Sunday, January 30, 2005

I have been having alot of difficulty getting into my journal, forgetting how to sign in and such. It only took me 2 hours and alot of frustration today. We have been really busy this week with doctors and getting suits for going to Washington. We went and talked to the school principal and they will excuse Austin for that 9 days that we will be gone. He thought that it was a great and educational opportunity for him. There will be alot of touring to do and after Washington, we are going to go ahead and do our vacation and go down to the Carolinas and see some lighthouses and explore alittle............who knows maybe we will even find a new home place! I have been working on my speech and Allen is going to have to help me with some of it. He is excited about it as well. Austin is just looking forward to the trip. I have had alot of phone calls from friends and extended family wishing us well. This week has been tough in I having more difficulty understanding and responding to simple conversation. I have had several early onset people contact me through the Chapter needing help. They had become lost in getting answers from their doctors or didn't know how to deal with this new chapter in their life. Heather in Oklahoma is only 29 and was diagnosed a couple of weeks ago with Early Onset and Sharon in her early 40's. It was very fulfilling to talk to them both. Austin, Allen & Courtney are back from the store, so I need to go for now.
Take care and God Bless!

Love Always, Tracy

Wednesday, January 26, 2005

It has been a very busy last couple of days. I had a follow up appointment with my neurologist on Monday. He gave me a mini-mental exam in the office for insurance purposes he said. I did pretty well. He said that the changes that we are seeing with taste, smell, difficulty (fear) in traffic and getting meds all mixed up again and failing comprehension is all to be expected. He felt that the Namenda has been a great help in the progress that I have made. He raised the Exelon to the maximum dose, that is all there is left to do until maybe someting else comes available in the next couple of years. He said the lexapro is what is causing my weight gain and we will be changing that I when I go back to see my psychiatrist in a couple weeks. That will be a relief to change that. We have a new addition to the family. Peaches is a 11 month old pitbull. She is very playful and is trying to win Daisy over as a play mate. The great news is we were asked by our Chapter to go to Washington and speak to the Public Forum Policy. I have so much I want to say. We need better and quicker diagnosing methods so, so many families don't risk loosing everything they have until they can get a diagnosis, because it is suppose to be an old person's disease. We need to modify programs that are out there for seniors that will also cover those that are diagnosed with Early Onset. We need a support system for our children, there is nothing for them and we need to increase the education to families about Early Onset and remove the misconception that it is an older person's disease. These are topics that we hope to speak about. We are very excited and looking forward to it. I guess that is all for now.
Take care and God Bless!

Love Always, Tracy

Saturday, January 22, 2005

I have been finding it very hard to post this last week, just don't seem to be into it. There has been alot go on the last couple of days. Rebecca the Program Director at the Chapter called me and told me that the News interview has gone national! She said the office was going crazy with calls about how to get Young Hope, so I will take a box full of books into the office on Monday. This story has reached and helped so many people. I guess my goal has been met, but I don't know that my work is done yet. I was reading on the net the other day about a young woman of 29 with a 2 year old and was just diagnosed with Early AD. My heart goes out to her! I have been overwhelmed with e-mails from friends too many to mention all rooting for me on getting the word out there. This has been a difficult week for me, I have been loosing track of the days and messing up on my medications again, finding dish towels in the cabinets with the bowls and getting our clothes mixed up again. I guess this is all part of it. I go see my neurologist on Monday, I am hoping he will raise the Exelon. That is the only thing left to do at this point.
Take care and God Bless!

Love Always, Tracy

Thursday, January 20, 2005

Yesterday was really a rough day. Seems like when I think they are good days, they actually turn out rough. The furnace quit working about noon and I never thought to tell Allen out of all the times that he called me until about 6 in the evening. I was heating up the deep fryer for supper or at least I thought I was for about 45 minutes and realized that I had forgot to turn it on. I got my days mixed up and took the wrong days pills and Allen called me and asked me if we needed anything from the store and I said no and when he got home we were out of milk. So, from what I thought was a good day, wasn't. Today Austin stayed home from school, he has a cold. He lazed around in his robe all day and watched cartoons. I washed some of the curtains and vacuumed. I have been really tired though. I need to start exercising and work some of this baby fat off. I have a turkey loaf in the oven, so I better go check on it.
Take care and God Bless!

Love Always, Tracy

Wednesday, January 19, 2005

Today has been a good but long day. I have had so many great comments about the TV interview last night! There was an anonymous person that tried to stop the show from airing, she called the station and said she was my sister and the story was a lie. I have no idea what that person's problem is except they are so miserable in their own life, that they try to make everyone else's miserable to. The reporter however was smart enough to know better and has copies of my documentation from doctor's as well as the Alzheimer Chapter. It amazes me what steps people will take take and then realize what a fool they were. The story had nothing to do with them, but its sole purpose was to educate other's about Early Onset Alzheimer's Disease and remove the misconception that it is an older person's disease, it can happen to anyone. Anyway, I have better things to do with my life then stew about that. I got several e-mails from friends Chip, Sandy, Garnette, Chuck, Judee, Jeanette, Carolyn and Morris thanking me for the exposure to Early Onset. I have decided this is my purpose and I will do what I can to fulfill it. I did some laundry today and straightened the house up. Allen was alittle upset this morning, I have been having bloody stools, I know it is just hemorhoids. Speaking of, all of my FIL tests came back, they got all of the cancer in the colon, it is not in the lymph nodes and he is cancer free. I think he was dancing! Anyway, I need to get off of here and fix us something to eat.
Take care and God Bless!

Love Always, Tracy

Tuesday, January 18, 2005

Tonight was the TV News Report on Early Onset Alzheimer's, the story that was done on us. Just before the report aired we recieved a phonecall from the news station saying that they had recieved a call saying that this story was a lie. My husband spoke with them and we were in agreeance that it was some unhappy person out there trying to cause trouble, so the story went on. I also recieved an anonymous e-mail on one of my journals, that again is a very unhappy and miserable person trying to make others lives miserable as well. Just to answer any unanswered questions, I have posted 1 of my doctors records so that person could read for themselves the facts.

Tracy

Doctor's Records

Doctor's Records

Monday, January 17, 2005

The last couple of days have been busy so I have alittle catching up to do here. We've spent the last couple of days running back and forth to see Allen's Dad at the hospital. Saturday night Austin spent the night with his best friend Matthew, so Allen and I took a night for ourselves. We went to James River Grill and had supper and then did alittle shopping and then went home and called it a night. Sunday we slept in.........that felt so good not to have to get up early. Then we went and picked up Austin at his friends house and went back to town to the hospital and visited for awhile. I will be glad when he goes home, I get so tired of all of this running. After I got home, I cleaned out the refrigerator and called it a night. Today, the bus was late. I called the bus barn and the bus had broke down..............45 minutes later here's the bus. Then I had to go home and tidy up before the Reporter from channel 10 showed up. Allen helped me clean things up and then we had lunch and got ready. Finally, it's 2:10 and a knock on the door and we met Joy Robertson, the TV Reporter and her camera man, I think his name was Jerry. She talked with us about 1 1/2 hours, We talked about everything from onset to prognosis and how we are living our lives now. Allen said that I did really good, I know that I got lost a couple of times in conversation but I think that I did okay as well. It will air on our local station Tuesday night at 6pm. We will record it for Austin, future reference and a keepsake. Well, I need to go finish the dishes, so until later.
Take care and God Bless!

Love Always, Tracy

Friday, January 14, 2005

It is so cold here today, I think it finally made it to 22 degrees...............bbbbbbbbrrrrrrrrrr! The sun was shining today and made it seem very decieving. I called and talked to Jan Phillips last night in Oklahoma. It was so nice to hear the voice of a friend. Her and Wade are getting ready to close down for a week and go to California and visit her kids. We may go back to Oklahoma and visit them this summer, they have such a beautiful campground! I have been working on my 3rd book today. I changed the name to Young Hope A Tribute To Alzheimer's. It will conclude my first book and I am making several tributes in this book such as Alzheimer Jane who was a carer of caregiver's. A lady that I wish I had met, who has now passed away. Also dedicating chapters to The Gathering Place and DASNI and poems that have been written in memory of a loved one or by someone with dementia. Rebecca from the Chapter called me today and told me that she had been contacted by the editor of a newspaper in Arkansas and I was in the paper up there. I guess they followed the link from the other newspaper. She also told me that they are working on setting a story up on our local Chapter website about me and they are going to have a picture of me and Austin on there with the story. How cool! I should be so excited!!! but, I'm not. Just tired I guess. Tomorrow we have our first support group meeting of the year, maybe that will make me feel better.
Take care and God Bless!

Love Always, Tracy

Thursday, January 13, 2005

Today has been a rough day emotionally. It is very cold and dreary out. The low water bridges are still flooded from the California rains that passed through here last night. Mom called me this morning and gave me an update on my FIL. He is in stage 2 colon cancer and of the lymph nodes. He is coughing up blood, so they took his food away from him again and are going to do some more testing to see what all is going on. He is taking it very hard, Mom sure has her hands full. I was demoted as a moderator today from DASNI, that really hurts. I know alot of people would say, don't let it bother you it's no big deal. Well to me it is, because this was like another family to me and now I feel that I have lost them both all because of a simple message board that was formed there for several reasons and none of them out of spite. The reasons don't even really matter now. I will just do my best and hang onto writing my next book. That almost seems funny because I had dedicated 1 whole chapter to DASNI. My heart just isn't in it right now, maybe in time. I have cried and chatted with a friend about it and it still hurts. I hate this disease! It makes people see things so differently and misunderstand things. I guess tomorrow is another day.
Take and God Bless!

Love Always, Tracy

Wednesday, January 12, 2005

Austin just got home from school and is full of energy as usual. He had a good day and that is what counts. Today has been a pretty good day for me, lots of news to tell. First, the newspaper article for the interview that I had a couple of weeks ago was in the paper today. Natasha, the journalist did an awesome job! Then I got a call from Joy Robertson at KOLR 10. She is going to do a live report with Allen and me on Monday afternoon. She did somewhat of an interview on the phone, but wants to bring the cameras out. So, I have got to get the place spiffed up the next couple of days. Allen is not too thrilled about it all.................he HATES being on camera. I don't really want that either, but that is the purpose of all of this. I just thank God that he supports me through this. The bad news is, his Dad's bioposy came back today and he has cancer. I haven't got the full story yet, but they are going to start chemotherapy on him in about a month. I hate to say this, but I am not bothered by that at all. He has been so mean to me the last 5 years or so, I feel no compassion for him. I am here for Allen and his Mom, but that is all I feel. I hope that doesn't make me a bad person. Donna my sister-in-law called and checked on me earlier today and she is going to be staying another 2 weeks. That kind of messed up the purpose of Allen taking vacation time off to help with his Dad. But, it is too late to change it now. So, he may just go ahead and take the pay and work it anyway and make alittle extra money. He has so much on his plate right now...........me, his Mom and now his Dad. He needs all of the alone time that he can get, which lately isn't much. I am still working on my new message board, Dementia Rescue: www.groups.yahoo.com/group/dementiarescue. I have 15 members and am working really hard to build it up. I think that it really has alot to offer, just as DASNI does. Well, I need to go and feed my kid.
Take care and God Bless!

Love Always, Tracy

Tuesday, January 11, 2005

Finally a day at home! Those 4 days at the hospital really wore me out. By Sunday, I was looking for a bed for myself to lay in. My FIL should be home Friday, he is doing really well.............back to his old mean self. Yesterday afternoon, we ran by and seen Judee at the hospital. She used to be our Outreach Coordinator at the Chapter. I really miss her at our support group meetings, but as with The Gathering Place, all good things come to an end. Speaking of, I really do miss Linda. I miss that extra bonding that we had at the GP. I can't wait until we go see her in March!
Allen decided to stay home today, he said that he was really tired, however he spent most of the day outside working. I think he was really worried about leaving me out here in the boonies alone. I enjoyed the occassional company. This morning we also had a Web-x Conference that was hosted by the Oklahoma/Arkansas Chapter. There was people from California, Missouri, Virginia, Hawaii, Oklahoma and Iowa. We discussed topics for the Oklahoma Sumitt in March for Early Onset. It was a neat opportunity. Then this afternoon I hosted chat, I really do miss my sis Linda! It was a good chat anyway. I worked on catching up household chores and I am about to call it a day and relax for the rest of the evening. Rebecca called and told me the pictures for the children's book were about 98% complete...........YEAH!!!!!!!! I can't wait to see it. Well, I guess that is it for now.
Take care and God Bless!

Love Always, Tracy

Monday, January 10, 2005

It has been a very busy past few days! Friday my FIL had surgery. He had a hernia repair and some colon removed. That was a very long day...............he didn't go in for surgery until 12:30, but they didn't start until 2:00, he got out at 6:00 and was in recovery until about 8pm. We left the hospital about 9:30 after we found out how he was doing. He is a 72 year old man with a young person's organs, he did really well. Then we left there and stopped at Outback for supper, Austin was so tired, he began falling asleep at the table. We got home about midnight. While I was at the hospital I got to see some of my ex co-workers. Tracy Stroup, one of the nurses that I worked with. We gave each other a BIG hug and then I saw Chaplain Larry Cooper and he called Diane, the Pastoral Associate and got us on the phone together. It was so nice to see and talk to some of my friends again! Chaplain Cooper told me that he had put my book on a list of Reading Rescources there at the hospital. That made me feel good! Saturday, we headed back up to the hospital about noon. Allen's sisters Debbie and Donna are here from Northern Illinois to help out for a couple of days. They traded off staying with Mom in the hotel room and their Dad in the hospital. Barb and Sam, some friends of theirs came to visit briefly. Then Courtney called. She is Allen's step-daughter from a former marriage. She is 13 now and her Mom and her do not get along. So she was all upset and wanting to come and live with us. It is a very sad story. Sunday was another long day at the hospital. Debbie left about 10:00 to head back to Illinois. Donna is going to stay a couple of weeks and help out until Allen gets a week of vacation starting on the 19th. I will be so glad when all of this is over.
Take care and God Bless!

Love Always, Tracy

Thursday, January 06, 2005

It has been a rough day today. Started off by getting up and getting Austin ready for school and the truck doors were froze shut. Due to all of the flooding buses are still running flood and snow routes, which means we have to meet the bus at Country Corner in Charity which is about 5 miles away. It is only 15 degrees and Allen is at work. Normally my FIL would take him in these conditions but he is having surgery tomorrow and he is throwing a pity party for himself, so he wouldn't take Austin to the bus. I asked my MIL, why wasn't he taking him and she said he had to go get his haircut. At 6:45 in the morning! Come on!! That really angered me when I found out the roads were good enough to go 30 miles for a haircut, but not 5 miles to meet the bus. I called Allen to find out where the keys to the little mazda were. He knew something was wrong. #1-I'm not suppose to drive alone and #2-I had forgotten that it didn't even run. He found out what was going on and came home and took Austin to school. His boss was very understanding and then he went back to work. It has been so cold and snowy here all day, I think it finally got up to 20 degrees. I got most of the housework done, becasue we won't be home much to speak of the next couple of days with my FIL's surgery and all. He will be in the hospital about a week if all goes well. My 2 Sister-in-laws, Debbie and Donna, are traveling through hellish ice and snow weather from Northern Illinois, to get here for this. I hope they make it safely. It is not a pretty site from where they are coming from.
Take care and God Bless!

Love Always, Tracy

Wednesday, January 05, 2005

Today it has been so cold and rainy. All of the low water bridges are flooded out here. Buses are only running flood routes today. It is only 10 am and now they are calling school off early today. I just hope they get all of the kids back home safely. It has been a slow day for me, I just took it easy other than working hard to stay warm. I am sooooo cold anymore! I hosted chat today, it is always nice to talk with the girls. Austin is home safe and sound now, he said they are running flood routes tomorrow. I bet after the freeze we get tonight that school is called off tomorrow. I am going to try and post a picture of the flooding that we are getting here. I am just learning so be patient.
Take care and God Bless!

Love Always, Tracy

Austin enjoying his Spider Copter

Sinnamon and Tommy enjoying their presents!

Tuesday, January 04, 2005

I finally learned how to post pictures to my blog! See, you can teach an old dog new tricks!
Love Tracy


Austins Christmas Monster Truck!


Monday, January 03, 2005

Another busy day! I got Austin's room put back in order from the desk arrival of last night. After I got done, I looked around a moment and realized my little boy is growing up. He is getting big toys now instead of little boy toys. It almost made me cry. I remember picking up all of the little blocks and legos and now he is into gamecube and monster trucks. I miss the little boy toys and of course him being so little. I could pick him up and rock and we would cuddle. I remember, I used to hold him when he was tiny and watch him sleep and feel his breath against my cheek. I miss those times so much! He still likes to be hugged as long as no one is watching! We still have our closeness, but I miss the old times. After his room, I vacuumed and mopped the kitchen floor and gave 2 ungrateful cats a bath. They weren't very happy, but they do look and smell better. Now it is wind down time and relaxation for the evening.
Take care and God Bless!

Love Always, Tracy

Sunday, January 02, 2005

Today was a beautiful day for the most part, the rain set in about an hour ago. It is suppose to rain for the next 3 days, so the hopes that I had for outside will be put off till later in the week I guess. Allen and Austin have been bonding by putting a desk together that we got for Austin's room. It is an entainment center and desk all in one kind of thing. It should last him a life time or at least the rest of mine. I have been busy working on a project that I am taking to Linda's in California. I have lost some of my touch, but I hope it turns out well. I did a lot of housework today, laundry and vacuumed and cleaned out the fridge, tomorrow I need to start on some of my spring cleaning. As long as it takes me anymore, it will be spring before I get it done. We just finished supper and I need to go get the table and dishes cleaned up.
Take care and God Bless!

Love Always, Tracy

Saturday, January 01, 2005

HAPPY NEW YEAR!
Allen and I, had a great time last night. We went to Red Lobster and had supper, it was a 2 hour wait, but was well worth it! I had stuffed flounder with crab meat and shrimp scampi and Allen had steak and lobster. Then we went back to our room and enjoyed the jacuzzi. Oh, my gosh, it felt so good! Then we just relaxed and watched New Years happen through out the world and I feel asleep about 11:30. I told Allen to wake me at New Year's. He said he tried, "Babe, it's 45 seconds until New Year." I responded with, "That's nice, goodnight Dear." I was wiped out! These holidays are hard on me. But we still enjoyed ourselves and each other's company, that isn't something that we get alot of. We got home this afternoon and took Austin up to the school and broke in his gas powered monster truck that he got for Christmas. It is so cool! I even enjoyed running it..............don't have to have a license! Well, I need to get busy and put things away, tomorrow is another day.
Take care and God Bless!

Love Always, Tracy