Monthly Journal - July (2019)

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Monday, July 29, Through Sunday, August 4 - I got so much done this week, it felt as if I had 30 hours in each day, and had 8 days in the week. I guess that's one of life's mysteries that none of us will ever be able to fully understand. Why can we get so much done one week and then feel that we get nothing done another week? It's been just over a month since my 9th Spinraza injection, which was actually my 5th maintenance dose injection. I've only had a few days during this month where I felt a little bit weak, but overall, my energy level and strength have been terrific.


When I went for my workout with Emily on Thursday, we had to go through my reevaluation. Every 4 weeks, we go through these re-evaluations just to take measurements and to check on my progress. My insurance company contacted Emily and told her that they no longer needed the measurements on my knees, because they were not seeing enough improvement. Even though the insurance company stated that they didn't need these measurements, we still continue to work on the range of motion and flexibility in my legs, just to make sure that I don't lose any of the range of motion that I've gained over the past 6 or 8 months. When we were taking my measurements, she went ahead and took the measurements just to see how much of a negative degree bend I had in my legs, and surprisingly, I received some excellent numbers. My reevaluation scores are in the test results section of my website. Click HERE if you would like to see these results. The reevaluation process only took about 20 minutes, so we spent the remaining 40 minutes working on my core strengthening exercises. Everything went as planned up until we got to the point to where I was going to be doing my crunches with the resistance band. Normally, Emily will take the blue resistance band and sit behind me. She then takes the resistance band and places it around my chest, and my job is to lean forward while she applies resistance. Instead of grabbing the blue resistance band, Emily grabbed the black resistance band. The black resistance band is the band with the most resistance. I stared at her with a questionable look on my face, but she just smiled at me and told me to give it my best shot. After leaning forward and after feeling her pullback on the resistance band, I slowly came back up into position and began leaning forward to see if I could accomplish this. You really don't know how much improvement you're getting until you're forced to do something new, and as I leaned forward, I was pleasantly surprised in my ability to do it without too much difficulty. I performed 2 sets of 30 reps. I wanted to do another rep of 30, but Emily told me that we better stop to make sure that I didn't overdo anything. She said when we do this exercise in 2 weeks, we would increase it to 2 reps of 40, and then in another 2 weeks, we would do 3 reps of 30. The one thing that I like about Emily and all of the physical therapists that I work with, is that they take me slow with regards to my progression. There are times that I want to go gung ho and full speed ahead, but luckily, Emily is there to slow me down to a more manageable rate. Sometimes, I have the ability of letting my enthusiasm write a check that my butt can't cover, so it's nice to have someone there to tell me to slow down. Next week, when I go for my workout, Emily and Vikki will transfer me to the therapy table and work on the range of motion and flexibility in my hips, legs, knees, ankles and feet. Emily is also in the process of writing her next article for the SMA News Today HCP website. If you look at the picture on this week's journal entry, you'll see one of the pictures that will be featured in this article. We are working on stretching the muscle that's in my hip, to make it more comfortable for me. Let's face it, if you sit as many hours as I do, your muscles tend to get tight. In the article that Emily is writing, she talks about how important it is to do these types of exercises. As soon as she produces the article for the HCP site, and after it's published, I'll provide a link so that you can go out and read the article for yourself. I'll also be taking some of these pictures and putting them to a short video explaining how important these exercises are for me.


When I do my video for next Sunday, I'm going to be answering the question that I've been wanting to answer for quite some time. A few of you have written me emails since the beginning of my YouTube channel asking me why I'm not an Ambassador for Biogen Pharmaceuticals. Up until just a month ago, I was very hesitant to answer this question because of certain circumstances that I'll explain in my video next week.


I've updated the flash briefings that I do for BioNews Services. Click HERE to go to the flash briefings.


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

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Monday, July 22, Through Sunday, July 28 - Overall, this was a great week. I completed quite a few projects that I was working on for BioNews Services, and my week seemed to go as smooth as it could. I ate good, got some good rest, and my body feels great. Other than a little bit of discomfort in my right hip, which I'll talk about in just a moment, it was a pretty uneventful and smooth week.


I had to rearrange my physical therapy scheduled this week because Emily was in St. Lucia at a destination wedding. When I went for my workout with Emily on Thursday, she was at the front desk doing some paperwork. I asked her how St. Lucia was, and whether or not she was sunburned. She laughed and said that she definitely got too much sun, but she had a fantastic time. This past week, Emily and Vikki transferred me to the therapy table and we worked on all my balance and range of motion and flexibility exercises. We started out doing all of the normal balance exercises that we do, and this really went well. Along with the perturbations and Emily shaking the table, my core muscles got a great workout. Sitting on the edge of the therapy table and balancing, there needs to be a level of trust between you and your therapists. When I first started doing this about 6 or 8 months ago, I was very apprehensive, but that didn't mean that I didn't trust Emily and Vikki. Now, it's something that I don't even think about. I know that Emily is behind me and Vikki is in front of me, and I never worry about falling off of the therapy table. Trust is essential when doing these types of exercises, and I hope and pray that you have enough trust in your therapist, like I do with mine. After finishing my balance exercises, Emily and Vikki laid me down on my back. When I was on the therapy table 2 weeks ago, both Emily and I forgot to do the stretching in my right hip, so that was one of the things that she focused on during my workout. I thought it would be a little painful. given the fact that it had been 2 weeks since I was really stretched out, but as she started flexing and stretching my right hip, it actually felt terrific. As I laid on my back and zoned out, Emily asked me if I was okay. When I open my eyes and looked at her, she laughed and said you must really be enjoying all of the stretching. I told her that I could already tell that this week was going to be better than the previous one. After finishing all of my stretching and flexibility exercises, Emily worked on the muscles in my neck, which really felt good. It's almost like getting a massage, but, Emily doesn't allow me to go to sleep, LOL… After finishing with my neck, Emily and Vikki sat me back up on the edge of the therapy table, and we worked with the resistance band while I leaned to my left and my right. After we finished with this, I thought it was time to transfer back to my wheelchair, but Emily grabbed the red resistance band and gave it to Vikki, who was standing in front of me. She told me that she wanted Vikki to put the resistance band around my back, and we were going to work on an isometric exercise. She wanted Vikki to pull my upper body toward her with the resistance band, and my job was to remain upright, without leaning forward. To my surprise, and I think even to the surprise of both Emily and Vikki, I was able to do this without any problems. We started out with Vikki about a foot in front of me, then she slowly backed up further and further, until the resistance band started pulling me forward. At this point, I had to use my core muscles to remain in a seated upright position. I was actually quite surprised at how far Vikki had to walk away from me before it started to become difficult for me to remain upright. Emily was standing behind me with her hands in front of my shoulders, so I knew that if I started to lose my balance, Emily would be able to grab me and keep me from falling. Again, this is where trust comes into play. Emily said that I did so good, we would use the green resistance band in 2 weeks. As the weeks and months progress, I should be able to use the higher resistance bands in this particular exercise. The isometric exercise that we did is important for me, because this builds the muscle and my core strength that I need to stay sitting back in my wheelchair as I go down an incline, whether it be a ramp or any unlevel service.


In this week’s video, I talk about something that has nothing to do with SMA, but it’s a subject that all of us with SMA may have to face at certain times in our lives. Recently, the 2019 Annual Cure SMA Conference was held in Anaheim California. Due to my inability to fly, I was unable to attend this conference, and in my video, I share my feelings as to what needs to be changed so that those of us in wheelchairs, have the ability to fly like anyone else. This is the right that we not only want and need, it’s a right that we deserve.  Click HERE to view my video.


I've updated the flash briefings that I do for BioNews Services. Click HERE to go to the flash briefings.


I hope that all of you had a fantastic week. Do something for yourself this upcoming week that will make you a better person. God bless you and I'll see you in a couple of weeks.

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Monday, July 15, Through Sunday, July 21 - This past week, was smooth and non-eventful. The only time that I left the house was when I went for my workout, and other than that, I spent the majority of my day behind my desk working on podcasts, flash briefings and trying to restructure BioNews Service's multimedia and social media platforms. Work is keeping me extremely busy, and I'm extremely thankful for that. This upcoming week is filled with conference calls, physical therapy and other activities that will keep me busy each and every day.


This past Tuesday, when I went for my workout with Emily, we focused on my core strengthening exercises. Last week, when Emily and Vicki transferred me to the therapy table, both Emily and I forgot to do the stretching exercises on my right hip. When Emily and I were working out this week, I told her that my right hip was hurting, and then we both remembered what we had forgotten to do. She was extremely apologetic for it, but I told her that it was more my fault than hers because I should've remembered that working my hip out keeps me from being sore. When I go back for my workout this coming week, we will definitely stretch out my right hip which will keep me more comfortable than I've been in the past week. Last week, we did all of my normal core strengthening exercises, and I spoke to Emily about something else that I was thinking about with regards to helping my balance while I sit in my wheelchair. While my core strength is improving, I'm still very uneasy about rolling on uneven surfaces in my chair. About 6 months ago, I lost my balance while I was driving my wheelchair when I hit a patch of concrete that was angled to the left. This completely through me off guard, and I lost my balance and fell to my left. Luckily, my seatbelt kept me from falling out of my wheelchair, but losing my balance made me realize that this is something that I needed to work on. In the coming months, after all of our summertime heat dissipates, Emily and I will go outside and she will work with me on driving my wheelchair's on uneven surfaces. This is definitely something that is scary to me, but having either Emily or Vicki with me, I know that if I get into a situation where I'm going to lose my balance, they will be there to help me. While my balance is definitely better, these uneven surfaces that I may encounter in the future, is something that I know that I need to work on. Next week, Emily and Vicki will transfer me out of my wheelchair to the therapy table, and we will do all of my balance exercises along with my stretching and range of motion exercises.


I'm still trying to get used to doing a video every other week, instead of every week. With my work schedule the way it is, it's nice not to have to do a video each week, but as new treatment options and clinical trials open up and become available for those of us who suffer from SMA, I may have to start doing a video per week, depending on the amount of information that I have. I did update my photo gallery with a few new pictures. Click HERE to be taken to my photo gallery.


I've updated the flash briefings that I do for BioNews Services. Click HERE to go to the flash briefings.


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

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Monday, July 8, Through Sunday, July 14 - This week started out with a bang, and it got better as the week went on. On Monday, July 8, I went back to UT Southwestern Medical Center's William P Tate University Hospital for my 5th maintenance dose injection of Spinraza. It's hard to believe that I've now had 9 injections, and it shocks me as to how fast time has flown by. This was probably the smoothest and easiest procedure that I've gone through, and I detail everything that happened to me in my YouTube video, which I'll talk about more than just a moment.


This past Tuesday, when I went for my workout with Emily, she and her assistant Vicki, transferred me from my wheelchair to the therapy table. Emily will be doing another article for the SMA News Today HCP site, which is our healthcare professional website that we set up for doctors, medical professionals and others in the healthcare industry. Her article will detail how to transfer someone with SMA from their wheelchair. While most physical therapists know how to transfer a patient using a slide board, not many therapist have had to transfer someone who is unable to assist in the transfer process. This article will detail how to do this. During my workout, one of the physical therapy students that was there took pictures as Emily and Vicki transferred me, and I will use these pictures in the article that Emily is going to write. After transferring me to the therapy table, we worked on my balance exercises. Emily did her normal perturbations, where she pushes me forward, backwards and from side to side, and she also shook the table with her knee, which added another degree of difficulty. Along with the perturbations and her shaking the table, my core muscles get a great workout. After about 15 minutes, they laid me down on my back and began working on my range of motion and flexibility exercises. After this, Emily worked on the muscles in my neck, then they sat me back up, and we finished with some resistance band training while I leaned from side to side. These exercises worked the oblique muscles. Next week, Emily and I will work on my core strengthening exercises using the resistance bands.


In this week's video, I detail exactly what happened to me when I went back for my 5th maintenance doses Spinraza, and I also give my subscribers and followers some pointers on how to avoid getting a headache after one of these procedures. Headaches are common side effect of any intrathecal or spinal cord injection, and the tips that I share will help to avoid getting one of these headaches during any of your procedures. Click HERE to watch my video.


I've updated the flash briefings that I do for BioNews Services. Click HERE to go to the flash briefings.


I hope that all of you had a fantastic week. Do something for yourself this upcoming week that will make you a better person. God bless you and I'll see you in a few weeks.

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Monday, July 1, Through Sunday, July 7 - This is been one of those weeks that started out perfectly, took a turn for the worse, then leveled off to become a very good week. While we all hope for good weeks to become repetitive, this isn't always the case. My week started out normally, with regards to how I felt, then late in the afternoon on Monday, I started experiencing quite a bit of weakness in my arms. Come to find out, this weakness that I was experiencing wasn't due to anything but my own stupidity and forgetfulness. I'll touch on this in just a moment.


This past week, when I went for my workout with Emily, we went through my 4 week reevaluation process so that she could turn in these results to my neurologist. We did all of the normal measurements and strength tests, and everything turned out great. I'll post my results of my reevaluation to my website next week. After finishing all of these measurements and tests, Emily and I focused on my core strengthening exercises, and the exercises that we do for my neck muscles. She also found time to stretch out the muscles in my hips and my legs, which definitely felt good. Next week, Emily and Vicki will transfer me from my wheelchair to the therapy table and we will do all of my stretching and range of motion exercises, along with all of my balance exercises.


I was actually quite surprised that my results on my physical therapy reevaluation went as well as they did. As I stated earlier, late in the afternoon on Monday, I started experiencing quite a bit of weakness in my arms, and I also felt somewhat lethargic. When I got to the workout facility, I spent a few minutes talking with Emily about this. We discussed some of the possibilities as to why I felt this week is I did, and the only thing that we could think of was that I was just overworking myself with regards to my job and my physical therapy. After my workout, I went home and finished my work day with regards to BioNews Services. On Wednesday morning, I still felt extremely weak and lethargic. Around 2:30 PM on Wednesday, I decided to lay down and rest for the remainder of the day. While laying in my bed, I thought about how I felt, and I racked my brain trying to figure out what was going on. Around 8 PM on Wednesday night, the light bulb went off in my head. I realized that I had forgotten to drink my protein supplement shakes for the last 5 days. After thinking about it for a little bit, I realized that my body was starving for protein, thus, causing the weakness and the lethargic feelings that I was going through. I had Jennifer, one of my caregivers, get me one of my protein supplement shakes and I drank it. On Thursday morning, when I woke up, I felt 100% better. The strength in my right arm was not near as bad as it was, and I then realized that not drinking these protein supplement shakes was the cause of all of my problems. I went to bed early again on Thursday, and I made sure that I drank one of my protein supplements. On Friday, after I woke up, all of the strength that I lost earlier in the week had returned, and I was fine for the rest of the week.


In this week’s video, I discuss how Spinraza may, or may not be helping me. I talk about the differences between the way I felt while receiving my loading dose injections, versus how I feel while going through my maintenance dose injections. The differences may surprise you, and I’m hoping that the information that I give you, will give you information that you can talk to your doctors about.  Click HERE to view my video.


I've updated the flash briefings that I do for BioNews Services. Click HERE to go to the flash briefings.


I hope that all of you had a fantastic week. Do something for yourself this upcoming week that will make you a better person. God bless you and I'll see you soon.

Monthly Journal - August (2019)

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Monday, August 26, Through Sunday, Sept. 1 - Have you ever had one of those weeks where everything seemed to be in the wrong place just because you had to rearrange one meeting or event? My caregivers came back from vacation on Thursday morning, so I had to move my workout with Emily from Tuesday to Thursday afternoon. When Tuesday came, I felt completely lost because I am so used to going to physical therapy, and this one small change in the week through my schedule off completely.


When I went for my workout with Emily on Thursday, it was time to do my 4 week reevaluation. Emily's physical therapy student, Lexi, performed all of the measurements with regards to my range of motion and strength measurements, then, Emily followed up behind her and remeasured to make sure that Lexi got the correct numbers. It's really a lot of fun working with physical therapy students as they learn the different tricks and trades of becoming a physical therapists. One funny thing that happened was that Lexi told me that she had never taken as many measurements on a patient during their reevaluation as she did mine. Emily, Lexi and I began laughing, and I told Lexi that I am the epitome of everything that is wrong. She laughed and patted me on the back and told me that I wasn't, but it still brought a smile to both of their faces. My reevaluation went well, except for the measurements in my ankles. The swelling in my feet was pretty substantial this past week because of my confusing schedule and my change in sleeping patterns. After doing the reevaluation, Lexi and Emily worked on my core strengthening exercises using the resistance bands and isometric exercises that we normally do. Next week, Lexi and Emily will transfer me from my wheelchair to the therapy table and we will do my balance exercises, along with all of my range of motion and flexibility exercises. Emily's next HCP article will be about letting physical therapy students work with patients, and Lexi will be writing a paragraph in the article describing what she has learned by working with me, and what she has learned with regards to working with a patient with spinal muscular atrophy.


Next week, my video will cover a topic that I think all of you should be made aware of. Cure SMA recently hosted a webinar. This webinar detailed some great information regarding updates on Zolgensma. In this video, I go over some of the details regarding when this treatment may become available to those of us that are adults, and I also give my decision as to whether or not I'm going to stay on Spinraza or make the move to Zolgensma.  My decision may surprise the majority of my subscribers and followers, and I thoroughly explain why I make this important decision. This is a video that you will definitely want to watch, and the information that I give you, should be great information to discuss with your families, friends and your medical staff.


I've updated the flash briefings that I do for BioNews Services. Click HERE to go to the flash briefings.


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

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Monday, August 19, Through Sunday, August 25 - What a crazy and hectic week. My caregivers that live with me left on Tuesday for their family vacation, and I have a temporary caregiver living with me until they return. Last year, when my caregivers went on vacation, I had a bad experience with the temporary caregivers that I used, and when my caregivers returned from their vacation last year, I was admitted to the hospital 2 days later with pneumonia. Luckily, the caregiver that is with me now is extremely sweet and everything is working out great. Who knows, I may not have to go to the hospital this year. YAY ME!! My work schedule at BioNews Services is keeping me extremely busy, so idle time is not necessarily a problem that I have to deal with.


When I went for my workout with Emily on Tuesday, she and Vikki transferred me from my wheelchair to the therapy table and we did all of my normal stretching and balance exercises. Emily's physical therapy student, Lexi, got to do the majority of my exercises with me. Since Lexi had never transferred me from my wheelchair before, she observed how Emily and Vikki did it this week, and in 2 weeks, when I go back in to work on the therapy table, Lexi will assist Emily in all of the transfers. When we started my balance exercises, Emily was behind me and Lexi stood in front of me. For some reason, I was having quite a bit of difficulty keeping my balance this week, especially when they would pull me backwards. I usually don't have too much difficulty, but this week, it just felt like I wasn't on my game. After Emily finished all of the perturbations, she and Lexi switched positions and Lexi began doing the perturbations. While I thought that Lexi would go easy on me, I was wrong. She worked me out just as hard as Emily did, and by the time we finished all my balance exercises, I was huffing and puffing like an old man that just ran the Boston Marathon. Emily and Vikki then laid me down on my back and we began my stretching exercises on my legs, hips, knees, ankles and feet. Emily did notice that my legs were a lot less tight and rigid this week than they were 2 weeks ago when we worked on the therapy table. She said that 2 weeks ago, my left hip flexor was extremely tight, but this past Tuesday, she said that it felt much better. I guess there is no rhyme or reason as to why one week is better than the other. While I wasn't too thrilled about my balance exercises, I'm still anxious to see how I do week after next when I transfer back to the therapy table. Hopefully things will go better. Emily told me not to worry about it and she said that it would probably be better next time.


I'm also happy to report that Emily's 3rd article for the SMA News Today HCP site was published on the day that I went for my workout. Emily's article deals with lower extremity exercises for people with SMA, and since I have severe muscle and nerve damage in my right hip, the primary focus of this article was how we are doing these exercises. Since both of my physical therapists, Laura and Emily, have produced articles for the SMA News Today HCP website, I thought I would share the links to their articles in case you would like to read them.


Laura's Articles:   https://hcp.smanewstoday.com/author/laura-cifre/ 

Emily's Articles:   https://hcp.smanewstoday.com/author/emily-jones/ 


In this week’s video, I’m sharing the video that I did for my physical therapist, Emily, and it involves the proper and safe way to transfer a patient with SMA. She transfers me from my wheelchair to the therapy table every other week, and this video demonstrates not only keeping the patient safe, but also keeping the therapist safe as well when going through the transfer process.  Click HERE to view my video.


I've updated the flash briefings that I do for BioNews Services. Click HERE to go to the flash briefings.


I hope that all of you had a fantastic week. Do something for yourself this upcoming week that will make you a better person. God bless you and I'll see you in a few weeks.

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Monday, August 12, Through Sunday, August 18 - This has been a crazy week to say the least. A week ago, I was experiencing quite a bit of weakness in my right arm, and this weakness persisted for quite some time. Luckily, on Monday, August 12, my right arm started to recover, and my strength level slowly improved throughout the week. I'm not sure why I experienced this weakness, but I guess it's something that those of us with SMA just have to deal with from time to time. My caregivers are getting ready to go on vacation next week, so I met with the lady that's going to be staying with me while my caregivers are gone, and my work with BioNews Services is keeping me extremely busy.


When I went for my workout with Emily on Tuesday, Emily had 2 physical therapy students with her. One of the students was hers, and the other physical therapy student was Laura's. Laura will be returning next week from her maternity leave, so her physical therapy student worked with Laura along with Laura's physical therapy student. We went through all of my core strengthening exercises, and the physical therapy students got to perform all of these exercises with me. It's actually nice to work out with physical therapy students because I get to explain what SMA is, and why I'm taking physical therapy. After explaining what SMA was, and after they did my workout with me, they both seemed extremely comfortable with working with someone with SMA. While Laura's physical therapy student will be working with her next week, Emily's physical therapy student will be working with me, and Emily will be observing. Next week, Emily, Vikki and Emily's PT student will transfer me from my wheelchair to the therapy table and we will do all of my balance exercises, along with my range of motion exercises on my legs, hips, knees, ankles and feet.


Emily's next article for the SMA News Today HCP website will be published on Monday, August 26. After this article is published, I will provide a link in my journal entry. Since Emily is going to be working with the PT student for the next 6 weeks, her next article for September will be about letting physical therapy students work with patients that have SMA.


I added a few pictures to my website. Click HERE to view my pictures.


I've updated the flash briefings that I do for BioNews Services. Click HERE to go to the flash briefings.


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

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Monday, August 5, Through Sunday, August 11 - While I was hoping for an easy week, it ended up being full of activity and not much excitement. I took a day of vacation on Friday, because Thursday was my birthday and I wanted to relax a little bit and try to catch my breath for the upcoming week. Trying to cram 5 days worth of work in the 4 days presented challenges, but I was bound and determined not to let these challenges beat me. Suffice it to say that I won the battle, but it was a war that I don't want to face for quite some time.


When I went for my workout with Emily on Tuesday, she and Vikki transferred me out of my wheelchair to the therapy table and we worked on all my balance exercises, along with all of my range of motion and flexibility exercises on my legs, hips, knees, ankles and feet. I used to be quite nervous about transferring, but Emily and Vikki have made this process a routine that no longer makes me nervous. They've both mastered the skill of getting me transferred from my chair to the table and then back to my chair an easy and quick process. All of my exercises went well, and other than just a few sore muscles and being tired, everything went as planned. For some reason, I was a little bit tired on Tuesday during my workout, and I have no reason for being as tired as I was. My sleeping pattern is good in my energy level had been fine up until Tuesday, but for some reason, I just felt a little bit week and lethargic. When I went home on Tuesday, and after I finish the rest of my work for BioNews Services, I went to bed early. I was still a little bit week on Wednesday, Thursday and Friday, but each day got just a little bit better. By Saturday, the only thing that was bothering me was my allergies. While I felt strong and my energy level was high, these allergies made my nose run and my eyes water relentlessly. While my legs may not run, my nose would've beaten anybody in the 100 yard dash. While working out with Emily, we finished taking pictures for her next SMA News Today HCP article. Since being diagnosed with severe muscle and nerve damage in my right hip, we've been working on these muscles each and every week during my workout, and Emily's article addresses these issues. Once this article is published, I will provide a link so that anyone reading my journal entry will be able to see this article.


In this week’s video, I answer a question that quite a few of you have asked me in the past, but until now, I felt uncomfortable answering. The question revolves around my reasons why I chose not to be an Ambassador for Biogen Pharmaceuticals. My reasons for not becoming an Ambassador were ones that I had to seriously consider, and I think after listening to my reasons, you’ll fully understand why I made the decision that I made.  Click HERE to view my video.


I've updated the flash briefings that I do for BioNews Services. Click HERE to go to the flash briefings.


I hope that all of you had a fantastic week. Do something for yourself this upcoming week that will make you a better person. God bless you and I'll see you in a couple weeks.

Monthly Journal - September (2019)

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Monday, Sept. 23, Through Sunday, Sept. 29 - What an unbelievable week. Monday started out just as normal as any week, but something happened during physical therapy that put a smile on my face, and made the rest of my week go much better than I would've ever dreamed of. My work at BioNews Services is going great and my energy level is through the roof.


When I went for my workout with Emily, I was anticipating working with Emily and Vikki, but Laura was there and she wanted to work out with me and Emily. After transferring me from my wheelchair to the therapy table, we began working on my balance exercises. While perturbations are good to use, my balance has improved to the point to where we have to be more inventive as to making these balance exercises more challenging. With Emily behind me, and one of their physical therapy students in front of me, Laura jumped on and off of the table to try to get me to lose my balance. The first time we did this, it took me a few times to get used to the table rocking back and forth, but this past week, it seemed as if my balance was very strong. I was doing so well, Laura went and got a 7 pound therapy ball and started throwing it down on the table to try to shake the table in a different way. This was a dramatic failure that caused all of us to laugh, because Laura was the one getting the workout instead of me. Picking up a 7 pounds therapy ball and throwing it down on the table caused Laura to get a great workout on her arms, and it provided a huge laugh for everyone else. What came next was what made my week so incredible. After laying me down on my back, both Emily and Laura began working on my range of motion and stretching exercises. We did this for about 20 minutes, when Emily and Laura started talking between the both of them in a quiet voice. I looked at them both with almost a fearful look on my face, because I knew that they were up to something. Laura looked at Emily and asked Emily if she wanted to try it, and Emily smiled and said absolutely, and she said she had been wanting to do that to me for a long time. Now my heart was beating much faster than it normally does because I had that feeling of vulnerability rushing through my body. I looked at the both of them and told them that I wanted to know what they were planning on doing to me. Laura just smiled and said you'll find out in just a minute, and she walked away. Trying to get information from Emily was just as frustrating. When Laura returned, she had a gait belt, a black resistance band and a bedsheet. It was then that I learned what they were planning on doing to me. They wanted to perform an exercise called an assisted bridge. This exercise was intended to check whether or not I was able to use my glutes and quad muscles in my legs. After deciding to use the bedsheet, Emily rolled me on my side and Laura placed the sheet under my waste, just above the top of my buttocks. After rolling me back over on my back, Emily pulled the sheet toward her so that both she and Laura would have equal amounts of this sheet to use. They then lowered the therapy table down as far as it would go, and Emily and Laura stood on a stepstool on my side. They placed 1 foot on the stepstool and the opposite knee on the therapy table. With the physical therapy student stabilizing my feet to the therapy table, they first began lifting my hips off of the therapy table to extend my hips. They started slowly, judging my comfort level. After being able to do this without any discomfort, Laura wanted me to try to push my body toward the top of the therapy table when they elevated my hips. While I thought that this would be an impossible task, I was pleasantly surprised at the results. The first couple of times that they elevated my hips, I tried to push my body forward, but didn't have any luck. On about the 5th try, when they elevated my hips and I tried to push forward, I actually felt my body move about an inch. Both Emily and Laura looked at each other and they both said that they saw my body move forward. The smiles on their faces immediately caused me to become somewhat emotional, because this was the first time that I've ever been able to do anything like this. We did this exercise another 5 or 6 times, and I continued to push my body forward. While the forward progress was only about an inch, we all knew now that these muscles were at least activating and firing like they were supposed to. Both Emily and Laura could tell that I was getting emotional, and I could see some emotions coming out of their faces as well. This was a huge step in my exercise program, and it's another exercise that we are going to focus on in the coming months. After we finished all of my exercises, and after they transferred me back to my wheelchair. Laura told me that we would be doing this exercise again in a couple weeks, and I could hear some excitement in her voice. It'd been quite a while since I got to work out with Laura, because she just returned from maternity leave after giving birth to her son. Emily is going to be on vacation this next week, so Laura will get to work with me on my core strengthening exercises during this upcoming week.


Over the next couple weeks, I'm going to be reporting on Risdiplam, which is a potential treatment from a company called Roche/Genentech. This is an oral treatment for those of us with SMA, and it works on the SMN2 gene, similar to Spinraza. I've heard through the grapevine that Roche/Genentech will be seeking FDA approval in the coming months regarding their potential treatment, and there has been quite a bit of excitement regarding this new drug. I will also be giving an update with regards to other treatments that are currently in clinical trial stage and give you my opinions as to whether or not I see these coming to fruition for those of us with SMA.


I've updated the flash briefings that I do for BioNews Services. Click HERE to go to the flash briefings.


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

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Monday, Sept. 16, Through Sunday, Sept. 22 - Mundane, routine, normal and other similar adjectives, shouldn't be used when describing this week. This week is been filled with surprises that it made me think that I may be getting a little better than what I had originally thought. My energy level this week has been phenomenal, and I'm not sure if this is something that will be a normal occurrence, or if this is just a phase that I'm going through with my disease. I have so much to tell you, so let's get started.


When I went for my workout with Emily, this was the first week in 6 weeks that I was back working with Emily and her assistant, Vikki. While I thoroughly enjoyed working out with Emily and Laura's PT students, I was also equally excited about getting back to working out with Emily and Vikki. It's funny how over a course of time, we build a camaraderie with the people that we spend the majority of our time with. Everyone at my workout center have great attitudes, but there's something about working out with the people that you use to, that just made this particular workout somewhat special. After transferring me from my wheelchair to the therapy table, I thought we were going to begin with my normal balance exercises. Emily and I had discussed changing these balance exercises up, to make them a little bit more difficult and challenging, and given the fact that my balance has improved, this made sense. Instead of doing the normal perturbations were Emily pushes me forward, backwards and side to side, we decided that we would have someone get on and off of the therapy table to challenge my sense of balance with weight distribution. With Emily behind me, and Vikki in front of me, Laura began getting on and off of the therapy table to challenge my balance. This was something that was completely new to me, and while it took me a little while to get used to it, all of us were pleasantly surprised at my abilities. Over the past couple weeks, I have had a few challenging workouts, and these challenges made me question my improvements. It's not that I was getting depressed, I was just wondering how much improvement I was making. After last Tuesday's workout, I felt as if I could officially say that I have definitely improved. While Laura was getting on and off of the therapy table, I could feel my core muscles firing and keeping my body upright, and while this may seem like a small accomplishment to some, it was huge to me. While we were all doing this exercise, I was getting great feedback from Emily, Vikki and Laura, and while I felt somewhat embarrassed about all of the accolades, it stroked my ego enough to where I really fealt these exercises are giving me some benefits that I will be able to use to get stronger. In the next couple weeks, I'm going to video this portion of my workout so that you can see exactly what I'm talking about. Let's just say that I wasn't the only one smiling, and this was probably one of my best workouts that I've ever had. This upcoming week is going to be slightly different than normal. Emily is going on vacation on Wednesday of next week, so we're not only going to do my 4 week reevaluation, we're also going to transfer me back to the therapy table and work on my balance and range of motion exercises. We are switching this up because during the week that Emily is on vacation, I don't want Laura to have to transfer me from my wheelchair to the therapy table. She's just now returning from maternity leave after giving birth to her son, so the week that Emily is on vacation, Laura will work with me on my core strengthening exercises, which we do while I'm sitting in my wheelchair.


In the opening of my journal entry, I made a statement that I was experiencing some changes in my strength that were somewhat surprising. My right arm has felt extremely strong for over a week, and this increase in strength is different than any other increase that I have experienced. I'm not struggling to get my arm up like I had been, and while this has happened in the past, I still experience some of those days where nothing seems to be going right. This past week, everything has gone perfectly. The increase in arm strength has remained throughout the week, and my energy level is the best that it's been since starting my Spinraza treatments. Recently, Biogen announced that they were considering increasing the dosing amount of Spinraza that they are giving their older patients. This is sending shockwaves through the SMA community, and this is a topic that I will be discussing in the next couple weeks. I've always questioned why adults receive the same dosing amount of Spinraza that the infants and toddlers receive, and while this may be something that Biogen had to do with regards to safety and efficacy, increasing the dosing amount, in my opinion, could hold huge potential for older SMA patients like myself. I guess my enthusiasm and excitement around this announcement may be another reason why my energy level has been so high during this past week. 


In this week's video, I'm sharing my message of hope. I'm comparing the past the present, and the present to the future. In a recent email from one of my subscribers, they asked me how I remained optimistic while living with a deadly disease, and my answer, as simplistic as it is, is an answer that I hope all of you take to heart. Click HERE to view my video.


I've updated the flash briefings that I do for BioNews Services. Click HERE to go to the flash briefings.


I hope that all of you had a fantastic week. Do something for yourself this upcoming week that will make you a better person. God bless you and I'll see you in a couple weeks.

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Monday, Sept. 9, Through Sunday, Sept 15 - This past week was crazy. I find it somewhat comical that some weeks are slow and mundane, while other weeks are crazy and hectic. The weeks that are crazy and hectic seem to go by faster, I guess because I'm so busy. This past week, I had quite a few videos to do for BioNews Services, and I also had to edit the video and the article that my physical therapist and I are doing for the SMA News Today HCP site. I'm hoping that the upcoming week will be somewhat slower, which will hopefully allow me to catch my breath.


When I went for my workout with Emily, and her student Lexi, we worked on all of my core strengthening exercises using the resistance bands and isometric exercises. This was Lexi's last week to assist in my workouts. Lexi had a great spirit and attitude, and really enjoyed learning more about spinal muscular atrophy. I know that when she gets her PTA certification in December of this year, she's going to make a great therapist. All of my exercises went well, and Lexi also had the opportunity to help me perform all of my stretching exercises for my hip and leg, while I was sitting in my wheelchair. I like the fact that she was able to perform these exercises while I was on the therapy table and in my wheelchair, because this demonstrated to her that these exercises can be performed in different scenarios with her patients. During the past 6 weeks, we took numerous pictures of Lexi working with me, along with Emily, and I put these pictures to video that will be available on the HCP site. As soon as Emily's HCP article is published, I will provide a link in my journal entry so that those of you that are reading my journal entry can see it.


Next week, I will be showing another video that we did with regards to the exercises that Emily and her assistant Vikki are doing with me, to help with the nerve and muscle damage in my right hip and leg. These exercises have helped me tremendously, and I'm hoping that those of you that watch my YouTube channel will not only review the video, I'm hoping that you will talk to your physical therapist about incorporating some of these exercises in your workout routine.


I've updated the flash briefings that I do for BioNews Services. Click HERE to go to the flash briefings.


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

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Monday, Sept. 2, Through Sunday, Sept. 8 - With everything that I'm doing at BioNews Services, along with my physical therapy schedule, and everything else that I have going on in my life, this was an extremely busy week. I'm currently working with a doctor who specializes in pulmonary rehabilitation, so we can get his podcasts started for BioNews Services. This is a new venture for BioNews, and it's one that I'm excited to be a part of. Trying to organize everything, and getting everything up and running on time and on schedule, has proven to be quite a task, but, everything worked out for the best.


When I went for my workout with Emily, and her student Lexi, they transferred me out of my wheelchair to the therapy table and we worked on all of my range of motion and flexing exercises. Before laying me down on the table, we worked on my balance exercises. Emily normally does perturbations, where she pushes me forward, backwards and from side to side, to test my balance. Now that my balance has improved, she is having to come up with new ways to push me further with regards to this exercise. With Emily standing in front of me, and Lexi standing behind me, we had another physical therapy student standing in front of the table, and all 3 of them began shaking the table in different directions to try to throw me off balance. This was actually quite fun, but anybody looking at the 3 of them shaking the table to try to make me lose my balance, would probably think that this was a form of torture that they were putting me through. We were all laughing while I tried to keep my balance. Overall, I did rather well, but it was still funny to look at from someone who may have just been walking into the therapy center and not known what they were doing. Emily and I are working on her next article for the HCP site for BioNews Services, and her article will talk about letting physical therapy students work with patients that have SMA. Most physical therapy students only learn a little bit about what SMA is while they are in school, so by letting the students work with me, I'm able to not only tell them about my story with SMA, but hopefully, relieve some of their fears with regards to working with patients with SMA. I love working with students because they are eager to learn, and I'm just as eager to teach. I'm hoping that Lexi will see more SMA patients when she graduates in December. I know she's gonna make a great PTA.


In this week's video, I'm sharing information that was given during the recent Cure SMA webinar, where they gave some great updates regarding Zolgensma. I focus on 2 clinical trials from AveXis Pharmaceuticals, and I also give my answer as to whether or not I'm going to switch from Spinraza to Zolgensma when it becomes available to those of us who are adults. Click HERE to view my video.


I've updated the flash briefings that I do for BioNews Services. Click HERE to go to the flash briefings.


I hope that all of you had a fantastic week. Do something for yourself this upcoming week that will make you a better person. God bless you and I'll see you in a couple weeks.