Monthly Journal - August (2018)

Monday, August 27 Through Sunday, September 2 - It seemed as if this week would never come to an end. Why is it some weeks go by so quickly while others make you think that you’re doing nothing except watching the grass grow in the paint dry? This was one of those weeks where I honestly thought I saw the grass growing. While the watched pot may never boil, when you actually see grass grow, you know that you have too much time on your hand. My job with BioNews Services is keeping me busy, and I really have nothing to complain about other than the fact that I wasn’t able to go to physical therapy this week. Maybe that’s the reason why I feel the way I do right now.


My normal caregivers were supposed to return on Wednesday evening from their family vacation, but they called me on Monday evening and told me that they had an option to stay another two days and since they got a good price, they decided to do that. Unfortunately, this meant that I wasn’t able to go to physical therapy on Thursday with Laura. Overall, it’s not that big of a deal because I know that my caregivers are enjoying their vacation and they definitely deserve it. I called and spoke to Laura’s receptionist and told her that I was going to be quite busy the following week, so I will go in and work out on Tuesday of next week instead of next Thursday so that I can make sure that I get my workout in. Laura was on vacation this week as well this past week, so I would’ve had to work out with her new physical therapist that they just hired. I’m sure that I’m going to be working out with her in the future anyway, so missing one week is not that big of a deal. But, I will tell you that I definitely can tell a difference in the weeks that I do not work out versus all the times that I do. My energy level this week is been fantastic, I just miss working out with Laura and being able to burn off some of my excess energy. Hopefully, beginning next week, I’ll be able to make my work out each and every week for the foreseeable future. When I go to work out on Tuesday, Laura and her therapists will transfer me out of my chair like they did in my previous work out. I’m going to try to sit unassisted without any back or side support for over ten minutes during my work out on Tuesday. I know that I can do it as long as I can get seated in a comfortable position. After sitting unassisted, Laura and her new therapist will begin stretching my legs out and trying to stretch the hamstrings and quadriceps along with my feet and toes. As I said in my previous journal entry, stretching my legs out actually feels good, but when they do my feet and my toes, this is not so fun. I have a high tolerance for pain, but my feet and toes bring me to my pain threshold rather quickly. Be listening on Tuesday around 1:30 in the afternoon. (CST) If you hear  somebody screaming like a cat, it’s going to be me. I know I need to exercise my feet and my toes, but these are so sensitive that it drives me crazy.


In this week’s video, I’m changing the format as to how my future videos will appear on my YouTube channel. I’m going to try to make my videos a little bit more freestyle and less scripted in hopes to make my videos more enjoyable to watch. While I’ll still do videos containing PowerPoint presentations, some of my videos will just be me speaking to you one-on-one at a more personal level. This gives me the ability to answer some of your questions that you send me in my email and it also allows me to just be myself. In this week’s video I’m answering two questions from users. The first question deals with why I feel we are all lucky to be living in the United States and have the ability to take the Spinraza treatments. In the second question, I answer why I am so adamant and enthusiastic about taking physical therapy. Another issue that I discuss is more on the personal level. Someone very close to me told me that I don’t smile enough in my videos, and I address this with a little humor and the promise that I’ll try to smile more in my future episodes. Click HERE to view my video.


I hope everyone had a fantastic week and I hope your upcoming week is better than the previous. Do something for yourself this upcoming week that's going to make you a better person. Until next Sunday, God bless. 

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Monday, August 20, Through Sunday, August 26 - This was one of those weeks that never seemed to end. My new job with BioNews Services is keeping me busy, and since my caregivers are on vacation until Wednesday of next week, having two other caregivers in my house has actually gone a little smoother that I first anticipated. I’m usually in my office from 7:30 in the morning until about 9:00 at night, and much of this time is spent working on videos, podcasts and other activities related to my new job. I’m very thankful to have this new job because he gives me a chance to work out of my house without having to travel each and every day and fight the terrible traffic on our highways. Overall, I would say that this is been a pretty good week. 


I usually work out on Thursdays, but since my caregivers are going on vacation this week, I had to rearrange my workout with Laura. On Monday, Laura and her team of therapists transferred me for my wheelchair to one of the adjustable tables that they have. I was somewhat nervous about transferring from my wheelchair, but everything went much better than I thought it would. After transferring me to the table, Laura raised the table and put a box under my feet where my legs were level and my feet were flat on the box. Since this was the first time that I tried to balance myself without any back or side support, my nerves were racing. Laura was in front of me and Miles, her student therapist, was standing behind me. With a positioning strap around my chest, Laura and Miles got me in position and slowly started releasing their hold on me. I believe all three of us were somewhat surprised at how quickly I gained my balance and I was able to sit unassisted for over two minutes. While sitting unassisted, I leaned to my left and to my right and I was able to recover my balance and get back to a neutral position without any assistance. While the table was padded, it’s nothing like my wheelchair, and I began to get uncomfortable after about two or three minutes sitting up on the table. After about two minutes sitting unassisted, I began to get a little tired. Laura and Miles told me that for the first try, lasting two minutes was actually very good. Laura’s goals are to have me sit unassisted for up to ten to fifteen minutes each therapy session. I told Laura that keeping my balance was easier than I thought it would be, and I said that I knew that I could get up to that ten minute to fifteen minute mark in a short amount of time if I could just find a comfortable position. After sitting unassisted, Laura and Miles laid me down on my back and began stretching my legs. After removing my shoes, and as Laura began stretching my right leg, I think she was pleased that she could stretch my leg out as much as she did. As Laura worked on my right leg and Miles worked on my left leg, they also flexed my feet back is much as possible. Along with flexing my feet, they also flexed my toes to try to get as much movement in them as possible. Stretching my legs actually felt very good, but when they were working on my toes, this was very uncomfortable. Those of us who sit in wheelchairs for the majority of our day, have very sensitive feet. My feet are probably the most sensitive part on my body because let’s face it, they don’t always get a lot of attention. After stretching my legs, feet and toes, Laura and Miles transferred me back to my wheelchair, and Laura and I began our exercises on my neck muscles. After I got home from work out, I was a little bit tender in my right leg and hip but as the day went on, this tenderness went away. I was a little bit nervous that I would be uncomfortable in bed on Monday evening, but my hips and my legs felt great. On Tuesday morning when I woke up, quite a bit of the swelling in my feet had reduced, and while there was still some swelling, it was a marked improvement. I believe all of the stretching and the exercises that we did on Monday helped with this. This was Miles last week to be working with Laura, but Laura did hire another certified physical therapist that will be working with her full-time. When I go to work out on Thursday, August 30, Laura will be on vacation and I will be working out with her new physical therapist. I will resume working out with Laura the following week when she returns from vacation.


In this week’s video, I’m going to be giving you my tips on hiring a caregiver. Whether you are hiring a caregiver to be with you for a few hours each day, or if you are hiring a live-in caregiver that will be with you 24 hours a day, this is something that most of those who are affected by SMA will have to face at one time or another in our life. This process can be extremely frustrating, and my presentation will give you some tips on what you need to look for when you are searching for that one particular person that will help you in your day-to-day living. While these tips are the ones that I use when searching for my caregiver, please keep in mind that everyone will have different requirements, and this is something that you need to sit down and discuss with your family and friends before starting this process.  Click HERE to view my video.


I hope everyone had a fantastic week and I hope your upcoming week is better than the previous. Do something for yourself this upcoming week that's going to make you a better person. Until next Sunday, God bless.

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Monday, August, 13, Through Sunday, August 19 - This past week went by too quickly for me. Now that I'm working full time for BioNews Services, I seem to be much busier, which makes the days go by faster. We finally received over 3 inches of rain this past week, which was greatly appreciated by my yard and shrubs. I was finally able to turn the irrigation system off for a few days, which really makes me happy because free water means that I'm saving money on my water bill. Anytime I can save money on my bills, it definitely puts a smile on my face.


When I went to workout with Laura on Thursday, she told me that she received the slide bord, which will allow her to transfer me for my wheelchair to her adjustable table. This table will automatically move up and down, which will allow her to slide me out of my wheelchair onto the table so that we can begin stretching my hamstrings and quadriceps. This is very exciting for me because I am now going to be able to stretch these muscles which may help in some of the discomfort that I'm feeling in my right hip and leg. Last week, when I went to workout, Laura placed the palm of her hand under my left and right hamstrings and had me push with my legs to see if the hamstrings were activating like they should. She said that she did feel both of the hamstrings tighten and relax while I was pushing. She also did the same thing on the quadriceps which are the muscles on the top part of the leg. I'm not sure if we will use neuromuscular electronic stimulation on these muscles as of yet, but this will be determined when I go to work out with her next week. I know that these new exercises are going to be uncomfortable to go through at first, but Laura's hopes and my hopes are that these muscles will begin to responded to the stretching and the exercises that we are going to be doing. Laura did tell me that I would probably have some sore muscles in the beginning, but this doesn't bother me at all because I know that if these muscles are sore, we're doing something to them that could eventually help me gain some strength in my legs which could also benefit me regarding improving my balance while sitting in my wheelchair. My caregivers are going on vacation next week, so I will go to workout on Monday before they leave so that I can get my workout accomplished for next week.


In this week’s video, I’m discussing exon 7, and how this affects those of us with SMA. This is a topic that not many individuals know about, yet, this is one of the key reasons why those of us who have SMA are battling this devastating disease. While there is not a lot of information readily available on the Internet regarding exon 7, researchers and scientists have known about this for quite some time, and this is a subject that I believe all of us need to be more aware of. This is one of those topics that is better explained by someone who has a better working definition as to how exon 7 works, so I also provide a link to a YouTube video that goes into greater detail on not only exon 7, and why this information is so important for us to know about.  Click HERE to view my video, and click HERE to view the other video detailing exactly how exon 7 works.


I hope everyone had a fantastic week and I hope your upcoming week is better than the previous. Do something for yourself this upcoming week that's going to make you a better person. Until next Sunday, God bless.

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Monday, August 6, Through Sunday, August 12 - After nearly 3 weeks of temperatures above 100°, we are finally receiving some beneficial rains will and some lower temperatures. I love having a green yard, but when it doesn't rain for nearly a month, having to run my sprinkler system twice a week to keep the yard green becomes a very expensive undertaking. Along with an extremely expensive water bill, my electricity bill would gag a horse. Having two air-conditioners is nice, but when both of them run 24 hours a day for a couple of weeks, my electric meter spins so fast that it looks like it's going to rip away from the wall.


On Thursday, when I went to workout with Laura, the first thing that she did was to reevaluate me for my insurance. My valuation went well, and I improved on the majority of my tests. I actually declined on the test where I had to lean forward as far as I could and reposition myself back into a seated position. Laura told me that even though I may have not been scored as high as I did on my previous evaluation, she told me that it was probably due to the fact that I had been tired the entire day. I didn't sleep much the previous night, so she told me not to worry about my results. After the reevaluation, we did all my exercises. The neck exercise that I'm having difficulty with, where Laura pushes my head forward with the palm of her hand, went much better this week than in the previous weeks. Laura commented that she was having to push harder this week than she had in the past, and I was able to resist her for a longer period of time. She was extremely pleased with these results, and so was I. In the next couple of weeks, Laura is going to start working on some of the muscles in my legs. She's going to stretch out my hamstrings and my quadriceps, and we're going to start exercising these muscles in hopes to improve both conditioning and strength. Most able-bodied individuals have a 0° bend in their legs when they stretch their legs out all the way. I have a -31° bend in my right leg, and a -41° bend in my left leg. By doing some isometric stretches on my hamstrings and my quadriceps, Laura is hoping to improve the amount of negative bend in my legs. After stretching these muscles out, Laura or her PTA, Emily, will do some deep tissue massage on these muscles to try to loosen them up. This new part of my therapy where we are going to work on my legs is not going to be as fun as the exercises that I'm doing now, but I know that stretching these leg muscles out will help me. I guess the old adage of "no pain, no gain" will be something that I have to put up with as best as I can.


In this week’s video, I’m going to discuss the link between spinal muscular atrophy and ketoacidosis. A case report finds spinal muscular atrophy patients can be more prone to a life-threatening metabolic imbalance called ketoacidosis, which causes the blood to become acidic. Ketones normally are produced during periods of sugar shortage (fasting, starvation, intense exercise) as the body starts to break down fat for energy. If ketones are produced and accumulate too quickly in the blood and urine, they become toxic and eventually lethal. When ketones are produced, they are consumed mostly by muscle fibers. In people with reduced muscle mass, such as in SMA, ketone consumption is lower, promoting ketoacidosis. In addition, muscle atrophy reduces the supply of amino acids (building blocks of proteins) as a source of energy and the body shifts toward the breakdown of fats and producing ketones. Click HERE to view my video.


I hope everyone had a fantastic week and I hope your upcoming week is better than the previous. Do something for yourself this upcoming week that's going to make you a better person. Until next Sunday, God bless