Progessional Diary of Tyler Staab

May 11th, 2012

Fri, 11 May 2012 05:00:00 GMT

Tyler recently had several doctors appointments and is taking an agressive approach to trying to get his left arm and wrist down. The fear is that it is locked and may take surgery to get it straight again. Tyler got a lot of botox in his wrist and some in his arm. Today Tyler woke up and was excited about how relaxed his hand was. He tried to straighten it all the way and feels like he may have hurt it. He got a little too excited but it is good to see. Tyler will have serial casting in two weeks for that wrist. They believe that his arm raises above his head as overflow from his wrist issues and is action induced.

Samantha still works hard in physical therapy and went to Epcot with St. Michelle on a school field trip yesterday. Samantha works hard to try and learn volleyball. Samantha is very helpful around the house. She goes to all of Luke's baseball games and supports her little brother. She just finished her Math placement tests and will be going into 6th grade next year.

Luke is doing well and is not showing signs of Dystinia now. He is playing baseball and just got finished reading to me from Tim Tebow's book.

Happy Mother's Day to all of the Moms.

March 24th, 2012

Sat, 24 Mar 2012 05:00:00 GMT

It seems to be a very busy time of year. We just held the Tyler's Hope Summit in Gainesville Florida and many top researchers showed up to discuss the new ways and approaches to science of finding a cure. It was very motivating for the other scientists to talk about things and encourage each other. We have funded over $325,000 so far this year into science that does not include the other $200,000 we had already earmarked for the Li laboratories at UF. Two of the researchers that were funded at the Think Tank last year said that their results were so go that they have received much larger funding from NIH this year to continue their projects and bring them to clinical trial. I will post these and other projects under the Research section of the Tyler's Hope site soon.

Dystonia updates:

Tyler: He continues to have problems with his left arm and wrist. The arm stay pulled into the air above his head. His wrist may be contracted into a fixed position as it no longer is able to be straightened. This week he has been trying to tape his muscles up near his shoulder on that left side and try to activate other muscles that will help him keep that arm down. He continues to make small weight gains which I think will pay huge dividends for him health wise in the next year.

Samantha: Samantha's foot/ankle starts to turn in and make walking much more difficult but she works hard in PT and is able to get things working again. It is a continuous struggle to stay ahead of that foot but she is doing it. She works really hard at PT and it seems to help her.

Luke: I am fearful to even write this but he is not showing any signs of dystonia at this point. He started baseball and is learning to hit off of the pitching machine. He stays VERY active. Luke told me when I expressed that I was worn out one night, "Dad, do you know why I have soo much energy all of the time? I do things that are fun for me. I jump rope or shoot hoops and that gives me more energy. You should do more things like a kid and you will have more energy." That is pretty profound for a seven year old.

Remember that as bad as things seem at times you should enjoy everything you can and look at things as opportunities for making fun times even when they seem hard to have. This is sage advice from a seven year old.

February 25th, 2012

Sat, 25 Feb 2012 05:00:00 GMT

Today I had a UF foundation board of directors meeting and was given the opportunity to share the story about Tyler's Hope and dystonia. I am encourged whenever I find people that are not aware of dystonia. Awareness is huge in the fight to find a cure. With more awareness there is more researchers and doctors available for the fight as well as better diagnosis. There is so much to tell and share about the foundation but this diary wa sdesigned to tell the struggles and accomplishments of my children and our family. I hear from peopl all of the time when it is not updated.

Saint Michelle and I celebrated 17 years of marriage recently. I love my wife very much but I feel a sense of accomplishment or pride in being married for 17 years and dealing with some crazy things together during that time.

Tyler has a few very good friends that make his life easier. Tyler gets discouraged sometimes trying to find things that he can do wth his friends and to get him out of the house. Tyler's left arm i still one of his largest problems with it constantly pulling and standing straight up in the air. His speach is not good and hard to understand and I can tell that he gets frustrated when we cannot understand him. I imagine it is like having your son on the other side of a class wall where you cannot hear him but want to discuss things all of the time. Tyler currently has a 5.0 gpa on a 4.0 scale. He just received his letter of acceptance to the high school program of his choice and it made all of us very happy. He got into all of the programs he wanted to.

Samantha has had a few more difficulties with her legs and isnt walking as easily as she was a month ago. She continues to work very hard towards specific physical goals she sets and now she wants to play volleyball. I am sure she will be very good because she is stubborn in a good way and will acoomplish anything she tries to. Samantha applied to two middleschool programs that she wanted and has heard back from one of them that she was accepted.

Luke continues to not have symptoms. He is soooo good with his borther and sister and their handicap and I see that he is the same way with people he does not know. What a great perspective on life he has. His basketball skills are growing. He scored 22 points in his game last week and scored 14 points in his game today to end his season. He got a mohawk haircut. One of my good friends mentioned that Luke will never lack confidence and I think that is pretty accurate.

February 1st, 2012

Wed, 01 Feb 2012 05:00:00 GMT

Report cards came out and Tyler, Luke, and Samantha have straight As in school.

Tyler is recovering well from his surgery and appears to be infection free. Tomorrow he has the regional science fair at Santa Fe College. He is in the botany division. His dystonia is still bad with his left arm continuously pulling up into the air. The docs are trying hard to find a setting that can help this but have not found it yet. He is applying to different high schools next year and waiting for his acceptance letters.

Samantha is applying to middle schools and waiting for her letters. She now has a new ambition of playing middle school volleyball. Anyone else I would have thought this would be impossible but with Samantha I believe she can do it. She has started to train with Merideth again and is excited about having the new goal. Her feet still trun some and her core isnt as strong as before but we are hoping to find her optimal programming also.

Luke is doing well in basketball and loves a new electric scooter that was given to him. He is not showing any symptoms of dystonia. He likes mathematics. He does not eat well but that could be a combination of teeth he just got fixed and no appetite. He is skinny and very very active. He is a sweet boy that has a great sense of humor.

Saint Michelle cut her hair and is learning lots of new things as she helps each of the kids with their homework each day. We have had the opportunity to go on several dates to differnet fund raisers with our friends while Tyler stayed home with Samantha and Luke. All of us went to a cabin in North Carolina for a few days of relaxation.

January 7th, 2012

Sat, 07 Jan 2012 05:00:00 GMT

Our household is very interesting right now. The kids continue to do well in school but we are attempting to get better results from Tyler and Samantha’s DBS surgeries by modifying their programming.

Tyler's left arm continues to be a problem and he has some facial dystonia with some pulling and some in his eyes. The very good sign is that Tyler seems to be putting on some weight. Through a combination of increased shakes and increased appetite which allows him to eat more during the daytime, he has had some weight gains. Unfortunately two days ago Tyler started having some cognitive issues at school with some loss of memory. When he came home we noticed that he had something that looked like an infection on top of his head and it was very sensitive. Michelle took Tyler into the hospital where the docs met them and agreed to get a CT scan done right away. The CT look good because there was no evidence of infection in the brain but there is an infection near the cap that holds the electrode onto the skull. This infection was eating away at the skin between the scalp and the skull. It was also inflamed and painful. Tyler came home with a supply of antibiotics and anti-inflammatory meds. He will go have surgery this Friday to clean up the skin and the cap area and hopefully get the infection under control. The cognitive issues we believe may have been caused by a different issue and possibly having three leads turned on at once with some overflow that causes different strange emotions and memory issues. The idea is to turn off the lead we just turned on and see if it eliminates the problem.

Samantha also had a rough week. She has been falling more as we chase her progression with programming of the dbs. She fell and banged her head pretty good on the marble counter top this week.

Our dog decided to shake the cartilage from his ears this week as well. He had to have surgery and it happened to be on the day that Tyler was taken to the hospital. Of course this was also traumatic for the kids who were crying and we needed to pick the dog up from the vet and keep a close eye on him. It was a really good financial week with thousands out of pocket for medical and veterinary expenses. We are still paying for the last dbs surgery. We are fortunate enough to make a good living but it is tough for us so I cannot image what other families do with children suffering from dystonia.

Lastly but not least, Luke started basketball. He played really well scoring five times in the first half. He came home and drew different lines on our court to practice for next week.

December 12th, 2011

Mon, 12 Dec 2011 05:00:00 GMT

We had an inspiring weekend. I have spent much of the day following up on Tyler's Hope things to make the moeny work for us and find this cure.

We spent most of the weekend planning for the Season of Hope Run and competing in it. It was one of the most fun events I have participated in. The atmosphere was electric with people in great moods. We started the race with a moment of silence for a good friend (Harold Monk) that suddenly passed away at a young age. There were over 340 runners including participants that had dystonia, parkinson's disease and other movement disorders. It was a great showing of support and inspiration. Three of the runners had DBS surgery and completed the 5k. One of those people was our 10 year old Samantha. Sammy had a goal to complete the 5k but as she pushed through her physical therapy she made he new goal to beat 1 hour and 20 minutes. Sammy finished the race in 1:09. Her determination was inspiring. Her brothers were very supportive and both ran to greet while so they could cheer her across the finish line. Tyler took pictures and encourgaed everyone. Luke ran the 5k then came back to walk with his sister.

Michelle text me earlier to tell me that al of the teachers at Samantha's school are wearing their Team Samantha shirts today.

Yesterday Luke's right foot looked like it was truning in when he walked and he would skip a lot. I am concerned that he is showing something after the fatigue of the race but he said he was doing it on purpose. Keep him in your prayers please.

Thank you race director Leslie Okun.

December 2nd 2011

Fri, 02 Dec 2011 05:00:00 GMT

Yesterday was a great day in our household. Luke turned 7 years old and had a wonderful birthday. The secret Pal struck again and continues to have an impact on my children's lives that will never be fully appreciated by everyone. Thank You secret pal.

Seven years old is a milestone in our house because of Samantha and Tyler both showing symptoms when they turned 7. I did not sleep much at all this week and I am sure it was because I am worried about Luke. Saint Michelle has been stressed also and we both pretend like that can’t be it. Luke was able to build a Lego boat all by himself yesterday which made me think his dexterity is good. Luke got basketball clothes for his birthday and starts basketball in a week or so.

Tyler started the day at clinic and was very excited to find out he gained another four lbs since he was last weighed. He also scored the highest score in school on his Spanish test (122) that he was worried about.

Samantha spent some time preparing in PT for the Season of Hope race on December 10^th and had a really good work out.

I received two calls this week from people that I know that had someone in their family diagnosed with either Dystonia or Parkinson’s disease and wanted to be seen at the University of Florida’s Movement Disorder Center, home of the Tyler’s Hope Center of Excellence. Although it is unfortunate that these things happen, I was happy that we could help them.

November 22nd, 2011

Tue, 22 Nov 2011 05:00:00 GMT

Two days before Thanksgiving and there is a lot to be thankful for. For me, family is the top thing followed closely by great friends. I miss my father and my mother but I feel very strong because of the love and strength they gave me while I was growing up. You already know about Saint Michelle and my fantastic kids. My friends I cannot be more grateful for with their compassion for Tyler's Hope and how they make our lives fun.

Now for the update on the kids so that people with dystonia can understand the fluctuation of emotions and daily battles that are fought.

Tyler continues to do very well with his studies and last week he earned 1^st place again in the science fair in the botany division with over 350 kids competing and 90 in botany. Tyler will go to the regionals to compete. He will be fitted for a brace/splint for his left wrist and arm soon. He is trying everything he can to get some improvements on his left side. He has had a lot of pulling on his left eye and face lately and it is frustrating and painful at times. He is going to try some different programming settings including turning off and on a lead. Dystonia Sucks!

Samantha continues to impress and work very hard in physical therapy in preparation for her 5k Season of Hope run. Michelle is having some t shirts made up for those of us who are going to run in honor of Samantha at the race. She is going to take a break from her PT after the race is over.

Luke has his 7^th birthday December 1^st. This has been a date we have been watching very closely because we noticed symptoms with both Tyler and Sam when they turned 7. Samantha showed on her birthday. Right now Luke is doing good and showing no signs of dystonia. He starts basketball on December 5^th. Luke has learned how to text so we spend most of our weekends and nights responding to his texts.

Happy Thanksgiving.

November 4th, 2011

Fri, 04 Nov 2011 05:00:00 GMT

Tyler's birthday was two days ago. It is a reminder of the urgency needed in raising money to fund the research. One tear older is one year more that we could have cured him and others. Last night he had five boys sleep over for a party. I am typing this at 5:30 am and they are still not in bed. It sounds as if they have a demolition ball upstairs. Tyler's dystonia has shown up in the left side of his face some. I believe it is the newer programmings but his eye involuntarily closes and he grimaces from time to time. We will try and coorect this.

Samantha had a few days there where her foot was turning in more causing her to fall when she has been trying to walk a lot more. She had a good time and got lots of candy on Halloween.

Luke has started praticing his basketball again. He was a ninja, captain america, and a cowboy this week for Halloween. He broke it down on the dance floor for everyone to see at the Halloween party. Luke loves to dance. Luke turns seven years old on December 1st. This day is important because both Tyler and Samantha showed symptoms when they were seven. Samantha showed the first real signs on her seventh birthday. We are watching very closely at all of his movements but he is showing no symptoms right now.

The secret pal struck again this week. The Pal does not miss a beat. First the Pal showed up for Halloween then again on Tyler's birthday. I know the Pal reads the diary so Thank you Thank you Thank you.

October 18th, 2011 -The Wedding

Tue, 18 Oct 2011 05:00:00 GMT

We were able to take all three kids with us this past weekend to Boston and Newport RI.

As a reminder for those who do not have handicapped children or are newly diagnosed, airports and airplanes are not the easiest things to navigate with Dystonia. As always Saint Michelle called ahead and got some wheelchairs reserved for the airports and that helps. You cannot use the escalators or stairs with wheelchairs. Our layover in Atlanta was 35 minutes and we had to travel between terminals so waiting on the elevators is frustrating. We did make our connecting flight though. Both Tyler and Samantha have adjusted to the posturing that dystonia makes them take so they were able to comfortably fly to our destination. The last trip we were on, sitting still in the seats was an issue because of all of the dystonic movements. Because of the extra luggage, and walker (we left one of the wheelchairs at home) we needed to rent an SUV to carry everyone around. Samantha started with a head cold and came home with what is now bronchitis.

We arrived in Boston Friday night and went to our hotel in Cambridge where we caught up with my older sister and the kid’s cousin, Nick. We had dinner together then went to sleep. The next day, Saint Michelle and Samantha drove over to Newport with my sister Barb while Tyler, Luke, Nick and I took the famous Duck tour with my cousin Dave and Lisa who had flown in from Minneapolis. The Duck tour is awesome and I highly recommend it. We ran out of time in Boston so we were not able to see Harvard Square or Fenway Park. We will be back. Tyler did get to see Mass General (where they found the DYT1 gene for Dystonia and where we have funded a lot of research for the cure) as well as M.I.T. That area is full of the brightest minds on the planet.

We left for Newport after the duck tour ended. For the sake of typing all of the details and making the story too long to read, I will say that the Oceancliff Resort is beautiful. The wedding was unbelievable. A lot of my family was able to make it including cousins and aunt and uncle. The kids were each in the wedding and looked great in their tuxes and Sammy in her dress.

Jordan and Ashley are two of the greatest people you could ever meet and I was very excited about their wedding day. They have been instrumental in our battle against dystonia and raising funds/awareness for the cause. This weekend was no exception. First they asked everyone at the dinner tables to take a dollar out and one person to take a larger dollar out. The person at the table with the largest dollar was the banker and kept all of the money from the table. They then played music and passed the bills around until the music stopped and that person was asked to take all of the money from the table over to Tyler as a donation to Tyler's Hope. If that wasn't enough, they purchased 200 t shirts with Tyler's Hope and Dystonia Sucks! on them and gave the to all of the guests. All of the guests put the t shirts on and wore them while dancing and celebrating. I promise you that as I type this I am teary eyed and proud of them thinking about this cause on a day when we were celebrating their marriage. Good people!