Monthly Journal - April (2018)

Monday, Apr. 23 thru Sunday, Apr. 29 - While this past week was extremely busy for me, I managed to get through it without too much difficulty. In last weeks video, I told my subscribers and followers that I went to see a vascular surgeon for the problem that I was having in my right leg regarding numbness and pain. The vascular surgeon ruled out a blood clot, but to rule out an aneurysm in my right leg, he would have to schedule me for a CT scan at the hospital. This past Wednesday, I had the CT scan performed. About two hours after I returned home from the hospital, my vascular surgeon called with the results. He told me that he had good news and bad news regarding the results. While I was hoping that they would find something that they could either repair with medication or surgery, hearing the doctor tell me that there was some bad news literally made my heart stop for a brief moment. He explained that the good news was that there was no aneurysm found in the scan, and that all of my veins and arteries were clear of any calcification or plaque. The bad news was that I had severe muscle damage in my right hip and that much of the muscle that used to be in my buttocks has now turned to fatty tissue and scar tissue. Since I don't have a lot of muscle in my buttocks, the doctor explained that I'm nearly sitting directly on the nerves that are running into my leg and that this was causing the numbness and the pain that I was experiencing. I asked the doctor if there was anything that he could do regarding this issue, but he told me that from a medical standpoint, there was no surgery or medical procedure that could help me. He suggested that I look into a new seat cushion for my wheelchair. I will discuss this further when I talk about my physical therapy. My vascular surgeon did explain that they can prescribe muscle relaxants for me if the pain became too unbearable. With the opioid crisis happening in today's society and the number of people that are getting addicted to opioids, I told my doctor that I would rather find alternative ways of dealing with the pain if at all possible. I'm not completely ruling out the use of an opioid, such as and muscle relaxer, if and when the pain gets too bad, but until that happens, I'm sure that I could find some alternative measures that can help.


I went to workout as normal on Thursday with Laura. I went over my test results regarding my CT scan with Laura because I wanted to get her opinion on the proper kind of cushion that I should try. I trust her opinion because her sister is a paraplegic and I was sure that Laura dealt with this issue in the past. She recommended a Jay Active cushion because you not only sit on styrofoam, you also sit directly on a gel insert. Where you sit on your buttocks, the styrofoam is carved out and a gel insert is inserted so that your buttocks and tailbone sit directly on the gel insert. Laura said that this gel would provide better support and more comfort to my tailbone, which may help eliminate some of the pain that I'm going through. Later next week, I will start calling different companies that carry these particular cushions, so that I can possibly set up a time for them to come out and let me try this cushion out for a few days. Once I find the right cushion, I will let everyone know which one I selected and I will also provide pictures and documentation showing the reason why I picked that particular cushion.


After receiving the results of my CT scan from my doctor, I began working on this week's video. In this week’s video, I reviewed the results of my CT scan that was performed last Wednesday, April 25 at Baylor Scott & White Hospital in Irving Texas. Also, in this week’s video, I’m now shooting in 1080p resolution which will hopefully clear up some of the blurriness in my YouTube videos. I give my subscribers and followers a choice of either 720p or 1080p resolution. Make sure you give me your opinion in the description of the video so that I know which one you like best.  Click HERE to view my video.


Please be sure to do something for yourself this week that will make you a better person. Also, make sure that you do something for someone else that will not only improve their life, but it will also help them to improve their life. In next week's video, I will be discussing the upcoming Cure SMA conference that will be held in Dallas Texas. Next week's video should be packed full of information that I'm sure each and every one of you will find helpful. Keep a smile on your face and try to make the upcoming week better than the one that you just finished.

========================

Monday, Apr. 16 thru Sunday, Apr. 22 - Looking back over the past week, I can say without hesitation that getting older is for the birds. A good friend of mine told me that you know you're getting old when you go to more funerals that you do weddings. Over the past few weeks, I've seen more doctors than I have in a long time. While some of these doctors that I see are at the hospital when I go in for my treatments, but if you include my internist, neurologist and vascular surgeon that I've seen over the past couple of weeks, I can say without too much reservation that I have made car payments for each one of these doctors. On Thursday, April 12, I received a phone call from my neurologist's secretary informing me that it was time for me to come in for my yearly face-to-face meeting. I went to see my neurologist this week so that she could not only do her strength test and physical examination on, but she could also rewrite my prescription for Spinraza. After her examination, she performed a strength test on me and compared those results with the results that she got when we first started. To her surprise and to mine, I have improved in every category. My grip strength, biceps and triceps strength, shoulder, back and neck strength, range of motion and core strength all improved significantly. While nobody enjoys going through these types of tests, it was quite satisfying to know that other people are seeing the positive results regarding not only my treatments, but also my physical therapy. My neurologist told me that while the Spinraza treatments are definitely doing me some good, she also told me that my physical therapy workout schedule has also been a key factor as to my increase in strength. Since I improved on all of my strength tests, she went ahead and rewrote my prescription so that I can continue my treatments. She also faxed a copy of my current and past strength tests to my physical therapist, Laura, so she could see the improvements that have occurred over the past four to five months.


I finally received a phone call from Baylor Scott and White Hospital in Irving Texas informing me that my CT scan was scheduled for this coming Wednesday, April 25. My procedure is scheduled for 3 o'clock in the afternoon and I have to report to the hospital at noon so that they can put a pick line in my left arm and do all of the prep work that they need to do before the procedure begins. My hopes are that they find an aneurysm in my leg. I never thought that I would ever hope that doctors would find it aneurysm, but if it is an aneurysm that is causing problems, they can correct. If it is not an aneurysm, this will be a problem that I have to live with for the rest of my life. The vascular surgeon told me that if it is not an aneurysm, it's probably muscle and nerve damage caused by me sitting in a wheelchair for nearly 53 years.


I went to workout on Thursday with Laura. All of my exercises went smoothly and Laura even added two new exercises to help me increase my oblique muscles so that I can better stabilize myself while sitting in my wheelchair. The exercise involves taking the red resistance band, and as I sit straight in my chair, Laura tries to pull me toward her. My job is to resist going either left or right depending on which side we are working on. We started out with one rep for three minutes on each side, and we will increase the number of reps until I am able to perform this exercise without her shifting my body weight while sitting in my chair. As I increase my strength in this exercise, we will move to a different resistance band until we get to the black band which is the one with the most resistance. While it may take me a while to get to that point, it's another exercise that's going to help me in my daily life. I used to be very hesitant in going down my wheelchair ramp in my van, especially when parked on a decline. When this would happen, I would have to have somebody put their hand on my chest to make sure that I did not fall forward while going down my ramp. Now, I can go down the ramp without having anyone assisting me. The exercises that Laura and I are doing are definitely helping me.


In this week's video, I give my subscribers and followers an update with regards to what's happening in my life, including my upcoming CT scan and my visit to my neurologist that occurred earlier this week. My CT scan is scheduled for next Wednesday, and I will include the results from this test, along with what doctors plan on doing if they find an aneurysm in my leg in next week's video. I received some exciting news from my neurologist regarding my physical strength, and I'm excited about sharing this information with those of you that follow me and subscribe to all of my social media accounts. Click HERE to view my video.


Make sure that you do something for yourself this upcoming week to make you a better person, and be sure to do something for someone else this upcoming week to not only improve their life, but to make them a better person as well. I hope that your upcoming week will be better than the previous, and remember, keep a smile on your face because we all have so much to look forward to.

========================

Monday, Apr. 09 thru Sunday, Apr. 15 - This was one of the craziest weeks I've had in a long time. After going through my annual physical, my doctor detected a problem with the blood flow in my right leg. She gave me a referral to a vascular surgeon so that they could run some tests to determine what was causing my right leg, calf and ankle to go numb. Since I was unable to go to physical therapy until I went to the vascular surgeon, I've made sure that I got an appointment this week. My doctor did not want me to go to physical therapy since this problem could invented blood clot and she wanted to make sure that I did not exert myself too much to cause any further damage. On Wednesday of this week, I went to the vascular surgeon and after he examined me, he determined that it was not a blood clot. He told me that the problem that was causing all of my discomfort may be an aneurysm. He explained that while there is the main artery running down your leg that transports blood, there's another artery that acts as a backup or secondary route for the blood to take. The problem may be caused when too much blood is being pushed through this artery. When this happens, he explained that the artery will swell up, and the pain that I'm feeling is caused when the artery swells up and expands. The vascular surgeon is in the process of writing his instructions and he will submit his findings to the Interventional Radiology Department at Baylor Scott and White Hospital in Irving Texas. Once I make the appointment, after they call me, I will go ahead and they will perform a CT scan on my right leg. I informed the vascular surgeon that he needed to make sure that they had a lift that could get me out of my wheelchair and onto the CT table to perform the procedure. They will also insert a PIC line and my arm so that they can run contrast through my veins to make it easier to detect whether or not I have an aneurysm. If the scan does show an aneurysm, the vascular surgeon said that he will admit me into the hospital and they will do a surgical procedure to expand this artery so that he can accept the amount of blood flow that it needs to. I asked the surgeon to explain the surgery to me and he told me that it's similar to an angioplasty that they do on someone's heart. They insert a tube into the artery and once they get to the proper location, they expand a balloon in the artery to increase the size of the artery. He told me that this procedure is becoming more routine and I shouldn't have any problems if they have to perform this procedure on me.


Since the vascular surgeon found that my problem was not a blood clot, he wrote me a release so that I can go back and resume my physical therapy. On Thursday, I went to physical therapy with Laura. Since it had been two weeks since my last work out with her, and since I was unable to do any physical therapy at home during this time, she modified my work out to where it was not so intense. The only exercise that I had to decrease the number of repetitions that I normally do was my side exercise where I lean to my right. Laura wants to go easy on this particular exercise until I get the CT scan performed on my leg just to make sure that I do not aggravate an already sensitive area. The rest of my work out was normal and I had no problems completing all of my exercise. Since it and then a total of four weeks since Laura's last evaluation of me, she went ahead and reevaluate me so that she could send in the paperwork to my insurance company. Out of the five exercises that she evaluates me on, I improved my range of motion on two them, stayed the same on two of them and got worse on one of my measurements. She told me not to be concerned about the measurement that showed a decrease in range of motion because it'd been two weeks since I've done any physical therapy and she believed that this was the reason why this happened. She felt confident that I would improve on my next reevaluation.


I spent quite a bit of time this week working on Sundays video. This was probably the most difficult video that I've done so for on my YouTube channel because it is the subject that I had been wanting to speak about for a long time. It is also one of the longest videos that I've ever done on my YouTube channel as well. In this week’s video, I discuss the concepts of accepting the reality of life while living with Spinal Muscular Atrophy, and I also share what I did in my life regarding letting go of some of the fears that I live with on a day-to-day basis. Throughout my life, I’ve noticed that many people living with certain handicaps tend to dwell in self-pity. While it would be easy for me to throw my hands up in the air and let this disease take full control of my life, I refuse to let this happen because it would go against everything that I not only believe in, but it would go against everything that was instilled in me by my family while growing up. My hopes and prayers are that this video will give not only inspiration to some of you, but it will also help you by learning to accept your handicap and possibly learn how to release some of the fears that you too live with in your daily life. Click HERE to view my video.


I hope that everyone has had a fantastic week. Make sure that you do something for yourself this week to improve your life and make sure that you do something for someone else this week to improve the way that they live their life. Trust me, if you do this, you will not only feel good, it will make someone else feel good as well. I hope that everyone enjoys this week's video and I hope that it is a message that will find its way into your heart.

========================

Monday, Apr. 02 thru Sunday, Apr. 08 - While I was hoping that this week would be better than the previous, it seems that my bad luck followed me into another week. Last week, I went to my doctor for my annual physical. While I was there, I told her that my right leg had been hurting for a long time. When I sit in one spot for a long period of time, my right leg tends to go numb from my calf all the way down to my ankle. This is been a problem for the past couple of years, but I never really gave it much thought because if I repositioned myself in my wheelchair, the numbness and pain would usually subside and go away. Lately though, the numbness and the pain are getting worse. After my physical, my doctor put my feet and these padded shoes that were connected to a heater. She turned the heater on to warm up my feet, then she put an oximeter on the second toe of each foot. The oximeter showed good oxygen levels on my left leg and foot, but it showed poor oxygen levels and decreased blood flow in my right leg and foot. She recommended that I go see a vascular surgeon so that they could examine my leg to find out why the numbness and pain were happening. Given her advice, she recommended a vascular surgeon in my area and I called and made an appointment for Wednesday, April 11. My doctor wants to rule out a blood clot or any kind of arterial blockage. She also told me that she did not want me to go to physical therapy until after I get the results from the vascular surgeon.


I called Laura on Tuesday and told her what my doctor told me. Laura told me not to worry about anything and to let her know what the test results revealed. I found out later in the week, that if the vascular surgeon found a blood clot or blockage, they would immediately admit me into the hospital so they could start me on blood clot medication and if necessary, schedule surgery. I haven't really been able to do any physical therapy for the last two weeks, and I really miss it. After physical therapy, I feel so much better. Not being able to physical therapy for the last two weeks has made me feel quite lethargic. Hopefully, the doctors will be able to find out what's wrong with my leg and correct it so I can get back to my normal schedule. NOTE: If for some reason the doctor decides to admit me into the hospital for treatment and/or surgery, next week's video could be delayed. If everything goes well and I am not hospitalized, Sundays video will be on time.


I spent a few days this week preparing my Sunday video. In this week's video, I give all of my subscribers and followers an update with regards to my bloodwork results from my physical that I did last week. In the PowerPoint presentation that I do in my video, I go back and gather my bloodwork results for my physicals in 2016 in 2017. Within the presentation, I show the results for three years and discuss what my doctor told me regarding these results. One of the questions that I had asked whether or not I felt that physical therapy was doing me any good. After viewing the presentation, I think I demonstrate how a change in my diet and going through physical therapy has definitely been a turning point in not only my physical condition, but my overall feeling of increased strength and energy. Click HERE to view my video. Toward the end of my video, I discussed a little bit about the topic for next week's video. Next weeks video will be the longest and most difficult video that I have done on my YouTube channel to date. The topic that I discuss is something that we will all think about at one point in our life, and to properly do this video justice, I will also be discussing a few of my religious views regarding this topic. I understand that you may believe in a different God than I do, and while I will never push you to believe and prescribe to what I believe in, I feel that if you watch this video in its entirety, the message that I give to everyone should be inspirational in some way, and I hope my message has an impact on your life.


I hope and pray that everyone has had a fantastic week. Please remember that all of us face challenges each and every day, and having a positive outlook on life and keeping a smile on your face will definitely improve the way that you handle difficulties, and in the way that you conquer these inevitable problems. I hope that you have done something this week to make you a better person, and I hope that you have done something for someone else that has improved the way they live their life. Thank you again for all of your support and I hope that your upcoming week is better than your previous week.