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The Morale Monologue
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The Morale Monologue #30 - Hip Muscle Exercises For SMA Patients
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In this episode of the Morale Monologue, I share a video that I produced for my physical therapist, Emily. I go to physical therapy once a week, and over the past year, Emily has been working to stretch the muscles in both of my hips. For those of us who sit in wheelchairs for the majority of the day, like I do, these muscles in our hips tend to get tight and sore as the day progresses, and the exercises that I’m going to show you in this video, will hopefully benefit you as much as they have me. Please talk to your physical therapist about including these exercises in your workout routine. Trust me, you’ll be glad you did.
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Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
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The Morale Monologue #29 - Transferring A Patient With SMA During Physical Therapy
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In this episode of the Morale Monologue, I discuss the proper techniques to transfer a patient with SMA out of their wheelchair. I’ve been taking physical therapy for the past 2 years, and every other week, my physical therapist and her assistant transfer me from my wheelchair to the therapy table. Physical therapists learn how to transfer a patient is in school, but the majority of their patients have upper body strength and balance control, and are able to assist in the transfer process. Patients with SMA, rarely have upper body strength and balance control, which makes transferring them more of a challenge. In the video, we demonstrate the proper techniques when transferring a patient with SMA.
My physical therapist’s article: https://hcp.smanewstoday.com/2019/07/24/transferring-a-patient-with-sma-during-therapy/
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Are you interested in understanding gene therapy?
ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases.
Visit www.exploregenetherapy.com
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The Morale Monologue #27 - I Am Unable To Travel On Planes And I Blame The FAA
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In this episode of the Morale Monologue, I discuss my frustrations and anger with my inability to travel by plane. I talk about the FAA regulations regarding safety, and not being able to travel on a plane in my wheelchair. I give you my opinions as to how we can make our voices heard, so that we can possibly get the FAA to change their safety standards, so that those of us in wheelchairs have the same abilities and freedoms as able-bodied individuals.
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Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
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The Morale Monologue #26 - 4 Tips To Follow Before And After Your Spinraza Injection
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In this episode of the Morale Monologue, I discuss 4 tips that I follow before and after my Spinraza injections. These tips that I’m giving, will hopefully make your future Spinraza injections go as smooth as possible.
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Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
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The Morale Monologue #25 - Key Differences Between Spinraza And Zolgensma
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In this episode of the Morale Monologue, I discuss the key differences between AveXis’s drug ZOLGENSMA and Biogen’s drug Spinraza. I explain what Spinraza does with regards to the SMN2 gene, and what ZOLGENSMA does with regards to the SMN1 gene.
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YouTube Video Explaining Exon 7: https://www.youtube.com/watch?v=YLluIVwg_y4&index=4&list=LLu6wTX2VsrOIgRP7xXcsAFA&t=0s
Article #1 From SMA News Today: https://smanewstoday.com/2019/05/26/great-news-to-such-a-blessing-greet-zolgensmas-approval/
Article #2 From SMA News Today: https://smanewstoday.com/2019/05/24/how-zolgensma-works-and-clinical-trials-spanning-range-of-sma-patients/
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Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
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Dose of DeAnn
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Dose of DeAnn Episode #40 - Navigating Outdoor Events
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Check out the latest episode of “Dose of DeAnn” here. Recently, inclement weather deterred my plans to go to an art festival. However, the next day was gorgeous.
For this video, I decided to share my tips for navigating outdoor events. From scoping out the venue to timing, and even parking, I walk you through what I do to make things easier.
I also show you some of the essentials I bring along. If anyone has additional hints or advice in this area, I'd love to hear it!
Thanks for watching!
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Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
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Dose of DeAnn Episode #39 - Understanding Disability Benefits
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Check out the latest episode of “Dose of DeAnn” here. I talk about the importance of understanding disability benefits, and I share my experiences in this area. Many people think that it’s impossible to work and retain benefits, and I’m happy to debunk this myth in this video.
Of course, there there are guidelines to follow. A benefit analysis helped me understand my situation, and what I need to do to continue receiving necessary benefits.
I also touch on the basics, like the differences between SSI, SSDI and DAC Benefits. In my home-state of Minnesota, here are some great resources to look into: Goodwill Easter Seals Minnesota | gesmn.org | Work Incentives Connection | mnworkincentives.com | 1-800-976-6728 | 711. I highly recommend checking into your state’s resources to learn more.
I hope you all enjoy this video! Let me know what questions you have, and feel free to share your own tips for working as well.
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Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
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Dose of DeAnn Episode #38 - Review of Aftershokz Headphones
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In this episode, I review a pair of Aftershokz headphones. These headphones use conduction technology, which makes them pretty user-friendly. They're also Bluetooth, so I can use them as a headset to make and receive calls. I can also use them to listen to videos and podcasts.
All in all, I find them pretty helpful. Has anyone here tried these before? What do you think?
Let me know your thoughts, and thanks for watching!
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Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
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Dose of DeAnn #37: Spinraza, Zolgensma, and Other SMA Treatments
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In this video, I share my thoughts on the different treatments for SMA. Some of these drugs are already available, while others are in development and in clinical trials.
As treatments like Spinraza and Zolgensma come to the market, the face of SMA is changing day by day. As such, questions and concerns arise. These concerns include access to treatment, how SMA types are categorized, and if the standard equipment for SMA individuals is really necessary. I discuss my thoughts regarding these topics.
What questions do you have about the state of SMA research? Are you on any active treatment? -
Dose of DeAnn Episode #36 - Service Dog Grooming & Re certification
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In the latest episode of “Dose of DeAnn,” I talk about how I have to get my service dog Roy re-certified every few years. Canine Companions, which is the organization I use, does this to make sure that the dog is still qualified to work for his or her owner. We meet the trainers at the Mall of America, and it’s a pretty simple process.
Roy and I passed the certification test with flying colors, and I documented the whole experience in this video. I’d love to hear your thoughts in the comments section, or here in the forums.
Who here has a service dog? Do you have to do this re-certification test as well?
Thanks for watching! And be sure to subscribe to our YouTube channel if you haven’t already.
Ryan’s Robotics
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Ryans Robotics Episode #7 - Assistive Technologies
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In the seventh episode of “Ryan’s Robotics,” Ryan Berhar talks about some of the other assistive technologies he uses, besides his JACO robotic arm.
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Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
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Ryan's Robotics Episode #6 - Using My Jaco Robotic Arm Using A Utility Holder
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In this video, I talk about the utility holder for my JACO robotic arm. This device allows me to use things like forks, spoons, and other utensils.
I hope you enjoy this video, and please let me know if you have any questions about the JACO arm. Also, be sure to subscribe to our YouTube channel.
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Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases.
Visit www.exploregenetherapy.com
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Ryan’s Robotics Episode #5: Modifying My Suction Machine
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In this episode, I talk about modifying my suction machine so that I can operate it with my JACO robotic arm. A suction machine is something that many of us in the SMA community use to help with our breathing and swallowing. Prior to this modification, I had to rely on other people to help me use it.
It’s exciting to continually gain more independence with my JACO arm, and this is just another example. I hope you all enjoy this video, and please be sure to subscribe to our YouTube channel if you haven’t already. Thanks for watching!
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Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases.
Visit www.exploregenetherapy.com
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Ryans Robotics Episode #4 - Using the JACO Robotic Arm in Public
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Check out the latest episode of “Ryan’s Robotics” here. In this episode, I give viewers a glimpse of how I use my JACO robotic arm in public. Since I go to Starbucks all the time, I filmed some footage of me getting coffee and paying for my order. You’ll get to see how the arm comes into play here, and how it increases my independence.
Hope you enjoy this video! Let me know your thoughts in the comments, and be sure to subscribe to the SMA News Today YouTube channel. Hope you all have a great day.
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Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases.
Visit www.exploregenetherapy.com
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Ryan’s Robotics Episode #3 - How I Acquired My JACO Robotic Arm
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In the latest episode of “Ryan’s Robotics,” I talk about how I acquired my JACO robotic arm. I take viewers through the process of testing out a model JACO arm, how I went about fundraising, and what it was like when I started to use mine.
This video is straightforward, but I hope it will answer some questions for those looking to acquire one of these devices. Feel free to ask me questions here or in the forums, and also check out the company’s website at http://www.kinovarobotics.com.
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Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
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