Monthly Journal - June (2018)

Monday, June 25, Through Sunday, July 1 - I fully understand that the majority of my opening comments in my journal entry seem to be repetitive, but I've come to realize that this is normal every day life, especially for me. While my plate seems to be full of things to do, much of the work that I did this week revolved around dealing with insurance adjusters, roofing companies and contractors. The hailstorm that we had over a month ago destroyed the shingles on my roof, and also damaged much of my fence. After what seemed to be an endless phone conversation with all of these people, I think I have finally completed everything that I need to do with regards to getting my house repaired from all of the damage.

On Monday, July 2, I will be doing a photo shoot with a professional photographer for Health Monitor magazine. They are doing a story about Spinal Muscular Atrophy, and they are featuring myself, and a gentleman by the name of Kevin Schaefer in their upcoming magazine article. I spent nearly an hour on the phone with the reporter who was going to write the story. During this phone interview, we discussed everything from my childhood and how I dealt with having SMA, and we also discussed my viewpoints regarding this disease and why I always stress to everyone about having and keeping a positive attitude regarding their own lives. This will be the first time that I have ever experienced a photo shoot with a professional photographer. Maybe I can convince her to Photoshop some hair on the top of my head.

Unfortunately, with everything that I had to do this week, I was unable to work out with Laura. Even though I tried to schedule everything around my normal Thursday workout, a few of the contractors that I had to deal with this week only had Thursday available to meet with me, so this had to be my top priority. It actually worked out for the best for both Laura and I because Laura's PTA, Emily, was on vacation all this past week. Since Laura has to spend the entire hour with me, it was going to be difficult for her to juggle this amount of dedicated time with me, along with taking care of all of the other patients that Emily would've taken care of. Laura did offer an available timeslot on early Thursday morning where she caould spend the entire hour with me, but I was already scheduled to meet with the adjuster from the insurance company. While I never like to miss a workout, I know that there will be times that I am unable to work out like I want to. I am planning on going to work out next Thursday at my normal time.

In this week’s video, I’m going to be telling everyone about the time that I spent during the two days that I attended the 2018 Annual Cure SMA Conference. While I go over this information, I will also be showing some of the pictures that were taken during this event. Many of the pictures were taken by someone other than myself, but I did include a few of the pictures that I took, and I added these in the presentation as well. These two days that I spent at the conference were probably the most emotionally rewarding two days of my life. I met so many people, and the impact that they had in my life will be something that I carry with me forever. I’ve also uploaded two podcasts to my SoundCloud account, podcast #8 and podcast #9, where I go into further detail regarding the workshops I attended during these two days. If you listen to these two podcasts, you’ll learn the valuable information that I received, and you’ll also hear how I helped a young lady make, what I believe, is a life changing decision. This 45 minute conversation I had with her and her parents was the most important conversation I have had in my life. As a matter of fact, by the time we were finished with our conversation, we were all in tears. Click HERE to view my video. Click HERE to listen to my podcasts.

If you have not viewed my midweek that I published to my YouTube channel this past Wednesday, please click HERE to view this video. The answer that I received from the doctor from Cytokinetics regarding a combination therapy of their drug Reldesemtiv and  Biogen's drug Spinraza, gave me a lot of hope for all of us that suffer from SMA. I hope that everyone had a fantastic week, and I hope your upcoming week will be better than the previous. Please do something for yourself this upcoming week that's going to make you a better person. God bless, and take care of yourself.


Monday, June 18, Through Sunday, June 24 - This week, I have a renewed sense of energy, and much of this energy came from all of the positive things that I received while attending the 2018 Annual Cure SMA Conference. Meeting all the wonderful people that attended this conference with me, proved to me that those of us with SMA have so much to look forward to. Unfortunately, the video that I'm doing where I recap the events that occurred during this conference will not be available on my YouTube channel until next Sunday. I'm still waiting on some of the photographs to come back so I can use them in my video, so this week, my Sunday video will review a company by the name of Envisagenics, and their new drug discovery platform that they call SpliceCore. I'll discuss more about Envisagenics further down in this journal entry.

Last week, I had to go to physical therapy on Wednesday, due to my schedule and my preparations for the conference. This week, I went to workout with Laura during our normal Thursday appointment. My workout went well, and even though I was tired, my neck muscles held up during the workout. Even though I had to stop a few times to rest, these muscles recovered, and I was able to finish my workout without any difficulty. I told Laura that I had an opportunity to talk to some of the researchers and doctors from the various pharmaceutical companies, and I told Laura that their views on physical therapy were as strong as mine. I first went into my workouts thinking that this was going to be something that I would do for six months to a year, but I think both Laura and I realize that our once a week workout session will probably become a normal weekly activity for the rest of my life. I've said in previous journal entries that if I miss a workout, I don't feel the same. Working out with Laura gives me an opportunity to not only socialize with some great people, it gives me a way to work on my muscles in a way that I would not be able to do otherwise. Some people may get discouraged at the fact that they have to go to physical therapy every week, but this is something that I truly enjoy. My hopes and prayers are that my insurance company will allow me to continue doing this based on the fact that I'm not only getting stronger, I'm also feeling much better.

In this week’s video, I’m going to be introducing everybody to Envisagenics, and their new drug discovery platform they call SpliceCore. This discovery platform is nothing more than a huge database of information pertaining to RNA. RNA is an acronym that stands for ribonucleic acid. In layman’s terms, RNA is the in between molecule that reads the information in DNA, so our bodies can produce a complete functional protein. Envisagenic’s goal is to learn how to properly splice this RNA molecule so that they can determine why it is not producing the protein that it should so that those of us with SMA can either sustain the muscle that we already have, or better yet, why we are unable to build new muscle. Their database, SpliceCore, is the largest database to date with regards to RNA sequencing data. Click HERE to view my video.

NOTE: While I usually only post one video per week, on Sundays, this week, I will be posting a video to my YouTube channel on Wednesday as well. In this midweek video, I will be showing a video that was shot during the Q&A session that occurred during the final stage of the 2018 Annual Cure SMA Conference. In the video, you will hear me ask a question to the doctor from Cytokinetics Pharmaceutical. Since Cytokinetic's drug Reldesemtiv worked at the muscular level, and Biogen's drug Spinraza worked at the cellular level, my question was whether or not Cytokinetics and Biogen were planning on doing a combination therapy of both of their drugs together. Since these two doctors were sitting next to each other on stage, I recommend that they both go into a room together and find a way to get their two drugs to work together. Based on the audience's response to my question, I think they were wondering the same thing. The answer that I received from the Cytokinetic's doctor surprised and thrilled everyone in the room, including myself. On Wednesday, I will update my journal entry with a link to this video. This video link will not only be available in this journal entry, it will also be available on my Youtube VLOGS & Podcasts page on my website.

I hope everyone has had a fantastic week, and I hope your upcoming week is better than the previous. Please do something for yourself this upcoming week that's going to make you a better person. God bless, and take care of yourself.


Monday, June 11, Through Sunday, June 17 - What an unbelievably fast paced week. When I woke up on Monday morning, I literally blinked my eyes and it was already Friday. To say that time flies would be an understatement. I spent the majority of the week trying to prepare to go to the 2018 Cure SMA annual conference. With my Friday and Saturday being completely booked, this meant that I had to get my Sunday video completely edited and uploaded to my YouTube channel in private mode by Thursday. Along with the video for my YouTube channel, I also had to record and edit my video for the SMA News Today YouTube channel.

I usually go to work out with Laura on Thursdays, but this week, I went to workout on Wednesday due to my preparations for the conference. I called Laura on Wednesday morning and asked her if I could come in on Wednesday instead of Thursday and she said that I could. When I work out on Thursdays, she usually has three or four other patients that either she or her PTA are working with. On Wednesday, when I got there, there were a swarm of patients going through their physical therapy. What amazes me about Laura is how accommodating she is. She could've easily told me that she was too busy, but instead, she allowed me to come in and she still found time to spend a full hour with me one-on-one. My workout went well, but my neck seemed to be a little weak. It did slightly affect the rest of my workout, but when I would start getting fatigued, Laura would stop for a minute to let the rest. Even though I do get fatigued during my workout, if I stop for thirty seconds to a minute, the muscle seems to recover and I am able to continue my workout to finish all my repetitions. This week, Laura had to reevaluate me, which she has to do every four weeks. She measures in degrees how far I can lean from side to side, and how far I can lean over in the forward position and still be able to recover and sit backup in my wheelchair. I tell Laura, from time to time, that while I am at home, I can lean nearly all the way forward and still be able to sit backup in my chair without too much difficulty. During the times that she has reevaluated, I can only lean over just a little bit and still be able to recover and sit backup in my chair. This is what happened to me on Wednesday when she did her reevaluation. On Wednesday evening, while at home, I had one of my caregivers record me leaning forward in my chair. As they were filming with my cell phone, I leaned nearly all the way forward and sat back up in my chair, and I did this three times in a row. On Thursday, I had to go back to see Laura because the representative from the wheelchair company was scheduled to meet with the both of us to take measurements for my new wheelchair cushion. After he finished taking all the measurements, and after he left, I showed Laura the video of me leaning forward. She seemed to be pretty shocked at the fact that I was able to accomplish this without too much difficulty. She looked at me and asked me why I couldn't do this during her reevaluation, and she had a big smile on her face. I told her that I knew that she didn't believe me, and to be honest with you, I was starting to doubt it myself. Next week, I'll resume my normal Thursday workouts. While the representative was taking measurements for my new wheelchair cushion, he made a comment to me that made both Laura and I smile. He told me that it seemed that I had good control over my core muscles because I was able to reposition myself in my chair. He told Laura that a lot of people with SMA have difficulty doing this because of the lack of control with their core muscles. I told him that these were some of the muscles that Laura and I were working on, and he told Laura that it looked like she was doing a great job. That one compliment that he gave to both Laura and I made the physical therapy and the hard work that we've been doing worth it. I wasn't necessarily fishing for a compliment, but I will say that it was nice to hear that my physical therapy is proving to be beneficial.

In this week's video, I’m going to be introducing everybody to Scholar Rock, and their new drug, SRK-015.  Currently, Scholar Rock is going through a phase 1 clinical trial of their drug, and if successful, they plan on initiating a phase 2 clinical trial during the first quarter of 2019.  Scholar Rock is claiming that their drug has the potential to not only help build muscle mass, it potentially will have the ability to reverse some of the damage that has already occurred in those of us who suffer from SMA.  Scholar Rock still has to go all the way through the FDA approval process before their drug becomes an actual treatment.  Even though this may be a year or two before they get to the treatment stage, everyone with SMA should be excited about the potential that this drug could hold for each and every one of us. Click HERE to view my video.

Friday, June 15th and Saturday, June 16th, I spent nearly twelve hours each day attending the 2018 Cure SMA Annual Conference. This was my first conference that I attended, and I can say without a shadow of a doubt, it was one of the most rewarding experiences of my life. I had the pleasure of meeting nearly fifty individuals who subscribe to my YouTube channel, along with countless others that left me feeling fantastic regarding the future of those of us who suffer from SMA. In the next few days, I'll be doing a podcast on my SoundCloud account, and when I finish with the, I will update my website and put the link in the Youtube VLOGS & Podcasts page. This podcast will detail my thoughts and feelings as I went through this two-day event.

I hope everyone had a fantastic week and I hope you do something for yourself this upcoming week that's going to make you a better person.


Monday, June 4 Through Sunday, June 10 - Every Monday, when I wake up, I try to tell myself that I'm going to have a great week. This week, my dreams came true. My schedule is getting busier each day, especially since I'm trying to prepare for the upcoming 2018 Cure SMA annual conference. Instead of working on one video for my YouTube channel and one video for the SMA News Today YouTube channel, I went ahead and prepared the second video from my YouTube channel, which will be uploaded one week from today. I knew that if I didn't prepare another video early, I wouldn't have enough time during the week because I'll be at the conference all day on Friday and Saturday, June 15th and 16th. To my surprise, I was able to get all of my videos completed and ready to upload.

At approximately 1:30 AM on Wednesday morning, June 6, I was rattled out of my bed by the sounds of baseball size hail smashing into my windows and on the roof of my house. I knew that this was not pea size hail, because I couldn't even hear myself yelling across the house. One of my caregivers came into my room while the hail was demolishing the roof of my house. We sat in my room and listened as mother nature took her frustrations out on my house and everything that was in my backyard. After the sun came out, I was surprised to find out that the forty solar panels in my backyard were not shattered into little pieces. When my roof company came out, the owner of the company told me that I not only need a new roof, I also needed new gutters. They were also going back to replace four solar electric attic vents which are nearly $900 a piece. When my insurance adjuster came out, he told me the same thing that my roof company told me, but my insurance adjuster also said that they were going to pay to have my fence power washed and re-stained. Luckily, I have a $500 deductible for wind and hail damage. Earlier in the year, I almost went with a 2% policy on my house, but since I live in Texas, and we always have severe weather during the springtime, I decided to go ahead and keep my $500 deductible, even if this meant paying an extra $400 per year on my homeowners insurance. Luckily, I'm only going to have to pay $500 to get everything fixed, versus paying $6000 if I had gone ahead and accepted a 2% policy on my house. That was one gamble that I'm glad I did not take. I know that my insurance company is going to take care of all of the damages, but it's so disheartening to hear your house being destroyed and not being able to do anything about it. I'll probably get all of the damage repaired in the next couple of weeks. 

On Thursday, I went to work out with Laura. This is the first time that I've worked out with Laura for three weeks. Three weeks ago, Laura was doing our civic duty by serving on a jury. During the time that she was,, I worked out with her Physical Therapy Assistant, Emily. Last week, due to my busy schedule, I was unable to go to work out. In last week's journal entry, I told everyone that I hated missing work out last week. Any time that I miss a workout, I feel that I'm not doing my body justice. Working out for me is not only a stressed, it's also a way for me to get out of the house and do something that I feel is constructive. Everyone that works at Laura's facility have great attitudes and are a lot of fun to be around. This week, when I went to workout with Laura, it felt like I hadn't missed a beat. The only exercise that gave me a little difficulty was the one where Laura works on my back and shoulder muscles as she pushes my head forward. Even though this muscle did fatigue, after resting, the muscle recovered and I was able to complete all of the repetitions that I needed to do. Other than that one exercise, all of my other exercises went without a hitch. Laura and I were scheduled to meet with one of these certified representatives of NuMotion. This was the representative who was going to measure me for my new wheelchair cushion. The day before I went to work out, they called and said that there was a scheduling conflict and that they would not be able to meet with me and Laura until next Thursday, June 14. This really didn't surprise me because this company, NuMotion, is one of the worst companies to deal with. The only reason why I am dealing with this company is because they are the only one who accepts my insurance. I have had to deal with this company in the past and their lack of customer service, has left a sour taste in my mouth many times. When I ordered my new wheelchair from them nearly 3 years ago, they not only wrote down two of the measurements incorrectly, they also ordered the wrong color. I ordered maroon red, and when I got the wheelchair, it was the same color blue that I had on my old wheelchair. Of course, trying to tell them that they made a mistake was like French kissing and alligator. While they gave me $300 off the purchase price, I would have gladly paid the money to get what I had originally ordered. Hopefully, they'll be able to keep their word and make it to my therapy session next week. In one of my podcasts, a few weeks ago, I talked about my frustrations with this company. Click HERE to listen to my podcast. I think you'll get a kick out of listening to it. By the way, in my podcast, I didn't mention this company's name like I did in my journal entry, but what are the odds of someone from that company listening to my podcast or reading my website. Either way, I'm not really worried because if I can save any of you from having to deal with this company, then I'm okay with it.

As I stated at the beginning of my journal entry, I worked on two videos this week for my YouTube channel. In this week’s video, I’m giving my subscribers and followers detailed information regarding the importance of getting enough protein in their diets. After I finished my second loading dose of Spinraza, back in October 2017, my doctor told me that since I’m now receiving the protein that my body needed to not only sustain muscle, but to also build new muscle, she recommended that I begin physical therapy. Once I started physical therapy, my therapist put me on a high-protein diet and she also recommended that I supplement my diet each and every day with a high protein shake. In my presentation, I go over the different protein shakes that I’ve researched and I give you my recommendations as to the ones that I think would be beneficial. I not only review the protein in each one of the shakes, I also review the amount of vitamins and nutrients that you will be receiving if you drink these particular protein drinks.  NOTE: I am not a doctor, and I do not give medical advice on my YouTube channel. Before starting any physical therapy regimen or changing your diet, you need to speak to your physical therapists and your doctors. Click HERE to view my video.

I've been spending a little time working on my podcasts. If you haven't already listened to them, please check them out and give me your opinions. Click HERE to go to my podcast page. This upcoming week is going to be busy for me. Thursday and Friday of this coming week, I'll be attending a conference, so the rest of my week is going to be trying to catch up on all the things that I need to get done before going to this conference. Even though this week is going to be busy, I'm going to try to do something for myself to make me a better person. My hopes and prayers are that you will do something for yourself this upcoming week that will make you a better person.