Monday, Dec. 28, Though Sunday, Jan. 02 - My last week of vacation, and bidding a fond farewell to 2020 was the highlight of my week. When I tried to go to physical therapy on Tuesday, my van wouldn’t start. Being that that was the only thing that went wrong during the week, I should count my blessings.
I was excited about going to physical therapy this week, because Alex was going to do some dry needling on the supinator muscle in my right arm. This dry needling technique relaxes the muscle, and I’ve never had it done before, so I was looking forward to seeing if it would work. Going out to the garage and finding out that my van wouldn’t start, was definitely a bummer, and it took me nearly 4 hours to get in touch with AAA [Tripple A], and even though Alex could’ve seen me later in the day, it was nearly 7 o’clock in the evening before they were able to change the battery out and get my van running. Trust me, from now on, I’m going to make sure that we start my van early in the morning on the days that I go for my physical therapy, so if there is a problem, I’ll have time to get it fixed before my scheduled therapy session. This upcoming week, I look forward to doing this dry needling technique with Alex, and will let you know how it turns out. [Look for upcoming pictures of this on my website next week.]
This week’s video, deals with a topic that I’ve been wanting to talk about for a long time. I’ve been alive for over 55 years, and while I know this problem isn’t exclusively mine, it’s still something that’s been plaguing me for many years. You would think that those of us with SMA have a good understanding as to what a progressive disease is, and how progressive diseases function on the body. We know that Spinraza and Evrysdi are treatments, but we also know that they are not cures. Both of them are designed to either stop the progression, or slow the progression, and while we fully understand how these treatments work, there are those in our lives that think that they know better than us, as to what’s best for us, and what we should do. I was recently told by someone that I know, that I needed to switch from Evrysdi back to Spinraza, because of the gastrointestinal issues that I’ve been having. This person looked at me and told me that they’ve noticed over the past 6 or 8 years, that I’m getting worse, and apparently none of these treatments are doing me any good. What was surprising about this statement, was that it came from someone who is perfectly able-bodied. I guess they thought that I was going to be surprised and shocked with this revelation that just came out of their mouth, and while I bit my lip and didn’t say anything, I started thinking that maybe, just maybe, I should have told this person that they needed to mind their own business. While I’ve never been one for confrontation, there comes a time that all of us need to at least stand up for ourselves and let people know that their unwarranted and un-wanted advice is really not needed. The bad part, is that if we don’t do this, they’ll continue to give us their opinions, is if we should not listen to our own bodies and our own doctors. I’m sure that most of you have dealt with the same situations in your life, but I felt it was important enough to do a video. Click HERE to view my video.
Now that 2020 is behind us, my hopes and prayers are the 2021 will bring a greater sense of normalcy back into our lives. Yes, we are still social distancing, and yes, we are still wearing masks, but hopefully, things will start to settle down, and we can take off our masks and see each other smile. I hope that all of you had a fantastic week, and I hope that you will do something this upcoming week that will make you a better person. God bless you, and I’ll see you in a couple weeks.
Monday, Dec. 21, Through Sunday, Dec. 27 - Have you ever tried to remember every website that you had bookmarked, and every login ID and password that you used? This is what I faced this past week. While it’s been a frustrating process, I’m finding that I had many websites and login IDs that I never used anymore, so it forced me to do a thorough cleaning of some of my files. While I never want to go through this again, it’s at least taught me that I need to be more diligent in keeping my files in order.
When I went for my physical therapy this past week, my physical therapist, Alex, and her student, Kaleche, along with the new DPT, Isaac, worked on my stretching and range of motion exercises. It had been nearly 3 weeks since I'd been stretched, so I can tell you from first-hand experience, getting stretched out felt really good. We didn’t work on any of my balance exercises, because we wanted to focus on my stretching and range of motion, but we will resume my balance exercises when I transfer back to therapy table in two weeks. After stretching me out, Alex did some deep tissue massage on the muscle in my arm that had been twitching. She told me that this muscle is extremely bound up, so she said next week when I come in, she was going to do the dry needling. This procedure is similar to acupuncture, and these needles will help relax the muscle, which may help with some of the spasms. Alex asked me if needles bothered me, and I told her that throughout my life, I had been pricked more times that a pincushion, so needles don’t bother me. Hopefully, this will work.
In next week’s video, I’m going to be doing something completely different from my other videos. I don’t know about you, but every once in a while, I get people telling me that my condition is not getting any better, and when they do this, they give their advice on what I should do. They think that by telling me that I’m getting worse, that for some magical or mystical reason, I’m going to get better, based on their opinions. In reality, these people really need to keep their mouth shut and quit acting like they know everything. This has been happening to me for quite some time, and I’m going to tell you how I handled it, and hopefully if you’re going through the same thing that I am, you can address this issue with those that are giving you their unwarranted opinions. Yes, you may hurt some feelings, but at least they’ll know where you stand with regards to receiving this unneeded advice.
I hope that all of you are having a fantastic day, and I ask that you do something for yourself this upcoming week, it will make you a better person. God bless you, and I’ll see you next week.
Monday, Dec. 07, Through Sunday, Dec. 20 - On Friday, December 18, everything was going perfectly until 3:30 PM. It was at this time, my Solid-State Drive [SSD] decided that it was time to stop working. While it’s rare that these particular drives fail, given my luck, I knew that it was only a matter time before something would happen. When this drive failed, it took all of my bookmarks, login IDs and passwords, and completely eradicated them. Let’s just say that the past five days have been nothing but sheer hell. Slowly but surely, I’m getting everything back to normal, but having to download all my programs, and remember all of my login IDs and passwords have been completely mindnumbing. I wouldn’t wish this on my worst enemy.
I haven’t been able to go to physical therapy for the past two weeks, because all three of my caregivers came down with Covid. While I never got sick, the responsible thing for me to do was to isolate myself for 14 days, because I wouldn’t want to accidentally infect someone if I was carrying the virus. While I normally update my website on either Saturday or Sunday, I’m doing it today, because this is the first time that I’ve been able to log in for the past five days. I am going to go to physical therapy today, which I’m thoroughly excited about. Missing the last two weeks, it’s really caused my hips to tighten up, and I really need to be stretched. I know it’s going to be uncomfortable, but the little amount of discomfort that all go through will be well worth it. Another thing that is been plaguing me is the muscle in my right arm. He keeps twitching uncontrollably, so some deep tissue massage will definitely take care of this.
In this week's video, I discuss how some SMA patients may experience gastrointestinal issues while on an FDA approved treatment for SMA. Since switching from Spinraza to Evrysdi, I’ve experienced some gastrointestinal issues, and these concerns may impact others who were thinking of doing the same thing that I did. I give you my advice on how to handle this issue, and how to talk to your doctors. Everyone adjusts differently to different treatments, and this is something that all of us need to know about so that we can consult with our doctors to make sure that we are doing everything that we can to either eliminate this concern, or to address it so that it can be minimized if it happens. Click HERE to view my video.
I’m hoping that all of you have had a fantastic week, and I ask that this week, you do something for yourself that will make you a better person. Thank you for your patience, God bless you, and I’ll see you in a couple weeks.
Monday, Nov. 30, Through Sunday, Dec. 06 - What started out as a great week turned into a miserable flop on Wednesday. All 3 of my live-in caregivers have contracted COVID. While they've all been sick, it's just been flu like symptoms, and luckily nothing serious. I still have my smell and taste, and I feel fine, so I'm hoping to stay far enough away from them over the next couple weeks. As difficult as this may seem, it's been 4 days and I feel fine so far. The only downside to this, is that it will be another 3 weeks before I can go to physical therapy, because I have to self isolate for 14 days without symptoms.
When I went for my workout this week, Alex worked with me on my core strengthening exercises, and her new PT, Isaac, watched and learned this exercise routine. Isaac just graduated with his doctorate of physical therapy [DPT], and he'll be working with me every once in a while, when I'm not working with Alex or Emily. Emily gave birth to her son, and both mother and child are doing well. Hopefully, she'll be back during the middle part of January. I was looking forward to going to work out next week, because they were going to transfer me to the therapy table, but it looks like it may be another 3 weeks before I get to do this.
In this week's video, I discuss one of the positives that came from the COVID-19 pandemic. All of us are aware of the negatives that came from this pandemic, but with any negative life events, we can all take a positive out of it, and one of these positives that came from this pandemic was the use of telemedicine conference calls with our doctors. I give you the reasons why I think these telemedicine conference calls have been beneficial to those of us with SMA, and I hope that this is something that you are using to keep in contact with your doctors during this time of isolation. Click 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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In this week’s video, I discuss the REALITY of what Spinraza and Evrysdi ACTUALLY do for those of us with SMA.
I discuss my thoughts regarding these treatments, and I also discussed how hopeful we should all be with regards to Scholar Rock’s new treatment known as apitegromab.
This potential treatment will be the first of its kind because it will be a muscle targeted therapy, that will be used in combination with Spinraza, and other possible treatments.
Be sure to read Emily's latest article: