Monthly Journal - August (2019)

image25

Monday, August 26, Through Sunday, Sept. 1 - Have you ever had one of those weeks where everything seemed to be in the wrong place just because you had to rearrange one meeting or event? My caregivers came back from vacation on Thursday morning, so I had to move my workout with Emily from Tuesday to Thursday afternoon. When Tuesday came, I felt completely lost because I am so used to going to physical therapy, and this one small change in the week through my schedule off completely.


When I went for my workout with Emily on Thursday, it was time to do my 4 week reevaluation. Emily's physical therapy student, Lexi, performed all of the measurements with regards to my range of motion and strength measurements, then, Emily followed up behind her and remeasured to make sure that Lexi got the correct numbers. It's really a lot of fun working with physical therapy students as they learn the different tricks and trades of becoming a physical therapists. One funny thing that happened was that Lexi told me that she had never taken as many measurements on a patient during their reevaluation as she did mine. Emily, Lexi and I began laughing, and I told Lexi that I am the epitome of everything that is wrong. She laughed and patted me on the back and told me that I wasn't, but it still brought a smile to both of their faces. My reevaluation went well, except for the measurements in my ankles. The swelling in my feet was pretty substantial this past week because of my confusing schedule and my change in sleeping patterns. After doing the reevaluation, Lexi and Emily worked on my core strengthening exercises using the resistance bands and isometric exercises that we normally do. Next week, Lexi and Emily will transfer me from my wheelchair to the therapy table and we will do my balance exercises, along with all of my range of motion and flexibility exercises. Emily's next HCP article will be about letting physical therapy students work with patients, and Lexi will be writing a paragraph in the article describing what she has learned by working with me, and what she has learned with regards to working with a patient with spinal muscular atrophy.


Next week, my video will cover a topic that I think all of you should be made aware of. Cure SMA recently hosted a webinar. This webinar detailed some great information regarding updates on Zolgensma. In this video, I go over some of the details regarding when this treatment may become available to those of us that are adults, and I also give my decision as to whether or not I'm going to stay on Spinraza or make the move to Zolgensma.  My decision may surprise the majority of my subscribers and followers, and I thoroughly explain why I make this important decision. This is a video that you will definitely want to watch, and the information that I give you, should be great information to discuss with your families, friends and your medical staff.


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.

========================

Monday, August 19, Through Sunday, August 25 - What a crazy and hectic week. My caregivers that live with me left on Tuesday for their family vacation, and I have a temporary caregiver living with me until they return. Last year, when my caregivers went on vacation, I had a bad experience with the temporary caregivers that I used, and when my caregivers returned from their vacation last year, I was admitted to the hospital 2 days later with pneumonia. Luckily, the caregiver that is with me now is extremely sweet and everything is working out great. Who knows, I may not have to go to the hospital this year. YAY ME!! My work schedule at BioNews Services is keeping me extremely busy, so idle time is not necessarily a problem that I have to deal with.


When I went for my workout with Emily on Tuesday, she and Vikki transferred me from my wheelchair to the therapy table and we did all of my normal stretching and balance exercises. Emily's physical therapy student, Lexi, got to do the majority of my exercises with me. Since Lexi had never transferred me from my wheelchair before, she observed how Emily and Vikki did it this week, and in 2 weeks, when I go back in to work on the therapy table, Lexi will assist Emily in all of the transfers. When we started my balance exercises, Emily was behind me and Lexi stood in front of me. For some reason, I was having quite a bit of difficulty keeping my balance this week, especially when they would pull me backwards. I usually don't have too much difficulty, but this week, it just felt like I wasn't on my game. After Emily finished all of the perturbations, she and Lexi switched positions and Lexi began doing the perturbations. While I thought that Lexi would go easy on me, I was wrong. She worked me out just as hard as Emily did, and by the time we finished all my balance exercises, I was huffing and puffing like an old man that just ran the Boston Marathon. Emily and Vikki then laid me down on my back and we began my stretching exercises on my legs, hips, knees, ankles and feet. Emily did notice that my legs were a lot less tight and rigid this week than they were 2 weeks ago when we worked on the therapy table. She said that 2 weeks ago, my left hip flexor was extremely tight, but this past Tuesday, she said that it felt much better. I guess there is no rhyme or reason as to why one week is better than the other. While I wasn't too thrilled about my balance exercises, I'm still anxious to see how I do week after next when I transfer back to the therapy table. Hopefully things will go better. Emily told me not to worry about it and she said that it would probably be better next time.


I'm also happy to report that Emily's 3rd article for the SMA News Today HCP site was published on the day that I went for my workout. Emily's article deals with lower extremity exercises for people with SMA, and since I have severe muscle and nerve damage in my right hip, the primary focus of this article was how we are doing these exercises. Since both of my physical therapists, Laura and Emily, have produced articles for the SMA News Today HCP website, I thought I would share the links to their articles in case you would like to read them.


Laura's Articles:   https://hcp.smanewstoday.com/author/laura-cifre/ 

Emily's Articles:   https://hcp.smanewstoday.com/author/emily-jones/ 


In this week’s video, I’m sharing the video that I did for my physical therapist, Emily, and it involves the proper and safe way to transfer a patient with SMA. She transfers me from my wheelchair to the therapy table every other week, and this video demonstrates not only keeping the patient safe, but also keeping the therapist safe as well when going through the transfer process.  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 few weeks.

========================

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.

========================

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.