Monthly Journal - September (2018)

Monday, September 24, Through Sunday, September 30 - Finally, a week that I could get back to a normal schedule. My physical strength seems to be returning and my breathing and overall energy level seems to be back to where it was before I came down with pneumonia and had to be hospitalized. My kidney stones didn't bother me at all this past week and I'm hoping that they're small enough to where they are going to pass on their own without having to go to the hospital to go through surgery. Only time will determine this, but the way that I feel right now, I think that they'll pass on their own.


Over the past couple of months, I've realized that the wheelchair that I'm sitting in is probably one of the reasons why my right hip is hurting me so much. Medicare helped me pay for a new chair three years ago, but the chair that I received was not necessarily the chair that I ordered. When you go through Medicare to get a new wheelchair, they send an ATP, which is a certified seating specialist, to measure your body for your new wheelchair. The ATP meets with your physical therapist to take these measurements and the physical therapist can then make recommendations on the type of seating that's necessary for each individual person. When I got my new wheelchair three years ago, I didn't have a physical therapist, so I used a physical therapist that the ATP recommended. Some of the measurements that they took were wrong, and when I got my wheelchair months later, the chair did not fit my body like it was supposed to. Unfortunately, not much could be done about the mistakes. Medicare will only pay for a new chair every five years, but while speaking with my primary care physician, she told me that since I'm not on traditional Medicare, and since I'm using the Medicare advantage plan, there is probably room for negotiations. Plus, she also told me that due to changes in my medical condition, she can recommend that Medicare purchase me a new wheelchair based on the fact that my physical condition declined so much in the past three years. A few months back, I had a CT scan on my right hip, which showed significant damages in the muscle and the nerves, so hopefully this CT scan along with notes from my primary care physician will convince Medicare that a new wheelchair is medically necessary. I am in talks right now with the company that is going to help me get a new wheelchair. The ATP has already scheduled a meeting with Laura, my physical therapist, and both he and Laura will take these measurements and I know that Laura will have my best interest at heart and will make recommendations based on not only what she thinks is best, she'll also take into account my specific needs and wants. This meeting will happen on Thursday, October 16 during my regular physical therapy appointment. After all of these measurements are taken, the wheelchair company will send all the paperwork that they do along with all of the paperwork that my doctor provides them to Medicare for them to make a decision. If Medicare agrees that I need a new wheelchair, the wheelchair company will bring me a few chairs out to my house that I can try, to make sure they we're getting one that is going to properly fit me. Once this happens, they can order the chair and I should receive it within 2 to 3 months. I'm hoping that everything goes well, because a new wheelchair would definitely make a huge difference in not only the way I feel, it would also make a huge difference in my quality of life.


On Thursday, I went to work out with Laura. This had been the first time that I had been to work out in nearly a month and it was nice to get back to a normal schedule, especially my workout routine. When I got there, Laura reevaluated me. She normally does this every four weeks, but we had to complete this reevaluation so that I could begin my workout routine where I left off before I got sick. The reevaluation went pretty well, even though I did decline a little bit for each different exercise, Laura said that the minimal amount of loss that I experienced would be easy to overcome in the next few weeks. Since this was my first time to exercise in nearly a month, Laura did not transfer me out of my wheelchair to the therapy table to work on my stretching. We focused all of our attention on my core strength and did all of our normal exercises with regards to my abdominals and my neck. The exercises went pretty well, and even though I had to stop and rest a few times, both Laura and I were enthusiastic that I should be able to transfer out of my wheelchair and began my stretching and my hamstring exercises by next week. As I stated in my journal entry last week, I miss working out with Laura because she's such an amazing person and a lot of fun to be around. It was nice to see her and all of her coworkers.


In this week’s video, I’m discussing a new delivery system for the Spinraza treatments. This system is called an SIC system. This is an acronym that stands for Subcutaneous Intrathecal Catheter system. Subcutaneous means below the skin level, and this subcutaneous disk has a line that’s called a catheter, that runs from the subcutaneous disk, through the vertebrae, directly into the central nervous system. This SIC system will allow doctors to administer the Spinraza treatments without having to go through any kind of fluoroscopic or CT guidance, and there will be no need for any anesthetic such as lidocaine. This will not only make it easier for doctors to administer the treatment, it will make it much cheaper because there are less procedural tasks that must be performed. With it being cheaper, more insurance companies will probably agree to pay for the treatment which will allow many of those who were once denied treatment the possibility to receive it. While the SIC system is still considered in the experimental phases, I do believe that this system will become available in the near future for everyone who is on active treatment with Spinraza.  Click HERE to view my video.


I hope that all of you have had a fantastic week and I hope that you do something for yourself this upcoming week that will make you a better person. God bless you, and I'll see you next Sunday.

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Monday, September 17, Through Sunday, September 23 - I have been ready for the past couple of weeks to get back to a normal schedule, and I can finally see the light at the end of the tunnel. While my recovery from pneumonia is going well, I now have an old familiar friend making his way back into my life. This is the kind of friend that you don't necessarily want, but for those of us that are sedentary and it sit in wheelchairs for the majority of the day, the friend that I am talking about is a common acquaintance in most of our lives. If you haven't already guessed, I'm talking about kidney stones. I have had surgery for this numerous times in my life and I have a sneaky suspicion that I will be going back into the hospital over the next month or so to remove this ever so common affliction. While the surgery for this is not difficult at all, is just one more thing that I'm having to deal with. Since I know it's going to be another couple of weeks before I can do anything about this, I'm going to try to get back to a normal pace regarding my weekly activities, especially when it comes to my physical therapy.


I've been writing emails back and forth with Laura, and while she's been extremely patient with me regarding my recovery, I know it's time that I get back to a normal schedule and start working out. I spoke to one of her student therapist's the other day and informed them that I would be back on my normal Thursday work out schedule beginning September 27. My first day back, Laura will have to reevaluate me, but this is just a formality so that I could begin my normal schedule with her. As I stated in my journal last week, I miss working out with Laura. Even though my workouts are physically draining, I enjoy working out with Laura because she has such a great attitude and this gives me a chance to get out of the house and break up the monotony of an ordinary week. We will probably have to work out my core muscles for a couple of weeks so that I could regain some of the muscle that I've lost over the last couple of weeks due to my illness. I shouldn't really say that I've lost the muscle, I really should say that these muscles are just not as strong as they should be, so by working these muscles for the next couple of weeks, I should be able to get back to where I was before my illness within a short amount of time.


In this week’s video, I’m giving everyone an update with regards to what happened to me when I had to go to the hospital a few weeks ago. I’m going to tell you why I went to the hospital, what they did to me while I was in the hospital and I will also update everyone on my condition after being released. After being released from the hospital, I experienced a substantial loss of muscle tone in my arms, and for three days after being released from the hospital, I believe that a small amount of depression started to affect me. I discuss these feelings along with what I did to regain the muscle strength in my arms and I’m hoping that my experience will help those of you who are experiencing these types of difficulties in your life. Click HERE to view my video.


I hope that all of you have had a fantastic week and I also hope that you do something for yourself this upcoming week that will make you a better person. Thank you again for giving me a few weeks off to recover from my pneumonia and I think you for sticking with me and continuing to not only watch my videos, but to also support my YouTube channel. God bless you, and I'll see you next Sunday.

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Monday, September 10, Through Sunday, September 16 - This is been an interesting week, full of surprises and possible questions. I spent the majority of the week recovering from my pneumonia. Every day, while on my antibiotic, my doctor recommended that I lay down for a few hours each day. I did this all the way through Thursday, until I finished my antibiotic. Once I was finished with the antibiotic, I forced myself to stay up the entire day so that I could begin getting myself ready to try to bring a little normalcy back in my life. I will say that taking a nap every day did feel good, but when you're trying to recover and your trying to get back to a normal type of day, taking naps will not help you. After my antibiotics were completed, I began drinking my protein drinks again and my muscles started feeling better immediately. Every day, I felt like I gained a little bit more of my strength back and by Saturday, I was pretty much back to normal with regards to my energy level in the way that I felt.


Most of you know that I went to work for a company called BioNews Services full time during the first part of August. BioNews Services has treated me with the utmost respect and allowed me to make a full recovery without any undue pressure to make a quick return. I told them that since I've been off for over ten days, there would be no hard feelings if they wanted to dock my pay because I knew that they had a business to run. I received emails from the two owners of the company telling me that under no circumstance would they dock my pay and they told me to take my time during my recovery and to make sure that I was taking care of myself and that my job would be there whenever I returned. I have worked for numerous companies in the past and none of them treated me with the respect and dignity that BioNews Services did. My first full day back to work was on Thursday, and I can say without any hesitation that I not only enjoy my job, I enjoy those who I work with.


When I got out of the hospital, the doctors recommended that I get a vest to wear that would vibrate to help loosen some of the phlegm in my lungs. After speaking with the company that was going to provide this vest to me, they brought it out and unfortunately, I was unable to wear it. This vest weighed nearly 20 pounds and it was so cumbersome, I couldn't even get it on. They said that they make different sizes and thicknesses of these vests, but the company that I was going through only handled that particular brand. I have an appointment with a pulmonologist on October 16, and I will speak with him about getting a cough assist machine versus a vest. The cough assist will push air into my lungs and then pull the air out of my lungs with the same amount of force that an able-bodied person would use to cough. This will allow me to get up much of the phlegm and mucus that is in my lungs up and out of my lungs, and will allow me to breathe better at night. Most of the people that I've spoken to regarding the cough assist tell me that it works much better than the vest and that I would probably have better results.


I sent Laura an email during the first part of the week and gave her an update as to my status. She wrote me back and told me to continue working on my recovery and not to worry about trying to come back to physical therapy too early. I do feel as if I'm back faster than what the doctors told me that I would, and I gave a lot of credit to this due to the fact that I was taking physical therapy before I got sick. Most everyone that I spoke with told me that it usually takes one week of recovery for every day that you spend in the hospital. That means that it would take me nearly a month to make a full recovery, and since it's only been a week and a half since I returned home from the hospital, I attributed my physical therapy to my ability to recover as quickly as I did. Laura agreed that this probably was the case. I told her that I would probably be ready to resume my workouts the week of September 24. She told me the only thing that we would have to do is to reevaluate me during my first session, and then we could resume where we left off, as if nothing had ever happened. We will probably begin working out my core muscles for a week or two just to bring them back up to shape, and then we will begin working on my legs and my stretching, which involves me transferring out of my wheelchair to one of her therapy tables. Either way I'm excited to get back to work with Laura. I missed seeing her and working out with her every week. It's amazing how when you make friends, and then you don't see them for over a month, you miss them, and I have missed Laura and working out with her. It'll also be nice to get back to a normal routine and leave some of this uncertainty behind.


For those of you that are reading my journal entry, thank you for keeping up with my recovery and please accept my apology for not doing a video over the last couple of weeks. It's been nice being able to take a small break, but I look forward to doing a video this upcoming week and having it ready for Sunday, September 23. In my video on the twenty-third, I will give everyone an update as to how I'm doing and I will also answer a few questions that some of you sent me during my recovery. I hope that everyone has had a fantastic week and I also hope that you do something for yourself this upcoming week that's going to make you a better person. God bless you and until next Sunday.

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Monday, September 3, Through Sunday, September 9 - This is one of those weeks that I never want to repeat again in my life. On Friday, August 31, my caregivers returned home from their family vacation. My primary caregivers are a husband-and-wife, whose daughter used to be my primary caregiver. They always go on vacation every year as a family and when they returned, they both noticed that I didn’t look like myself. Earlier that morning, I had a sore throat that slowly progressed through the day, but when I woke up on Saturday, the sore throat was going away. Saturday was pretty uneventful with regards to activity around the house. We went out and got some lunch and brought it home and about an hour after lunch, I began running a low-grade fever. It wasn’t one of the normal low-grade temperatures that I might run, it felt different. I don’t know what it was that made it feel different, I just knew it was. Within thirty minutes my temperature went up nearly a full degree, so we decided to call an ambulance so that they could take me to the hospital just to get checked out. When the ambulance came to get me, my temperature was 100.3°. By the time they got me loaded up and transported to the hospital, my temperature was 103.8°. Doctors immediately took me from the emergency room to the intensive care unit at Baylor Scott and White Medical Center in Irving Texas. It took the doctors and nurses around two hours to bring my temperature down to 101°, and after accomplishing this, they began running all of their blood work and other tests needed to try to determine exactly what I had. When the diagnosis came back, doctors came into the room and told me that I had pneumonia. I knew then that this was going to be an uphill battle because pneumonia by itself is tough to get over, but if you couple that with having spinal muscular atrophy and an already weakened immune system, this was definitely going to be a fight that I had to be ready for.


Everything seemed to be going well until Sunday, around 3 o’clock in the morning. My temperature spiked from just above 100° to 104.8°. It was around 2:30 in the morning that I started complaining about getting cold and the nurses in the intensive care unit immediately started removing some of the covers that I had on. This went against everything that I had heard. I’ve always heard that when your fever starts to go up, you cover-up to get warm to hopefully start sweating which will break the fever. It wasn’t long after this happened that my temperature spiked. The temperature was so bad that it literally shut my eyes. The throbbing going on in my head was nothing compared to the heat that was coming off my body. My head felt like it was going to explode and even with my eyes shut, I knew that there were doctors and nurses running around me trying to get a handle on my temperature. I remember the nurses telling me to open my eyes and to stay awake. I felt cold compresses being applied to my underarms and to my crotch. They do this because these areas are temperature sensitive points in the body that they target to bring down a temperature. If you would’ve asked me, I would’ve preferred the temperature rather than the ice cold compresses they were shoving at my crotch. This entire routine took nearly 5 hours to bring my temperature down. Once my temperature was down to a manageable level, doctors transferred me to the cardiac care unit where they could monitor my heart and my respiratory conditions. It was in the cardiac care unit where doctors began having me take respiratory therapy. The respiratory therapist would come in and do two different types of breathing treatment, along with a percussion therapy on my chest to loosen any phlegm that had accumulated in my lungs. These breathing and percussion therapy sessions happened every four hours all the way up until 11 o’clock in the evening. They would then resume at 6 o’clock in the morning and this would continue every four hours throughout the day. The nurse and the tech would come into the room every two hours and lift my legs up to my chest to cause positive pressure to help me cough and get up all of the mucus that had built up in my lungs. While it felt good to get all of this stuff out of my body, it really did a number on my rib cage. Either way, no matter how bad it hurt, it had to be done. The next 4 days, the hospital took blood samples from me enough times to make me feel like a pincushion. I asked doctors about putting in a pick line or even a midline so that they can retrieve blood without having to jab me each and every time, but they said that most of these blood draws had to come from different points in the body because they were also checking for blood gas and other antibodies. By the time I got out of the hospital on Wednesday, the tops of my hands made me look like an extremely unsuccessful meth addict. I actually did the math before leaving the hospital and it turns out that I got blood drawn from the top of my left hand fifteen times and ten times from the top of my right hand. They also put an IV line in my tricep in my right arm along with a midline on the underside of my right arm bicep muscle so that they could have an extra line just in case something happened to the IV. On Wednesday, the doctor came in and told me that all my blood work looked good and that if I was feeling up to it, I could go home. Trust me, I was ready to go home so I took him up on his offer.


I was hoping that getting home would be exciting, but it turned out to be one of the biggest challenges that I’ve had to face in quite some time. I didn’t realize just how much the temperature in the illness took out of me. All the strength that I gained over the past year and physical therapy had diminished to nothing. My breathing was shallow and very labored, like I just run a marathon. The frustrating part was that there was no answer as to when and if my strength was going to return. Wednesday evening, all day Thursday and all day Friday were moments in my life that I never want to live again. Most of you know that I’m very excited about the strength that I gained and my overall physical condition, but even I was scratching my head trying to figure out what it happened. Friday evening, when I went to bed, my caregiver had to disengage my electric wheelchair so that he could roll me into my bedroom to put me in my bed. I didn’t even have the strength to push the controller to drive my own electric wheelchair. I could tell that I was really beginning to get depressed about this, but I’m lucky because the caregivers that I have are extremely positive people and they both told me that things would get better, I just had to keep my faith in my Lord and Savior Jesus Christ and that my weakness was probably do to everything that I just experienced and went through. On Thursday, I emailed Laura, my physical therapist, telling her that I was going to need a few weeks to make my recovery. To be honest with you, I was actually scared that I might not ever be able to do my physical therapy again if my strength didn’t return. I knew that Laura would tell me that everything was going to be okay, but I was also scared that being away from her from as long as I had been, that I was probably going to have to go back to my doctor and get another prescription and we were going to have to start the entire process all over again. On Friday afternoon, I received an email from Laura and she told me not to worry about anything and to focus on my recovery. She said that whenever I’m strong enough, I can come back and the only thing that she would have to do is to reevaluate me and we could start as if nothing had ever happened. Saturday morning when I woke up, and I went into my office and got on my desk, I noticed that some of my strength had returned and Saturday actually turned out to be one of the best days of my life. Knowing that I got just a little bit of my strength back gave me reason to believe that my body just needed more time to recover from everything that it had just gone through.


Over the next couple of weeks, I’m going to take a small hiatus from doing my videos so that I can focus on my recovery. I will update my journal every week so that everyone can follow my progress and I’m hoping that after a couple of weeks of recovery, I will be able to not only resume doing my videos, I can also resume where I left off before I became sick. Please check back each Sunday for an update on my condition and I ask for your continued patience and prayers. Please do something for yourself this upcoming week it’s going to make you a better person, and remember, please take care of yourself because believe it or not, you may have more people depending on you then you might think. I had to find this out the hard way. Gob bless.