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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The Secret Pal struck again. Each of the kids got stickersand were excited. The Pal just shows up and leaves thingseither by our mailbox or by the front door. You would think we would have accidently bumped into the Pal by now but we have not and the kids love it. Thanks again Pal.

Samantha and I went on date-night last night. She is definietly progressing. It was hard for her to walk evena few steps because all of her muscles are fighting it. I give hera piggy back ride up to the door of a place and then try to hold her up but her back and legs pull. Simple things like playing tik tack toe are very difficult. She now tilts the water glass to her to drink instead of picking it up. She cannot hold a glass like she once could. On the way to dinner she said she wanted to run around and play tennis. I told her a bunch of different things but she knows she cannot do that any more.

Tyler and Luke are doing good. We just paid $2700 for Tyler's shakes. Blue Cross does not cover his shakes but he needs them...

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Tyler seems to be doing better while Samantha progresses.

Tyler is growing up and adjusting to his dystonia but it also seems that his DBS is more effective than ever. He is able to do more things lately. He went camping this past weekend with his "uncle dewey" and a boy his same age. He has wanted to go camping for a while and he had a blast. They had a camp fire, cooked food, didn't wear shoes, told ghost stories, etc...

Samantha is having more difficulty each day but we are holding out on the surgery for now. We just received confirmation that her experimental drugs were shipped and we should get the very soon. It is harder for her to walk, use utensils, and dress herself because the dystonia is in most of her limbs. She is having a difficult time sitting up because of the strain on her back that is now affected. Thank God she has not shown any symptoms in her face, speech, or jaw.

Luke is Luke still. He enjoys terrorizing the new puppy "Tebow". He is always very active and shows incredible...

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One of my biggest concerns for my children is their ability to work and earn an income. I think it is important for them to be able to do something that they can be proud of that will allow them to take care of themselves financially. I am thinking about saving up for a custom lawn mower that Tyler can use with a joystick control. If we could start a lawn care business then someone could drive Tyler and the mower to the yards they would care for. Tyler could cut the grass and do things that he could be proud of and could earn him an income if I am not around one day. We could market it with ten percent going to Tyler’s Hope and hire other handicapped people. We could then market the mowers to handicapped people all over that would give them the same opportunities.  

 

It dawned on me while spending time with my mother that my father and mother would have had a good time in the retirement home where my mother is now if they had moved in together while my father was alive. I started to think about what I should plan for when Michelle and I get older and we need to simplify our lives. A retirement home would be nice but unfortunately that may not be an option for us if our kids are handicapped. We may need to take care of them and they may not be able to help care give for us. I need to make enough money to pay for Michelle and I and for each of the kids when we are not around. UNLESS, we find a cure.

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Our friend that went through the brain surgery to have a tumor removed is doing very well and is quickly recovering. It is amazing what those surgeons can do.

Samantha had a doctor’s appointment since the last time I wrote in the diary and the doctors want her to get Deep Brain stimulation surgery. They verified that the dystonia has shown up in her back and right now is pulling on her right side.  This is very scary for Sammy and for us. They want us to do it during the summer so that we do not need to do it while she is in school. We are going to try the new medication first and attempt to wait at least until next summer when she will be nine and the skull should be done growing.

The kids were at the Nickelodeon hotel this week with their mother and “Memaw” (grandmother). They had a blast because they didn’t need to travel very far to go to the pool or have things to do.   They did go to Universal Studios one day and had a bad experience. They were trying to load Tyler’s electric wheelchair at...

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