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The Morale Monologue
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The Reality of Living With SMA
In this episode of the Morale Monologue, I discuss the reality of living with SMA. I share my viewpoints regarding not only living with this disease, but also understanding the differences between reality and fiction when dealing with SMA.
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To join in on discussions regarding this and many other SMA topics, please visit: http://www.smanewstoday.com/forums
Are you interested in learning more about spinal muscular atrophy? If so, please login to http://www.smanewstoday.com -
The Toughest Decision In My Life
In this episode of the Morale Monologue, I discuss the toughest decision that I’ve ever had to make in my life. Like many of you, I’ve been on Spinraza since September 2017, and with the potential approval coming from the FDA regarding Risdiplam in August, and given the fact that I’ll be 55 years old in August, my doctor and I decided that this would be the appropriate time to make the switch from Spinraza to Risdiplam. I give you my reasons as to why I made this decision, and hope that you will also ask these questions to yourself, if and when you and your doctors start discussing your potential treatment, and which one would be best for you.
Let me state right now that my decision is my own, and I don’t want anyone making the decision to switch based on my opinions only. You need to speak to your family, friends, loved ones and doctors before making any decision on your future treatments for SMA. You and your doctor can best decide on the treatment that’s best for you, and I hope that my video will give you something to think about when it comes time to make this decision.
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To join in on discussions regarding this and many other SMA topics, please visit: http://www.smanewstoday.com/forums
Are you interested in learning more about spinal muscular atrophy? If so, please login to http://www.smanewstoday.com -
Tips On Purchasing A New Electric Wheelchair
In this episode of the Morale Monologue, I discuss the process that I’m going through while purchasing a new electric wheelchair. The majority of us with SMA, sit in wheelchairs for the majority of the day, and purchasing a new chair can be a difficult process. I give you my tips and suggestions on how to go about this process.
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To join in on discussions regarding this and many other SMA topics, please visit: http://www.smanewstoday.com/forums
Are you interested in learning more about spinal muscular atrophy? If so, please login to http://www.smanewstoday.com -
Start Talking To Your Doctors About risdiplam
In this episode of the Morale Monologue, I discuss the importance of talking to your doctors about risdiplam. This oral therapy is extremely promising for those of us with spinal muscular atrophy (SMA). Currently, we expect the FDA to make a decision regarding risdiplam in August of this year.
Now is a great time to talk with your specialists, and see if this treatment option would work for you. I give you some guidelines for what questions to ask, and other related information. Hope you all enjoy this video.
Have you spoken with your doctors about risdiplam? What other questions do you have about this treatment?
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To join in on discussions regarding this and many other SMA topics, please visit: http://www.smanewstoday.com/forums
Are you interested in learning more about spinal muscular atrophy? If so, please login to http://www.smanewstoday.com -
Differences Between Risdiplam and SRK-015
Hey everyone! Hope you’re all staying safe and healthy out there.
Check out my latest YouTube video here. In this episode, I discuss key differences between two potential SMA treatments. The first is Roche and Genentech’s experimental therapy risdiplam, and the second is Scholar Rock’s therapy SRK-015. Both are hot topics in the SMA community right now.
We expect the FDA to make a decision regarding risdiplam later this year. My video also addresses this subject.
NOTE: Please visit our main website for more stories and information about these two therapies.
You can find articles about risdiplam here - https://smanewstoday.com/tag/risdiplam/
and articles about SRK-015 here https://smanewstoday.com/tag/srk-015/.
Thanks everyone! Hope you all enjoy this episode.
Do you have any additional questions about either of these treatments? Have you discussed them with your healthcare providers?
Dose of DeAnn
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Do I Risk My Life For a Wheelchair?
Hey everyone! Keeping it real is the theme of this video. I don’t think people realize how stressful the current situation is for those of us considered “high-risk.” After deciding to start the process for a new wheelchair the situation became real. I’ve been doing well in my extended hibernation, but now I have to have an in person evaluation with the DME company and occupational therapist.
Can you believe the people at the OT office don’t wear masks? Hearing this not only has me scratching my head, figuratively because I can’t reach my head, but also second guessing if I should risk it for a wheelchair. Ugh, I’m so apprehensive, but I can’t live under a rock. What kind of risks do you guys take? Am I being overly paranoid?
I'd love to hear from you! Let me know your thoughts about it in the comment section below! -
Try Something New
Hey everyone! Hope you all are doing well. I have to say hibernation is getting old. I don’t really feel comfortable doing too much out in public just yet, so I’m having to find things to do at home. In this video I show you something new I tried. Even though I wasn’t sure if it was something I could physically do I thought I’d give it a whirl. You’ll have to watch the video to see what it was and if it worked out. Have you tried something new recently? Was it successful? I’d love to hear about it. -
Try Something New
Hey everyone! Hope you all are doing well. I have to say hibernation is getting old. I don’t really feel comfortable doing too much out in public just yet, so I’m having to find things to do at home. In this video I show you something new I tried. Even though I wasn’t sure if it was something I could physically do I thought I’d give it a whirl. You’ll have to watch the video to see what it was and if it worked out. Have you tried something new recently? Was it successful? I’d love to hear about it. -
Creating a Sanctuary
How has everyone’s week gone? The weather here in Minnesota has finally turned a corner. With that I’ve been able to spend more time outside. I consider my backyard my sanctuary. A place where I can destress and let go of the cares of the world. Do you have a sanctuary? What’s in your space? I’d love to hear about it. Here’s a how I create my sanctuary. -
Interview with Jennifer Perkins, a Mother Living with SMA
Mother’s Day month is quickly coming to a close. Okay, I know Mother’s day isn’t a month-long celebration, but maybe it should be.
Recently I had the opportunity to interview Jennifer Perkins about being a mother with SMA and having a family. Family is a topic that often comes up here on the forums. Since I don’t have firsthand experience in this department I thought I’d talk with someone who does. You might recognize Jennifer from her YouTube channel. If not check it out here. I hope you enjoy our conversation as much as I did.
Do you have any questions for Jennifer? Who here is also a parent with SMA?
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?