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The Morale Monologue
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Coronavirus: Tips and Trick For SMA Patients
In this episode of the Morale Monologue, I’m discussing how those of us with SMA can stay safe during the Coronavirus (COVID19) concern. Those of us with SMA already have compromised immune systems in lower lung functions, and we need to be extremely careful over the next couple of months, to ensure not only our health, but the health of those who help us on a day-to-day basis. I give some tips and tricks that I’m using to keep myself, my family and my caregivers safe, and my hopes are that these suggestions will help you to not only remain safe and healthy, but keep those who have contact with you safe and healthy as well.
To join in on discussions regarding the Coronavirus please visit: www.smanewstoday.com/forums
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Scholar Rock and SRK 015 - EXCITING NEW POTENTIAL TREATMENT FOR SMA
In this episode of the Morale Monologue, I’m discussing another biopharmaceutical company by the name of Scholar Rock, and their potential treatment known as SRK-015. I discuss how SRK-015 impacts our body, and how it differs from Spinraza, Zolgensma and risdiplam. While it may be over a year before this potential treatment gets approved by the FDA, it’s still proof that pharmaceutical companies are making advancements toward new treatments for those of us who suffer from spinal muscular atrophy.
- SRK-015 Data Continue to Support Potential for SMA, Scholar Rock Says: https://smanewstoday.com/2020/02/21/srk-015-data-continue-to-support-potential-for-sma-scholar-rock-says/
- Early Data Support SRK-015 Development for SMA Types 2–3, Scholar Rock Says: https://smanewstoday.com/2019/10/09/early-data-support-srk-015-development-for-sma-types-2-3-scholar-rock-says/
- Scholar Rock Announces Additional Preclinical Data Supporting SRK-015 as Potential SMA Treatment: https://smanewstoday.com/2018/11/30/additional-preclinical-data-supports-srk-015-as-potential-sma-treatment/ -
Two Very Important Topics Regarding Risdiplam
In this episode of the Morale Monologue, I’m discussing two very important questions that were asked by my subscribers and followers to my personal YouTube channel. Those of us that are receiving our Spinraza maintenance doses, get these injections every 4 months. Quite a few people have stated that they are experiencing a lethargic feeling as they get closer to the four-month date of their next injection, and I give you my opinions as to why I think risdiplam will be different. The other question that I address is that some people that wanted to begin their Spinraza treatments were unable to do so, due to medical reasons.
Due to their spinal fusions, doctors were unable to find an opening to inject the Spinraza treatment, and I discuss how risdiplam will benefit these individuals, along with everyone else who wants to take risdiplam, once it’s approved by the FDA.
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Risdiplam Questions For Roche Genentech And Our Insurance Companies
In this episode of the Morale Monologue, I’m giving you my opinions to questions that were asked regarding Roche/Genentech’s new potential treatment known as risdiplam. These questions dealt specifically with Roche/Genentech and our insurance companies, and I believe that these are questions that will need to be answered before the FDA gives their final decision as to the approval or denial of risdiplam.
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Are you interested in learning more about spinal muscular atrophy? If so, please login to www.smanewstoday.com
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Great Questions Regarding Risdiplam
In this episode of the Morale Monologue, I’m giving you some more great information regarding Roche/Genentech’s new potential treatment known as risdiplam.
Currently, risdiplam is under Priority Review Status by the FDA, and some of my subscribers and followers to my personal YouTube channel sent me some questions that I thought I would share with you.
These are questions that you can discuss with your family members along with your doctors.
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Dose of DeAnn
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COVID-1 - Should I Worry?
I hope everyone is staying healthy. During this stressful time it’s important not to panic. Despite being nervous about COVID-19 I’m really not changing my actions a whole lot. What some call quarantine I call hibernation and it’s something I practice to avoid the cold & flu anyway. This year my hibernation has been extended. In this video I’ll tell you what other actions I’m taking to be prepared.
MDA has a resource page as well https://www.mda.org/covid19 you can check out.
Have you done anything special to prepare? We’d love to hear your thoughts! -
Making Bug Bite Balm
Spring is right around the corner! Inevitably, with warm weather comes insects. In anticipation, I’m getting prepared for bug bite season by making bug bite balm in this video.
As I was perusing Pinterest, I found a recipe for it. Since I had all of the essential oils, I thought I would give it a try. I’ll have to wait a month or so to actually put the itch relief to the test, but at least it smells good. Here’s the recipe:
-2 oz Beeswax
-4 Tbs Shea Butter
-2 Tbs Coconut oil
-40 drops Tea Tree Oil
-20 drops Lavender Oil
-15 drops Peppermint Oil
-15 drops Lemongrass Oil
In a kettle, bring water to a boil. Add a mason jar. Do not get water inside the jar. In the jar melt 2 oz beeswax. Next add the shea butter & coconut oil. Once melted, remove from heat and quickly stir in oils. Pour into tubes or jars of your choosing.
Have you tried making anything like this? How did it work for you? -
Robotwist Product Review
Always on the lookout for tools to make life easier, I decided to try out the Robotwist product that I’ve heard good things about. It’s a battery operated jar opener. Looking back, I don’t think I’ve ever been able to open a jar. Because of my physical limitations, I was skeptical it would work, but thought it was worth a shot.
Unfortunately, it was a bust. It’s frustrating because I was so close to getting it. Although I’m glad I tried it, it’s definitely not worth the effort, and wouldn’t be as beneficial as I had originally hoped.
Are there any products you love? Any you want me to review? Let me know!
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Exercising When You Have SMA
For this video, I had the opportunity to work with one of our forum members, Crystal. As we all know, SMA has a broad spectrum when it comes to ability. Regardless of your function level, keeping active is important to help maintain the level you’re at. Crystal and I discuss why we think exercise is important, and how we incorporate it into our daily lives.
Do you have an exercise routine? How do you stay active?
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Staying Warm in the Wintertime
Hey everyone! I hope your January is going well.
As usual, the temperatures in Minnesota plummet this time of year. My quest to stay warm prompted this video. When I came across a product that combined the ease of a cape with the comfort of heat and massage I had to try it out. It’s from HoMedics, and you can check out the link here. Of course it’s not perfect, but overall this product gets a thumbs up from me. My video gives you an in-depth look at how it works, and what I think about the features.
Have you tried anything similar? What are some favorite products that keep you warm?
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Ryan’s Robotics
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Becoming More Independent With the JACO Robotic Arm
In this episode of “Ryan’s Robotics,” Ryan demonstrates the three most important functions of his JACO Robotic arm. He demonstrates how this device helps him increase his independence.
Do you have any questions about the JACO arm?
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Cleaning The Jaco Robotic Arm Hand
In this episode of “Ryan’s Robotics”, Ryan demonstrates how he cleans his Jaco robotic arm, and how it’s important to make sure that you perform this maintenance on a routine basis.
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Using the JACO Robotic Arm to Make Coffee
In this video, Ryan demonstrates how he uses his JACO Robotic Arm to make coffee. It's a simple, yet powerful, example of how this device makes Ryan more independent each day.
Hope you all enjoy this video! And just a heads up, myself and the other moderators will be off tomorrow and Friday for the Thanksgiving holiday. Enjoy the rest of the week, and we'll talk to you all soon.
Do you have any questions for Ryan about the JACO arm? -
Using JACO To Put On My Hat and Sunglasses
Check out my latest video here. In this episode of Ryan's Robotics, I show you all how I use my JACO robotic arm to put on my hat and sunglasses. It's a simple task, but it's little things like this that make my life easier.
Do you have any questions about the JACO arm? Are there any particular tasks you would like me to show you in a future video? -
The Dynamic Arm Support
Check out the latest episode of Ryan's Robotics here. I talk about the Dynamic Arm Support, which is another device that Kinova Robotics makes. A Kinova rep spoke with me, and did a full demonstration of this device. It's something that a lot of people here might find useful.
Hope you all enjoy this video! If you haven't already, please subscribe to the SMA News Today YouTube channel. We'd greatly appreciate it.
Do you have any questions about the Kinova arm support?