Monthly Journal - January (2020)

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 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.

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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.

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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.

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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'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 this upcoming week, that will make you a better person. God bless you, and I'll see you in a couple weeks.

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Monday, 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.