Monday, January 11, 2010

January 11th, 2010

Hello once again. It has been a busy busy month since I last posted. With all of the holiday activities, Christmas, New Years it has been a jam packed month of family, friends, doctors and too many Christmas cookies. Kalli and I enjoyed a wonderful Christmas with both her family and mine which was great and I feel like I got everything I asked for. Health, happiness and a dehydrator for making beef jerky. A lot of things are going on right now and there is quite a bit to come in the next few months. But first, I would like to thank a few people.

First off, there has been an incredibly wonderful group of individuals that have been following my every move throughout this journey over the last seven months. Wow, seven months! They call themselves The Prayer Group. With kind words through what feels like hundreds of thoughtful cards they have continually been there showing their faith, support and love. And now, they have gone beyond and continued the support with a gift that will provide several new therapy pieces of equipment that will continue to help me reach my goals.

It is one thing to walk up to someone in front of a whole group of people and give a large gift while at the same time receiving recognition from each and every person who knows how much it costs and that you gave it to them. For this group to stay anonymous to me means even more knowing that they are doing it truly just from their heart. So, thank you very much for the love and support you have given Kalli and I through this very difficult time in our life.

I also want to thank the many others that have also physically, financially, and emotionally supported me. There is no way to go through and name each and every one of you or this blog would be ten pages long. So, thank you as well for everything.

So, in between family gatherings, Christmas parties, and holiday fun there have been a few other things going on that I would like to share. One of those is that I have decided to reach out to a group called DVR which stands for Department of Vocational Rehabilitation. DVR basically tries to help individuals who have become disabled get back into the work force. One of the services that they can provide is to help outfit a reliable vehicle for you to get to work on your own. So, I set up a meeting with one of their counselors and filled out all the necessary paperwork to get into the system in order to receive some services. After meeting with my counselor she informed me that with my situation I would be eligible for assistance on outfitting a van with the necessary equipment in order for me to drive it on my own. Their view is that everyone has to purchase a vehicle in order to drive but not everybody has to invest twenty thousand dollars on equipment in order to have the freedom to drive. So, that is where they will step in and help out. So, right now I am waiting on their decision of when services will be rendered. This is a great opportunity for me to get a reliable vehicle with new equipment professionally installed. So, I will be needing to invest in either a brand new van or a used fully equipped van in which the vehicle cost would then be subtracted from the total purchase. So I am hoping I can find a good used minivan that DVR will approve and co-fund.

Over the last five and a half months I have had probably one of the worst customer service experiences of my life which is so unfortunate because it just makes me wonder how many people have had to go through this same exact thing considering that National Seating and Mobility, my wheelchair distributor, is the largest wheelchair distributor in the country. The last week of the year, Monday morning I gave a call to Chris, NSM's corporate operations manager, who was now heading up the delivery of my chair, asking her "so this is it, this is the last week, are you guys going to be able to deliver in 2009?" Chris continued to assure me that she was doing everything under her power to make it happen. The chair was to be next day air freighted from Quickie manufacture to Chicago on Wednesday and would be there at 2:00. So, Wednesday afternoon I called Eric, the technician that would be putting the chair together, to see if it had arrived. Once again, something had gone wrong and the chair didn't make it on the plane. Mind you, Thursday is New Years Eve, the very next day. Eric responded with a new date and time of Thursday at 10:00am. Instead of the chair being shipped to my local rep and being delivered to my home like it should be, Kalli and I decided we had to drive to Chicago for there was no way that they were going to make it happen if we didn't. So we arrived at NSM around 1:00 and there Eric was putting together my chair. After three hours of patient measuring and screw turning in order to make the chair fit me just right it was finally ready for me to fill out the paperwork and sign off on my new chair.

So, at 4:00pm New Years Eve, I signed and dated 12/31/2009 on my delivery, the very last day of the year, one hour before close. Of course, even though I signed, there were still four things that were wrong, or screwed up about this chair. Even with a member of their corporate team being intimately involved in this delivery they could not get it right. Amazing. With that said, I love my new chair and the power assist wheels have given me an incredible new found freedom. The way I can easily move on carpet and any surface outdoors is truly a blessing. I used to push on tough surfaces or long distances and end up with incredible pain through my shoulders but now with these new wheels most of that pain is eliminated.

Insurance looks at any injury as plain and simply as though you broke your arm whether you broke your neck, or your arm, you receive the same benefits. At the rate in which I am doing therapy, which is only three times a week, I will eat up all of my physical and occupational therapy sessions within the first two and a half months of the year. First off, three days a week isn't even enough in my mind. Second, what do I do with the next nine and a half months? A spinal injury needs so much more attention and time to heal than virtually any other injury. As a result, it is imperative that I seek more. After searching for what to do and where to go for outpatient assistance is $500/day out of pocket and an inpatient setting is closer to $2,000/day we have decided to join a study in Atlanta, Georgia.

In Atlanta there is hospital called the Shepherd Center which is rated one of the top ten hospitals in the country and is probably the largest spinal program in the country. Shepherd is participating in a program called NRN (Neurological Recovery Network) which is an intensive walking program affiliated with the Christopher Reeves Foundation. The study is trying to change the industry by developing a large enough data set that shows distinctly that if an individual with a spinal injury such as mine is given a more intensive amount of therapy they will have an incredibly higher rate of success in rehabilitation. There was a fairly strict criteria for entering the program and my situation, function, and injury level fit exactly what they are looking for. The program works solely on ambulation for an hour and a half five days a week in a specific gym dedicated for that reason. Not only will I be able to participate in the programs activities being part of Shepherd will give me access to their activity center which is basically a YMCA for wheelchairs. Between the study, full access to the NRN program's gym, and Shepherd's activity center Kalli and I will be able to fill each and every day with therapy. Luckily, I know someone in every major city throughout the country, haha. We will be staying with one of my best friends since I was a kid, Bob Schmelzer and his wife, Bethany who have recently moved to Atlanta. There house is only twenty minutes away from the Shepherd center which is absolutely amazing and we couldn't have asked for a better situation. Oh yeah, so I forgot to mention, the way the program works, is that you have to come with a handful of insurance covered sessions of physical therapy and as soon as they run out the Christopher Reeves Foundation will then sponsor me for the program. The program wants you to dedicate at least one month initially, and then if you progress in any of the four specific categories that they are evaluating they will ask you to continue another month. Many people in the program will go on for three, four, five months. This is an amazing opportunity for me to get the best professional guidance all while being sponsored. As of now, our plan is to pack lightly and move around the 21st of February for our new home with Bob and Bethany who have so wonderfully opened up their life with open arms and are already hoping that we love Georgia and never leave.

Even though we are moving to Georgia in a search for an intense schedule of guided therapy it is by no means because we aren't working hard here. Here is our new years schedule: Mondays, Wednesdays, and Fridays Kalli and I wake up at 6 or so and go to the Y to walk for an hour in an open gym time that we have found. It works perfectly to use the basketball court for it is such a nice big open space and there is usually no one there early in the morning. After walking, Kalli helps me get into the pool and she heads to a Yoga class held right there in the Y. I swim, do squats, and many other exercises in the water while she is forming long, lean muscles doing yoga. We then head home, have lunch, and work out in the Platinum Gym here at home until 5 or 6. Tuesdays and Thursdays I have therapy at Theda Clark. We have decided to cut back from three times to twice a week to manage how many credits of therapy we enter the NRN program at Shepherd with. After therapy is basically the same routine, back home for lunch then to the Platinum Gym. Oh yeah, I almost forgot, I also do a longer swim with my brother every Tuesday night as well. So that is four days a week of swimming, I might just turn into a big prune.

As far as updates things are going really well. The new record for walking distance is over 700 feet and hard to even keep track of anymore. I believe the last time I blogged it was right around 470. Everything seems to be getting stronger especially my weaker right leg. In therapy I have even gone as far as unlocking my right leg brace at the knee while walking with the walker. After I came back from Mexico I got on the mat at Theda Clark to do some leg strengthening. Usually when I get on my side and do a set of exercises I need a leg skate with wheels to eliminate friction in order to perform the exercise. My therapist, Chris, immediately was shocked and excited saying "You don't need this skate on your weak leg at all anymore." It is moments like that that truly put a smile on your face, knowing that you are getting better. My parents bought me a set of 15 lb dumb bells for Christmas and it is truly amazing that I am using them to do curls with ease. I will never forget looking back only 4 months ago when I couldn't even hold a two pound dumb bell and I needed wrist weights in order to do curls. Between working at Theda Clark and a ton of therapy with my favorite therapist, Kalli Laflin, we will make sure to work as hard as we can so as to be ready for this up and coming new part of our journey in Atlanta.

All in all, things seem to be going well. Now, goodnight and farewell.