It was a good weekend with the family. We had the 2nd annual Tyler's Hope Poker Run on Saturday and 70 motorcycles showed up. The kids all had a blst sitting on some of the motorcycles, listening to the band, and playing in the field. I particularly liked watching Luke eat ribs. The Mustangs baseball coaches(Tyler's team) contributed the food and cooked it for us.

Samnatha has been compalining of pain in her back. This really scares me because of all the symptoms that I see dystonia cause, the back issues are horrible. Sam's back pulls so much at times that it jolts her out of her seat. It is not very frequent right now but we are watching it closely.

Tyler and Samantha had botox injections last week and they seem to help a little now. Tyler has had the dystonia progress a little into his neck. He got some botox injected into his shoulder as well as his wrist last week. Sammy had injections in both of her lower legs. Sammy received 300 units of botox this timea ... Read More »

Michelle and I are on a nutrition/work out program and I recommend this for anyone dealing with stress in their lives. It not only forces you to become healthier physically but also mentally.

We have had a close friend diagnosed with a brain tumor and it came out of nowhere. We are very optimistic that it will be taken care of by the same excellent doctors that we have grown to know and trust in. Our minds have been on speedy recovery from this scary bump in the road. I am writing this to remind people that anything can pop up when you least expect it and we should be grateful for good friends and family. Sunday was difficult because I wanted to call my Dad and talk about things and let him know that I loved him. People would say happy father's day and it would make me a little sad until my cousin sent me an email re ... Read More »

 The CNN story is still getting us exposure and we have received many encouraging emails and calls.

Carrie's marathon site is bringing in some good donations and our Poker Run is coming up in a little over a week. We will have police escorts and safety riders. Non-riders may have the option of riding on a bus this year.

Tyler has been very twisted lately. I have noticed it more and I am ... Read More »

Yesterday was unbelievable. I never would have guessed how much exposure and support would be generated from the article with CNN. I am not sure what time the video went on CNN.com Thursday morning but it was the lead report on the front page and I received many calls and emails before I knew it was up. We started to get the word out in the midmorning so many people were not able to see it until even today. Last night it was the third most emailed video on CNN and today we are #1. Dystonia was the fifth most searched word on the Google search yesterday.

The hits kept coming and it seems even more people watched it last night. My servers could not handle th ... Read More »

This week Michelle and Tyler went on their trip to Washington DC with Tyler's class for the annual safety patrol trip. I am not sure who was more excited about the trip, Michelle or Tyler. Tyler was able to take his electric wheelchair on the bus. Michelle said they walked many miles the first day so it is very good that the school was able to work out a handicap accessible bus. The bus driver has been very good to Tyler. Having his chair is essential for him to be able to keep up but it would have been worse with his dystonia acting up due to fatigue. The fatigue comes from lack of sleep. They did not sleep much on the 16 hours bus trip and I don't think Michelle is getting too much sleep now.

Today is the last day of school for both Samantha and Tyler. We are very proud of them both for doing so well. We know of so many dystonia sufferers that are unable to continue to go to public school or struggle because of medications and symptoms. Sam and Tyler are definitely fighters and excel regardless of their dystonia. Sam and Tyler both received principal awards, which means they had good attendance and good grades throughout the year and bug awards which means they brought up a grade without dropping any. Tyler received the President's award for maintaining a 3.8 or higher all year and earlier this year he was awarded the citizen of t ... Read More »

The first day of the hurricane season.

I started writing this blog when Tyler was diagnosed so that people could understand what dystonia is like as he progressed. I found out that the blog acts in many ways that I did not anticipate. Doctors from overseas have emailed asking about updates because of their curiosity with the progression of the symptoms as well as the treatments. Patients and families have emailed me saying they read it to see what to anticipate with their symptoms or loved ones. I try to give some insight into what we as a family deal with while dealing with generalized dystonia. I rarely if ever talk about too many things outside of what is directly affected by the dystonia. There are many s ... Read More »

This weekend is the Garden Party fund raiser in Raleigh held in honor of Samantha. Samantha was excited because she and Michelle were able to fly up for the event. It will be a great girl’s get-a-way.

Michelle and Samantha were concerned with how they were going to get around in North Carolina since Samantha needs a wheelchair most of the time now. They called the airlines and were told they could ship the chair through or even leave it planeside as they took their seats. Things never go as smoothly as people say they will. Their flight took them through Atlanta with a two hour layover. They sent pictures of the two of them making faces and playing around so I was happy they were having fun. They asked the check in d ... Read More »

Samantha has been feeling some pain and complaining of her body jerking and pulling. Her left foot is also turning in more. I spent some time last night trying to flex her ankle and foot but it was harder than usual and she grimaced some in pain. Although we do not talk about it much, I am a little worried of how her symptoms will progress. Will it affect her back? Will it affect her speech and eating like Tyler? What is the next area we will need to deal with?  I just found out that the secret PAL visited the house today and brought Samantha a cool orange and blue bracelet for her first communion. She was suprised and after all of ths time we still don't really know who the PAL is.

I almost feel guilty saying "we" because my kids and others live with the pain physically and have to endure the handicaps t ... Read More »

The in-laws from Miami came into town to see Samantha's first communion. My father-in-law is Jewish so it was big to get him to the church for Samantha. We caught him trying to take the money out of the collection basket until we told him to put money into it. They are good people and always support the kids and us very much.

Samantha did great at her first communion. She looked beautiful in her dress. Samantha has had difficulties walking as she has progessed so she was in a wheelchair throughout the first communion. A friend of hers, Grace, helped push her chair and it was really nice. Samantha's aunt Barb drove down from Atlanta to support her as well. Samantha's godfather spent all day with her and was wonderful to the kids as always. Between getting her godfather back into church and getting my father-in-law into a church, I was looking around for some crazy excitement to start up. If you know either one of these guys you would understand.

I spent about 35 ... Read More »