For all of you wondering how my younger sister's test results came out...she DOES NOT have the disease!!! Isn't that wonderful!? I am so happy for her. She has so much ahead of her now without this looming over her. As my sister, she is so close to my heart. Every time I even thought about the possibility of her having it, it was worse that me going through it again. I love her so much and am so glad that she is not going to have to face this part of the battle. Granted, HD is a family disease, so she can't ignore it. In fact it's a little funny that she is the least patient among the three of us, and now she'll end up having to help take care of us!!!! =) I really do want to thank all of you for checking on me and for all of your prayers. You all are the best.
Today I am just thankful...
Saturday, May 9, 2009
Friday, April 17, 2009
Updates...
Sorry it has been a while but life has been busy... I hope everyone had a Happy Easter. Ours was very nice! The kid's spring break was wonderful. We didn't go anywhere but we had nice weather the first week so we went to a couple of parks for hiking and biking. And Chip went with us to the zoo. It really does make me wish we never had to get up early and never had homework - it really does make me a nicer mom. =) I'm sure it would eventually get old. Ha!!
I went back to Memphis last week to get more drugs. The drug I'm (hopefully) taking is to help cognitive functioning and the dr. said that some patients who have been on it longer are beginning to see a difference. Now I know those people could be on a placebo and it could be "in their head" but it would be nice to think it is working. I also found out something else that is a bit encouraging. If you have been reading this from the beginning, you know that one of our problems has been finding a good neurologist in the Nashville area. Any movement disorder neurologist will treat you, but most of them deal with primarily Parkinsons patients. Last year I even went to Indianapolis because I liked the one there so much and because she had so much experience with HD. I talked to the neurologist at Memphis who is doing the study and asked him if his other patients saw other neurologists. He told me there would me no need for me to have anything other than my primary care dr and my obgyn. That he would take care of everything else for me. Of course I will be seeing him at least every 6 months so he will know me better that any other dr. would. I was excited about this - you have no idea how frustrating it is going to drs. who don't have a clue what HD is. And even better -- it is free because it is part of the study!!
My younger sister did go to have her genetic test done yesterday and now we wait. She will get her results in 3 weeks. I don't need to tell any of you how much our family could use a miracle so keep praying for one!
I want to end this on a funny note...this is what all of you parents of boys have to look forward to...So I get a call last Thursday, while I am at preschool, from the school that I need to come get Cole. Evidently he had been playing with a rolled up piece up paper and seeing how far he could get it to go in his ear. When it got so far that is wouldn't come out anymore, he decided to use a pencil to try and get it out. Which obviously pushed it much further down...so far down that you could no longer see it. The nurse said it was close to his ear drum and she didn't have an instrument skinny and long enough to get it out. So I was going to have to take him to the dr. to get out the paper. When they called me, Cole was crying, he was convinced they were going to have to cut him or put him to sleep to get it out. It was a little funny. An hour and a half later - after trying to scrape it out and flush it out and scrape it out again - it was out. Since then I have been told to be thankful it was only paper. I have heard horrible stories of peas and beans and candy in noses and ears and it's always little boys. That makes me laugh! What would we do without our boys to make us laugh?
Today I am thankful for my sisters...
I went back to Memphis last week to get more drugs. The drug I'm (hopefully) taking is to help cognitive functioning and the dr. said that some patients who have been on it longer are beginning to see a difference. Now I know those people could be on a placebo and it could be "in their head" but it would be nice to think it is working. I also found out something else that is a bit encouraging. If you have been reading this from the beginning, you know that one of our problems has been finding a good neurologist in the Nashville area. Any movement disorder neurologist will treat you, but most of them deal with primarily Parkinsons patients. Last year I even went to Indianapolis because I liked the one there so much and because she had so much experience with HD. I talked to the neurologist at Memphis who is doing the study and asked him if his other patients saw other neurologists. He told me there would me no need for me to have anything other than my primary care dr and my obgyn. That he would take care of everything else for me. Of course I will be seeing him at least every 6 months so he will know me better that any other dr. would. I was excited about this - you have no idea how frustrating it is going to drs. who don't have a clue what HD is. And even better -- it is free because it is part of the study!!
My younger sister did go to have her genetic test done yesterday and now we wait. She will get her results in 3 weeks. I don't need to tell any of you how much our family could use a miracle so keep praying for one!
I want to end this on a funny note...this is what all of you parents of boys have to look forward to...So I get a call last Thursday, while I am at preschool, from the school that I need to come get Cole. Evidently he had been playing with a rolled up piece up paper and seeing how far he could get it to go in his ear. When it got so far that is wouldn't come out anymore, he decided to use a pencil to try and get it out. Which obviously pushed it much further down...so far down that you could no longer see it. The nurse said it was close to his ear drum and she didn't have an instrument skinny and long enough to get it out. So I was going to have to take him to the dr. to get out the paper. When they called me, Cole was crying, he was convinced they were going to have to cut him or put him to sleep to get it out. It was a little funny. An hour and a half later - after trying to scrape it out and flush it out and scrape it out again - it was out. Since then I have been told to be thankful it was only paper. I have heard horrible stories of peas and beans and candy in noses and ears and it's always little boys. That makes me laugh! What would we do without our boys to make us laugh?
Today I am thankful for my sisters...
Friday, March 13, 2009
I finally got my drugs!
I had great intentions of telling you all about my trip to Memphis last week but almost as soon as I got home, I got sick - with the flu! I have not had the flu as an adult and let me just say that it has been a miserable week. I was well enough by Wednesday, however, to go back to Memphis to finally begin the process with the study medication. They are chalky tablets that taste like maple and I will have to chew 4 in the morning and 4 at night with my meals. I am hoping I will soon get used to the texture/taste of them since they will be a part of my diet for the next 5 years. Obviously, I have no idea whether or not I am taking the real medication or a placebo. I won't go back to Memphis for a whole month! :)
Again, I want to ask you to keep our family in your prayers. I told you that my younger sister is being tested next month and I am having a difficult time with that. When I was the first one to go through testing and I was positive, I was okay with that. I felt like if I could just be the only one in the family with it, then that would be okay. And then when my older sister tested positive, I was angry. And it has taken me this long (6 years) to get a little peace with God about it. And now, if my little sister gets it, I am not sure I can explain how pissed and heartbroken I am going to be. It doesn't seem possible that God would allow all 3 of us to get this disease. My mom couldn't handle it if that happened. Obviously, this will be huge for all of us to deal with, so we can use all your prayers.
I have missed keeping up with you all on facebook lately. I gave it up for lent so I have only been on there on Sundays for the past few weeks. I hope everybody is doing well.
Today I am thankful for my sisters.
Again, I want to ask you to keep our family in your prayers. I told you that my younger sister is being tested next month and I am having a difficult time with that. When I was the first one to go through testing and I was positive, I was okay with that. I felt like if I could just be the only one in the family with it, then that would be okay. And then when my older sister tested positive, I was angry. And it has taken me this long (6 years) to get a little peace with God about it. And now, if my little sister gets it, I am not sure I can explain how pissed and heartbroken I am going to be. It doesn't seem possible that God would allow all 3 of us to get this disease. My mom couldn't handle it if that happened. Obviously, this will be huge for all of us to deal with, so we can use all your prayers.
I have missed keeping up with you all on facebook lately. I gave it up for lent so I have only been on there on Sundays for the past few weeks. I hope everybody is doing well.
Today I am thankful for my sisters.
Wednesday, March 11, 2009
Thursday, February 26, 2009
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 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.
Sunday, February 22, 2009
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!
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!
Sunday, February 15, 2009
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!)
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!)
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