June 2005
Wow
I really missed the 6month mark for an update. There has been so much
that has happened since my last update,
but it becomes more difficult to sit down and write about it all,
anyway here goes!
The entire state of Florida saw it’s fill of hurricanes in the summer of 2004 and we did not escape the bad weather or the hurricanes. The panhandle of Florida was ravished with the fury of hurricane Ivan last August and it made for a mess in our hometown. Thankfully our home did not suffer much damage, so I was able to help out at the local shelter and for a couple of days worked with the National Guard passing out food, ice and water. There was a major shortage of gas and some of our neighbors are elderly so my Trailblazer and I made the daily errand runs for the neighborhood. I decided it was too hot in the house, no electricity for 18 days, so I camped out in the back yard. Two days after the hurricane hit I went out in a boat with a friend of mine to the I10 bridge it was amazing how mangled it was, but even worse was seeing the massive damage to peoples personal belongings, we took the pictures above. There is still alot of damage all around and some people are still with out homes we’re now into hurricane season again so let’s hope nothing else heads this way so we all have a chance to recover.
In November 2004 I received my hand cycle from the VA and February 23rd 2005 competed in my first marathon The Pensacola Marathon, I only did the half but my results were good. I did 13.1 miles in 1:14:40 so that qualified me for the New York Marathon, I submitted my application and as of last week I have been accepted, so it looks like I’ll be going to NY in November.
School is still going well and again I had wonderful grades. Only another 13 more credit hours and I will have my degree. I also took a second semester of Golf, which has turned out to be a lot of fun, individual sports in my opinion seem to be the best for someone with disabilities. There is a lot of pride in improving your skill but you don’t have the fear of letting teammates down for a poor performance.
I got back from another DAV Winter Sports Clinic in April and again it was a blast! (More information about the clinic and pictures from this year’s events below.) I tried snowboarding this time and I think I did pretty well. The instructors are coordinated through Challenge Aspen and they are amazing, if you want to try a new sport (like snowboarding) they will figure out a way to make it work! I also went snow mobiling, scuba diving and as always rock climbing. I was happy to hear others say that they saw a big improvement in me since the last year sometimes I don’t see improvements it’s nice to know they are happening. I won the Challenge Aspen’s Inspirational award at this year’s clinic. The instructors vote on the award and my Mom and I were called onto the stage at the closing ceremonies to accept a beautiful crystal eagle. The award also includes a vacation for two next ski season to ski (snowboard) and have individual lessons from the Challenge Aspen instructors. My Mom was in tears and I was so surprised, honored and excited for the first time I didn’t know what to say, so what did I say? “This clinic is SO GREAT, that’s all I have to say.” I was told afterwards I sounded a little like Forrest Gump!
A friend of mine "Billy" (pictured below) was home on leave from Iraq, it was so great to see him safe and sound. We got to hang out for a couple of days and he brought me a "Booty cap" from Iraq with my name embroidered on it in Arabic. Hopefully he'll be home in a few months for GOOD!
PHYSICAL : In January I started receiving Botox injections and went to physical therapy twice a week, the results have been remarkable. A lot of people don’t know that Botox is used medically for tone and spaticity, most people know of its cosmetic uses and since that’s where the money is that’s what gets advertised, but Botox blocks the neurological or temporarily deadens the hold on muscles, which in turn allows the muscle to relax and in my case gives me more control. My doctor chose to give me injections in very specific areas over the process of three months so we could see exactly what muscles would get the best affect from the treatments. I have completed three series and the results have been wonderful. It’s kind of a waiting game to see how long it lasts but expectations are about 4 to 6 months. I have much more flexibility and I have in fact found more co-ordination with my movement. I’m able to control my movements on the trampoline, which is a major feat. I’m able to tap my feet alternating left and right, something that was impossible before and when I’m holding on to something I can jump from foot to foot. I’ve even been able to run somewhat, it’s still not pretty and I still have to think about the movement a lot but I feel with time I will be able to run. My doctor and Mom think that since I have such good muscle control I won’t have to get the injections forever, the theory is that while the muscles are relaxed from the Botox I can work to have better control on the muscles that are not contracted and muscle memory will eventually take hold. I’ve now started my second rotation of Botox, so again we’ll see!
COGNITIVE : There seems to be a certain amount of complacency that happens with correcting cognitive problems. I guess it’s easier to ignore them and expect them to go away on their own, well at least that’s the point I’m to now or maybe it’s because I’m still extremely impulsive. Some people seem to be more accepting of the little quirky things I do so I have gotten lax about trying to correct them. I use humor quite often to make situations more comfortable, but in doing so I forget that everything is not funny and there are times I need to be more serious or as Mom says, act my age. Mom keeps pushing for change and she gets pretty upset when I don’t think before acting or reacting. She says I have the ability to do just that but in my mind it’s easier to not think and just have fun! I have to constantly remind myself that it had taken 22 years for me to develop into the person I was and only a minute for that person to be changed, it will take time and WORK to retrain my brain to be the person I was again, well maybe not the same person but one that is new and improved!
MY DAY: As I’ve said before I’m still going to school, then it’s Hooter’s for lunch and then beach time or whatever. I’ve met up with an old friend from high school, well we weren’t really friends in school because we had different interests but we have become friends now. He was a caregiver for a family member so he has a lot of compassion and doesn’t mind listening when I need to talk, besides that he likes to do a lot of outdoor things so we’ve gone canoeing, bike riding, and we’ve even gone bowling, that was a lot of laughs! School is over for now, well for me it is I took the summer off because I had been invited to go to Alaska fishing in August but that didn’t work out. I’m now waiting to find out if I’ve been accepted to go to Co to volunteer for an outdoor adventure brain injury camp. The camp is run by the BOEC and the BIA of CO coordinates the trips for adults with brain injuries. Because of my physical abilities and high function level instead of just being a participant I will possibly be a volunteer helping with those who have not yet been as lucky as I have with their recoveries. Keep your fingers crossed that I get to go, OK? For information about the BOEC there are links on the opening page.
EMOTIONAL: I deal everyday with the reality of my injury, and honestly it’s the cognitive issues that set me aside from other people and the most difficult to deal with. In my case having my memory intact and knowing whom I was before my injury seems to be the source of my emotional frustration. Looking in the mirror I see myself as I was, but I also have the reality of knowing that something is very different. One thing that has helped me recently is I finally understand that everyone has insecurities and is unsure about his or her future. Those things come with life in general and were not caused by my brain injury. The fact of the matter is, the more comfortable I am with my self the more secure I am about what the future holds for me. Soon it will be five years since my injury and at times it feels like yesterday, but most the time it feels like a lifetime ago that I was without a brain injury. I have my up’s and down’s but things are definitely getting better, I’ve finally realized that life is good and I plan on making the most of it.
The entire state of Florida saw it’s fill of hurricanes in the summer of 2004 and we did not escape the bad weather or the hurricanes. The panhandle of Florida was ravished with the fury of hurricane Ivan last August and it made for a mess in our hometown. Thankfully our home did not suffer much damage, so I was able to help out at the local shelter and for a couple of days worked with the National Guard passing out food, ice and water. There was a major shortage of gas and some of our neighbors are elderly so my Trailblazer and I made the daily errand runs for the neighborhood. I decided it was too hot in the house, no electricity for 18 days, so I camped out in the back yard. Two days after the hurricane hit I went out in a boat with a friend of mine to the I10 bridge it was amazing how mangled it was, but even worse was seeing the massive damage to peoples personal belongings, we took the pictures above. There is still alot of damage all around and some people are still with out homes we’re now into hurricane season again so let’s hope nothing else heads this way so we all have a chance to recover.
In November 2004 I received my hand cycle from the VA and February 23rd 2005 competed in my first marathon The Pensacola Marathon, I only did the half but my results were good. I did 13.1 miles in 1:14:40 so that qualified me for the New York Marathon, I submitted my application and as of last week I have been accepted, so it looks like I’ll be going to NY in November.
School is still going well and again I had wonderful grades. Only another 13 more credit hours and I will have my degree. I also took a second semester of Golf, which has turned out to be a lot of fun, individual sports in my opinion seem to be the best for someone with disabilities. There is a lot of pride in improving your skill but you don’t have the fear of letting teammates down for a poor performance.
I got back from another DAV Winter Sports Clinic in April and again it was a blast! (More information about the clinic and pictures from this year’s events below.) I tried snowboarding this time and I think I did pretty well. The instructors are coordinated through Challenge Aspen and they are amazing, if you want to try a new sport (like snowboarding) they will figure out a way to make it work! I also went snow mobiling, scuba diving and as always rock climbing. I was happy to hear others say that they saw a big improvement in me since the last year sometimes I don’t see improvements it’s nice to know they are happening. I won the Challenge Aspen’s Inspirational award at this year’s clinic. The instructors vote on the award and my Mom and I were called onto the stage at the closing ceremonies to accept a beautiful crystal eagle. The award also includes a vacation for two next ski season to ski (snowboard) and have individual lessons from the Challenge Aspen instructors. My Mom was in tears and I was so surprised, honored and excited for the first time I didn’t know what to say, so what did I say? “This clinic is SO GREAT, that’s all I have to say.” I was told afterwards I sounded a little like Forrest Gump!
A friend of mine "Billy" (pictured below) was home on leave from Iraq, it was so great to see him safe and sound. We got to hang out for a couple of days and he brought me a "Booty cap" from Iraq with my name embroidered on it in Arabic. Hopefully he'll be home in a few months for GOOD!
PHYSICAL : In January I started receiving Botox injections and went to physical therapy twice a week, the results have been remarkable. A lot of people don’t know that Botox is used medically for tone and spaticity, most people know of its cosmetic uses and since that’s where the money is that’s what gets advertised, but Botox blocks the neurological or temporarily deadens the hold on muscles, which in turn allows the muscle to relax and in my case gives me more control. My doctor chose to give me injections in very specific areas over the process of three months so we could see exactly what muscles would get the best affect from the treatments. I have completed three series and the results have been wonderful. It’s kind of a waiting game to see how long it lasts but expectations are about 4 to 6 months. I have much more flexibility and I have in fact found more co-ordination with my movement. I’m able to control my movements on the trampoline, which is a major feat. I’m able to tap my feet alternating left and right, something that was impossible before and when I’m holding on to something I can jump from foot to foot. I’ve even been able to run somewhat, it’s still not pretty and I still have to think about the movement a lot but I feel with time I will be able to run. My doctor and Mom think that since I have such good muscle control I won’t have to get the injections forever, the theory is that while the muscles are relaxed from the Botox I can work to have better control on the muscles that are not contracted and muscle memory will eventually take hold. I’ve now started my second rotation of Botox, so again we’ll see!
COGNITIVE : There seems to be a certain amount of complacency that happens with correcting cognitive problems. I guess it’s easier to ignore them and expect them to go away on their own, well at least that’s the point I’m to now or maybe it’s because I’m still extremely impulsive. Some people seem to be more accepting of the little quirky things I do so I have gotten lax about trying to correct them. I use humor quite often to make situations more comfortable, but in doing so I forget that everything is not funny and there are times I need to be more serious or as Mom says, act my age. Mom keeps pushing for change and she gets pretty upset when I don’t think before acting or reacting. She says I have the ability to do just that but in my mind it’s easier to not think and just have fun! I have to constantly remind myself that it had taken 22 years for me to develop into the person I was and only a minute for that person to be changed, it will take time and WORK to retrain my brain to be the person I was again, well maybe not the same person but one that is new and improved!
MY DAY: As I’ve said before I’m still going to school, then it’s Hooter’s for lunch and then beach time or whatever. I’ve met up with an old friend from high school, well we weren’t really friends in school because we had different interests but we have become friends now. He was a caregiver for a family member so he has a lot of compassion and doesn’t mind listening when I need to talk, besides that he likes to do a lot of outdoor things so we’ve gone canoeing, bike riding, and we’ve even gone bowling, that was a lot of laughs! School is over for now, well for me it is I took the summer off because I had been invited to go to Alaska fishing in August but that didn’t work out. I’m now waiting to find out if I’ve been accepted to go to Co to volunteer for an outdoor adventure brain injury camp. The camp is run by the BOEC and the BIA of CO coordinates the trips for adults with brain injuries. Because of my physical abilities and high function level instead of just being a participant I will possibly be a volunteer helping with those who have not yet been as lucky as I have with their recoveries. Keep your fingers crossed that I get to go, OK? For information about the BOEC there are links on the opening page.
EMOTIONAL: I deal everyday with the reality of my injury, and honestly it’s the cognitive issues that set me aside from other people and the most difficult to deal with. In my case having my memory intact and knowing whom I was before my injury seems to be the source of my emotional frustration. Looking in the mirror I see myself as I was, but I also have the reality of knowing that something is very different. One thing that has helped me recently is I finally understand that everyone has insecurities and is unsure about his or her future. Those things come with life in general and were not caused by my brain injury. The fact of the matter is, the more comfortable I am with my self the more secure I am about what the future holds for me. Soon it will be five years since my injury and at times it feels like yesterday, but most the time it feels like a lifetime ago that I was without a brain injury. I have my up’s and down’s but things are definitely getting better, I’ve finally realized that life is good and I plan on making the most of it.
Pictures & Additional Info
Pictures
and information about events
and places mentioned in this update.
Links are bold and those marked with ( * ) open another window and bring you outside of this site.
Links are bold and those marked with ( * ) open another window and bring you outside of this site.
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Information
About the DAV / VA Winter Sports Clinic Click Here ( * ) Media Presentations SNOWMASS 2005 Page1 Page2 Page3 Page4 |
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