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The Morale Monologue
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Exciting News Regarding Biogen and Spinraza
In this episode of the Morale Monologue, I discuss Biogen Pharmaceutical’s DEVOTE clinical trial. The FDA recently gave Biogen approval to resume this trial, and the purpose of this study is to see if higher dosing amounts in Spinraza would benefit those of us that are on this treatment.
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SMA News Today Article:
https://smanewstoday.com/news-posts/2021/01/06/higher-dose-spinraza-trial-now-enrolling-part-b-after-no-safety-issues-found-in-part-a/
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To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
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For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com -
Should SMA Patients Take The COVID 19 Vaccine?
In this episode of the Morale Monologue, I discuss a question that’s been floating around the SMA community for over a month. Many of you have asked the question regarding whether or not patients with SMA should take the COVID-19 vaccine. In my video, I review an article that was recently published by SMA News Today, and this article goes into great detail regarding the vaccine and the rollout schedule that was developed by the Centers for Disease Control.
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SMA News Today Article:
https://smanewstoday.com/news-posts/2020/12/04/mda-wants-neuromuscular-disease-patients-to-have-early-access-to-covid-19-vaccine/
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To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
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For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com -
GI Concerns Regarding Evrysdi Speak To Your Doctor
In this episode of the Morale Monologue, I discuss some G.I. issues, [gastrointestinal], that I’ve experienced since switching from Spinraza to Evrysdi. Any time that you switch from one treatment to the other, or you change from one medication to a different medication, your body can go through some changes. One of the changes that I experienced were loose bowels, and while this may not be the best of topics to discuss, it’s an issue that you may face.
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To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
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For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com -
What To Do When Going To The Hospital
In this episode of the Morale Monologue, I discuss what you need to do if you know that you’re going to the hospital. The majority of us with SMA have spent countless days and weeks in the hospital, and while it’s inevitable that this will probably never change, we need to be prepared when the time comes. My video will give you some tips and tricks on what to do, along with things to take with you that will make your stay in the hospital more comfortable.
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To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
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For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com -
The Importance of Pulmonary Function Tests For SMA Patients
In this episode of the Morale Monologue, I discuss 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 yearly basis. These PFTs are important, because they show you not only the volume of air that you’re able to inhale, but the forest in which you are able to exhale this air out of your lungs. Most people with SMA have diminished lung capacities, and being able to break up the mucus and phlegm that builds up in the lower lobes of the lungs is important for your overall health. These PFTs can help your doctor determine the best course of action, so that you can improve your lungs strength and lung volume.
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Article regarding FVC and FEV1: https://lunginstitute.com/blog/fev1-and-fvc/
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To learn more about Evrysdi, please visit https://www.ApprovedForSMA.com
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To take part in our ongoing discussions regarding SMA, please visit https://www.smanewstoday.com/forums
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For the most up-to-date information regarding SMA, please visit https://www.smanewstoday.com
Dose of DeAnn
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I’ve Gotten The COVID-19 Vaccine
As vaccinations roll out throughout the country it can be disheartening when you’re not among the eligible recipients. Yet again it seems like there’s a whole sector of the population being overlooked. Unfortunately I don’t know how to change this, however I did figure out how to work within the limited scope to get my vaccine. In this video I talk about why I got vaccinated as well as how I qualified to get one and what it was like.
When you can’t change the process sometimes you have to look for loopholes, and that’s just what I did. Have you been able to get a vaccine?
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To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
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For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com -
Disability Discussion with Dan and Viola, The Ginchiest
Rare Disease Day is a day meant to bring awareness to rare diseases and conditions. I had the opportunity to talk with Dan and Viola about the topic of disability.
They have their own YouTube channel, The Ginchiest. Their philosophy to keep it kind, be cool and be your best self is a great message. We talk about disability, relationships and life during a pandemic.
Be sure to check out their YouTube channel: https://www.youtube.com/channel/UCpfCvA6JvBdMCM6iREgdqKw
And don't forget to register to our SMA News Today forums:
https://smanewstoday.com/forums/ -
Venturing Out of Hibernation
In efforts to remain healthy many of us, especially those of us at high risk, have been homebound for the last year or so. Needless to say it’s getting old. I prefer the term hibernation. It implies a time when winter ends and we can slowly rejoin the world. In this video I decided to venture out of hibernation for the first time in a while. It wasn’t an easy decision considering the fact we’re still amidst a global pandemic. Not only do I talk about what factored into my decision, I let you know the precautions I took and my feelings on going out. Something that brings me joy are plants, so I thought going to a greenhouse would be a great first outing. As a bonus I give you a useful plant care tip. Here’s a hint, it recycles a common household medical supply.
You’ll have to watch the video to find out what it is.
My home is my sanctuary and this adventure was a way for me to enhance my space to make it even more enjoyable while I spend the majority of my time there. The need for hibernation varies from person to person. I encourage you to do what makes you happy at your comfort level. If you’re not ready to venture out I still encourage you to make your space a place where you can find enjoyment.
Figure out what makes you happy and surround yourself with that. Have you ventured out yet? Was it enjoyable or stressful? I'd love to hear from you! Let me know in the comment section below! -
Disability Life Hack Drawer Pull
Hey everyone! As I’ve mentioned before I get some of my best ideas from my fellow SMAers. Today I’m sharing a hack I learned about from social media. After adding my own twist I wanted to share it here. I took a ring popsocket and braided paracord to make my own drawer pulls. Bonus, my service dog’s favorite command is tug, so he makes an appearance as well.
What do you use to help open drawers? Any other hacks I should know about? Let us know about it in the comment section below!
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To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
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For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com -
SMA Treatment Options Overview
Hey everyone! It’s amazing to think of how far we’ve come in regards to treatments for SMA within the past few years. In this video I thought I’d give you an overview of the available treatments from my perspective. Currently three are FDA approved including Spinraza, Zolgensma and Evrysdi. I’ll let you know how they work and compare costs. Knowing your options is important when you’re considering starting or switching treatments. If you have any questions please ask. I’m not a medical professional, but will do my best to answer them.
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To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
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For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com
Ryan’s Robotics
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Opening Doors Using The Jaco Robotic Arm
Check out Ryan's latest video here. In this episode of Ryan’s Robotics, Ryan demonstrates how he uses his JACO robotic arm to open doors in his house. This is another example of how this device increases Ryan's independence. Hope you all enjoy!
Do you have any questions about the JACO arm or other assistive technologies?
Visit http://www.smanewstoday.com to learn more about spinal muscular atrophy. -
Mounting a Cell Phone to a Jaco Robotic Arm
In this episode of “Ryan’s Robotics”, Ryan demonstrates how he mounted his cell phone to his Jaco Robotic arm. While there are numerous mounts that people can purchase online, Ryan’s suggestions are more cost-efficient and adaptable. Check it out here!
Do you have any questions about the JACO arm? -
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?