Progressional Diary

April 29th, 2009

by Anonymous on Wednesday, April 29, 2009 1:00 AM
The secret Pal hit again yesterday. Each of the kids got a flameless candle nightlight that projects cool images. Last night was the first night in a long long time that all of our kids were able to sleep upstairs in their rooms. Normally they sleep on the couchs, beanbags, and downstairs bedroom together. Luke has been sleeping with Michelle and I in our bed with us when he allows us to have some room. This was a big step. They were able to do this because Samantha can walk some with her new brace and Tyler has been able to walk more. Some of our worry has always been Tyler's ability to make the bathroom or call for help(can't yell or talk well). Tyler is older and it is not as scary for either of us because we know he will take care of whatever arises at night now.

Tyler has been going to school without using his wheelchair. I am sure that it is difficult for him and he gets tired by the end of the day.

Samantha went to school today and never used her wheelchair. She was able to walk all day with...

April 21st, 2009 Dad's birthday

by Anonymous on Tuesday, April 21, 2009 1:00 AM
Today is going to be different. Normally we celebratemy father's birthday today. He wasn't big on presents so if we were near each other we would play golf, if we were not, he would play golf. My father was not happy about thekids having dystona and stressed about it. I know if he has a say from above that he has it cured.

Tyler was sick yesterday so he didn't go to school. He is feeling better this morning so I ams ure he wil go. Ty does not like to miss school. It is very difficult for him to get caught back up. Tyler's left hand has improved. His fingers stay straight now where before they would curl backwards and show more seperation. He goes to programming every six weeks now instead of four weeks. Sometime during the fifth week his dystonia starts to get worse so it makes it easier to see the programming when he goes to the office on the sixth week. His tube has been itching him. It is time to replace it but noone like to do it so he puts it off.

Samantha gets her brace on Friday and she is...

April 19th, 2009

by Anonymous on Sunday, April 19, 2009 1:00 AM
Michelle and I went to Chapel Hill for the Tyler's Hope for s Dystonia Cure wine tasting event. We saw many of our friends and had a good weekend by ourselves. My mother-in-law watched the kids so we could go up this weekend. I cannot stress the importance of good friends when things are tough. Our friends and supporters are very encouraging and it amazes me how supportive they continue to be. The event was a success because we not only raised money for research but we also were able to expose new people and a new community to Dystonia and Tyler's Hope.

Tyler is doing well and several people have commented how he is growing up. Tyler continues to be able to walk more than what he used to be able to and his features make him look like he is getting older. I don't like it but it is also fun to watch him grow. I would like to find the cure while he is still in school.

Samantha is progressing and we are contemplating starting her on Baclofen. Her legs and ankles are really bad and she is looking twisted...

April 13th, 2009

by Anonymous on Monday, April 13, 2009 1:00 AM

April 1st, 2009

by Anonymous on Tuesday, April 07, 2009 1:00 AM

      I grew up with four older siblings and do not remember fighting with them as much as Tyler, Samantha, and Luke fight now. It is very clear that they love each other and will help each other but I truly understand the phrase "fighting like brothers and sisters" now.

      The foundation is making great progress through mainly the efforts of Anne Soeder in bringing together an international patient driven registry. The researchers and some foundations are behind this effort as well. Emily Goldstein celebrated her 12th birthday recently and has raised a good amount of money for Dystonia research through their Tyler's Hope support group in California. We continue to get checks and other donations in from their group.

      A national magazine called PainPathways recently ran a story about Dystonia and Tyler's Hope. It was well written and creates a lot of awareness. I will be posting the article on the site very soon.

      Tyler has been doing great. This week he has had more pain...

March 13th, 2009

by Anonymous on Tuesday, April 07, 2009 1:00 AM
      The Summit has ended and it was huge success. A big thank you goes to Medtronic for their sponsorship of this year’s Summit and to MT Chophouse restaurant, AP Limo, Fresco’s restaurant, and Coke. Jen Reichwage, the Tyler’s Hope Center coordinator organized this year’s Summit and deserves credit for a lot of its success. I believe we will see some breakthroughs in research this year.

      We are moving forward with the international registry and have garnished the support of other groups such as the DMRF. The registry will soon be offered at doctor’s offices, clinics, and on line. It is named DIPR for Dystonia International Patient Registry but I liked the play on words with the star from Tyler’s Hope and this being named the "dipper."

      Tyler had botox last week and seems to be moving his left wrist better. He had FCATs all week and was able to finish them in a timely manner. He takes the science FCAT next week. He is reading his book right now and he will be going to the Gator Nationals...