Monthly Journal - April (2020)

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.

Monday, June 22, Through Sunday, June 28 - This week was filled with errands and way too much work, but overall, it was a good week. The Dallas area is slowly shutting back down due to the pandemic, and everybody seems to be staying in their house, trying to stay isolated as much as possible.

When I went for my workout on Thursday, Laura's PT student, Danny, performed my 4 week reevaluation on me, and took all my measurements. Slowly but surely, my measurements are improving, and after we finished everything with regards to the reevaluation, we spent the rest of the time stretching my hips and legs. Thursday, June 25 was a very difficult day for me, because this was the last day that I got to work out with Laura. She and her husband and her son will be moving to Houston to begin a new chapter in their lives, and while I'm going to miss her, I know that she's excited about eventually opening her own outpatient clinic in the Houston area. Click HERE to view the pic that we took on my first day and my last day with Laura. Emily will still be my primary physical therapist, and over the course of the next few weeks, I'll be working with her along with the new director of the Irving facility. Alex is a DPT like Laura was, so I know that I'm in capable hands. When Emily leaves for maternity leave in either October or November, I will then be working exclusively with Alex until Emily returns, and when Emily does return, she will again  become my primary physical therapist.

We should be hearing something in the next 4 to 8 weeks regarding the FDA approval of risdiplam, so my work with BioNews Services is getting busier by the day. I go for my next Spinraza injection on Monday, July 6, and if all goes well, this may be my last Spinraza injection before I start risdiplam once it's approved by the FDA in August.

I hope all of you had a fantastic week and I apologize for getting my journal entry out a few days late. It seems like I need more than 24 hours in a day and more than 7 days in the week to get everything done that I need to get done, but things will settle down soon and I should be able to keep a more scheduled routine. Please do something for yourself this upcoming week that will make you a better person. God bless you, and I'll talk to you next week.

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Monday, June 8, Through Sunday, June 21 - I would love to be able to give you a great reason why I didn't update my journal entry in my website last week, but I can't. I always preach about how everyone has 24 hours in a day, but lately, I'm finding that I need more than that just to get through my day. My schedule and everything that I'm going through right now has been keeping me extremely busy, so please accept my apologies. My work schedule for BioNews Services, along with some personal things that I'm going through right now, occupied the majority of my time, so I guess I'm like everyone else regarding the limitations of time.

My past 2 physical therapy sessions have been great. Next week will be my last week to workout with Laura, because she and her husband and her son are moving to Houston, where she will eventually open her own outpatient clinic. I know that she's excited about this new time in her life, but I'm going to miss her tremendously, because she's helped me so much with regards to my physical conditioning. When you meet good people in your life, the hardest thing that you can do is to say goodbye to them, but I know that she's happy with her decision to move on to a different chapter in her life, and as long as she's happy, saying goodbye will be much easier. I'll still keep in touch with her via email and possibly some phone conversations, but I'll miss seeing her each week when I go in for my workouts. Emily has been my primary physical therapist the past year, and unfortunately, I probably won't get to work out with her too much longer because she's pregnant, and since she won't be able to physically transfer me and do some of the physical aspects during my PT sessions, I'll be working with the new director that will be coming in in just a few weeks. Her name is Alex, and she will be taking over for Laura as the new director. I had a chance to meet her the other day when they through a going away party for Laura, and I know that I will enjoy working out with her as well. After Emily has her baby in November, and once she returns from maternity leave, I'll then go back to Emily as my primary physical therapist. Even though change is inevitable, and it's something that we all must go through, it can still be challenging. I'm thankful that Alex will be able to work with me, and look forward to working with Emily in the future.

In this week's video, I talk about one of the most difficult decisions that I've had to make in my life. On Saturday, September 13, I made it official with regards to my decision to switch from Spinraza to risdiplam. After going back and forth with my neurologist over the past 3 months, we decided that given my age, along with other factors, now would be the time for me to make the switch, and in my video, I give you the reasons. Click HERE to view my video.

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 soon.

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Monday, June 1, Through Sunday, June 7 - In last week's journal entry, I stated that I had one of the most uneventful weeks that I had had in a long time. This week, I had a little bit more to do. My job at BioNews Services kept me hopping from one side of the spectrum to the other, because this was the week that we brought back many of those who we had furloughed due to the Covid-19 pandemic. It was excited to see everyone return and get back into the swing of what we used to call normal activity. The Forums Director for BioNews Services, Kevin Schaefer, reports to me, and he did an excellent job ensuring that all the moderators were back on their normal schedules and doing what needed to be done for a seamless transition back to their usual work routines. As the Senior Director of Multichannel Content for BioNews Services, I'm lucky that I manage a great group of people who know how to do their jobs, and I can say without reservations, that they all do a fantastic job.

On Thursday, when I went for my workout, Laura and her PT student, Danny, transferred me from my wheelchair to the therapy table. 2 weeks ago, while working on my balance exercises, I was able to keep my balance without too much difficulty, and after getting positioned on the table this past Thursday, my balance was about the same. Laura made sure to make me shut my eyes during my balance exercises, which definitely made it more challenging, but I was still able to keep my balance and finish all my exercises. After doing some range of motion and flexibility exercises on my hips, legs, knees, ankles and feet, both Laura and Danny set me up in my long sitting position. With my legs stretched out in front of me, it makes it more challenging for me to keep my balance, because my left hip is higher than my right hip, but after getting in the proper position, I was able to keep my balance pretty well. Next week, we've had to reschedule my therapy from Thursday to Tuesday, because of some time conflicts with regards to my job with BioNews Services.

On Friday, June 5, I met with the representative from my wheelchair company, and we decided to go ahead and move forward with purchasing a wheelchair. I've decided to get the Permobil M3 Corpus, which is a great wheelchair that will help me continue to keep my freedom and independence. I'm so used to sitting in a wheelchair with a sling seat and a sling back, but since wheelchair manufacturers have moved away from using sling seeds and backs, this is going to force me into a wheelchair with a hardpan seek. My representative and I came up with the idea of removing the seat and using a J2 cushion, it is this particular cushion as a gel insert. This gel insert will distribute the weight much better and make it more comfortable for me to sit for longer periods of time. Even though I know that I'm going to go through a rough patch getting used to sitting in a new wheelchair, the newer wheelchairs are much more technologically advanced, and the functionality and newer capabilities of these wheelchairs are simply outstanding. To see what my new wheelchair looks like, click HERE.

In this week's video, I discussed taking the time to talk to your doctors about risdiplam. We're probably just a few months away from the FDA approval of risdiplam, and I stress the importance of talking to your doctors now. I talk about discussing the importance of having all of your paperwork filled out and ready to go so that you can file all of the information with your insurance companies, and I'm hoping that by watching this video, you'll have a head start with regards to getting everything ready to go if you plan on switching from Spinraza to risdiplam, once it's approved by the FDA. As we get closer to the approval of risdiplam, I will make sure that I keep everybody updated with the most current information. Click HERE to view my video.

I hope that all of the had a fantastic week, and I asked that you do something for yourself this upcoming week that will make you a better person. God bless you, and I'll see you soon.