Monthly Journal - January (2021)

Monday, Jan. 11, Through Sunday, Jan. 17 - If I told you the kind of week that I had, you probably wouldn’t believe me. I had just finished my 2021 Business Plan for the division that I’m responsible for, and the excitement of knowing that I would soon be sitting in my new wheelchair was starting to build. They weren’t able to do many adjustments on my chair when they brought it out to me on Thursday, December 31. They had me on their books to come back to my house and finish the adjustments the next week, but the rep there was supposed to do these adjustments had been scheduled to attend an ALS conference that he didn’t even know about. So, they rescheduled me for this past Friday, January 15. The day before they were supposed to come out, I received a message telling me that for some unforeseen reason, they would have to reschedule again. This is when my week started to decline, and I’ll explain further in just a moment.

One of the good things that happened to me this week was when I went back to physical therapy, and my physical therapist, Emily, returned from maternity leave. I hadn’t seen her in nearly 2 months, so it was nice to finally be able to work with her again, along with Alex, who had been working with me while Emily was out. I’m lucky that I have to fantastic physical therapists, so it was nice to be able to get out of my wheelchair and onto the therapy table to get stretched out. While performing my range of motion exercises on my right leg, Emily held my right foot up in the air and asked me what happened. I knew exactly where she was going with this conversation, but I acted all innocent and said what do you mean? It didn’t take her long to put on her “mom”, and she told me to look at my foot and ankle. She said that this was the worst that she had ever seen it with regards to the swelling. She asked me if I’d been wearing my compression stockings while she was out, and I had no excuses. I told her no, and it looks could’ve killed, I would be 6 feet underground right now. I’ll have to admit that the ass chewing that I got was well-deserved. That’s one thing that I like about Emily, is that she doesn’t hold back, and she doesn’t pull any punches. To be honest with you, Alex is the same way, so I have a bad feeling that I’m never going to be able to get away with anything. [Probably rightfully so.] We didn’t do any balance exercises, because it had been over 3 weeks since I’ve been on the physical therapy table, so Emily told me that we would work doubly hard on my balance the next time if they transferred me. Next Tuesday, January 19, Alex will perform some dry needling on the supinator muscle on my right arm. The supinator muscle runs from your bicep down to your wrist, and this is the muscle that keeps twitching in spasming. While deep tissue massage has helped, it only helps for a few hours. Since this muscle continues to twitch and spasm, both Emily and Alex agreed that dry needling may help to relieve some of these problems. While I don’t necessarily look forward to having needles shoved in my arm, I’m at the point to where I’ll try anything.

Now, getting back to my new wheelchair. After being delayed another week, I was told by the rep that the only time that he could meet this coming week would be on Tuesday. I told him that I would trying to rearrange my physical therapy schedule, because Tuesday’s are the days that I go in for my PT. I started thinking about how many times I have been delayed by the company that sold me my new wheelchair, and I finally came to the conclusion that they are the ones that are going to have to work around my schedule, instead of me working around their schedule. I could’ve easily asked Emily and Alex if I could come in on a different day, but this wouldn’t have been fair for me to ask them to work around someone else’s schedule. I wrote the rep message back via email, and I told him that we would have to plan on meeting in 2 weeks, because I was not able to rearrange my PT schedule. It’s about time others start working around my schedule and quit asking me to always accommodate them.

In this week’s video, I discuss a question that’s been floating around the SMA community for over a month. Many of you have asked the question regarding whether or not patients with SMA should take the COVID-19 vaccine. In my video, I review an article that was recently published by SMA News Today, and this article goes into great detail regarding the vaccine and the rollout schedule that was developed by the Centers for Disease Control. Click HERE to view my video.

I hope that all of you had a fantastic week, and I want that you, your family members and your friends are staying safe and healthy. Please do something for yourself this upcoming week it’s going to make you a better person. God bless you, and I’ll see you in a couple weeks.

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Monday, Jan. 03, Through Sunday, Jan. 10 - While I was excited to go back to work, after being on vacation for nearly 3 weeks, I wasn't necessarily surprised to be hit with an exorbitant amount of work to catch up on. I'm one of the senior directors of BioNews, the company that I work for. All of us have been working on our business proposals for 2021, and after weeks and weeks of work, I finally have mine finished and ready to be submitted. Take a look at the graphic on the side of my journal entry. This is about what I looked like after getting it completed.

I finally got to go back to physical therapy last week, but we really didn't do too much, other than my reevaluation. My normal physical therapist, Emily, will be returning this next week from maternity leave, but Alex has been doing a great job with me. After my reevaluation, she did some deep tissue massage on the supinator muscle in my right arm, because that muscle has been twitching quite a bit lately. We were going to do some dry needling, but since we didn't have enough time, we're planning on doing that in the coming weeks. When I go back for my workout on Tuesday, Emily and the new DPT, Isaac, will transfer me from my wheelchair to the therapy table. I'm looking forward to getting stretched out, because my right hip flexor is getting pretty sore.

My next video will deal with the COVID-19 vaccine. There's been quite a bit of discussion within the SMA community as to whether or not those of us with SMA should take this vaccine. I give you my opinions on what I'm planning on doing, and make some suggestions that I hope that you'll find useful.

I hope that all of you had a fantastic week, and I ask that you do something for yourself this upcoming week, that will make you a better person. God bless you, and I'll see you next week.