Hello everyone once again life at RIC has filled itself with more activities than there is time in a day. It has been a while since I have blogged, but here we go, lets get you all updated for a lot has happened in the last week. The last update that I gave was last Friday so lets start out with the weekend. Saturday I got up, worked out in the gym, exercising and muscle building until about 1:00 when the gym closes for the therapists just come in and work a half day. After that Kalli and I went to Navy Pier to walk along the harbor with a good beer while enjoying the hustle and bustle created by the mix of people scurrying about. We decided to get some food at a cool restaurant called Bubba Gumps which was mimicking the movie Forest Gump. The restaurant has great shrimp and we enjoyed it thoroughly. Sunday my parents came down to visit for it was going to be the last weekend that I was here since my last day of therapy was going to be Friday the 16th. They came down in time for us to head to lunch and then drive to Shedd Aquarium. The aquarium was very wheelchair accessible using elevators to explore each floor. After some neat animal shows, beautiful fish aquariums, and much much more we headed back to the RIC to grab my evening medication and meet up with one of my good friends Mike Hanson, his girlfriend, and another friend Dennis. The seven of us decided on a restaurant called Ed Debevics for dinner. Ed Debevics is a very neat sixty's style diner with an unusual twist where waiters are humorously rude and quick tempered. They purposely short you menus and silverware so that you have to ask for more which they then make a huge deal about. Of course, my dad loved this routine and took it to the next level, giving it back to them two-fold. At one point my dad even threw an empty ketchup bottle clear across the table and onto the floor near one of the waiters demanding a new bottle. It was really fun and the food was greasy and delicious. We headed back to the RIC where my parents took off to get back home for it was already getting kind of late and they had a three and a half to four hour car ride ahead of them. My friends stayed and we played cards for a little over an hour until they parted ways heading back to Milwaukee.
Now onto the week's therapy and exercise routines which many are new and will be great to add to my arsenal of therapy skills in order to battle this injury. Using my custom fitted braces I have continued to work on walking through the halls with assistance of not only a therapist but a walker. Now I don't want everyone to just think that I am nonchalantly walking around, here is a visual of what it entails for me to take these first steps. Suited up in the braces, left leg fitted from below the knee to the toe, right leg braced with the knee locked from the groin to the toe, I wheel into the hall in my chair, getting lined up for a good fifty foot stretch of hall. I wear a heavy cloth strap, called a gait belt, for my therapist to control my body and help lift me. With Kalli behind me, in order to bring the wheelchair along, for when I need a break to sit in and my therapist along side of me we get ready to stand. In order to stand I have the right leg with the knee locked stretched out in front of me while I am sitting on the edge of my cushion and the left leg bent at about ninety degrees ready to push with all of its might to get me in standing position. With a count of one, two three, the therapist gives a solid upward hoist on the gait belt while I use my arms and left leg to push me into a full stance. Once we are stable, I begin stepping first with the left leg and then hiking my hip and swinging the right, meanwhile advancing the walker with each step. After about fifty feet, my forehead is beaded with sweat and my left leg is pushed to the limit at which is almost unable to support any weight at all. This is when I so gracefully collapse back into the chair for a two, three minute breather and water break before I do it all over again. Walking almost every day I have gotten myself up to the longest stint of 55 feet without a break and in one session of walking with five breaks making it 327 feet. I didn't quite reach my goal of 500 feet but that was aimed pretty high for the reason of simply pushing me as far as I can.
Since I have been here I have gotten the chance to use the lokomat five times which is such an amazing machine and I would contribute a percentage of my recent success to its unique form of therapy. I believe I have described it many times but here is a quick recap. Basically, I get suited up in a heavy duty rock climbing harness which hangs me above a treadmill where a robotic machine comes up behind me, strapping in my legs at each joint in order to assist them in a natural walking pattern. As you get better and better the lokomat allows you to increase the amount of weight your legs are holding. First time I rode the lokomat we put a maximum of 36 pounds, but by the last time I rode it I was up to 90 pounds of pressure coming down onto my legs and feet. This is almost half of my body weight which really shows the increase in strength and endurance.
Probably one of the best ways of strengthening my legs is using pulleys and slings in order to harness my legs creating a zero gravity experience in which to strengthen specific muscles using exercises that target them directly. I am so glad I was able to come back for last time all I had was a toe wiggling and I was not involved in any sling groups, or individual training. We will be going home with a much greater knowledge on how to do these properly. Over the two weeks I have already seen leg strength increase while doing these exercises. Kalli is such a huge part of this type of training for she now knows how to assist me in order to target even the weakest muscle movement which is where they all start. I feel that I have been so lucky and blessed that my body has not really rejected or lost large amounts of muscle mass. My physical size of all of my limbs have virtually stayed the same whereas many of the other patients have seen between twenty and fifty pounds worth of muscle loss which is so difficult to build back when you are already dealing with just getting the muscles to fire first.
Again this week, I have been able to find time to not only do all of my therapy but also go around and use all of the equipment in order to get a full weight lifting, muscle building workout program in each and every day. I squeeze it in between my classes and different things going on, which usually keeps me working in the gym right up until five o'clock or so when the therapists have to lock up and leave.
Most of the things I am doing are physical therapy activities focused on strengthening my legs and getting my walking. But, one of the other main focuses that I have is bracing my hands in order to rebuild extensor strength and normal hand movement patterns. So, we have been working with both Piper and Diane to create braces that strap on with velcro in order to block my bad habit movement. The right hand has seen very good improvement allowing me to open my hand much further than before.
Kalli and I have reserved an e-stim machine of our own in order to continue to e-stim my ankles, legs and hands throughout the week in between therapies and different scheduled events. Both Piper and Carrie have taught us different placements so as to isolate the proper muscles so that we can continue to retrain the nerve connection where it has been lost. After using this machine it has become a very high priority on our wishlist for the machines that are specifically for e-stim, tens, and pens, which are all different types of electronic stimulation seem to elicit more results. We have not researched how much they actually cost, but I am sure, like all other medical equipment, they are probably a pretty penny.
Also this week I had the opportunity to go into the RIC therapy pool which seems like a glorified bathtub after having been going to the YMCA's Olympic pool for eight or nine weeks with my brother. Although it is small, and I can't condition with laps, or swim down into twelve to fourteen foot depths, I do have professional guidance teaching many new exercises and techniques which I will be bringing home with me. I have learned pedal biking, kickboard seat balancing, squats, side step walking, stair climbing, tall kneeling, and much much more. It has been incredibly beneficial to learn how to take greater advantage of the safety of water exercising and muscle strengthening. It is definitely one of the best ways to go when you are just starting to walk. Walking overground is definitely an excellent practice but while I am still weak, building strength in a pool is such a wonderful way to maximize muscle growth without any potential hazard of hitting the floor. I talked to my brother and we both decided it would be important to kick it up to swimming at least two or three times a week, especially in the beginning here until I am really strong enough to walk safely.
My PT, Carrie, was involved in a meeting where a group of research engineers had requested any volunteers for a study they are doing in developing a new revolutionary ankle muscle return robot. Carrie immediately thought of me, telling them "I know somebody who would be perfect for your study." So I have met with them three times now and am going to be involved in their study for the rest of my stay and then continuing six weeks after that. Basically, they have developed a simple arm connected to a boot that you strap your foot into that is then hooked up to a computer which monitors and controls your every movement the machine can both assist and resist the slightest or strongest movement. Your ankle movement is then hooked up to and programmed for many video games in which you sit and play while strapped in using your ankle movement. They even asked me if I had any requests for specific games that I enjoyed. They would then go ahead and program them to work with the device. I was very interested in the study for my right ankle has movement but is very slight and any sort of exercises like this would be great for its development. It is such a perfect idea to incorporate using your mind along with your movement so that you are continually correlating what you are doing versus just moving it up and down aimlessly. The machine also goes through a complete session of stretches before and after the games. It isn't absolutely positive yet that I will be taking my own unit home for the six week study, but it seems very likely. From experiencing return in all of my muscles throughout my whole body and understanding what seems to work best I know that a program like this will be incredibly beneficial.
On Wednesday I finally had my appointment with National Seating and Mobility to get my long awaited custom made wheelchair with power assist wheels and all. I excitedly went up to the 15th floor ready to transfer into my new ride. Unfortunately, it only took one look and I realized there were many problems with the chair. So many problems I decided not to accept the chair from the company. First off, the on/off switch for the power assist wheels was installed directly behind the break for my right wheel. This was not only completely unfunctional as well as a safety hazard for when I went to put on my break it turned the power assist wheels on. Second, the arm rests were a completely different design than I had ordered. In fact, they were the type of armrest that I could not even take off myself due to some of the limiting functions of my hands making me feel completely trapped in the chair, for every time I transfer they need to be removed. Third, the degree of angle of the front footrest was 70 degrees when we ordered it to be at least 80 if not 90 in order to fit into the bathroom at home because the 70 degree angle creates an additional three or more inches of overall wheelchair length. Fourth, the back canes, also known as the handles we use to push the wheelchair, were a foot too tall making it difficult to store, transport, push, or turn around and access my bag. Fifth, I specifically ordered break locks that you push down when locking the chair so it is not a battle to get over them during transfers, but of course they were installed the opposite resulting in four inch breaks sticking up alongside each leg when in locked position causing a chance to be pierced when transferring. All in all, this chair should not have passed manufacturing inspection, National Seating and Mobilities technicians inspection, or my reps own personal inspection. It most definitely should not have gotten all the way to me where I then have to be the one to show them the multiple malfunctions and safety hazards of this chair I have waited three months to get. So, now imagine, Mark, Kalli and myself sitting with this rep and a counselor from RIC frustrated and heated up to say the least wanting to explode knowing that my options were either to hope and pray they would somehow be able to fix all of these issues or wait god knows how long for another try. So, Mark, Kalli and I decided to ask them to wait a moment while we stepped into the hall and discussed what was going on before we made any decisions. The three of us sat and talked about all of the issues and came to the conclusion that no one in their right mind would accept this chair knowing the headache it would involve in order to get everything redesigned and fit to meet my needs. So, we reentered the room and I basically explained to Denise, my wheelchair rep, that I was not willing to accept the chair and that I would be rejecting it completely. She too was incredibly frustrated with the situation and totally understood the basis in which I made this decision. So, as a group, we then began trouble shooting the issues we were having with this chair and came to a general consensus on a new Quickie GT rigid frame chair that would fit many of my needs much better. So, the waiting game begins again but all in all we learned a lot about what will really work for me and I think I am going to end up with a chair that I enjoy as the end result.
As if all of what as going on wasn't enough stress and complications I also was given a strict discharge date of Saturday the 17th which I did not feel was long enough of a stay to feel strong enough in order for Kalli to assist me walking alone. So, Kalli decided to call Mark, our roommate back home and asked him to come for a day in order to learn the techniques needed to safely assist a big guy like me while walking with a walker. Mark, of course, being the good friend he is, also saw the importance of having someone stronger than Kalli educated in these techniques needed to assist me. So, he checked his calender and work schedule, as well as talked to his boss and headed to Chicago that day. Along with getting Mark to come and learn and help we began another battle with insurance. Many times in this entire process of recovery I have been told "no" in one way or another but each time being the fighter that I am I have decided that there is nothing to lose in giving it one last try to appeal certain decisions. My gosh, the worst thing they can say is no again. So, the reason I was being discharged was solely because my insurance coverage of sixty days of inpatient had come to an end, but even insurance deemed it medically necessary for me to continue to work at RIC towards my new goal of running a marathon. So, I decided to pull out the big guns and go to the top for help. A couple months ago when I was staying at RIC the president of my company and several others came to visit me and Dennis, our president, asked me if there was anything he could do to help me, let him know. Right there and then I told him that at some point or another I will reach the end of my insurance coverage and I very well may need to fight for an extension. So, here we are at the end of my coverage and that is exactly what I did. I called and emailed Dennis, the president of Sheffield Plastics, and Denise, the HR director, and several other key people that I thought would be important in this process. After two whole days of an incredible roller coaster, up and down, I was basically told that Blue Cross Blue Shield does not make an exception on the sixty day coverage and it has never been done before. Then, after sending my medical recovery status notes to Dennis, which he had requested in order to have some data and real facts to share with his counterparts, somehow right at the end, literally hours before the last night of my discharge my case manager gave me a call letting me know that insurance had just called and there was an extension granted. Sometimes, you have to climb out of the box and fight against the norms for the greater good of your own care. It also helps to take a good look at your support team and reach out to those who may be able to make a difference. I now get an entire extra week which may not seem like much but it is probably worth another $14,000 to $20,000 of therapy. Choked up with joy and so thankful for all the efforts everyone involved put forth I began calling everyone I knew sharing the good news and thanking those who had helped make it happen. Interestingly enough when I heard that I was going to be able to continue working on walking I was actually in the middle of one of those breaks, catching my breath, ready to stand and take another fifty steps. Once again, I will push as hard as I possibly can to make every minute here at RIC worth the effort and energy people put in to keep me here. Not only was I grinning ear to ear thrilled that we had beat yet another huge roadblock so were all of the therapists around me for everyone erupted with cheers and clapping the moment we got the news.
So everyone keep the positive energy and prayers flowing my way and I will hold up my end of the bargain by pouring blood sweat and tears day after day in this amazingly fought for last week of therapy here at the best rehab facility in the country.