Chris' Web

Here we go again, it’s time for an update, ok so it’s past time for the update! Thankfully we made through another season with no hurricanes!

In August I once again volunteered at the brain injury camp held at the BOEC. I had a wonderful time and as you can see from the picture, the views are spectacular in Colorado. When I got home I started getting ready for the upcoming races, I spent alot of time training and getting my cycle ready for the marathons.

Early in October my Mom went to Washington DC to a TBI summit, Hosted by Wounded Warrior Project. 13 families participated in discussing problems they had encounter since a loved one suffered a brain injury while serving in the Military. They were able to discuss with the “powers at be”, allot of things that need to be changed in the DoD and VA systems to better serve the troops suffering brain injuries. The families all met with Bob Woodruff and they were part of the round table discussion that aired on his special in February. She also met with my old Doctor from Tampa and they arranged for me to be re-evaluated in the Tampa VA in January.

The last week in October (2006) Mom and I hit the road heading to DC, we decided to drive this year since I was doing two marathons in a row, the Marine Corps Marathon on October 29th and the New York City Marathon on November 5th. It was nice to have the extra time, we got to do allot sightseeing and visiting in both DC and NYC. While we were in DC we visited some of the wounded soldiers at Walter Reed and when we got to NY Mom and I met up with Sue for dinner and a stroll in Times Square. Sue is one of the instructors who volunteers at the DAV Winter Sports Clinic, she’s a great instructor but even more than that, she is a great friend. After my mom had met with Bob Woodruff in DC I was invited to also meet him and have a tour of the ABC studios. It’s kind of funny how two guys who have never met before can feel like they immediately understand each other, I guess TBI’s have a way of creating and odd bond. After Mom and I had a tour of the ABC News Room and studio, we took a long walk through Central Park and back to the Soldiers, Sailors, Marines and Airmen’s club, where the Achilles Team was staying. Yep it was a LONG walk, around 15 city blocks! I really love doing the NYC marathon, not just because of the race but it’s an amazing city, and I also get to see family and friends who live in NY. I haven’t seen my cousin in about 5 years so Mom and I drove out to Long Island to visit with my cousin, Laura, her husband and their two children, who I had never met before. On Race day, Sue met up with my mom on the course, the two of them rushed around the city on the subway to catch a glance of me passing by. The two of them then met up with my Aunt and Uncle in Central Park to see the finish. The crowds in New York are massive, but it adds something special to have people you love cheering you on. Now that I’m part of the “Freedom Team” we travel and stay with the whole Achilles Team. Achilles is an amazing organization and they also have a wonderful group of dedicated employees and volunteers. Mary Bryant is the director of the Freedom Team and Captain Dan Daily (FDNY, retired) coordinates the volunteers from different firehouses in NYC. This is the best group of guys you could ever meet and I really appreciate everything the FDNY does for us. I also appreciate the NYPD, especially one officer who got me heading back in the right direction when I got lost walking to the store. My mom’s not real happy with them though they gave her a NYC souvenir she didn’t want, a $120.00 PARKING TICKET!

After getting a few weeks rest at home, we headed down to Palm Beach to meet up with the rest of the Freedom Team for the Palm Beach Marathon held on December 3rd. It was a GREAT weekend and a wonderful race! The team was also hosted to some pretty impressive events; a very nice party at a private home in Palm Beach, Donald Trump invited us to lunch at Mar-a-Lago, and the third was hosted by a private organization, who offered to sponsor some of the freedom team members to race internationally. Needless to say it’s not just about the racing anymore; it’s about the camaraderie, meeting new friends, seeing old friends, and being offered a chance to do some pretty spectacular things. Marathon's slideshow of the three races.

A couple of months ago, in January (2007), I was admitted for two weeks for re-evaluation in the James A Haley VA in Tampa. I spent the two weeks going to PT, OT, Cognitive-Speech, Recreational and Vocational therapies. It was very productive and I gained more knowledge of what I can do to improve and recover even more. In the pictures above you’ll see me with some of the new friends I met in Tampa and some of the therapists. There’s one picture with my arm around the neck of a therapist, that’s Karyn, read the “COGNITIVE” section below, and you’ll understand the pose. As part of the Vocational therapy I was told about a new program called CWT (Compensated Work Therapy) that is now being offered to TBI survivors. The whole idea of this new program is to put veterans who have suffered brain injuries into a work environment with the necessary support for them to succeed. Since I had gotten my AS degree last May in Sports & Recreational Technology, I told them that my desire was to work in the recreation field. The CWT coordinator, Jayne, researched different possibilities in my hometown area and then she and a nurse practitioner came up to Pensacola, from Tampa, to help get everything coordinated with the local VA. After a meeting with the department heads of the HLES department at University of West Florida it was obvious that’s where I wanted to work. I’ve also decided to continue my education I will be pursuing a Bachelors Degree in Physical Education.

Earlier this month I had a speaking engagement, I spoke to about 350 high school students at the Anchor Club’s annual convention. The Anchor Club’s offer ways for students to serve their communities through volunteering. They also work with their sponsoring Pilot Club for public awareness and hands on service to people with brain related disorders. It was my desire to show them how difficult it is living with a brain injury and suggest ways they could help other TBI survivors.

PHYSICAL : I had honestly thought I had peaked on my physical abilities, but after the re-evaluation in Tampa, Barb, the physical therapist, thinks I can still improve. Although I’m involved in sports and physically I’m pretty active, I’m not always using the right muscles. Balance and lack of coordination are still the main problems stopping me from running and Barb wrote some specific exercises to help me with those. We don’t currently have any Physical Therapists at the local VA clinic, so now as part of my VA rehab plan I will work with a personal trainer 2-3 days a week in the gym. I’m still getting Botox injections and it’s now apparent that they not only work temporarily, they can permanently help decrease tone. I get injections about every 4 months, they relax the tone and allow my weakened muscles to get stronger and overcome the neurological hold. My last trip to the doctor he was able to reduce the amount I receive by 300 units! That basically means I get “poked” less! The Chiropractic therapies that I received last summer, worked very well. I went 3 days a week for 12 weeks and the final x-rays showed a perfect alignment of my spine and neck. Mom says the biggest noticeable difference is I look a lot more natural when I walk, no longer like there’s wind in my face! For those of you who don’t understand what I’m talking about; some people who suffer a brain injury walk stiff and lead with their hips and shoulders, which makes them look like their in a windstorm. We always thought it had something to do with my balance, but after the doctors at Suncoast showed my mom the x-rays it made more sense, that alignment was part of the problem. Mom got kind of angry that no one had ever thought to take full x-rays of my neck and spine, before now. She told them that when I fell, well really when I landed, the side of my head ended up hitting the ground first, raised on a ledge higher than where my body impacted. So I guess it makes sense that my neck would have suffered some injury.

COGNITIVE : By now everyone knows that I’ve been tired of hearing about cognitive problems. Well during my re-evaluation in Tampa this proved to be my biggest frustration and showed everyone how quickly I can blow up because of it. Did you know that by pushing someone with a brain injury to the limits of their frustration you can actually find out how many swear words there are in the English language? Well, just ask Karyn! Karyn was my cognitive speech therapist when I was there in 2000 and she worked with me again this time. Although she was very proud of how far I have come she was quick to point out the things I need to work on. Just what I needed was someone else telling me how abnormal I am! Oh by the way, she wasn’t as tactful as my mom is, she uses the phrase “That’s not normal”. Remember in my last update I asked the questions; How do you stop being immature or impulsive? How do you learn modesty, or embarrassment? Or better yet how do you self monitor and keep your self “in check” so you don’t get embarrassed or embarrass others? Well the answer is you have a therapist follow you around and remind you constantly! Yea, great huh? Honestly Karyn is a wonderful therapist and although I hated hearing it she did give me cues and strategies to help me self correct my odd behaviors. Karyn also ordered me a PDA that has a GPS system, so with the help of continued speech therapy I’m learning how to become more organized and the GPS might help me from getting lost anymore. I’m continuing speech therapy at the local VA and Karyn is in touch with my VA therapist, together they are giving me drills (homework) to help me have more logical reasoning and flexible thinking. Let’s hope this works! Some other things that were addressed by the doctors and therapists in Tampa were my anxiety, frustration levels, and my poor impulse control. They thought that those things may be causing some of my problems and making it difficult for me to just relax without feeling bored. Although I have not wanted to be over medicated, we all agreed that it was time to “try” something, and I was put on a mild dose of a SSRI medication. After being on this medication for just a few weeks I have noticed some changes. The medication has reduced my anxiety and my impulsive behaviors. I do seem more relaxed without feeling like I always have to be moving or doing something, a matter of fact maybe too much! Medications of this type can make you pretty tired and that’s one thing I didn’t need, but we’ll see how it works for the long term.

MY DAY: Currently I go to speech therapy on Tuesday mornings and I volunteer at UWF’s Movement Academy on Tuesday and Thursday afternoons. Starting in May, I will be a registered student and working for the program through the summer. The Movement Academy is a community program for children 4-17 years old that are home schooled. The academy provides classes in sports, recreation, and games. I’m pared up with a graduate student and we teach approximately 15, 4 and 5 year olds. I’m extremely tired when I get home and it’s no wonder. Do you have any idea how much energy 4 and 5 year olds have? Sure wish they sold that stuff in bottles. I will also be starting my physical training very soon, and I plan on doing that on a Mondays and Wednesdays, which will make for a pretty full week. On my weekends I’m getting my garden ready. I had a pretty nice vegetable garden last year but I wanted to expand the area this year so I’ve just tilled and added another 10’x10’ area. Maybe now the squash won’t take up the whole garden. I hope to get it all planted before leaving for the DAV Winter Sports clinic the end of this month.

EMOTIONAL: There’s allot to be said for volunteering, it’s awesome to feel productive and I have fun while I’m doing it. I’ve met allot of the students and they are very protective of the program so everyone works together to help each other succeed. But honestly I think the best part is being around all the kids, they arrive with big smiling faces and ready to have fun and I really like having fun with them.

I leave on Friday, March 30th to go to the DAV Winter Sports Clinic again, so right now I’m very excited! I always have a blast at the clinic but this year a couple new friends, I met in Tampa, will be going. Lee, John and I really hit it off and I’m looking forward to showing them around Snowmass. Check back soon so you can see the pictures~

Pictures and information about events and places mentioned in this update.
Links are bold and those marked with ( * ) open in a new window and bring you outside of this site.