Monday, Sept. 28, Through Sunday, Oct. 4 - Well, this past week was definitely better than the last time I entered my journal entry. While I've quit hemorrhaging money, I sometimes feel as if I'm hemorrhaging the amount of hours in the day. As soon as I feel like I'm caught up, something happens to remind me that I still have a long way to go before I actually do get caught up. I truly believe this is a vicious cycle that affects almost everyone, so I guess I really have no reason to complain.
When I went for my workout this week, Emily had switched schedules with Alex, so I got to work out with Alex this week. Being that she's the new director of the physical therapy clinic that I go to, it was nice to get to sit and talk with her, because when Emily goes on maternity leave in November, I'll be working with Alex and her PT student Restin. We did all of my core strengthening exercises, and Alex also stretched my hips and legs while I sat in my wheelchair. Next week, she and Restin will transfer me from my wheelchair to the therapy table, and we'll do all of my balance, range of motion and flexibility exercises.
On Thursday, October 1, I got to speak to the DPT graduating students from the University of St. Augustine in Austin Texas. This was my 2nd lecture at this college, and I had the opportunity to speak with these upcoming graduates about working with patients with SMA during physical therapy, and the benefits that we've seen as patients since beginning physical therapy. Having taught college myself for 18 years, it made me realize how much I missed the classroom setting, and getting to do this on a regular basis, makes me appreciate not only what I've gone through myself, but I also have a deeper appreciation for physical therapists and what they have to go through on a day-to-day basis.
In this week's video, I discuss how opinions of pharmaceutical companies have changed over the past 5 or 6 years. Pharmaceutical companies were once considered evil monsters, because many of us felt as if their only concern was making money. After watching my video, I'm hoping that you'll have a change of mind, and a better understanding as to how pharmaceutical companies create, market and distribute their drugs and treatments. Click HERE to view my 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.
Monday, Sept. 21, Through Sunday, Sept. 27 - Have you ever had one of those weeks where you feel like you're hemorrhaging money. During this past week, I had to have a plumber come out and replace my sink and faucet in my kitchen, repair and outside water faucet on my back patio, and I also had to have a new hot water heater installed and one of the supply lines repaired behind my garage wall. All of this happened in the course of 2 days, and before I knew it, over $4000 had been sucked out of my savings. Even with all of this happening though, my week went very well.
When I went for my workout this week, Alex and her PT student, Restin, transferred me from my wheelchair to the therapy table, and we focused primarily on my balance exercises and my hip flexor exercises. I wanted to focus more attention on my hip flexor's this past week, because I would really like to be as stretched out and flexible as possible before I get my new wheelchair. Both Emily and Alex have agreed that we will work on these exercises each time that they transfer me to the therapy table, and I can tell you that after last Tuesday, my quadriceps have never felt better. After my PT on Tuesday, I wrote Emily and Alex and told them that my quadriceps were screaming at me, and Emily wrote me back and said that this was the first time that they had been stretched amount as much as they did, but surprisingly, I didn't have any residual tightness or soreness from doing these hip flexor exercises. This upcoming week, Emily and Alex are switching their schedules on Tuesday and Wednesday, so I'll be working with Alex during my core strengthening exercises.
I received a phone call from the prescription company that's handling my Evrysdi, and they informed me of what my deductible would be for this treatment. They said that Genentech had a a deductible assistance program that they would offer me if I wanted, and given the fact that the deductible would be nearly $3000, I asked them if they would attempt to get me in this program. I was hoping to hear something this past week, but they told me that it could be the middle part of this upcoming week before they would have an answer for me.
All my paperwork for my new wheelchair has been signed off from my doctor, along with the new prescription from the doctor, and all of this paperwork has been sent to my insurance company for a decision regarding the funding of my new wheelchair. This decision should be made sometime this upcoming week, and if my insurance approves this wheelchair, we will then send the amount that I'll be responsible for to the Texas Workforce Commission, [TWC], and we're hoping that they will pay for the deductible. If this happens, the wheelchair company will place the order for my new chair, which they told me could take up to 6 weeks to be delivered. I'm hoping to get an answer to all these questions before the presidential elections in November, and hopefully, be able to take delivery of my new chair before the end of this year.
I hope all of you have had a fantastic week, and I asked you something for yourself this upcoming week that will make you a better person. God bless you, and I'm hoping to see you next week.
Monday, Sept. 14, Through Sunday, Sept. 20 - This has been one of those weeks that I wish I could relive over and over again. I felt like I was stuck in the movie Groundhog Day, but everything that happened was good, unlike the movie. It's nice to have one of those weeks where everything falls into place like it should, along with a few added surprises.
When I went for my workout this week, Alex was out doing some marketing calls to attract new business, and I had a chance to work with Emily one on one. I don't usually get to work with Emily very much, now that she's pregnant, so since we were only going to do the measurements for my 4 week reevaluation, Emily could do this without putting any stress on her body. As she was doing my measurements, she and I had a chance to just sit and talk, which was actually very nice. All of my measurements for my reevaluation were about the same, and after taking these measurements, Emily worked on stretching my legs and my hips while I sat in my wheelchair. This upcoming week, Alex and her PT student will transfer me from my wheelchair to the therapy table, and we'll do all of my normal balance and range of motion and flexibility exercises. We probably won't do the adema reduction massage on my feet in my ankles, because we are going to focus on my new hip flexor exercises that we've been doing lately. An example of this can be seen in the picture just to the left of my journal entry.
In this week's video, I discussed the possibilities of a future combination therapy for those of us with SMA. There's been a lot of conversation within the SMA community regarding a possible combination therapy, and while we have 3 treatments for SMA at the current time, the likelihood of 2 of these therapies being combined is not very good. With that being said, Scholar Rock's new potential therapy that's underdevelopment, called SRK-015, may be our best hope of a combination therapy that will target both muscle and cellular aspects of our disease. Click HERE to view my video. [Toward the end of this video, there's a portion that speaks about the possibility of stem cell transplants, and while the article that I'm reviewing doesn't go into great detail about this, I will be speaking about stem cell transplantation in one of my future videos, and how this medical breakthrough could be another major milestone for those of us with SMA.]
In the introduction paragraph, I mentioned something about a surprise that I received during the week. As most of you know, I'm in the process of switching from Spinraza to Evrysdi, and my doctor and I have filled out all of her paperwork and sent it to Genentech for them to review, and to start the process of filing the necessary paperwork with my insurance company. Since I hadn't heard anything from my Personalized Access Liaison [PAL], I decided to call Genentech and ask them if they knew any kind of a status with regards to my request. They told me that they had already received all of the paperwork, and they also submitted this paperwork to start the insurance approval process. They then told me that the initial request had been turned down by my insurance company, because since this treatment was so new, they didn't know whether to put this under my major medical portion, or if it needed to be filed under my prescription drug program. My case manager at Genentech told me that they had requested that my doctor write a formulary exception, which would then allow Genentech to file this request under my prescription drug program. My case manager told me that they had already reached out to my doctors about writing this formulary exception, but they didn't have any other information. I then sent an email to my neurologist at UT Southwestern Medical Center, in Dallas Texas, asking for a status. Within 3 hours, I received an email back for my neurologist's physician assistant, telling me that my neurologist had written the prescription for the formulary exception. She said that they had just been notified earlier that morning that Genentech had finally approved my request to begin Evrysdi, and that they would be contacting me sometime this week. She told me that since this was such a new treatment, they would only be writing the prescription for the rest of this year, and that I would probably be receiving a 200 mL bottle of Evrysdi, which is about a 30 day supply. I'll be taking 5 mL each day, so over the course of a 30 day month, this would be about 150 mL. At the end of each month, they would be sending me another bottle of Evrysdi, along with the syringes that are used to draw the liquid out of the bottle to inject in my mouth. At least I know now that my request has been accepted, and that hopefully around the October 6th timeframe, I will officially be on Evrysdi.
I hope that all of you had a fantastic week, and I ask that you do something this week for yourself that will make you a better person. God bless you, and I'll see you in a couple of weeks.
Monday, Sept. 7, Through Sunday, Sept 13 - Wow, what a busy week this has been. The company I work for, BioNews Services, is trying to get everything wrapped up for 2020, all while trying to set goals and expectations for 2021. My days are consumed with conference calls, strategic meetings and other projects, and while it's taking the majority of my time to accomplish everything, I wouldn't have it any other way.
When I went for my workout this week, they transferred to me from my wheelchair to the therapy table, and we worked on a new stretching exercise for my hip flexors. It's similar to the same type of stretch that I do while on my back, but now, they rolled me on my side, and stretch my legs out as straight as they can. I never really knew how tight my hip flexors were until we started doing this particular exercise. If you look at the picture in my journal entry, you'll see what I mean. Our goal is to try to get these hip flexors as loose as possible, which will also provide me some better comfort while sitting in my wheelchair. We've been working on this exercise for about a month now, and I can already tell a difference in the way I feel. Click HERE to view the new photos that I uploaded.
Next week's video is going to cover a topic that I'm extremely excited about. All of us with SMA have been hoping and praying for a combination therapy, and my video is going to be discussing some great news regarding this particular topic. While it may be about another year away from being approved by the FDA, the hope of this type of combination therapy will definitely change the course of our lives. Make sure that you watch next week's video, because I think you're going to love what I have to say.
I hope that all of you had a fantastic week, and I ask that you do something this week for yourself that will make you a better person. God bless you, and I'll see you next week.
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