SMA News Forums Forums Our Community Adults ​With​ ​SMA My Weekly Journal – 10/08 Through 10/14

  • My Weekly Journal – 10/08 Through 10/14

    Posted by michael-morale on October 14, 2018 at 12:58 pm
    Monday, October 8, Through Sunday, October 14 – This week was one of those weeks where I wanted to trade in my minivan for a boat. Since the beginning of September, the Dallas-Fort Worth Metroplex has seen over 16 inches of rain, and this weekend, we are expected to get another 4 to 6 inches of rain, making September and the beginning of October the wettest two months that we have seen him since the early 60’s. Given that we had so much rain this week, I spent the majority of my time working on YouTube videos for my personal channel along with the YouTube channel for Bionews Services, the company that I work for. As much as I love staying in and hibernating in the comfort of my home, I would really love to see the sun come out and dry a lot of this moisture up. I hadn’t been able to get my yard mowed in the last two weeks because it’s been so wet. Unfortunately, the forecast for the next seven days is calling for more rain and much colder temperatures.
     
    Since I had a conference call for work scheduled for Thursday, I had rescheduled my workout with Laura for Tuesday. Sunday evening while laying in bed, the weather forecast called for heavy rains all day Tuesday, so on Monday morning I called and rescheduled my workout for Wednesday. When I went to work out on Wednesday, Laura and her physical therapy students, Katherine and Lauren, continued the same exercises that you saw in last week’s video. I purchased a different slide board and brought it with me to work out. Laura’s slide board was made of plastic. Even though I was wearing pants that would make it easy for me to slide in, the plastic caused quite a bit of friction, which made it very difficult for Laura to transfer me. I purchased a slide board that was made out of wood, and when we used it this past week, Laura, Katherine and Lauren found it much easier to transfer me from my wheelchair to the therapy table. Once on the table, I sat unassisted, without any support on my back or my sides, for a total of fifteen minutes. In the video that I did last week, I sat unassisted for just over five minutes, so this week was a definite improvement. After transferring me from my wheelchair to the therapy table, I found it much easier to gain my balance, and while I was sitting unassisted, I worked on leaning to my left and to my right and regaining my balance so that I could sit back up in a neutral position. While I sat there, Laura, Katherine and Lauren began sitting down next to me and then getting up, which through my balance off quite a bit. Every time that they set down, the therapy table would move just a little bit. This small amount of movement in the therapy table made it difficult for me to keep my balance, which is exactly what they were trying to do in the first place. I felt my abs firing constantly which helped keep me balanced. While sitting there, we watched the video that I produced last week and Katherine and Lauren said that they were going to use this video in their class to show the other PT students what they were doing with me in case any of them ever encountered a patient that had the SMA. I told them that they would probably be seeing more patients with SMA, given the fact that there are so many of us that are now on active treatment with Spinraza. I didn’t realize that I had been sitting there fifteen minutes until after we finished watching the video, and Laura, Katherine and Lauren were all surprised at the amount of time that I was able to maintain my balance. As we were reaching the fifteen minute mark, I started to get tired and found myself starting to lose my balance. Overall, we were all quite surprised at the amount of time that I was able to stay in this upright position. After we finished watching the video, Laura and Katherine laid me down on my back and began my stretching exercises. Laura told me that my range of motion, just over the past three weeks, has improved quite significantly. While there are those that only find achievements after seeing large amounts of improvement, my achievements are measured in inches. Hearing your therapist tell you that they see significant changes can definitely put a smile on your face. I was quite proud of the fact that my range of motion had improved that much. The only difficulty that we had was when we started working on my feet and toes, flexing them back up toward my body. In last week’s video, I told everyone that this was the most difficult part of my therapy so far. I received a few questions from subscribers in my email last week asking me why my feet and my toes were so sensitive. If you watched last week’s video, you’ll notice that I have significant swelling in my feet and my toes, and I point this out in this week’s video. Laura recommended that I purchase some compression stockings. I’ve been hesitant in doing this because they are so difficult to get on, but Laura told me that she would put them on me when I come to work out on Thursdays, and after wearing them for 4 to 5 days, I could remove them and she would put them back on every time I come to work out. With this being said, I purchased some compression stockings and I will take them with me on Thursday when I go to work out. By getting some of the swelling out of my feet and my ankles, this will not only make this part of my physical therapy easier, it will probably make it much more tolerable as well. Next Thursday will be Katherine’s and Lauren’s last week to work with me. While I’m definitely going to miss the both of them, I know that they will be successful physical therapists after they finish all of their school and they pass their boards.
     
    In this week’s video, I’m giving my subscribers an update on what happened with me during this week, and I also talk about my plans for next week. On Tuesday, I’m going to see a pulmonologist. During the 2018 Annual Cure SMA conference, one of the classes that I attended spoke about how those of us with SMA can improve our lung strength. The instructors talked about the advantages of seeing a pulmonologist, so I made an appointment to go see one. This doctor is located at UT Southwestern Medical Center, the same place where I’m receiving my Spinraza injections. This pulmonologist specializes in patients with SMA, so I know that he should be aware of my disease and know some of the challenges that I am facing regarding my breathing. I’m hoping that this doctor will prescribe a cough assist machine for me which will help me expel some of the build up of phlegm and mucus that is gathering in my lungs. My recent hospitalization for pneumonia made me realize just how important getting a cough assist machine will be. When I start feeling congestion, I can use the cough assist machine to help me get rid of all of this buildup, which will hopefully keep me out of the hospital with another case of pneumonia. Click HERE to view my video.
     
    Since I’m working full time for Bionews Services, every once in a while, I get a chance to do a podcast interview with individuals that are active within the SMA community. I interviewed Shawn Stewart during this podcast interview. Shawn had an SIC port implanted in his body. He uses this Subcutaneous Intrathecal Catheter port so that he can receive all of his Spinraza injections. During my interview, Shawn describes his SIC port in great detail and gives the listeners the advantages of having this port when it comes to receiving your Spinraza injections. Even though this is still an experimental device, more and more doctors are agreeing to implant these ports in their patients. Currently, when I go in for one of my treatments, they must transfer me from my bed to a fluoroscopy table, and they must use fluoroscopic guidance during my procedure. I also have to receive a small amount of lidocaine to numb my back before the procedure begins. With this SIC port, patients no longer need any fluoroscopic or CT guidance and they no longer need any anesthesia for the procedure itself. By using the SIC port system, the cost of the treatments will significantly go down because there is less medical procedures that are having to be performed on the patient. Click HERE to listen to my podcast interview.
     
    I hope that all of you have had a fantastic week and I hope that you do something for yourself this upcoming week that will make you a better person. God bless you, and I’ll see you next Sunday.
    deann-r replied 5 years, 9 months ago 3 Members · 5 Replies
  • 5 Replies
  • kevin-schaefer

    Member
    October 14, 2018 at 2:55 pm

    That’s interesting about the compression stockings. I wore braces on my legs as a kid, but I haven’t worn shoes or anything on my feet in years. It’s just too much of a hassle for me. But let me know how those work for you.

    And good luck with your pulmonologist appointment. That first one probably will take a while, but I think it’ll be worth it. I see my pulmonologist more often than my primary doctor, and he’s great. Hope the weather there clears up!

  • michael-morale

    Member
    October 14, 2018 at 4:56 pm

    I know I said that I was thinking about changing my appointment due to the bad weather that we are supposed to get next week, but after careful consideration, I decided that I’m going to make this appointment come hell or high water. It took me a month and 1/2 to get the appointment with this doctor, so I’m afraid if I try to change it now, it may be next year before he can see me.

    Like they always say, no time like the present. Besides, if I get wet, I’m not going to melt even though I know I am made of sugar. (QUIT LAUGHING)

    • kevin-schaefer

      Member
      October 14, 2018 at 5:03 pm

      Hope you stay dry! But yeah, I know from experience that it can be difficult to reschedule an appointment with a pulmonologist or any kind of specialist. Hope it goes well.

  • michael-morale

    Member
    October 14, 2018 at 5:27 pm

    One of my subscribers to my YouTube channel posted the following comment: It is great you are seeing a pulmonologist. Anyone with MD should see a pulmonologist regularly. You should ask your doctor about breathing treatments. I take Acetylcystene and Albuterol and it has done wonders for my health. Albuterol will open everything up, and the Acetylcystene will thin out the thick mucus, which will make it easier to get it up.

    I’m curious as to how many people reading this post use Acetylcystene and Albuterol if they are doing these kinds of breathing treatments? If you are using these two drugs, how quickly can you tell a difference after you finish your breathing treatment?

    • deann-r

      Member
      October 18, 2018 at 10:57 am

      How’d the pulmonology appointment go?  I’ve only done breathing treatments when I’ve been ill.  Usually something called Duoneb that has albuterol and something else combined.  Never heard of acetylcystene, but I’m not as familiar with these medicines.  I do know many SMAers take a liquid albuterol for an energy boost.  That medicine messes with my heart rate though, so I’ve only used it with the nebulizer when sick.

Log in to reply.