Party Pooped

After a day like today, I am not going to try and think of anything deep to say. My brain and my body are too tired! Our whole day at Mother's Day Out consisted of Halloween Fun and by the end of the day, my 3 year old's were bouncing off the walls! My best laugh of the day came when Tinkerbell asked me if she could take her tights off and she took off everything when she did. I got mooned by Tinkerbell!!! :-O
It seems that because I chickened out last weekend at Homecoming, some of you think I might do the same next weekend for the 25th celebration. Some of you are even trying to get me liquored up ahead of time so I won't miss it!! :-) And that's not a bad idea! I am really looking forward to next weekend. I know that I will be nervous but since I'm going with you guys, I think I will be okay. Now I just have to find a dress and then I'll be more excited!
Tomorrow is Halloween and we have several friends coming over for pizza and trick or treating. I should be cleaning my house but I'm not. I'm going to watch Grey's and ER and go to bed. The dirt will be there tomorrow!
Tonight I am thankful that I don't have to work tomorrow and that I have good friends coming over tomorrow night.

Tetrabenazine

Laura called me today about an article she had read in the Life section of the USA Today. The article is about a new drug for Huntington's Disease. Since I have had other people ask me about it, I thought I would tell you all about it. Tetrabenazine is not a new drug. It has been prescribed by doctors and bought in other countries for several years. It has taken several years to get approved in the US because of the side affects. Tetrabenazine also does not treat the disease, it treats one symptom of the disease - chorea. Chorea is the uncontrollable movements that can become debilitating for some people. Laura asked me if I was taking this medicine and I am not. It is not recommended that you treat chorea unless it is causing problems and my movements are not that significant. Unless you count rubbing holes in the sheets from constant leg movements while I'm trying to get to sleep! This is very exciting for the HD community because it is the first drug ever labeled specifically for Huntington's Disease. It was very confusing, however, for some of the HD patients because when they heard there was a drug for HD, they thought it meant there was a cure. If you get a chance, look up the article, there is some interesting information about how hard it has been to find drug companies to even want to work with HD because there is little money in it. When I went to USAToday.com, I couldn't find it in the Life Section so I searched under tetrabenazine. I want to thank all of you for caring! Thanks for asking Laura!

Cole

I have been sitting here doing homework with Cole which is a real challenge. He is very smart but you have to make him write down his answers and then coax him to move on to the next problem. He can tell me all the answers, he just doesn't want to take the time to write them down. One worksheet that should take 10 minutes ends up taking 30 to 40 - and that is only if you are sitting right beside him. If you leave him alone, it might never get done! I should not complain because with Cole, we have come so far. There was a time when I was told by his kindergarten teacher that he would never do well in school because of his behavior. Cole ended up being diagnosed with ADHD and after we figured out how we could help him, he has been in the top of his class for the past 3 years.

Most people don't realize that there is also a Juvenile form of HD. It is not as common but it does happen. I have read several heart breaking stories about people who are taking care of a spouse with HD and one or more children with it also. The sad thing about juvenile HD is that it progresses much quicker. I have also read stories from HD patients watching their own children die with the disease. I cannot imagine the horror or the guilt! Obviously I worry about this with my own children, especially when Shelby falls all the time - she obviously inherited my grace that I had long before HD! I also worry about Cole because often times ADHD is misdiagnosed in kids with juvenile HD. I do not let myself think about it often because it would drive me crazy. I know that they are both healthy and fine and I am very thankful for that. My heart does break for those parents who can't say that.

Cole has always had the sweetest heart and he loves people without condition - especially his mommy! But when it comes to following directions or listening, he is a challenge. I am thankful that we have some control over it now and pray that it continues. For now, I try to enjoy every day with him. He is such a sweet boy and he's so much fun. And he still likes for me to be around which I know won't last, but I'm going to enjoy it while I can!

Tonight I am thankful for my little boy who has his mama's heart wrapped around his fingers.

I'm a loser!

Okay, I'll admit it. I suck. I couldn't even get my nerve up enough to go to the Block Party Friday night. I slept several hours on Friday trying to "prepare" my self for that night and then I started packing our things to take to Chip's parents' house. My nerves were quite stressed when I had to stop to take Shelby to swim team practice. By the time I got back at 5:30, we needed to be leaving and I was a wreck! I really didn't want to go and I still didn't have everything together. So I got the kid's things together and sent them to Clarksville with Chip. We had to take them to see his parents even if we weren't doing the block party - we had already promised his parents and the kids. So I laid down, because that's what I do when I'm stressed, and I slept until 10:30pm when Chip called and woke me up. I got up and ate something, locked up and went back to bed until almost 9 the next morning. That is how I avoid dealing with things that stress me. I am in my happy place when I am sleeping. :) So Chip tells me that Norm and Robyn didn't go to the Block Party either because they had a sick child but they would meet us for lunch. And his friend Todd that he was excited about seeing, was no longer coming. So I tell Chip to tell them that we'd meet them for lunch and we would still go to the parade after. While I am driving to Clarksville I am telling myself not be nervous. It's just Norm and Robyn and their kids - what's there to be nervous about!? It actually went better than I thought it would. It was great seeing them again. We convinced them to come to the parade with us and I'm glad we did because it helped me not be quite so nervous. Of course there wasn't anything to worry about - I didn't know anyone there! The kids enjoyed walking around the campus. Cole even wanted an Austin Peay hat and Shelby got a shirt. Cheesy huh!? Well, I am disappointed in myself this weekend. I let my nerves get the best of me.

It's all in my head

Let me just say that a really good way to make someone who already feels a bit crazy, really crazy, is to tell them it is all in their head. Believe it or not this is what my mom told me last night when I was talking to her about how anxious I was feeling about this weekend. I was telling her how it frustrated me that these things used to never bother me and she asked me if I was letting my sister's progress affect me. She wondered if I was looking at my sister and thinking that the same things should be happening to me. In other words, was it all in my head!!!?? I was pissed!! First of all, the things that bother me are not the same as what bothers my sister. And second of all, I do not make a habit of trying to be like big sister. If you know me and her, you know that is quite the opposite! So when I am mad and upset I always start crying. And I tell her that isn't fair. That the things happening to me have nothing to do with my sister. I should be able to talk to her about the very real things I am experiencing without being made to feel more crazy. Then she breaks down crying and says that she is in denial about me having any symptoms because I am not supposed to have HD. That I am the one who "holds our family together" and she doesn't know how she'd make it without me. So we have a cry and she tells me how guilty she feels that any of us are going through this. She says she's sorry for trying to find other reasons for my symptoms. I tell her that I've got to be able to talk to her without her making me feel like "it's all in my head." I went to bed with a bad headache because when I cry, I get a headache. And a lingering feeling that I am a bit crazier. :-)
Tonight I am thankful for my mom. I really don't know what I would do without her.

Welcome back stress

I wish I could say I missed it but I haven't. The past 2 weeks have been nice but now it is back to the old routine. I got the kids off to school with a few tears, a belly ache and 2 fights which was a slow morning! Of course thinking about having to go back to work tomorrow stresses me a little but what is really putting a lump in my stomach this morning is Austin Peay's Homecoming looming at the end of this week. Todd has called Chip and told him he will be there and so will Norm. I get to see my friends all the time but Chip doesn't so I am trying to be okay with going. I'm actually a nervous wreck. Chip has said we don't have to go but that's not fair to him. I know I have complained about this to some of you before but now that it's here, I am dreading it even more. The crowds make me nervous, especially crowds of people that I might or might not know. It's just not fun going back and seeing people when you're fatter, twitchier, and you can't remember who anyone is! Well, I'll stop whining for now and be thankful that I am here for another Homecoming!

I Never Lost my Praise

I wanted to share a beautiful song that was sang at church today. It is called I Never Lost my Praise and here are the lyrics.

I've lost some good friends along lifes way
Some loved ones in heaven departed to stay
But thank God I haven't lost everything
I've lost faith in people who said they cared
In time of my crisis they were never there
But in my disappointment, in my season of pain
One thing never wavered, one thing never changed
I never lost my hope
I never lost my joy
I never lost my faith
But most of all, I never lost my praise
My praise still here. My praise still here.
I've let some blessings slip away
When I lost my focus and went astray
But thank God I haven't lost everything
I lost possessions that were so dear
I lost some battles walking in fear
But in the midst of my struggles, in my season of pain
One thing never wavered, one thing never changed
I never lost my hope
I never lost my joy
I never lost my faith
But most of all, I never lost my praise.
My praise still here. My praise still here.

Those are powerful words aren't they? This song is a challenge to me. I want to be the person that can look back and say I never lost my hope, joy, faith and praise. I can tell you that there are certainly days when I don't feel so joyful! It is hard- even impossibe without God's help but he has promised us that he will always be there to help us. And because of his promises, I have hope. Hope that someone will someday say about me "She never lost her praise."

I don't want to go back!

This is the last day of fall break and I wish I could make time stop. During the 2 weeks that the kids have had off, I have also had off of work. I work at the Mother's Day Out at our church on Tuesdays and Thursdays. This is my 5th year teaching 3 year olds in a mother's day out. I don't do it for the money - trust me - I make a whopping $40 a day. I do it because I have always enjoyed it. I enjoy the kids and the friends I work with from church. It gets me out of the house and keeps my mind busy. This year, however, has been a nightmare for me and I can't decide exactly why. I have started having panic attacks while I'm getting ready for work, on my way to work, or even while I'm at work - and this is something I have never done. I have found myself dreading going to work. I don't enjoy it. When I come home from work, I literally cannot move or do anything else until I have layed down for a while. Most of the time "a while" turns into 3 hours of being almost unconscious. On the days I work, I am so much less patient with my kids at home. I find myself snapping at everybody. These are all things I have never done before. I do have a little boy in my class that requires a tremendous amount of time & attention. He is very difficult and it stresses me out because I feel like the other children are not getting a fair amount of attention. I don't know if the situation in the classroom is what is causing me to be so miserable or is my body trying to tell me something? I always knew there would be a time that I couldn't work anymore because of the stress. (The drs. say that the more stress on your body, the faster the disease will progress. ) I keep thinking the situation is going to get better but we are 9 weeks in and it hasn't so far. Obviously the stress is having an effect on my health but there is nothing I can do. The director is a great friend of mine and I will never leave her without a teacher. She knows that I need out but we both know replacements are very difficult to find. So for now, I know I have to have a more positive attitude. I am just not used to dreading something so much!

One of my many gripes

I'm afraid that blogging is making me dig out the good and the bad. It is therapeutic but on days like today, I just want to whine/gripe so I hope you'll forgive me. I was talking to my younger sister yesterday about this and I just can't get it off of my mind. You see, up until now, as far as the whole HD thing goes, I am the only one who has done anything. I am the only one who has done any research, found out what medicines/supplements we should be taking. Looked into what trials are going on or what is going on in the HD world. I took the initiative because it is my personality. Everyone in our family comes to me when they have questions about HD. That worries me as my mind is starting to get confused. The things I read no longer make sense like they used to. I have always taken pride in knowing about HD and what is going on but who is going to take over when I can't do that? It is a lot of work! It won't be my mom who is still in denial that me and my sister are progressing. My brother -in-law deals with my sisters symptoms as they come. It won't be him. My poor husband will have enough on his plate having to care for me. My sweet younger sister who wants to ignore it, I guess will have to step up! :) I'm just messing with you! It really makes you realize how much they all want to ignore it. And how much easier it would be if you weren't in the picture. That is why HD patients are 8 times more likely to commit suicide. Not because of themselves, but because they hate being a burden on their families.

Shelby

This past weekend Shelby reminded me that in 3 months she will be 11. Eleven! That can't be possible! I'm not sure which of my children I worry about the most but I worry about Shelby because she is so much like me. Eleven worries me because that is how old I was when I got my first boyfriend, and I constantly felt like I needed to have one until I met & married Chip. There were short spans without boyfriends but not often. I never felt "complete" without somebody. I look back and wonder how that happened because my sisters were basically the same way. Was it because of the abuse of my real dad? Or his death? I don't know but something happened that I don't want to happen to my Shelby. I went through my teenage years feeling like whether or not I had a guy defined who I was and I want her to know that is far from the truth. When I talk about college and what I would do different with my friends, I tell them that I would definitely worry less about the guys and have more fun with my friends. And that is what I pray that Shelby will do differently. I don't know how long I will be around to guide her with her choices so I pray that I am able to build her up while I can. I do know one thing I have done right is giving her Chip as her father. He is a great, caring, affectionate man. I don't think she will feel like she has to get her affection elsewhere. And I hope she looks for a man like him. If she does, she will not settle for guys who are players. Fortunately, Shelby still isn't showing any interest in boys. I know that it will change overnight. She is very open and honest with me right now which I also know that can quickly change. But I do hope that continues so that I can help her make better choices than I made. I don't want her to learn everything the hard way like I did!

It's good to be home

So we spent the day at the water park at our hotel. It was a perfect day. Even though the weather was not hot, the water was not cold so it was wonderful. I spent most of the day laying in the warm sun enjoying the breeze. And then when I got too tired from working so hard, I went to the room and had to go to sleep. That is one of the things that I get most frustrated with myself about. I hate that I don't have the energy to do all that I would love to do with the kids. I wish I didn't need a nap almost every day - I feel so guilty! So we decided to come home late tonight instead of early in the morning since Chip has a few hours of driving to do tomorrow for work. And guess what I did the whole way home? Yes, I slept!! And now it will take me forever to go to sleep so I thought I would download some of the pictures I took and write in my blog. I am thankful for our short trip together. The kids are growing up so fast, I am trying not to take one second for granted. They are a lot of fun at this age. We laugh a lot together - and they can fight a lot too! I hope that they love our life together right now as much as I do.

Pigeon Forge

Fall is my favorite time of year and it is even more beautiful here in the mountains. The colors are just now beginning to change and the smell is perfect. Today, there was not a cloud to be seen and the sky was a beautiful blue. The weather was in the upper 70's/low 80's - we spent the day at Dollywood and the weather was perfect for it. I always enjoy going to amusement parks with the kids because I enjoy doing the roller coasters with them. I always get to do the rides that drop and Chip has to do the rides that go round and round. Just watching them on the swings makes me sick :( The rides were great until they talked me into a wet ride and everybody got a "little" wet except me. I'm still freezing from being so wet! And I'm a little frustrated because my foot/heel/calf hurts really bad. Most of you know that I partially tore my achilles tendon in February when I was training for my 2nd half marathon. Even though I was in a boot for forever and I've been doing my physical therapy exercises, it is hurting. And walking "the hills of Tennessee" all over Dollywood today really messed it up even though I wore my correct shoes and my ankle brace. I'm just discouraged because I thought it would be better by now. Okay that's my whining for the day. Sorry! I feel better now!
I also don't want to forget to mention how much fun my sweet dears have been on this trip. Shelby has decided she does not want to sleep in the same bed with Cole so she is constantly complaining about it. He knows she doesn't want to sleep with him so he takes advantage of making it worse by constantly farting in the bed. Then she screams and kicks him and tells him how gross he is - which of course fuels his fire. We listened to this for over an hour last night. Tonight, Shelby is on the couch bed! We just had to have housekeeping to come and vacuum up a shattered coffee pot that Cole had filled up with water and then dropped on a tile floor. He was going to heat water in the microwave. What was he thinking? Even when they are a pain in the butt, they really are wonderful!! We are staying at a new resort that has its own water park and so tomorrow, we water park. They may have a hard time getting me out there if I don't thaw out over night! :)

Tonight I am thankful to be off of my foot!

My Tatoo

As I am procrasinating packing for Pigeon Forge, I was thinking about my last trip there. It has been several years since we have been with the kids but I was there with my girl friends in March of 2007. It was on that trip that I got my tatoo. Yes I was sober and yes it was planned. I had been wanting this particular tatoo since I was 18 and my mom wouldn't let me and I finally decided I would do it to remind me of my friends and to remind me that I'm not dead yet. It was me and Nicki, Laura, Cary and Meg. Poor Laura, we embarassed her to death, dragging her into a tatoo shop - but she did it for me. I wanted a tatoo of a violet, just like Cary's on my ankle, where I could always see it. I was excited but nervous so my body was jerking a little (thanks to HD) and the guy was afraid he was going to mess up. He finally found a good hold on my foot and was able to hold it still. My hands were still jerking a little, and Laura held them still while I got my tatoo. It still makes me smile when I see it. It reminds me of great friends. Friends that I truly believe would love me no matter what I told them. There is a group of about 10 of us that were sorority sisters when we were in college but it goes way beyond that now. We are as different as you can imagine, but when we get together, it's like nothing has changed. They don't care that I can't answer questions quick anymore - or even remember the question! They make me laugh with the stories of their lives. We have sleepovers. They meet me for lunch and they send e-mails and cards. We have a 25th anniversary to look forward to and hopefully Homecoming if I get up the nerve! I am truly blessed to have these friends. They remind me to live - that I'm not dead yet! I love each one of them very much. That is why my tatoo is very special. When you know you're dying, you don't really care what everybody else thinks as much. :)

I did it!

Well, I did it! I survived! Chip's family came, ate and everything went well. What makes me the most proud is that I was able to do it without having to take a pill for my nerves. Having company usually stresses me to the point where I would need one. It has been very nice that we have been off for Fall Break this week so I could take my time planning for this weekend. Yes, I needed a good, long nap after they left but that is not different from most days. Another thing that easily stresses me is packing and I am trying not to think about the fact that we are leaving for Pigeon Forge tomorrow after church. I keep telling myself that we will take our time packing when we get home but I can already feel it stressing me out. Isn't it stupid that something like packing could actually cause me to have a panic attack? It makes me so mad at myself but I'm afraid I won't be able to avoid those pills tomorrow!
I have had some people mention miracles to me and I want you to know that I very much believe in miracles. I believe that God can and does perform miracles. I have seen him heal people completely from disease. I believe that he has can use doctors/medications to heal us. In my case, I think it would be a miracle for my disease to be prolonged several years. I already think it is a miracle that I have not been violent with my temper - which is a typical first symptom (and my biggest fear). I also have to balance my belief in miracles with my knowledge that God does not always choose a complete healing. I have to accept the very real changes that are happening to my body and mind - oh how I wish I could ignore them! So they way I choose to live is in acceptance. I accept that I have this disease but I am always open to miracles that God may have for me. I pray that he is not done with me yet!

Today I am thankful for my in-laws. They are wonderful people.

Why I do what I do

I have had a couple of people ask me if I intened to share this with my kids and my answer is absolutely! I have written them some letters but this is a much better way for them to look back and know about their mom. I want them to see the good and the bad so some of you may have to make Chip share the whole thing with them! :-) Shelby and Cole are the reason I do what I do. They are my reason for getting out of bed in the morning. If it weren't for them, by now I would have left Chip so that he could move on with someone else. He is a great man and he doesn't deserve this life. And without kids I would be somewhere I could stay numb most of the time. Somewhere I could forget that I am scared to death. Somewhere I would not have to look at the faces of the people I love and know that I'm going to hurt them. But because I have those 2 precious kids, I stay. I guess God knew what he was doing when he gave them to me.

My poor Mama

I have just spent an hour and a half forcing my ice cream maker to turn by hand. I had to get the ice cream made because Chip's family will be here tomorrow but I really wanted to throw it out the window. So instead of thinking very nasty thoughts about the ice cream maker, I thought about what my next post might be. I ended up with several ideas and hands that are too sore to type.
My mom is one of the strongest people I know. Not only does she have 2 daughters with Huntington's Disease, she has also lost her dad, her mom and her husband in the last 3 years. My dad(step-dad) got sick very quickly with a neurological disorder and ended up dying in a matter of about 3 years from ruptured intestines. So she is all alone for a second time. She says that the only reason for living anymore is to try and stay healthy long enough to take care of her girls. That is sad isn't it? Me and my mom and my two sisters all live within 5 minutes of each other. Me and my mom and my older sister all attend the same church and our children attend the same school. It is a little too close sometimes for me but I do love them! Me and my sisters are night and day. Imagine me in the middle. My oldest sister is at one end of the spectrum. She is very conservative and she's always happy. Not only is her cup always half full - she thinks it is completely full. For those of you who know me, that can be very annoying. I wish I could always be that positive but I am a realist. My youngest sister is the complete opposite. She is very open minded except about the whole HD thing - she would prefer to ignore it! As different as they are, I love them both very much. My sisters and my mom and some of the best friends I have.

Tonight I am thankful for a clean house. If you know me, that doesn't happen very often!

Indiana University

Let me just begin by apologizing for all of my grammatical errors. I know that it is probably driving several of you nuts and yes I am aware that I have several incorrect sentences but if I take the time to go back and correct them, it would make me crazy.
After my sister tested gene positive for Huntington's Disease, she also got involved in the Predict-HD study at Emory. I also got us into a study at Indiana University that would be doing a detailed study on eye movement. They were taking all at risk people so I talked my younger sister into going to do this one with us. They flew the 3 of us into Indianapolis and put us up in a hotel for the study. It was just as exhausting as the ones at Emory. We also met a neurologist that we really liked - she spent time talking with us and answering our questions. The eye study watched you perform tasks while a camera is attatched to your head. Very cute! The reason for this testing is that they believe there is a difference in the eye movements of HD positive people and they want to see what and when that occurs. We were told that they had enough funding for us to come back one more time in 18 - 24 months. We would not be able to convince my younger sister to come back. The whole thing stressed her out a little too much. But when we did come back we were told that they were getting some great data from the testing and they were asking for funding for new research. They wanted the funding to be able to do they eye tests while we were in a MRI. Sounds fun? Anyway, we did the same tests the second time and met with the neurologist again. Dr. Joanne (everyone calls her that because her last name is impossible to pronounce) was very helpful again and we wished that she were closer so that she could be our neurologist. There aren't any neurologists here that specialize in HD. The coordinators told us that many people come from very far to see her and that if we came back for the next study, they would schedule an appointment w/ her at the same time. We were excited about that possibility! They did get the funding for the new research and we were invited back this past June. We had to do the same eye tests on the first day as usual and then on the second day, we had to do them in the MRI machine. That wasn't pleasant. I am not a fan of the closed in spaces to begin with and then I couldn't close my eyes. I had to keep them open and do the eye tests for about 50 minutes - and not move! We were also able to have actual appointments with Dr. Joanne which was good and bad. I went first and it was so nice to talk to a dr. who knew more about HD than you - here I feel like I am the one giving them the information. She did tell me that I am further into the disease than I thought, told me some things to watch for,gave me some suggestions and put me on Aricept for my confusion & thinking. Aricept is what they give Alzheimer's patients. She wants me to come back once a year right now. It will be worth the trip there once a year to see a dr. who knows what she's talking about.

My Sister

It was 6 months after I went through my testing that my oldest sister decided to be tested herself. This is the same sister who had been upset with me for being tested and I'm not exactly sure what changed her mind but she did. She is 7 years older than me and I thought that maybe since she wasn't showing any symptoms yet, that she would be negative. She also went to Vanderbilt to be tested and saw the same neurologist that I did and he told her that at this time he did not see any symptoms in her so we were all very hopeful. My sister did not believe that she had it but she did and she was devastated. And do you know what? So was I. I lost it. I remember being at the alter that Sunday at church and we just sobbed and sobbed. Maybe it was the first I had cried? It did not seem fair that we both had to go through it. I was prepared for it and she wasn't. Up until this point my attitude toward God had been, I'm going to fight this. After finding out about my sister, my attitude changed to being angry at God. I just didn't understand why it had to be both of us. I do have another sister who is one year younger than me. She is not showing any symptoms and she has not been tested yet.

Predict-HD

The Huntington's Disease Society of America has several Centers of Excellence around the country that specialize in the care of HD patients and that is where they do most of their research. The closest one to here is the one at Emory in Atlanta, GA. As soon as found out I was gene positive for HD, I called Emory and found out what I could get involved in. At that time, they were recruiting for Predict-HD which is for people who were gene positive and were not showing any or few symptoms. This would be an observational study that I would participate in once a year for the next 5 years. The purpose of the study is to hopefully, find early predictors of the disease so that they can target research to those. Each year I would go through tests that would make make you crazy if you weren't already, more blood tests, depression tests,evaluation with a neurologist, Chip would have to fill out a survey and every other year a MRI. I was excited to sign up because I finally felt like I was doing something. I went to Emory that October and felt like a rag doll by the time they were done with me. They ask you to do so many things with your brain that you are exhausted at the end. I remember that year after filling out all of my depression surveys, they came back to me very concerned. They told me they couldn't allow me to continue in the study if I stayed this depressed and they suggested therapy. I felt terrible. What had I answered so bad that made them think this? I thought I had been holding it all together very well at this point, I had hardly even cried!

Today I am thankful for the beautiful fall weather!

Testing

We have Chip's family coming this weekend and I have been cleaning this morning. But now I'm tired and need a break so I thought I would blog a few minutes! I know this is taking me forever to catch you up but I promise I'm hurrying. When I left off, I had made the decision to be tested and find out for sure if I had Huntington's Disease. At that time it was 2003 and I was 27. I made my first appointment in June and got my clearance from a psychiatrist that I was able to handle the testing. Like I said before, once I made my appointment, my family would not speak to me about it. They thought I was making a mistake. I talked to my pastor about being tested and he was very supportive. I told a few friends but not many. After the way my family had reacted, I wanted to wait and find out what the test results were. I was nervous but ready to get on with the process by the time the appointment came. One of the questions that the genetic counselor asked me was whether or not I thought I had HD and I answered yes. In my gut and my heart, I just knew that my body and my mind were changing. We had to answer a ton of questions - what if I did and what if I didn't? Then I had to see a neurologist that specializes in movement disorders and he examined me and then went out to talk to the genetic counselor. They came back in and wanted to know if I wanted his opinion of whether or not I was showing symptoms and of course I said yes. He told me that he believed I was already showing early symptoms with my abnormal reflexes all over including my eyes and my depression. This did not surprise me that much since it was things I already knew. After that the genetic counselor drew my blood and made my follow up appointment for 2 weeks. I was very calm through this whole process. It just felt like something I had to do. After I got back from the testing that day my mom called me and asked me how it went and I told her what the dr. said and I remember her saying that there was no way he could know for sure. My older sister still thought I was making a mistake and so it was difficult talking to her for a while. I kept busy for the 2 weeks and tried not to think about it as much as possible but it still seemed to take forever. We sent the kids to Chip's parents for the night because we weren't sure how we would feel or act and we didn't want them to know what was going on. I remember sitting in the waiting room thinking "it's not too late to back out." And when the genetic counselor came to get us I knew by the look on her face. It wasn't sad but it wasn't happy. As soon as she sat us down she told us that she wouldn't make us wait and she showed me my results. I definitely had Huntington's Disease. For those of you who know what it means, my CAG repeat count was 46. And do you know what I said? What now? I didn't cry. I was numb but I wanted to know what to take, who to see and where to go. I think that surprised her but she gave me some information and talked with us a while before we left. As soon as we got in the car, our phones were going crazy so we barely had time to take it all in. Do you know how we spent that night? We went to Media Play where I got several books I had been wanting, Chip got another season of the Sopranos and we got take out from Outback. We went home and spent the night escapaed in our own little worlds. That is how I would spend the next several months, trying to pretend nothing had changed.

To be or not to be

After both kids were born, I still wanted to be tested to find out if I had Huntington's Disease but I obviously didn't have a reason to rush it now. From the information that I received from the Huntington's Disease Society of America, I did find out that I needed to get any insurance in place that I might want before I tested. I had life insurance but I didn't have long term insurance which they highly recommended. So we had our friend, Todd, to start searching for the best long term care insurance he could find. Believe it or not, it is hard to find for a 26 year old. But we did get it and we are very thankful that we have it. Every year when we go to Convention, we meet people who wish that they had long term care insurance because once you start showing symptoms of HD, obviously they will not give it to you. Todd did tell me that I needed to have the policy in place for a year before I was tested - just to be safe.

After Shelby was born was when I started having problems with depression that I couldn't bounce back from. I started on medication and every time the dr. tried to take me off of it, I just couldn't. Of course, the fact that I was having depression concerned me but the dr. kept telling me that it was probably just post partum and had nothing to do with HD. After Cole, it continued to get worse and I realized that I was never getting off the anti-depressants. Or should I say Chip really didn't want me to go off of them!? :-) In 2002 I also began having headaches that I couldn't get rid of. The dr. thought it was stress and kept me on muscle relaxers and anti-inflammatories but they were non stop so he sent me to a neurologist. Do you know how nervous I was to go to a neurologist for the first time? It felt like a bad omen. I dreaded it - not because of the headaches but because I knew I would have to tell him about my being at risk for HD and telling a neurologist made it real. Well he examined me and said that I was having migraines and rebound from too much ibuprofen. After much medication and injections, they got a little better. But for most of you who know me, you know that it is a rare day that I don't have a headache. I try to be thankful that they are not migraines very often. Anyway, during the examination, he checked my reflexes and checked them again. He asked me several questions and explained that my reflexes were way too jerky (there is a medical term but I don't know it!). I explained to him about my being at risk for HD and he looked very concerned. It was then that I knew what I had felt in my heart for a while - I was beginning to show symptoms. He told me that I needed to see a movement disorder neurologist at Vanderbilt or be tested but HD was beyond his expertice. It was also at this time that the Huntington's Disease Centers of Excellence began recruiting for people who were HD positive to participate in observational studies. These were the first studies being offered and I was very excited about them and very interested in participating in them. So between the neuroligists exam and the new studies coming out, I thought that it was definitely time to be tested. Chip was very supportive but my family still thought I was crazy. In fact, once I made my first appointment, they would not speak to me about it all. I had to first be cleared that I was sane enough to go through the testing. Ha! Ha! And then I would go to Vanderbilt for 2 appointments. The first day, I would see the genetic counselor, a movement disorder neurolgist and then if I still wanted to go through with it, they would draw my blood. On the second visit, 2 weeks later, they would give me the test results.


Tonight I am thankful that my kids still like doing things like making beds/tents out of big boxes . :-)

What was he thinking?

I remember exactly where we were when I told Chip about the Huntington's Disease being in my family. We were sitting in the parking lot at the Wal-Mart on Fort Campbell Blvd. in Clarksville. We had been dating a while and it was starting to get serious. I told him that he was going to have to seriously think about whether or not he would want want me in his life because if I had Huntington's, it would be a life of heartache. Of course for all of you who know Chip, he is the positive thinker. "There was no way I was going to get this disease and if I did, it would be worth the time we had together." That all sounds so easy now! I wish his parents had shook him and told him to stay away from me. He is too good of a man to deserve what I have and will put him through. But we were young and in love and anything seemed possible so we were married.
In 1993 was when the test became available to be tested to find out if you have HD - even if you weren't showing symptoms - and I had always intended to take that test before I had children. But in 1997, after only being married a year, we found out I was pregnant with Shelby. It was a complete surprise and not in our plans at all! In the back of my mind I knew that if I had this disease, then now I could pass it on to the baby. But I was so caught up in being in love with Shelby that nothing else mattered. I had planned on teaching full time after she was born and I just couldn't leave her. We had to scrape by sometimes but I never went back and I don't regret that. About 6-9 months after she was born, I started planning on being tested and my family went nuts. They all thought I was crazy. Why would I want to know if I had the disease before I even had the symptoms? When I tried to explain that it would help me decide if we wanted more children or not they thought I was criticizing them. My older sister said that I must think that she's irresponsible for having 2 children without knowing if she had the disease or not. My mom did not want to start thinking about HD before we had to and she just thought I was too young to be thinking about it. Chip was okay with my decision to test but he wasn't crazy about it. I felt like I was crazy for wanting to know so I decided not to test before we got pregnant with Cole. That is a decision I still regret. So now I have this disease and 2 children with a 50% chance of having it too. It was not long after Cole was born that they started doing in vitro on women with HD. They take out the eggs and only fertilize the non HD eggs. Why couldn't I have waited? Anyway, looking back, I am thankful that I had my children at such an early age because I want to be as much a part of their growing up years as possible. Hopefully, I will be able to drive until Shelby starts driving. I do believe God gave Shelby to me when he did because he knew how much I would need her now.

Today I am thankful for the rain.

Dating and being at risk

I consider my self blessed to have been shielded from the effects of Huntington's Disease while I was growing up. For the most part, I was able to lead a normal life. After several years with my step dad, he became all that a dad should be to me. Although I didn't see it at the time, God was looking out for us when he put my mom and my step dad together. I guess I always knew that I had a 50% chance of have Huntington's Disease but I didn't give it much thought until I was older. It didn't occur to me how it might affect my future until I was dating Jason in high school. He and I had dated for a while and I told him about HD in my family. He had even gone to a funeral of someone in my family that had died with HD so he was aware of how bad it can be. He talked about me being at risk for HD with his dad because his dad was in the medical profession. Do you know what his dad said? He told him how horrible Huntington's Disease was and that Jason would be smart not to ever marry me. I thought that was horrible but looking back, he was right. He was just looking out for Jason and trying to protect him from certain heart break. And if it were me today, I would tell my kids the same thing. That was when I realized how much this disease was going to affect who would want to marry me. The next guy that I would date and tell about me being at risk for HD would be Chip.

*In case you're wondering - For any of you who know Jason, you know that his dad's advice went in one ear and out the other back then so don't think badly of him - that is not why we broke up. :-)

Tonight I am thankful for so many great friends who love me no matter what!

In the beginning

My grandmother got Huntington's Disease from her father. She and my grandfather had 5 children. My grandmother was already in a nursing home when I was born and we would visit her but I never knew what was wrong with her. You see, Huntington's Disease isn't talked about in a lot of families - it's like this big dark secret. My dad was the first of the siblings to begin showing symptoms in his early 30's. He was always an angry man but the disease made him worse. He became violent with my mom and with us. He started having problems remembering how to work on machines at work. And his hands began to shake. He went to the doctors at Vanderbilt and at that time all they could do for him was give him Haldol. There were no anti-depressants like there are today. He wasn't sure the Haldol was working and increased his dose and ended up shooting and killing himself. He was only 37 years old. I was 7, my sister Kim was 6 and Angie was 13. He had always said that he would not let us see him suffer like he did his mom. And I always thought that was horrible but now I understand. Within a year, his mom also died. And over the course of the next several years we would learn that 2 of my aunts also had HD - both of them would also commit suicide. We would also find out that my dad's brother had HD, he would be the only one to actually live out the course of the disease. So we had one aunt that didn't get HD out of 5. Those odds suck!
A year after my dad died, my mom met a great man at church and married him. He had 2 sons and she had 3 daughters, we were almost like the Brady Bunch. Only we weren't that happy right away. You can imagine how thrilled I was to have a house with boys! But once they were married, it was easy to lose touch with my dad's side of the family. Especially since they were not close to begin with. And the fact that we could avoid thinking or talking about HD, made it even easier. So for several years we only talked about HD a little and my mom kept in touch with my aunt every now and then and that was okay with us. But unfortunately, time ticks and you can't avoid it forever.


Today I am thankful that I have the kids are off on fall break so we can slow down a little.

Thank You

Okay, you guys are sweet! Thank you for your sweet and encouraging words. Just remember that when you feel like all I am doing is complaining. For the most part I am going to keep the really technical stuff out because to be honest, it gets more and more confusing to me. You can google or go to hdsa.org and find out anything you want to about Huntington's Disease. Yes, it is as bad as it sounds but fortunately it progresses slowly. Where am I now? I am still in the early stages since I can still function on my own. Mentally, I have problems with depression, anxiety, panick attacks, focsusing, memory loss - especially short term and organizing. Physically, I am having problems with space (bumping into things), balance,tripping over things, and falling. Yes, for all of you smart a's - I know I was clumsy before so just imagine it even worse! :-) I am tired all the time which frustrates me very much. It keeps me from being able to do the things I want to do with my kids and around my house. Things could be much worse and I am very thankful that they are not! There is a lot I want to rant about but I want to give you a short history lesson fisrt. So bare with me!

What Do You Think?

I have been considering doing a blog for a while now for several reasons. The main reason being that I have so many people tell me that they want to know how I am doing but don't know what to say or how to ask. I hope you all know that I don't ever mind anyone asking questions but I do understand that it makes some people uncomfortable. With a blog, no one has to ask questions if they don't want to! I have also heard that blogging is almost as good as therapy and I'm hoping for some cheap therapy! No really, my doctor thinks that is would be good to get my thoughts "out there" and possibly help someone else - or mess them up! I have had several reservations, however, about starting this blog. If I am going to be completely truthful, Huntington's Disease is very ugly and I am worried about who I might offend. I worry about who will read this and think that this is one big pity party and it isn't. I still have a lot of life left to live and that is what I want to share with you in this blog. I also worry about who will read this and think I have included too much about God and who will think I haven't included enough about Him. When I was sharing these worries with a friend of mine the other day he encouraged me to do the blog and told me that my friends wouldn't take offense to what is written in the blog because they care about me. So I guess my question is for my friends. Do you think that this blog would completely depress you or would you read it? I will start the next post off from the very beginnig.