Monday, August 24, Through Sunday, Sept. 6 - While I said that I would try to upload my journal entry each week, you can probably tell that my plans don't always work out. My work schedule a BioNews has been keeping me extremely busy, along with everything that I've been with regards to my physical therapy. It's just been a very hectic month for me, so please forgive me.
When I went for my workouts the past 2 weeks, everything was pretty routine. We did all of our normal balance and range of motion exercises on Tuesday, August 11, and we did all of my core strengthening exercises on Tuesday, August 18. No big surprises, and everything is going well.
In this week's video, I discuss some frequently asked questions [FAQs] regarding Evrysdi. These are some of the questions that are circulating around the SMA community, and I focus this video on some of the most important questions that have been asked so far. This treatment is growing in popularity, and there will be other questions that I will address in future videos as they come up. Click HERE to view my video.
On Friday, August 7, as soon as the FDA made their announcement, I contacted Genentech and filled out the patient's start form, to start the process of trying to get approval to take Evrysdi. My neurologist at UT Southwestern Medical Center, in Dallas Texas, filled out her portion of the paperwork, and on Wednesday, September 2, I received a phone call from Genentech telling me that all of my paperwork had been filled out and sent for approval. They told me that I should be receiving some information by Wednesday, September 9. Following back call, I received another phone call from my Partnership Access Liaison, [PAL] telling me that she would be the one that would be following me through my sign-up process and through all of the paperwork that would need to be filled out. Since everything was done online, I never had to go into my neurologist's office. This process was much easier than I first anticipated, and both me and my neurologist are excited at the fact that I could be starting Evrysdi by Tuesday, October 6.
I hope all of you had a fantastic week, and I hope you 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, August 10, Through Sunday, August 23 - I apologize for not updating my journal entry last week. It was just one of those weeks where I didn't have enough hours in the day to get everything done. We're starting a new promotional campaign for SMA News Today, and my days were filled with back-and-forth emails with vendors, along with everything else that I had to do.
When I went for my workout over the past 2 weeks, we worked on everything from balance and range of motion, flexibility and core strengthening. For the past couple of weeks, my physical therapists, Emily and Alex, have been performing adema reduction massage on my feet, ankles and calves. [You can see a picture of this on the left-hand side of my journal entry.] As I mentioned a few weeks ago, my diet has not been the best, so I've been cutting back on the amount of sodium and restaurant foods, and I've also been taking my hydrochlorothiazide pill every day. This has definitely helped, but I still have a long way to go. Next week, when I go in for my workout, Emily and Alex will again transfer me to the therapy table and do this edema reduction massage therapy again, and they will continue to do this every other week as long as it's needed. Hopefully, when I get my new wheelchair in the next couple of months, this will help eliminate much of the swelling, because I'll be using the foot rests, which will help to elevate the underside of my knees. By not having all this pressure on the underside of my knees, this should help eliminate much of the swelling.
In this week's video, I discuss the differences between Spinraza and Evrysdi [risdiplam]. Since the FDA approved Evrysdi on Friday, August 7, I wanted to explain the differences between these 2 treatments. While they both work about the same with regards to the SMN2 gene, they go about it in different ways, and the differences are quite significant. By knowing the differences between these 2 treatments, you can speak to your doctors about which treatment would be best for you. Click HERE to view my video.
I hope that all of you had a great week, and I hope that you 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, August 3, Through Sunday, August 9 - This was one of those weeks that I'll probably remember for a long time. The past couple of weeks, I went through some ups and downs with regards to my health and some personal issues, but this week, everything fell into place like clockwork, and the best news that I received, was on Friday, August 7, at approximately 1 PM CST, the FDA approved risdiplam.
When the FDA approved risdiplam, which is now known as Evrysdi, my usual calm and relaxed Friday, was turned upside down with excitement and a lot of work. The company that I work for, BioNews Services, started posting a few articles that related to the FDA approval, and the department that I'm responsible for, Mult-Cchannel Content, make sure that our forum topics were updated, and we as a company, were ready. If you would like to read the latest information regarding these articles about the FDA approval, click HERE
When I went for my workout on Tuesday, I finally got to work with Emily. Due to her pregnancy, she's limited with regards to what she can do with me, but since we were working on core strengthening exercises, and since we were not transferring me, Emily and I had some time to catch up. All of my exercises went well, and next week, my new PT, Alex, will transfer me to the therapy table, along with a few of their new PT students, and we will do all my balance, range of motion and flexibility exercises. They will also do the same procedure on me that they did 2 weeks ago, where they push the swelling for my feet and ankles toward my upper extremities. This has been extremely helpful with regards to the amount swelling that's happening in my feet and ankles, and since I've been monitoring my sodium intake, I can definitely tell a difference.
In this week's video, I discussed the recent FDA approval of risdiplam. We knew that they would change the name, and after the approval, we found out that the new name would be Evrysdi. (Don't ask me how they came up with this name.) I talk about how this treatment is going to work, and I go over how they made this decision, along with discussing the label that the FDA approved regarding the use and administration of this treatment. In the description of my video, I provide the links to the 2 articles that BioNews Services wrote regarding the approval of Evrysdi. Click HERE to view the video.
I hope that all of you had a fantastic week, and I ask that you 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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