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The Morale Monologue
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Great Questions Regarding Risdiplam
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EXCITING NEWS - Risdiplam Could Soon Be Available
In this episode of the Morale Monologue, I’m discussing a new treatment for SMA that will possibly be available during the first half of 2020. Roche/Genentech was granted Priority Review Status, for their potential treatment known as risdiplam. In my video, I go over a PowerPoint presentation explaining what risdiplam is, and some of the benefits that I see risdiplam having for those of us who have SMA.
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Are you interested in learning more about the latest treatment for spinal muscular atrophy? Visit TreatSMA.com to see how this treatment works, hear about family stories, and learn about the steps to starting treatment. Visit TreatSMA.com.
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Finding A Physical Therapist Can Be Challenging
In this episode of the Morale Monologue, I’m discussing how important it is when trying to find a physical therapist to work with you. Finding a physical therapist that’s willing to work with an SMA patient can be challenging. I share what happened to me, in hopes that your journey in finding a physical therapist will be easier. I also share some information regarding a recent lecture that I was asked to do for U.T. Southwestern Medical Center’s School of Physical Therapy. I was asked to speak to the graduating doctorate students who would soon be receiving their Doctorates of Physical Therapy, (DPT). -
Biogen To Possibly Increase Spinraza Dosing Amounts
In this episode of the Morale Monologue, Michael shares an article that was published on the SMA News Today website regarding Biogen Pharmaceutical’s decision to conduct a study to possibly increase the dosing amounts of Spinraza. Recently, Biogen Pharmaceutical’s decided to conduct a study to possibly increase the dosing amounts of Spinraza. This study will look at the effects of increasing the dosing amount for those of us who are receiving this treatment. I share my thoughts on this news, and what it could mean for adults receiving Spinraza. -
Remaining Optimistic While Living With Spinal Muscular Atrophy
In this episode of the Morale Monologue, I’m sharing an email that I received from one of my subscribers to my personal YouTube channel. My subscriber asked how I continue to remain optimistic while living with SMA. I give her my reasons regarding my optimism and enthusiasm, and I’m sharing this with you in the hopes that it will brighten your day and give you something to look forward to.
Hope you all enjoy this video! If you haven't already, please subscribe to the SMA News Today YouTube channel. We'd greatly appreciate it.
Do you have any takeaways from this video? How do you remain optimistic despite living with SMA?
Dose of DeAnn
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Transitioning to Life Without My Service Dog
The first episode of Dose of DeAnn for 2020 is live. As some of you may know, I lost my service dog, Roy, in November. In this video I tell you more about what happened. I address the question of whether or not I’m getting another service dog as well. You’ll also see a glimpse of how I’m adjusting to not having a service dog, and some of the challenges I face.
It hasn’t been an easy transition for me. Your love and support has meant the world to me. In the year ahead I plan on sharing life’s challenges, rewards, and everything in between.
What are some challenges you’re facing? Do you have anything in 2020 you’re looking forward to? I’d love to hear about it! -
Making Game Night More Inclusive
I don’t know about you all, but my family loves to do game nights around the holidays. They’re tons of fun, but they can be challenging for me to participate in. I can’t do things like hold up a stack of cards, or move pieces across a board easily.
Fortunately, when there’s a will, there’s a way. In this video, I talk about some creative solutions I’ve come up with to deal with these obstacles. With some simple tools, things like holding cards, rolling dice, and even putting puzzle pieces together can be accomplished. Enjoy!
Do you have any tips of your own? Are there any other activities you do during the holidays? -
Crockpot Cooking and SMA
Inspired by one of Halsey's recent columns, and a cooking website, I decided to share why I love crockpot cooking. Not only is it easy to prepare meals ahead of time, but it makes tender and delicious flavorful food. Even grocery shopping is made simple when you utilize services available like grocery pick up. Hopefully this gives everyone some ideas for Thanksgiving.
Do you have a favorite crockpot recipe to share? -
Interview With Andrea Klein, Founder of Breathe With MD
Check out the latest episode of Dose of DeAnn here. This one's a bit long, but it's well worth your time. I interviewed Andrea Klein, founder of Breathe With MD - www.breathewithmd.org . This is an advocacy organization that helps make people living with MD, and doctors, aware of respiratory issues.
Andrea started this organization after her sister died from respiratory complications. We talked about the history of Breathe With MD, tips for getting through cold and flu season, supplemental oxygen, and more. This was an educational conversation for me, and I hope you all enjoy it too!
Do you have any questions for Andrea? Do you have any takeaways from this video? -
Taking My Service Dog to His Veterinary Appointment
I recently took my service dog Roy to his regular vet check-up, and I show viewers clips of this appointment.
Roy is doing really well! He never particularly enjoys going to the vet, but he was a good sport about it. It's an important part of his care. Hope you all enjoy this video!
Do you have any questions about caring for a service dog?
Ryan’s Robotics
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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? -
Using JACO To Put On My Hat and Sunglasses
Check out my latest video here. In this episode of Ryan's Robotics, I show you all how I use my JACO robotic arm to put on my hat and sunglasses. It's a simple task, but it's little things like this that make my life easier.
Do you have any questions about the JACO arm? Are there any particular tasks you would like me to show you in a future video? -
The Dynamic Arm Support
Check out the latest episode of Ryan's Robotics here. I talk about the Dynamic Arm Support, which is another device that Kinova Robotics makes. A Kinova rep spoke with me, and did a full demonstration of this device. It's something that a lot of people here might find useful.
Hope you all enjoy this video! If you haven't already, please subscribe to the SMA News Today YouTube channel. We'd greatly appreciate it.
Do you have any questions about the Kinova arm support? -
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! -
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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