Monday. Oct. 26, Through Sundat, Nov. 01 - If I haven't ever told you, I despise cold weather. As a kid, I would go outside when it was 30°, and it would never affect me. Now, if I go outside when it's 50°, my hands get so cold, it makes it difficult for me to control my electric wheelchair. Yes, I know I'm getting older, and yes, I realize that things change as you age, but give me a break. It got so cold, I had to move my physical therapy from Tuesday to Thursday this past week. While I may save some money on my electric bill, I can't wait until it gets to be 95° and hot.
When I went for my workout this week, we worked on my core strengthening and resistance band exercises. I felt so sorry for my physical therapist, because she's at the point in her pregnancy, where she's not getting any sleep at night, and it seems that all of her energy has been drained. I know that she's ready to have her son, and take some time off to possibly get some rest, but it's still difficult to see her going through everything that she's going through. The weather was so cold in Dallas this past week, I change my physical therapy from Tuesday to Thursday. While I try not to make it a habit of changing my schedule based on the temperature, I did this week. Luckily, Emily was able to see me on Thursday, but it was still extremely cold outside for me. When I go back for my workout on Tuesday, we'll work on my balance and my range of motion exercises on the therapy table, along with doing more hip flexors.
I've now been on Evrysdi for the past 10 days, and while some people experience some nausea or fever, I haven't experienced any side effects. While I don't necessarily feel any different as of yet, I'm going to give this treatment a couple of months to see if I start noticing any changes or any differences regarding my energy level and my breathing. I got the results back for my pulmonologist this past week regarding my pulmonary function test [PFT], and he said that my lung function went from 38% lung capacity to nearly 58% lung capacity. My pulmonologist's PA called and spoke with me, and he said that everyone in the office was extremely impressed with the progress. He said that while Spinraza may have been the cause for some of the improvements, he said that my physical therapy and my core strengthening exercises had probably done the most to benefit me regarding my lung capacity.
While I was going to do a video regarding my new Evrysdi treatment, I think I'm going to hold off for a couple of weeks before creating this video, because I would like to have some more time to see if I experience any changes. Next week, my video will be covering the recent six-month release of data from Scholar Rock. They released this data which demonstrated some great benefits for those who are on the TOPAZ trial. SRK-015 is the first muscle targeted therapy for those of us with SMA, and the recent release of this information, is providing a lot of excitement within the SMA community. My video will cover some of the highlights regarding this release of data, and I'll also be sharing my opinions regarding what some of this data may mean for those of us with spinal muscular atrophy.
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.
Monday, Oct. 12, Through Sunday. Oct. 25 - No matter how hard I try to update my website and my journal entry on a weekly basis, every once in a while, things happen that keep me from doing what I would like to do. I guess I'm like everybody else when it comes to the amount of time and the number of days of the week. Over the past 2 weeks, there's been a lot of exciting things that have happened, so make sure you read my entire journal entry.
My physical therapy has been going very well over the past 2 weeks. Week before last, Emily performed my 4 week reevaluation, and last week, we worked on my balance and range of motion exercises. While we still spend about 10 or 15 minutes on my balance exercises, the majority of the time that I'm on the therapy table is spent doing my hip flexing exercises, which you can see in the picture on the left-hand side of this journal entry. These exercises are meant to stretch not only the muscles in the hip, they also work on my quadriceps and hamstrings as well. While it looks very uncomfortable to do, it's actually something that I enjoyed quite a bit. When we first get started, these muscles are extremely tight, but as we go through all of the stretching and flexing, these muscles relax, which allows my physical therapists to continue to extend the distance in which I can flex my hips. Someone asked me last week if these exercises hurt, and I told them that while they seem to look like they're uncomfortable to do, the amount of relief that I get is well worth any discomfort.
In this week's video, I discussed the steps that I took to get approval to start my Evrysdi treatments. Many of us experienced delays when starting our Spinraza treatments, and my video quickly dispels any rumors or thoughts that the same experience would happen if we decided to switch to Evrysdi. The approval process only took about a week, but it did take a little bit longer than expected to get the deductible assistance program set up. After going back and forth with Genentech and my insurance company, everything got worked out, and I officially started my Evrysdi treatments on Thursday, October 22, 2020. I called my neurologist at UT Southwestern Medical Center, and told her that I received my first prescription of Evrysdi, and she contacted the Interventional Radiology Department at UT Southwestern and canceled my upcoming Spinraza injections, and she even called Biogen and told them that I was switching to Evrysdi. I contacted my Family Access Manager and told her, and she wrote me back and told me that if I ever wanted to come back to Spinraza, all I needed to do was to contact her and she would make sure that I could get back on this program without any delays. Both Biogen and Genentech have been extremely gracious, along with being extremely helpful in working through these treatments with me, and while I'm very thankful that Biogen put me on their free drug program and had me on Spinraza for the past 3 years, I'm also grateful that Genentech created an oral version of the treatment that those of us with SMA can take at home. Many of you that have SMA may decide to stay with Spinraza, and I support you in any decision that you make. Remember, this is a choice that I made, and I in no way what my decision to influence your decision. Your decision needs to be between you, your family and doctors, but I will always be there to answer your questions and help you in any way that I can. Click HERE to view my video.
I'm hoping that all of you had a fantastic week, and again, please except my apologies for not updating my website over the past couple weeks. 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, Oct. 5, Through Sunday, Oct. 11 - While the majority of my week was spent on conference calls at work, it was actually an extremely productive week for me. My job with BioNews is going great, and I received some excellent news from Genentech regarding my application for Evrysdi.
When I went for my workout this week, Alex and Restin, her PT student, transferred me from my wheelchair to the therapy table. We worked for about 10 minutes on my balance, and then we immediately started doing stretching and range of motion in my hips. I'm hoping to be getting my new wheelchair in the next month or two, so both Emily and Alex are working to make sure that I'm going to be comfortable in my new chair. Alex and Restin worked on my hip flexor exercises while I was laying on my side, and Emily was there to make sure that I was okay and that I was comfortable during this exercise. Later that evening, I wrote Emily and told her that my quadriceps were screaming at me, and she wrote me back and told me that they probably were, considering how much they were flexing me during my workout session. Luckily, my quads relaxed when I went to bed, and I had no residual soreness from the stretches. My hips and my legs have felt amazing this past week, and while we may not be getting too much improvement on my range of motion in my hip flexors, these exercises have definitely helped the way that I feel throughout the week.
I added some pictures to my photo gallery of some exercises that Emily is working with me on. About a year ago, I lost my balance while rolling on uneven pavement, and nearly fell out of my wheelchair. Emily's been working with me on rolling on uneven and unlevel surfaces, to help me with my balance control and my core strengthening. These pictures that we took last week are examples of some of the new things that we are doing. Since the weather is going to be getting colder here in Texas, when spring comes around, we will venture out into the shopping center that surrounds Emily's PT clinic, and we will focus on getting me on some unlevel surfaces so that I can work to improve my balance. Please click HERE to see the pictures. Next week, Emily will perform my 4 week reevaluation, and we will also do some stretching while I'm sitting in my wheelchair.
I received a phone call on Wednesday this past week, telling me that my application for Evrysdi had been approved, and they were ready to ship my treatment to me. Before I agreed to do this, I wanted some answers to some questions that I had regarding my insurance coverage and what I was going to be responsible for with regards to my deductible. The young lady that I spoke to couldn't answer my questions, so she said she would refer back to her insurance group, and I also started speaking with my liaison. After getting my questions answered, we agreed that my first shipment of Evrysdi will arrive at my house on Wednesday, October 15. As soon as I receive my Evrysdi, I'll call my Family Access Manager with Biogen, and inform them that I have officially switched from Spinraza to Evrysdi.
Next week, I will do a video detailing what I had to go through to get approval for Evrysdi, and some of the questions that I had. I think the information that I will be giving my subscribers and my followers will be good information that they can use if they plan on going through the same process that I did.
I hope 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 next week.
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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: