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The Morale Monologue
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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 -
My Experience With Telemedicine (Telehealth)
In this episode of the Morale Monologue, 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 event, we can all take a positive out of it, and one of the 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.
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
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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 -
Steps I Took For My Evrysdi Approval
In this episode of the Morale Monologue, I discuss the steps I took to get approval to start my Evrysdi treatments. Many of us experienced delays when starting our Spinraza treatment, and the majority of these delays were with our insurance companies. Since insurance companies have had enough time to understand the benefits that these treatments have for those of us with SMA, the insurance approval process is becoming much easier. I go into detail about how Genentech treated me when I called them to get more information, and how much of the help they were with regards to the insurance approval process, along with getting everything set up with regards to shipping the treatment to me.
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Phone Number To Genentech Evrysdi Helpline: 1-833-387-9734
Evrysdi Website: https://www.evrysdi.com/support-services.html?c=ris-173847ddbcd
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To learn more about Evrysdi, please visit 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 -
Unbelievable Results From Scholar Rock
In this episode of the Morale Monologue, I discuss the recent announcement by Scholar Rock, regarding the positive proof of concept data from their TOPAZ Phase 2 trial interim analysis of SRK-015 in patients with Type 2 and Type 3 spinal muscular atrophy. This report shows the positive outcomes that Scholar Rock received, and should also raise the level of excitement for all of us within the SMA community.
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Scholar Rock’s Article: https://www.businesswire.com/news/home/20201027005388/en/Scholar-Rock-Announces-Positive-Proof-of-Concept-Data-from-TOPAZ-Phase-2-Trial-Interim-Analysis-of-SRK-015-in-Patients-with-Type-2-and-Type-3-Spinal-Muscular-Atrophy
SMA News Today’s Article: https://smanewstoday.com/news-posts/2020/10/28/muscle-directed-therapy-srk-015-improves-motor-function-patients-with-sma-type-2-3-phase-2-trial-shows/
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
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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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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 -
Improving Home Accessibility: Make Everyday Life More Accessible
I’m always on the lookout to make everyday life more accessible. Recently, I made an awesome discovery. Have you heard of swing away door hinges? I hadn’t until I watched the YouTube video that is linked below. Since I have rather narrow doorways, I thought I’d give them a try. They’re a great way to add clearance for interior or exterior doors. Check out the differences they made in my house.
https://youtu.be/wAkCfBxcxtg
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To learn more about Evrysdi, please visit https://www.ApprovedForSMA.com
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Rechargeable Hand Warmer:
https://www.amazon.com/gp/product/B07JDCKRR9/ref=ppx_yo_dt_b_asin_title_o05_s00?ie=UTF8&psc=1
Foot and Calf Massage:
https://www.amazon.com/gp/product/B07XRN58YD/ref=ppx_yo_dt_b_asin_title_o04_s00?ie=UTF8&psc=1
HP Sprocket Photo Printer:
https://www.amazon.com/Sprocket-Printer-Social-Sticky-Backed-Decorative/dp/B07T745194/ref=sr_1_8?crid=13BLBD56VJGJF&dchild=1&keywords=hp+sprocket&qid=1606942254&sprefix=hp+spro%2Caps%2C514&sr=8-8
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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 -
Must Have Products for Winter
I’m not sure if it’s an SMA thing or just a me thing, but I’m forever cold. Therefore when I come across a product that includes the word “heated” or “warmer” I’ve got to check it out. This year I found a USB rechargeable hand warmer as well as a heated leg & foot massager. In this video I review both. One I like and one I’m not a fan of. What I am a fan of is keeping busy. The HP Sprocket might be just the ticket to keep me entertained during the never ending hibernation of 2020. Check out the video to see what I think about it. Do you have any hibernation must haves? I’d love to hear your product suggestions.
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
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Rechargeable Hand Warmer:
https://www.amazon.com/gp/product/B07JDCKRR9/ref=ppx_yo_dt_b_asin_title_o05_s00?ie=UTF8&psc=1
Foot and Calf Massage:
https://www.amazon.com/gp/product/B07XRN58YD/ref=ppx_yo_dt_b_asin_title_o04_s00?ie=UTF8&psc=1
HP Sprocket Photo Printer:
https://www.amazon.com/Sprocket-Printer-Social-Sticky-Backed-Decorative/dp/B07T745194/ref=sr_1_8?crid=13BLBD56VJGJF&dchild=1&keywords=hp+sprocket&qid=1606942254&sprefix=hp+spro%2Caps%2C514&sr=8-8
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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 -
Accessible Park Adventure
Hey everyone! Autumn in Minnesota is unpredictable to say the least. That’s why I decided to take advantage of what could possibly be the last nice day of the season and get out and about. Since socially distant activities are somewhat limited at the moment, I decided to have lunch with Mom at a local park. It ended up being a great way to check out some accessible features as well as get in some practice with my service dog Horton. I encourage you to check out your local parks if you have the opportunity.
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
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To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
================================
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?