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  • Spinraza Evaluations and Wrapping Up 2018

    Posted by kevin-schaefer on December 3, 2018 at 7:00 am

    My column this week is about relying on my parents more during the holidays while my caregiver takes vacation days, and managing holiday stress in general. It coincides well with everything that went on with me this past week. It was a productive week and I feel extremely accomplished, but by the time Friday night came I was pooped. I stayed home and watched movies on my DC Universe app.

    I had not one, but three medical appointments in the past week. I had my regular physical therapy on Monday, a physical with my primary care physician on Wednesday, and the MDA clinic on Friday. All went extremely well, but it was exhausting having them on top of my regular work schedule.

    I mentioned this in another post in the Spinraza forum, but I was able to score one point higher on my occupational therapy examination than I did last time. When I first started these evaluations last year after my first Spinraza injection, I thought they were kind of pointless and frustrating. The tests include flicking a coin into a plastic cup, drawing a line through a maze with a marker, moving a weight across a table, pressing a button to turn on a light switch, tearing a piece of paper in half and lifting my arms up. I was barely able to do any of these when I first started, but now I’m finding that I’ve gained a substantial amount of ability since going through six injections.

    The marker test in particular really surprised me this time. I completed the maze this time within a few minutes, whereas I was unable to finish it in previous attempts. That was the most I’ve drawn in years, as I lost the ability to handwrite when I was a sophomore in college. I think for a lot of us who are adults and on Spinraza, we don’t really notice the little effects of it on a daily basis. However, doing tests like this is a really good indicator of the drug’s effectiveness. For those of you who still have questions about Spinraza or have encountered any obstacles trying to get it, don’t hesitate to ask me or anyone else here who’s on this treatment. I was extremely skeptical about it prior to my first injection, but I’m beyond grateful that I went through it. My overall health has improved since starting this treatment, and seeing little gains in my physical abilities is huge.

    Like Michael said in his journal yesterday, it’s a busy time for us at Bionews Services (the parent company that owns this website and many others). We’re getting ready to launch four new forums for other disease communities in early 2019, and we’re already hard at work on those. I’m also working with the Community Manager for Cystic Fibrosis News Today, Luisa, on growing our audiences for the SMA News Today Podcast and YouTube channel. These are all projects I’m excited to be a part of, and I’m blessed to be able to work with so many great people. I’d rather be a little too busy than bored, and it helps that it’s all work I enjoy.

    Yet despite all of the business this week, I still had time to relax and enjoy time with family and friends as well. I went to dinner with a mentor-friend of mine on Thursday night, and we both really enjoyed that time. Anthony and I know each other through church, and because of his background in education he was a huge part of me getting into NC State. He’s also been going through a tough time lately, as his wife passed away a few months ago. I think he appreciated the opportunity to get out in the middle of the week, given that he’s had to deal with a lot of loneliness recently. We had a great time catching up, and it was an opportunity for me to thank him for everything he’s done for me and to talk about the work I do today. I also went to dinner with my family on Saturday night, and hung out with a couple friends at my local comic shop on Sunday afternoon.

    This week will also be a lot of work, but again I enjoy it. I have physical therapy on Thursday this week. The clinic I go to is pretty booked for the next couple of months, and I had to rearrange my schedule there a bit. I’ll continually post updates here each week, so thank you all for reading and being a part of this community. Hope you all have a great week.

    kevin-schaefer replied 5 years, 6 months ago 3 Members · 4 Replies
  • 4 Replies
  • michael-morale

    December 3, 2018 at 8:22 am

    That’s exciting news to hear about your recent tests and how well you did on them. Like you, I too was somewhat skeptical when starting my Spinraza treatments, but given the amount of strength that I gained in my core and even some of the strength that I gained in my arms, I’m very thankful that I decided to go through these treatments. Hearing about your test results should be exciting news to anyone, whether they’re on these treatments are not.

    I’ve always said that I tend to notice the little changes more than others, because for an able-bodied person, small changes are so insignificant, that they probably don’t even notice them. I, do notice the smaller changes because for those of us with SMA, our small changes seem to be more significant.

    Congrats again on your test results and keep your head up my friend, I have a feeling that the party is just beginning.

    • kevin-schaefer

      December 3, 2018 at 10:37 am

      Thanks! Yeah it’s really exciting to see.

  • deann-r

    December 3, 2018 at 12:40 pm

    It seems like this is always a busy time of year in general.  With appointments I can never figure out why they can be so tiring when the majority of the time is spent waiting for them.  Anyway, glad everything went well.

    • kevin-schaefer

      December 3, 2018 at 12:56 pm

      Right you are. I do like getting them all out of the way at once however. My physical appointment last Wednesday didn’t take too long fortunately, as the people at that office are really efficient. Most of the waiting time took place on Friday, which is to be expected. At the MDA clinic I see multiple specialists, and it’s always busy. It wears me out, but at the same time I like going there and being able to see the majority of my healthcare team at once.

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