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How different generations living with SMA can teach one another

Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends at Cure SMA need to meet this amazing mom and get her involved.’”


This topic has 0 replies, 1 voice, and was last updated 1 year, 6 months ago by Michael Morale.

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      Michael Morale
      Keymaster
      Monday, January 7, Through Sunday, December 13 – This has been one of those weeks where I felt as if I could conquer the world. My energy and strength levels have been incredible. The slight weakness that I experienced a few weeks ago in my neck has disappeared, and my energy level and even the strength in my arms has felt fantastic. I fully understand that I’m going to hit rough patches, and have those occasional weak days, but I’m finding those days are becoming fewer and fewer. I’ve been eating high-protein meals and have been taking my protein shakes, so I guess a combination of my Spinraza, my workouts with Laura and Emily, my dietary habits and my protein shakes are really starting to pay off.
       
      I was scheduled to go to physical therapy on Tuesday, but due to a mix up with my insurance, I wasn’t able to go in until Thursday. Since this is the beginning of the new year, we had to make sure that I would be covered for my physical therapy throughout 2019. I had been assured by my insurance that I could continue with my physical therapy, we just had to wait on some answers from my primary care physician before we could continue. After spending nearly 4 hours on the telephone with my primary care physician and my insurance company, we finally got everything worked out and I was able to return to physical therapy on Thursday. Knowing that I’m good to go for another year gives me a lot of enthusiasm and hope. When I went to my workout with Laura and Emily, they transferred me out of my wheelchair onto the therapy table. Once I was properly positioned, and I gained my balance, we began working on the exercises that work my core muscles. While Laura was standing in front of me, Emily stood behind me and began shaking the table to try to throw me off balance. When we first started doing this exercise a few months ago, this was difficult for me to do, because even the slightest shake of the table would cause me to lose my balance. After about two minutes of shaking the table, Emily began pushing me forward, backwards and side to side with her hands to tried to get me to lose my balance. They both commented how good I was doing with regards to not falling backwards or from side to side.
      While Emily wasn’t pushing me very hard, it was still encouraging that I was able to maintain and keep my balance throughout this exercise. When Emily would push me forward, this exercise was a little bit more difficult to do. While I maintained my balance throughout the majority of the exercise, I did reach that tipping point where I wasn’t able to recover. Luckily, both Laura and Emily grabbed me and helped me back into a balanced position. Overall, they were both very impressed with how much my balance has improved, and I contribute a lot of this to the fact that we worked so hard on strengthening my core muscles. As my core muscles strengthen, this will help me keep my balance during this first part of my exercise. After completing the balance portion of my workout, they laid me down on my back and began the range of motion and stretching exercises on my legs, knees, hips, ankles, feet and toes. As I stated in last week’s journal entry, these exercises are becoming more tolerable. When we first started these range of motion and stretching exercises on my legs, it was very uncomfortable. Now, I’m finding that these exercises actually feel good. My feet, ankles and toes are another story. These used to be extremely excruciating for me to go through, but now, as we stretch these ligaments and muscles, it’s not nearly as bad. It still more painful than working on my legs and my hips, but it’s getting easier each time that we do it, which gives me a lot of encouragement that these exercises are working as well. After Emily finished my leg exercises, she then started the rotation exercises on my neck. This is probably the best part of the therapy for me, because while either Laura or Emily work on my neck, I find it to be very relaxing. If only the other parts of my exercises and workout routines were as relaxing. Next week, I go through my next four week reevaluation, and I’m hopeful that my numbers have improved. I will post the results of my reevaluation on my website next week and will also update everyone on my video that I post to my YouTube channel on Sundays.
       
      In this week’s video, I’m going to be discussing my opinions as to whether or not you should begin taking Spinraza now, or wait until AveXis gets their drug, ZOLGENSMA, approved through the FDA to take this drug into treatment status. When ZOLGENSMA does become available, it will only be for infants that are nine months of age or younger, that have been diagnosed with SMA Type I. Over the past month, I’ve received emails from a few of my subscribers and followers asking my opinions as to whether or not they should get their infants involved in Spinraza or wait until ZOLGENSMA becomes available. These are very difficult questions for me to try to answer, but I do give my own personal opinion as to what I would do if I had an infant that was diagnosed with SMA type I. Click HERE to view my video.
       
      I hope that all of you had a fantastic week. Do something for yourself this upcoming week that will make you a better person. God bless you and I’ll see you next Sunday.
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