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.

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. 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.