A good friend and supporter sent me an email the other day after reading the diary and stated how he likes that the kids celebrate what they can do instead of worry about what they cannot do. That statement is so true and is exactly how I see the kids act most of the time. Their attitudes dealing with dystonia makes our lives easier. 

Tyler was able to get into his baseball game yesterday. His coach gave him a new glove to use on his right hand so he played right field. My mother was in town for a few days so she was able to see the games. Samantha and Luke also came and watched (Luke just ran around). 

My mother and I are at the beach for a few days and Luke asked if he could go with us. When I explained to Luke that he could not go with us because he had school, Luke said, "no Dad, I am going to cut school." I asked where he heard about cutting school(naturally I figured his mother taught him that) but he said he learned it from tv.

 

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Tyler participated in baseball this weekend with his Mustangs baseball team. It was very different because Tyler was able to go on the field and actually stopped a ball that was hit to him. He will try to stop the ball with his glove and then there is a player in the field with him that will throw it in or he will take his glove off and try to throw it himself. The Mustangs had a 10-0 lead so they were in no worry of losing. It is an experience that he or other people with dystonia probably would never get if it wasn't for the team and coaches he is on. Now he wants a glove to go on his right hand(the only hand he can use).

Samantha showed some emotion this weekend and I believe a lot of it was because she is scared about the January 20th surgery(DBS). She sits on the bean bag for comfort but cannot get up without rolling over on her side and pushing with her hands. Her back pulls.

Both Samanatha and Tyler are getting great grades and doing well in school. Luke is having fun n school and had two birthday parties to attend this past weekend.

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This morning Samantha goes into the hospital to be "fast tracked" for her DBS(deep Brain Stimulation) surgery. Fast track means that they put you through all of the tests so that they have a baseline to work with. She does not get surgery today but tthey test her functions and tell her what to expect. Everyone is a little nervous about the surgery. I feel like the more times we do a surgery like this the larger the risk of something going wrong. We had also hope to hold off on surgery for as long as possible because of Samantha's age and head growth. The longer we wait the less likely her head will keep growing and the less likely the leads will migrate and require another surgery. These things are weighed with the lack of mobility. Samantha and us feel like she is better trying to get some of the mobility back and discomfort away now.

The kids all got to go see the Gators play this past weekend and had a blast. Michelle took them while I attended the Dlorida Society of Neurology conference in Orlando. It was worht meeting some new contact for the foundation and the exposure to nuerologists all over the state of Florida.

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I went to meet my syblings in NC this weekend to get some closure to my father's house and divide up the heir looms. I was not looking forward to it as many will know or find out that syblings have different agendas and deal with things differently. The weeks leading up to this past weekend made me dread the process. I will say now that it is over, things could not have gone better in my eyes. We had a huge fight early that was worked out and it probably let all of the air out of other fights. Everyone ended up getting the things done that my father would want without fights. It ended up being very good for our relationships which is most important. It was emotional to go through my parents things in order to close the house. My father was a big supporter of Tyler's Hope for a Dystonia Cure and will continue to be through his estate gift to the foundation.

Tyler has been  meeting new friends, getting to know his baseball team better(won both of the double headers this weekend), and reading. I am very proud...

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School is in full swing now and each of the kids goes in a different direction since they are all at a different school. I try to take Luke to school while Michelle take Samantha and Tyler in the truck so that she can bring their wheelchairs.

Tyler has been walking so well lately that he was able to take the bus to school yesterday. It is a long work for him but it gives him independence while saviing us time and money. Tyler worked with his aid today and had a good day at school. He has started to go to physical therapy again because his hips are starting to slide up. He puts almost all of his pressure on his right leg when he walks and the left leg is shorter. His physical therapists is trying to stretch his hamstrings and hips instead of having surgery. He is doing well right now.

Samantha is getting worse and is showing more symptoms. She is more uncomfortable at times now. Her back twists and her arms are bad. When we play chess or uno she needs help now. She is getting very pretty and slender...

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People with dystonia deal with daily challenges that we forget about. We have become accustomed to them so we do not talk about them as much but they don't go away. Small tasks to numerous to describe are real challenges. I wish I could call all of the people we have met that are dealing with dystonia every day and just encourage them to stay positive until we cure this nastiness. As my good friend Brian said this weekend, "it is just unacceptable".

I had a great meeting with some advisors yesterday and we will be voting on some very good research projects next week. We have several grants we will fund this month.

As a reminder of what this disorder is like, I have a story that is just a small perspective of what these kids deal with each day. Tyler and Samantha don't complain so we forget what they are doing until we take a deep breath and watch. Tyler wanted to sleep in his own room upstairs last night so he could get some good sleep in his bed. About a half an hour later we thought we heard Tyler...

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I am a little excited about a lunch meeting I have today. We have been tring to get Samantha more involved in Tyler's Hope in a way that it does not look like everything is about just Tyler. Mandee O'leary called and was our answer. Mrs. O'Leary is women's lacrosse coach and the University of Florida started a new program. Mandee and the team want to adopt Samantha and Tyler's Hope. Weare meeeting today to talk about things such as pledges for the amount of goals the team scores in a season. They were talking about getting Sammy a jersey or gear or something. She is excited and so are we. I cannot be more thankful for people like Mandee and the UF team for doing something to support their community and help people all over the world while they compete. I have bought into it and will be attending the games and promoting these excellent people.

Samantha is trying to deal with her medication(causes depression) and is adjusting somewhat. She knows it is the medication that makes her cry.

Tyler is at the doctors today getting programmed. His DBS seems to help him a little more now than in the past.

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Samantha has been taking the drug we ordered from Europe for about two weeks now. (Tetrabenazine). She seems to have a side effect of crying a lot. At times she cries uncontrollably and does not know why. Hopefully we will get through the emotional stage and see some benefit. This drug can causedepression. We are going to up her doseand increase the number of times she takes it just to see what it does to her dystonia. If she continues the crying spells than we will stop the medication. We just want to find out if this class of drug helps her dystonia.

We held the 4th annual Tyler’s Hope golf tournament and all of the functions starting on Thursday through Saturday were great.  The weather was supposed to be very bad all weekend and other than a half an hour of rain it was great. Everyone was very supportive and had a great time.  I am exhausted so I can only imagine how exhausted my wife Michelle is. The volunteers were many and did a great job under the guidance of a new superstar, Sonia Fox.  The kids had fun and helped out all weekend as well. Some friends of theirs came into town and hung out with them while the festivities took place.

There were several touching moments for us this weekend. The board of director’s recognized my father and grandfather to the kids for his role in the foundation and continued help from above.  The CNN video replay was also very touching and made many of us shed some tears. The group was bigger than ever and the awareness has spread significantly. I get very energized recapping what progress we have made and what we...

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Tyler and I went to the beach last night so that we could wake up and go down the St. John's River for some shrimp. Tyler is able to do a little more these days because he can move without his wheelchair and use his right hand well. I am always reminded when I see him doing so well that it is my perspective because I have seen him worse. Other however would think he was doing poorly. We went to dinner a t a local ST. Augustine restaurant and I noticed him watching with some envy people across the road playing volleyball. He wants to do everything. Tyler said he wanted to give the man sitting near us a Tyler’s Hope card because the man was staring at him. My friend Jimmy who was sitting with us decided to take him a card when we were leaving and the man was very curious about what Tyler had for several reasons but the biggest was because Tyler was always smiling and seemed very happy. His symptoms are obvious, especially when he eats but it is also obvious to everyone that comes in contact with him that he is positive...

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