Monday, Jan. 27, Through Sunday, Feb 2 - It's hard to imagine that January is coming to an end. Now that February is arrived, I'm sure that March will be knocking on my door in a very short amount of time, or at least, it will feel like that. This was a crazy week, filled with conference calls, deadlines, and even a bit of tension at work, but overall, it was a week that I survived. My energy level and strength are doing great, and it's hard to believe that I go back into the hospital in about 4 weeks for my 11th Spinraza injection.
When I went for my workout this week, Emily's new physical therapy student, Christian, worked with me on all of my core strengthening exercises. There's not a lot to report regarding these exercises, other than I'm slowly progressing from one color of resistance band to another, and each color becomes more and more challenging. Next week, Emily and Vikki will transfer me from my wheelchair to the therapy table, and we will do all of my range of motion and stretching exercises. 2 weeks ago, they had me sitting up on the table with my legs in front of me, and we will slowly be crossing my legs, in an Indian style pose, and I'll have to lean forward as far as I can to stretch the muscles in my hips. I'm actually quite surprised at the amount of flexibility that I have been my hips and my legs, but I guess all of these stretching exercises have helped.
VERY IMPORTANT - I'm currently working with a nonprofit called RARE Courage. I've developed a survey for them, they will also be available on another nonprofits website called All Wheels Up. The mission of RARE Courage, is to be an advocate for people with rare and life-threatening diseases, and All Wheels Up, is a nonprofit it's working toward getting the FAA and the airliners to make changes to their safety policies, so that those of us that are in wheelchairs, can remain in our wheelchairs during the flight, instead of having to transfer out of our chairs and having our wheelchairs loaded into the luggage compartment of the plane. RARE Courage is teaming up with All Wheels Up, so that we can gather data to present to legislators in our attempts to make these changes. If you or someone that you know is in a wheelchair, I invite you to please take this survey. The link to the survey can be found on my homepage, directly below the update section. This survey takes less than 5 minutes, and the data that we could receive from the survey, might help those of us who want to be able to travel just like the able-bodied.
I've updated the flash briefings that I did for BioNews Services. Click HERE to listen to the flash briefings.
I hope all of you had a fantastic week. Please do something for yourself this upcoming week, it will make you a better person. God bless you, and I'll see you next week.
Monday, Jan. 20, Through Sunday, Jan. 26 - This was an amazing week, filled with great strength, energy and blessings. You can see by the picture in my journal entry, Emily, Vicki and myself started a new exercise which I'll talk about in just a moment. I'm also extremely excited about this week's video. It talks about some exciting news regarding an upcoming clinical trial that may hold some enormous potentials for those of us that are on our Spinraza treatments.
When I went for my workout this week, Emily, and her assistant Vicki, transferred me from my wheelchair to the therapy table. Now that my balance is improved, we've decided to start focusing on the abductor and adductor muscles in my hips and legs. The goal of this exercise is to help me to be able to shift some of my body weight in position while I'm in bed. I lost the ability to roll from side to side many years ago, and I now have to rely on others to help me if I need to reposition in bed. Working the abductor and adductor muscles, allow me to bring my knees together and to separate my knees. We're hoping that by increasing the strength in these muscles, I may regain the ability to at least slightly reposition in bed, without needing assistance from others. This was the focus of Emily's January article for the SMA News Today HCP site. Her article is scheduled to publish sometime this week, and I will provide a link to this article in next week's journal entry.
In this week's video, I'm giving some important information regarding an upcoming webinar that will be hosted by Cure SMA and Biogen Pharmaceuticals. This webinar will discuss Biogen's new upcoming clinical trial called DEVOTE. This clinical trial will look at increasing the dosing amounts of Spinraza that we, as patients received during our treatments. At the present time, all of us that are on this treatment, received the same dosing amounts of Spinraza, which is 12 mg. Questions have been asked as to why those of us that are adults are receiving the same dosing amounts as children and toddlers. Now the Spinraza has been out for nearly 3 years, Biogen is looking at increasing the dosing amounts for all of us that are on this treatment, and this could be an exciting time for all of us who have SMA. Click HERE to view my video.
IMPORTANT INFORMATION - All of the information that I'm going to be discussing in my video, can be found in the description section of my video. This webinar is very important for all of you, so please register for this webinar, because the information that they are going to be discussing will be information that you can share with your families and your doctors.
I've updated the flash briefings that I did for BioNews Services. Click HERE to listen to the flash briefings.
I hope that all of you had a fantastic week. Please do something for yourself this upcoming week, that will make you a better person. God bless you, and I'll see you in a couple weeks.
Monday, Jan. 13, Through Sunday, Jan. 19 - This past week, I had to get the majority of my work completed by Thursday, because my boss flew into Dallas for a 4 hour meeting with me at my house. With everything that I had to do to get ready for his meeting with me, it seemed as if I was chasing my tail for the majority of the week. Our meeting went great, and we discussed what my goals and objectives are for the division that I'm responsible for with BioNews Services. There's a lot of changes happening, but all of these changes are going to make BioNews Services a better organization.
When I went for my workout this week, Emily did her 4 week reevaluation on me. What used to take the entire hour, now takes less than 15 minutes. Emily has everything ready to go, so when I get there, we immediately start taking all of my measurements and doing all of the strength tests, then after all of that is completed, we work on as many core strengthening exercises as we can do fot the remaining 45 minutes. All of my evaluation numbers were better than the previous evaluation, with the exception of the dorsiflexion in my feet. Emily was happy with all of the results, and while I would've liked to have seen better numbers with regards to the dorsiflexion in my feet, I guess this will always be a work in progress. Next week, Emily and Vikki will transfer me from my wheelchair, and we will do all of my balance and range of motion exercises. Emily's next HCP article for BioNews Services will be focusing on the exercises we do to help me roll from side to side. This works not only the abductor and adductor muscles in my hips and legs, it's also a great core exercise for my abdominals, shoulders and back muscles. After her HCP article has been published, I will provide a link so you can go out and read it.
Next week's video is going to be extremely important. Cure SMA and Biogen pharmaceuticals will be hosting a webinar on Tuesday, February 4. Biogen will be starting a new clinical trial, where they will test increasing the dosing amounts of Spinraza in older patients with SMA. I will be discussing what this clinical trial will entail, along with giving information about how to keep up with this clinical trial, and also, information on how you can enroll to participate in the webinar on Tuesday, February 4. Even though it may be a couple of years down the road before Biogen increases the dosing amount of Spinraza, I think this is still extremely important information for you, your family and your doctor to discuss.
I've updated the flash briefings that I did for BioNews Services. Click HERE to listen to the flash briefings.
I hope that all of you had a fantastic week. Please do something for yourself this upcoming week, that will make you a better person. God bless you, and I'll see you next week.
Monay, Jan. 6, Through Sunday, Jan. 12 - After thinking that this was going to be a normal week, to my surprise, it was anything but normal. It may have started out normal, but toward the end of the week, information came out regarding a webinar that will be hosted by Biogen Pharmaceuticals, that I think, will answer a lot of questions that those of us that are on Spinraza have had for a very long time. I'll speak more about that in just a moment.
When I went for my workout this week, Emily and Vikki transferred me from my wheelchair to the therapy table. When we started working on my balance exercises, Emily did a couple of minutes of perturbations, where she pushes me forwards, backwards and side to side. It'd been a while since she did these perturbations, and I found them a little bit more challenging this time, probably because we hadn't done these in a while. After a few minutes of these perturbations, Vikki placed a towel under my left hip, which through my balance off quite a bit. The objective of this, was to have me hold my position for as long as I could. This really stressed my abdominal and oblique muscles. We did this particular exercise on my left and right sides of my hips, and then they placed the towel underneath me, directly behind me, and also in front of me. This is more of an isometric exercise, and even though it sounds easy, it was actually quite challenging. After this, Emily and Vikki laid me down on my back, and Emily worked on my range of motion and flexibility exercises. After doing this for a while, and making sure that both hips had been stretched and loosened up, we worked on rolling me from side to side. The objective of this exercise is to not only work my core, but it also works on the abductor and adductor muscles in my hips and legs. They would roll me on my left side, and while applying a bit of tension, I had to roll back onto my back. We did the same thing on my right side, where I had to roll back onto my back, and when we were finished with this exercise, I could feel the muscles in my legs twinge. After allowing me to rest for a few minutes, Emily and Vikki sat me up in a sitting position, while my legs were on the therapy table. Sitting on the therapy table with my legs hanging off and keeping my balance, is not as difficult as it used to be, but sitting up with my legs in front of me, presented a few more challenges. It was more difficult in the sense that now, we could work on flexing my legs out straighter, and this also worked on stretching the muscle in my hips and my thighs. As we go forward with this exercise, we will slowly cross my legs, almost in an Indian style position. We will also work on getting me to lean forward while sitting with my legs stretched out in front of me, which will also work the muscles in my hips. These have been challenging exercises for me, but I really felt a difference in the past month.
In this week's video, I answer more important questions that my subscribers and followers sent me in my email. These questions are regarding Roche/Genentech's new potential treatment known as risdiplam. These questions are primarily for Roche/Genentech, and for our insurance companies. These are questions that will have to be answered before the FDA gives their final decision as to the approval or denial of risdiplam, and these are great questions for all of you to ask your doctors about. Click HERE to view my video.
In 2 weeks, I'm going to be doing a video that I think will peak the interest of every one of my subscribers and followers. The majority of us, if not all of us, are on Spinraza, and while Spinraza has given some of us more benefits than others, it's still a treatment that sparks a lot of interest and questions. About a month ago, I did a video where I told everyone that Biogen was looking into increasing the dosing amounts of Spinraza for those of us that are older. They have a clinical trial called DEVOTE, and I spoke about this clinical trial in my video. We still don't know a lot of information regarding this clinical trial, but on Tuesday, February 4, Biogen Pharmaceuticals and Cure SMA, will be doing a webinar, where they discuss this DEVOTE clinical trial, and they said that they are going to share information regarding increasing the dosing amounts of Spinraza. This will be some great information that all of us will need to see, and I will go over how to register for this webinar, so that you and your families can watch and learn about this new clinical trial. The video that I will be producing on Sunday, January 26, will be a video that you will not want to miss.
I hope that all of you had a fantastic week. Please do something this upcoming week, that will make you a better person. God bless you, and I'll see you in a couple weeks.
Monday, Dec. 30, Through Sunday, Jan. 5 -
HAPPY NEW YEAR!!
After being off from work for nearly 3 weeks, I'm now starting the infamous game of catch up. While the majority of my work was taken care of before I went on vacation, some of it had to be taken care of once I returned. I was expecting a lot more work to catch up on, but to be honest, it was actually pretty good. I work with some great people, and they all covered my back and helped get some of my projects completed while I was gone.
When I went for my workout this week, Emily and I worked on all of my core strengthening exercises while I was sitting in my wheelchair. This was the 2nd week in a row where I went to workout on Thursday, but this was due to the holiday season. Next week, I start my normal routine on Tuesdays, and everything should be back to normal. My overall strength level and energy level have been phenomenal, and I'm looking forward to a great 2020. Emily, and her assistant Vikki, are working hard to come up with some new exercises for me, and all 3 of us feel hopeful and enthusiastic going into the new year. Next week, Emily and Vikki will transfer me out of my wheelchair to the therapy table, and we will do all of my normal balance and range of motion exercises. While some people would consider what I'm doing monotonous, I look at each workout as an opportunity to get stronger, physically, mentally, emotionally and spiritually.
The only major update that I did my website, besides my journal entry, was that I posted the flash briefing that we did for the SMA News Today forum. We did a great story regarding the benefits of risdiplam, and next week, my video will cover quite a few questions that Roche/Genentech still have to answer, along with other questions that our insurance companies and doctors are going to need to address in the not so distant future.
I've updated the flash briefing that I did for BioNews Services, for Friday, January 3. This is an important flash briefing, because it deals with some of the benefits that risdiplam has to offer. Click HERE to listen to the flash briefing.
I hope that all of you had a fantastic and safe New Year's. Do something for yourself this upcoming week that will make you a better person. God bless you and I'll see you next week.
Monday, Feb. 24, Through Sunday, Mar. 01 - As weeks go, I guess I could say that this week was somewhat random and routine. Since getting out of the hospital with my chest infection, I've only been out of the house a couple of times, and I'm feeling almost like a caged rat in my own house. The weather seems to be too cold to go out and do anything, it is much as I despise cold weather, staying in the house seems to be the better option. I guess if it wasn't for my physical therapy, I would probably never leave my house, but hopefully, the weather will be warming up in the not so distant future.
When I went for my workout this week, Emily and Vikki transfered me from my wheelchair to the therapy table. We did about 10 minutes worth of perturbations, where Emily pushed me forwards, backwards and from side to side, and then we immediately went to my range of motion and stretching exercises. During the past week, I must've slept wrong on my right knee, and the ligament intended on the inside part of my right knee has been extremely tender and sore. After stretching my legs and trying to work some of the tightness and soreness out, Emily worked on my arms, while Vikki performed an ice treatment on my knee. She had a round dome of ice that she rubbed on this tended and ligament for about 10 minutes. By the time she, this area of my knee was completely numb. I saw heard touching my knee and even thumping the side of my knee, but never felt a thing. After some of the numbness started to wear off, Emily stretched my knee out just a little bit more, and by Saturday, all of the soreness had virtually disappeared. Next week, Emily and I will work on my core strengthening exercises, and since I'm going to be taking off that Friday, we moved my physical therapy to Tuesday instead of Thursday. I go back into UT Southwestern Medical Center's William P Clement University Hospital on Monday, March 9, so I want to try to relax for a couple of days before going in for my 11th Spinraza injection. This will be my 7th maintenance dose, and given the fact that risdiplam may be approved by the time I'm ready for my injection in July, this might actually be my last Spinraza injection.
I hope that all of you have had a fantastic week, and I hope you do something this week that will make you a better person. God bless you, and I'll see you next week.
Monday, Feb. 17, Through Sunday, Feb. 23 - Now that I'm getting fully recovered from my chest infection, I'm slowly getting back into the swing of things with regards to getting back to my normal schedule. While this was a crazy and hectic week, the only time that I left the house was when I went for my physical therapy on Thursday. As a matter of fact, Thursday was the first day that I left the house since I returned home from the hospital nearly 3 weeks ago.
When I went for my workout this week, Emily performed her 4 week reevaluation on me, and even though I had been out for nearly 3 weeks from physical therapy, my numbers were actually pretty good. Earlier that morning, Emily had sent me an email telling me that the rep from the medical equipment company would be out to meet with us so that she could fit me with my new brace to help straighten my fingers on my right hand. As soon as I arrived, the rep was waiting for me, and it only took her about 10 minutes to show me how to put the brace on and how to use it. This will help straighten my middle finger and my ring finger on my right hand so that they will not tighten up and bend toward the inside part of my hand. After that, Emily took her measurements for the reevaluation, and then we spent the rest of the time stretching my hips and legs while I sat in my wheelchair. Emily focused quite a bit of attention on this, since it had been nearly 3 weeks since I had been stretched. It actually felt good to stretch those hip and leg muscles, and I felt much better after we finished. Next week, Emily and Vikki will transfer me from my wheelchair to the therapy table, and we will do all my balance and range of motion exercises.
In this week's video, I discuss the webinar that was co-hosted by Biogen Pharmaceuticals and Cure SMA. This webinar dealt with the new clinical trial called DEVOTE, and this clinical trial will concentrate on Biogen's attempts to increase the dosing amount of Spinraza. Normally, these webinars are extremely informative, and while this webinar was good with regards to the PowerPoint presentation and the information that was given from the doctors from Biogen, the question and answer part of the webinar failed miserably. Normally, they usually answer anywhere from 10 to 15 questions, but in this webinar, they only answered about 3 or 4 questions, and then they wrapped up and concluded the webinar. Given the fact that they had scheduled this webinar to last one hour, and only used 23 minutes before signing off, left a sour taste in my mouth. None of the questions that I sent in were even addressed, so while the first part of the webinar was very informative, the last part of the webinar left a lot of room for improvement. I also discussed how YouTube has decided to disable the comments section in my videos, and I tell you how you can reach me by either sending me an email, or going to my website. Click HERE to view my video.
I hope that all of you had a great week. Please do something for yourself this upcoming week that's going to make you a better person. God bless you, and I'll see you in a couple weeks.
Monday, Feb. 10, Through Sunday, Feb. 16 - This past week, I spent the majority of the time trying to recover from my chest infection. I was finally able to work 3 full days, and I'm slowly getting back into my routine. Unfortunately, I was still feeling too weak to go to physical therapy, and Emily told me to take my time and concentrate on my recovery. Given the fact that I'm now feeling much better, I will resume my physical therapy on Thursday, February 20.
When I go for physical therapy next week, Emily will perform her 4 week reevaluation on me, and while I do believe that I'm just a little bit weaker than I was before my illness, much of my physical strength has come back, and I'm feeling very good, so hopefully the reevaluation will go well. After that, we will resume our normal schedule, and hopefully things will get back the way they were before I got sick.
VERY IMPORTANT NOTICE: YouTube has decided to disable the comments section on all of my videos that I do. They turned this feature off on all developers that have less than 100,000 subscribers. Many of the people that I follow, have had their comments sections turned off, and some of them have over $70,000 followers. Seeing that I will probably never reach this amount of subscribers, I believe that my comments section will not be reinstated, unless YouTube changes their minds with regards to their decisions. While I strongly disagree with their decision, there's nothing that I can do about it. I did a survey that they sent me, and I was extremely critical of their new decision to do this, but it's like David and Goliath, only this time, Goliath will probably win.
The best way for you to get in contact with me is through my email. If you go to my homepage, you will see a section where you can send me a message, and this will probably be the only way that you will be able to get in contact with me through my website for my YouTube channel. You can also send me a message in my email, which is located in the footer of all of my videos, and in the description of my video that I post each time.
I will no longer be posting the flash briefings that I do for BioNews Services on my website, but they will still be available on SoundCloud if any of you would like to listen to them.
Hopefully, next week, I'll be back to a normal schedule, and I will have my next video posted next Sunday.
I hope that all of you had a fantastic week. Please do something this upcoming week that's going to make you a better person. God bless you, and I'll see you next week.
Monday, Feb. 03, Through Sunday, Feb. 09 - Unfortunately, I will not have a video this week. I was in the hospital on Monday, February 3 with chest congestion and severe dehydration. Doctors gave me IV fluids to help with the dehydration and they ruled out pneumonia in the flu, so they gave me antibiotics to take for my chest congestion. With that being said, I didn’t have enough time to put together a video. My next video will come out on Sunday, February 23, and by that time, I should have some more information regarding Roche/Genentech’s new potential treatment known as risdiplam, and I’ll also be talking about Scholar Rock's new potential treatment called SRK-015, which in my view, will be the next treatment after risdiplam is approved by the FDA. Again, please except my apologies, but I needed to focus on my health, which I’m sure that all of you will fully understand. Thank you.
Monday, Mar. 23, Through Sunday, Mar. 29 - This was an extremely difficult week for me emotionally, and coupled with the Coronavirus information, it's just one of those weeks that I wished had never happened. While I know that I'm not the only one going through these difficult times, just trying to keep focused was extremely difficult.
Over the weekend, I began thinking about everything that I was going to be missing out on, but the scariest thought that I had was that I would not be able to go to physical therapy. Being stuck at home really isn't that big of a deal to me, because I work from home anyway, but the thought of missing physical therapy weighed heavily on my mind. When I contacted Emily via email on Monday morning, I asked her her opinions, and whether or not they were going to be open. She immediately wrote me back and said that they were considered essential medical, and that they would be open. I asked her if she thought it would be wise for me to come in and take my physical therapy, given all of the news regarding the virus. She quickly assured me that they would make sure that I would be the only one taking physical therapy at their facility during that time, and she promised that everything would be okay, but she left the ultimate decision up to me. I trust my life to both Emily and Laura, so I felt comfortable telling her that I would come in as long as she felt comfortable working with me. She said that she would have no problems working with me, so on Thursday, I went for my physical therapy, and I'm extremely glad that I did. Vikki is no longer working for Green Oaks Physical Therapy, so Emily and Laura transferred me from my wheelchair to the therapy table, and Emily did all my balance exercises and range of motion exercises with her PT student, Teresa. Just getting out of the house and being around Emily and Laura made me extremely happy. They were glad to see me, and I was thrilled to see them, because over the past couple of years, we've all built a friendship, and this friendship means the world to me. It's that one day out of the week that I can get out of the house and socialize, and while physical therapy is important to my body, the socialization is probably just as important for my mindset.
Like most companies, BioNews Services is going through difficult times, and unfortunately, we had to release quite a few forum moderators, columnists and editors. Since I'm the Senior Director of Multichannel Content for BioNews Services, I had to reduce my division, just like the other directors with their respective divisions. I ended up reducing the workforce in my division by nearly 56%, but as things get better with regards to the economy, I will probably be able to bring most of these forum moderators back. While it was difficult to have all of these conference calls to let these moderators know about their jobs, every one of them took it with professionalism and grace. While this made me feel better about what was going to happen to them, I still felt sad about having to deliver this kind of information. I taught college for 18 years, and probably failed about 10 or 15 students in this 18 year. I had no problems failing the students because they either quit showing up, or never did any of their work. When I work for ExxonMobil, I had to terminate employees because they never came to work, or their work was sub-par. Terminating or releasing individuals like this are not difficult to do, because they're the ones that set their own destiny. The forum moderators that I had to release on Monday were all outstanding individuals who did nothing wrong, other than being caught in a financial situation that's affecting countless companies around the world. The saving grace is that I will be able to bring most of these individuals back as the economy improves, but it was still a very difficult week.
Next week's video is going to cover a potpourri of topics that revolve around the Coronavirus and things that we can do as patients with SMA to keep ourselves safe. I'm also going to be discussing some information regarding Roche/Genentech's potential treatment known as risdiplam, and I'll be giving you my opinions with regards to some other information that I think is important for you to know.
I hope that all of you had a wonderful week, and I ask that you not only do something this week to make yourself a better person, my hopes and prayers are that you, your families and loved ones remain safe and healthy during these uncertain times. God bless you, and I'll see you next week.
Monday, Mar. 16, Through Sunday, Mar. 22 - Coronavirus, Coronavirus, Coronavirus - It seems that this is the only thing that anybody is talking about. Idiots going to the store and purchasing 500 packages of toilet paper, and more water than they would ever need in a lifetime. I am in no way trivializing or minimizing the issues surrounding this virus, but good God people, you're not going to be stuck in your house for 6 months. If people use a little bit of common sense instead of trying to be doomsday activists, all of us would be better off.
When I went for my workout this week, Emily was back from her vacation, and we went through my 4 week reevaluation process. After that, we spent the majority of the time stretching the muscles in my hips and legs, and then Emily hooked me up to a machine that compressed my left foot while pumping in ice water to relieve some of the swelling. While the topic of the Coronavirus did come up, it was mainly to talk about all of the idiots out there that were doing stupid things, instead of using common sense. While the physical therapy clinic that I go to is not going to shut down, they have reduced the amount of hours that they are working each day, and they are taking precautions and doing extra cleaning and sanitizing after each patient finishes their session. Next week, Emily and Vikki will transfer me from my wheelchair to the therapy table, and I'm hoping that we can resume more normal activities.
In this week's video, I'm answering 2 questions that were sent to me regarding Roche/Genentech's potential treatment called risdiplam. Currently, risdiplam is under FDA review, and should be passed in either April or May, to become the 3rd FDA approved treatment for those of us with SMA. The questions that I'm going to be answering in my video are ones that I feel that you should speak to your family and doctors about, because since we may only have another month or two before this treatment becomes a reality, these questions will help you possibly decide on whether or not risdiplam will be right for you. Click HERE to view my video.
I hope that all of you, including your family and friends, have had a wonderful week. Please be safe over the next month, and while I'm not telling you to hibernate in your house the entire time, please do exercise caution when you know that you're going to be around other people. Also, do something for yourself this upcoming week, that will make you a better person. God bless you, and I'll see you in a couple weeks.
Monday, Mar. 09, Through Sunday, Mar. 15 - I was really hoping for a relaxing week, where everything fell into place. After going to the hospital to receive my 11th Spinraza injection on Monday, March 9, my entire week became filled with Coronavirus topics and all of the nervousness that surrounds this virus.
Monday morning, I left my house around 10:15 AM CST, and headed toward UT Southwestern Medical Center's William P Clements University Hospital. I was scheduled to receive my injection at 1 PM CST, but as always, they want me there no later than 11:30 AM CST so that they can do all of the bloodwork and urinalysis tests. After getting there, and after they transferred me from my wheelchair to my bed, the bloodwork and urinalysis took place. After they sent these to the lab, they started doing all of the prep work for the procedure, and while asking me all of the usual questions and getting all my vitals, the technician came in and said that they were ready for me. Even though I wasn't scheduled for the procedure until 1 PM CST, they took me into the fluoroscopy suite around 12:40 PM CST. After getting in the fluoroscopy suite, Dr. Scott came into the room and after we spoke for about 2 or 3 minutes, they transferred me from my bed to the fluoroscopy table and got me in position. From the time that they numbed my back with the lidocaine, to the time that it took Dr. Scott and his student doctor to perform the procedure, I was back in my bed in less than 10 minutes. Everything went as expected, and there were no complications. When they took me back to my room, my caregiver was there with a large cup of coffee, and while I laid on my back for one hour, I drank the coffee and tried to relax. After they release me from the hospital, I went home and did some work, and then went to bed around 6:30 PM CST.
When I went for my workout this week, Emily was on vacation, so I got to work out with my first physical therapist, Laura. Laura had to quit working with me when she was pregnant with her first child, so it had been a while since I had a chance to spend some time with Laura during my physical therapy. While she's always there when I work out with Emily, this was the first time in about 6 months that I actually got to spend the entire time with Laura. She and Vikki transferred me from my wheelchair to the therapy table, and after we did my balance exercises, they laid me down on my back, and Laura began doing all of my stretching and range of motion exercises. She noticed that I had just a bit more swelling in my left ankle that I normally do, so Laura put an ice machine on both of my feet and ankles, and they ran ice water through this machine which also compressed my ankles and feet at the same time. While it was extremely cold, it actually felt good, and I think we will do this on a regular basis. Next week, Emily will be back, and I will resume my workouts with her.
As most of you are well aware of, the coronavirus has been a topic that's been on everyone's mind, and a hot topic that's been on the news. As soon as Pres. Trump banned all flights from Europe, everyone went to the store and started hoarding as much bottled water and toilet paper as they could. When my caregivers went to the store this week, they said it looked like something out of a horror movie. All of the shelves were bare, and people were actually getting into arguments and fighting over food that was left on the shelves. While I fully understand the implications and ramifications of the coronavirus, I just don't understand all of the panic that seems to be happening. Researchers and doctors are telling us that 80% of the people that catch this virus will probably not even know that they have it. They may feel somewhat sluggish, and they may run a low-grade temperature, but for the average able-bodied healthy person, it's not going to be as noticeable as what they fear. The elderly, and those of us with upper respiratory and lower lung functions will be the ones who are in the most danger. Over the next couple weeks, I will probably isolate myself to the house, and avoid getting out. At this time, my physical therapists are telling me that they will continue to see me on my normal Thursday sessions, but given the fact that everyone is panicking, and making it sound like that this is the end of the world, the physical therapy clinic may not be open next week when I go in. Only time will tell, but I'm hoping that things will return to normal in the next couple weeks.
In next week's video, I'll be answering a few questions that I think are relative to Roche/Genentech's treatment called risdiplam. While these were questions that I received in my email from my subscribers and followers to my YouTube channel, I think of this as more common sense regarding this potential treatment, and I think you'll understand what I mean when you watch my video next week.
I hope that all of you had a fantastic week, and I hope this upcoming week, you do something for yourself that will make you a better person. God bless you, and I'll see you next week.
Monday, Mar. 02, Through Sunday, Mar. 08 - Tension, anger, anxiety, weakness and frustration are all adjectives that I could've used this week. While I was hoping that this would be a good week, it just seems like nothing worked out for me during Monday through Friday. The only bright spot to my week was my physical therapy. Luckily, when the weekend started, everything seemed to turn around, and started getting back to a more normal routine.
In a video that I did quite some time ago, I said that I wasn't experiencing any lethargic feelings as I approached my upcoming Spinraza injection, but I have to say, the past 2 weeks have been frustrating. My right arm is extremely weak, and my energy level has been almost nonexistent. I guess my body really is craving its next Spinraza injection, which comes this coming Monday, March 9. I'm checking myself back into UT Southwestern Medical Center's William P Clements University Hospital for my 11th Spinraza injection, which will actually be my 7th maintenance dose. I didn't experience these lethargic feelings between my 5th and 6th maintenance doses, but this time, these lethargic feelings have really kicked my ass. Fingers crossed that my energy level and strength comes back after my next injection.
When I went for my workout this week, Emily and I worked on my core strengthening exercises. Since it had been a while since I've been stretched, Emily focused a lot of attention on working on my hip muscles while I was sitting in my wheelchair. She also did an ice treatment on my right knee, to relax the tendons. She iced my knee down so much, my knee was numb for about 10 minutes. We did this last week and this week, and my right knee is now back to normal. Next week, Emily will be on vacation, so I'll be working with Laura and Vikki, and they will transfer me from my wheelchair to the therapy table. This will be the first time that I've had a chance to work with Laura in quite some time, and I'm looking forward to spending some time with her. She was my first physical therapist, and while she makes me work hard, I value both her knowledge and her friendship.
In this week's video, I'm discussing another biopharmaceutical company by the name of Scholar Rock, and their potential treatment known as SRK-015. I discuss how this treatment will impact our bodies, and how it differs from Spinraza, Zolgensma and risdiplam. Click HERE to view my video.
As I said in the opening, I go back to the hospital on Monday for my next Spinraza injection. I'm sure that everything will go well, and I'm just wondering if this may be my last Spinraza injection. After the injection that I'm going to receive on Monday, my next injection will be in July. By that time, Roche/Genentech's new potential treatment known as risdiplam might be approved by the FDA, and once it gets approved, my neurologist and I are going to start filling out the paperwork necessary to get me started on this oral treatment. While I know that Spinraza has done wonders for my body, I'm at the age to where I'm willing to switch treatments to see if there's any changes with regards to my physical condition. Risdiplam has received outstanding reviews, and I'm hopeful to be on this new treatment before July of this year.
I hope that all of you have had a fantastic week. Please do something for yourself this upcoming week, that will make you a better person. God bless you, and I'll see you in a couple weeks.
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In this week’s video, I discuss the REALITY of what Spinraza and Evrysdi ACTUALLY do for those of us with SMA.
I discuss my thoughts regarding these treatments, and I also discussed how hopeful we should all be with regards to Scholar Rock’s new treatment known as apitegromab.
This potential treatment will be the first of its kind because it will be a muscle targeted therapy, that will be used in combination with Spinraza, and other possible treatments.
Be sure to read Emily's latest article: