Monthly Journal - July (2018)

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Monday, July 30, Through Sunday, August 5 - This is been an amazing week for me. It's been one of those weeks where everything fell into place. Along with having a wonderful week, I received a job offer that I could not refuse. I will detail my new job a little further down in this journal.


When I went to workout with Laura on Thursday, we began by doing my new exercises with the resistance band on my neck muscles. We got the hardest exercise out of the way, which was the one where Laura would put the palm of her hand on the back of my head and pushed my head forward. We're not using resistance on this particular exercise because this muscle is still underdeveloped. Overall, I did pretty good on this exercise this week. I had to stop quite a few times and rest my neck, but after resting for about ten to fifteen seconds, the muscle recovered and we were able to continue the exercise until we completed all the repetitions. The exercises that we did with the resistance band on my neck muscles went well. I can actually tell the difference in the way that my muscles feel in my neck since starting these exercises. All of my other exercises went well and surprisingly, I wasn't as fatigued as I usually am after my workout.


As most of you are probably already aware of, I have been creating YouTube videos for a company by the name of BioNews Services LLP for the past three months. Along with creating two YouTube videos per month for them, I also create weekly podcasts for Flash Briefing series that they put on their Amazon Echo devices every Monday. About a month ago, one of the owners of BioNews sent me an email asking if I would like to get further involved with their company. I wrote him back and told him that I would be interested in getting further involved. On Monday, July 30, I received an email requesting a conference call with the owner of BioNews. We scheduled this conference call for Tuesday, July 31. I was expecting them to ask me if I would be interested in producing an additional video or maybe adding a few more podcasts each month. To my surprise, the owner of BioNews offered me a full-time position with their company. After speaking with Chris, the owner, I am now the new manager of all of their discussion forums for BioNews. Their discussion forums are where individuals can go and ask questions and answer questions from those who have certain diseases and illnesses. The following is a list of the different discussion forums that I am now managing:


  • Spinal Muscular Atrophy (SMA)
  • Multiple Sclerosis
  • Parkinsons Disease
  • Pulmonary Fibrosis 
  • Pulmonary Hypertension
  • Friedreich's Ataxian (Coming Soon)

Each individual forum have one or two moderators, and their job is to ensure that all newcomers are welcomed and that their questions are responded to in a timely manner. My primary responsibilities are to ensure that the moderators are keeping up with all of their assigned tasks, and to also improve the amount of traffic that is generated on each of these individual forums. As each forum continues to grow, advertisers will begin placing their ads on our forums, which will then generate more income for the company. I am also responsible for generating all of the analytics, which is all of the statistical data showing progress and changes that occur on a weekly basis.


In this week’s video, I discuss how early Spinraza treatments improved the outcomes of children with SMA. A recent study performed in Germany, reported substantial increases in the amount of SMN2 protein in children who were administered Spinraza treatments early in their life. I go over the results of this study, explain how this study works, and the benefits that were achieved. I’m asking everyone who watches this video to please take time out of your day to contact your local congressman, senators, and the governor of the state in which you live, and urge them to include SMA in all newborn screenings. Currently, there are approximately four to six states that currently test newborns for SMA. We need to express our feelings and let those, who have the power to make these changes, understand that we want SMA to be part of newborn screenings in all fifty states. If we make our voices heard, we can accomplish this very important task. Please do your part by writing a few letters, so that we can be a voice for those who are too young to speak for themselves. If you live outside the United States, you too can make a change in the country that you live in. Given the amount of children that are born with SMA each year, this is a global issue that will require a global response from people like us. Click HERE to view my video.


I did a podcast this past week were I discussed the importance of adding SMA to the newborn screening list in all fifty states. While there are a few states that have already started screening for SMA on newborn testing, there are many more who have yet to follow suit. Adding a disease to this newborn screening list s a difficult process, and even though SMA has been added to the national list of diseases to screen for in newborns, it must also be adopted by each individual state. Surprisingly, some states are going to be extremely slow in adding this to their list. Please take time out of your day to listen to this very important podcast because this subject is very dear to my heart. Click HERE to listen to my podcast.


I hope everyone had a fantastic week and I hope your upcoming week is better than the previous. Do something for yourself this upcoming week that's going to make you a better person. Until next Sunday, God bless.

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Monday, July 23, Through Sunday, July 29 - It seems as if it is either feast or famine with regards to how my week is going to go. After finally getting all the repair work done on my house, I thought this week was going to be somewhat quiet. To my surprise, this wasn't the case. As I sit here writing my journal, I'm staring at the other desk that's in my home office and I have three stacks of mail that I have to go through in the next few days. Since I pay all my bills online, I know I have nothing due, it just seems a little depressing to know that I have not yet opened all my mail.


Everything went great with my workout on Thursday with Laura and her physical therapy student, Miles. Like usual, we started working out on my neck muscles. I feel after the past few weeks, the muscles that keep my neck from falling forward seem to be a little stronger. After we finished all my exercises, Laura had a few new exercises for us to try on my neck muscles. The exercises were more isometric in nature. Laura took the yellow resistance band and put it on my forehead. While standing behind me, she pulled back and had me pull my head forward while she applied resistance. While my head was in the forward position, I had to slowly allow my head to go backward toward Laura. We did a total of ten repetitions. While I was doing these, I thought to myself that this exercise seemed very easy to do, but when I got to the fifth repetition, I could feel the muscle in my neck starting to quiver. The last five repetitions were difficult to do. Laura even made the comment that she could see the muscle in the back of my neck tightening up. After the first ten repetitions, and after resting for about fifteen seconds, we did another set of ten repetitions. After repeating this exercise for a total of twenty repetitions, we did the same exercises bending my neck to the left and to the right. Since the muscle in the back of my neck that controls my head from falling forward is still slightly underdeveloped, Laura is going to continue using the palm of her hand on this particular exercise. She told me that when this muscle starts to develop, we will then use the yellow resistance band on this exercise as well. As I start to build these muscles, we'll move to a stronger resistance band.


I did a podcast this past week were I discussed the importance of adding SMA to the newborn screening list in all fifty states. While there are a few states that have already started screening for SMA on newborn testing, there are many more who have yet to follow suit. Adding a disease to this newborn screening list s a difficult process, and even though SMA has been added to the national list of diseases to screen for in newborns, it must also be adopted by each individual state. Surprisingly, some states are going to be extremely slow in adding this to their list. Please take time out of your day to listen to this very important podcast because this subject is very dear to my heart. Click HERE to listen to my podcast.


In this week’s video, I discuss the link between circadian rhythms and spinal muscular atrophy. Circadian rhythms are the way that our body reacts biologically over a 24-hour time period. These circadian rhythms not only control how we sleep, they also control how we feel for the entirety of the day, from the time that we wake up in the morning, until the time that we go to bed at night. A recent study was conducted where researchers linked the negative side effects of circadian rhythms to those of us who have spinal muscular atrophy. Some of the results that these researchers found during their study were quite surprising.  Click HERE to view my video.


I hope that all of you have had fantastic week and I hope your upcoming week will be better than the previous. Do something for yourself this upcoming week that is going to make you a better person. Until next Sunday, God bless.

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Monday, July 16. Through Sunday, July 22 - Overall, this past week went pretty well. I finished all of the repairs on my house with regards to getting my new roof put on and getting all of the gutters replaced around the house. It's amazing how much damage a five-minute hailstorm and cause. The only thing I have left to do is to get my fence power washed and re-stained. After that, Humpty Dumpty should be back together again.


Since I had contractors all over my house on Thursday, I went to workout with Laura on Tuesday. Her student therapist, Miles, worked with me on all of my exercises. Laura was there with us, but she let Miles go through all of the exercises, to give her some experience on how to work with me. We usually work out for about an hour, and it seems this hour goes by so quickly. It felt like we had barely started when it was time for me to leave. I guess concentrating on everything that I'm doing makes the time go by much quicker. My energy level and my physical strength have been fantastic. It's been nearly two weeks since my last treatment. I didn't see any decline in my physical strength and conditioning during the four months after my first maintenance dose, which actually surprised me because I thought I would possibly lose a little bit of my energy due to the fact that it had been four months since my last injection. I'm excited to see what the next four months have in store for me. I hope that my conditioning will continue to increase since my last injection a few weeks ago. One of the biggest changes that I've seen has been in my breathing. I'm able to speak louder and longer without becoming winded. My friends and family have even told me that they noticed quite a change in the last four months. They can all tell that my breathing is better and they even mentioned that I'm speaking in longer sentences now. I thought I was seeing improvement, but when your family and friends tell you that they see improvements, it confirms my notions that my treatments and my physical therapy have probably put a halt to the progression of my disease. I've stated many times that if this treatment doesn't do anything for me but to stop the overall decline, and to level me off where I will not get any worse, then I will count my blessings and thank God for everything that has occurred. I did a podcast the other day where I talk about some of the changes that I've noticed regarding my physical condition. This was one of the questions I answered, and I also answered another question regarding whether or not all of the frustrations that I went through while getting approval to begin my treatments was actually worth everything that I went through. Click HERE to listen to this podcast.


In this week’s video, I’m introducing everyone to a company by the name of PTC, and I’m also discussing their oral therapeutic that they call RG7916. PTC’s goal, through RNA splicing, is to get the SMN2 gene to produce more functional SMN protein, so that those of us who are suffering from SMA cannot only sustain the muscle that we currently have, but to also build new muscle. RG7916, so far, has been well tolerated and has shown some promising results. Since those of us with SMA do not have the SMN1 gene, we rely on the SMN2 gene to provide our bodies with a protein that we need. With the development and possible success of PTC’s RG7916, those of us with SMA would have a brighter future. Click HERE to view my video.


I hope that everyone is had a fantastic week, and I hope your upcoming week will be better than the previous. Do something for yourself this upcoming week that's going to make you a better person. Until next Sunday, God bless.

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Monday, July 9, Through Sunday, July 15 - The last four months have felt like an eternity. It seems as if I was excited about my second maintenance steps the day after I received my first maintenance dose back in March. As I went back to UT Southwestern Medical Center, I was a little nervous that they would hit another nerve when doing my procedure. When they hit a nerve during my procedure in March, it really wasn't that bad, but it's still something that was in the back of my mind as I went into the hospital on Monday, July 9th. I'll explain more about this procedure a little further down in my journal entry. This week was also filled with contractors and repair work that I needed to accomplish after all of the hail damage that occurred over a month ago. Try doing YouTube videos, podcasts and flash briefings while having eight people running around on the top of your work with shovels and nail guns. Trying to do a thirty second podcast, hoping that one of the contractors won't fire their nail gun was extremely frustrating. While I knew that I couldn't go outside and asked them to be quiet, there was still something that I did quite a bit of consideration. Luckily, what was supposed to take two days, only took one, so I guess I should count my blessings.


When I went to workout with Laura this week, everything went smoothly. Since it had been four weeks since she reevaluated me, the first 20 minutes of our workout included going through all of these tests to check my progress. Overall, I did great. My range of motion on my side to side exercises improved, and I was able to lean forward in my chair and get back into a seated position by myself quite a bit further than I had done a month ago. My resistance strength also improved. This resistance from is when Laura tries to pull me back into my chair while I lean forward. This is a subjective test because there is nothing they can use to actually measure the amount of force that is being applied. Laura has me lean forward, and she puts her hands on my shoulders. As the test begins, she pulls me back into my chair and she can tell how much force she's having to use to get me back into a seated position. All of the other tests that we do, like my side to side exercises, and the exercise where I lean forward and pull myself back into a seated position, is measured in degrees. As I'm leaning forward, or from side to side, Laura measures the amount of degrees and then compares this with the numbers that she took from four weeks earlier. Overall, Laura and I were pleased with my results. In three weeks, we're going to start working on my legs. Much of this type of physical therapy will be stretching. I need to be able to straighten my legs out further than I'm currently able to do, and by stretching these muscles and ligaments, we're hoping to be able to gain more range of motion in my legs. I'm also hoping that we can stretch my hamstrings. If we can do this, this may help with some of the discomfort that I'm experiencing in my right leg.


My second maintenance dose injection went much better than I thought it would. As I stated earlier in my journal entry, I was somewhat nervous about going through this procedure because I was afraid they were going to hit another nerve like they did in March. Usually, it takes anywhere from thirty to forty-five minutes to complete one of my procedures. This time, from the time they started to the time that they took me back to my room, only took a total of fifteen minutes. They started the procedure at 1:05 PM, and I was back in my room by 1:25 PM. The student doctor that performed my procedure did a fantastic job. For those of you that don't know, UT Southwestern Medical Center is a teaching hospital. The student doctors are usually the ones who perform the procedures, but the attending physicians are always there next to them giving them pointers and advice, and making sure that everything is done properly. My second maintenance dose injection was probably the easiest procedure out of all of the procedures that I have done since I began my Spinraza injections. As I was getting ready to go to bed at 7:45 PM, I hit the proverbial brick wall. I started suffering from a migraine headache, and as the headache increased, I began getting nauseated to the point to where I thought I was going to throw up. After drinking a cup of black coffee, my headache began to get better. For the nausea, I took three tablets of activated charcoal. When activated charcoal gets into your stomach, the charcoal will absorb much of the acid in your stomach that is causing the nausea. After about two hours, I went to bed and I slept throughout the night. When I woke up on Tuesday, my headache and nausea were gone, and I didn't suffer any other side effects for the rest of the week.


In this week’s video, I'm giving everyone an update with regards to my second maintenance dose of Spinraza. On Monday, July 9, 2018, I went back to UT Southwestern Medical Center to receive my injection. I detail everything that happened to me during the procedure, and I also detail what happened when I hit the proverbial brick wall the evening after my injection. I give my suggestions as to what to do, if you find yourself in the same situation that I was in. While this was one of my most successful maintenance dose injections, I learned a valuable lesson on what to do when you hit a stumbling block regarding one of the side effects of the treatment. Click HERE to view my video.


I hope that this past week was good for you, and I hope this upcoming week is better than the previous. Do something for yourself this upcoming week, that's going to make you a better person, and do something for someone else this upcoming week, that will improve their life. Until next Sunday, God bless.

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Monday, July 2, Through Sunday, July 8 - What a fantastic and hectic week this was. The way it felt, there must have only been three days this week because I have no idea where the other four disappeared to. Late Sunday evening, one of my caregivers found out that her mother had recently passed, and she and her husband had to leave and go out of town for two days. Their daughter, who was my original caregiver, came over and stayed with me. As they were leaving on Monday morning, I was preparing for my photo shoot with the photographer for the publication that Health Monitor Magazine was going to write about me. The photo shoot was done by Kelsey Wilson Photography. Kelsey, along with her assistant, did a great job, and things couldn't have gone any better. She got to my house around 10 o'clock in the morning and we went over to my neighbors house to do the photo shoot. My neighbor has a million-dollar home sitting on the golf course side of the community that I live in. To say that his backyard has a better view than mine would be an understatement. Kelsey took around 200 shots with her camera and she said that the pictures should come out great. I got to view quite a few of the pictures on her camera and she said that after she goes through and corrects some of the lighting, they should be perfect for the article that Health Monitor Magazine was going to write. I couldn't believe how fast the hour went while doing this photo shoot with Kelsey, and I must say, she was a pleasure to work with. After I got home, I quickly noticed that I need to go to my dentist to get my teeth whitened. I sent her an email asking her if she could give "Snagglepuss" some whiter teeth in the pictures, and she wrote me back and said that she could accomplish this. I wrote her back and told her that she was my hero. Click HERE to go to Kelsey's website to not only view her photos, but also be amazed at the amount of large clients she is responsible for.


Last Thursday, I was unable to go to work out because Laura's physical therapy assistant (PTA) was on vacation that week and Laura was there literally by herself. Most physical therapists can work with multiple patients at the same time because they can get someone started doing an exercise and then while they are working, the therapist and go to another patient and help them. When Laura works with me, she spends the entire hour with me. Even though she tried to rearrange her schedule so that I could go in for my workout, we both agreed that it would be easier for her if I skipped a week and resumed my normal schedule this week. I was excited to go back and workout with her because I honestly enjoy my physical therapy sessions. For the next eight weeks, Laura is going to have a physical therapy student working alongside her. All physical therapy students go through a sixteen week hands-on work program before they take their boards to become certified. When I got there on Thursday, Laura and her student, Miles, worked out with me. Since it's been nearly four months since my last injection of Spinraza, I've been anxious to see how my body was going to react. I was somewhat scared that my energy level may fall since it's been nearly four months since my injection, but to my surprise, my energy level has maintained itself and I feel great. My workout went great. All of my muscles felt strong, except for my neck muscles. The muscle that keeps my head from falling forward is still extremely weak. The other muscles in my neck seem to be getting stronger. The muscle in my neck that keeps my head from falling forward is the muscle that will require quite a bit more attention. I know that this particular muscle will grow in strength over time, I just have to be patient and understand that it's going to take a longer period of time to get this muscle in the shape that I would like it to be. I've never really been a patient person, but since I have no control over this, I'm at the mercy of something that is far more powerful than my wishes.


This coming Monday, July 9th, I go back to UT Southwestern Medical Center for my second maintenance dose of Spinraza. The hospital called me on Thursday to confirm my appointment and I'm scheduled to go in at 11:30 in the morning for my bloodwork and urinalysis, and the procedure is scheduled for 1 o'clock in the afternoon. While I'm not necessarily nervous about the procedure, I am anxious to get there so I can receive the protein that my body is craving. I guess you could say that I'm kinda like a junkie looking for a fix, only the fix that I'm looking for is completely legal. I have so much to be thankful for, and if you are also receiving your injections, I hope and pray that you are as thankful as I am.


In this week’s video, I’m giving my subscribers and followers an update with regards to what I’m doing now, and what I have planned over the next couple of weeks. With the amount of work that I had to do for the 2018 Annual Cure SMA Conference, I thought that this would be a good time to do a video updating what is happening in my life. I was recently asked to be a part of a magazine article that was going to be written in Health Monitor Magazine, and I also discuss the photo shoot that I went through with a professional photographer. Along with this, I also discuss my upcoming maintenance dose injection of Spinraza. I am scheduled to receive my maintenance doses every April, July and November of each year, and I’m excited about going into the hospital this coming Monday, July 9th to receive my next injection.  Click HERE to view my video.


In next Sunday's video, I will be giving everyone an update as to how my injection went, and I will also share my bloodwork and urinalysis results in the video, and on my website. I hope everyone had a fantastic week, and I hope that the following week will be better than the previous. Do something for yourself this upcoming week that's going to make you a better person. Until next Sunday, God bless.

Monthly Journal - August (2018)

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Monday, August 27 Through Sunday, September 2 - It seemed as if this week would never come to an end. Why is it some weeks go by so quickly while others make you think that you’re doing nothing except watching the grass grow in the paint dry? This was one of those weeks where I honestly thought I saw the grass growing. While the watched pot may never boil, when you actually see grass grow, you know that you have too much time on your hand. My job with BioNews Services is keeping me busy, and I really have nothing to complain about other than the fact that I wasn’t able to go to physical therapy this week. Maybe that’s the reason why I feel the way I do right now.


My normal caregivers were supposed to return on Wednesday evening from their family vacation, but they called me on Monday evening and told me that they had an option to stay another two days and since they got a good price, they decided to do that. Unfortunately, this meant that I wasn’t able to go to physical therapy on Thursday with Laura. Overall, it’s not that big of a deal because I know that my caregivers are enjoying their vacation and they definitely deserve it. I called and spoke to Laura’s receptionist and told her that I was going to be quite busy the following week, so I will go in and work out on Tuesday of next week instead of next Thursday so that I can make sure that I get my workout in. Laura was on vacation this week as well this past week, so I would’ve had to work out with her new physical therapist that they just hired. I’m sure that I’m going to be working out with her in the future anyway, so missing one week is not that big of a deal. But, I will tell you that I definitely can tell a difference in the weeks that I do not work out versus all the times that I do. My energy level this week is been fantastic, I just miss working out with Laura and being able to burn off some of my excess energy. Hopefully, beginning next week, I’ll be able to make my work out each and every week for the foreseeable future. When I go to work out on Tuesday, Laura and her therapists will transfer me out of my chair like they did in my previous work out. I’m going to try to sit unassisted without any back or side support for over ten minutes during my work out on Tuesday. I know that I can do it as long as I can get seated in a comfortable position. After sitting unassisted, Laura and her new therapist will begin stretching my legs out and trying to stretch the hamstrings and quadriceps along with my feet and toes. As I said in my previous journal entry, stretching my legs out actually feels good, but when they do my feet and my toes, this is not so fun. I have a high tolerance for pain, but my feet and toes bring me to my pain threshold rather quickly. Be listening on Tuesday around 1:30 in the afternoon. (CST) If you hear  somebody screaming like a cat, it’s going to be me. I know I need to exercise my feet and my toes, but these are so sensitive that it drives me crazy.


In this week’s video, I’m changing the format as to how my future videos will appear on my YouTube channel. I’m going to try to make my videos a little bit more freestyle and less scripted in hopes to make my videos more enjoyable to watch. While I’ll still do videos containing PowerPoint presentations, some of my videos will just be me speaking to you one-on-one at a more personal level. This gives me the ability to answer some of your questions that you send me in my email and it also allows me to just be myself. In this week’s video I’m answering two questions from users. The first question deals with why I feel we are all lucky to be living in the United States and have the ability to take the Spinraza treatments. In the second question, I answer why I am so adamant and enthusiastic about taking physical therapy. Another issue that I discuss is more on the personal level. Someone very close to me told me that I don’t smile enough in my videos, and I address this with a little humor and the promise that I’ll try to smile more in my future episodes. Click HERE to view my video.


I hope everyone had a fantastic week and I hope your upcoming week is better than the previous. Do something for yourself this upcoming week that's going to make you a better person. Until next Sunday, God bless. 

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Monday, August 20, Through Sunday, August 26 - This was one of those weeks that never seemed to end. My new job with BioNews Services is keeping me busy, and since my caregivers are on vacation until Wednesday of next week, having two other caregivers in my house has actually gone a little smoother that I first anticipated. I’m usually in my office from 7:30 in the morning until about 9:00 at night, and much of this time is spent working on videos, podcasts and other activities related to my new job. I’m very thankful to have this new job because he gives me a chance to work out of my house without having to travel each and every day and fight the terrible traffic on our highways. Overall, I would say that this is been a pretty good week. 


I usually work out on Thursdays, but since my caregivers are going on vacation this week, I had to rearrange my workout with Laura. On Monday, Laura and her team of therapists transferred me for my wheelchair to one of the adjustable tables that they have. I was somewhat nervous about transferring from my wheelchair, but everything went much better than I thought it would. After transferring me to the table, Laura raised the table and put a box under my feet where my legs were level and my feet were flat on the box. Since this was the first time that I tried to balance myself without any back or side support, my nerves were racing. Laura was in front of me and Miles, her student therapist, was standing behind me. With a positioning strap around my chest, Laura and Miles got me in position and slowly started releasing their hold on me. I believe all three of us were somewhat surprised at how quickly I gained my balance and I was able to sit unassisted for over two minutes. While sitting unassisted, I leaned to my left and to my right and I was able to recover my balance and get back to a neutral position without any assistance. While the table was padded, it’s nothing like my wheelchair, and I began to get uncomfortable after about two or three minutes sitting up on the table. After about two minutes sitting unassisted, I began to get a little tired. Laura and Miles told me that for the first try, lasting two minutes was actually very good. Laura’s goals are to have me sit unassisted for up to ten to fifteen minutes each therapy session. I told Laura that keeping my balance was easier than I thought it would be, and I said that I knew that I could get up to that ten minute to fifteen minute mark in a short amount of time if I could just find a comfortable position. After sitting unassisted, Laura and Miles laid me down on my back and began stretching my legs. After removing my shoes, and as Laura began stretching my right leg, I think she was pleased that she could stretch my leg out as much as she did. As Laura worked on my right leg and Miles worked on my left leg, they also flexed my feet back is much as possible. Along with flexing my feet, they also flexed my toes to try to get as much movement in them as possible. Stretching my legs actually felt very good, but when they were working on my toes, this was very uncomfortable. Those of us who sit in wheelchairs for the majority of our day, have very sensitive feet. My feet are probably the most sensitive part on my body because let’s face it, they don’t always get a lot of attention. After stretching my legs, feet and toes, Laura and Miles transferred me back to my wheelchair, and Laura and I began our exercises on my neck muscles. After I got home from work out, I was a little bit tender in my right leg and hip but as the day went on, this tenderness went away. I was a little bit nervous that I would be uncomfortable in bed on Monday evening, but my hips and my legs felt great. On Tuesday morning when I woke up, quite a bit of the swelling in my feet had reduced, and while there was still some swelling, it was a marked improvement. I believe all of the stretching and the exercises that we did on Monday helped with this. This was Miles last week to be working with Laura, but Laura did hire another certified physical therapist that will be working with her full-time. When I go to work out on Thursday, August 30, Laura will be on vacation and I will be working out with her new physical therapist. I will resume working out with Laura the following week when she returns from vacation.


In this week’s video, I’m going to be giving you my tips on hiring a caregiver. Whether you are hiring a caregiver to be with you for a few hours each day, or if you are hiring a live-in caregiver that will be with you 24 hours a day, this is something that most of those who are affected by SMA will have to face at one time or another in our life. This process can be extremely frustrating, and my presentation will give you some tips on what you need to look for when you are searching for that one particular person that will help you in your day-to-day living. While these tips are the ones that I use when searching for my caregiver, please keep in mind that everyone will have different requirements, and this is something that you need to sit down and discuss with your family and friends before starting this process.  Click HERE to view my video.


I hope everyone had a fantastic week and I hope your upcoming week is better than the previous. Do something for yourself this upcoming week that's going to make you a better person. Until next Sunday, God bless.

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Monday, August, 13, Through Sunday, August 19 - This past week went by too quickly for me. Now that I'm working full time for BioNews Services, I seem to be much busier, which makes the days go by faster. We finally received over 3 inches of rain this past week, which was greatly appreciated by my yard and shrubs. I was finally able to turn the irrigation system off for a few days, which really makes me happy because free water means that I'm saving money on my water bill. Anytime I can save money on my bills, it definitely puts a smile on my face.


When I went to workout with Laura on Thursday, she told me that she received the slide bord, which will allow her to transfer me for my wheelchair to her adjustable table. This table will automatically move up and down, which will allow her to slide me out of my wheelchair onto the table so that we can begin stretching my hamstrings and quadriceps. This is very exciting for me because I am now going to be able to stretch these muscles which may help in some of the discomfort that I'm feeling in my right hip and leg. Last week, when I went to workout, Laura placed the palm of her hand under my left and right hamstrings and had me push with my legs to see if the hamstrings were activating like they should. She said that she did feel both of the hamstrings tighten and relax while I was pushing. She also did the same thing on the quadriceps which are the muscles on the top part of the leg. I'm not sure if we will use neuromuscular electronic stimulation on these muscles as of yet, but this will be determined when I go to work out with her next week. I know that these new exercises are going to be uncomfortable to go through at first, but Laura's hopes and my hopes are that these muscles will begin to responded to the stretching and the exercises that we are going to be doing. Laura did tell me that I would probably have some sore muscles in the beginning, but this doesn't bother me at all because I know that if these muscles are sore, we're doing something to them that could eventually help me gain some strength in my legs which could also benefit me regarding improving my balance while sitting in my wheelchair. My caregivers are going on vacation next week, so I will go to workout on Monday before they leave so that I can get my workout accomplished for next week.


In this week’s video, I’m discussing exon 7, and how this affects those of us with SMA. This is a topic that not many individuals know about, yet, this is one of the key reasons why those of us who have SMA are battling this devastating disease. While there is not a lot of information readily available on the Internet regarding exon 7, researchers and scientists have known about this for quite some time, and this is a subject that I believe all of us need to be more aware of. This is one of those topics that is better explained by someone who has a better working definition as to how exon 7 works, so I also provide a link to a YouTube video that goes into greater detail on not only exon 7, and why this information is so important for us to know about.  Click HERE to view my video, and click HERE to view the other video detailing exactly how exon 7 works.


I hope everyone had a fantastic week and I hope your upcoming week is better than the previous. Do something for yourself this upcoming week that's going to make you a better person. Until next Sunday, God bless.

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Monday, August 6, Through Sunday, August 12 - After nearly 3 weeks of temperatures above 100°, we are finally receiving some beneficial rains will and some lower temperatures. I love having a green yard, but when it doesn't rain for nearly a month, having to run my sprinkler system twice a week to keep the yard green becomes a very expensive undertaking. Along with an extremely expensive water bill, my electricity bill would gag a horse. Having two air-conditioners is nice, but when both of them run 24 hours a day for a couple of weeks, my electric meter spins so fast that it looks like it's going to rip away from the wall.


On Thursday, when I went to workout with Laura, the first thing that she did was to reevaluate me for my insurance. My valuation went well, and I improved on the majority of my tests. I actually declined on the test where I had to lean forward as far as I could and reposition myself back into a seated position. Laura told me that even though I may have not been scored as high as I did on my previous evaluation, she told me that it was probably due to the fact that I had been tired the entire day. I didn't sleep much the previous night, so she told me not to worry about my results. After the reevaluation, we did all my exercises. The neck exercise that I'm having difficulty with, where Laura pushes my head forward with the palm of her hand, went much better this week than in the previous weeks. Laura commented that she was having to push harder this week than she had in the past, and I was able to resist her for a longer period of time. She was extremely pleased with these results, and so was I. In the next couple of weeks, Laura is going to start working on some of the muscles in my legs. She's going to stretch out my hamstrings and my quadriceps, and we're going to start exercising these muscles in hopes to improve both conditioning and strength. Most able-bodied individuals have a 0° bend in their legs when they stretch their legs out all the way. I have a -31° bend in my right leg, and a -41° bend in my left leg. By doing some isometric stretches on my hamstrings and my quadriceps, Laura is hoping to improve the amount of negative bend in my legs. After stretching these muscles out, Laura or her PTA, Emily, will do some deep tissue massage on these muscles to try to loosen them up. This new part of my therapy where we are going to work on my legs is not going to be as fun as the exercises that I'm doing now, but I know that stretching these leg muscles out will help me. I guess the old adage of "no pain, no gain" will be something that I have to put up with as best as I can.


In this week’s video, I’m going to discuss the link between spinal muscular atrophy and ketoacidosis. A case report finds spinal muscular atrophy patients can be more prone to a life-threatening metabolic imbalance called ketoacidosis, which causes the blood to become acidic. Ketones normally are produced during periods of sugar shortage (fasting, starvation, intense exercise) as the body starts to break down fat for energy. If ketones are produced and accumulate too quickly in the blood and urine, they become toxic and eventually lethal. When ketones are produced, they are consumed mostly by muscle fibers. In people with reduced muscle mass, such as in SMA, ketone consumption is lower, promoting ketoacidosis. In addition, muscle atrophy reduces the supply of amino acids (building blocks of proteins) as a source of energy and the body shifts toward the breakdown of fats and producing ketones. Click HERE to view my video.


I hope everyone had a fantastic week and I hope your upcoming week is better than the previous. Do something for yourself this upcoming week that's going to make you a better person. Until next Sunday, God bless

Monthly Journal - September (2018)

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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.