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The Morale Monologue
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The Morale Monologue #32: Problems With my Doctor - What Do I Do?
In this episode of the Morale Monologue, I’m sharing my opinions that I gave to one of my subscribers to my personal YouTube channel. This person was having issues with a doctor, and I wanted to address these issues.
I did a video a while back about how my doctor gave me permission to take physical therapy. One of my subscribers talked to her doctor, but had a bad experience when she brought up this topic. She asked me for my opinions as to what I would do, and I’m sharing these opinions with you. Hopefully, this may help you if you encounter the same problems with your doctor. -
The Morale Monologue #31 - EXCITING NEWS Zolgensma Update A MUST SEE
In this episode of the Morale Monologue, I’m sharing some information that was recently announced during the Cure SMA webinar, that was held on Wednesday, August 28, 2019. In this webinar, Cure SMA had representatives from AveXis Pharmaceuticals and the FDA. They discussed the most recent information regarding Zolgensma, along with information regarding the possibility of it becoming available to those of us that are adults.
STRONG (NCT03381729) in SMA Type 2 children 6 months to 5 years
REACH (NCT04042025) Possibly for adults up to 60 years
* Est. Study Start Date: 09/01/2019
* Est. Primary Completion Date: 12/31/2034
* Est. Study Completion Date: 12/31/2034
NOTE: The completion dates are for the conclusion of the REACH trial to end, but it may be available for SMA patients in 2022 or 2023
For More Information: www.clinicaltrials.gov
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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 #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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Dose of DeAnn
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Dose of DeAnn Episode 41: 31 Days of SMA
Happy Tuesday everyone! Hope you all had a great weekend.
Check out the latest episode of Dose of DeAnn here. In light of SMA awareness month, SMA News Today has been doing an initiative called "31 Days of SMA." This is a collection of stories, all written by people in the SMA community. There are stories about employment, relationships, accessible travel, physical therapy, and more. You can view all of these stories on our Instagram page - https://www.instagram.com/smanewstoday/
I discuss some of these stories here, and I share how this project has changed my perspective on awareness month. Hope you all enjoy watching! And please subscribe to our YouTube channel if you haven't already.
Do you have any favorite 31 Days of SMA stories? -
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?
Ryan’s Robotics
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Ryan's Robotics Episode 8: Summer Adventures With My JACO Arm
Check out my latest video here. In this episode, I talk about what I've been doing this summer. This was my first full summer with my JACO, and the arm proved to be especially useful at my cousin's wedding. Watch the video to see why.
This episode is short and sweet, and I hope you all enjoy it! Let me know your thoughts, and please subscribe to our YouTube channel. Thanks for watching! -
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
Join the SMA Forums: https://smanewstoday.com/forums/
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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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