Monthly Journal - February (2020)

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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.

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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.

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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.

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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.