Daily Journal - Dec. 2017

Sunday, Dec. 31, 2017 - I spent the majority of the day working on my newest video. In this video, I explained some of the changes that I will be making with regards to my website and my videos that I'm producing on my YouTube channel. I also explain the minor setback that I had with regards to the strength level in my arms. Today, my arms are feeling very strong and I feel that I have regained all of the strength that I felt that I had lost in the last three to four days. I finished editing my video and uploaded it to my YouTube channel. One other change that I am making is that I will no longer be doing a daily journal entry on my website. Beginning Monday, January 1, 2018, I will be doing a weekly journal entry that will comprise all of my notes for the past week. I will also be producing one video per week that will be uploaded to my YouTube channel every Sunday no later than 6 PM Central Standard Time. Click HERE to view my video.

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Saturday, Dec. 30, 2017 - When I woke up this morning, my arms were feeling a little stronger. While they're not at the level that they were about a week ago with regards to overall strength, I do feel a little better today. I started back on my high-protein diet yesterday and I'm thinking that the reason why I experienced this small setback in my strength was because I wasn't eating like I should. The only muscle weakness that I experienced was in my heart. Other parts of my body like my core strengths were still strong.

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Friday, Dec. 29, 2017 - Over the past three or four days, I have noticed that my arms are still just a little weaker than normal. I can admit that my diet in my sleep pattern have changed over the past week due to everything going on in my house with regards to the Christmas season. Everything should return to normal over the weekend and I'm hoping that the strength in my arms will return. I spent the majority of the day running some errands and taking care of a few things that I needed to do before the cold weather sets in.

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Thursday, Dec. 28, 2017 - When I woke up this morning, I got everything ready to go to my workout session with Laura. Unfortunately, when I went to getting my van, the battery had died. I had to call and reschedule my workout session for Tuesday and Thursday of next week. These will be my last two workout sessions for this prescription and I will need to contact my doctor and have her right me another prescription so that I can continue my workouts with Laura at her facility.

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Wednesday, Dec. 27, 2017 - My physical therapist Laura requested that I do not work out the day before my workout with her because she wants to make sure that my muscles have had time to recover from any of the workouts that I'm doing at my house. Since I've taken a few days off from working out, I decided not to work out today to be sure that I would be ready to go tomorrow. I spent the majority of the day catching up on some movies that I've been wanting to watch and also catching up on some paperwork that I need to get done before the end of the year.

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Tuesday, Dec. 26, 2017 - When I woke up this morning, I felt a little weak in my arms. I noticed that throughout the day, I was having a little more difficulty doing some of the things that I was easily able to do a couple of days before. I'm sure that this is just a temporary setback because I know that I have not been sleeping as much as I had been. I'm also taking a few days off from my workout just so my muscles to relax.

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Monday, Dec. 25, 2017 - Christmas Day has many special memories for me, some good and some sad. I remember when I was growing up, we would spend Christmas Eve with my fathers side of the family and we would spend Christmas Day with my mothers side of the family. Christmas Eve, we would eat dinner and open Christmas presents. Everyone in would crowd into my grandmothers small apartment family room and after we opened our presence, it would look like a war zone with wrapping paper scattered all throughout the house. We would then open our Christmas Day present at my other grandparents house and we would eat dinner with them. Unfortunately, both of my parents are now deceased and Christmas takes on a much different meaning now than it did whenever I was a child. While I miss both of my parents, my Christian beliefs tells me that they are needed a wonderful place and eventually, when my chores are finished on this earth, we will all be together again. I spent the majority of the day with my caregivers family and talking to friends on the phone who I went to school with and who I grew up with. Christmas Day was a special day for me as I hope it was for each and every one of you reading my journal.

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Sunday, Dec. 24, 2017 - As most of you know, Sundays are usually spent vegetating in front of the television watching football. I'm writing this journal entry a little early in the day because I have friends coming over later tonight. I usually do not work out during the weekend at home and this gives my muscles plenty of time to recover from all of the exercising that I'm doing during the week. While I haven't experienced any more physical changes with regards to muscle strength, I will say that my stamina and my muscle strength or maintaining throughout the day and my energy level is through the roof. For those of you that are reading my journal, I wish each and every one of you a very Merry Christmas and I hope that you have time to spend it with your family and friends.

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Saturday, Dec. 23, 2017 - Today was an extremely quiet day around my house. I had a chance to catch up with a few of my friends that I went to college with and since I wasn't going to do any physical therapy, I had a chance to catch up on some of my computer work as well. This was probably one of the quietest days that I had in weeks and I thoroughly enjoyed it.

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Friday, Dec. 22, 2017 - After running a few errands in the morning, I came home and did my physical therapy and had lunch. After eating lunch, I finished all of the editing on my video and uploaded it to my YouTube channel and also updated my website. Click HERE to view my video.

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Thursday, Dec. 21, 2017 - Today, I went to workout with my physical therapist Laura at her facility. She allowed me to bring my GoPro camera so that I could film the exercises that we do with the resistance bands. I have moved from the yellow resistance they to the red resistance band while working on my lats and obliques, and I'm using the green resistance band while working my abdominal and back muscles. After we finished our work out, Laura told me that instead of using the green resistance band on my abdominal and back muscles, we will start using the blue resistance band for these exercises beginning next week. After working out, I went home and spent the majority of the day editing the video that I took while working out with Laura. This video will be available no later than Friday, December 22 on my YouTube channel and on my website.

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Wednesday, Dec. 20, 2017 - I woke up a little earlier this morning so that I could get ready to go to the hospital to be with Scott and his mother as he went through his fourth and final loading dose. I got there just after he was admitted and was able to spend about 45 minutes with Scott before he went in for his procedure. The procedure went well and he was back in his room within 30 minutes. After laying on his back for an hour, he was allowed to get back in his chair and go home. The rest of my day was spent doing some things around the house that needed to get done before I go to physical therapy tomorrow.

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Tuesday, Dec. 19, 2017 - After working out at home, my day was pretty uneventful. Tomorrow, I'm going to be going to UTSW - William P. Clements Junior University Hospital to be with Scott as he goes through his fourth and final loading dose. I also want to extend my congratulations to Scott for being named as one of the Ambassadors for this area. Scott will be doing quite a bit of public speaking for Biogen, especially when they have seminars. Scott is a great guy and I know that he will do a fantastic job.

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Monday, Dec. 18, 2017 - Today, after working out at home, I called and spoke to my physical therapist Laura. A few weeks ago, she asked me if I would like to bring my GoPro and video the exercises that I'm doing with the resistance bands. When I spoke to her today, I asked her if I could still do this, and she told me that it would be okay with her. She has an examination room set up where she does most of her evaluations on new patients, and she said that we could use this room. Any time that I videotape, I have to take into account the privacy of her other patients that may be present at her facility. Using this examination room will give us the privacy that we need. I will show the exercises that we do with the resistance bands when we work out my abdominal, lats, back and oblique muscles. I plan on doing this on Thursday when I go in to work out with Laura, and I will try to post this video on my YouTube channel no later than Friday, December 23.

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Sunday, Dec. 17, 2017 - If you've been keeping up with my journal, you know exactly what I did today. (FOOTBALL - FOOTBALL - FOOTBALL) While watching football, I edited Video #120, and uploaded it to my YouTube channel. In this video, I discuss two very important questions that were posed to me by a couple of my subscribers to my YouTube channel. One question dealt with the amount of protein that I'm getting in my diet and whether or not this would negatively impact my urinalysis that I do before each injection. The second question dealt with the amount of protein that was in my cerebral spinal fluid, or CSF. I requested to get the answers from my doctor's nurse via email, and when I get the answers from her, I will share this information in my upcoming video, scheduled for Wednesday of next week.

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Saturday, Dec. 16, 2017 - I spent the majority of the day working on my upcoming video that will be uploaded to my YouTube channel on Sunday, December 17. After working on my video, I spent the rest of the day paying bills and doing everything that's necessary to keep the electricity on and a roof over my head. I also ordered another case of my Muscle Milk protein drinks from Amazon. I noticed that the flavor that I enjoy, Knockout Chocolate, went up in price by nearly $10. It's funny how prices change within a matter of just one week. I also noticed that they changed suppliers, which may be the reason for the price change. I plan on calling the supplier that I got my protein drink from last time to see if I can order it directly from them instead of ordering it through Amazon. Just because I love shopping on Amazon doesn't mean that I'm going to throw away my money.

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Friday, Dec. 15, 2017 - Today was a restful day around the house. It seems that the last four days have been extremely busy, so a quiet day around the house was exactly what I needed. I received a couple of emails from two of my subscribers to my YouTube channel asking me to do a video of some of the exercises that I do with Laura while I am at her facility. Next Thursday, December 21, I will take my GoPro with me so that I can video the exercises that we do while working on my abdominal, back and oblique muscles. The video that I will shoot will be included in one of my upcoming YouTube episodes, and this should give a good demonstration to those of you who want to see how I am using these exercises to build these particular muscles.


  • NOTE:  Under no circumstances am I saying that everybody should be doing these exercises. Before starting any exercise routine, be sure to check with your doctor to make sure that you are cleared for these types of exercises.

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Thursday, Dec. 14, 2017 - Today has been one of those days where I have a feeling that I'm going to go to bed with sore muscles. I went to workout today with Laura at her facility. Last week, she said that we were going to move to a higher resistance elastic band that would give me more of a workout on my core muscles. Instead of using the yellow band, we were going to use the red one. We started working the obliques using the red elastic band. I would lean over to one side as far as I could, then Laura would began pulling my body toward her and I had to resist coming back to a seated position too quickly. We did this for both the left and the right oblique muscles. We then started working on my abdominal muscles were she would sit in front of me and pull me toward her and then sit behind me and pulled me back into a seated position. I was able to do a good job with this higher resistance elastic band, so Laura told me that she wanted to use even a higher resistance band. She put the red resistance band down and picked up a green resistance band. She told me that my abdominal muscles were a little stronger than she had first thought, so the green elastic resistance band would be used while doing my crunches. While Laura was sitting behind me, she applied resistance, then I had to do three sets of twenty crunches. By the time I finished all sixty crunches, I could feel my abdominal muscles burning. After we finished all of my exercises, Laura cut me a red resistance band and a green resistance band that I could use while doing my exercises at home during the rest of the week. I'm actually quite excited at the fact that my abdominal muscles are as strong as they are. This was one of the hardest workouts I've had to date, and it was fantastic.

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Wednesday, Dec. 13, 2017 - Knowing that I had to wake up early to go to the hospital with Kimber, I shaved, showered and went to bed at around 8 PM on Tuesday. I watched television till 11 PM, then finally fell asleep for about 45 minutes. I knew I wasn't going to get any more sleep, or if I did, I would fall so far asleep that I would never wake up on time, so I decided to get up a little after 12 AM. I went into my home office and worked on some items that I needed to finish up on and Kimber came over around 3:15 AM. We got to the hospital shortly before her mom and dad and sister arrived and we were able to see Carol before and during the process where they were prepping her for surgery. Carol's hip replacement went very well and after they took her to her room, we made sure that she was okay, then Kimber and I came home. The rest of the day was basically spent vegetating in front of my computer and television trying to stay awake. I knew that if I took a nap, even for a short amount of time, I would never fall asleep. My mother told me that when I was two years old, she quit making me take naps. She said if I slept for 30 or 45 minutes, I wouldn't sleep that evening. I guess I'm still the same now. Surprisingly, I was amazed at how much energy I had for only having 45 minutes of sleep in the last 48 hours. I also noticed that my arm strength was very good throughout the day. Usually, when I don't get any sleep, my muscles are usually pretty tired, so this little bit of extra energy that I had today makes me think that the Spinraza treatments and the physical therapy are helping me.

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Tuesday, Dec. 12, 2017 - After spending countless hours redesigning the journal entry page of my website, I finally got it the way I wanted. I guess the inadvertent deletion of some of my journal gave me a reason to redesign it. My journal used to be one long entry, now, it is broken up by month, which should make it easier for anyone visiting my page to view. I also redesigned it by year. On January 1, I will create a new page for my journal entries for 2018. I had chicken salad for lunch and one of my Muscle Milk's. My protein intake each day is well over the 50 gram recommended allowance. Tomorrow, I will go with Kimber to Baylor Hospital in downtown Dallas to be with her sister while their mother, Carol, has her new prosthetic hip implanted. Carol was like a second mother to me while growing up and her two daughters are like my sisters. We probably won't do anything but sit around the hospital and wait for Carol to come out surgery, but just being there with them makes me feel better. This will also give me a chance to spend time with their father Larry. Like Carol, Larry was a very important part of my life while growing up and I love spending time with him.

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Monday, Dec. 11, 2017 - The receptionist for my physical therapist called me today and told me that my insurance approved another four visits with Laura. Due to the upcoming holiday schedule, I had to set my physical therapy on Thursdays instead of on Tuesdays. Like the last round of physical therapy, I will see Laura once a week to do my physical therapy at her facility, then I will do physical therapy at home for the remaining four days of my five day a week workout schedule. By working out with Laura once a week for a total of four weeks, this gives me plenty of time to possibly show good improvement which will maybe help me get more physical therapy sessions as we move on to different muscle groups. We are currently working on my abdominal and back muscles and after another four weeks, I should be able to show good improvements. I've only been working on my abdominal and back muscles for the past two weeks, but can already tell a little bit of difference. I feel like I'm able to lean forward in my wheelchair with more confidence in my ability to get myself back up to a seated position. I also completed editing and uploading my newest video to my YouTube channel. In this video, I share the one word that best sums up what I am thankful for in the year 2017. Click HERE to view my video.

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Sunday, Dec. 10, 2017 - If you have with my journal over the past few weeks, you know that Sunday's are spent in front of the television watching football for the majority of the day. My strength level has been great, especially after finally recovering from my chest cold. All the coughing and sneezing I did really made my ribs sore, but now, I am back to my old obnoxious self.

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Saturday, Dec. 9, 2017 - Most of the day today was spent running errands and catching up on some things that I needed to take care of before the end of the week. While I was out, I indulged by going to Whataburger and eating a double meat cheeseburger. I know this goes against everything that Laura, my physical therapist, wants me to do, but every once in a while I have to cheat on my diet to maintain some kind of mental sanity. I thought I would feel bad about doing this, but after eating my double meat cheeseburger, I felt pretty good. I will go back on my high-protein diet tomorrow and will try to make amends for my sin.

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Friday, Dec. 8, 2017 - In my journal entry for yesterday, I stated that I spent most of the day updating my website with current information. While updating my daily journal, I noticed that my internet service provider for my website truncated 12 days off the beginning of my journal in September. I spent the majority of the day speaking with Go Daddy, who is the host of my website about recovering this lost data. After spending two hours on the phone, I realized that their pages are not unlimited in size, so now I will have to spend time breaking up my journal entries into months. After doing my physical therapy at home, I started on this process which is going to take me quite a while to accomplish. My physical strength and stamina remains strong and I finally recovered from my chest cold that I have been battling for the last two weeks.

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Thursday, Dec. 7, 2017 - Today, I spent the majority of the day working on my website and getting all of my pages updated with current information. I'm finding that updating the website and editing the videos, along with updating my other social media sites is becoming more and more difficult with regards to time. While updating all of the sites may take quite a bit of time, I'm getting a lot of really good feedback on my website and through my email, so I know that the time that I'm taking to keep all of the sites updated is at least helping. My goal with all of my sites is to provide information on not only how I'm doing, but to also help others that are going through the same thing that I am.

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Wednesday, Dec. 6, 2017 - I spent the majority of today working on video #118. In this video, I detail all the exercises I'm doing with Laura. These exercises are working my core muscles, like my abdominal, lats and back muscles. In this video, I show pictures of Laura and I doing resistance training for three of my core exercises, and I further explained the other four exercises we do so that everyone will have an idea as to what muscle groups I am working on and how Laura and I are performing these exercises. Laura was gracious enough to allow me to take pictures while we were working out and I greatly appreciate her willingness to do this. I will try to do more videos like this as I work out so that I can discuss not only how I'm doing, but also to give demonstrations on how to do these exercises so that you can do the same with your physical therapist. Click HERE to view my video.

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Tuesday, Dec. 5, 2017 - Today, I went and worked out with Laura at her facility. I asked if it would be okay to take pictures of some of our exercises so that it would give those who subscribe to my YouTube channel and those who follow me on Twitter a chance to see how we are doing the exercises that are working my abdominal, lats and back muscles. These pictures can be found in the PHOTO GALLERY section of my website. Click HERE to view these pictures. My workouts with Laura, while physically challenging, are really a lot of fun. Laura has a great attitude and she really is the best in her field when it comes to physical and occupational therapy. For some reason, a lot of people think that physical therapy has to be a painful, unpleasant experience. For me, physical therapy gives me a chance to work out muscles that I haven't really been able to utilize until now. Some people may not like doing physical therapy, but if I had my way, I would do it 24 hours a day. After working out with Laura, I went home and had baked salmon with lemon pepper, along with baked zucchini and squash. A few weeks ago, Laura put me on a high-protein diet, and to be honest with you, I'm not suffering one bit.

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Monday, Dec. 4, 2017 - Laura had asked me not to work out on Mondays, because I would work out with her starting on Tuesdays and I could do the rest of my therapy at home through the remainder of the week. Kimber came over around 8 o'clock in the morning and we went to take her mother to her two doctor appointments that she had scheduled. Carol had an artificial hip implanted about six years ago. A couple of months ago, she got sick and part of the infection of her illness went down and attacked her artificial hip. About a month ago, she had to have her hip removed and doctors put spacers in the area where her hip would have gone so that they could allow the infection to heal as she took her antibiotics. After taking Carol to her doctor appointments, they were able to reschedule her surgery so that they could reinstall a new hip. While this took the majority of the day, it was well worth the effort because Carol felt a lot better and it was good to know that she no longer was going to have to suffer through more time of being confined to a wheelchair and to a bed.

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Sunday, Dec 3, 2017 - While sitting at my desk on Saturday, I did some of the exercises that Laura asked me to do. These exercises include tensing my abdominal muscle for one minute, quick breathing exercises, chin tucks and shoulder shrugs. When I am tensing my abdominal muscle for one minute, I am taking short breaths while keeping the abdominal muscle as tight as possible. The quick breathing exercises involved taking short, quick breaths, as fast as I can for one minute. This makes the abdominal muscle fire on and off repeatedly. Tensing my abdominal muscle and performing the quick breathing exercise really does a number on my abdominal muscle, and I can feel this for the majority of the day. I could also feel the effects of these exercises for the first part of today. The rest of the day was a typical Sunday. I sat in front of the television and watched football and really didn't do anything else for the majority of the day. Tomorrow, I have to wake up early and go with Kimber to take her mother to her two doctor appointments.

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Saturday, Dec. 2, 2017 - Today, I had to get out of the house and runs some errands. I have a Toyota Sienna minivan, and this minivan has been modified with a wheelchair ramp so that I can get my wheelchair in the van. While I'm physically unable to drive myself, this van has been modified so that others can drive it. Laura and I are working on my abdominal and my back muscles during this round of physical therapy. We have been doing this for the last couple of weeks and I have noticed that my balance has definitely improved. When getting out of the van and rolling down the ramp, it was easy for me to lose my balance. Since working on my back and abdominal muscles, I've noticed that I'm able to sit back in my chair and keep my balance while going down the ramp. This is definitely an improvement over the last month, and I feel more stable getting in and out of my minivan, especially when parking at an angle.

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Friday, Dec. 1, 2017 - This morning when I woke up, I could tell that I had been working out on Thursday. My abdominal muscles and my back muscles were not sore, but I could definitely tell that I had exercised these muscles. Some people may complain about having sore muscles after a workout, but not me. Feeling these muscles during the day let me know that what Laura and I are doing is working. As the day progressed, and as I used these muscles during the day, the stiffness subsided. I spent the majority of the day working on the computer and doing my physical therapy on my arms.

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Top of Dec. 2017 Journal

Daily Journal - Nov. 2017

Thursday, Nov. 30, 2017 - I woke up this morning excited because I'm going to be starting a new round of therapy with Laura. This is actually the therapy that I wanted to start with, but I knew that I needed to begin with my arms so that I could start working them out as soon as possible. Now that I am able to exercise these muscles by myself, it's now time to start working on my core muscles. My abs, lats and back muscles are very important to me because these are the muscles that help me sit up straight in my chair and also help me keep my balance. When I went to workout today, Laura had a new set of exercises for me and we got started as soon as I got there. She had me do some quick breathing exercises to work on my stomach muscles, then we began some resistance training with the elastic bands. She would put the elastic band around my chest and sit behind me and pull against me as I tried to lean forward to pull against the elastic band. She would then put the elastic band behind my back and sit in front of me and pull me forward while I leaned back and applied resistance. We did two rounds of each of these exercises in reps of 30. After this we did the same type of exercises on my left and right side. I found these exercises to be much more challenging, but I also found these to be much more rewarding. I could actually feel the resistance against my body and I was able to push through and accomplish these exercises with good success. After we finished for the day, I asked Laura how she thought I had done. She told me that I did better than she expected, and I think she was pleasantly surprised at the results. We are currently using a yellow elastic band. The yellow band is the one that provides the least resistance. I'm sure that we will move to a higher resistance band as my therapy progresses. These exercises, while challenging, were a lot of fun because I can see that I'm going to make good progress in the coming months. I can also tell that Laura was excited about it to. I will try to take some pictures next week when I go in that I can share with everyone on my website.

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Wednesday, Nov. 29, 2017 - I've never been one to take a lot of pills, but I will say that the prescription that the doctor gave me at the hospital last Sunday is really improved my coughing and congestion, and the over-the-counter antihistamine that I'm taking has helped tremendously with my nose. The only downside to the antihistamine is that it dries everything up in your body, which has caused me to have a lot of dry skin, especially on my bald head. I feel like a snake shedding his skin, but I guess the cure is worse than the disease. I felt pretty normal today with regards to my health and I know that by the end of the week, I should be back to my old self. Physical therapy is going great and I go in tomorrow to work with Laura at her facility. We will begin working my core muscles which will include my abs and my back muscles. As I stated in an earlier journal entry, we will not be using electronic stimulation on these muscles because my core muscles are already developed to the point to where we can use resistance training. Most of the resistance training will be done with the elastic band and probably some other exercises that Laura will think of.

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Tuesday, Nov. 28, 2017 - Finally, after three or four days, I'm finally starting to feel somewhat normal with regards to my breathing. My coughing has subsided and is no longer bothering me. My plans today are to do my physical therapy, eat a good lunch, drink my Muscle Milk and relax as much as possible. I will also start working on my next video which I will go into further detail about in tomorrow's journal entry. My physical strength and my stamina did really well during my sickness. Even though I didn't feel very good, my muscles felt good.

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Monday, Nov. 27, 2017 - Last night was the first night that I actually got any sleep in the last three days. My coughing had finally subsided to the point to where it was not waking me up, and I was finally able to get a lot of my congestion cleared for my lungs, which made it much easier for me to breathe. The rest of the day went pretty smooth and I spent the majority of my day sitting in front of my computer catching up on work that I had not been able to do for the last two or three days. My next physical therapy with Laura at her facility will be on Thursday, November 30. I will begin my workout today at home and I will work out for the next three days here at my house and then again on Friday to complete my five physical therapies for this week. One day I work on my upper body core strength, and the next day, I work on my abs and my back muscles. I also plan on going outside for a while today to get some fresh air. The weather here in Irving is absolutely beautiful, so I better take advantage of these days before the dead of winter sets in.

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Sunday, Nov. 26, 2017 - This morning, when I woke up, my chest congestion and my cough were worse than yesterday. I tried to make it through the majority of the morning hours, but my ribs were starting to hurt because I was coughing so much. With this being said, I wanted to make sure that this was not turning in to pneumonia or the flu, so I went to Baylor Scott and White Hospital in Irving so that I could get checked out. I went through the emergency room and when I told the admissions nurse my symptoms, she immediately took me back into a room and before I knew it, they were taking me into an examination room so the doctors could start running their tests. A chest x-ray was taken and the doctor told me that there was no pneumonia that he could tell in my upper and lower lobes of my lungs. The doctor said he was pretty positive that pneumonia was not the culprit. After the chest x-ray, nurses came in and swabbed my nose with a Q-tip, and 30 minutes later, the Dr. came back into the room and told me that the test came back negative which ruled out the flu. Since my lungs looked clear and there was no positive test for the flu, doctors told me that what I had was just a severe chest cold. The doctor gave me a prescription for Tessalon Pearls for the cough and recommended Sudafed for the drainage. After getting the prescription filled and going home and taking both of these pills, I felt better before I went to bed and I slept much better throughout the night.

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Saturday, Nov. 25, 2017 - When I woke up this morning, my congestion in my chest had gotten worse and my nose was running like a marathon runner. Today was the first day in years that I actually had to lay down and rest during the day because I coughed so much my ribs were hurting. I would be fine for five minutes, then I would start coughing and my nose would start running and it would do this for fifteen to twenty minutes. Luckily, I was able to complete my video and I was able to upload it to my YouTube channel without any problems. Like I said in yesterday's journal entry, this video deals with some of the changes that my body has been going through since I started the Spinraza treatments and my physical therapy. I try my best to keep my videos as short as possible, but sometimes, it takes me a while to explain everything in enough detail. Click HERE to view my video.

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Friday, Nov. 24, 2017 - I spent the majority of the day working on my next video that I will upload on Saturday. I have received numerous emails inquiring about changes that I've noticed since I started my treatments. While the majority of these changes are small in nature, even small changes are a major accomplishment at this time in my life. I went into this treatment knowing that I wasn't going to just get up and walk, but I am surprised at the changes in my muscle tone and strength. The video that I will produce and upload tomorrow will go into detail about this. When I woke up this morning, I had a severe sore throat and I had some congestion in my upper respiratory. Unfortunately, I did not get a flu shot this year, so I'm hoping and praying that it's not the flu or early onset pneumonia. As the day went on, my energy level dropped so I went to bed early.

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Thursday, Nov. 23, 2017 - Today, I spent the entire day on my computer updating my website. I added a new portion to the home page where I detail all the updates that have happened in the last couple of days. Now, when users log into my website, they can immediately see any changes that I've made to my website. I'm also working on a new page where I go into detail about the high-protein foods that I'm going to be eating. Unfortunately, this page will only be formatted for my website. Users that are wanting to view this on their smart phones or their tablets will not be able to use it because the data will probably be jumbled together. I am working on a solution to this problem, but until I can come up with one, you can view it directly from the website only. I resume my normal workout routine tomorrow, and will not only work on my normal muscle groups that I've been working on, I will also work on my abs and my back muscles as well. I will also begin working on my next video which will go into detail about changes that have occurred to my body since starting the Spinraza treatment. This video should be available either Saturday or Sunday of this week.

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Wednesday, Nov. 22, 2017 - When I woke up this morning, I was excited about going to physical therapy because Laura was going to start working with me on my abs and my back muscles. When I arrived at her facility, we went ahead and worked on the normal muscle groups that we had been working on since the beginning of my therapy, but after we finished, she went ahead and did her evaluation on my abs and my back muscles to see exactly how the therapy was going to progress. She decided that the neuromuscular electrical stimulation was not going to be necessary for these muscles since they were already developed. Instead of using the E-stem, (electrical stimulation), Laura decided that we would use elastic band therapy. Elastic band therapy provides resistance training and she thinks that this will be the best method to build these muscles. She began by having me leaning forward as far as possible without losing my balance. Once I got to the point to where I was losing my balance, she knew where to start. She began by standing in front of me and putting the elastic band around my back at about shoulder high. As she pulled on the elastic band to pull me forward, she had me resist by pulling back and trying to sit further back in my chair to try to keep her from pulling me forward. After this, she stood behind me and put the elastic band at about shoulder high around the front of my chest and had me leaning forward trying to resist her from pulling me back toward the back rest of my chair. This gave her a good evaluation of what my strength level currently is, which will give her a baseline that she can work off of to try to improve these two muscle groups. She then told me to go ahead and do my electrical stimulation therapy at home and that starting next week, we would focus all of our attention on these new muscle groups. Since I have another two physical therapy sessions left with Laura on this current prescription, she will go ahead and reevaluate me in two weeks and send in another request to my insurance to try to get more therapy so that we can work my abs and my back muscles. I updated my YouTube channel with a new video where I discuss the importance of being proactive versus reactive when it comes to scheduling our maintenance doses of Spinraza. Everyone on this treatment will be receiving three maintenance doses every year for the rest of our lives. With this being said, I'm stressing the importance of getting these three injections scheduled for the coming year to make sure that everybody stays on schedule with regards to their treatments. Click HERE to view my video.

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Tuesday, Nov. 21, 2017 - Today, I spent the majority of the day working with a friend of mine. While working with him on his website, I neglected some of the work that I needed to do on my website, so after I finished with his website, I spent the remainder of the day working on my site to get it updated. By the end of this week, I'm hoping to have another page added to my website where I list many of the foods that I plan on eating while I am on a high-protein diet. Eating high-protein foods and drinking a Muscle Milk is really helping me not only feel better, I actually think my muscles are beginning to respond to the increase in protein that I'm giving them. My neuromuscular electronic stimulation device has worked really well over the past week, but one downside to using it is that the batteries only seem to last about one week before needing to be replaced. It takes a 9 V battery, so I need to make sure that I keep plenty of them on hand to make sure that I can continue my therapy.

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Monday, Nov. 20, 2017 - Usually, toward the end of each month, I try to get all my bills paid. After doing my physical therapy, I spent the majority of the day organizing my bills and getting them ready to be paid by the end of this week. Unfortunately, creditors do not understand that my physical therapy needs to come first, so with this in mind, I need to satisfy their need to take all of my money. Since I didn't have anything on my calendar for the day, I spent much of it catching up on some household chores that needed to get done before the cold weather finally sets in. I love the wintertime because my air-conditioning is not running and I'm actually saving money, but I also hate wintertime because I'm not a cold weather person. Either way, the cold weather gives me a good excuse to stay inside. I'm still feeling strong and my strength level, like I've said in the past, seems to be holding out throughout the day without the muscles fatiguing. Tomorrow, when I go to physical therapy, we are planning on working the same muscle groups that we've been working since the beginning of my therapy, but we will also start working on my abs and my back muscles. I'm excited to see what kind of physical therapy Laura has planned for me regarding these muscle groups.

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Sunday, Nov. 19, 2017 - When it comes to Sunday's, I usually try to spend the majority of the day watching football and just trying to relax around the house. My physical therapy for the week went extremely well and while I only worked out one time with Laura at her facility, I still managed to do my physical therapy at home without any problems. My caregiver's father is staying with me now for the next month or two, and since he has extensive backgrounds in coaching and sports, he is extremely helpful in working with me during my physical therapy at home. I attempted to make some changes on my calendar in my website, and for some reason, it is not removing some of my deleted appointments. I contacted my Internet service provider and they are working on the problem, so please be patient if you are looking at my calendar page for information.

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Saturday, Nov. 18, 2017 - Today, I knew that I did not have to work out, so I spent the majority of the day resting around the house. My caregiver and her mother are up in Tennessee taking care of her grandfather and stepgrandmother, so my caregiver's father and I went and picked up Kimber and Christine's mother from a physical rehabilitation center where she was recovering from an infection in her hip. For the next few weeks, Carol will be in a wheelchair and since I have a van that is handicap accessible, we went and picked her up and took her back home where she could finish her recovery. After returning home, I spent the majority of the day working on my video where I updated all of my subscribers and followers that doctors found blood in my cerebral spinal fluid (CSF). While I'm sure that this is not anything that I should be worried about, I did send an email to my doctor asking her what her thoughts were. I will update my test result page on my website once I hear back from my doctor either Monday or Tuesday of next week. Click HERE to view the video that I did regarding the blood that was found in my cerebral spinal fluid, along with an update on my most recent test results after my fourth and final loading dose of Spinraza.

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Friday, Nov. 17, 2017 - This week was the first week where I worked out a total of four days instead of my normal three. Beginning next week, I will work out on Monday through Friday, then I will rest on Saturday and Sunday. Working out five days consecutive, and stressing these muscles as much as possible, should provide me a good workout, and with two days of rest, my muscles should be able to fully recover. We made a beef brisket with onions in the crockpot, which turned out to be extremely tender and had a fantastic flavor. I also had my Muscle Milk with 40 g of protein, a small portion of brown and wild rice and a small serving of guacamole. The beef brisket is a good source of protein and the brown and wild rice is a good source of grain. The guacamole is a good source of potasium. I usually try to eat a banana in the morning, but since I knew I was going to eat guacamole for lunch, I decided to forgo the banana until tomorrow. I was concerned about working out four days in a row, but even after working out today, my muscles felt terrific and there was absolutely zero fatigue in my arms. I cannot stress how good I feel. To be completely honest, I don't think I've ever felt this good in my life. The only thing that I have noticed that I would consider to be a small negative, would be that I have a little congestion. Scott, one of my subscribers, made a comment to me the other day and he said that this could be one of the side effects of the treatment. After thinking about it, I would probably agree with him because my congestion started once I began my treatments back in September. My congestion disappeared two weeks after my third loading dose. Since there was a total of four weeks between my third and my fourth loading dose, it makes me think that the congestion will probably last couple of weeks. I'll be able to better determine if this is the cause of the congestion by the end of next week. If my congestion goes away, then I will know that my treatment may be causing this. The congestion itself is not anything serious because I am able to clear my lungs without too much difficulty. If this is the only setback that I have during my treatments, I will consider myself lucky and blessed.

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Thursday, Nov. 16, 2017 - Since today was going to be my second day to workout at home, I started the day out by eating a banana and doing my exercises. I didn't realize how much power my little neuromuscular electronic stimulation device had, but I am truly impressed with how it works so far. Along with using my NMES unit, I'm now using the elastic band to work my biceps on both arms, and I feel I'm getting a better workout by using the elastic band because I can see how far I'm stretching them, which gives me a little bit of feedback on how I'm doing. I found a good deal on Amazon for my 40 g Muscle Milk. Click HERE if you would like to try some for yourself. After working out, I finished editing the video I did for my YouTube channel. One of my subscribers asked me why Spinraza needed to be at room temperature before doctors could use it, so I did a quick video with a PowerPoint presentation giving everyone two critical points that we all need to remember as we go in for our treatments. Click HERE to view my video. REMEMBER - You can also find my six most recently produced videos on my YOUTUBE VLOGS page.

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Wednesday, Nov. 15, 2017 - Today was my first day to workout at home. After getting my NMES set up, I was able to complete my entire workout in about one hour and ten minutes. I did all of the exercises that Laura and I do at her facility, it just took me a little longer because I worked my biceps individually instead of working them together like I do the other muscle groups. My electrical stimulation unit worked great. When I use it on my left bicep and tricep, I have to turn it up all the way to get a good workout because these muscles are so underdeveloped. It takes a lot of stimulation on these particular muscles. The muscles on my right side, I only have to turn the unit up about halfway to get an effective workout. During my time with Laura working out at her facility, she gave me enough feedback to where I know how to do these exercises correctly, so I feel comfortable doing them at home. The day went by quickly, but my muscles felt fantastic for the entire day. It's been a few weeks since my muscles have shown any kind of fatigue after my workout, which tells me that my muscles are starting to gain a little bit of strength and they are able to recover from the workouts quicker than before. I also think that by drinking a 40 g Muscle Milk after my workout, this helps the muscle regenerate a little quicker after being stressed from the electronic stimulation and the workout that I'm giving them. Overall, I am extremely satisfied with my results and I look forward to seeing more results in the near future.

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Tuesday, Nov. 14, 2017 - Today was one of those days that I needed something to make me laugh. We all have days where we feel like we're being pulled in too many directions. It seems that when I was working a full-time job, teaching college at night and going to school to finish my MBA, I had enough spare time to do whatever I wanted. Now that I'm retired, I can't seem to find enough spare time in the day to finish everything that I want to do. When I was growing up, we seemed to have had a better grasp of time management than the millennial's that are growing up today. One of the funniest videos that I've seen on YouTube discussed how millennial's are growing up in today's times. I normally would not do this, but if you want to see a video that will make you smile, click HERE to view it. After I watched this video, my day was instantly better. I went to physical therapy today and worked out with Laura. Since I am only going to be working out with Laura on Tuesdays for the next four weeks, she told me that she wanted me to start working out four days a week at home. She said that since my muscles are starting to develop a little bit more, working out five days a week should give me enough time to possibly get them in shape so when she reevaluates me in four weeks, we will be able to show significant improvement. Starting tomorrow, I will be working out Monday through Friday. While this may seem to be a lot, it's only for about an hour and a half each day. In the grand scheme of things, this is not a lot to ask for a chance to rebuild my future. I produced a video today discussing my fourth and final loading dose of Spinraza. Click HERE to view my video.

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Monday, Nov. 13, 2017 - When I woke up this morning, I began working on the intro to my video updating everybody on my fourth and final loading dose. I woke up this morning excited at the fact that I am now finishing all of my loading doses and that I can now start focusing my attention on my physical therapy. My appointment was at 2 PM and I arrived at the hospital about an hour early. After checking in through the admissions department, they immediately came and took me to my room and began the bloodwork and urinalysis. After getting me out of my wheelchair and putting me into my bed, the technicians came down and took me to the fluoroscopy suites. The nurse told me that they were going to leave me in the bed for a little bit so that they could call the pharmacy and order the Spinraza. I was somewhat surprised at the fact that they had not physically received the medication before they brought me to the fluoroscopy suites. I told her that this medication had to be at room temperature before they could injected it into my body. She called and spoke to the pharmacist and they told her that they didn't know anything about this particular policy. When the doctor came into the room, the nurse informed him that I had said that the medication needed to be at room temperature, so we checked the FDA website and found out that what I said was correct. After retrieving the Spinraza from the pharmacy, and by the time they got me positioned on the fluoroscopy table, the medication had already warmed up to room temperature. The procedure itself went great. As a matter of fact, this procedure went better than the previous three. The only thing that I felt was when they deadened my back with the lidocaine. The procedure took about 20 minutes and I was back in my room where I had to lay flat on my back for one hour. I was already tired from the procedure, so I took this time to shut my eyes to take a quick power nap. After an hour, they came in and told me that I could go home. The only thing that they were concerned about was that my blood pressure was a little low, but they felt that it was low because I was a little bit dehydrated and that once I ate something, my blood pressure should be fine. The rest of the day, I spent working on the video that I will be uploading either later tonight or first thing tomorrow.

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Sunday, Nov. 12, 2017 - Usually, on Sunday, I vegetate in front of the television and watch football the majority of the day. The sport I enjoy most is baseball, so when baseball season comes to an end, I'm forced to watch semi educated but extremely strong and overpaid people make more money in one day than I did in two years. After listening to a few of them being interviewed on television, it makes me thankful that they were physically gifted, because I think if some of these guys had to depend on their mental intellect to get by, their lives would be completely different, and not in a good way. I'm enjoying my high-protein diet that I'm on because it gives me a great excuse to eat meat. Someone once told me that I should be a vegetarian and I told them that I would become a vegetarian when cows started growing on trees. I have noticed a little bit of improvement in my left arm over the last couple of days. I'm able to extend my left arm further than I have in quite a while and I'm not sure if this is because I'm getting stronger or if it's just because I'm focusing more on using my left arm than I have in a long time. Either way, it's nice to see movement and a little more range of motion. Tomorrow, I go into the hospital for my fourth and final loading dose. After tomorrow, I can focus more of my attention on my physical therapy and hopefully, I can start building these muscles so that I can start doing work for myself and I can quit being so reliant on other people. While most of us know that we are not going to be able to get up and walk after our treatments, we need to set acceptable expectations for what we want to accomplish. My goal is to be able to do more for myself, which means me being able to use my arms and my hands. I know that with a lot of hard work, dedication and proper physical therapy, I can reach these goals if given enough time.

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Saturday, Nov. 11, 2017 - Today was a quiet day around the house. I spent the majority of the day working on the computer and paying bills. The good thing about paying bills electronically is that you know that your bills are being paid on time. The bad part about paying bills electronically is that you can immediately see the money being taken out of your account, which for me, causes a severe form of depression. I've always wondered why money is so hard to make, yet, so easy to spend. While sitting at my desk, I worked on my hand strength by squeezing a therapy ball. After doing this for quite a while, my arms were sore because I didn't realize how long I had been exercising. It's funny that when you're working out and you don't realize that you are doing it, time gets away from you. My energy level and my stamina is still great and I'm thrilled with the fact that my muscles are not fatiguing as the day moves on.

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Friday, Nov. 10, 2017 - After running numerous errands this morning, I came home and vegetated in front of my television and computer like a zombie for the entire day. My therapist recommended that I go with a high protein diet, so I went to Whataburger and ordered a double meat cheeseburger. I know that if Laura found out what I did, she would probably be disappointed in me, but in my defense, I did order a double meat cheeseburger, which means that I consumed double the protein of a regular single meat cheeseburger. (My logic may be a little screwed up, but in my head, my reasoning makes all the sense in the world.) I'm anxiously awaiting Monday because I will finish my fourth and final loading dose. In my earlier journal entries, I stated that the swelling in my feet and ankles had diminished. While I went through my first three loading doses, the swelling had practically disappeared. I've noticed that the swelling is coming back a little, but since there is a four week waiting period between loading dose number three and our final loading dose, I'm assuming that this is the reason why some of the swelling has returned. I would be willing to bet that the swelling will disappear again after I receive my fourth loading dose this coming Monday, November 13. My energy level and stamina has been extremely strong throughout the last couple of weeks. To be honest, I don't think I've felt this good in many years. I've also noticed that my breathing seems to be stronger because I'm not getting as winded as I used to. Before my treatments, I would get winded while I worked on my YouTube videos or if I had to talk a long time on the phone. Now, I feel my breath control and my breathing seems to be stronger and more regulated. Whether or not this has anything to do with my Spinraza treatments is yet to be determined, but I do know that I'm feeling stronger, and for this, I am extremely grateful.

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Thursday, Nov. 9, 2017 - Today was a day that was spent running errands and working on my next video. I thought about running these errands last week when it was warm outside, but I waited too long and was somewhat shocked at how cold it was outside today. I've never been a cold weather person. I've stated numerous times that I would rather sweat than shiver any day of the week. I got a call yesterday from my physical therapist's office. They told me that my insurance only agreed to four more physical therapy sessions. I thought about calling my insurance company and complaining because they told me last week that they would agree to twelve more sessions if my doctor wrote that number on her prescription. I guess I will just have to deal with what they gave me and then request more after these have been completed. My therapist wants to string these therapy sessions out for one full month, so I will go in and workout at her facility on Tuesday every week for the next four weeks, and I will do my work out on Monday and Thursday here at my house. Since I have my neuromuscular electrical stimulation device, (NMES), I can perform the same exercises at home that I can with Laura at her workout center. Maybe, by stringing these therapy sessions out for one month, I will be able to show more of a measurable improvement the next time that Laura reevaluates me. If I show some measurable improvement over the next month, my insurance company may allow me to do more physical therapy. They may also come back and say that since I had measurable improvement, I no longer need to take physical therapy with Laura at her facility. Either way, it's a crapshoot and the only thing I can do is to roll the dice and hope for the best. I uploaded a new video to my YouTube channel today where I give all my subscribers an update on Barbara, one of my long time Youtube subscribers. Barbara completed her first loading dose of Spinraza on Wednesday, November 8. I went to the hospital to support Barbara and it was a pleasure meeting her. She has a great attitude and a great disposition, and I know that her next loading doses will be successful. Click HERE to view my video.

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Wednesday, Nov. 8, 2017 - Today, I went to UTSW - Bill Clements Memorial Hospital to support one of my subscribers by the name of Barbara. Barbara has been a subscriber to my YouTube channel since the very beginning, and today, she successfully completed her first loading dose of Spinraza. I arrived at the hospital approximately 30 minutes before she was scheduled to go back for her injection. It was nearly 45 minutes later when they came and took her down to the fluoroscopy suites. When she came back, doctors were going to have to take her to the CT department because they were unable to successfully locate an opening to perform her injection. Fortunately, during the CT scan, they were able to locate an opening in her spinal column and they successfully administered her first loading dose. I really enjoyed going up to the hospital and meeting Barbara face-to-face. When you get to meet someone in person, especially when you've been speaking with them for nearly eight months, it's very exciting. Barbara has an outstanding attitude and spirit, and I know that she will be successful in the rest of her loading doses. When I got home, I received a call from the receptionist were I go for my physical therapy. She told me that my insurance contacted them and told them that instead of giving me twelve more PT sessions, they would agree to four. I will call my insurance company tomorrow to discuss this because they told me over the phone, the other day when I contacted them, that they would agree to all twelve of these sessions if my doctor specifically requested this amount on her prescription. I would rather deal with a two-year-old throwing a temper tantrum versus having to deal with insurance companies and their crazy ways of taking care of their patients. Either way, I will get this worked out. My new schedule for my physical therapy will be that I will work out at home on Mondays and Thursdays using my NMES and elastic bands, then on Tuesdays, I will go in and work out with Laura using her equipment. This way, we can make these four sessions last one month and hopefully, I can show measurable improvement to justify more physical therapy.

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Tuesday, Nov. 7, 2017 - Today was a lazy day around the house. Since Laura had to re-file another prescription with my insurance company so that I could get more therapy sessions, I probably will not be going to work out until possibly Thursday. I spent the day working on my website and posting my newest video. It's amazing how much time it takes to post a video and then update all of my other social media sites. While it's fun to do, the amount of work that it takes to accomplish all of these tasks seems to be growing exponentially. Tomorrow, I am going to UTSW to be with another one of my subscribers as she goes through her first loading dose of Spinraza. We have been communicating with each other via email for the past four to five months. When she told me that she was going in for her first loading dose, I asked if she would mind if I came up there to give her some support. She wrote me back and told me that she would enjoy meeting me and that she would appreciate my company. I'm finding a lot of enjoyment going to the hospital and providing support to those who are going through the same thing that I am. We all know that this therapy could be a game changing experience for each one of us, and getting the opportunity to meet other individuals who are going through this therapy with me, gives me encouragement and makes me feel as if my YouTube channel is bringing me closer to some of these amazing people. I published my newest video to my YouTube channel earlier today. Click HERE to view my video.

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Monday, Nov. 6, 2017 - Today when I woke up, I felt great. I did some work around the house that needed to get done and then I went to my physical therapy session with Laura. When I got there, Laura had to do her reevaluation of me so that she could send in another prescription that my doctor gave for more therapy sessions. This reevaluation only covered my last four physical therapy sessions, so there was little improvement that we could show. After finishing all of the paperwork, Laura told me that since my right bicep was definitely getting stronger, we were not going to use electrical stimulation on this muscle anymore. We would continue doing electrical stimulation on my left side because those muscles are still underdeveloped. She measured out a 5 foot long piece of resistance banding material and tied a loop to one end so I could put my hand through it. The other end of the banding material she put on the floor and stood on it and had me do bicep curls using this resistance band. Even though I was unable to complete a full bicep curl, using this type of motion provided resistance for the muscle and she thought that this would be the best way to better develop this particular muscle. The electrical stimulation is only going to be used for those muscles that are underdeveloped, and when they start to develop more tone and shape, we will begin using resistance band training on those muscles as well. Overall, my workout went great, and I can definitely tell that the resistance band therapy will give me a much better overall workout on those targeted muscles. When I got home from my workout, I drank one of my Muscle Milks, which gave me 40 g of protein. When you are building muscle, you definitely need to increase the amount of protein that your body is receiving. The Muscle Milk that I am drinking provides me with 300 calories and 40 g of protein. My arms were tired from the workout, but about one hour after I drank this protein shake, my muscles were no longer fatigued and I felt great for the rest of the day. I have used these protein shakes twice, and each time, I can definitely tell a difference in how the muscles feel before I drank it, versus after I drink it.

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Sunday, Nov. 5, 2017 - Today when I woke up, I realized that I had nothing scheduled on my calendar and I could actually spend the day sitting in front of my computer and my television relaxing. It's amazing how much entertainment you can get out of watching numerous football games and surfing the Internet. My phone only rang three times during the entire day, so I had plenty of time to enjoy a little time off and be in a somewhat vegetative state. My strength level and stamina was fantastic throughout the entire day. Since my therapist Laura put me on a high protein diet, I enjoyed a little home cooking from one of the local restaurants in my area. Meatloaf, mashed potatoes with gravy, pinto beans, okra and collard greens were the choices that I made, and I can say that without reservation, the items that I chose were exactly what my body was not only craving, it was also exactly what it needed. Going through this treatment is not just receiving the injections, it is also a lifestyle that you have to change with regards to your eating habits and the way that you go about your normal activities. Even when I'm sitting at my desk, I find myself using the muscles that I'm trying to build in my physical therapy more and more each day. When I have a little idle time, I will squeeze my therapy ball to try to improve my hand strength and I will also flex my biceps, triceps and chest muscles just to keep them active and to let them know that I'm thinking about them. Just receiving the injections is not enough for me because I know that these other activities, such as working out and eating healthier, will play an important role to how much success I will see.

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Saturday, Nov. 4, 2017 - Today was a great day. My overall muscle strength and stamina this week have been phenomenal. After drinking my protein shake after my workout on Thursday, my muscles have felt strong and I have experienced no weakness since my last therapy session. My doctor wrote another prescription for twelve more physical therapy sessions with Laura, and this prescription will be turned in to my insurance company on Monday, November 6. Dealing with insurance companies can be a frustrating venture. I will produce a video on dealing with insurance companies next week. I spent the majority of today working on my website and rebuilding the YOUTUBE VLOGS page. I redesigned this page to make it shorter and easier to view, and I also added a section where my subscribers and followers can go directly to the different playlists that I have on my YouTube channel.

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Friday, Nov. 3, 2017 - In yesterday's journal entry, I told everyone that I started drinking a protein shake after my last workout on Thursday. This morning when I woke up, my muscles felt great and they did not fatigue at all during the entire day. Earlier today, I produced another YouTube video where I give everyone an update regarding a friend of mine by the name of Scott, who I've spoken about in previous videos, as he completed his second loading dose earlier this week. I also discuss an update regarding my neuromuscular electrical stimulation device (NMES), along with an update regarding some of the changes that I did to my website. Click HERE to view my video.

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Thursday, Nov. 2, 2017 - Today, I will be completing my second full week of three continuous workouts with my therapist Laura. My physical therapy is going great, but I will say that my muscles are extremely tired after I finish. While I know that this is normal, I'm hoping that the muscles will start to rebuild quicker as time goes on. I received my neuromuscular electronic stimulation device in the mail on Wednesday, so I took it with me when I went to see Laura. While I was working on my triceps, Laura took my new NMES unit out of the box and put everything together. We decided to use my new NMES while I did the work out on my chest muscles. To our surprise, this NMES unit that I purchased worked very well. Even though this unit is small in size, it packs quite a wallop. Unfortunately, I'm not able to use it to work my muscles out in alternating fashion, but I can work out one side at a time and then turned one channel off and turn the other channel on to work out the other side of the muscle group. Either way, I should still be able to continue my physical therapy at home once I finish working out with Laura at her facility. We are both going to fight as hard as we can to get more sessions together, because we are starting to see some good results. Laura put me on a high-protein diet and she wants me to start drinking a protein shake after I finish my work out. She uses a product called Muscle Milk. On the way home from therapy, we stopped at Walgreens and picked one up for me to drink when I got home. I will say that my muscles in my arms were very tired after going through my third workout for the week. About two hours after I drank this protein shake, which contains 34 g of protein, my muscles felt a lot better and I was able to use my right arm without any problems for the rest of the day. I'm not sure if this was a natural result that would have occurred whether or not I drank a protein shake, or if this was due to the protein shake, which may have helped the muscle to recover from being stressed. Either way, I felt great and I'm hoping that these type of results continue.

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Wednesday, Nov. 1, 2017 - MORNING NOTES: Today, is a day of celebration. Scott, one of my subscribers, is going in for his second loading dose this morning. Unfortunately, I was unable to attend his first loading dose because of my physical therapy, but today, I'm going to meet him at the hospital as he undergoes his second dose of Spinraza. I'm excited about going to the hospital to be with Scott today because over the course of the last five months, he and I have become good friends. Having someone as a friend who is also going through the same thing that you are, makes the friendship more meaningful because I believe both of us truly understand each other. AFTERNOON NOTES: Another reason why I said that today is a day of celebration is because I'm going out late this afternoon for a church service where we will celebrate the life of the person who I called my best friend for nearly 30 years. Erick Potts and I became great friends while we were in college working on our bachelors degrees at the University of Texas at Dallas, where we were both members of a business fraternity on campus. Erick was there for me when both of my parents passed away and was the type of friend who would always be there for you through good and bad times. Likewise, I was there for him when he needed a shoulder. At the age of 49, and one day after he and his fiancée set their wedding date, Erick passed away from a massive heart attack. Tonight, his fiancée and I will go to a remembrance ceremony where we, along with most of his family and friends, will celebrate his wonderful life. I was extremely fortunate to have this individual in my life as long as I did. At the end of this journal entry, I will tell everyone the two questions that he always asked me when we spoke. To this day, I still think of these two questions and I hope everyone reading my journal update will take these two questions to heart and remember to practice these questions in your life.

  1. What have you done today that was good for yourself?
  2. What have you done today that was good for somebody else?

Top of Nov. 2017 Journal

Daily Journal - Oct. 2017

Tuesday, Oct. 31, 2017 - When I woke up this morning, I got a good look at myself in the mirror. Noticing that I had not had a haircut in nearly 2 months damn near scared me to death. Before I went to physical therapy, I told myself that I would get a haircut so I wouldn't scare everyone. After getting my hair cut, I went directly to my physical therapy to start working out. I was somewhat nervous about going to physical therapy since I had such a bad day yesterday. As soon as I started working out with Laura, the only thing that I can say is what a difference a day makes. Yesterday I had no energy whatsoever, and today, my energy level was much better. Laura and I started working on my biceps and triceps. I wanted to start with these muscles because these were the two muscles that were so weak and fatigued yesterday. When we started, I immediately noticed, along with Laura, that the muscles had had time to restore themselves, and the entire workout went well. Laura told me that there would be days where my body would not want to respond to any of the therapy that I'm putting it through, but keeping these muscles active and forcing them to respond, even when they don't want to, is what we needed to do. After my physical therapy, I came home and began updating my website. The rest of the day went well. My energy level and stamina was strong throughout the day and I definitely felt much better than I did the day before.

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Monday, Oct. 30, 2017 - When I woke up this morning, I felt as if every ounce of energy had been depleted for my body. Even though I slept pretty good through the night, my energy level was extremely low and just motivating myself to get out of bed and start the day became a task of its own. After getting dressed and getting in my wheelchair, I felt a little better, but the lack of energy persisted through the morning hours. I was even to the point where I was considering not going to my physical therapy, but then I remembered that this was the first day in nearly a month and a half that I felt drained and exhausted. As I was working out with my therapist, I could feel that I just didn't have as much energy as I had previously while working out, and even Laura commented that I seemed a little fatigued and just not myself. While Laura was doing my electrical stimulation therapy on my chest and my arm muscles, there was a different sensation that I was feeling, and this sensation, while not painful, seemed to be a little more uncomfortable than normal. Surprisingly, I made it through my work out, and after Laura did my stretching exercises, my muscles seemed to relax a little bit. After I got home from working out, my strength level and my energy seemed to get a little better and it slowly improved throughout the day. I guess this was just one of those days where my body was telling me that it needed to slow down and rest a bit. I'm sure that with a good night sleep, I will probably feel much better tomorrow and maybe my workout will be a little more tolerable.

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Sunday, Oct. 29, 2017 - With the north winds still blowing over 25 miles an hour, I decided that today was another day that I would stay at home and relax. I ordered a squeeze ball from Amazon so that I could work on my hand and finger strength. The ball is very pliable and easy to use. Click HERE to be taken to the Amazon site where I purchased this therapy ball. I have also added a link to this, and the other four therapy balls that are available, to the link section of my web site. I'm excited about going to physical therapy tomorrow. Hopefully, over the next couple of weeks, I can get my insurance to approve more therapy sessions so I can continue on building some muscle tone and strength in my arms and chest.

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Saturday, Oct. 28, 2017 - Today was a day that I just wanted to stay in the house. The temperature outside is in the low 50s and the wind is out of the north, blowing between 20 and 25 mph. I am definitely not a cold weather person. I'm the type of person that would rather sweat than shiver any day of the week. I'm looking forward to resuming my physical therapy on Monday. If everything goes right, I will go on Monday, Tuesday and Thursday, which will give me my second week of three consecutive workouts. Even though Laura did her reevaluation of my muscle strength last week, I know that if I can get back into the routine of three workouts per week for a total of four weeks, I know that I will improve my numbers. The only thing that I'm battling right now is a small head cold which is now moved into my nose. I may not have legs that can run, but I can tell you with the utmost certainty that if my nose had legs, it would win the gold medal in the 100 m dash. I used to tease my mother because she had allergies that would make her nose run all the time. This may be karma biting me in the butt for making fun of my mother.

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Friday, Oct. 27, 2017 - Today was a relatively quiet day. My physical therapist put in a request for eighteen more sessions with my insurance company, and I found out today that they only approved four. My insurance company told me that if my doctor filled out another prescription and requested twelve visits on the prescription, they would approve it. I contacted my doctors nurse via email today and she told me that my doctor just signed the prescription and they faxed it to my physical therapist. Laura will send this prescription back to my insurance company on Monday and hopefully, they will approve either the twelve that my doctor requested on the prescription, or eight, subtracting the four that they had already given me. Either way, I'm hoping that I'm going to get at least twelve to sixteen more physical therapy sessions. The strength in my arm is still doing great and is not weakening through the day like it used.

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Thursday, Oct. 26, 2017 - Today was a very relaxing day for me. I was supposed to go to physical therapy today, but my insurance had only approved six visits when the doctor wrote the initial prescription. I spoke to my insurance company yesterday and they told me to have my doctor rewrite the prescription to state that I needed to go for another 12 sessions and they would approve it. This is going to take between 3 to 5 days to get it approved, so I should be able to resume my physical therapy toward the middle of next week. My overall strength today has been phenomenal. My right arm is responding better than it ever has and the muscle is not fatiguing at all throughout the entire day. I'm aware that I'm repeating myself from day to day regarding the muscle not fatiguing, but you have to understand that this is an exciting time for me because for the past 30 to 40 years, after about 4 PM in the afternoon, my arm was essentially useless because the muscle would get so tired. Now I'm finding that the muscle tone is maintaining its strength throughout the day and to see this is not only exciting, but somewhat emotional. I did a YouTube video today explaining my status after my third loading dose and also to give everybody an update as to how my physical therapy is going. In the video, I show everyone the NMES, or neuromuscular electrical stimulation device that I ordered. Laura, my physical therapist, uses one of these on me whenever I go in for my therapy and this is what stimulates the muscle to help it build. These are the type of electrical stimulation devices that therapists will use to help you develop what they consider underdeveloped muscles. I wanted to order a unit for myself so I could continue my therapy once I finish my physical therapy with Laura. We checked on the Internet and found one that would be comparable to the one that she uses there in her facility. It is a single and a dual channel device that can work out both muscles either simultaneously or independently, and this is what I do during my physical therapy sessions. Click HERE to be taken to the link to see the unit that I purchased. If your doctor is recommending this type of electrical stimulation for your physical therapy, you can either buy the unit that I purchased or you can do a Google search for neuromuscular electrical stimulation devices, and you will find many of them that are available through one of your local medical supply businesses. I am in no way saying that the one that I am using is the best, this is just the one that Laura and I agree will work best for me. As I stated earlier, I produced another video and I published it to my YouTube channel earlier today. Click HERE to view my video.

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Wednesday, Oct. 25, 2017 - My physical strength today has been extremely good, compared to when I started my physical therapy. I only went to physical therapy two times this week because I am in the middle of requesting 12 additional sessions, but this may take between 3 to 5 business days. During the two days that I went to therapy, we worked extremely hard on building my upper body core strength and I am noticing now that even though my muscles begin to fatigue while doing my work out, the recovery of the muscle is getting shorter and shorter. I spoke to my insurance company today and they told me that as long as my doctor orders the prescription for another 12 sessions, they would approve it without any questions. Laura, my physical therapist, did her two-week evaluation on me and sent this information to the insurance company yesterday. I'm thankful that I'm bald on the top of my head, because if I wasn't, especially after speaking to my insurance company for three hours today, I would be yanking my hair out in handfuls. Even though it was frustrating talking to my insurance company, once I finally contacted the correct person, getting the information that I needed was very easy. I look at insurance companies like two-year-old children, you have to talk slow and you have to remember to use simple sentences and to not use big words which may cause confusion. While this may be comical to read, I'm speaking the truth. I will be doing a video tomorrow giving an update with regards to my physical strength and my status as I wait to go in for my fourth and final loading dose on November 13.

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Tuesday, Oct. 24, 2017 - MORNING NOTES: When I woke up this morning, my right arm seemed to be a little weaker today than it was over the weekend. I'm sure that this fatigue is due to my therapy that I went through on Monday. I'm starting my journal before I go to therapy, and when I get home from therapy, I will update my journal to include how my workout went and how I'm feeling. The fatigue that I'm experiencing is minor compared to what I went through two weeks ago. This week will be the second time that I've had three physical therapy sessions in one week, so comparing this week with my first week will give me a better idea as to how the muscle is progressing. I spoke to my therapist, Laura, last night and told her about the neuromuscular electrical stimulation device that I found. I gave her the model number and she found it and is going to recommend this unit to my insurance company to see if they will purchasing it for me. Either way, it's only $75, so if insurance doesn't pick up the cost, I will go ahead and purchase it out of pocket. I'm still waiting to hear from my doctor regarding increasing my physical therapy sessions, but Laura told me that she would go ahead and request more sessions from my insurance to see if she can get the ball rolling regarding the number of sessions that I'm allowed to take.  AFTERNOON NOTES: My therapy session today was a little more intense than normal. When I got there, Laura did her two-week evaluation on me so that she could send it to my insurance company and to my doctor. Overall, Laura said that she noticed a little bit of improvement on my right side regarding my bicep and even in my tricep. My left side, while not as strong as my right, showed a little bit of improvement as well. She's going to be writing a report later today and sending it to my doctor and to my insurance company, so when I receive this report from her, I will share this information with everyone. While these improvements may be minuscule to most people, even the smallest of improvements are miracles for me and I'm thankful that Laura can notice a change. Unfortunately, I had to cancel my therapy for Thursday because Laura has to send in the information to my insurance company to get more days approved before she can work with me. She told me that this normally takes anywhere from 5 to 7 days to get approval for more therapy. I plan on calling the insurance company tomorrow and lighting a fire under their rear ends to see if I can get it approved faster. I was really hoping to go to therapy three times this week, but I guess I will have to wait until after they approve more days. While I may not be able to attract the women with my physical physique, I'm still feeling pretty good about my progress. As I said in an earlier update, it took me 52 years to get this weak, so I know it will take me quite a while to regain what I've lost. No matter how hard it may be, I'm going to win this battle because I refuse to let SMA run my life anymore.

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Monday, Oct. 23, 2017 - When I woke up this morning, I was excited because I knew I was going to go to physical therapy today. I really want to get three days of intense therapy and compare the results with the three days of therapy that I received during my first week. My therapist is going to request more visits from my insurance because I've not heard from my doctor yet. My physical therapist, Laura, told me to start looking into a neuromuscular electronic stimulation device that I can use at home. I was under the impression that she was using a Tens unit, but when I went into therapy today, Laura explained that the device that she uses is an NMES, or neuromuscular electronic stimulation device. The Tens units are used for muscle relaxation and muscle therapy, whereas the NMES provides deeper muscle stimulation and this promotes strengthening in underdeveloped muscles. Laura said that she could recommend this to my insurance because she believes that this will help me maintain my muscle strength even after my physical therapy sessions end with her. Once I get my device, I will take it in with me during one of my physical therapy sessions and she said that she would show me how to use it and how to set it so that I can continue my therapy at home.

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Sunday, Oct. 22, 2017 - I went to bed last night with the intentions of watching a couple of movies, but as soon as my head hit the pillow, I was out. When I opened my eyes, it was already after 7:30 AM. I felt extremely strong all day today. Absolutely no muscle fatigue in my right arm and it felt like it was stronger than it had ever been. I've noticed that my muscle strength during the day is lasting throughout the entire day, instead of fatiguing and getting weaker as the day goes on. We all want the results to come quickly, especially when it comes to building new muscle, but I have to keep reminding myself that this is going to be a long process and the best thing for me to do is to just take it one day at a time. I guess it took me 52 years to get this weak, so it will probably take me a long time to build up enough muscle to where I can start doing the things that I used to do when I was younger. I finished editing my video where I discuss why it's so important for us to give blood work and urine samples every time we go in for one our treatments. This was an educational video for me because it taught me the importance of both of these tests and why our doctors want it every time we go in. Click HERE to view my video.

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Saturday, Oct. 21, 2017 - Today was a great day. There was no fatigue in my right arm and I felt strong all day. Most of my day was spent creating my video regarding why doctors want all of us to give blood work and give urinalysis samples every time we go in for one of our treatments. I myself didn't really know why until I started doing research on the kinds of tests that the doctors are wanting to see. I was somewhat surprised as to what these test results reveal regarding our overall health. I'm hoping to have the video uploaded tomorrow no later than 5 PM. Since I only went to workout one time last week, I think that's the reason why my muscle did not fatigue as badly as it did when I went three times in one week. This coming week will give me a better idea as to how my muscle is going to react and I will compare this week's results with the results that I had during my first week of physical therapy.

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Friday, Oct. 20, 2017 - When I came home from therapy yesterday, my right arm was a little fatigued due to the workout. Even though I worked extremely hard during my physical therapy, I noticed that after a few hours, my arm felt better and I suffered no fatigue for the rest of the day. I was also informed from my physical therapist that my insurance had only approved six visits. When I got home, I emailed my doctor to ask her to rewrite the prescription so that I can continue physical therapy for at least two months. Laura believes that the insurance will approve more time, but to get an extended period of time, like two months worth, the doctor would need to put this in her order. As of right now, I have not heard from my doctor regarding my request and if I do not hear from her by the end of today, I will call her office on Monday morning. I also added another page to my website showing my test results for my first three loading doses. These are the results of my blood work and urinalysis and I also list the normal ranges to show how my numbers relate to what they should be in the normal range. These are the tests that every doctor will perform on their patients receiving this treatment to make sure that there are no blood clotting and coagulation issues. The urinalysis will show the amount of protein that is present in the urine to make sure that there are no kidney and liver problems. As I go back for more treatments, I will update this list to include those numbers.

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Thursday, Oct. 19, 2017 - Today was another great day. I woke up this morning feeling strong, and this feeling of enthusiasm carried me through the day. My physical therapy went great, but I must say, it does seem to drain quite a bit of energy out of me. When I got home from physical therapy, I did notice that my right arm was not as tired as it usually is after doing all my exercises. Hopefully, next week, I can get in three good days of physical therapy and compare it to my first week to see if there's any difference with the muscle getting fatigued. I'm hoping that as I progress in my physical therapy, my muscle will rebuild faster and I won't go through as much fatigue as I did during my first week. My next therapy session will be on Monday, October 23. I have had zero side effects from my loading dose on Monday, and I'm pretty certain that I will not have any negative side effects for the remainder of my treatments. Yesterday, I addressed an issue on my YouTube channel that had been on my mind for quite a while. I had four of my subscribers send me emails telling me that their neurologists told them that once they reached a certain age, they would not qualify for the Spinraza treatment. I addressed this issue in a video and I uploaded the video yesterday afternoon to my Youtube channel. Click HERE to view my video.

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Wednesday, Oct. 18, 2017 - Today was a great day. My right arm and my energy level feels great, and the swelling in my ankles has disappeared. Today was a great day for me because one of my subscribers to my YouTube channel, who I now call my friend, began his loading doses. Scott was supposed to start last week, but due to a delay, he began his loading doses today. I spoke to him a little while ago and he said that everything went smoothly and that he feels great. For this, I am very thankful. We are all hopeful that this treatment will work, and while some of us may see greater benefits than others, I truly believe that we will all benefit in some way from this treatment. My dreams and my prayers are that we can take control of our body and that we can quit letting our Spinal Muscular Atrophy run our lives. It's time for us to take back control of our bodies, and there's no better time than the present. I resume my physical therapy tomorrow, after a brief rest due to a head cold, and I look forward to whatever Laura throws my way with regards to physical therapy exercises.

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Tuesday, Oct. 17, 2017 - Today was a great day. When I woke up, I immediately noticed that my right arm felt great and my energy level was high. The day before my third loading dose, I noticed that the swelling in my ankles had returned, but it was still much less than what I was used to. When I woke up this morning, the swelling had virtually disappeared. My energy level remained high throughout the day and my right arm felt strong and never fatigued. I now have four weeks to wait until I go in for my fourth and final loading dose. I'm anxious to see if I experience anymore benefits between now and my final loading dose. I was planning on going to physical therapy tomorrow, but I called and canceled because I'm battling a small head cold. I will return to physical therapy on Thursday, and then return to a three day schedule next week. My physical therapy days will now be Monday, Tuesday and Thursday every week until the end of November. My therapist believes that I will need more after the end of November, but she will have to take tests to determine as to whether or not the physical therapy is helping me. Both me and Laura believe that the physical therapy has already helped me, so both she and I are confident that the tests that I will take will show that I am benefiting from not only the treatment that I'm on, but the physical therapy that I'm going through as well. I have absolutely everything to look forward to and nothing to be nervous or scared about. I'm going to remain confident that these physical therapy sessions are going to show just how successful this treatment can be. I also understand that it's not going to be easy, but after 52 years of living with this disease, I can't wait to take control of my body and quit letting this disease run my life.

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Monday, Oct. 16, 2017 - When I woke up Monday morning, I felt strong and ready to take on the day. Knowing that I was going to go in for my third loading dose, I was excited at the fact that I only had one more to go before I started my maintenance doses every four months. I arrived at the hospital at around 11:45 AM. After being admitted, I went outside for about 30 minutes. The weather in Dallas is changing from summer to fall, and the temperatures are beginning to level off to more comfortable levels. At around 12:15 PM, I went back to the admissions department and the nurse came out and told me that they were ready. After getting to my room, nurses drew blood and did the urinalysis like they have with the previous two loading doses. Kimber was unable to make it to the hospital today because she had to work, but her sister Kristine came into my room right after the nurses had finished prepping me for the procedure. The doctor was running a little late, so at about 2:15 PM, a technician came into my room and took me to the fluoroscopy suites to begin the procedure. Once I was positioned on the table, the doctor came in and numbed my back was lidocaine. The procedure usually takes about 10 to 15 minutes from start to finish, but the doctor experienced difficulties getting into the central nervous system because the needle kept being deflected by one of the rods in my back. After numerous attempts, the doctor withdrew the needle and reentered the back at a different angle. He was finally able to guide the needle directly in to the central nervous system between my L2 and L3 vertebrae. Once he gained access into my central nervous system, the doctor withdrew 5 mL of cerebrospinal fluid and replaced it with 5 mL of Spinraza. After returning to my room and laying on my back for one hour, I was told that I could get dressed and go home. The rest of the day was pretty uneventful. I had no pain in my back nor in the injection site, and I never had a headache which is commonly caused by this procedure. I produced a video on my YouTube channel giving my subscribers and followers an update as to how my third loading dose went. Click HERE to view my video.

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Sunday, Oct. 15, 2017 - Finally, after waiting three days since my last physical therapy session, my strength has returned in my right arm. Today, I was able to use my right arm without any difficulties and I was able to lift my hand up to my mouth without my arm fatiguing. My physical therapist, Laura, told me that the strength would return and after three anxious days, I can say that she was correct. As I said in yesterday's post, waiting three days for the muscle to recover and rebuild itself was quite scary. Anytime you have a couple of good weeks with positive results, and then you experience a week where you feel like you are declining, it will make you stop and think. Now, I feel pretty confident that after I give my arm enough rest and enough time to recover from physical therapy, my strength should return each and every time. This, in and of itself is very encouraging. Tomorrow, I go in for my third loading dose, and my expectations are that this dose should go as smoothly as the first two. Kristine will be meeting me at the hospital and spending the day with me while I go through the procedure. Kimber, Kristine's sister, is having to work tomorrow and will not be able to take me to the hospital. My caregiver is out of town for the next week, so her father is going to take me and drop me off at the hospital about 11:30 AM. The procedure only takes about 20 minutes, but all of the preprocedural tests take about one hour before the procedure, and then after the procedure is over, I have to lay on my back for one hour. Ever since the beginning of my procedures, I haven't noticed any backaches or headaches that are normally associated with the side effects of this treatment. I will produce a video and upload it to my YouTube channel on Tuesday detailing how my procedure went.

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Saturday, Oct. 14, 2017 - Wednesday, Thursday and Friday, I noticed that my right arm was significantly weaker than it had been in quite a while. Laura, my physical therapist, told me that this is to be expected because as I work out more and more, I'll be tearing down the muscle, and as it rebuilds, it will be stronger. Today, after having two days of rest since my last physical therapy session, I have noticed that my right arm is a little bit stronger now and I believe that by tomorrow, it should be back to its full strength as it was before I began my therapy. I don't go back for physical therapy until next Wednesday, so I'll have another three days for the muscle to recover. To be honest, when my right arm began to get weaker as I went through my physical therapy, it scared me, because I felt I was doing more damage than good. These fears have slowly diminished over the last day since my arm is starting to show signs of recovering from last week's workout. I also have to trust Laura when she tells me that what I'm going through is normal and that these results that I'm seeing are normal and expected, especially when you're trying to rebuild underdeveloped muscle like I am. This is probably the fear that most of us that are going through this treatment will have. Just because we notice a positive change, like I did, doesn't mean that setbacks are going to be avoided completely. If this process has taught me anything, it's that I have to be more patient and I need to understand that this is going to be a very long and arduous journey. Tomorrow will be a quiet day spent with friends watching football and relaxing, so I'm hoping that when I began my therapy again on Wednesday, I'll be ready to tackle whatever Laura asks me to do.

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Friday, Oct. 13, 2017 - I have now completed my first week of physical therapy, and I must say, it was a lot more difficult than I thought it would be. Stressing the muscles in my biceps and triceps has caused me to be a little weaker this week, but I know with the weekend ahead of me, the muscles should rebuild and have time to heal before I go in for my therapy next week. I am in no way complaining about the therapy itself. My physical therapist, Laura, is doing a great job. I asked Laura to explain how we were going to build muscle in my neck. She told me that she was going to do elastic band therapy instead of the electrical impulse which is what she was doing on my arms and my core muscles. She explained that the electrical pulse therapy was used for underdeveloped muscles, such as the ones that are in my arm and in my stomach. Since I already have developed muscle in my neck, the elastic band therapy will allow her to add some resistance as I move my neck around to help strengthen the muscles that are already there. Today, my right arm is still weak, but I suspect over the weekend, I should regain most of strength that I lost. Laura told me not to worry about my arm being weak because she said this is natural any time you stress and fatigue muscle that is already underdeveloped to begin with. She seems to be pleased with the progress that I've made over the past week and while it may be difficult for me to see any progress, I have to trust that she's telling me the truth. I will say that I am a little depressed at the fact that my arm is not as strong as it was a week ago, but I have to remember that this is only the beginning of my therapy and I know that my body is going to be going through changes that may appear to be negative at first, but in the long run, the overall muscle strength should improve. I produced a video on my YouTube channel giving my subscribers and followers an update as to how my first week of therapy went. Click HERE to view my video.

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Thursday, Oct. 12, 2017 - This morning, when I woke up, I noticed that my body was extremely tired. Over the past week, I have been on the go from the time that I woke up, until the time that I went to bed. After getting in my wheelchair, my right arm was still a little weak. Physical therapy is taking its toll, and now it's taking a little longer for the muscle to rebuild and stabilize. The part of the therapy that is going to be tough for me is waiting for the muscle to tear down and start rebuilding. I know it's going to happen, it just worries me that it's not rebuilding as fast as what I would like it to. As I've stated in many of my videos, patience is something that has never been one of my strengths. As the day progressed, I started noticing a little more strength returning to my right arm. I know this is going to be a long process and I know that the results of all my hard work will pay off, so I need to remember that it's going to be 5 to 6 weeks before I see any major changes with regards to my strength level.

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Wednesday, Oct. 11, 2017 - Today was a fantastic day. I woke up feeling refreshed and ready to take on the day. When I went for my physical therapy, I was expecting that we would do about the same that we did on Tuesday, but to my surprise, Laura immediately began attaching the electrodes so that we could begin working on the muscles that needed all of the attention. We worked on my pects, biceps, triceps and wrist muscles. After attaching the electrodes to the area where we were going to work out, we did a series of 10 seconds on and 10 seconds off for each muscle group for a total of 10 minutes for each muscle. I would receive electrical impulse for 10 seconds and I would have to tense up the muscle that was receiving the electricity, then when the electrical pulse stopped, I was able to relax for 10 seconds. 10 minutes per muscle may not seem like a lot of time, but when it's happening, it takes quite a while. Laura would also keep her hands on the muscles we were working so she could give me feedback as to whether or not I was performing the exercise correctly. Even though I'm getting positive feedback, I'm also getting a little negative feedback as well when I do not perform the exercise like I should. Laura's constant feedback is fantastic and while these workouts may be intense, I'm enjoying them immensely. As I'm writing my update to my journal, my muscles are a little sore, but the soreness that I am experiencing lets me know that what we're doing is working. Another exercise that she did with me was that she had me sit straight in my chair without any support from the back rest or the armrests of my chair. Laura stood behind me and she would push me forward or backward, and even side to side, and I would have to recover and keep myself in a seated position. As we performed this exercise, I felt the muscles in my body fire and constrict to keep me in an upright position. Overall, everything is going great and I'm looking forward to the coming days.

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Tuesday, Oct. 10, 2017 - When I woke up this morning, there was a sense of excitement in the air. Knowing that I was going to go for my first physical therapy session made me remember just how real everything is getting. Knowing that I've come this far and that I have achieved some measurable results, makes me optimistic that physical therapy will help me to improve not only my physical strength, but it will also help me reshape my future with regards to my independence. When I met with the therapist, she had a great attitude and spirit. She seems to be the kind of person that will work just as hard as I will, so that I can achieve measurable and quantitative results. One of the things that she did to me today was attaching electric pads to the muscles in my arm that control the hands and fingers when you grip something. My therapist slowly increased the amount of electricity that was charging through these muscles, and as she did this, I could feel the muscles activate and wake up. Feeling muscles that you haven't felt in over 30 years is an eye-opening and somewhat emotional feeling. Knowing that these muscles are still active and that they can still respond, encourage me to work even harder. While I know that some of my therapy will not be pleasant, I go into it with an attitude that nothing will defeat me. I produced a video on my YouTube channel giving my subscribers and followers the status as to my first physical therapy session. Click HERE to view my video.

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Monday, Oct. 9, 2017 - My physical strength and stamina continue to improve each and every day. When I wake up each morning, the first thing I do is move my right arm to make sure that everything is still operating like it should. Every morning that I do this, I'm surprised at the ease at which I can move my right arm. I'm excited about tomorrow because I begin my physical therapy. I've never been given permission to do any kind of physical therapy until now, and with this opportunity that is being presented to me, I plan on taking advantage of it in every way possible. I'm hoping that my subscribers and followers, if given the same opportunity, will be as excited as I am.

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Sunday, Oct. 8, 2017 - Today has been a quiet day, especially compared to the six that became before it. I continue to be thankful for the growth that has occurred this week, and I'm excited as to what awaits me in the coming week. My stamina and strength are consistent with what they've been all this week and I am beginning to believe that this increase in strength that I am experiencing will be something that I will not lose anytime soon. We all hope and pray for the best, and your prayers along with mine, seem to be helping immensely. I begin my physical training on Tuesday of this week, and my physical therapist seems optimistic that improvement will be forthcoming. I hope all of my subscribers and followers have a wonderful upcoming week and while I know that I'm in your prayers, please remember that you too are in mine.

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Saturday, Oct. 7, 2017 - Today was a completely uneventful day. When I woke up this morning, I went directly into my home office and I've been here the entire day. It's getting to that time of year that I have to pay taxes, so I'm busy working on determining when everything is due. My physical strength and stamina are still at an all-time high and the swelling in my ankles is still perfect. Many of you have written me telling me how glad you are that I'm seeing positive results with regards to the treatment, and for that, I'm very appreciative. I try to look at everything in a positive manner, but I know that challenges still await me, as I know that they will be waiting for all of us. My father used to get nervous when everything started going great because he was afraid that something bad would happen. With everything going the way it is right now, it would be easy for me to anticipate problems, but I refuse to let myself do that. I'm trying to remain optimistic and positive and I would hope that all of you who are reading this will do the same. There will always be people in your life that will try to bring you down. Sometimes I believe it's their goal to try to make all of us as miserable as they feel, and I will never let this happen. No matter what happens throughout your day, try to look at the positive and try harder to ignore the negative. Your attitude and positive thoughts will make even the hardest of days more bearable. When you wake up in the morning, think of one thing that you have to be grateful for and focus on that throughout the entire day. Trouble will always find its way in your life, but it's up to you as to how long you allow it to linger.

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Friday, Oct. 6, 2017 - Reflecting back on the last week, I'm still amazed at the amount of stamina and strength that I'm feeling. In my post on Wednesday, October 4, I stated that it's the little achievements that I've been noticing that have been the most exciting. When you do something that you're not used to doing, and you notice it after you have accomplished the task, it can be somewhat eerie. When I was able to reach across the desk and pull my computer mouse back to its normal position, I actually sat and looked at my right arm and I asked myself whether or not I just did what I thought I did. While this may sound somewhat humorous or comical, if and when it happens to you, you will probably have the same reaction that I did.  This week has come and gone so quickly, and with a busy schedule next week, it won't be long before I begin my third loading dose. I'm excited to see what the next few days bring, especially with regards to the possibility of more improvements. I produced a video on my YouTube channel giving my subscribers the status as to how I'm doing since my second loading dose. Click HERE to view my video.

  • One of my subscribers to my YouTube channel by the name of Scott told me that his first loading dose is going to be next Wednesday, October 11. We were thinking that we would go and start our loading doses about the same time, but due to scheduling, he will be receiving his first loading dose just prior to me receiving my third loading dose. I'm sure that the same doctors that are taking care of me will also be taking care of him, so I know that he will be in good hands. God Bless you Scott, you are starting on a journey that will hopefully change your life forever.

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Thursday, Oct. 5, 2017 - While I haven't noticed any major improvements since my last loading dose on Monday, October 2, I'm fully aware that my strength level and stamina seem to be consistent throughout the entire day. The swelling in my ankles has all but disappeared and the cramping in my right calf has diminished to where it's not bothering me while I sleep. Yesterday, I extended my right arm further than I've ever done in a long time and I tried it again today with the same success. While my energy level has never been a problem, I have noticed that feeling stronger has given me a boost of energy that carries me throughout the entire day. My right arm used to get tired when I would go long distances in my electric wheelchair, but this is becoming less of a factor each and every day. Since I've started noticing small increases in my strength and stamina, my confidence in doing things that used to be challenging are becoming less stressful. I have more confidence in challenging myself to do things that would normally be more difficult to do because I feel that I have the strength to accomplish what I set out to do. Confidence is something that can either drive you or hinder you, and I plan on using my new found confidence to push myself to try things that I would have normally either not done, or been scared to try believing that I would fail in my attempt.

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Wednesday, Oct. 4, 2017 - Today was a good day. My physical strength was strong throughout the entire day and I caught myself doing a few things that normally would be a challenge. I accidentally pushed my mouse on my desk a little out of my reach and without thinking about it, extended my arm and pulled the mouse back in its normal position. As soon as I did it, I was somewhat surprised at the ease at which I accomplished this task. Normally, I would have to put my arm on the desk, leaning forward, and then inch my arm forward using my fingers. Today, when I leaned forward I was able to extend my arm out without having to use my fingers and I did this without even thinking about it. Little surprises like this will make anybody's day better, and I am no exception. While I know that change will be slow and will come little by little, it's the things that you do without realizing you did it that will make you open your eyes and think.

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Tuesday, Oct. 3, 2017 - Today was a very busy day. I worked on editing my recent video that I did on Monday, and uploaded it to my YouTube channel earlier today. Along with that, I edited my website and my Instagram account along with answering a few emails. I felt strong all day today and my stamina is at an all-time high. Some of you have written me and told me that I'm probably not going through any positive reaction to my treatment. Some of you have said that I just believe that I'm getting stronger because I'm excited about my treatments. To this response, I say that these changes are probably due to my treatment because I haven't felt this strong in years and the swelling in my ankles have all but disappeared. The swelling in my ankles have been there for over 35 years, so to just think that this is a circumstantial occurrence would be as far from the truth as you can get. Either way, I feel fantastic and I believe that I have only good things to look forward to regarding the rest of my treatments. I will be doing another update video either Wednesday or Thursday of this week giving my subscribers and followers information on a workout schedule that my physical trainer is going to put me on. I will be meeting with the physical therapist and a personal trainer three days a week for the foreseeable future. Now that I have the ability to possibly build muscle, I'm going to take advantage of each and every day to not only improve my mental state, but my physical state as well.

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Monday, Oct. 2, 2017 - You couldn't have written a better script with regards to how my second loading dose went. I arrived at the William P Clements Hospital at approximately 12:30 PM. At about 1:00 PM, they began all my pre-procedural tests and compared them to the results of my first loading dose on September 18. After verifying the results, doctors called the pharmacy to order my Spinraza. When the nurse came in to get me to take me to the fluoroscopy suites, he had my Spinraza in the box and I got to hold it. It can be very emotional to hold something that your body has been craving for over 50 years, and trust me, you couldn't have pulled it out of my grasp if you tried. The procedure itself went flawlessly. The only downside was that the doctor that was supposed to do my treatment had been called away on an emergency surgery and the doctor there was originally scheduled to do my first loading dose was the one who did my second. Since he had all of the coordinates in my chart when the first loading dose was administered, he was able to pinpoint the exact same spot in my central nervous system. After numbing my back, he injected the needle into my central nervous system, withdrew 5 mL of cerebrospinal fluid, and then injected 5 mL of Spinraza into my central nervous system. The entire procedure was over with in less than 10 minutes and the only thing that I felt during the entire procedure was when he numbed my back. To be honest with you, I really didn't feel too much when the doctor numbed my back. After the procedure was completed, I had to lay flat on my back for one hour and then I was allowed to get dressed and go home. Throughout the day on Monday, I felt great. I had no side effects from the second loading dose and I got a good night sleep on Monday night. I also produced a video on my YouTube channel giving my subscribers the status as to my condition after my second loading dose. Click HERE to view my video.

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Sunday, Oct. 1, 2017 - Tomorrow, I go back to the UTSW - William P Clements Hospital for my second loading dose of Spinraza. I'm not quite as nervous about this injection as I was my first, because the same doctor that did my first loading dose will be doing all of my loading doses along with my maintenance doses once every four months. His 25 years experience brings a lot of peace of mind to me. When I called to confirm that he was going to be doing the injection for me, his nurse told me that when she spoke to him, he said for me to relax and know that my second procedure should go smoother than my first. Having a doctor with the ability to ease your mind is a blessing, and I'm very thankful for this. Today was a good day with regards to my muscle strength and stamina. I'm excited to get tomorrow over with and to get to the midpoint of my loading doses. 

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Daily Journal - Sept. 2017

Saturday, Sept. 30, 2017 - Today has been an extremely strong day. Over the past week, I've been wondering whether or not the changes that I'm seeing in my strength level and other changes that I'm seeing in my body are due to the first injection that I had on Monday, September 18 or could some of this just be a placebo effect and my mind is playing games with me. My caregiver and her father told me that the swelling in my ankles have diminished to levels that they haven't seen in the five years that they have been with me. I normally have some edema in my ankles due to my sedentary lifestyle, but the swelling has gone down so much that my ankles almost look normal. This tells me that it has nothing to do with a placebo effect and the only thing that I can contribute this to would have to be my first injection. Even my weakest day this week, which was Friday, was barely a factor in my day, so I'm starting to believe that the Spinraza is working in my body the way it was designed to do so. My increase in appetite also proves that my body may be requiring more nourishment to better handle the changes that it may be going through. Little changes like the ones that I'm seeing, along with others who are seeing positive changes are exciting changes that we should all be thankful for. I never thought I would be this thankful for a small increase in muscle strength, but if I could do a dance, it would definitely be a happy dance. My second loading dose is coming up this coming Monday and I'm thoroughly excited to see what kind of changes are in store for me for the coming two weeks.

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Friday, Sept. 29, 2017 - Over the past week, I have experienced strength levels in my body that I haven't experienced in years. Today, my right arm was a little weaker than it had been during the week, but this decline in strength was minimal in nature. Overall, I felt extremely strong throughout the day and like the past few days, I was able to function more easily than I had before my treatment started on September 18. The Interventional Radiology Department called me today to verify my second loading dose treatment scheduled for Monday, October 2. They also verified that Dr. Chason would be performing the treatment and that I needed to arrive no later than 1 PM. When I get there, they will perform another urinalysis and draw more blood to verify that my levels are remaining consistent. My appetite has increased quite a bit this last week and I believe that this is caused by my increasing strength level and stamina. This has been a great week for me and I'm looking forward for more improvement as I go forward with my upcoming treatments. I also produced a video on my YouTube channel before my second loading dose, scheduled for Monday, October 2. Click HERE to view my video.

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Thursday, Sept. 28, 2017 - Today, like Wednesday, was an extremely strong day. Since Monday, September 25, my strength level has increased exponentially. Yesterday and today, my right arm has felt better than it has in years with regards to strength. Normally, in the mornings, my arms are generally pretty strong, but as the day persists, the strength level seems to diminish. For the past two days, my strength level has maintained a constant level and my muscles in my right arm do not seem to be fatiguing at all. In reality, the last four days have been wonderful and my optimism and my excitement are growing stronger and stronger each and every day. I'm starting to believe that this new treatment may actually be working. If I can maintain this strength level until I go in for my second loading dose on Monday, October 2, I truly believe that I'm experiencing a dream come true. My doctor responded to my email with regards to a physical therapist. She recommended that I locate a physical therapist that I can go to instead of them coming to my house. She thinks that if I go to their facility, I will have better results because they will be able to better handle strength training using their equipment versus what I have at my house. I contacted a physical therapy center near my house and they agreed to help me. They accept my insurance, so I wrote my doctor a note asking her to send a prescription so that they can start the process of getting the approval so we can begin. I explained my weaknesses and we're going to work out three days a week for an hour and half each day. Since most of my weakness is core related, she's going to work on building my core muscles in my stomach, back, neck, biceps and triceps. Hopefully, in the next two weeks, I'll begin physical training for the first time in my life. I've always said that positive thinking and prayer can work wonders. I finished editing my next video which will be out tomorrow, Friday, September 29. This video will give all of my subscribers and followers an update with regards to my strength levels and conditions before I go in for my second loading dose next week. As my optimism grows, I ask for continued prayers that my strength continues to increase each and every day.

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Wednesday, Sept. 27, 2017 - When I woke up this morning, I felt something that I haven't felt in a few years. My right arm was extraordinarily stronger than it had been in a very long time. I gave up smoking five years ago, but I still use a vaping stick. Usually, I have great difficulty getting my vape stick to my mouth. Today, I am able to easily lift my arm up to my mouth and my strength level has remained the same throughout the day. I am still hesitant about contributing my first loading dose to my increase in strength, but if this strength level continues for the next 4 to 5 days, I will probably be able to contribute my increase in strength to my first loading dose that I received on Monday, September 18. I want so much to say that these treatments are working, but I know that I have to be patient in both my enthusiasm and my words. I will say this, I have not had this much stamina and strength for the past few years and my excitement is growing day by day that this treatment may actually be doing something. Positive thoughts and prayer are worth their weight in gold.

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Tuesday, Sept. 26, 2017 - For the first time in nearly a week, I got a full night sleep last night. Eating bananas for the past couple of days has apparently remedied my problem with regards to the tight muscle in my right calf. Yesterday, I mentioned that my right arm did not fatigue as much as it usually does when I'm driving my electric wheelchair. This morning, my right arm felt strong and it remained that way for the duration of the entire day. If my arm continues to stay strong and my energy level remains where it is for the next week or so, I may be able to contribute this increase in strength and stamina to my first loading dose. Again, I need to be careful about contributing my increase in strength to the Spinraza treatment until I can maintain this level of strength for a long enough period of time where I know that it is not what I am normally used to. In video #96, I told everybody that doctors had to call in a specialist to perform my first loading dose. After the procedure, I asked the specialist if he would be available to perform my other loading dose procedures, and the specialist told me that he would be more than happy to do so. I spoke to the Interventional Radiology Department earlier today and they informed me that the specialist, Dr. Chason, had already scheduled me in his appointment calendar and that he would be the one performing the remainder of my loading doses and the upcoming injections that I would be receiving every four months. When they spoke to Dr. Chason this morning, he told the nurse to tell me that he was looking forward to my upcoming injections and that I could rest assured that everything was going to be okay. This news is a huge relief for me knowing that this is an issue or a problem that I will not have to deal with in the future.

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Monday, Sept. 25, 2017 - Today was one of those days that seemed to fly by with the blink of an eye. I woke up pretty early in the morning so that I could spend the day with Kimber running errands in the Dallas-Fort Worth Metroplex. My energy level, to say the least, was through the roof. I drive my electric wheelchair with my right arm and hand, and my arm did not fatigue as easily today as it normally does. I am now exactly one week into my first loading dose and have not really noticed any kind of change with regards to physical strength. My energy level and strength in my right arm may be a benefactor of my first loading dose, but until I have more time to evaluate my strength for the remainder of the day today and the coming days during the rest of this week, I will reserve judgment. The cramping in my right calf has returned to normal and I slept pretty well last night. I really think the problem was caused by a potassium deficiency which was remedied by eating a banana each day for the past two days. A few of my subscribers to my YouTube channel asked me if I noticed any difference in my strength since my first loading dose. I told my subscribers that changes are going to take place over a given amount of time. Our bodies have to become accustomed to this new treatment and I think over the next few weeks, I will start to see some benefits, as I hope we all do. I'm expecting a phone call on Wednesday that I hope to be able to share with all of my subscribers either Thursday or Friday of this week. Unfortunately, I can't say anything else about this, so keep your fingers crossed and hopefully by Thursday or Friday of this week, I will be given permission to share this wonderful information with everybody. (I think they call this a teaser!) I also produced a video on my YouTube channel giving my subscribers the status as to my condition and I also discuss my Daily Update Journal that's in my website. Click HERE to view my video.

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Sunday, Sept. 24, 2017 - I feel quite a bit better today, and most of my cramps in my right calf have calmed down and everything is back to normal. I've been drinking a few more fluids over the weekend, plus I'm eating a banana every day because I'm thinking some of my problem could have been a potassium deficiency. I slept a lot better last night and even though I still had a few cramps that woke me up, I was able to reposition my body and fall back asleep. My energy level is much better and I'm able to lift my right arm up to my mouth with very little difficulty. If I do not hear from my doctor on Monday, I will call her office on Tuesday so that I can get an answer with regards to a physical therapist working with me to help me build new muscle strength. Tomorrow will be one week since my first loading dose, and besides the cramping in my right calf, I have experienced no negative side effects with regards to the injection. I'm hoping that my progress is like those who have gone before me. Most of these individuals have experienced some changes between their second and third loading dose, so I'm hoping in the next 2 to 3 weeks, I'll be experiencing some of these changes myself.

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Saturday, Sept. 23, 2017 - All day yesterday, and all night last night, my right calf has been extremely tight. Thursday night, when I went to bed, these cramps began to occur and they seem to be lasting throughout the night. I have a Sleep Number bed, which allows me to raise the feet and the head, and no matter what position I get into, nothing seems to alleviate the cramping in my calf. I think over the last two nights, I may have gotten a total of four hours sleep. My brother brought me some magnesium spray that I can use on my legs and he believes that this will help eliminate some of the stiffness. I have had cramps in my right calf, off and on, for years, but since my treatment on Monday, September 18, they seem to have gotten worse. I'm not real sure if we can attribute this to my first loading dose injection or if it is just something that is occurring naturally in my body. Either way, I really wish the cramping would stop because I'm desperate for some sleep. My brother and I are going to a concert at the Meyerson Symphony Center in Dallas Texas tonight, and as soon as I get home, I'm hoping to get a good night sleep. I still have not heard from my doctor regarding the email that I sent her on Wednesday. If I do not receive anything by Tuesday, I will call their office. My overall strength level is a little better than yesterday, but I'm still feeling somewhat lethargic. I will continue drinking more fluids throughout the weekend to see if I get any better. I ate a lot of pasta last night and today hoping that this will give me some energy. Even though I may sleep through a portion of tonight's concert, I'm looking forward to spending the evening with my brother.

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Friday, Sept. 22, 2017 - Today seems to be the most difficult day of the week. I didn't sleep very well last night because my legs were cramping, along with a little bit of discomfort in my lower back. The discomfort in my lower back may be attributed to the injection, but I think the discomfort in my lower back and the cramping in my legs may be caused by a slight bit of dehydration. My urine output has been slightly elevated over the past three or four days, and I don't think that I've been drinking enough fluids to compensate for the elevated output of urine. Over the weekend, I will drink more fluids to see if this remedies these two issues. My caregiver mentioned that the swelling around my ankles has diminished significantly over the past three or four days, and even though there is still some edema around the ankles and my heels, it's much better now than it was when I started my procedure on Monday. I'm sure that the increase in my output of urine has contributed to the decrease in the swelling around my ankles. My arms are weaker today than they been during the last five days, and I'm guessing that the dehydration may have something to do with this as well. My energy level seems to be fine, so I'm hoping that drinking more fluids over the weekend will help me to not only sleep better, but to also alleviate the discomfort in my back and in my legs. I also produced a video on my YouTube channel giving my subscribers the information that I received from my doctor earlier today. Along with my test results over my blood work and urinalysis, the doctor shared his notes that he put in my chart while performing the procedure on Monday, September 18. Click HERE to view my video.

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Thursday, Sept. 21, 2017 - Today was a great day. While I still haven't noticed any difference in strength, I need to remind myself from time to time that it's only been three days since my first loading dose. I've never been a patient person. I want results now instead of 3 to 5 weeks, but I have to remember that my body is still getting use to the Spinraza. Other people who have finished their four loading doses say they noticed changes between the second and third loading dose, and some even said that it was between their third and final loading dose before they noticed any change. Patience is a virtue and it's something that I need to practice. I sent an email to my doctor inquiring about the possibility of her prescribing a physical therapist so that I can start working out, but again, it may be too soon to start any kind of workout routine. After I sent the email to my doctor about the physical therapist, I called and spoke to my rep at Biogen about exercising with a therapist. I was told that there is no documentation from Biogen stating that this is a requirement, but she did say that this may be a good way to track my progress as I go through the four loading doses of Spinraza. Hopefully by tomorrow, I will have an answer. In the email I sent my doctor, I also told her about the increase in my urine output, but I truly believe that this has nothing to do with the treatment that I went through on Monday, September 18.

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Wednesday, Sept. 20, 2017 - Like yesterday, there have been no side effects that can be correlated or attributed to the procedure that I had done on Monday, September 18. My muscles are reacting normally as they always have, but I still have an increase in urine output. I will call the doctor's office on Thursday to ask them about this increase. I also produced a video on my YouTube channel giving my subscribers a status as to my condition. Click HERE to view my video.

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Tuesday, Sept. 19, 2017 - So far, I have had no side effects with regards to my treatment that occurred on Monday, September 18. At this time, I haven't noticed any notable increase in strength, but its only twenty fours hours since the procedure was performed. The only change in my body is an increase in urine output, but I'm not sure if this has anything to do with the treatment that I just received.

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Monday, Sept. 18, 2017 - After arriving at the UTSW - Bill Clements Hospital at approximately 11:30 AM, I went directly to the registration department and began checking in. After receiving my ID bracelet, we were escorted to the waiting room. At approximately 12:15 PM, they escorted me to room #4 and put me in my bed to begin the pre-procedure tests. The pre-procedure tests consisted of nothing more than bloodwork and urinalysis. At approximately 1:30 PM, they took me to the Interventional Radiology Department, where they put me on the fluoroscopy table and began taking images of my back. The doctor that was scheduled to do the procedure showed me the images that they took and explained that he was not going to be able to do the procedure himself because he couldn't find an opening in my spine to administer the treatment into my central nervous system. He explained that his only other option was to take me to the CT Department, where they could try to perform this procedure, but he told me that this was probably not going to be a successful option. After discussing this with other doctors, they decided to call in a specialist with over 25 years experience performing lumbar punctures. After sharing the fluoroscopy images with a specialist, the specialist said that he felt that he could do the procedure and he would come down and discuss it with me. When the specialist came into the room, he told me that he felt comfortable enough to do the procedure if he could just reposition me on the fluoroscopy table and take a few more images. After taking more images, he told me that he located two areas in my back where he knew that he could inject the treatment directly into my central nervous system. Within a span of five minutes, the doctor not only numbed my back, he successfully withdrew 5 cc's of CSF, or Cerebral Spinal Fluid, and he then administered 5 cc's of Spinraza directly into my central nervous system without any problems. The specialist also put coordinates in my chart detailing exactly where he found the two spots on my back so other doctors would be able to do my future procedures. He also volunteered to do my procedures if I would prefer it, and I told him that I would like him to do my future treatments. After the treatment, I had to lay flat on my back for one hour and then I was allowed to go home. The entire procedure was painless and went much better than I had ever expected. For the rest of the day, I experienced no pain in my back and I had no headaches. To be honest, removing the Band-Aid from my back the evening after my procedure, hurt worse than the procedure itself. Click HERE to view my video. 

Top of Sept. 2017 Journal