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    Adapting to Life Outside Our Home With SMA

    I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.

    I spend much of my time pre-planning and thinking of possible problems that we may run into because of the kids’ diagnoses. I think many other SMA parents do this as well. Prior to our lives with SMA, we didn’t realize just how inaccessible the world is to those who are differently-abled.

  • This topic has 0 replies, 1 voice, and was last updated 3 months, 3 weeks ago by Michael Morale.

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        Michael Morale
        Keymaster

        Weekly Journal 8/5/19 through 8/11/19
         – While I was hoping for an easy week, it ended up being full of activity and not much excitement. I did take a day of vacation on Friday. Thursday was my birthday, and I wanted to relax a bit. Trying to cram five days worth of work in the four days presented challenges. Still, I refused to let these challenges beat me. Suffice it to say that I won the battle, but it was a war that I don’t want to face for quite some time.
         
        When I went for my workout on Tuesday, Emily and Vikki transferred to the therapy table, and we worked on all my balance, range of motion, and flexibility exercises. I used to be have reservations about transferring, but Emily and Vikki have really mastered this process.
        All of my exercises went well, and other than a few sore muscles and some fatigue, everything went as planned. For some reason, I was a little bit tired on Tuesday during my workout. My sleeping pattern is good, and my energy level had been fine before then, but I just felt a little bit weak and lethargic. When I went home on Tuesday, I went to bed early.
        I was still a little bit weak Wednesday through Friday, but each day got just a little bit better. By Saturday, the only thing that was bothering me was my allergies. While I felt strong and my energy level was high, these allergies made my nose run and my eyes water relentlessly. My legs may not run, my nose would’ve beaten anyone in the 100-yard dash.
        During my workout with Emily, we finished taking pictures for her next SMA News Today HCP article. Since I was diagnosed with severe muscle and nerve damage in my right hip, we’ve been working on these muscles each week. Emily’s article addresses these issues. I’ll post a link to the article once it’s published.
         
        In this week’s video, I answer a question that quite a few of you have asked me in the past. The question revolves around my reasons why I chose not to be an Ambassador for Biogen. My reasons for not becoming an Ambassador were ones that I had to seriously consider, and I explain them here. Click HERE to view my video.
         
        I’ve updated the flash briefings that I do for BioNews Services. Click HERE to go to the flash briefings.
         
        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 in a couple weeks.
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