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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 2 replies, 2 voices, and was last updated 1 year, 5 months ago by Michael Morale.

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    • #17282
      Michael Morale
      Keymaster
      Monday, February 11, Through Sunday, February 17 – It seemed that everything fell into place this week like a well-crafted jigsaw puzzle. I think the most surprising thing that happened to me this week was the way that I felt. My energy level was phenomenal and it seemed like I have more strength in my right arm. I know this may sound odd, but I measure my arm strength by how easily I can get my vapor stick up to my mouth. I usually have to set my right hand on top of my desk with my vapor stick in it, then leaned forward to get the biggest into my mouth. Throughout this entire week, I could lift the vapor stick up high enough to get it in my mouth without having to use my desk as a support. My neck muscles feel stronger, my right arm feels stronger, and my overall energy this week has been somewhat surprising. I go back to UT Southwestern Medical Center in about three weeks for my next injection of Spinraza. Usually, with about two or three weeks left before my injection, my body starts to slow down in my energy level begins to slow down. I’m finding it somewhat surprising that my energy level and my strength is as great as it is considering that I’m about to go in for my next injection. Maybe my body is getting used to some of the changes that I’m trying to make to it, because I haven’t felt fatigued for a week and some time now.
       
      When I went in for my workout with Emily on Tuesday, we had to do my 4 week reevaluation. This normally takes about 30 minutes, but this time, it only took Emily about 15 minutes to perform this reevaluation. Both Emily and I were surprised at the results that we got, and you can see my test results on my website. Click HERE to view my test results. Overall,My test results came out better than expected. When I first began the exercises on my left and right leg, we took measurements with regards to the amount of negative degrees that my legs are bending. When we started in October 2018, my left leg had a -27° bend, and my right leg had a -40° bend. After working on the stretching and range of motion, along with the ligaments and tendons in my knees, both the legs are now at -23°. While this may not have been a major improvement in my left leg, both Emily and I agree that the amount of correction that we have received on my right leg has been substantial. The amount of dorsi flexion in my left foot and right foot have also improved, with the largest improvement coming in my left foot. When I started in September of last year, the dorsi flexion in my right foot was -28° and it was -34° in my left foot. Last week, the amount of dorsi flexion in my right foot was -27°, and I had -26° in my left foot. Both Emily and Laura recommended that I get the dorsi flexion braces for each foot, and when I received these braces, I will wear them a few hours each day, which will hopefully better correct the amount of negative degrees in my feet. The rotation inside bending in my neck have also improved, with the greatest improvement coming when I rotate and bend my head to the left. The amount of degrees that I could rotate and bend my head from side to side will fluctuate, depending on how tight these muscles are during the reevaluation. Overall, Emily and I were extremely pleased with the results that we got and we will continue to work hard to improve these numbers. When I go for my workout next Tuesday, Emily will transfer me out of my chair and work with me on my balance exercises, along with the stretching and range of motion exercises on my knees, legs, ankles and feet.
       
      In this week’s video, I share some of the information that I found regarding the combination therapy between Cytokinetic’s drug Reldesemtiv, and Biogen’s treatment Spinraza. I also share the results I received in my four week physical therapy reevaluation. 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.
    • #17303
      Adnan Hafizovic
      Participant

      Good video Michael,full of usefull details.

    • #17313
      Michael Morale
      Keymaster

      Thanks Adrian. I appreciate your comments.

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