younger sister is going to be tested for HD in April and I am having a hard time with it so please keep our whole family in your prayers when you think about it. I will also talk about this more later.
Today is my baby's 9th birthday. Cole is so much fun and has such a sweet heart. Today I am so thankful that he is a part of this family! (I do wish I could freeze time and make him stop growing while he still loves his mommy so much!)