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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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).

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?

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?

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?

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?

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?

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!