Monthly Journal - August (2019)

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Monday, August 12, Through Sunday, August 18 - This has been a crazy week to say the least. A week ago, I was experiencing quite a bit of weakness in my right arm, and this weakness persisted for quite some time. Luckily, on Monday, August 12, my right arm started to recover, and my strength level slowly improved throughout the week. I'm not sure why I experienced this weakness, but I guess it's something that those of us with SMA just have to deal with from time to time. My caregivers are getting ready to go on vacation next week, so I met with the lady that's going to be staying with me while my caregivers are gone, and my work with BioNews Services is keeping me extremely busy.


When I went for my workout with Emily on Tuesday, Emily had 2 physical therapy students with her. One of the students was hers, and the other physical therapy student was Laura's. Laura will be returning next week from her maternity leave, so her physical therapy student worked with Laura along with Laura's physical therapy student. We went through all of my core strengthening exercises, and the physical therapy students got to perform all of these exercises with me. It's actually nice to work out with physical therapy students because I get to explain what SMA is, and why I'm taking physical therapy. After explaining what SMA was, and after they did my workout with me, they both seemed extremely comfortable with working with someone with SMA. While Laura's physical therapy student will be working with her next week, Emily's physical therapy student will be working with me, and Emily will be observing. Next week, Emily, Vikki and Emily's PT student will transfer me from my wheelchair to the therapy table and we will do all of my balance exercises, along with my range of motion exercises on my legs, hips, knees, ankles and feet.


Emily's next article for the SMA News Today HCP website will be published on Monday, August 26. After this article is published, I will provide a link in my journal entry. Since Emily is going to be working with the PT student for the next 6 weeks, her next article for September will be about letting physical therapy students work with patients that have SMA.


I added a few pictures to my website. Click HERE to view my pictures.


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 next week.

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Monday, August 5, Through Sunday, August 11 - While I was hoping for an easy week, it ended up being full of activity and not much excitement. I took a day of vacation on Friday, because Thursday was my birthday and I wanted to relax a little bit and try to catch my breath for the upcoming week. Trying to cram 5 days worth of work in the 4 days presented challenges, but I was bound and determined not 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 with Emily on Tuesday, she and Vikki transferred me out of my wheelchair to the therapy table and we worked on all my balance exercises, along with all of my range of motion and flexibility exercises on my legs, hips, knees, ankles and feet. I used to be quite nervous about transferring, but Emily and Vikki have made this process a routine that no longer makes me nervous. They've both mastered the skill of getting me transferred from my chair to the table and then back to my chair an easy and quick process. All of my exercises went well, and other than just a few sore muscles and being tired, everything went as planned. For some reason, I was a little bit tired on Tuesday during my workout, and I have no reason for being as tired as I was. My sleeping pattern is good in my energy level had been fine up until Tuesday, but for some reason, I just felt a little bit week and lethargic. When I went home on Tuesday, and after I finish the rest of my work for BioNews Services, I went to bed early. I was still a little bit week on Wednesday, Thursday and 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. While my legs may not run, my nose would've beaten anybody in the 100 yard dash. While working out with Emily, we finished taking pictures for her next SMA News Today HCP article. Since being diagnosed with severe muscle and nerve damage in my right hip, we've been working on these muscles each and every week during my workout, and Emily's article addresses these issues. Once this article is published, I will provide a link so that anyone reading my journal entry will be able to see this article.


In this week’s video, I answer a question that quite a few of you have asked me in the past, but until now, I felt uncomfortable answering. The question revolves around my reasons why I chose not to be an Ambassador for Biogen Pharmaceuticals. My reasons for not becoming an Ambassador were ones that I had to seriously consider, and I think after listening to my reasons, you’ll fully understand why I made the decision that I made.  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.