Monthly Journal - April (2020)

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Monday, Apr. 27, Through Sunday, May 3 - My energy level was great, and the week went much faster than I thought it would. When I started my work week out on Monday, I was expecting a slow week, but with all of the projects that I had on my plate, it seemed that the week went by quickly.


This week, when I went for my workout, Emily performed my 4 week reevaluation. After taking all of the measurements that she needed to to complete this reevaluation, we mainly focused on stretching my legs and my hip muscles. The week before that, her to physical therapy students didn't stretch me out like I needed, so Emily focused much of her attention on this to make sure that I would be comfortable the rest of this week. While working out with Emily, Laura told me that she was going to borrow me for 2 or 3 weeks, because she was going to get 2 new physical therapy students, and she wanted them to work with me. I looked at Emily, and then looked at Laura and told her that Emily would probably be glad to get rid of me for a couple weeks. When I go back in next week, Laura and Emily will transfer me from my wheelchair to the physical therapy table. I enjoy these sessions, because I get to work on my balance and my range of motion. They are also going to have me do something called long sitting, which is where I will sit on the table with my legs stretched out in front of me. This is very difficult for me to do because my left hip is higher than my right hip, so it forces me to really work on my balance.


I hope that all of you have 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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Monday, Apr. 20, Through Sunday, Apr. 26 - Overall, last week treated me pretty well. My energy levels and even my physical strength seemed to be very good. This whole pandemic has made all of us stop and think about what's important, and even though I had a good sense of where I was headed, I think it's forced the majority of us with SMA to really focus on the future, and what's ahead of us.


This week, when I went for my workout, Emily and Laura transferred me from my wheelchair to the therapy table and we did all my balance exercises and range of motion exercises. While Laura helped to transfer me, Emily's PT students were the ones who worked with me during my workout. I really enjoy working out with Laura and Emily, but getting to work with the PT students, gives me an opportunity to share my knowledge and make them more comfortable working with someone who has SMA. Jesse, one of the PT students, told me that when she went to class last week, they began talking about SMA, and her instructor was excited that she got to work with me and asked her about what the other students could expect. I told Jesse to tell her instructor that I would be more than happy to either do a video or audio conference call with her class if she would like me to do so. Next week, Laura and Emily will have new PT students, and the students will be there for 12 weeks. Our goal is to work with the students, and have them learn as much is possible about how to work out with someone who has SMA.


In this week’s video, I discussed the differences between Roche/Genentech’s potential treatment known as risdiplam, and Scholar Rock’s potential treatment known as SRK-015. We expect a decision by the FDA regarding risdiplam no later than August 24 of this year. While they were supposed to make this announcement no later than May 24 of this year, the FDA recently requested further data from Roche/Genentech, so that they could broaden the label to include a wider population of older patients, and this additional data required the FDA to delay this announcement for up to 3 months. My video talks about the differences between risdiplam and SRK-015, and highlights some key differences between these treatments  NOTE:  I’ve included numerous articles that were written by SMA News Today, regarding risdiplam and SRK-015. Please be sure to read these articles and discuss them with your family and friends, along with your doctor. 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'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, Apr. 13, Through Sunday, Apr. 19 - If you ever saw anybody with a surgical mask on, you assumed that it was a doctor or nurse. Now, due to the COVID-19 pandemic, everyone is assuming the role of a doctor or a nurse. With everyone wearing surgical masks, it gives a slight uneasy feeling with regards to being out of your own home. I guess this is going to be the new normal for the next couple weeks, and I'll be glad when we can shed these surgical masks and start being ourselves. This week, I felt like I had a ton of energy and the physical strength in my right arm is coming back to about where it was before I started losing some of my strength. I guess this just reaffirms my belief that Spinraza is helping, along with my physical therapy.


This week, when I went for my workout, Emily's PT student, Jesse, helped me with my core strengthening exercises. We went through the myriad of exercises that I go through when working on my core, and she did an excellent job. Both Emily and Laura had Jesse review and study what SMA was, and after speaking with Jesse, I was extremely happy with the amount of knowledge that she had gained. That's one of the reasons why I like working with Emily and Laura's PT students. They give me the freedom to not only tell the students more about SMA, they give the students the ability to work with me so that they can be better physical therapists. Next week, Emily and Jesse will transfer me from my wheelchair to the therapy table, and we will do all of my balance and range of motion exercises.


In next week's video, I'm going to review the differences between Roche/Genentech's potential treatment known as risdiplam, with Scholar Rock's potential treatment known as SRK-015. While I've spoken about these 2 potential therapies in previous videos, I wanted to review the differences between these treatments, and what each one offers those of us who suffer from SMA. As excited as I am about the upcoming announcement regarding risdiplam, I do believe that SRK-015 will be a game changer for those of us with SMA, because it addresses the key reason why our muscles are not able to get stronger. I'm also going to be looking in to the possibilities of this being a combination therapy between either Spinraza, Zolgensma and/or risdiplam. There's not a lot of talk about this going on within the SMA community, but I do believe that there will be a possibility of a combination therapy, and as soon as I find out more information, I'll be sure to let everyone know.


I hope that all of you have had a wonderful week. Do something for yourself this upcoming week, that will make you a better person. Please say a prayer for all of our first-line defenders, such as our doctors, nurses, firefighters, police and paramedics. These are the people that are putting their life on the line to help those of us, and they need our support and our prayers. God bless you, and I'll see you next week.

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Monday, Apr. 05, Through Sunday, Apr. 12 - Even though I spent the majority of my time in my home office this past week, I can honestly say that I had a fantastic week. With all of the self isolating rules that we have going on throughout the United States, for those of us who work from home, this really isn't anything out of the unusual. I'm still getting out once a week to go to physical therapy to do my workouts with Emily, so I guess until everything returns to what we consider normal, this will continue to be my life.


When I went for my workout this week, Emily and Laura transferred me from my wheelchair to the therapy table, and we worked on my balance and range of motion exercises. They've been extremely careful not to have other patients in the workout center when I'm there, which helps isolate me away from others who could possibly be sick. Emily and Laura, along with all of their staff, wore surgical masks to help keep themselves and their patients safe, and you can tell by the picture located in my journal entry, it made me feel like I was working out with a bunch of doctors and nurses. I'm a visual person, and I can read someone's face with regards to their reactions, and by both of them wearing surgical masks, this made it extremely difficult. I go to physical therapy for not only my workouts, I go to see smiling faces. With all of them wearing surgical masks, it just didn't seem the same, but I know that all of them are ready for things to return to normal as well, so even though it felt somewhat odd not to be able to see them smile, I knew that they were still safe and healthy.


I wasn't planning on posting a video to my YouTube channel this week, but earlier in the week, we received some exciting news regarding Roche/Genentech's potential treatment known as risdiplam. The FDA wanted Roche to submit additional data regarding risdiplam, in hopes to expand the label to include a broader range of patients. They were planning on making the announcement no later than May 24 of this year, and with the submission of this additional data, the FDA has pushed the announcement by 3 months, to August 24. Even though we may be disappointed that we may have to wait an additional 3 months for the approval of risdiplam, this is actually exciting news. By waiting another 3 months, more people will be able to take this important treatment once it's approved. I have a gut feeling that the approval will probably come sometime in July, and if I had to guess, I would say that the approval may come on July 4. The reason why I make this statement is because the FDA is synonymous with making these announcements on important dates, and even though this is just a guess on my part, I still feel comfortable with my statement. My video details this announcement by the FDA, and I felt it was important enough to post my video a week early, so that I can bring you the latest information. Please share my video, along with the 2 article links that I posted in the description of my video with your family and friends, and make sure that you show your doctors these 2 articles, because I feel it's important for them to know this information as well. Click HERE to view my video.


My hopes and prayers are that all of you, including your family and friends are staying safe and healthy. Make sure you wash your hands on a regular basis, and please keep your hands away from your face, especially your eyes, nose and mouth. I also hope that all of you had a fantastic week, and I hope that you will do something for yourself this upcoming week that will make you a better person. God bless you, and I'll see you in 2 weeks.

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Monday, Mar. 30, Through Sunday, Apr. 04 - If someone would've told me 6 months ago that we would be going through the isolation that all of us are going through right now, I would've never believed it. COVID-19, otherwise known as the coronavirus, has literally turned our world upside down. We all feel like we've been grounded to our homes as if we did something wrong, and I guess the part that makes it tough on all of us, is that we had absolutely no control over our own destinies. This will definitely test all of our patience with regards to dealing with all of the isolation, but I know that over time, this will pass and everything will get better.


When I went for my workout this week, everything seemed as normal as it always has been. Laura and Emily made sure that I was the only one in the workout center during my workout, and Emily and I focused on my core strengthening exercises, along with some stretching exercises to loosen the muscles in my hips. Next week, Emily and Laura will transfer me from my wheelchair to the therapy table, and we will do my balance and range of motion exercises. With everything going on with regards to the coronavirus, their PT students were pulled away, and until everything settles down, Emily and Laura will not have any PT students. They are scheduled to get new students in May, but this may change in the next couple weeks.


In this week's video, I talk about COVID-19, and how we, as SMA patients, can deal with the isolation that all of us are going through. I give you some tips and tricks with regards to dealing with this isolation, and I also give you some advice with regards to talking to your family members in your doctors. Click HERE to view my video.


I fully understand that there's a lot of tension and anxiety with regards to each and every one's own circumstances, but please know that you can always send me an email or a message down below the video, and I'll be more than happy to answer them. We can get through this difficult time, as long as we rely on each other, and that we fully understand that things will get better over time. Please keep your head up, and know that all of you are in my prayers.


Please take time to take care of yourself, your family members and your friends, and try to do something this upcoming week that will make you a better person. God bless you, and I'll see you in a couple weeks.