Monday, Apr. 23 thru Sunday, Apr. 29 - While this past week was extremely busy for me, I managed to get through it without too much difficulty. In last weeks video, I told my subscribers and followers that I went to see a vascular surgeon for the problem that I was having in my right leg regarding numbness and pain. The vascular surgeon ruled out a blood clot, but to rule out an aneurysm in my right leg, he would have to schedule me for a CT scan at the hospital. This past Wednesday, I had the CT scan performed. About two hours after I returned home from the hospital, my vascular surgeon called with the results. He told me that he had good news and bad news regarding the results. While I was hoping that they would find something that they could either repair with medication or surgery, hearing the doctor tell me that there was some bad news literally made my heart stop for a brief moment. He explained that the good news was that there was no aneurysm found in the scan, and that all of my veins and arteries were clear of any calcification or plaque. The bad news was that I had severe muscle damage in my right hip and that much of the muscle that used to be in my buttocks has now turned to fatty tissue and scar tissue. Since I don't have a lot of muscle in my buttocks, the doctor explained that I'm nearly sitting directly on the nerves that are running into my leg and that this was causing the numbness and the pain that I was experiencing. I asked the doctor if there was anything that he could do regarding this issue, but he told me that from a medical standpoint, there was no surgery or medical procedure that could help me. He suggested that I look into a new seat cushion for my wheelchair. I will discuss this further when I talk about my physical therapy. My vascular surgeon did explain that they can prescribe muscle relaxants for me if the pain became too unbearable. With the opioid crisis happening in today's society and the number of people that are getting addicted to opioids, I told my doctor that I would rather find alternative ways of dealing with the pain if at all possible. I'm not completely ruling out the use of an opioid, such as and muscle relaxer, if and when the pain gets too bad, but until that happens, I'm sure that I could find some alternative measures that can help.
I went to workout as normal on Thursday with Laura. I went over my test results regarding my CT scan with Laura because I wanted to get her opinion on the proper kind of cushion that I should try. I trust her opinion because her sister is a paraplegic and I was sure that Laura dealt with this issue in the past. She recommended a Jay Active cushion because you not only sit on styrofoam, you also sit directly on a gel insert. Where you sit on your buttocks, the styrofoam is carved out and a gel insert is inserted so that your buttocks and tailbone sit directly on the gel insert. Laura said that this gel would provide better support and more comfort to my tailbone, which may help eliminate some of the pain that I'm going through. Later next week, I will start calling different companies that carry these particular cushions, so that I can possibly set up a time for them to come out and let me try this cushion out for a few days. Once I find the right cushion, I will let everyone know which one I selected and I will also provide pictures and documentation showing the reason why I picked that particular cushion.
After receiving the results of my CT scan from my doctor, I began working on this week's video. In this week’s video, I reviewed the results of my CT scan that was performed last Wednesday, April 25 at Baylor Scott & White Hospital in Irving Texas. Also, in this week’s video, I’m now shooting in 1080p resolution which will hopefully clear up some of the blurriness in my YouTube videos. I give my subscribers and followers a choice of either 720p or 1080p resolution. Make sure you give me your opinion in the description of the video so that I know which one you like best. Click HERE to view my video.
Please be sure to do something for yourself this week that will make you a better person. Also, make sure that you do something for someone else that will not only improve their life, but it will also help them to improve their life. In next week's video, I will be discussing the upcoming Cure SMA conference that will be held in Dallas Texas. Next week's video should be packed full of information that I'm sure each and every one of you will find helpful. Keep a smile on your face and try to make the upcoming week better than the one that you just finished.
Monday, Apr. 16 thru Sunday, Apr. 22 - Looking back over the past week, I can say without hesitation that getting older is for the birds. A good friend of mine told me that you know you're getting old when you go to more funerals that you do weddings. Over the past few weeks, I've seen more doctors than I have in a long time. While some of these doctors that I see are at the hospital when I go in for my treatments, but if you include my internist, neurologist and vascular surgeon that I've seen over the past couple of weeks, I can say without too much reservation that I have made car payments for each one of these doctors. On Thursday, April 12, I received a phone call from my neurologist's secretary informing me that it was time for me to come in for my yearly face-to-face meeting. I went to see my neurologist this week so that she could not only do her strength test and physical examination on, but she could also rewrite my prescription for Spinraza. After her examination, she performed a strength test on me and compared those results with the results that she got when we first started. To her surprise and to mine, I have improved in every category. My grip strength, biceps and triceps strength, shoulder, back and neck strength, range of motion and core strength all improved significantly. While nobody enjoys going through these types of tests, it was quite satisfying to know that other people are seeing the positive results regarding not only my treatments, but also my physical therapy. My neurologist told me that while the Spinraza treatments are definitely doing me some good, she also told me that my physical therapy workout schedule has also been a key factor as to my increase in strength. Since I improved on all of my strength tests, she went ahead and rewrote my prescription so that I can continue my treatments. She also faxed a copy of my current and past strength tests to my physical therapist, Laura, so she could see the improvements that have occurred over the past four to five months.
I finally received a phone call from Baylor Scott and White Hospital in Irving Texas informing me that my CT scan was scheduled for this coming Wednesday, April 25. My procedure is scheduled for 3 o'clock in the afternoon and I have to report to the hospital at noon so that they can put a pick line in my left arm and do all of the prep work that they need to do before the procedure begins. My hopes are that they find an aneurysm in my leg. I never thought that I would ever hope that doctors would find it aneurysm, but if it is an aneurysm that is causing problems, they can correct. If it is not an aneurysm, this will be a problem that I have to live with for the rest of my life. The vascular surgeon told me that if it is not an aneurysm, it's probably muscle and nerve damage caused by me sitting in a wheelchair for nearly 53 years.
I went to workout on Thursday with Laura. All of my exercises went smoothly and Laura even added two new exercises to help me increase my oblique muscles so that I can better stabilize myself while sitting in my wheelchair. The exercise involves taking the red resistance band, and as I sit straight in my chair, Laura tries to pull me toward her. My job is to resist going either left or right depending on which side we are working on. We started out with one rep for three minutes on each side, and we will increase the number of reps until I am able to perform this exercise without her shifting my body weight while sitting in my chair. As I increase my strength in this exercise, we will move to a different resistance band until we get to the black band which is the one with the most resistance. While it may take me a while to get to that point, it's another exercise that's going to help me in my daily life. I used to be very hesitant in going down my wheelchair ramp in my van, especially when parked on a decline. When this would happen, I would have to have somebody put their hand on my chest to make sure that I did not fall forward while going down my ramp. Now, I can go down the ramp without having anyone assisting me. The exercises that Laura and I are doing are definitely helping me.
In this week's video, I give my subscribers and followers an update with regards to what's happening in my life, including my upcoming CT scan and my visit to my neurologist that occurred earlier this week. My CT scan is scheduled for next Wednesday, and I will include the results from this test, along with what doctors plan on doing if they find an aneurysm in my leg in next week's video. I received some exciting news from my neurologist regarding my physical strength, and I'm excited about sharing this information with those of you that follow me and subscribe to all of my social media accounts. Click HERE to view my video.
Make sure that you do something for yourself this upcoming week to make you a better person, and be sure to do something for someone else this upcoming week to not only improve their life, but to make them a better person as well. I hope that your upcoming week will be better than the previous, and remember, keep a smile on your face because we all have so much to look forward to.
Monday, Apr. 09 thru Sunday, Apr. 15 - This was one of the craziest weeks I've had in a long time. After going through my annual physical, my doctor detected a problem with the blood flow in my right leg. She gave me a referral to a vascular surgeon so that they could run some tests to determine what was causing my right leg, calf and ankle to go numb. Since I was unable to go to physical therapy until I went to the vascular surgeon, I've made sure that I got an appointment this week. My doctor did not want me to go to physical therapy since this problem could invented blood clot and she wanted to make sure that I did not exert myself too much to cause any further damage. On Wednesday of this week, I went to the vascular surgeon and after he examined me, he determined that it was not a blood clot. He told me that the problem that was causing all of my discomfort may be an aneurysm. He explained that while there is the main artery running down your leg that transports blood, there's another artery that acts as a backup or secondary route for the blood to take. The problem may be caused when too much blood is being pushed through this artery. When this happens, he explained that the artery will swell up, and the pain that I'm feeling is caused when the artery swells up and expands. The vascular surgeon is in the process of writing his instructions and he will submit his findings to the Interventional Radiology Department at Baylor Scott and White Hospital in Irving Texas. Once I make the appointment, after they call me, I will go ahead and they will perform a CT scan on my right leg. I informed the vascular surgeon that he needed to make sure that they had a lift that could get me out of my wheelchair and onto the CT table to perform the procedure. They will also insert a PIC line and my arm so that they can run contrast through my veins to make it easier to detect whether or not I have an aneurysm. If the scan does show an aneurysm, the vascular surgeon said that he will admit me into the hospital and they will do a surgical procedure to expand this artery so that he can accept the amount of blood flow that it needs to. I asked the surgeon to explain the surgery to me and he told me that it's similar to an angioplasty that they do on someone's heart. They insert a tube into the artery and once they get to the proper location, they expand a balloon in the artery to increase the size of the artery. He told me that this procedure is becoming more routine and I shouldn't have any problems if they have to perform this procedure on me.
Since the vascular surgeon found that my problem was not a blood clot, he wrote me a release so that I can go back and resume my physical therapy. On Thursday, I went to physical therapy with Laura. Since it had been two weeks since my last work out with her, and since I was unable to do any physical therapy at home during this time, she modified my work out to where it was not so intense. The only exercise that I had to decrease the number of repetitions that I normally do was my side exercise where I lean to my right. Laura wants to go easy on this particular exercise until I get the CT scan performed on my leg just to make sure that I do not aggravate an already sensitive area. The rest of my work out was normal and I had no problems completing all of my exercise. Since it and then a total of four weeks since Laura's last evaluation of me, she went ahead and reevaluate me so that she could send in the paperwork to my insurance company. Out of the five exercises that she evaluates me on, I improved my range of motion on two them, stayed the same on two of them and got worse on one of my measurements. She told me not to be concerned about the measurement that showed a decrease in range of motion because it'd been two weeks since I've done any physical therapy and she believed that this was the reason why this happened. She felt confident that I would improve on my next reevaluation.
I spent quite a bit of time this week working on Sundays video. This was probably the most difficult video that I've done so for on my YouTube channel because it is the subject that I had been wanting to speak about for a long time. It is also one of the longest videos that I've ever done on my YouTube channel as well. In this week’s video, I discuss the concepts of accepting the reality of life while living with Spinal Muscular Atrophy, and I also share what I did in my life regarding letting go of some of the fears that I live with on a day-to-day basis. Throughout my life, I’ve noticed that many people living with certain handicaps tend to dwell in self-pity. While it would be easy for me to throw my hands up in the air and let this disease take full control of my life, I refuse to let this happen because it would go against everything that I not only believe in, but it would go against everything that was instilled in me by my family while growing up. My hopes and prayers are that this video will give not only inspiration to some of you, but it will also help you by learning to accept your handicap and possibly learn how to release some of the fears that you too live with in your daily life. Click HERE to view my video.
I hope that everyone has had a fantastic week. Make sure that you do something for yourself this week to improve your life and make sure that you do something for someone else this week to improve the way that they live their life. Trust me, if you do this, you will not only feel good, it will make someone else feel good as well. I hope that everyone enjoys this week's video and I hope that it is a message that will find its way into your heart.
Monday, Apr. 02 thru Sunday, Apr. 08 - While I was hoping that this week would be better than the previous, it seems that my bad luck followed me into another week. Last week, I went to my doctor for my annual physical. While I was there, I told her that my right leg had been hurting for a long time. When I sit in one spot for a long period of time, my right leg tends to go numb from my calf all the way down to my ankle. This is been a problem for the past couple of years, but I never really gave it much thought because if I repositioned myself in my wheelchair, the numbness and pain would usually subside and go away. Lately though, the numbness and the pain are getting worse. After my physical, my doctor put my feet and these padded shoes that were connected to a heater. She turned the heater on to warm up my feet, then she put an oximeter on the second toe of each foot. The oximeter showed good oxygen levels on my left leg and foot, but it showed poor oxygen levels and decreased blood flow in my right leg and foot. She recommended that I go see a vascular surgeon so that they could examine my leg to find out why the numbness and pain were happening. Given her advice, she recommended a vascular surgeon in my area and I called and made an appointment for Wednesday, April 11. My doctor wants to rule out a blood clot or any kind of arterial blockage. She also told me that she did not want me to go to physical therapy until after I get the results from the vascular surgeon.
I called Laura on Tuesday and told her what my doctor told me. Laura told me not to worry about anything and to let her know what the test results revealed. I found out later in the week, that if the vascular surgeon found a blood clot or blockage, they would immediately admit me into the hospital so they could start me on blood clot medication and if necessary, schedule surgery. I haven't really been able to do any physical therapy for the last two weeks, and I really miss it. After physical therapy, I feel so much better. Not being able to physical therapy for the last two weeks has made me feel quite lethargic. Hopefully, the doctors will be able to find out what's wrong with my leg and correct it so I can get back to my normal schedule. NOTE: If for some reason the doctor decides to admit me into the hospital for treatment and/or surgery, next week's video could be delayed. If everything goes well and I am not hospitalized, Sundays video will be on time.
I spent a few days this week preparing my Sunday video. In this week's video, I give all of my subscribers and followers an update with regards to my bloodwork results from my physical that I did last week. In the PowerPoint presentation that I do in my video, I go back and gather my bloodwork results for my physicals in 2016 in 2017. Within the presentation, I show the results for three years and discuss what my doctor told me regarding these results. One of the questions that I had asked whether or not I felt that physical therapy was doing me any good. After viewing the presentation, I think I demonstrate how a change in my diet and going through physical therapy has definitely been a turning point in not only my physical condition, but my overall feeling of increased strength and energy. Click HERE to view my video. Toward the end of my video, I discussed a little bit about the topic for next week's video. Next weeks video will be the longest and most difficult video that I have done on my YouTube channel to date. The topic that I discuss is something that we will all think about at one point in our life, and to properly do this video justice, I will also be discussing a few of my religious views regarding this topic. I understand that you may believe in a different God than I do, and while I will never push you to believe and prescribe to what I believe in, I feel that if you watch this video in its entirety, the message that I give to everyone should be inspirational in some way, and I hope my message has an impact on your life.
I hope and pray that everyone has had a fantastic week. Please remember that all of us face challenges each and every day, and having a positive outlook on life and keeping a smile on your face will definitely improve the way that you handle difficulties, and in the way that you conquer these inevitable problems. I hope that you have done something this week to make you a better person, and I hope that you have done something for someone else that has improved the way they live their life. Thank you again for all of your support and I hope that your upcoming week is better than your previous week.
Monday, May 28 Through Sunday, June 3 - I'm not really sure if my time management skills have gotten worse, but it seems like there are not enough hours in the day to accomplish everything that I want. I remember back when I worked a full time job and then taught my college courses at night. Even with a busy schedule like that, I seemed to have enough hours in the day to get everything done. Now, I feel like a dog chasing his own tail.
In last week's journal entry, I told you that BioNews Services hired me to produce two videos per month for one of their divisions, SMA News Today. Every two weeks, BioNews Services will send me an article that they want me to review. These articles deal with current SMA related news topics, and anything relating to SMA itself. After thoroughly reviewing these articles, I will produce a short video where I not only review the article with you, I also give you my perspective and opinions. Since I am getting paid for my services, all videos that I do for SMA News Today will be branded under their YouTube channel. This past week, I turned in my first video. Click HERE to view my first video that I did for SMA News Today. While on the SMA News Today YouTube channel, please be sure to subscribe to their channel like you did mine.
Since I spent the majority of this week working on not only my normal Sunday video, and the video for SMA News Today, I also started preparing for everything that I needed to get done before going to the 2018 Cure SMA Annual Conference during the second week of June. Unfortunately, due to my schedule, I was unable to go to work out with Laura this week. Most of you know how much I enjoy working out with Laura, so actually having to cancel out with her because of my busy schedule did not make me feel good at all. Come hell or high water, I will do my best not to ever miss another workout. This coming Thursday, June 7, I will go to work out during my normal time, then at 2 o'clock in the afternoon, Laura and I will meet with the certified representative who will be taking the measurements for my new wheelchair cushion. My insurance requires that a certified rep who is trained in measuring and fitting new equipment meet with me while I'm with my physical therapist. After all the measurements and paperwork have been filled out, my insurance company will also require Laura to sign off on the paperwork stating that she was present and that she observed the entire process. Hopefully, the company that I'm getting this new wheelchair cushion from will be able to provide me a sample of this wheelchair cushion for a few days so that I can try it out before actually placing the order. As I said last week, once you place an order for medical equipment, many of these companies will not allow you to return for a refund, so trying this cushion out for a few days, will help keep me from ordering something that ultimately will not work to help eliminate the pain in my right leg. If, after sitting on this cushion for a few days, I find out that it is the one I want, I will place the order and will probably receive it within two weeks.
In this week’s video, I discuss the results of a phase 1 clinical trial from AveXis, regarding their drug AVXS-101. Results from the first clinical trial of AVXS-101, a gene therapy for infants with spinal muscular atrophy (SMA) type 1, reveal dramatically improved survival as well as motor skills in most of the babies involved in the drug’s first clinical trial. The Phase 1 trial (NCT02122952) treated 15 infants with SMA Type 1, with the gene therapy called AVXS-101, developed by AveXis. This treatment consisted of a harmless virus that carried a functional SMN gene. The virus was injected into the bloodstream, and entered the central nervous system to deliver the gene. All children were 6 months old or younger; 12 of the 15 received a higher dose of AVXS-101, while 3 received a lower dose. I not only discuss the results of this phase 1 clinical trial, I also give my perspective and opinions as to whether or not this potential drug could possibly benefit those of us who are adults who have SMA. While these are just the results from their phase 1 clinical trial, promising results, even in the early stages such as this one, are important for all of us to pay close attention to. Click HERE to view my video. The article I used for my video has been uploaded to my website for you to view. Click HERE to go to my SMA Related Web Articles page to see the article as a web link. Click HERE to go to my Webpage PDF Files page to see this article as a PDF File.
I know that my schedule will be hectic the next couple of weeks, but after I finish with the SMA conference which is scheduled in two weeks, along with getting into the routine of creating videos for SMA News Today, I know that things will settle down. My hopes and prayers are that you had a fantastic week and I hope that your upcoming week will be better than the previous. Don't forget to do something for yourself this week that will make you a better person, and also, do something for someone else to make them a better person.
Monday, May 21 thru Sunday, May 27 - This week was an extremely busy week for me. The weather was absolutely beautiful in Dallas. I found myself wanting to get out and run errands so that I could soak up a little free vitamin D that the sun gives us for free. Overall, my physical strength and stamina are doing great and I've also noticed that my energy level is maintaining itself throughout the entire day. While I know that I'm getting stronger in my core strength, I don't get as fatigued and lethargic as I used to before starting my injections.
When I went to work out this week, Laura was on jury duty, so I worked out with her physical therapy assistant (PTA) Emily. Emily and I did all of my exercises, and my core muscles and my neck and shoulder muscles held up great during the entire workout. My neck and shoulder muscles would weaken and fatigue after about eight or ten repetitions of the exercises that we do to strengthen my neck muscles, but after resting for thirty seconds, those muscles recovered and I was able to continue with not only that particular exercise, I was able to continue the remainder of my exercises and finish out my entire workout. Last week, when these muscles fatigued, it made it very difficult for me to continue. This week, everything went great.
In this week’s video, I’m giving my subscribers and followers four updates regarding things that happened to me this week. In the first update, I’ll discuss my workout and how this workout was different than a workout that I had last week. In the second update, I discuss my new wheelchair cushion. Things are finally moving forward with regards to me getting a new cushion and hopefully, this will provide some relief that I need for my right leg. The third update will consist of information regarding the upcoming 2018 Cure SMA conference that will be held in Dallas in just a few weeks. Registration begins on Wednesday, June 13, and the event is scheduled to run through Sunday, June 17. In the fourth and final update, I explained a new YouTube channel that is expected to be up and functional in the coming weeks. A few weeks ago, I told everyone about SMA News Today, and their website where those of us with SMA can go and discuss different topics, answer questions from others and even ask questions that we need answers to as well. The company that owns SMA News Today hired me to produce two videos per month for their new YouTube channel. The information that I give you in this week’s video will provide further information as to how you can subscribe to their YouTube channel and get some great information regarding various SMA topics. Click HERE to view my video.
I hope everyone had a fantastic week and I hope that your upcoming week is better than the previous. Do something for yourself this week to make yourself a better person, and do something for someone else this week that will not only make them a better person, it will help them feel better about themselves. If you do this, trust me, it will definitely help you make yourself a better person.
Monday, May 14 thru Sunday, May 20 - If there had been a way for me to go back to sleep and have Monday, Tuesday and Wednesday turn out to be a bad dream, I would have gladly taken that option. On Monday and Tuesday, I spent the majority of the day talking to my insurance company regarding the purchase of a new wheelchair cushion. After my CT scan a few weeks ago, the test results revealed that I had severe muscle damage to my right hip. Due to the fact that I have lost a lot of muscle in both my right and left hips, I am now sitting on the bone and nerves in my right hip. This is causing my right leg, calf, ankle and foot to go numb on me. My doctor and my physical therapist, Laura, recommended that I get a new wheelchair cushion that would provide me better support. They recommended a cushion that has medical gel, because if I sit on this gel, it will redistribute the pressure on my right hip, which may relieve some of the pressure that is causing my problems. All day on Monday and Tuesday, I called different companies that handle this type of cushion, and nobody returned my phone calls. You would think that somebody is willing to take my money in exchange for a new wheelchair cushion, but I am finding that this is turning out to be a challenging task.
I usually work out with Laura on Thursdays, but she was going to be away from her practice beginning Thursday through the end of the week. Instead of going to work out on Thursday, I went on Wednesday. I was anticipating having a great workout, like I usually do, but this week's workout presented a few challenges that caused me to get discouraged. We were working on the muscles in my neck and shoulders, and we do four different exercises that focus on these particular muscles. In the exercises, Laura will stand behind me and put the palm of her hand on the left and the right side of my head. If her hand is on the left side of my head, she will push my head to the right. My job is to resist her from making my neck bend to the right. The second exercise is the same as the first, only she pushes my head to the left. This particular exercise helps to build the muscles on the side of my neck. The next exercise we do, Laura will stand on my side and place the palm of her hand on my forehead, and she will try to push my head back. While she's doing this, I have to keep my head straight and not allow her to push my head backward. These three exercises I can usually do without any problems. The exercise that I have difficulty with is when Laura will place the palm of her hand on the back of my head and she will push my head forward. I can usually do six to eight repetitions of this particular exercise before my neck muscles start to fatigue. Usually, after about a minute's worth of rest, my muscle will recover and I can continue my exercises. This week, when we worked on this exercise, my neck muscle did not recover as fast as it usually does, and this caused me to have difficulty with the rest of my exercises. This discouragement got to me and I felt like the rest of my exercises were just a waste of time. Laura told me not to be discouraged and that everything would be okay. She told me that I was just having a bad day and that next week it would be better. No amount of encouragement that Laura was given me seemed to help, because I let this difficulty that I was having take control of the rest of my day.
In this week’s video, I’m giving everyone an update regarding what I did last week. While I try to be as optimistic and upbeat as I can, I’m no different than anyone else. Sometimes, I let a few bad days dictate how the rest of my week will go. The message that I give in this week’s video is one that I gave in previous videos. The reason why I revisit this particular subject is because I myself, had to practice what I preach. It’s difficult for most of us to shrug off negative things that happened during the week. Since I’m no different than anyone else, I need to remember that for me to improve what happens to me during bad times is something that I have to take control of. Letting one negative thing dictate how the rest of your week will go is something we all need to work on. Two years ago, we as SMA patients, had little to look forward to. Now that we have one active treatment for our disease, and with more coming in the not so distant future, the light at the end of the tunnel is getting brighter for each and every one of us. I hope that my message can improve the way that you not only look at problems, but the way that you live your life. Click HERE to view my video.
I know that this topic has been covered numerous times on my YouTube channel, but this is a topic that I think is important enough to return to every once in a while. My hopes and prayers are that each one of you had a fantastic week and I hope and pray that you will make this upcoming week better than the previous.
Monday, May 7 thru Sunday, May13 - It amazes me how fast a week can go by. Every day was filled with more activities than time to accomplish these tasks. I never understood how a 24-hour day can go by so quickly, not to mention the 168 hours that are in a week. As I mentioned last week, I am actively searching for a new wheelchair cushion that will help me with the pain and numbness that I'm experiencing in my right leg. Like last week, nobody returned my phone call regarding this wheelchair cushion. I'm actually believing that nobody wants my money, as strange as that may sound. I'm willing to spend the nearly $500 out of my own pocket to purchase this cushion, yet nobody seems interested in ordering and providing this cushion for me. I'm sure that I will find somebody in the next couple of weeks there is willing to take my money in exchange for this cushion. It used to be that companies were willing to work with you and help you in any way possible, but now, customer service has been thrown out the window.
Before I knew it, Thursday rolled around and it was time for me to go work out with Laura. When I got there, Laura had to perform her four-week reevaluation on my progress. After her evaluation, she told me that I have improved on every single exercise except for the one were I have to lean to my left side. While I didn't show a decrease in my range, I didn't show an increase either. Given all of the improvement, Laura was happy with my current status. We are now focusing much of our attention on the muscles in my neck. The muscle in my neck that keeps my head from falling forward is the muscle that I want to improve because if I can keep my head back while going down a steep ramp, this will provide me better support and balance. We are also doing new exercises where I lean forward, and instead of Laura pulling me back up to a seated position, she now has me resist from coming back to a seated position which forces the abdominal muscles to stay active for a longer period of time. She'll have me resist and tighten my abdominal muscles for 10 seconds, then she will let me relax for a second or two and then resist her pulling me back up to a seated position for another 10 seconds. We do this for a total of two minutes, and trust me, it's quite a workout. I'm very happy with the amount of progress that I've made over the past few months and I look forward to continued success.
Since I produced a mid week video on Wednesday, my Sunday video is going to be a little different. I’m going to be introducing everyone to a website that was introduced to me a few weeks ago. A gentleman by the name of Kevin Schaefer contacted me after he read an article on the Internet where someone discussed top bloggers who cover topics related to SMA. When Kevin contacted me, he told me about his story and he also introduced me to a website that he not only is actively involved with, he’s also a moderator for this particular website. This website is a great resource for those of us with SMA. This website allows us to not only answer questions from others who have SMA, it also allows us to ask questions that we may need answers to as well. I hope that all of my subscribers and followers to my YouTube channel will join this website and take advantage of all the great information that they have available for us. Trust me, you’ll be glad you did. Click HERE to view my video.
To finish out my week, I spent Saturday with my good friend Kristine and her family. Kristine's sister Kimber came to my house and drove me to Kristine's, but unfortunately, Kimber had to leave early. I spent the entire day with Kristine, her husband, her two sons and daughter and her new daughter-in-law. We didn't really do anything except sit around the house and spent time with each other. It was so relaxing to just be with them and enjoy their company. I'm finding that as I get older, we don't really have to keep ourselves busy to be entertained. Having the time to sit and catch up on past memories and to enjoy each other's stories, made for a relaxing day that I truly enjoyed. I hope everyone had a great week. I hope that you did something for yourself this week that made you a better person. I also hope that you did something for someone else this week that will improve their life. Remember, try to make a stranger smile each day, because if you can do that, you'll find that you yourself will also smile.
Monday, Apr. 30 thru Sunday, May 6 - The weather this week had a difficult time making up its mind what it wanted to do. The beginning of the week was sunny and warm, Thursday and Friday we had severe thunderstorms, and the weekend was absolutely beautiful. While the rainy weather put a damper on some of my plans, I was thankful to get the rain. Any time the good Lord wants to water my yard and save me some money on my water bill, I will gratefully accept it. I began taking full spectrum CBD oil this week hoping that it would help with the numbness and pain that I'm experiencing in my right leg. Many of the people that I spoke with regarding taking this oil told me that it would probably take three or four weeks before I noticed any difference. My legs felt pretty good this week, but there were still a few days where I noticed that nothing seemed to help. I began calling some of my local wheelchair repair and medical supply businesses looking for a new wheelchair cushion. Laura, my physical therapist, recommended that I look into a cushion manufactured by Jay. She recommended the Jay Active cushion, but as I started looking into this particular cushion, I learned that it was 4 inches thick. The cushion that I have been using in my wheelchair is only 2 inches thick, and when I tried 4 inch cushions in the past, I felt like I was sitting too high in my wheelchair. If I sit any higher than I am now, I feel like my balance and equilibrium are thrown off. After calling Sunrise Medical, they recommended the Jay X2 cushion. This particular cushion is only 2 1/4 inches thick, and it doesn't have a rigid bottom, which means that it will conform to my sling seat that I have in my wheelchair. Any cushion with a hard bottom will not work in my wheelchair because of the sling seat. After learning about this cushion, Sunrise Medical gave me the name of a few companies in my area that handled this particular cushion. One of the companies had gone out of business and surprisingly, the other two companies didn't seem very interested in trying to help me. I told them what I wanted and they said they would look into it and call me back. After waiting a few days, I figured neither one of these companies wanted my business. I'm sure I can find another company there will be more than happy to take my money. I'll begin calling other companies this coming week because I would like to get this cushion as soon as possible so that I could try it to see if it will provide me some relief.
As I was waking up on Thursday morning, I had barely opened my eyes when a crack of thunder rocked my house and damn near shook me out of bed. After getting dressed, I made my way to my home office and when I entered the room, I couldn't even see the back of my fence in my backyard because the rain was coming down so hard. I watched my rain gauge go from 1/100 of an inch to nearly an inch in less than 15 minutes. I was getting nervous that I wouldn't be able to go to work out with Laura because of the potential street flooding around my area. The rain began to let up before I was scheduled to leave and I was able to make it work out without any problems. Laura and I seemed to breeze through all of my exercises rather quickly on Thursday and I thought we were going to be done early, but to my surprise, she told me that she had a new exercise for me. Laura said that we were going to start working on the muscles in my neck because these muscles, while being strong enough for me to keep my head up and balanced properly, both she and I felt that by improving and strengthening these muscles, it would help me to be able to lean forward and be able to get back into a seated position. Right now, if I lean too far forward, the muscles in my back tend to give out, and if my head falls forward, it is virtually impossible for me to get back to a seated position. Laura began by standing on my left side and she put her left hand on my shoulder to stabilize me. She then put the palm of her right hand on the back of my head. She told me that she was going to try to push my head forward and my job was to keep my head straight and to not let her push my head forward. She set a timer for one minute and then she would try to push my head forward for 10 seconds, then she would let me relax for three seconds before pushing my head forward again for another 10 seconds. She kept repeating the same exercise for the entire minute. Again, standing on my left side, Laura put her right hand on my shoulder to stabilize me and she put the palm of her left hand on my forehead. She then told me that she was going to try to push my head backward and I was supposed to resist her. She would push for 10 seconds, trying to make my head go backwards, then she would let me rest for three seconds before repeating this motion for one minute. We did the same exercise where she would try to push my head to my left and to my right. After she finished, my neck was tired, but my muscles seem to recover quickly. She told me that over the coming weeks, we would not only increase the amount of time per exercise, we would also increase the number of repetitions. While increasing my core strength is important, having weak muscles in my neck will make it difficult for me to improve too much more than I already have. If I'm able to increase the strength in my neck, we can then begin doing more difficult exercises to improve my core strength.
In this week's video, I go over the agenda for the Cure SMA Conference that will be held in Dallas Texas in June. While Cure SMA has been hosting this conference for many years, this is the first time that I can recall them hosting it in my hometown. Since traveling is very difficult for me to do, I'm thrilled that they chose Dallas for this year's conference. As I go through the agenda, I also highlighted the events that I'm going to participate in. After going through the agenda, I then discuss good news from Cytokinetics Pharmaceuticals. Cytokinetics has decided to announce the results of their phase 2 clinical trial of their drug Reldesemtiv. I give my opinion as to why I believe they have chosen such a large venue to make this announcement, and I also give my prediction as to what Cytokinetic's next move will be regarding their potential treatment. I truly believe that if you watch my video and listen to my message, you will be as excited as I am. Click HERE to view my video.
Even though I had a frustrating time trying to locate another cushion for my wheelchair this week, overall, I had a damn good week. Every day that I wake up without bugs and dirt on my face, I count my blessings. I hope you did something for yourself this week that made you a better person, and I also hope that you did something for someone else this week that not only made them feel better about themselves, hopefully, this also inspired them to become a better person. Make it a point each day this week to make at least one person that you don't know smile. You'll find that even if you're having a bad day, if you can make a stranger smile, you will find it easier to do so yourself.
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.
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