For those of you like me (Kara), who still aren't on Facebook...I wanted to let you know something Leah & Doug are doing for Brian over on Causes this week. Here's a summary of what they sent out:
As some of you may know, this Tuesday, December 14th marks the two-year point of the near-fatal accident. In a show of support and specifically to help offset some of the expense of Brian's upcoming Shepherd visit, we're making this Tuesday, December 14th "$14 on the 14th." Please consider making a donation of $14 to NTAF on Tuesday (though any amount helps!) to make December 14th a day of encouragement & looking ahead for him rather than one of discouragement & looking behind.
I think this is such a neat idea! Thanks so much to those of you who have already made a show of support in this.
So, for those of you that haven't, please consider donating tomorrow, or anytime this week, in a rally of support for Brian know as "$14 on the 14th!"
(Also, in case you missed it, please be sure to check out the video on Brian's last post. It's the most exciting mark of his progress yet. Can't wait to see what God will do for him at Shepherd in January!)
Monday, December 13, 2010
Saturday, December 11, 2010
Brian: December Update & Video
This month marks the two year date since my accident. My accident occurred early in the morning on December 14th of 2008. I was putting some appointments in my phone for the month of December the other day and noticed that I had the 14th labeled as “Day I Ruined Life.” I believe I set that reminder a few days before this date last year. I know that sounds bad but in reality I actually do not put a whole lot of emphasis on this date. I do not remember much about that day, which is common with traumatic accidents like mine. I may think and reflect on things a little more on that day but that is about it.
Really though, it is just amazing how so much has changed in my life for now since my accident. It changes how I drive, how I get gas, how I bring in groceries, check the mail and, well, pretty much just everything. Sometimes I cannot help but wonder where things would be with friendships, relationships, employment and many other things I had or did pre-accident. While the majority of this stuff is negative I can say that it has changed me some for the better. I think I have become more compassionate and have become more appreciative of the good things I do have in life. The help and support I have received also has given me a desire to really want to help others. I have even thought if I can just get back on my feet how much going through this has taught me many things.
In the hospital following the accident, I vaguely remember my father and me agreeing to give two years to try to devote 100% of our efforts to my physical recovery. Like I have said before, I often remind myself that it was not until October 25, 2009 when I was out of the hospital and finally over secondary issues that prevented me from starting recovery attempts, this two-year date of recovery efforts begins.
I do remember one of the doctors telling me before I left the hospital that an injury like mine gave me only a 5% chance of ever recovering to walk again. I admit this was tough to hear and to this day I will never understand why some in the medical field are so quick to tell SCI patients that, as a lot of times it seems to make people think that recovery is not possible to the point they don't even explore the current therapy options available.
I really have wondered why most of the staff at the hospital tried to get me to just accept and embrace life in a wheelchair. I thought, what good does that do anyone? I understand not giving people unrealistic expectations but why put a quantitative value on it, like 5%? I remember even thinking that night about what the doctor said and I immediately was able to make that 5% number jump up. I thought to how I was much younger then a lot of the other SCI patients in the hospital wing, how my physical shape before the accident played in my favor, and that my background in athletics would help in my efforts. I also can be pretty confident in some things regardless of what others may say. I tried quickly and my best to refuse to believe this statistic. As time has gone by, however, it has become clear that the biggest advantage I have in this fight is the financial support I have been blessed to receive. I had no idea how expensive recovery efforts are and without the financial support of my father and so many of you, I would not have much of a chance. As always, thank you.
In some ways, I am surprised and disappointed that I am not further along in my recovery. Admittedly, part of that is probably because I have some unrealistic expectations and I am just used to my body being able to do most things easily. I remember when the only physical things I used to worry about were jumping higher or running faster, not simply being able to stand up or take a few steps.
And although recovery is very slow, already I have made gains that have and would surprise most of my original doctors and therapists. The classification of my injury has even changed for the better and current treating physicians and therapists do expect me to continue making further gains. So, I have to continue to remain patient, stick with it, and see what I can do with things.
I start therapy at the Shepherd Center in Atlanta the third week of January. Most of the things you read about Shepherd describe it as such a great and amazing place. I am excited about starting there but pretty nervous about it as well--nervous because I have been waiting a long time to start and it is, by far, the most expensive thing I have done. The funds we have built up have started to dwindle and my stay in Atlanta will really deplete this hard. I hope my time there is worth it.
Along those lines, I have attached another video of therapy I have done in Charlotte. I like this video because it shows me doing something that appears pretty normal, riding an exercise/spin bike. I will say that the resistance is really low and the pedaling is initiated by my hip flexors but some people may be surprised by what I can do...
Really though, it is just amazing how so much has changed in my life for now since my accident. It changes how I drive, how I get gas, how I bring in groceries, check the mail and, well, pretty much just everything. Sometimes I cannot help but wonder where things would be with friendships, relationships, employment and many other things I had or did pre-accident. While the majority of this stuff is negative I can say that it has changed me some for the better. I think I have become more compassionate and have become more appreciative of the good things I do have in life. The help and support I have received also has given me a desire to really want to help others. I have even thought if I can just get back on my feet how much going through this has taught me many things.
In the hospital following the accident, I vaguely remember my father and me agreeing to give two years to try to devote 100% of our efforts to my physical recovery. Like I have said before, I often remind myself that it was not until October 25, 2009 when I was out of the hospital and finally over secondary issues that prevented me from starting recovery attempts, this two-year date of recovery efforts begins.
I do remember one of the doctors telling me before I left the hospital that an injury like mine gave me only a 5% chance of ever recovering to walk again. I admit this was tough to hear and to this day I will never understand why some in the medical field are so quick to tell SCI patients that, as a lot of times it seems to make people think that recovery is not possible to the point they don't even explore the current therapy options available.
I really have wondered why most of the staff at the hospital tried to get me to just accept and embrace life in a wheelchair. I thought, what good does that do anyone? I understand not giving people unrealistic expectations but why put a quantitative value on it, like 5%? I remember even thinking that night about what the doctor said and I immediately was able to make that 5% number jump up. I thought to how I was much younger then a lot of the other SCI patients in the hospital wing, how my physical shape before the accident played in my favor, and that my background in athletics would help in my efforts. I also can be pretty confident in some things regardless of what others may say. I tried quickly and my best to refuse to believe this statistic. As time has gone by, however, it has become clear that the biggest advantage I have in this fight is the financial support I have been blessed to receive. I had no idea how expensive recovery efforts are and without the financial support of my father and so many of you, I would not have much of a chance. As always, thank you.
In some ways, I am surprised and disappointed that I am not further along in my recovery. Admittedly, part of that is probably because I have some unrealistic expectations and I am just used to my body being able to do most things easily. I remember when the only physical things I used to worry about were jumping higher or running faster, not simply being able to stand up or take a few steps.
And although recovery is very slow, already I have made gains that have and would surprise most of my original doctors and therapists. The classification of my injury has even changed for the better and current treating physicians and therapists do expect me to continue making further gains. So, I have to continue to remain patient, stick with it, and see what I can do with things.
I start therapy at the Shepherd Center in Atlanta the third week of January. Most of the things you read about Shepherd describe it as such a great and amazing place. I am excited about starting there but pretty nervous about it as well--nervous because I have been waiting a long time to start and it is, by far, the most expensive thing I have done. The funds we have built up have started to dwindle and my stay in Atlanta will really deplete this hard. I hope my time there is worth it.
Along those lines, I have attached another video of therapy I have done in Charlotte. I like this video because it shows me doing something that appears pretty normal, riding an exercise/spin bike. I will say that the resistance is really low and the pedaling is initiated by my hip flexors but some people may be surprised by what I can do...
Saturday, November 6, 2010
Brian: November Update & Videos
October was a pretty significant month. I completed another two week therapy session in Baltimore at Kennedy Krieger. Also, October 25th marked a year since I was finally able to overcome secondary issues and beginning trying recovery therapies in an attempt to regain as much as I can. I remember talking to my father in the hospital and agreeing to devote as much of the first two years as we could to trying to recover what I could and then reassessing things. While the end of the year will make my actual accident two years ago, that October 25th date is the date we go by since it took that long to get out of the hospital and overcome being basically near bed ridden in Charlotte in my apartment.
I spent the first couple of weeks of October in Baltimore and I would say the trip was a success. This time both my parents went the entire time, which was a little scary, but I survived two weeks in a 900 sq ft condo with them and I think we actually had a pretty good time. It was another two weeks of therapy where we reassessed things and tweaked some of my at-home program since I was last there in June. The first day I had an exam from the doctor that officially showed that I am making progress. Without getting to technical (ASIA-scale), I'd say the test showed that my level of 100% normal sensations and motor function had dropped a level and that I do have some signals crossing the injured area of my spinal cord, which was not the case back when I was there in June (I was considered at ASIA-A, complete after leaving CMC, I am now considered at ASIA-C, incomplete). Obviously, the signals crossing right now are scarce and weak but they are definitely present. This is actually a pretty big deal and the doctors fully expect me to make more gains--but how much and how quickly is TBD.
As usual I try not to get too high or low about anything but this was good to hear. It shows me that the things I have been able to do are paying off. In some medical terminology, they would say my injury has gone from complete to incomplete, which they say only happens in 10-15% of people, for which I was very thankful to hear.
It was also good to see the progress, which has kind of reinvigorated me in some ways. It has also made me think if I can work harder what may else be able to happen? A guy I met there who is an ex-college athlete and has been at this a year or two more than me recently had an exam that showed he gained five levels of sensation and motor function, which is just amazing news. I'm hopeful, as my initial injury level was even lower than his, so if I could gain five levels that would be huge for my recovery. It has made me stop and think that maybe I can gain just as much, if not more, as I continue to work harder.
I posted a few clips of things I do up there, namely some pool therapy and brace walking. The pool therapy is nice because the buoyancy really makes it easier to move things. The pool floor is a treadmill and in the video you will see us trying to duplicate the natural motion of walking the best that we can. I can initiate most of the movement and the therapists help me keep the movement to as close to walking as we can. In the brace walking you will see that the braces keep my legs very straight and most of the movement is from my hip flexor which is a lot stronger on my right side.
The updated status and progress on my injury has been a blessing and it has been good to see that things are paying off. I'm feeling really motivated to even turn it up a notch and encouraged that it also may be opening the doors for to some different types of therapy that appear very effective but limited to people with an incomplete injury status, like I just found out I have become.
Again, I cannot thank you all enough for your support. I promise you that I am working hard and making all the efforts I can in order to take advantage of the therapies that your generosity has helped provide. This has been such an encouraging month that the hard work in therapy has been paying off.
I spent the first couple of weeks of October in Baltimore and I would say the trip was a success. This time both my parents went the entire time, which was a little scary, but I survived two weeks in a 900 sq ft condo with them and I think we actually had a pretty good time. It was another two weeks of therapy where we reassessed things and tweaked some of my at-home program since I was last there in June. The first day I had an exam from the doctor that officially showed that I am making progress. Without getting to technical (ASIA-scale), I'd say the test showed that my level of 100% normal sensations and motor function had dropped a level and that I do have some signals crossing the injured area of my spinal cord, which was not the case back when I was there in June (I was considered at ASIA-A, complete after leaving CMC, I am now considered at ASIA-C, incomplete). Obviously, the signals crossing right now are scarce and weak but they are definitely present. This is actually a pretty big deal and the doctors fully expect me to make more gains--but how much and how quickly is TBD.
As usual I try not to get too high or low about anything but this was good to hear. It shows me that the things I have been able to do are paying off. In some medical terminology, they would say my injury has gone from complete to incomplete, which they say only happens in 10-15% of people, for which I was very thankful to hear.
It was also good to see the progress, which has kind of reinvigorated me in some ways. It has also made me think if I can work harder what may else be able to happen? A guy I met there who is an ex-college athlete and has been at this a year or two more than me recently had an exam that showed he gained five levels of sensation and motor function, which is just amazing news. I'm hopeful, as my initial injury level was even lower than his, so if I could gain five levels that would be huge for my recovery. It has made me stop and think that maybe I can gain just as much, if not more, as I continue to work harder.
I posted a few clips of things I do up there, namely some pool therapy and brace walking. The pool therapy is nice because the buoyancy really makes it easier to move things. The pool floor is a treadmill and in the video you will see us trying to duplicate the natural motion of walking the best that we can. I can initiate most of the movement and the therapists help me keep the movement to as close to walking as we can. In the brace walking you will see that the braces keep my legs very straight and most of the movement is from my hip flexor which is a lot stronger on my right side.
The updated status and progress on my injury has been a blessing and it has been good to see that things are paying off. I'm feeling really motivated to even turn it up a notch and encouraged that it also may be opening the doors for to some different types of therapy that appear very effective but limited to people with an incomplete injury status, like I just found out I have become.
Again, I cannot thank you all enough for your support. I promise you that I am working hard and making all the efforts I can in order to take advantage of the therapies that your generosity has helped provide. This has been such an encouraging month that the hard work in therapy has been paying off.
Saturday, October 2, 2010
Brian: October Update
Like I said in my last update I am getting ready to head back up to Baltimore for another 2 weeks of therapy. It will be interesting to see what progress I have made since I left and what adjustments and new things they want to try. I will be there 10/3-10/16. I am not quite as excited as the first time going but I am looking forward to seeing what they say and getting to work. Also I will get to see Shawn/Javaar Sanders (was a close friend since middle school but became more like a brother and son to my family) and meet his newborn son.
Recently Kara posted a video of stuff I had done at Race To Walk and I told her that video was maybe six months old and I know I have made progress since then. I have heard from a few people that came away impressed with the video. I think I have a hard time associating and calling my small gains progress but I know it is, although it may be SLOW and subtle. Just last week I did a full sit up and we hadn’t tried one In a while but I know I could not do that six months ago and try to remind myself that I could not feel or move anything below my belly button less than a year and a half ago. I still kind of only see progress as something more significant and that shows clear movement leading to getting me out of this chair I hate so so much.
I have actually decided to try to take some video of the things I will do in Baltimore and Atlanta and at some point show some updated footage from Race To Walk. I guess I want to show people that I am making some progress and also show the many people that have graciously donated to help me afford some of the opportunities and recovery efforts they have helped me be able to do. Understand that I have never owned a camera in my life, I really never liked being in pictures and I am terrible with the on command smile. I have only a few pics I keep of family, especially my good looking niece and nephew and a few of my good looking dog, Rocco. I also have a few that I say I keep as proof to show that I have been able to trick a couple of beautiful girls to hang out me on occasion. Since I felt this way about pictures before my accident I am sure you can just imagine how much I don’t want to see myself now.
That phobia aside, I hope to have some footage to post in the next few weeks. I want to thank all the people who continue to read this blog and even email me or call me to check in once in a while. It really means a lot to me and does help to keep me going some tough times.
Monday, September 13, 2010
August Update from Brian
Wow time is just flying by these days, which I guess it does once you get older but after getting out of the hospital and getting over being near bed ridden in October of 2009 it has almost kicked into another gear in my world. I think it is because I have some self imposed deadlines/goals for where I want to be physically as I continue doing what I can to recover. I swear summer just started but we are pretty much getting into fall. The best thing about fall by far is the start of football season! Of course I will watch my teams, NC State and the Washington Redskins, but it is just football in general I am excited about. I really can watch pretty much any college or NFL game and for years football has been my favorite sport to watch. I do want my teams to do well but years of following them with very limited success have conditioned me to not have much in the way of expectations. I definitely miss going to games, I went to a decent amount of NCSU games growing up and some when I was there in school and after graduating my father and I had season tickets but I have not been since my accident. People tried to get me to consider going last year but I did not and I will maybe consider it this year but I know it will not be the same and in some ways that will just make me mad.
The biggest news is that one of my younger twin sisters, Myra, is now engaged! It just happened over Labor Day weekend and I do not think it has really set in yet but I have seen her wearing the ring. I am happy for her and Andrew (not to be confused with Leah’s Andrew) but I cannot help but laugh a little bit since in some ways I still view her as my tomboy little sister I nicknamed Pete, which friends and I at times called her up until probably a few years ago. I remember her being in middle school and wanting to play me in basketball in the backyard. We would play a game maybe to 11 and I would let her take a commanding lead 9-0 before I would always mount a “magical” comeback and win the game. The whole family is really happy for her and really like Andrew and can really tell she is happy with things these days.
I've got a pretty busy rest of the year. I am headed back to Kennedy Krieger in Baltimore for couple of weeks at the beginning of October and finally will be at the Shepherd Center in Atlanta starting the first week of December. I am not sure how long I will be in Atlanta but there is a minimum of one month and you can stay as long as you are making progress and can pay for the therapy. Rarely do I talk about the cost of things but I continue to just be amazed and frustrated with health care costs in general and in particular the cost of care and attempted recovery attempts with a spinal cord injury. I think I have a part time job in talking to my provider. We have had to and continue to fight them on a lot of things. I was self insured before my accident and remember how annoying it was to pay them every month since I NEVER used it or saw doctors. Though they are annoying on many things, sadly I can say I am more than getting my money’s worth these days. One of the best examples of how crazy this stuff is how when I received my lovely wheelchair I had to sign for the receipt of it and the paper showed it as a cost of $7000! (Thankfully insurance paid for most of it). It is hollow metal tubing and some wheels, how that cost can be justified is funny, that is the cost of a half decent used car. Like I have mentioned before, most traditional /insurance covered rehab just teaches you how to "adapt and function" from a wheelchair. Though there are techniques and therapies that have been around a couple of decades and there is evidence of people regaining significant function with techniques used by places like the Shepherd Center, the majority of these things are not covered by any type of insurance. The activities in Atlanta alone will cost about $850 a week and that does not include any accommodations.
As I am sure you can imagine, I am up and down a lot these days, I have my good moments and a lot of frustrating and tough ones as well. I know that I may not be able to keep going after recovery forever but I cannot imagine what I would be doing and thinking if I did not have these opportunities I have been trying to take advantage of for about the last year. I know that they would not be possible without the support I have received and for that I am blessed and thankful.
The biggest news is that one of my younger twin sisters, Myra, is now engaged! It just happened over Labor Day weekend and I do not think it has really set in yet but I have seen her wearing the ring. I am happy for her and Andrew (not to be confused with Leah’s Andrew) but I cannot help but laugh a little bit since in some ways I still view her as my tomboy little sister I nicknamed Pete, which friends and I at times called her up until probably a few years ago. I remember her being in middle school and wanting to play me in basketball in the backyard. We would play a game maybe to 11 and I would let her take a commanding lead 9-0 before I would always mount a “magical” comeback and win the game. The whole family is really happy for her and really like Andrew and can really tell she is happy with things these days.
I've got a pretty busy rest of the year. I am headed back to Kennedy Krieger in Baltimore for couple of weeks at the beginning of October and finally will be at the Shepherd Center in Atlanta starting the first week of December. I am not sure how long I will be in Atlanta but there is a minimum of one month and you can stay as long as you are making progress and can pay for the therapy. Rarely do I talk about the cost of things but I continue to just be amazed and frustrated with health care costs in general and in particular the cost of care and attempted recovery attempts with a spinal cord injury. I think I have a part time job in talking to my provider. We have had to and continue to fight them on a lot of things. I was self insured before my accident and remember how annoying it was to pay them every month since I NEVER used it or saw doctors. Though they are annoying on many things, sadly I can say I am more than getting my money’s worth these days. One of the best examples of how crazy this stuff is how when I received my lovely wheelchair I had to sign for the receipt of it and the paper showed it as a cost of $7000! (Thankfully insurance paid for most of it). It is hollow metal tubing and some wheels, how that cost can be justified is funny, that is the cost of a half decent used car. Like I have mentioned before, most traditional /insurance covered rehab just teaches you how to "adapt and function" from a wheelchair. Though there are techniques and therapies that have been around a couple of decades and there is evidence of people regaining significant function with techniques used by places like the Shepherd Center, the majority of these things are not covered by any type of insurance. The activities in Atlanta alone will cost about $850 a week and that does not include any accommodations.
As I am sure you can imagine, I am up and down a lot these days, I have my good moments and a lot of frustrating and tough ones as well. I know that I may not be able to keep going after recovery forever but I cannot imagine what I would be doing and thinking if I did not have these opportunities I have been trying to take advantage of for about the last year. I know that they would not be possible without the support I have received and for that I am blessed and thankful.
Wednesday, August 11, 2010
Must See Video
Okay, so in posting Brian's update, I was double checking the links to make sure they remained intact & saw that RTW has a video of Brian in action on his client page. Well, this video was great. Tears in my eyes, great. My brother, near death in December 2008, released from the hospital in March 2009 declared paralyzed at T-11, bedridden for I can't even remember how many months (Three? More? Edit: Brian just informed me it was actually seven) from a horrible pressure wound, is actually experiencing some movement in his hip flexors & some muscle contractions/growth in his upper legs.
So, why Brian would never tell any of us much of this (and letting us know about the video?--forget about it) because it is so, so encouraging to see, I just don't know. Wait. I do. It's Brian. Some for better, some for worse, that's just the way he is.
I'm freaking out about this video & call him to tell him how much progress I can't believe he's made & then he proceeds to tell me this video is, like, really old. Like monthS old. So, he's grown (which was evident when we had a great time seeing him this weekend) even more since then.
Which leads me once again to thanking all of you--without your support, your encouragement, your prayers, your donations, who knows if Brian would even be able to have the chance to experience these gains.
So, why Brian would never tell any of us much of this (and letting us know about the video?--forget about it) because it is so, so encouraging to see, I just don't know. Wait. I do. It's Brian. Some for better, some for worse, that's just the way he is.
I'm freaking out about this video & call him to tell him how much progress I can't believe he's made & then he proceeds to tell me this video is, like, really old. Like monthS old. So, he's grown (which was evident when we had a great time seeing him this weekend) even more since then.
Which leads me once again to thanking all of you--without your support, your encouragement, your prayers, your donations, who knows if Brian would even be able to have the chance to experience these gains.
Saturday, August 7, 2010
July Update from Brian
I basically had to take drivers ed to get certified in driving with adaptive equipment which was a little weird at first but I got the hang of pretty quickly. There are all types of adaptive equipment and your need is based on the severity of your injury. I pretty much needed the minimum and most basic kind, basically giving me a lever about steering wheel height that is attached to the gas and brakes. I push forward to brake and pull down for the gas. It is kind of weird to be driving without your feet but I got the hang of it enough to pass the test at the DMV. It will be good to get back to controlling my own comings and goings. I think it will allow me to even use my time more efficiently and wisely.
I am just trying to stick with working on recovery every day. I still go to Race to Walk and do some stuff at home every day as well. After leaving Baltimore I have been using a whole lot of electric stimulation on my lower body. I think between the FES bike I ride at Race to Walk and the at home stim unit I have, I probably put about 4-5 hours a day of electric current through my body on a daily basis. I am not sure what it will lead to but in just a few months I have already seen some changes. With the type of injury I have I have had a lot of muscle atrophy in my lower body. I never really liked mirrors or pictures before my accident and absolutely hate them now and am appalled when I see just how skinny my legs have gotten. I weighed myself recently and do not think I have weighed this little since like the 9th grade, which is not a good thing in my world. The majority of the missing weight is from my lower body but over the last few weeks I have seen it come back, especially on my right side. I do not know what this will lead to but it is good to see some changes.
It is hard to believe how fast time is passing for me these days. Before I know it will be October and I will be back for another couple of weeks in Baltimore. I also have been told that the time is finally coming for me to go to the Beyond Therapy at The Shepherd Center in Atlanta, for a month or two before the end of the year, which I am looking forward to.
(Note from Kara: The attached picture was kindly taken and secretly emailed to us all by our cousin, who helped Brian go pick up his car earlier this week. Thank you, David! Apparently, Brian's first official drive included Charlotte evening rush hour and a deluge rainstorm--baptism by fire as they say, no doubt. He now must be ready to drive cross country! Indeed, he already made a quick little field trip here to Raleigh/Cary today to celebrate Owen's 3rd birthday this morning at Myra's fire station. We really enjoyed having him though I think all of my childless siblings were a little freaked out by some off the toddler shenanigans, I know I certainly am myself, at times. Thanks to all of you as always for your ongoing support! It is because of your help Brian is able to be driving again now--allowing him some much needed and much missed freedom since the accident. I honestly can say this pic captures about the biggest smile I've seen on him since the accident, very close to those he truly has when he thinks no one is looking and he's quietly hanging with one of my kids...)
It is hard to believe how fast time is passing for me these days. Before I know it will be October and I will be back for another couple of weeks in Baltimore. I also have been told that the time is finally coming for me to go to the Beyond Therapy at The Shepherd Center in Atlanta, for a month or two before the end of the year, which I am looking forward to.
(Note from Kara: The attached picture was kindly taken and secretly emailed to us all by our cousin, who helped Brian go pick up his car earlier this week. Thank you, David! Apparently, Brian's first official drive included Charlotte evening rush hour and a deluge rainstorm--baptism by fire as they say, no doubt. He now must be ready to drive cross country! Indeed, he already made a quick little field trip here to Raleigh/Cary today to celebrate Owen's 3rd birthday this morning at Myra's fire station. We really enjoyed having him though I think all of my childless siblings were a little freaked out by some off the toddler shenanigans, I know I certainly am myself, at times. Thanks to all of you as always for your ongoing support! It is because of your help Brian is able to be driving again now--allowing him some much needed and much missed freedom since the accident. I honestly can say this pic captures about the biggest smile I've seen on him since the accident, very close to those he truly has when he thinks no one is looking and he's quietly hanging with one of my kids...)
Monday, June 21, 2010
Brian's May Recap
First, I want to say thank you to everyone that attended, played, and contributed to the golf event in May. I did not really know what to expect on that day and was truly amazed and touched by the turnout. I got to see a lot of friends and former teammates that I had not seen in quite a while. There also were former players from several decades in attendance, including Chris Corchiani, who made up half of the famed backcourt combo Fire and Ice. I have gotten to know Chris a little bit since he is around Raleigh and owns DNJ Mortgage company after a successful career playing basketball overseas. I recently admitted to Chris that I grew up watching him and Rodney Monroe as my idols and knew early on that I wanted to play at NC State because of them. He ended up sharing my story with his backcourt mate Rodney Monroe, who surprised me with a very thoughtful email.
Another thing that touched me was how many people flew in to play from out of state, which was even more amazing, considering the tournament was on a Wednesday. I know I have thanked Dave McGee, the event organizer, but I still feel like I cannot thank him enough. He really did an amazing job especially considering this was the first time he had ever done an event like this. I even had several people who have played in several charity events like this tell me that the Hope to Walk Classic was one of the smoothest events they have participated in.
The month of May ended up being a pretty busy month for me, which was tiring but nice. I was in Raleigh for the golf event for a few nights and left to go to Baltimore the Sunday after. There, I attended therapy at the International Center for Spinal Cord Injuries for two weeks. The first trip to the center is mostly evaluative and my first day was spent being evaluated and meeting Dr. Recio. From the first five minutes upon meeting him, it was apparent that he and the Krieger Institute have a completely different mindset with spinal cord injuries. I cannot tell you how refreshing it was to be in a place with the sole purpose to help SCI patients recover lost feelings and function. To illustrate his point and their mission, Dr. Recio wrote the type and classification of injury I have on a dry erase board, asking me to make note of this--implying that this classification was not where I was going to stay. The remainder of my time was filled doing various physical therapies to evaluate what I needed to focus on in order to maximize my recovery.
I also met a lot of people during my stay there. Many were people like me, making their first trip to the Center and others who had been coming regularly over the last year or two. The majority of the first timers were from other states and there was even one patient I met who came all the way from the Netherlands to be there for a few weeks! It was so good meeting people that had gained a significant amount of feeling and function back--it is just further evidence and assurance of what can happen and that there is no better place I could be going at this time. There are only a small handful of facilities like this in the world and I'm glad I made the decision to go there. I also feel so blessed by the support that has allowed me these opportunities.
The daily therapy I was doing mostly consisted of walking with braces, some aqua therapy, and a lot of core work. The therapist was impressed with the level of core strength I already had which I can attribute to months of working out at Race to Walk (Core strength is vital to me getting out of this chair). The aqua therapy and brace walking really highlighted how I have gained some strength in my hip flexors, especially on the right side. The aqua therapy was a little strange at first, since I have not been in the water since my accident, but I ended up enjoying it. I would get in a small pool and the entire floor would move like a treadmill. Along with two therapists I would simulate walking in the pool on the treadmill floor. The water supports a lot of your body weight, so it really highlights things like my hip flexors that may not be strong but are engaged.
One of the biggest reasons I wanted to go to Baltimore was to see if they could help me figure out the use if an FES Bike. This bike attempts to contract your muscles to pedal the bike via electric stimulation. The bike can help you increase circulation and build muscle and even lead to regaining function. I had been riding one regularly at Race To Walk since late October of last year but unfortunately, like other lower SCI patients, I had been labeled unstimmable after attempting it a few times at the hospital in Charlotte and 4-5 days a week at Race To Walk. Since sometimes people become stimmable over time, I knew that if anyone could get the bike to potential benefit me, it would be in Baltimore. One of the days my father was in Baltimore, by chance we actually ran in to Dr. McDonald. He was basically the inventor of this bike and the Director of the International Center for Spinal Cord Injuries in Baltimore. In fact, he was one of Christopher Reeve's doctors for much of his recovery attempt. Reeve actually was one if the first people put on this bike over a decade ago and he actually gained 75% of his sensation back and 30% motor function back over time using this bike as one of his main activities. It was pretty cool meeting Dr. McDonald and for my dad it was as exciting for him as it would have been for for me meeting Michael Jordan when I was in middle school (Though admittedly I do not think as highly of him as a person these days after learning more about him.). Dr. McDonald even hit me on my quad and calves and told me that I am stimmable. The therapist I had tweaked my bike settings and it looks like I may start to truly benefit from using the bike with the adjusted settings, which is really encouraging news.
I left Baltimore and returned to Mooresville with an at-home workout plan which I follow regularly before returning to Baltimore to start additional therapy on October 1st. I also hope to maybe attend the Shepherd Center in Atlanta before the end of the year. Therapies are still very emergent and so it is beneficial at this stage in the game to try and experience as many different approaches as I can to find what works best for me.
I am trying to stay encouraged, constantly trying to remind myself that I was pretty much bed ridden until October of 2009 and I am only less than a year into my recovery efforts, which again only continue to be possible with the support I have continued to receive.
I am also in the middle of some other transitions in life right now that I hope to have updates on soon.
Another thing that touched me was how many people flew in to play from out of state, which was even more amazing, considering the tournament was on a Wednesday. I know I have thanked Dave McGee, the event organizer, but I still feel like I cannot thank him enough. He really did an amazing job especially considering this was the first time he had ever done an event like this. I even had several people who have played in several charity events like this tell me that the Hope to Walk Classic was one of the smoothest events they have participated in.
The month of May ended up being a pretty busy month for me, which was tiring but nice. I was in Raleigh for the golf event for a few nights and left to go to Baltimore the Sunday after. There, I attended therapy at the International Center for Spinal Cord Injuries for two weeks. The first trip to the center is mostly evaluative and my first day was spent being evaluated and meeting Dr. Recio. From the first five minutes upon meeting him, it was apparent that he and the Krieger Institute have a completely different mindset with spinal cord injuries. I cannot tell you how refreshing it was to be in a place with the sole purpose to help SCI patients recover lost feelings and function. To illustrate his point and their mission, Dr. Recio wrote the type and classification of injury I have on a dry erase board, asking me to make note of this--implying that this classification was not where I was going to stay. The remainder of my time was filled doing various physical therapies to evaluate what I needed to focus on in order to maximize my recovery.
I also met a lot of people during my stay there. Many were people like me, making their first trip to the Center and others who had been coming regularly over the last year or two. The majority of the first timers were from other states and there was even one patient I met who came all the way from the Netherlands to be there for a few weeks! It was so good meeting people that had gained a significant amount of feeling and function back--it is just further evidence and assurance of what can happen and that there is no better place I could be going at this time. There are only a small handful of facilities like this in the world and I'm glad I made the decision to go there. I also feel so blessed by the support that has allowed me these opportunities.
The daily therapy I was doing mostly consisted of walking with braces, some aqua therapy, and a lot of core work. The therapist was impressed with the level of core strength I already had which I can attribute to months of working out at Race to Walk (Core strength is vital to me getting out of this chair). The aqua therapy and brace walking really highlighted how I have gained some strength in my hip flexors, especially on the right side. The aqua therapy was a little strange at first, since I have not been in the water since my accident, but I ended up enjoying it. I would get in a small pool and the entire floor would move like a treadmill. Along with two therapists I would simulate walking in the pool on the treadmill floor. The water supports a lot of your body weight, so it really highlights things like my hip flexors that may not be strong but are engaged.
One of the biggest reasons I wanted to go to Baltimore was to see if they could help me figure out the use if an FES Bike. This bike attempts to contract your muscles to pedal the bike via electric stimulation. The bike can help you increase circulation and build muscle and even lead to regaining function. I had been riding one regularly at Race To Walk since late October of last year but unfortunately, like other lower SCI patients, I had been labeled unstimmable after attempting it a few times at the hospital in Charlotte and 4-5 days a week at Race To Walk. Since sometimes people become stimmable over time, I knew that if anyone could get the bike to potential benefit me, it would be in Baltimore. One of the days my father was in Baltimore, by chance we actually ran in to Dr. McDonald. He was basically the inventor of this bike and the Director of the International Center for Spinal Cord Injuries in Baltimore. In fact, he was one of Christopher Reeve's doctors for much of his recovery attempt. Reeve actually was one if the first people put on this bike over a decade ago and he actually gained 75% of his sensation back and 30% motor function back over time using this bike as one of his main activities. It was pretty cool meeting Dr. McDonald and for my dad it was as exciting for him as it would have been for for me meeting Michael Jordan when I was in middle school (Though admittedly I do not think as highly of him as a person these days after learning more about him.). Dr. McDonald even hit me on my quad and calves and told me that I am stimmable. The therapist I had tweaked my bike settings and it looks like I may start to truly benefit from using the bike with the adjusted settings, which is really encouraging news.
I left Baltimore and returned to Mooresville with an at-home workout plan which I follow regularly before returning to Baltimore to start additional therapy on October 1st. I also hope to maybe attend the Shepherd Center in Atlanta before the end of the year. Therapies are still very emergent and so it is beneficial at this stage in the game to try and experience as many different approaches as I can to find what works best for me.
I am trying to stay encouraged, constantly trying to remind myself that I was pretty much bed ridden until October of 2009 and I am only less than a year into my recovery efforts, which again only continue to be possible with the support I have continued to receive.
I am also in the middle of some other transitions in life right now that I hope to have updates on soon.
Wednesday, June 16, 2010
1st Annual Hope to Walk Classic in Photos
 | |
| Golf carts loaded & at the ready for the 1st Annual Hope to Walk Classic. |
Renee Sprink has posted the golf tournament pics on her website--please take a moment to check them out.
Not only has she donated her time to photograph the event, she's made all pics available for free downloading too (What a great score for Father's Day for some of us!).
Simply visit her website (www.reneesprinkphotography.com), click on "Galleries" and follow "Hope to Walk Golf Tournament" to the pics.
Also, Brian, now back safely from his therapy trip to Baltimore, says he will be posting an update of how things went soon.
Thanks again to you all for your ongoing prayers, interest, kindness, & support!
Happy viewing & downloading!
Thursday, May 20, 2010
Packinsider.com: Brian's Hope to Walk Classic Coverage
I can't say anything to begin to compare with this wonderful video & the accompanying story.
Thanks so much to all of you & I love you so, so much little brother & thank God for the work He is doing in your life.
Thanks so much to all of you & I love you so, so much little brother & thank God for the work He is doing in your life.
Wednesday, May 19, 2010
Brian's Hope to Walk Classic--GREAT Success!
Just wanted to let you all know that today's golf tournament, the brainchild of the superhero, Dave McGee, (with the help of his many lovely assistants) was such a great success.
The kids and I were able to hang out there for a good three hours today and everything was amazing:
The golf course is really up & coming,
The auction memorabilia & tournament prizes had about anything and everything sports has to offer,
The pro-bono photographer was snapping some great shots,
The food from here & here was so, so good (Owen dropped his goldfish in favor of the real stuff quick once he got a taste of that fried flounder & the pasta was great--we can't wait to go use our goodie bag gift card to check out more of the Ruckus menu), and
The support--of sponsors, volunteers, tournament participants, and an awesome turnout of "Who's Who" in athletics--was so much fun. Everyone was great--it was so nice meeting, seeing, and talking with so many of you.
Oh, how I could go on.
I even hear Brian gave a speech...hating I missed that one (but my husband kindly sent me the action shot below as proof, which I am kindly passing on to all of you).
Anyway, I'm sure we'll have some more posts soon with additional details but for those who may be wondering--it was an awesome event.
Thanks so, so much to all of you who made this amazing fund raising event (Over $25,000 raised to help Brian continue his physical therapy journey!) possible, especially you, Dave!
The kids and I were able to hang out there for a good three hours today and everything was amazing:
The golf course is really up & coming,
The auction memorabilia & tournament prizes had about anything and everything sports has to offer,
The pro-bono photographer was snapping some great shots,
The food from here & here was so, so good (Owen dropped his goldfish in favor of the real stuff quick once he got a taste of that fried flounder & the pasta was great--we can't wait to go use our goodie bag gift card to check out more of the Ruckus menu), and
The support--of sponsors, volunteers, tournament participants, and an awesome turnout of "Who's Who" in athletics--was so much fun. Everyone was great--it was so nice meeting, seeing, and talking with so many of you.
Oh, how I could go on.
I even hear Brian gave a speech...hating I missed that one (but my husband kindly sent me the action shot below as proof, which I am kindly passing on to all of you).
Anyway, I'm sure we'll have some more posts soon with additional details but for those who may be wondering--it was an awesome event.
Thanks so, so much to all of you who made this amazing fund raising event (Over $25,000 raised to help Brian continue his physical therapy journey!) possible, especially you, Dave!
 |
| Brian saying thanks at the NTAF Hope to Walk Classic. |
Thank you all so much for what you did today for my brother. Your generosity is overwhelming.
We hope to see you all again next year!
Wednesday, May 5, 2010
Monthly Update from Brian
Earlier this year when I decided to try updating this blog on a more regular basis, I wanted to give it my sense of reality on things. I guess it sometimes comes across as mostly negative and that has not been my intention but it is hard sometimes because so much of this stuff is just that way right now.
At times I do try to make myself reflect on everything and do want everyone to know that I realize that despite how much this sucks that I am blessed in many ways. I know there are a lot of people that this happens to who do not have the motivation--and more importantly--the means and support to be proactive about a recovery. Like everyone's family, I think mine is a little crazy, but I know that I am lucky to have a supportive one. I am lucky also to have my father in my corner and though we may not agree on everything and may do some things a little bit differently, he will fight this with me as long as he can and as long as I want to. I have even become closer to my sisters. For the first time since going off to college, I talk to at least one of my three sisters about everyday.
Also, I am very fortunate that a facility such as Race to Walk opened a few months after my accident just 25 miles away from Charlotte. There are only a handful of places like this in the country (For those that do not know, RTW is a nonprofit facility founded by a family who had a horrible boating accident and wanted to do something about it. Rather than uprooting the whole family to go to another facility out of state for therapy, they decided to open up their own.). How Andy, the founder, works his real job and oversees things at RTW is just amazing. I do not think he ever sleeps. I also have to say the staff there is great; they are a positive group and have grown accustom to and tolerate my constant sarcasm on a daily basis. I do not know what I would be doing and where my head would be if I did not have that place to go to during the week.
It is also funny how things work out sometimes. I know I was fortunate that Coach Sendek and his staff thought enough of my abilities to invite me to the NC State basketball program as I was finishing my senior year in high school. My overall experience there with them was a great and real positive one. I have a lot of great memories and made some of my best friends during my years at NC State. When I arrived on campus Fall 1998, I came in with three other freshmen that I got along with really well. Recently, I have reconnected with former teammates, Carl Lentz and Adam Harrington, which has been a really good thing. Carl was actually just recently down here from Virgina Beach and we saw each other for the first time in over nine years. Out of the three of us, I think Adam is the only one doing what I would have bet on when we met years ago. While I roll around in a wheelchair trying not to think about how a third grade girl could beat me up simply by pushing me over (I know, but I do.), he is playing basketball professionally. Carl is currently a pastor at Wave Church. I recently watched Carl do his thing and it was pretty cool to see. He knows the Bible well and incorporates a lot of the personality I remember into sharing its message. I have always wondered what would have happened if we had all stayed together on the team, I am pretty sure we would have stayed really close. I hope we will do a better job of staying connected in the future.
At times I have second guessed my decision to go to NC State over a smaller school, because I loved the game of basketball and wanted to have a larger role. However, I have come to realize that without my experience at NC State, I would not be getting anywhere near the support I am now. Many of the positive emails, encouraging cards, and generous donations I have gotten are from people who may not have known me on a personal level but just knew of me through NC State basketball.
The connection to NC State has also led to the golf tournament being held for me on May 19th in Raleigh. We have gotten such a great response from sponsors and people playing in the event. In fact, we just learned today that the tournament is full! I have also talked to a lot of former teammates that are planning on attending. Although I am still uncomfortable being out and about in the shape that I am in, I do look forward to seeing a lot of the wonderful people I have not seen in awhile.
I also cannot say enough about Dave McGee, who organized this event to benefit my recovery efforts. Office Dave McGee has been around NC State basketball and football for over twenty years. He retired as a Lieutenant in the Wake County Sheriff's Department a few years ago but continues to work with NC State football and basketball while doing some private investigation work as well. I actually did not talk to him that much while I was at NC State but the year after I was done with basketball we started talking since we were going to the same gym and since then have become really close friends. I am thankful that he thinks enough of me to do what he has done for my family and me. Dave is always on the go and involved in a lot of things, with a lovely wife and two BEAUTIFUL daughters (I know firsthand his wife can take the credit for their looks and look out--I hear he does frequently remind boyfriends or boyfriend wannabes that he does have guns.). While his wife gets the credit for the beauty in the family, I have to attribute Dave's ability to do so much to his mustache. I really think its got to be what gives him his power.
Since the accident, I have gotten a lot of really nice letters and emails and continue to get some to this day. When NC State basketball raised money for me at the Red Rally last fall, I got about 60 or so emails from people that just wanted to wish me well and it meant so much that I emailed everyone back and tried to thank them. I even email back and forth with a few of them still today and continue to be amazed at the support. Recently, I received a very nice letter, donation, and Gloria Estefan CD from a wonderful NC State alum in Florida. We have emailed back and forth several times and he mentioned that he and his wife have become close friends of the Estefans through a lot of charity work. He sent me the CD because several years ago, Gloria was in an accident on her tour bus that almost left her paralyzed though she recovered. Some of her songs were written and inspired from her accident. He said he did not expect to change my musical taste but thought it may be worth a listen. Honestly, I did listen to a good bit of it last week with Eliana (Since they are both Latina, I thought it made sense to wait for her to come by before I listened.). I have even spoken with this gentleman on the phone and he has even discussed my situation with her. It is support like this that makes me motivated to stick with things and not give up. Through my own experiences and meeting people with similar injuries and even worse it is good to see that there are a lot of good in people like this individual and I am sure we will continue to communicate about my progress.
One of the more interesting things recently I also wanted to mention was a book sent to me by Adam Shepard. He is a few years younger than me and is from Raleigh. I believe he went to a small school in Massachusetts to play basketball and after graduating he took $25 and a bag of clothes to Charleston, SC and wrote about his 365 days and his search for the American dream. Inside the book's cover, he wrote a really nice note saying we did play pickup basketball against one another one time (I will just take his word on saying I dominated him on the court). Admittedly, I am not a big reader but it sounds like a pretty cool idea and I plan on reading it during my upcoming stay in Baltimore for therapy.
As I have mentioned before one of the toughest times in all of this was being told by one of the doctors that there is a 5% chance that will ever walk again. As time has gone by I have realized that this is pretty much standard thing that they say to everyone with an injury similar to mine. I would like to point out that Dr. Wise Young, one of the leading spinal cord injury researchers in the world, has said that even Asia A spinal cord injuries have a 10-15% chance of walking unassisted (They classify injuries on an Asia scale A-D with A being the worst, which is what I was told I have.). I take his 10-15% and see my percent immediately going up because my injury is lower then some and I am still relatively young in the world of spinal cord injuries. I also know that at the time of my accident, I was in better physical shape than most, I am used to working out, and most importantly I have the ability to be proactive and go after gaining function. Traditional therapy has a mindset of teaching you to adapt and live out of the wheelchair and while regaining function is not a brand new idea, nobody's insurance covers these attempts. Without the support I have gotten from you all, I would have had to give up my efforts months ago. I know that a lot of people in my situation do not have anywhere near these advantages and that is why I can see that despite these difficult circumstances I am blessed and I just cannot thank everyone enough.
May is going to be an exciting month with the golf tourney on the 19th and I start therapy up in Baltimore on the 23rd. I look forward to seeing a lot of people at the golf course and hope to be able to write to let people know about my experience in Baltimore.
At times I do try to make myself reflect on everything and do want everyone to know that I realize that despite how much this sucks that I am blessed in many ways. I know there are a lot of people that this happens to who do not have the motivation--and more importantly--the means and support to be proactive about a recovery. Like everyone's family, I think mine is a little crazy, but I know that I am lucky to have a supportive one. I am lucky also to have my father in my corner and though we may not agree on everything and may do some things a little bit differently, he will fight this with me as long as he can and as long as I want to. I have even become closer to my sisters. For the first time since going off to college, I talk to at least one of my three sisters about everyday.
Also, I am very fortunate that a facility such as Race to Walk opened a few months after my accident just 25 miles away from Charlotte. There are only a handful of places like this in the country (For those that do not know, RTW is a nonprofit facility founded by a family who had a horrible boating accident and wanted to do something about it. Rather than uprooting the whole family to go to another facility out of state for therapy, they decided to open up their own.). How Andy, the founder, works his real job and oversees things at RTW is just amazing. I do not think he ever sleeps. I also have to say the staff there is great; they are a positive group and have grown accustom to and tolerate my constant sarcasm on a daily basis. I do not know what I would be doing and where my head would be if I did not have that place to go to during the week.
It is also funny how things work out sometimes. I know I was fortunate that Coach Sendek and his staff thought enough of my abilities to invite me to the NC State basketball program as I was finishing my senior year in high school. My overall experience there with them was a great and real positive one. I have a lot of great memories and made some of my best friends during my years at NC State. When I arrived on campus Fall 1998, I came in with three other freshmen that I got along with really well. Recently, I have reconnected with former teammates, Carl Lentz and Adam Harrington, which has been a really good thing. Carl was actually just recently down here from Virgina Beach and we saw each other for the first time in over nine years. Out of the three of us, I think Adam is the only one doing what I would have bet on when we met years ago. While I roll around in a wheelchair trying not to think about how a third grade girl could beat me up simply by pushing me over (I know, but I do.), he is playing basketball professionally. Carl is currently a pastor at Wave Church. I recently watched Carl do his thing and it was pretty cool to see. He knows the Bible well and incorporates a lot of the personality I remember into sharing its message. I have always wondered what would have happened if we had all stayed together on the team, I am pretty sure we would have stayed really close. I hope we will do a better job of staying connected in the future.
At times I have second guessed my decision to go to NC State over a smaller school, because I loved the game of basketball and wanted to have a larger role. However, I have come to realize that without my experience at NC State, I would not be getting anywhere near the support I am now. Many of the positive emails, encouraging cards, and generous donations I have gotten are from people who may not have known me on a personal level but just knew of me through NC State basketball.
The connection to NC State has also led to the golf tournament being held for me on May 19th in Raleigh. We have gotten such a great response from sponsors and people playing in the event. In fact, we just learned today that the tournament is full! I have also talked to a lot of former teammates that are planning on attending. Although I am still uncomfortable being out and about in the shape that I am in, I do look forward to seeing a lot of the wonderful people I have not seen in awhile.
I also cannot say enough about Dave McGee, who organized this event to benefit my recovery efforts. Office Dave McGee has been around NC State basketball and football for over twenty years. He retired as a Lieutenant in the Wake County Sheriff's Department a few years ago but continues to work with NC State football and basketball while doing some private investigation work as well. I actually did not talk to him that much while I was at NC State but the year after I was done with basketball we started talking since we were going to the same gym and since then have become really close friends. I am thankful that he thinks enough of me to do what he has done for my family and me. Dave is always on the go and involved in a lot of things, with a lovely wife and two BEAUTIFUL daughters (I know firsthand his wife can take the credit for their looks and look out--I hear he does frequently remind boyfriends or boyfriend wannabes that he does have guns.). While his wife gets the credit for the beauty in the family, I have to attribute Dave's ability to do so much to his mustache. I really think its got to be what gives him his power.
Since the accident, I have gotten a lot of really nice letters and emails and continue to get some to this day. When NC State basketball raised money for me at the Red Rally last fall, I got about 60 or so emails from people that just wanted to wish me well and it meant so much that I emailed everyone back and tried to thank them. I even email back and forth with a few of them still today and continue to be amazed at the support. Recently, I received a very nice letter, donation, and Gloria Estefan CD from a wonderful NC State alum in Florida. We have emailed back and forth several times and he mentioned that he and his wife have become close friends of the Estefans through a lot of charity work. He sent me the CD because several years ago, Gloria was in an accident on her tour bus that almost left her paralyzed though she recovered. Some of her songs were written and inspired from her accident. He said he did not expect to change my musical taste but thought it may be worth a listen. Honestly, I did listen to a good bit of it last week with Eliana (Since they are both Latina, I thought it made sense to wait for her to come by before I listened.). I have even spoken with this gentleman on the phone and he has even discussed my situation with her. It is support like this that makes me motivated to stick with things and not give up. Through my own experiences and meeting people with similar injuries and even worse it is good to see that there are a lot of good in people like this individual and I am sure we will continue to communicate about my progress.
One of the more interesting things recently I also wanted to mention was a book sent to me by Adam Shepard. He is a few years younger than me and is from Raleigh. I believe he went to a small school in Massachusetts to play basketball and after graduating he took $25 and a bag of clothes to Charleston, SC and wrote about his 365 days and his search for the American dream. Inside the book's cover, he wrote a really nice note saying we did play pickup basketball against one another one time (I will just take his word on saying I dominated him on the court). Admittedly, I am not a big reader but it sounds like a pretty cool idea and I plan on reading it during my upcoming stay in Baltimore for therapy.
As I have mentioned before one of the toughest times in all of this was being told by one of the doctors that there is a 5% chance that will ever walk again. As time has gone by I have realized that this is pretty much standard thing that they say to everyone with an injury similar to mine. I would like to point out that Dr. Wise Young, one of the leading spinal cord injury researchers in the world, has said that even Asia A spinal cord injuries have a 10-15% chance of walking unassisted (They classify injuries on an Asia scale A-D with A being the worst, which is what I was told I have.). I take his 10-15% and see my percent immediately going up because my injury is lower then some and I am still relatively young in the world of spinal cord injuries. I also know that at the time of my accident, I was in better physical shape than most, I am used to working out, and most importantly I have the ability to be proactive and go after gaining function. Traditional therapy has a mindset of teaching you to adapt and live out of the wheelchair and while regaining function is not a brand new idea, nobody's insurance covers these attempts. Without the support I have gotten from you all, I would have had to give up my efforts months ago. I know that a lot of people in my situation do not have anywhere near these advantages and that is why I can see that despite these difficult circumstances I am blessed and I just cannot thank everyone enough.
May is going to be an exciting month with the golf tourney on the 19th and I start therapy up in Baltimore on the 23rd. I look forward to seeing a lot of people at the golf course and hope to be able to write to let people know about my experience in Baltimore.
Wednesday, April 28, 2010
Bake Sale for Brian!
With the help of many fabulous home bakers, we are holding a bake sale as part of the Saturday Kingsland Woods neighborhood yard sale (7am-1pm).
View Larger Map
ALL proceeds will benefit the tax-deductible, nonprofit medical fund set up for Brian.
We will have many wonderful homemade items, all very reasonably priced, for sale--various individual brownies, cupcakes, cookies, muffins, whole pies, and more. Please come by and treat yourself (for a good cause!) and feel free to pass this along to anyone you might know who would also like to come by.
Thanks in advance for your support--just look for the table with the big NTAF banner!
Thursday, April 1, 2010
Another Perspective on the State of Things
First, thank you so much to those of you already responding and planning to participate, in so many great ways, in the Hope to Walk Classic at the Lonnie Poole Golf Course at NC State! Brian has been very touched (as much as Brian can express that sort of thing, of course) by some of the great happenings already underway for this event.
Though Brian appears to be taking over the blog, I wanted to give you all an update too because I think sometimes Brian can be too hard on himself and his progress, or in his opinion, lack thereof. Moreover, as he was knocked out cold from pretty much December 2008 to March 2009, he doesn't quite measure progress from the same baseline the rest of us do. We've got from near death to closer and closer to regaining mobility as our gauge, I think he's forgotten that almost dead part.
Brian's last post got me thinking about all of this when he recalled the rehab hospital. He's right. That place is pretty rough. I don't think I remember so much what everyone else was going through as we were all pretty much focused on him but it does bring back memories of all the things he was facing then--things that, thankfully, he isn't facing so much now.
A couple Sundays ago we made a last minute minute day trip to Mooresville from Cary after church. We met at Brian's apartment to see my aunt and uncle visiting from Ohio. They were staying in Charlotte with my other aunt and uncle. Since we don't get to see either of the sets (or some cousins who came too!) very often and we hadn't been to see Brian in awhile, we thought it was worth the 2-hours-and-15 minutes-each-way drive. For those of you that have small children--we made the day trip with a 9 month old and a 2 1/2 year old and you know what? It actually wasn't that bad. In fact, it was a lot of fun--well except for the last 45 minutes of the drive home, but that's another story.
Anyway, Brian looked great! I thought he might share that they posted some more recent pictures on his client page at Race to Walk--but he's too modest for that I guess. That's what I'm here for--another perspective. Please do take a look. Not only is his upper body quite strong but he's really started to develop some toning in his legs! You also may want to take a look at his NTAF patient page too. With the upcoming golf tournament, we updated that page to reflect some of the more current developments. Doing that too was something that really put things into perspective again for me.
Okay--so here's a neat part about all these recent developments--to develop any sort of muscle tone, you have to have nerve firings. To have nerve firings where you are considered paralyzed there has to be some sort of activity, signals, etc. successfully being transmitted. Brian and the RTW therapists really noticed the toning in his thighs and glutes but I think you can see it all the way down to his calves. With all this exercise-based therapy, he's also able to hoist himself up from the wheelchair and make small rotations with each of his legs from the hip joint (Yes, in essence, MOVE HIS LEGS--albeit slightly, I know). This is for a guy who was rendered completely paralyzed from the navel down in March 2009, who has yet to even complete a full year of intensive therapy (due to bed rest as a result of the intense pressure wound last year) and therapy that he would not even have the opportunity to do if it weren't for the generosity of all of you. Thus, I am hopeful that with another year focused on intensive recovery therapy, Brian will continue to experience some more significant gains.
As much as the physical gains matter, especially to a young athletic male, I am so proud of my brother's attitude and demeanor. As my husband can vouch, our day trip to Mooresville saw Brian more animated and cheery than times even before the accident. Those who know him well could probably sense his personality's return from his snarky update this month. I know he still hates the constant companion of a wheelchair (Hey, Brian, you should name her--how about Rollene?), but he's not as focused on it anymore all of the time. He thinks it makes him less of a person, but he's really the only one who thinks that. The nephew (my two year old son) Brian used to say wouldn't be able to relate to him at all in a wheelchair had a blast sitting on the porch blowing bubbles with him. Owen even begged Brian to come with us on our detour by the "ice cream store" before hitting the road (my husband thought a milkshake would be a great way to keep him quiet--boy, was it ever). His niece, my nine month old, still wonders why his standing frame doesn't have the accessories that her frame does.
All silliness aside, I see Brian continue to grow stronger--physically, mentally, and spiritually--as he braves another day overcoming both the real and perceived limitations. I see the love of family and friends supporting him, helping him, and encouraging him and I am encouraged as I continue to see God be faithful to Brian and our family in this journey here on earth.
This whole ordeal continues to affirm that our God is a loving God who, from the very beginning, made a plan that once sin entered this world, He would redeem us (Genesis 1:1, 26; John 1:1, 3:16). That, in the beginning, the God who is and can do anything and everything, once we chose sin, still decides to use us to demonstrate His glory.
Though Brian appears to be taking over the blog, I wanted to give you all an update too because I think sometimes Brian can be too hard on himself and his progress, or in his opinion, lack thereof. Moreover, as he was knocked out cold from pretty much December 2008 to March 2009, he doesn't quite measure progress from the same baseline the rest of us do. We've got from near death to closer and closer to regaining mobility as our gauge, I think he's forgotten that almost dead part.
Brian's last post got me thinking about all of this when he recalled the rehab hospital. He's right. That place is pretty rough. I don't think I remember so much what everyone else was going through as we were all pretty much focused on him but it does bring back memories of all the things he was facing then--things that, thankfully, he isn't facing so much now.
A couple Sundays ago we made a last minute minute day trip to Mooresville from Cary after church. We met at Brian's apartment to see my aunt and uncle visiting from Ohio. They were staying in Charlotte with my other aunt and uncle. Since we don't get to see either of the sets (or some cousins who came too!) very often and we hadn't been to see Brian in awhile, we thought it was worth the 2-hours-and-15 minutes-each-way drive. For those of you that have small children--we made the day trip with a 9 month old and a 2 1/2 year old and you know what? It actually wasn't that bad. In fact, it was a lot of fun--well except for the last 45 minutes of the drive home, but that's another story.
Anyway, Brian looked great! I thought he might share that they posted some more recent pictures on his client page at Race to Walk--but he's too modest for that I guess. That's what I'm here for--another perspective. Please do take a look. Not only is his upper body quite strong but he's really started to develop some toning in his legs! You also may want to take a look at his NTAF patient page too. With the upcoming golf tournament, we updated that page to reflect some of the more current developments. Doing that too was something that really put things into perspective again for me.
Okay--so here's a neat part about all these recent developments--to develop any sort of muscle tone, you have to have nerve firings. To have nerve firings where you are considered paralyzed there has to be some sort of activity, signals, etc. successfully being transmitted. Brian and the RTW therapists really noticed the toning in his thighs and glutes but I think you can see it all the way down to his calves. With all this exercise-based therapy, he's also able to hoist himself up from the wheelchair and make small rotations with each of his legs from the hip joint (Yes, in essence, MOVE HIS LEGS--albeit slightly, I know). This is for a guy who was rendered completely paralyzed from the navel down in March 2009, who has yet to even complete a full year of intensive therapy (due to bed rest as a result of the intense pressure wound last year) and therapy that he would not even have the opportunity to do if it weren't for the generosity of all of you. Thus, I am hopeful that with another year focused on intensive recovery therapy, Brian will continue to experience some more significant gains.
As much as the physical gains matter, especially to a young athletic male, I am so proud of my brother's attitude and demeanor. As my husband can vouch, our day trip to Mooresville saw Brian more animated and cheery than times even before the accident. Those who know him well could probably sense his personality's return from his snarky update this month. I know he still hates the constant companion of a wheelchair (Hey, Brian, you should name her--how about Rollene?), but he's not as focused on it anymore all of the time. He thinks it makes him less of a person, but he's really the only one who thinks that. The nephew (my two year old son) Brian used to say wouldn't be able to relate to him at all in a wheelchair had a blast sitting on the porch blowing bubbles with him. Owen even begged Brian to come with us on our detour by the "ice cream store" before hitting the road (my husband thought a milkshake would be a great way to keep him quiet--boy, was it ever). His niece, my nine month old, still wonders why his standing frame doesn't have the accessories that her frame does.
All silliness aside, I see Brian continue to grow stronger--physically, mentally, and spiritually--as he braves another day overcoming both the real and perceived limitations. I see the love of family and friends supporting him, helping him, and encouraging him and I am encouraged as I continue to see God be faithful to Brian and our family in this journey here on earth.
This whole ordeal continues to affirm that our God is a loving God who, from the very beginning, made a plan that once sin entered this world, He would redeem us (Genesis 1:1, 26; John 1:1, 3:16). That, in the beginning, the God who is and can do anything and everything, once we chose sin, still decides to use us to demonstrate His glory.
This time of year particularly, I am reminded of the suffering Jesus lovingly and obediently endured. For scarcely a righteous man will one die; yet perhaps for a good man someone would even dare to die. But God demonstrates His own love towards us, in that while we were still sinners, Christ died for us (Romans 5:7-8). Even while submitting to God's will to die on the cross, Jesus loves us so much that He asks God to forgive them, for they know not what they do (Luke 23:34). I am even more reminded of what His suffering produced, And as Moses lifted up the serpent in the wilderness, even so must the Son of Man be lifted up, that whoever believes in Him should not perish but have eternal life (John 3:14-15).
As we know the death of Jesus resulted in eternal life for us, we can truly believe the comfort of Romans 8:18, For I consider that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us.
It also reminds me of an Our Daily Bread devotional I bookmarked last month. An excerpt follows:
When we experience tragedy, we may wonder about God’s goodness. Is God always good? Yes, He is. He doesn’t promise that bad things will never happen to us, but He does promise to be "our refuge and strength” (Psalm 46:1). He doesn’t promise that we will never walk through heart-wrenching circumstances, but He promises that we won’t be alone (Psalm 23:4). God is good--no matter what suffering we are experiencing. Even when we don't understand, we can say with Habakkuk, "Yet will I rejoice in the Lord, I will joy in the God of my salvation" (3:18).
I see this--God's goodness in suffering--in the celebration of Easter. I see this same goodness in suffering in His provision through Brian's circumstance all of the time. I am so eternally grateful and thankful for both.
As we know the death of Jesus resulted in eternal life for us, we can truly believe the comfort of Romans 8:18, For I consider that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us.
It also reminds me of an Our Daily Bread devotional I bookmarked last month. An excerpt follows:
When we experience tragedy, we may wonder about God’s goodness. Is God always good? Yes, He is. He doesn’t promise that bad things will never happen to us, but He does promise to be "our refuge and strength” (Psalm 46:1). He doesn’t promise that we will never walk through heart-wrenching circumstances, but He promises that we won’t be alone (Psalm 23:4). God is good--no matter what suffering we are experiencing. Even when we don't understand, we can say with Habakkuk, "Yet will I rejoice in the Lord, I will joy in the God of my salvation" (3:18).
I see this--God's goodness in suffering--in the celebration of Easter. I see this same goodness in suffering in His provision through Brian's circumstance all of the time. I am so eternally grateful and thankful for both.
Saturday, March 27, 2010
March Update from Brian
I had some follow up appointments at the Charlotte hospital where I was four months or so following the accident. I try to get in and out of there as fast as possible. That place is just depressing. I hate it there and I have no idea how so many people visited me there so frequently. It is not so much that I was there for so long but it is seeing the people at the hospital, so many are just so beat down looking and I can't help but even wonder what they even like about life.
I remember being told by so many staff while there that I had one of the best attitudes of any patient they had ever had. I guess it was because I never really complained and did everything they asked of me with pretty good effort. I do not think I had an exceptional attitude, I was just doing what I felt I should be doing--my parents raised me to be respectful and I figured what good was not getting out of bed to do rehab going to do? I guess a lot of other patients would refuse to participate or even get out of bed. Not that I blame anyone, I was in shock as well with what was going on and many days it would have made plenty of sense to stay in bed. I guess my involvement in athletics makes me unable to understand how you could think any other way though.
I remember just passing by people and seeing them just randomly break down crying hysterically. I admitted before that I cried once or twice but I am very good at keeping a calm demeanor and holding things inside and it was tough to see how upset so many people were.
The last few months I was there I did everything for myself. I would not let anyone help me get up in the mornings because that is just how I am. I like doing things for myself and I struggle accepting and getting help of any kind. I remember the staff even running out of things for me to do in therapy because I had already done everything they cover. I think that is why the slow progress with my recovery efforts is getting to me because I kind of expected to get better and be ahead of everyone else. Unfortunately, there are no guarantees with this stuff and every injury is so different that it isn't worth comparing yourself to others but I can't help myself. I hope that this type of stubborn attitude does payoff at some point.
I do like living by myself and even being by myself but sometimes I think being alone so much just makes me think about things too much. One idea I jokingly just think about it is just becoming the "crazy wheelchair guy." This would mean just embracing and accepting this "life" (note parentheses here because I'm just not going to call this living right now). I am thinking to do this maybe I should get a power wheelchair, wear some short shorts, velcro shoes, and a fanny pack. Also getting hair as white as my father's and maybe even wearing a headband would make sense. I could just go live in a 200 square foot studio apartment, eat canned food (that's about all you can eat with social security), write poetry, speak gibberish, and scare people by talking to myself. I guess I'm not quite ready to go there yet though!
I am sure in a future blog I will go into how I have an almost full-time job fighting with insurance on a pretty much every other day basis. As much as I get frustrated with my provider, I am thankful they consider the Krieger Institute in Baltimore, Maryland, "in network." Without insurance, two to three weeks of therapy would cost $30,000. With my insurance it will cost around $5,500, though I am still exploring financially reasonable accommodation options. I am excited about going and it looks like I'll be headed there in May following the golf tournament being hosted for my benefit and to help pay for this trip by some great friends.
This therapy trip will get me in front of another set of eyes, a set of eyes that are renowned experts in this field and are about as confident as anyone that you can work to get back function. They worked a lot with Christopher Reeve, who had about as bad an injury as you could have, but before he died they assert that through intensive therapies he recovered 70% of his sensation and 25% of his motor function. This, of course, does not happen quickly but the goal is to develop a plan to continue at your home base, so I will look forward to their collaboration with Race To Walk to see what we can do.
I continue to be blessed and amazed with the support I have gotten. Without the help, I have no idea what I would be doing with myself. I have tried to reach out to everyone personally but I never think I am showing enough thanks. I hesitate to say that I can credit everyone of you with preventing me from becoming "crazy wheelchair guy," simply because I know so many of my friends want to see it (though temporarily), but again, thank you.
I'll be sure to keep you posted on how things are going next month and look forward to seeing many of you at the golf course on May 19th.
I remember being told by so many staff while there that I had one of the best attitudes of any patient they had ever had. I guess it was because I never really complained and did everything they asked of me with pretty good effort. I do not think I had an exceptional attitude, I was just doing what I felt I should be doing--my parents raised me to be respectful and I figured what good was not getting out of bed to do rehab going to do? I guess a lot of other patients would refuse to participate or even get out of bed. Not that I blame anyone, I was in shock as well with what was going on and many days it would have made plenty of sense to stay in bed. I guess my involvement in athletics makes me unable to understand how you could think any other way though.
I remember just passing by people and seeing them just randomly break down crying hysterically. I admitted before that I cried once or twice but I am very good at keeping a calm demeanor and holding things inside and it was tough to see how upset so many people were.
The last few months I was there I did everything for myself. I would not let anyone help me get up in the mornings because that is just how I am. I like doing things for myself and I struggle accepting and getting help of any kind. I remember the staff even running out of things for me to do in therapy because I had already done everything they cover. I think that is why the slow progress with my recovery efforts is getting to me because I kind of expected to get better and be ahead of everyone else. Unfortunately, there are no guarantees with this stuff and every injury is so different that it isn't worth comparing yourself to others but I can't help myself. I hope that this type of stubborn attitude does payoff at some point.
I do like living by myself and even being by myself but sometimes I think being alone so much just makes me think about things too much. One idea I jokingly just think about it is just becoming the "crazy wheelchair guy." This would mean just embracing and accepting this "life" (note parentheses here because I'm just not going to call this living right now). I am thinking to do this maybe I should get a power wheelchair, wear some short shorts, velcro shoes, and a fanny pack. Also getting hair as white as my father's and maybe even wearing a headband would make sense. I could just go live in a 200 square foot studio apartment, eat canned food (that's about all you can eat with social security), write poetry, speak gibberish, and scare people by talking to myself. I guess I'm not quite ready to go there yet though!
I am sure in a future blog I will go into how I have an almost full-time job fighting with insurance on a pretty much every other day basis. As much as I get frustrated with my provider, I am thankful they consider the Krieger Institute in Baltimore, Maryland, "in network." Without insurance, two to three weeks of therapy would cost $30,000. With my insurance it will cost around $5,500, though I am still exploring financially reasonable accommodation options. I am excited about going and it looks like I'll be headed there in May following the golf tournament being hosted for my benefit and to help pay for this trip by some great friends.
This therapy trip will get me in front of another set of eyes, a set of eyes that are renowned experts in this field and are about as confident as anyone that you can work to get back function. They worked a lot with Christopher Reeve, who had about as bad an injury as you could have, but before he died they assert that through intensive therapies he recovered 70% of his sensation and 25% of his motor function. This, of course, does not happen quickly but the goal is to develop a plan to continue at your home base, so I will look forward to their collaboration with Race To Walk to see what we can do.
I continue to be blessed and amazed with the support I have gotten. Without the help, I have no idea what I would be doing with myself. I have tried to reach out to everyone personally but I never think I am showing enough thanks. I hesitate to say that I can credit everyone of you with preventing me from becoming "crazy wheelchair guy," simply because I know so many of my friends want to see it (though temporarily), but again, thank you.
I'll be sure to keep you posted on how things are going next month and look forward to seeing many of you at the golf course on May 19th.
Monday, March 1, 2010
February 2010, Update from Brian
I recently decided I am going to try to post updates to this blog as close to a monthly basis as possible. I am little behind with this post since I was working through some computer issues...
I am so over the cold weather that is starting to feel like will never end. I have always hated the cold but I hate to admit that for a while I wanted it to stay cold because the warm weather just made me miss things I used to do with the warm weather.
I am still here in Mooresville and working out at Race To Walk five days a week. I am pretty much here in Mooresville on my own. I have family and a few friends in Charlotte but it is about a 45 minute drive for most of them. Not having friends or family here or a car has made for some quite memorable experiences. I take public transportation to Race To Walk every day. The transportation service is through Iredell County. They are scheduled to get me to Race To Walk at 11 am and pick me up at 5 pm. Apparently this means they can pick me up as early as 10 am and I have been picked up as late as 6:30 pm or not at all (and I live maybe 1.5 miles from Race To Walk).
I have had several interesting conversations with the Transportation Supervisor and have gotten a decent handle on the inconsistency but it has been a little frustrating at times. As annoying as it can be I am lucky to have it. It usually gets me where I need to be (Race To Walk) and it costs me $1 each way. Since I am doing my best to conserve funds for recovery, I do not know what I would do without it.
Since I use this about every day, I have gotten to know several of the drivers pretty well. Since I am usually the only passenger on the van, I talk with the drivers quite a bit. I remember the first day I used the service and how I got into a conversation with the driver about my accident and what I was doing at Race to Walk and how I never thought I would be living in Iredell County and riding public transportation. When I unloaded from the van the driver asked me how my first ride was and I jokingly responded that I felt like I was riding the short bus to school. Oops-- she quickly said, “You shouldn’t say that, my son is deaf and autistic and he rides one to school.” I felt bad (another lesson learned) but she wasn’t mad at me and has become my favorite driver.
I mentioned in my last post how slow physical progress is and how patient you have to make yourself be or I think you would just set yourself up for disappointment and drive yourself crazy. I can say that over the last few weeks I have actually noticed some improvements. My balance, due to increased core strength, has gotten better. I was in bed for so long that sadly even sitting up straight had become challenging. Most recently I can feel my glut/butt muscles starting to fire, which will be a pretty big deal if I can get them a lot stronger. I think back to being in the hospital and not being able to feel below my belly button and now I seem to maybe be on the verge of getting my glut muscles back.
It makes me feel good to see this progress and makes me remain thankful to everyone who has helped me have the opportunity to even be able to go after these gains, especially considering how these are entirely out of pocket treatments not covered by insurance (but that's another post for another day). It costs about $1600 a month to go after gains such as these, which is a lot of money, so I am encouraged that the investment seems to be showing some signs of payoff. I know I cannot do this forever but I hope to give it about as much of a shot as anyone can.
I know many of you have heard me or others talk about my plans to attend therapy programs at The Shepherd Center in Atlanta and I still may end up going but it looks like things are shaping up to have me attend a program in Baltimore, Maryland--Kennedy Krieger Institute, affiliated with Johns Hopkins University. I may be there as early as April. I should have more concrete details and info to pass along in my next post about what's next.
Until then, I will continue to work hard at Race To Walk and explore what options are available to me on all aspects of my recovery.
Again, I have to say that without each and everyone of your help, I wouldn't even be able to experience these recent encouragements in physical gains. Thanks again to all of you for your continued support.
I am so over the cold weather that is starting to feel like will never end. I have always hated the cold but I hate to admit that for a while I wanted it to stay cold because the warm weather just made me miss things I used to do with the warm weather.
I am still here in Mooresville and working out at Race To Walk five days a week. I am pretty much here in Mooresville on my own. I have family and a few friends in Charlotte but it is about a 45 minute drive for most of them. Not having friends or family here or a car has made for some quite memorable experiences. I take public transportation to Race To Walk every day. The transportation service is through Iredell County. They are scheduled to get me to Race To Walk at 11 am and pick me up at 5 pm. Apparently this means they can pick me up as early as 10 am and I have been picked up as late as 6:30 pm or not at all (and I live maybe 1.5 miles from Race To Walk).
I have had several interesting conversations with the Transportation Supervisor and have gotten a decent handle on the inconsistency but it has been a little frustrating at times. As annoying as it can be I am lucky to have it. It usually gets me where I need to be (Race To Walk) and it costs me $1 each way. Since I am doing my best to conserve funds for recovery, I do not know what I would do without it.
Since I use this about every day, I have gotten to know several of the drivers pretty well. Since I am usually the only passenger on the van, I talk with the drivers quite a bit. I remember the first day I used the service and how I got into a conversation with the driver about my accident and what I was doing at Race to Walk and how I never thought I would be living in Iredell County and riding public transportation. When I unloaded from the van the driver asked me how my first ride was and I jokingly responded that I felt like I was riding the short bus to school. Oops-- she quickly said, “You shouldn’t say that, my son is deaf and autistic and he rides one to school.” I felt bad (another lesson learned) but she wasn’t mad at me and has become my favorite driver.
I mentioned in my last post how slow physical progress is and how patient you have to make yourself be or I think you would just set yourself up for disappointment and drive yourself crazy. I can say that over the last few weeks I have actually noticed some improvements. My balance, due to increased core strength, has gotten better. I was in bed for so long that sadly even sitting up straight had become challenging. Most recently I can feel my glut/butt muscles starting to fire, which will be a pretty big deal if I can get them a lot stronger. I think back to being in the hospital and not being able to feel below my belly button and now I seem to maybe be on the verge of getting my glut muscles back.
It makes me feel good to see this progress and makes me remain thankful to everyone who has helped me have the opportunity to even be able to go after these gains, especially considering how these are entirely out of pocket treatments not covered by insurance (but that's another post for another day). It costs about $1600 a month to go after gains such as these, which is a lot of money, so I am encouraged that the investment seems to be showing some signs of payoff. I know I cannot do this forever but I hope to give it about as much of a shot as anyone can.
I know many of you have heard me or others talk about my plans to attend therapy programs at The Shepherd Center in Atlanta and I still may end up going but it looks like things are shaping up to have me attend a program in Baltimore, Maryland--Kennedy Krieger Institute, affiliated with Johns Hopkins University. I may be there as early as April. I should have more concrete details and info to pass along in my next post about what's next.
Until then, I will continue to work hard at Race To Walk and explore what options are available to me on all aspects of my recovery.
Again, I have to say that without each and everyone of your help, I wouldn't even be able to experience these recent encouragements in physical gains. Thanks again to all of you for your continued support.
Wednesday, January 13, 2010
An Update from Brian
First, I just want to say I hope everyone had a good holiday and happy new year.
I know that time this year was better for my family; I can’t even imagine what it was like last year with me unconscious in the hospital. As my sister mentioned in a previous post, this December also marked the year-point since my accident. I do not remember much of anything that day, but it was a little tough that day when I thought about the physical issues I still face. I thought I would have been further along in my recovery then I am. I do try to remind myself of all the secondary injuries and issues I have faced, which all slowed my progress. I often forget I had broken bones and organ issues that have impeded my progress.
I am now three months or so into my time in Mooresville at Race to Walk. I go every weekday for about five hours each day. I do personal training three days a week and my own thing the other two days. Overall It has been a good change for me, I was almost bedridden until late September battling secondary issues and I feel like going to Race to Walk has given me a sense of purpose and made me feel like I am being proactive about things. I am trying to be as patient as possible because progress is SLOW and it can be a little frustrating. With my athletic background I am used to working out and pushing myself physically but this is a different type of working out. It is more mentally tiring and challenging then physically.
Therapy is an attempt to reconnect signals in my body, which makes me feel like my nervous system is going haywire 24/7. It is not the best feeling in the world but it does make me feel like my body is trying. The hope is that the signals bust through the injured area or re-route themselves. My body kind of just hurts, especially my hips and lower back but I kind of expected some pain in muscles and parts of my body I have not been able to really use since 2008. The idea is that you have to strengthen things in a cascading manner; hence, a lot of the focus is on my core and my hips. They were very weak when we started therapy but I do feel them slowly getting stronger.
Mentally, I remain strong but I cannot pretend that this stuff is not tough. Like most people, I did not know all the things that accompany a spinal cord injury. I had no idea that paralyzed limbs were just the tip of the iceberg. This stuff just sometimes makes no sense, for example someone with a high injury may be able to regain the ability to walk but cannot move their fingers. I am trying to remain as positive as possible but it is hard some days. Some days I think, I survived a near fatal accident for this??? I go to sleep to wake up to sit down???
I miss being active, before my accident I lifted 3-4 times a week and played basketball once or twice….man I miss that badly. I do not know how sometimes but I remain quietly confident that all this is a temporary and I do expect this nightmare to end. Sometimes I just get mad, I get mad that there are no more medical advances but mostly mad that I let this happen. I have no idea why but even when I was in the hospital I just expected to get past all these things much more quickly.
I do have another few months in Mooresville and after that it is on to Atlanta or possibly somewhere else for another attempt at therapy. In the meantime, I will just stay with it and do what I can to improve. I am continually thankful for the help I have received, without it and my supportive family I do not know what I would be doing. Your kind contributions help pay for this therapy and in turn, give me some hope as I continue to process life in this different body. I know I cannot focus on this forever and life has to go on but I can say that I feel better about things now than I did four months ago.
Another hopeful development I have been researching, I am about to start taking a non FDA approved drug called 4-AP, available through compound pharmacies and found to benefit about 30% of spinal cord injuries. I would say it is like putting the signals in your body on steroids, so I am hoping will benefit me but I will not know for several weeks.
Again, thank you all for your support and concern. We will continue to try and keep you updated with periodic postings. Hopefully I will do another post in the not too distant future where I will be able to mention some significant improvements. Historically I keep things to myself so I do not talk much about this stuff but I feel the need to open up sometimes, especially given all of your support. All I know is I still refuse to live like this, I am not sure exactly what that means but I know some changes will be made.
I know that time this year was better for my family; I can’t even imagine what it was like last year with me unconscious in the hospital. As my sister mentioned in a previous post, this December also marked the year-point since my accident. I do not remember much of anything that day, but it was a little tough that day when I thought about the physical issues I still face. I thought I would have been further along in my recovery then I am. I do try to remind myself of all the secondary injuries and issues I have faced, which all slowed my progress. I often forget I had broken bones and organ issues that have impeded my progress.
I am now three months or so into my time in Mooresville at Race to Walk. I go every weekday for about five hours each day. I do personal training three days a week and my own thing the other two days. Overall It has been a good change for me, I was almost bedridden until late September battling secondary issues and I feel like going to Race to Walk has given me a sense of purpose and made me feel like I am being proactive about things. I am trying to be as patient as possible because progress is SLOW and it can be a little frustrating. With my athletic background I am used to working out and pushing myself physically but this is a different type of working out. It is more mentally tiring and challenging then physically.
Therapy is an attempt to reconnect signals in my body, which makes me feel like my nervous system is going haywire 24/7. It is not the best feeling in the world but it does make me feel like my body is trying. The hope is that the signals bust through the injured area or re-route themselves. My body kind of just hurts, especially my hips and lower back but I kind of expected some pain in muscles and parts of my body I have not been able to really use since 2008. The idea is that you have to strengthen things in a cascading manner; hence, a lot of the focus is on my core and my hips. They were very weak when we started therapy but I do feel them slowly getting stronger.
Mentally, I remain strong but I cannot pretend that this stuff is not tough. Like most people, I did not know all the things that accompany a spinal cord injury. I had no idea that paralyzed limbs were just the tip of the iceberg. This stuff just sometimes makes no sense, for example someone with a high injury may be able to regain the ability to walk but cannot move their fingers. I am trying to remain as positive as possible but it is hard some days. Some days I think, I survived a near fatal accident for this??? I go to sleep to wake up to sit down???
I miss being active, before my accident I lifted 3-4 times a week and played basketball once or twice….man I miss that badly. I do not know how sometimes but I remain quietly confident that all this is a temporary and I do expect this nightmare to end. Sometimes I just get mad, I get mad that there are no more medical advances but mostly mad that I let this happen. I have no idea why but even when I was in the hospital I just expected to get past all these things much more quickly.
I do have another few months in Mooresville and after that it is on to Atlanta or possibly somewhere else for another attempt at therapy. In the meantime, I will just stay with it and do what I can to improve. I am continually thankful for the help I have received, without it and my supportive family I do not know what I would be doing. Your kind contributions help pay for this therapy and in turn, give me some hope as I continue to process life in this different body. I know I cannot focus on this forever and life has to go on but I can say that I feel better about things now than I did four months ago.
Another hopeful development I have been researching, I am about to start taking a non FDA approved drug called 4-AP, available through compound pharmacies and found to benefit about 30% of spinal cord injuries. I would say it is like putting the signals in your body on steroids, so I am hoping will benefit me but I will not know for several weeks.
Again, thank you all for your support and concern. We will continue to try and keep you updated with periodic postings. Hopefully I will do another post in the not too distant future where I will be able to mention some significant improvements. Historically I keep things to myself so I do not talk much about this stuff but I feel the need to open up sometimes, especially given all of your support. All I know is I still refuse to live like this, I am not sure exactly what that means but I know some changes will be made.
Subscribe to:
Posts (Atom)