Monthly Journal - June (2018)

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.