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The Morale Monologue
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Why You Should Talk to Your Doctors About Pressure Sores and Ulcers
In this episode of the Morale Monologue, I discuss pressure sores and pressure ulcers for those of us that sit in wheelchairs for the majority of our days. While I’ve had different pressure sores throughout my life, the one that I just experienced put me in the hospital for 4 days, so I wanted to share my experience with you in hopes that you can talk to your doctors and try to avoid what I went through.
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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 -
Transferring To A New Physical Therapy Clinic
In this episode of the Morale Monologue, Michael Morale gives an update with regards to his physical therapy. Recently, his physical therapy assistant, Emily, accepted a new position at an outpatient physical therapy clinic in Fort Worth Texas. Michael discussed his decision to transfer to her new clinic so that he could continue working with her, and he gives you his reasons why he made this decision.
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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 -
Pros And Cons of SMA Treatments
In this episode of the Morale Monologue, Michael Morale discusses the pros and cons of SMA treatments. Michael shares his feelings with regards to his journey regarding these treatments, and shares his perspective with you with regards to where we’ve been and where we’re going regarding our treatments.
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SMA News Today Article Written By Brianna Albers: https://smanewstoday.com/columns/2021/08/02/life-sma-full-contradictions/
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To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
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For the most up-to-date information regarding SMA, please visit www.smanewstoday.com -
Apitegromab Awarded FAST TRACK Status By The FDA
In this episode of the Morale Monologue, Michael Morale discusses the FDA’s decision to award fast-track status to Scholar Rock’s potential treatment, apitegromab. Once Scholar Rock files the paperwork for FDA approval of apitegromab, this fast-track status will shorten the time that it takes for the FDA to make a decision. As more information becomes available, Michael will continue to update the channel. Be sure to read the article that was written by SMA News Today, and also share this information with your doctors.
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SMA News Today Article: https://smanewstoday.com/news-posts/2021/05/26/muscle-directed-therapy-apitegromab-put-on-fda-fast-track/
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To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
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For the most up-to-date information regarding SMA, please visit www.smanewstoday.com -
Answering Your Questions about SMA
In this episode of the Morale Monologue, Michael Morale answers 5 questions that were posted under some recent YouTube videos that were published on the SMA News Today YouTube channel, along with some questions that were posted on his personal YouTube channel, SMAJOURNEY51.
Do you have any other questions you would like to get answered? Let us know about it! Comment 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
Dose of DeAnn
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Are SMA Treatments Effective?
Hey everyone! Welcome to another video from Dose of DeAnn!
Last week on our SMA forums (https://smanewstoday.com/forums/), I asked where you were at in your SMA treatment journey. I got a lot of responses and the answers varied between those who have been on treatment for a while and those just starting out.
One question it brought up for me is the effectiveness of the treatments.
In this video I talk about some of the factors I believe play into how effective the treatments seem. Keep in mind the treatments aim to halt or slow the progression, not reverse the damage already done. I also talk about my feelings regarding if treatment is worth it. Since football season is upon us, I use a football analogy to get my point across.
What are your thoughts regarding treatment? Do you feel they are effective? I would love to hear about it!
Comment below or head to the forums at https://smanewstoday.com/forums/ for an in depth discussion.
Treatment Options Video:
https://youtu.be/C4o5ro33lXI -
Jaco Robotic Arm Reveal
Hey everyone! I'm excited for this one. Although it took a lot of effort everything has come together and I finally have my Jaco Robotic Arm! In this video not only do I show you what the installation process is like, I also show you what I can do with it.
You’ll be able to see the moment it arrived at my doorstep (figuratively speaking of course because obviously I don’t have steps,) to the moment I wake it up out of its slumber. If you recall from a previous video I struggled with certain tasks. Those were the first things I tackled with the new arm and I show you in real time how it goes. I look forward to including the Jaco in upcoming videos.
Do you have any questions? What would you like to see?
You can leave a comment below the video or head to the forums at https://smanewstoday.com/forums/ to add to the discussion. Join us and let’s get talking! -
31 Days of SMA: A chat with Alyssa Silva
Hey everyone! Since we are well into SMA Awareness Month, I had a chat with SMA columnist Alyssa Silva to go over some of the stories shared via the #31DaysOfSMA initiative. In this video we share our thoughts, and talk about all things surrounding life with SMA.
Have you been following the 31 Days of SMA campaign? Which stories do you relate to the most?
Do check out all the featured stories until now at https://bit.ly/31-Days-of-SMA-2021.
And don’t forget we have open discussions on our forums at https://smanewstoday.com/forums/ as well. Join us and let’s get talking! -
SMA Awareness Month and Exciting News On Jaco Robotic Arm Quest!
Hey everyone!
Today I just wanted to pop on with a couple of updates. We are well into SMA Awareness Month, so I wanted to remind you to check out all the fabulous stories at https://bit.ly/31-Days-of-SMA-2021.
I also have exciting news regarding my quest for the Jaco Robotic Arm. It’s been approved! My persistence has finally paid off and I’m looking forward to installation day!
Do you own a Jaco Robotic Arm? Have you been through a similar situation like I did? I would love to hear about it! And if you have any questions regarding the process I went through, please don’t hesitate to ask.
Don't forget that we have open discussions on our forums at https://smanewstoday.com/forums/ as well. Join us! -
Trying New Activities: Picking Honeyberries & Flying a Mavic Mini Drone
Hello everyone! I'm always up for trying something new. If I've tried it before and found it challenging I'm always looking for an easier way to do it. In this video I show you two activities I recently gave a whirl.
One was a new activity and one I've done before. Picking honeyberries was a spur of the moment thing I wasn't sure about, but it worked out in the end. Flying a drone was something I've done before but found challenging. After upgrading my drone I decided to give it another shot. I'm glad I did because it's been a lot of fun.
Have you tried anything new lately? Was it challenging or was it a success? I'd love to hear about your adventures.
Let me know your thoughts over on the forums at http://smanewstoday.com/forums
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?
