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My Weekly Journal – 01/28 Through 02/03
Monday, January 28, Through Sunday, February 3 – If you read my journal entry last week, you know that I’ve been asked to be the guest speaker at UT Southwestern Medical Center either in September or October of this year. I’ll have the honor of speaking in front of all of the physical therapy students that are going after their DPT, or their doctorates of physical therapy, and I will be discussing spinal muscular atrophy and the benefits of physical therapy. This will be the first time that I’ve done public speaking in quite a while, and I’m very excited to get back into this role, because I feel that public speaking is something that I need to do so that I can help spread the message of the benefits that those of us that are taking physical therapy will see while we take our Spinraza treatments. This past week has been extremely busy for me, regarding my job. My energy level and my strength have been phenomenal this week, and while it’s hard to believe, I go back to UT Southwestern Medical Center in one month to receive my next injection.
A few of you sent me emails last week asking why I’m now working out with Emily instead of Laura. Emily and Laura have worked together for quite some time, and Emily has worked out with me a few times in the past. The reason why I’m now doing my workouts with Emily is because Laura and her husband are expecting their first child. Transfering me from my wheelchair to the therapy table and helping me with some of my exercises was getting to be a bit more challenging for Laura, because she didn’t want to overstress or be as physically active because of safety concerns for herself and her child. When I found out that Emily was going to be working with me, I rearranged my schedule so that instead of going to physical therapy on Thursdays, I would be going on Tuesdays. This made it easier for Emily, because, like Laura, she has to spend the entire hour with me while we do my workouts. Tuesdays was also a better day for Emily, so I switched my workouts to better suit her schedule. Laura is off on Tuesdays, but after she has her child, and of course has time to recover, I will be able to work out with either Emily or Laura. Emily is a PTA, which stands for physical therapy assistant. She can do everything that Laura can do, with the exception of the initial evaluation and the final evaluation before patients can be released from physical therapy. Since my physical therapy will be an ongoing activity for the foreseeable future, Emily will be not only working with me on my leg exercises, she will also be helping me with my core strengthening, along with doing my four week reevaluation’s. Emily is a lot of fun to work out with and I look forward to continuing my workouts with her. My prayers are that Laura and her husband will welcome a healthy baby either in July or August. When I went to work out on Tuesday, Emily and I worked on my core strengthening exercises, and next week, she will transfer me from my chair to the therapy table and work on my balance exercises and my range of motion exercises on my legs, knees, ankles and feet.
In this week’s video, I discuss my annual physical therapy assessment that I went through a few weeks ago at UT Southwestern Medical Center in Dallas Texas. Those of us that are on active treatment with Spinraza, have to go through an annual assessment so that our results can show an increase or decrease in strength while we are undergoing our injections. I discuss how my assessment went, along with some other exciting news that I received while going through my assessment. Click HERE to view my video.NOTE: I made an addition to my website that I hope will like. As most of you know, I work for a company by the name of BioNews Services. BioNews is the parent company, and they have multiple forums for rare diseases, and one of my responsibilities as Forums Director for BioNews Services, is to manage these forums. Recently, I received a promotion, and I’m not only their Forums Director, I am also their Multimedia Director. One of my primary responsibilities as their Multimedia Director, is to create all of their flash briefings, and to oversee the creation of their podcasts and YouTube videos. The flash briefings that we produce for the SMA News Today forum, can be listen to on any Amazon Echo device. We also upload these flash briefings to our SoundCloud, Spotify and iTunes channels. I have added links to these flash briefings so that you can listen to them on your computer. We produce three flash briefings every week, on Monday, Wednesday and Friday. Each week, I will be including the links to the three flash briefings that we produce, and I hope that you will take time out of your day to listen to them, because they give great information on news related topics within the SMA community, along with perspective pieces from either myself or my coworker, Kevin Schaefer. Click HERE to listen to these 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 next Sunday. -
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