Monthly Journal - July (2020)

Monday, July 27, Through Sunday, August 2 - The past 2 weeks have been somewhat topsy-turvy, with regards to some health problems that I've been going through. I've noticed quite a bit of swelling in my feet and ankles over the past couple of weeks, and it finally got to the point to where I needed to do something about it. On top of all of this, my work schedule is keeping me extremely busy, but I do feel like the coming weeks will be much better than the previous.

Before I discuss my physical therapy, let me explain what happened. For about the last month, I've been noticing a significant increase in swelling in my feet, ankles and lower legs. It finally got to the point where I needed to get this checked out by medical professionals to make sure that there wasn't anything more significant going on in my body. My internist suggested that I go to my local emergency room and have doctors check me out. While I wasn't thrilled to go to the emergency room, given the pandemic situation that we are all facing, it was a risk that I felt worth taking, because my feet and my ankles were starting to become very sore. After arriving in the emergency room at Baylor Scott and White, in Irving Texas, and after going through the check-in process, they took me to a room where a doctor could see me. When the doctor came in, we discussed the swelling in my feet and ankles, along with the swelling that was present in my lower legs, and he checked both legs with regards to capillary return. Both legs had excellent capillary return, and the doctor said that since this was happening bilaterally in both legs, he said it probably wasn't anything serious like a blood clot. To be safe, he ran a series of blood tests to check for liver and kidney function damage, along with the possibility of congestive heart failure, (CHF). The bloodwork came back perfect, and my CHF test came back negative. It was nice to hear that I tested negative for CHF, because this does run in my family. After consulting with the doctor, he prescribed a 4 day prescription of Lasix. And told me to take (2) 20 mg pills each day for the next 4 days. Along with doing this, he also told me that it might be advisable for me to go to bed around 3 PM each day, so that I could elevate my legs and my feet. He also told me to check with my physical therapists, to see if they could do anything with regards to the swelling. The doctor finally told me that this was probably something that I ate, especially something that was high in sodium, so he said to be careful with the foods that I eat over the next couple weeks just to make sure that I was eating items that were low in sodium content.

When I went to physical therapy, Alex and Emily, along with their DPT students, Danny and Hunter, transfer me from my wheelchair to the therapy table. While our main concern was the swelling in my feet and ankles, we still did about 15 minutes of balance exercises, along with about 15 minutes of stretching and range of motion. After this, they rotated me on the table to where my feet were at the head of the table, so they could raise and elevate my legs. After this, Danny and Hunter began pushing the swelling from my feet and ankles toward my upper body, where hopefully, this excess fluid could be dispersed from my body and possibly eliminated through my urine. I was expecting this to be somewhat painful, but I found that this procedure actually felt good, and the results were far better than I expected. Even though the swelling didn't go down a considerable amount, it did go down enough to give me some relief from the pain and the pressure that I was going through. Emily and Alex's PT students will be leaving before I go back to physical therapy next week, so both Emily and Alex have said that they would perform this massaging technique on my feet and ankles every 2 weeks when they transfer me to the PT table. While I don't have any pictures of this procedure, we did video this procedure, and I've included that video in this week's YouTube video. A link to this video can be found below.

In this week's video, I talk about some of the recent problems that I've had regarding the swelling, and I show the video we took, which will detail and demonstrate how this procedure is done. Since the majority of us who have SMA spend the majority of our days sitting in our wheelchairs, this procedure may be beneficial to patients like us. Make sure that you talk to your physical therapist if you are experiencing this type of swelling in your legs, and they should be able to do this same procedure on you. I hope and pray that you can get the same relief that I did. Click HERE to view my video.

I 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 soon.

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Monday, July 20, Through Sunday, July 26 - This was another one of those weeks that just didn't seem to go as I planned. Ever since my Spinraza injections, I've been experiencing quite a bit of swelling in my feet and ankles, and it got to the point to where I had to go to the hospital on Thursday. Plus, with everything else going on, this made for a very interesting week.

When I went for my workout on Tuesday, Danny took all of my measurements for my 4 week reevaluation. My numbers turned out good, but after we finished all of the measurements, we decided to go ahead and check on the range of motion that I have in my legs. When I first started working on this with Laura, my former PT, I had a -46° bend in my right leg and a -38° bend in my left leg. Even though we no longer measure these on a weekly basis, like we used to, we thought it would be interesting to see if there had been any improvement. To our surprise, the improvements were outstanding. I now have an -18° bend in my right leg, and a -16° bend in my left leg. This tells me that what we're doing each and every week is paying dividends. Next week, Danny and Alex will transfer me to the therapy table, and we will do all of my normal range of motion and balance exercises. Since I've been having a lot of problems with the swelling in my feet and ankles, which I'll talk about in the paragraph, along with some of the prostate issues that I had had the week before, I wasn't able to do a lot of balance exercises 2 weeks ago, I look forward to getting back on the therapy table on Tuesday, because I'm feeling better, and I think I'll have a much better workout.

On Thursday, July 23, I woke up with extremely swollen feet and ankles, and while I tried to muddle through the discomfort, it was to the point where I couldn't do anything else. I went to Baylor Scott and White in Irving Texas, and when I got there, they took me from the ER to a private room where a doctor could examine me. When the doctor came in, he checked the capillary returning my feet and ankles, and said that everything looked good, but he wanted to go ahead draw some blood to make sure that my liver and kidney functions were okay. This is when the fun started. When the phlebotomist came into the room, the first thing that I noticed were her glasses. They were as thick as Coke bottles, and I knew that this was going to be an adventure. I say that, because my veins are so small, and they roll like marbles, so in the back of my mind, I knew that she was going to have a difficult time. After poking me 6 times trying to find a vein, she looked up at me and said that this was her first day on the job, and that I was her first patient. While I tried to be encouraging, after getting poked 6 times, I was just about to ask her to go get Ray Charles, because I think he could've done a better job than she did. I never said this out loud, but they never should have allowed her to work on someone in my condition, because she was nowhere ready for the challenge that my body and my veins were going to present to her. In my opinion, she needed to go back and work on an orange, to get her technique down first. When the next phlebotomist came into the room, they got the vein on the first try, but by the time that they got my blood to the lab, the blood had already started to coagulate. About an hour later, she came back into the room and said that they were going to have to draw the blood again. She again got the vein on the first try and drew the blood, and I told her not to speak with anyone or carry on any conversations until she got my blood to the lab, and to do it immediately, because they were not going to stick me again. To say I was frustrated would be an understatement. Finally, the doctor came back into the room and said that my liver and kidney functions looked excellent, and that I showed no signs of congestive heart failure, (CHF). The doctor gave me a prescription for 8 Lasix, and he told me to take 2 each day for the next 4 days. As I'm writing my journal on Sunday, I can tell you that the swelling has definitely gone down, but there's still quite a bit left. The doctor told me that when I go to physical therapy, I could ask my therapists if they could push the swelling from my feet and legs back up to my upper extremities, and when I spoke to Emily and Alex about this, they said that they would definitely be able to do this, and we would do this each week to help with the swelling that I'm experiencing. I'm not really looking forward to doing that, because it can be somewhat painful, but, I would rather go through 10 or 15 minutes of discomfort while they push the swelling to my upper extremities, versus having to go through what I'm going through right now. I've already warned both Alex and Emily that I'll probably scream like  "child", but I know that it will eventually help me. I'm actually going to take a video of them pushing the swelling out of my feet, and I'll include this in my next video that I upload to my YouTube channel. You should at least get a laugh out of me going through some discomfort. I probably won't laugh when it's happening, but it should make for a funny video.

I hope that all of you have had a fantastic week. Please do something for yourself this upcoming week that's going to make you a better person. God bless you, and I'll probably see you next week.

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Monday, July 13, Through Sunday, July 19 - This was one of those weeks that started out great, then for some reason, went downhill at a steady pace. It seems that once the snowball starts to roll downhill, trying to stop it can be a difficult task. Let's just say that I've had better weeks, but I also know that my luck will turn for the better as long as I keep my head up.

When I went for my workout on Tuesday, my new physical therapist, Alex, along with their PT student, Danny, transferred me from my wheelchair to the therapy table so that we can do my range of motion, flexibility and balance exercises. After my Spinraza injection on Monday, July 6, I started having some prostate problems. For some reason, my prostate decided to enlarge, causing it to be very difficult for me to sit up straight. Along with that, the swelling in my feet and ankles has also caused me some great difficulties. I'm not sure if any of these conditions were caused by the Spinraza injection, but it just seems funny that everything was going great until my injection. My balance exercises went well, but due to the swelling in my prostate, I could only sit up for a short amount of time. After doing my usual range of motion and stretching exercises, Alex asked if I had ever done any hip extensions while laying on my side. Emily had said that we were going to start working on some of those soon, so since we had a little bit more time, we decided to go ahead and try these. While laying on my left side, Alex held me in position by placing her hands on my shoulder and side. Once stabilized, Danny extended my right leg out straight, then continued to pull my knee behind the hip, which really worked on the quadricep muscle in the top of my thigh. While this wasn't the most comfortable exercise to do, everyone was glad to see that I got as much range of motion as they did. Once extending my right leg and knee as far as possible, Danny held this position for a couple of minutes. After doing this on my left side, they rolled me over on my right side and perform the same exercise on my left leg and hip. Once I was back in my wheelchair, I could really tell that these exercises were going to work, because I didn't experience any pain for the rest of the week in either hip. I wrote Alex an email telling her that I felt really good after this exercise, and she said that we would include this in our normal routine of exercise when they transfer me to the therapy table. After doing these hip extensions, Alex and Emily, along with Danny, hooked me up to a machine called a Game Ready. This machine pumps extremely cold water through bladders that you wear on your feet and ankles. While pumping this cold water through these bladders, it also compresses your feet and ankles to push some of the swelling back up toward your upper extremities. While I forgot to take pictures of the hip extensions, we did remember to take pictures of me using the Game Ready machine. Click HERE to view those pictures.

I've been receiving some great emails from those of you that are following me on my YouTube channel. There seems to be a lot of excitement regarding the upcoming approval of risdiplam, and I'll be addressing quite a few of these questions in my upcoming video in the next couple weeks. If you have any questions, you can either email me at smajourney51@gmail.com or you can also send me a message from my website by going to the homepage and scanning down to the bottom. Never hesitate to send me an email or a message, because the goal of my channel is to try to help everyone go through these different treatments and options that are available.

I hope that all of you had a fantastic week. This upcoming week, please do something for yourself that's going to make you a better person. God bless you, and I'll see you soon.

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Monday, July 6, Through Sunday, July 12 - Thank you Spinraza for a wonderful ride!! Now, I'm getting on the risdiplam train for my next adventure. Words like scary, nervous, anticipation, excitement and intrigue are words that best come to mind when thinking about the next part of my journey.

When I went for my workout on Tuesday, I got to work out with Emily again. I've been working out with Laura's PT student, Danny, but he was scheduled to do an evaluation that day with the new Director of the inpatient center that I go to, so it was really nice to spend some time with Emily and catch up on everything that's been happening in her life. Her pregnancy is going well, and after she returns from maternity leave, I will begin working out with her again. We did all of my usual core strengthening exercises, and she also had time to stretch my hips and legs while sitting in my wheelchair. Next week, Danny and Alex will transfer me from my wheelchair to the therapy table. The last time that we did my balance exercises, I was having quite a bit of difficulty. I'm hoping that next week will be better. While I know that I'm going to have good and bad weeks, it's frustrating to do really well one week, and then not so well 2 weeks later when you do the same exercise.

In this week's video, I discussed my last Spinraza injection that I had on Monday, July 6, and I also speak about the Covid-19 test that I had to go through on Friday, July 3. Along with this, I talk about my excitement about switching from Spinraza to risdiplam. Click HERE to view my video.

After being on vacation for the past week, I go back to work on Monday, July 13. I know that everything was taking care of while I was gone, but I'm sure that I'll be playing catch-up for a few days. I hope that all of you had a wonderful week. Please do something for yourself this upcoming week that's going to make you a better person, and I'll see you in a few weeks. God bless you.

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Monday, June 29, Through Sunday, July 5 - Trying to prepare for my next Spinraza injection, along with getting tested for the COVID-19 virus, along with all of my other responsibilities with BioNews Services, has definitely kept me busy this past week.

When I went for my workout on Thursday, I finally got the chance to work with Alex, one of my new physical therapists. Alex is the new Director of the Irving (Las Colinas) Green Oaks Physical Therapy outpatient clinic. In my journal entry last week, I stated that Laura was leaving to move to Houston with her husband and her son, and while I'll miss her, I was excited to get to be able to work with Alex. Since this was Alex's first time to work with me, she watched as Emily and their PT student, Danny, transferred me from my wheelchair to the therapy table. After this, Danny, Emily and Alex worked with me on my balance exercises and also my range of motion and flexibility exercises. While most people would be nervous about working with the new PT, Alex's attitude and demeanor put me at ease very quickly. I know that when Emily leaves on maternity leave to have her son, I will be in capable hands. When Emily returns, sometime in January or February, I'll be working with both her and Alex on a regular basis. My normal Thursday workouts have been changed to Tuesdays, which will make it easier for both Alex and Emily to schedule their times so that they can both be available to work with me for the entire hour.

On Monday, July 6, I'm scheduled to receive my 12th Spinraza injection. (4 Loading Doses + 8 Maitenance Doses) As most of you already know, I'm planning on transitioning from Spinraza to risdiplam, once it's approved by the FDA sometime in August. My neurologist is already aware of my intentions, and she and I are in close contact with regards to getting everything ready for this transition. She's working on getting all the paperwork necessary for me to sign once the FDA makes the announcement, and I'm hoping that by September, to be on risdiplam on a permanent basis. As I learn more, I will update not only my website, but also my YouTube channel.

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. Go bless you, and I'll see you soon.

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.

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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.

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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.

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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.