Thursday, December 13, 2012

December Update from Brian

I have not written in a while but have a little more time this week since I wrapped up my first semester of school last week. I am glad to get a few weeks off and I did not expect it to be quite as time consuming as it ended up being, especially with two lengthy projects due every week. Also recently I had the hours cut at my part-time job which for the most part sucks. They lost a couple of big clients and they were the ones I did the majority of my work with. One of the clients was leaving the area for the west coast and the other was going to try to do things a little differently due to money issues. The hope is to maybe bring me back after the holidays but we will see what happens. I was actually going to approach them about possibly cutting my hours back since working 35 a week with 3-5 hours of therapy a day and school was a little much. Ideally I would like to work 20-25 hrs a week while I continue with both school and daily therapy.

Unfortunately I also had a recent set back with the electrical stimulation I was using for about 6-7 months. As I have said before, the program is to slowly build up to settings that give you a stronger contraction and in addition to increasing the size of your muscles, which gives you a shot a possibly gaining control over them as well. Every time I move to the next protocol I have to figure out what the intensity should be since it does not always remain the same for each protocol. So, I basically turned up the intensity to high and burned myself in a few places, which has set me back a couple of months. It is amazing how much slower things heal the lower on my legs I go. I had burns on my hips and right above my right knee that healed after about two months and I am now finally close to the ones above my ankle healing. Initially, I had to stop stimming for a few weeks but now I am back at it using the previous protocol and we will start to work my way back up to the higher settings. It is frustrating to face these sort of setbacks since it took me six months to work up to a setting that had the most potential and just as I started I had issues with the burns. I think it may ultimately put me four months behind where I hoped be right now. I just have to work thru it but it seems every couple of months I have something that sets me back but I just have to stick with it. I have to remember that there is still the chance of some pretty good results once I get healed and caught up.

My life currently follows a fairly precise schedule, especially with the therapy stuff that I do every week. I keep a lot of lists and track of a lot of things. I keep track of what I do for at Shepherd, the stim, and time in the standing frame at home. I even keep a list of the fruit and vegetables I eat every day, foods I eat to ensure I have enough protein, and even my vitamins and supplements. I did take a break from some of the routine over Thanksgiving, which I spent with my aunt, uncle and cousins in Charlotte. I also made a trip to the University of Alabama to see Dayton play Alabama in basketball. I saw my old teammate, Coach Archie Miller, and his Dayton Flyer squad. It was only about a three hour trip and my friend Chris went with me where we met up with our friend Eric, who lives in Birmingham. It was a good trip, it was interesting to see Alabama’s campus, and Dayton won! I have been around enough basketball to know what makes a good basketball coach and Archie has it all. I know he will be at Dayton for as long as he wants and will be on the short list of every big time school looking for a new coach in a few years.

I am planning on going back to Raleigh for about a week over Christmas. It will be good to see all my family and friends and hope to maybe catch a NC State basketball games as well.

I hope that everyone enjoys the holidays and wish everyone safe travels!

Saturday, October 6, 2012

Fall Update from Brian



My parents & me with Dr. Wise Young
I have not written in a while; I have been pretty busy since I started taking classes online in August. I also have been working about 35 hrs a week with 3-5 hours of therapy a day. Adding school to the mix has made things a little crazy.

I was not sure what to expect with the online experience but it is definitely more work than I thought. It consists of a good bit of reading and I have two projects due every Wednesday, with one group and one individual assignment. I get the feeling that most the people in the class have more experience and are more familiar with the lingo used in the field than I am. I think the biggest surprise is that I have to learn and figure out a lot of things on my own. There are not online lectures but we are given reading assignments and some other files to read but I spend a lot of time searching online for examples and things to read about what we are learning. It is more self-learning than I have ever done but I am sure that is typical of online courses. I can just try to do my best with the time that I have and luckily I have a good partner.

The month of August I was on the road a good bit. I made my first trip back to Kennedy Krieger in Baltimore in about a year and a half. I made the six hour drive into Raleigh and my parents and I rode up to Baltimore for the week. It was another long drive but it was good to spend some time with my folks. I really like the doctors at Kennedy Krieger and I wanted to get back there to meet with them and be reevaluated. The biggest change they noted was that I have gained 35lbs in a year and a half. It is some upper body but mostly my legs muscles from using my stim unit. Also my sensation is getting a little bit better. When I am examined for sensation with my eyes closed I can now tell what leg I am being touched on and I am usually right about the general area. Hopefully that will continue to get better. I was reassured that I have been doing all the right things with my recovery efforts over the last few years. I still do not know where all this effort is going to take me but it is clear I am doing about all I can with what is currently available.

We actually schedule our trip to Baltimore at a time we could get up to New Jersey to meet with Dr. Wise Young at Rutgers. We left Baltimore on Friday around lunchtime to make the three hour ride to Jersey. Dr. Wise Young is one of the best spinal cord injury research doctors in the world. He has been very busy conducting trials in China for the last couple of years, which is where he spends most of his time so we were lucky to get a chance to meet with him. Shortly after I got out of the hospital I was able to get connected to his staff and have spoken to his assistant every few months since. They are planning on conducting trials in New Jersey next year, which I am trying to do all I can to be a part of.

Without getting into it too much there are three phases to have something FDA approved in the USA. Phase 1 is 100% about safety, Phase 2 is still emphasis on safety but they also look at effectiveness and Phase 3 is all about how effective it is and determines whether it is worth doing. They have just finished up the Phase 2 in China and will publish the results in November. Ethically they cannot say much, but I have had discussions and read things that have me expecting some good news. I do not anticipate this to be a home run cure but do believe it to help people regain levels of function. The timing of the trials depend on the fundraising effort to support the study, which is something I am looking to get involved with.

I am about six months into using the stim device which was where we expected the potential for the most changes to occur. Since I am pumping so much current and energy we have had to be very careful and conservative to slowly get to this point. As you can see in the video I have finally gotten to the point where the device helps me contract my muscles strong enough to even move my legs. I am excited to see where this goes in the coming months and will be sure to keep posting.
video

Tuesday, September 4, 2012

Please Come Out & Support David Jeffers

David Jeffers, who was paralyzed from the shoulders down while on family vacation at Kure Beach in 2010, learned of Brian through one of the therapists at Race to Walk.  You all have been so supportive of Brian, that we wanted to share this event with you all to in case you might be able to attend &/or share it with others.  I know we (Brian's sister, Kara & family, hope to make it out!).  David & his beautiful wife also have two beautiful young sons.

Please visit these links to register, view his website, or to find out more.

Thanks!

Thursday, August 16, 2012

August Update from Brian

Summer is coming to an end and time is flying. I have a pretty busy and exciting August. I am making a return trip to Kennedy-Krieger in Baltimore for a week of therapy and evaluation. It will be good to get another set of eyes on my injury to look at my progress and maybe reassess my recovery attack. It has been about a year and half since I made that trip. My leg fracture caused me to cancel the one I had scheduled in February. My parents are coming along for this trip and I look forward to spending time with them.

We are also scheduled to meet with Dr. Wise Young at Rutgers University in New Jersey. He is considered one of the best spinal cord research doctors in the world and is likely the closest doctor to having treatments that would allow injured people to gain back function. He is in the middle of his trials in China and plans to continue them in the USA in 2013. He has to be careful about what he says until the trials are over to not compromise trials but he has made hints about seeing success in his patients in China. It will be interesting to see what he shares with us and if it could potentially benefit my injury. He spends the majority of his time in China and it just so happens that he will be back in Jersey the week we are in Baltimore and hopefully it works where we can drive three hours to meet with him.

Since I am going to be so close to NYC I am going to head there for the weekend to stay with a few friends before beginning the long drive back to NC. I am making the six hour ride to Raleigh and a few days later the six hour ride to Baltimore with my parents. It is going to be a lot of time in the car. I was initially planning on making this my first flight but I decided I did not want to take the chances with the airline to lose or damage the stim unit I worked pretty hard to get. It is too big to carry-on and I do not want to take the chance of having it damaged, especially not knowing how long it would take and if I could get a replacement. I am a few weeks away from moving into the protocols which have more potential for bigger gains.

I have not shared this with many people but I start taking some on-line graduate classes by the end of the month. I am taking them thru Western Carolina in Project Management. I still have my permanent residence in NC and they are the only in-state public school that offers it on-line. I had to apply and write a few things as well as get my transcript and a few reference letters. The program required you to have a 3.0 your last 60hrs of undergrad which I guess I did or was really close but NC State sent the transcript directly to them. First I will earn a graduate certificate that will also prepare me to take the exam to become a certified Project Manager, which I have been told is a pretty good thing to have on your resume. I am not sure if I will continue to pursue my Master’s with it or not? It is TBD.

I have a pretty busy August but I am excited about it and hope I have some good news to share from my trips. It has already been a challenge to manage my time with work and therapy and adding school to the mix will take it to a new level but in the end will pay off.

Thursday, July 5, 2012

July Update from Brian

For those who may not know, I did end up recently having a same day surgery to remove the hardware put in my leg from fracturing my femur about a year ago. Like I mentioned a couple of months ago we found out that the type of frequency used with this stim device could melt titanium like the titanium hardware in my leg. This was definitely a disappointment since I had to completely stop using it on my left quad and hamstring. This also was frustrating since my leg was already smaller and weaker than my right and the imbalance was only going to get worse from the gains made with my stim.

I decided to make an appointment with my ortho doctor to discuss if and when that hardware could be removed. We took some X-rays and I was pleasantly surprised to learn that my bone had healed enough to remove the hardware! I went in on a Monday and due to a cancellation I was able to get it done the Friday of that same week. I was put under for the surgery but was actually allowed to leave the same day. I was not allowed to drive myself home so I had a friend help me out. I never would have guessed I could arrive at the hospital at 7:30 am and be put under for a 45 minute procedure and be able to leave by 2 pm. I left under no restrictions other than being careful to not get my stitches wet or have them come out. I continued my weekly therapy at Shepherd but we were just careful with the stitches and I was able to take them out 10 days after surgery.

I am still on the same stim protocol that I started in June with plans to move to the next protocol in August. I am thankful I am now able to stim my left leg but I have to start with the first protocol since it has not been stimmed in a few months and has to play catch up. So that means I cannot do the right and left hamstrings and quads at the same time since they require different settings. That means my six day a week stim therapy will go from a little over two and a half hours to over three hours. It was already hard to fit it all in with work and my other therapy but I am going to make sure I get it in with the belief that staying with it will pay off in time.

I will keep everyone posted!

Tuesday, June 5, 2012

Thank You!

I enjoyed being in Raleigh for about a week for the Hope to Walk golf event. There was a great turnout and I did not want to leave.

In the hospital when Dave McGee first mentioned wanting to put on some kind of an event, I never would thought it would be in its 3rd year and that it would be done so well. I cannot even put into words how thankful and lucky I am to have the support. I know I may not deserve it but at the same time, I do not know what I would do without it.

A nice little write up that was done on it here.

I am back in Atlanta and back to the routine of therapy and work. It was good to be back home in North Carolina to mix it up a bit.

A few days after Memorial Day I moved to the next protocol on my stim unit. In total there are 11 protocols and I just moved from 3 to 4. It is probably not until protocol 5 and 6 where I will start to see the most visible changes and improvements. I have felt like my leg muscles have gotten a tad bit bigger over the last couple of months and that was confirmed when we measured my legs against the baseline measurements we made at the beginning. My leg muscles have increased in size ¼ to ½ an inch. It is still very early, I have only been using the stim unit this year, but it is good to see some changes pretty early and I definitely expect a lot more muscle mass gain and praying and hoping it leads to return of function over the next few months.

Will continue to keep you posted. Thank you all again so much for your support!

Friday, June 1, 2012

Photos from 2012 HTW Now Available



Hi All!

Thanks again for coming out for this year's Hope to Walk events last month.  It was a great time & goes a long way in helping Brian keep up with his therapy.  He looks great, by the way!  His legs have gotten back so much muscle--they are big again!

The lovely Renee Sprink has posted the photos here.  Simply look in the 2012 Hope to Walk gallery.  They are all FREE to download (click the green arrow) & will be on her site until the end of August.  Some would make GREAT Father's Day gifts as framed prints!

Thank you Renee for sharing your talents once again this year!

Wednesday, May 16, 2012

Hope to See You @ Hope to Walk!

Just a reminder that we've got a lot going on this Friday in support of my brother!

Here's a great article from the Pack Insider about Friday's golf tourney & sports auction.  I also hear there will be a free bouncy house & cornhole tourney out there as well, which I know will be a huge hit with my kids.

The weather also looks to be beautiful--& you are right next to the Farmer's Market too--where blueberries, strawberries, & peaches are all currently in season as a result of the exceptionally mild winter we had this year...so it's just an all-and-all great part of town to be in this Friday!

Also, don't forgot bowling later that afternoon & into the evening at The Alley.  Originally advertised prices have dropped from the original $15 to $10 for adults.

Again, ALL these events & auction items will directly support Brian's medical expenses.  We also hope to have some t shirts & other "Hope to Walk" items out there as well.

We got together for a wild & crazy dinner with "Uncle Brian" this evening--which included lots of putting practice, tricycle stunt riding on the door ramps, & wheelchair races!

Looking forward to seeing you all out there!

Friday, May 11, 2012

April Update from Brian

I’ve been stimning with the new unit for about two weeks now.  Two weeks ago I went to the University of Georgia to have some testing done to see what my muscles looked like and to get a baseline to compare to the changes to come. We looked inside my leg muscles and could see a layer of fat, muscle and bone. They had one of the staff demonstrate on their leg to show me what the non-injured muscle should look like to compare. His muscle was bigger and the muscle fibers showed more and different texture than mine did. They do think that my muscles were not as bad as they could be since they have been very inactive for the last few years. I will be going back down in another few months to test again and see the changes after using the stim.

Unfortunately, a couple of things have not gone very well concerning the stim therapy over the last week or two. Recently, one of my research doctors had a conversation with one of the inventors about my use of the stim unit. They talked about the initial testing we did at UGA and how ideally they wanted me to have an MRI done to get a better visual of my muscle tissue but we could not due to the hardware in my left leg from the fracture I had last year. The inventor went on to say that the type of current in the unit could actually melt or dissolve titanium--like the titanium in my leg used by my ortho surgeon. How crazy is that? I am not exactly sure if it would just break the hardware or maybe even dissolve into the blood stream…either way, none of that is good. I have been instructed to cease stimming my left quad and hamstring for now. I am going to consult with my ortho surgeon and talk about the possibility of taking it out at some point but I am not even sure if that is a possibility.

Towards the middle or end of May is when we are planning on going up to the next protocol, which I am excited about. We started on protocol 3 and are moving to 4 and have been told that 5 and 6 are when the muscles really start to gain strength and size. I responded really well to protocol 3, other than the recent skin burns, and I am praying my muscles start to see more visible changes in protocol 4. I should be well into it next month. I just met with the head of research at Shepherd, Dr. Keith Tansey, to discuss how the stim therapy was going and make sure I understood the damage I could do by not following the warning about the titanium in my leg. He remarked to me that if I did not have any bad luck I would have no luck at all. I thought to myself how he has only known me for a year and a half and isn't even aware of all the mess that I have had to deal with following the accident.

I did not give this another thought until Sunday when I left my apartment to get groceries and was pulled over by an Atlanta Police Officer!  She informed that my tag expired a few weeks ago and was just going to give me a verbal warning. She goes to her car to check my ID like they always do but she came back and asked me if I knew my license was canceled. This was news to me and she showed me what her system said--canceled for medical reason--and that was all. There was not a date or anything else. According to her, for this infraction, I should be arrested and my car towed!  I asked her if she could just follow me the one mile back to my apartment but that was a no. I asked her if I could just go to my church which was ½ a mile away and was in first service and again I got a no. Apparently she would have some sort of liability if she let me drive and I hit anyone. Finally she agreed to allow a licensed driver come and they would release the car. I do not know that many people here, especially that live near my place. My aunt and uncle just happened to be in town watching their grandkids about 20 miles away, so I had to get my poor uncle to come rescue me in midtown Atlanta.

After my 8am therapy the next day, I called the NC DMV and was informed that I was RANDOMLY chosen to have my medical condition checked to make sure my condition had not worsened. They sent a letter out in January to my old apartment in Charlotte, despite the fact I changed all my important addresses to my parent's Cary address and even had my license done to reflect that as well. They faxed me the forms to have the GA doctor fill out and after a couple days of unlicensed driving I am finally good to go--except I have a court date in June that I hope to get out of.

I couldn't help but sit back and think about what Dr. Tansey said and I do sometimes think I cannot catch a break.  There have been so many things I just cannot believe have happened to me and can even make you question your beliefs. I try my best to think how things about how things could be worse. I could have an injury that would prevent me from using my hands and there are more serious medical problems and issues in general people have to deal with. I cannot say it makes me feel better but I do try to use it to make me not think about it as much as I could. I also do my best to remember the good things I do have in my favor and this could not be more evident here in a couple of weeks with all of your support and The Hope to Walk events. I cannot believe it is in its third year! I know in a lot of ways I do not deserve this kind of support, but it has become something I very much look forward to and do not know where I would be without it!

Friday, April 13, 2012

March Update from Brian

Attaching the new stim unit
I have been using the stim for just over three weeks and it is going well. The first couple of months you have to follow pretty conservative protocols with low intensity to not risk damaging your skin or possibly even your muscles. It does not take much intensity to make my muscles twitch, which we hope is a good sign for things down the road. With a needed conservative approach we will not really see too many obvious results. I guess it takes time to wake up muscles that have been asleep or pretty much dead for about three years. It was just good to see them twitch the first few times I did it.

 It is quite a time consuming process, taking about three hours per day, which can make time management a little challenging with work and my other therapy. I am pretty much up and on the go from 6:30 am to around midnight to get it done. I still try to do the standing frame for an hour a day and I am working 33 hours a week but that does not account for my work commutes of 30-60 mins to go 15 miles!!!

The setup to stim each muscle group also can be a little tricky. The electrodes on this device are carbon based and you have to put ultrasound gel on them and use Velcro straps to hold them in place. Doing my quads, hams, calves and tibs was not easy at first but I have it down pretty good now. The gluts are still pretty tough to do. Imagine not being able to stand and trying to secure very large slippery pieces of rubber to your gluts by yourself. I get it done but it does weigh on your patience and for me that takes a lot. In a lot of ways I have come to see that my life is defined by perseverance. Things like the stim unit being difficult to use and something that takes months to even show much benefit but I know sticking with it has to pay off at some point. Since I am the only person ever to use this as a combination with my other therapy and one of the few people to use it in the world, I do not have anything to really reference as far as a progression time line. So I just will stick with it and tell you what happens.

I will likely post in early May but I am looking forward to the Hope to Walk stuff then.  I am hoping to say there for several days.  I miss my friends, my dog, & I need to finally meet my new niece, Iris!

Hope to Walk Golf Classic--Discount Hotel Accommodations Available

Be sure & visit the "Hope to Walk Golf Classic" page on the blog for all the current information for this year's event.

Most recently, we've been given discount rate rooms again this year at the beautiful Hilton Garden Inn in Cary!

To reserve your room, you may call the hotel directly at 919-377-0440 & ask for the "Brian Keeter Hope to Walk Classic" group reservation rate or make your reservation online through the following link.

To receive this rate, please ensure that you make your reservations no later than May 8th.

Thank you once again for this, Trevor!

Tuesday, March 27, 2012

"Hope to Walk" Official Logo! (Post by Brian's sister, Kara)

  
Design by Joe Warner, 89ideas.com




Just wanted to share with everyone the official logo for this year's golf tournament.  I just love it!

Designed pro-bono by Joe Warner--my not-so-"little buddy" from my undergraduate days many years ago at UNC.  Please feel free to check him out at 89ideas.com or on Facebook.  I'm so proud of you, Joey! 

Thanks, "little buddy!"

We hope you will see more of this logo out on the golf course! 

Tuesday, March 13, 2012

Brian's February Update


My 50lb special delivery via my USPS mail carrier.
I FINALLY received my stim unit in the mail!!!!!!!!! 
It has been a LONG, LONG, LONG process, that began all the way back in May 2011. The device came into the country via Miami from the Netherlands.  For some reason, it got stuck there for about two weeks, which was a little nerve-racking. I was very hesitant to push on it since no one was 100% clear on what may be done on a medical device that is not truly US FDA certified and did not want to draw any unneeded attention to it. The research doctors from Shepherd assured me that if it was seized or questioned that they would intervene to make sure it got in but thankfully it did not come to that because I doubt that would be a quick process.
It was actually a little weird how it all went down and since I work at a shipping company that handles domestic and international shipping I tried to be as proactive as possible about it to lessen the chances of delays or other issues. However this one was a little unique since it was going to be handled by the Dutch Post Office and transferred and delivered thru the US Post Office. Most international shipments are via UPS or FED Ex etc so this was new to people that even work in the industry. I did get a tracking number but all it really told me was when it left Netherlands and when it was in the USA. A few days later I got a letter from US Customs/Border Protection that it was being held in Miami for processing. This threw me off since I assumed that it would go thru customs in Atlanta since it is an international airport. I found out that it is held at the first point of entry in the US, so whatever shipment it came on entered in Miami.
I found out that you have to have a licensed customs broker to have your freight even released to be delivered or to go pick it up. I had a broker we had a relationship with thru work lined up to do me a favor and take care of the release for little to no cost and once we found out it was in Miami they got a friend of theirs in Miami to be so kind to do the same. It took a couple of weeks to be released and why it was held I am not sure. So, I was very surprised to have a regular postman bring this to me this weekend. I was expecting to have to go pick it up since it weighs about 50-60lbs and I also was expecting to have to pay duty or taxes on the item but apparently not
Since I began this quest I have emailed with a user of the stim in the UK to get updated on how it is working out for him. In a recent email he told me he has used the device for about 4-5 months and has gained 4 inches of muscle mass in his quads and has begun to have voluntary contractions in his quads. He admits he has not done as much as he should and only on his quads since he works and has kids and it does take a large time commitment. So I know that I will make gains--it will be more a matter of how quick and how much. 

A week or two ago I sat back and came to the realization that I will be the first and only person in the US to use this device and likely the first and only person in the world to combine the therapy I have been doing at Shepherd with this type of stim. I am going to be stimming 5 days a week and stimming my quads, hams, gluts and calves. With adding stim to my routine that was already pretty busy with work and therapy I am going to have to do an even better job of time management. I am excited about this opportunity but have to be patient since results do not start showing up until a few months. I did come across this device and worked hard to bring it to the attention of doctors here in the US but again this would not be possible without the support I have thankfully received from friends and family.  Thank you!  Thank you!

The stim unit inside--thanks to your financial support!


Thursday, February 16, 2012

January Update from Brian

I have been kind of procrastinating on an update since I have yet to get my hands on the Austrian Stim Unit I have been dying to get since May 2011. The last time I wrote I really thought I would have begun the stim program and shared that and maybe some video to show it.  I guess I should not be surprised since it took me about seven months to convince people and find a way to get something that is not FDA approved in the USA. The latest delay is that the makers of the product were updating the firmware and a few features of the device and we all thought that ultimately it would be best to wait. I hope that it ends up being worth it. 
The good news is that Shepherd seems to really be on board doing the study. I just reviewed the study and signed the consent forms and they are pretty much waiting on me to get the device to get this thing going. I knew that they did have an interest but I thought it would be pretty relaxed and just have me maybe check in periodically to see if there have been any noticeable or visible changes in my muscle size or movements.  I was pleasantly surprised to see that we are collaborating with UGA and getting an MRI and other testing done to get a baseline of where I am before I begin the training. This is actually going to be a yearlong study with various tests at other intervals throughout the trial. As I have said before it takes time to see benefits with the device.  It may be a couple of months before I start seeing gains and six months or more to really have a good idea of how beneficial it may become. I do take Shepherd’s investment of time into it as a good sign.
Good news on the family front. My older sister, Kara, had her third kid last week! In my world deciding to have three on purpose is crazy but I am sure Iris Jane will bring us all a lot of joy. She was just over 7 pounds and 20 and ½ inches.  I have only been able to see pictures but look forward to meeting her in a few months. Something a little crazy but impressive that I was told is that even a few days before and the actual day Kara went into labor, she was running three miles on a treadmill!!!  I cannot imagine being pregnant period much less full term and running.  I know a lot of people cannot run period.  I enjoyed seeing the pictures of Iris Jane but they also make me miss being in NC. I do not dislike being in Atlanta but know that I would not be here if I never had my accident and would prefer to be closer to friends and family but for now this is where I need to reside.
Speaking of things that make me miss home, planning has begun for the 3rd annual Hope To Walk charity golf event and information is being sent out.  I cannot believe that there is going to be a third one and that it is just months away. I am glad to hear that this year it will be held on a Friday, May 18th, which will make it easier for out of town folks to attend, I hope.  I am looking forward to this event and I am very fortunate and blessed to have this event held for me again.
I am not going to speculate about the device but I will be shocked if I do not have it by the next time to write an update. Once I get the device I will work up to training with it two hours a day, which will make me have to balance my time even better then I already do, which will be a challenge but one I look forward to. I have included one short video of me doing some full body workout at Shepherd. This is mostly working my core and chest and arms. The priority has been and will always be my lower body but we also look for ways to challenge the rest of my body, especially my core, which you need for just about everything.


Sunday, January 15, 2012

December Update from Brian

I hope everyone good holiday and 2012 is off to a good start. I went back to Raleigh for Christmas and stopped in Charlotte on the way to and from Atlanta. It was great catching up with friends and family in both places. I really miss the fact that the drive from Charlotte to Raleigh was a quick 2.5 hr ride and the drive from Atlanta sucks being 6 hours! I made sure I got to stay a few nights and see everybody because I am not exactly sure when I will be back.
  
The family and I had a good time with some dinners, church and some gifts, mostly for the kids. It is always fun to watch them open gifts and how excited they get. It is always good to go home and see people but I would probably say this is the most I ever did not want to leave.  That is really saying something because I have always been someone who likes to be where their stuff is located. I like my TV, my bed, my remote, my shower etc. I have always been like that but it has gotten even more that way since my accident. That is a large in part with regard to how I have to worry about accessibility also.  I miss the days where I could go anywhere without thinking about things like that and even the floor was good enough for me for sleep.  For those reasons I spent most of my time in a hotel that is only made possible by my friend, Trevor, helping me out with the rate--I owe him big time for that. He has done it for me countless times. 

This time, even as I was leaving my parents house to head back to Atlanta, my dog, Rocco, jumped into the back seat like he wanted to go. That is something he has never done before and made me feel bad since I am not sure when I will be back.  I miss him and I think I apologize to him all time since this is not what I promised him when I got him my last year at NC State. For those who do not know Rocco, he is a Rottweiler/German Shepherd mix I rescued when he was 3 months old.  I was supposed to have a fenced in yard for him at this point. I am very fortunate that he has been taken in by my parents, who love dogs and have a fenced in yard and a couple of lady friend dogs for him to mingle with.
I am getting used to my new schedule with both working and therapy. The first few weeks it wore me out pretty badly but I am getting used to it and for the most part enjoying my work.  I was hoping to have the stim unit I mentioned last time I blogged but as expected it has been a little delayed.  Again, this stim unit is intended for people who have injuries down at the lower part of the spinal cord, the roots, where it branches out and takes signals to your lower muscles. Although it is not available yet in the US it has been labeled as beneficial by some of the best US spinal cord injury doctors. They claim over time it can restore muscles. I believe it will at least make my skinny legs a little better and hope that it does help restore the strength of my muscle control. 

Although it is condoned by the research folks at the Shepherd Center, it was up to my dad and me to figure out the financing to make it happen.  I guess like as it is with a lot of things, funding is something tight for everyone these days. My dad and me took the time to write a proposal to the company conveying what we were trying to do and asking for any help we could get from the company discounting the item, since I would pretty much be a case study for them here in the US.  I am fortunate that my dad has experience in writing things like this so between both of our words and his formatting I think we put something together that was pretty well put together. It was shown and supported by the folks at Shepherd but it was totally up to us to submit it.  I thought it made sense for them to do this to give the proposal more credibility but I guess it is just a scientist thing.  They did allow us to include their contact info on the proposal we sent.
Unfortunately, it took a few weeks for us to hear back from them, but we did end up getting a small discount of a couple of thousand dollars off the device.  It will be here in a month, being shipped from the Netherlands, but it is another week or so before the updated version will be ready and it also has to clear customs.  The fact that I am now working at a company that handles international shipping may help speed this process up or at least prevent it from slowing down.  It is a shame that it is so difficult to get something here that could really help so many people out. I have read many articles saying how the slow process of FDA approval with all the red tape is putting the US behind in the medical industry.

My dad and I also look forward to doing what we can to help this device become available to others that need help. We have actually been encouraged by one of the top Spinal Cord Research Doctors to go after this and make it happen. We are planning on starting with war veterans since a good amount of them come home with spinal cord injuries like mine. I have had so many people help me out that I look forward to helping others.  I will keep you updated on that and hope to have the stim up and going here in a few weeks.