Monthly Journal - November (2020)

Monday, Nov. 23, Through Sunday, Nov. 29 - You would think that having vacation time away from work would be relaxing, but I'm the kind of person who feels like this time away from work is more like a punishment than it is a vacation. I've never really taken a full week away from my job, so after the first couple of days, I was itching to go back to work. I miss my coworkers, and I miss being busy. Not to say some time off hasn't been productive and relaxing, but I would rather be busy doing something, versus sitting at home binge watching Netflix.

When I went for my workout this week, Alex's PT student, Kelechy, worked with me on my core strengthening exercises, and he also did some deep tissue massage on the supinator muscle in my right arm. This muscle had been spasming quite a bit, so getting this muscle massaged, relieves some of the issues that I was experiencing. Alex and I spoke about doing some dry needling, and she said that since this muscle seems to be so bound up, she thought that this might be a technique we could try. When I go back in for my workout next week, we may try this to see if it helps with the spasming. I'm not excited about having needles stuck in my arm, but if it relieves some of the spasming that's happening, I'll gladly try it.

Next week's video will cover a topic that a few of you had sent me questions about. Most of us with SMA will spend time in hospitals, and my video discusses some of the things to think about if you know that you're going to go to the hospital and possibly be admitted. While it doesn't really cover the topic of SMA, it's a subject that all of us need to think about, so that we can be prepared if and when this time comes.

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

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Monday, Nov. 16, Through Sunday, Nov. 22 - Only having to work 3 days this week, and knowing that I have the next 7 business days off as vacation, made this week a very good one for me. While I thoroughly enjoy my job with BioNews, it's nice to have some time saved for the end of the year, and that's usually when I take the majority of my vacation days.

When I went for my workout this week, Alex's PT student, Kelechy, transferred me from my wheelchair to the therapy table. Since my hips has been giving me a little bit of discomfort, we decided to forgo the balance exercises and move directly into the stretching and range of motion exercises. I wanted to spend as much time stretching my hip muscles as possible, so that it might alleviate some of the discomfort that I've been going through. With Emily being out on maternity leave, I'm now working exclusively with Alex and her PT student, and since Emily will be out until the middle part of January, they've asked Kelechy to work an additional 6 weeks to cover for Emily. He's actually been very good to work with, along with Emily's PT student, so it's nice to know that he'll be there while Emily is out. After going through all of my stretching and range of motion exercises, they also worked on my hip flexors, and this made my right hip feel much better during the week.

In this week's video, I discussed the importance of finding a pulmonologist in your area, along with being vigilant and having your pulmonologist run pulmonary function tests [PFTs] on a regular basis. These PFTs are important, because they show you not only the volume of air that you're able to inhale, but the force in which you are able to exhale this air out of your lungs. This is probably one of the most important doctors an SMA patient can have, so that's the reason why I decided to do this video. Press HERE to view my video.

I hope that all of you had a great 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 in a couple weeks.

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Monday, Nov. 09, Through Sunday, Nov. 15 - What a wild and crazy week this has been. From getting bit by a spider, to losing my physical therapist for the next 6 to 8 weeks, along with everything going on with my job, I can say without a shadow of a doubt that this has been one of those weeks for the record books.

When my caregiver came into my room Wednesday morning to help me get dressed and in my wheelchair, he stared at my right arm with an inquisitive look on his face. I asked him what he was looking at, and he told me to look down to my right arm. My right forearm was extremely red, and it was then that I noticed that I had 2 puncture marks on my arm. Apparently, during the night, a spider decided to make me his late-night snack, and my entire forum from my elbow to my wrist was red and inflamed. It didn't necessarily hurt, but it began itching. I called my doctor, and she recommended some hydrocortisone cream, and told me to keep an eye on it and to let her know if I started noticing any skin damage. I live in an area where we have quite a few wolf spiders, and while they look vicious, they're not necessarily anything that would be considered life-threatening. The hydrocortisone cream is helping with the redness, but it still itches something fierce. I also found out that there are quite a few people that switched from Spinraza to Evrysdi, that have also noticed some rashes on their bodies. I would be willing to bet that this is caused from a spider bite, only because of the 2 puncture marks on my arm, but I'm also watching out for any rashes that may appear, which may be caused by my new Evrysdi treatments.

When I went for my workout this week, I found out that my physical therapist, Emily, is having to stay home now due to her pregnancy. She's due to give birth to her son any time now, so I probably will not see her until she returns. I know that I'm in good hands with Alex, but I'm hoping and praying that Emily has a successful birth, and that her baby boy will be healthy.

I'm working on my next video which will be out next Sunday, and I'm going to be talking about the importance of finding a good pulmonologist. Back in 2018, I came down with a severe case of pneumonia, and while I had intentions of getting a pulmonologist before this happened, I waited too long, and this mistake nearly cost me my life. My video will go over the importance of getting a good pulmonologist, and going through pulmonary function tests, [PFTs], on a yearly basis, and how important these PFTs are in determining your health and how you can improve your breathing strength. The majority of patients with SMA have decreased or diminished lung functions, and having a good pulmonologist, and going to see them on a regular basis, whether it be once every year, or even twice per year, can help those of us with SMA live a better and more productive life.

I hope that all of you have 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.

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Monday, Nov. 02, Through Sunday, Nov. 08 - One word pretty much describes my entire week. CRAZY!! This was my first full week on Evrysdi, and I almost forgot to take it 2 times. You're supposed to take it every day after a meal, around the same time each day. You would think that I wouldn't forget to take it, but twice this week, after lunch, I went back into my home office, and realized about 20 minutes later, that I never took my Evrysdi. New habits are hard for me, so I know I have to be more mindful and remember. My work schedule has been extremely busy, trying to finish out 2020, and prepare for what's coming up in 2021.

My subscribers and followers will notice a difference in my video thumbnails. I'm trying a new program called Thumbnail Blaster, and I'm hoping to get more views to my videos based on better thumbnails. They say it will work, so only time will tell. If you like my new video thumbnails, shoot me an email and let me know.

When I went for my workout this week, they transferred me from my wheelchair to the therapy table, and we worked on balance and range of motion exercises. The supinator muscles in my right arm at the spasming quite a bit, so Emily did some deep tissue massage on these muscles, and I can really tell a difference throughout the week. He was getting so bad, it was making it difficult for me to control my mouse on my computer. I would click on something just to highlight it, and I would end up dragging it from one computer monitor to the other. This definitely causes problems, especially when you are trying to highlight multiple files at the same time. Hopefully, these speak to massage his that Emily is doing will help to eliminate some of the spasms. Emily is just about ready to give birth to her first child, so I probably will not be working out with her until after she returns from maternity leave. The new director, Alex, will be working with me, along with some of her PT students. I'll enjoy working with Alex, but will also be excited when Emily returns. I know Alex will be excited when Emily returns as well, because the time that she's gone, will be hectic for Alex.

In this week's video, I discussed the recent announcement by Scholar Rock, regarding the positive proof of concept data from your TOPAZ phase 2 trial's interim analysis of SRK-015 in patients with Type 2 and Type 3 spinal muscular atroph. This report shows the positive outcomes that Scholar Rock received, and should also raise the level of excitement for all of us within the SMA community. Click HERE to view my video.

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 in a few weeks.