@smajourney51
-
Michael Morale started the topic Risdiplam Questions For Roche Genentech And Our Insurance Companies in the forum The SMA News Today YouTube Channel 2 days, 17 hours ago
In this episode of the Morale Monologue, I’m giving you my opinions to questions that were asked regarding Roche/Genentech’s new potential treatment known as risdiplam. These questions dealt specifically with Roche/Genentech and our insurance companies, and I believe that these are questions that will need to be ans…[Read more]
-
Michael Morale started the topic Great Questions Regarding Risdiplam in the forum The SMA News Today YouTube Channel 2 weeks, 4 days ago
In this episode of the Morale Monologue, I’m giving you some more great information regarding Roche/Genentech’s new potential treatment known as risdiplam.
Currently, risdiplam is under Priority Review Status by the FDA, and some of my subscribers and followers to my personal You…[Read more]
-
Michael Morale started the topic EXCITING NEWS – Risdiplam Could Soon Be Available in the forum The SMA News Today YouTube Channel 1 month, 1 week ago
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 r…[Read more]
-
Michael Morale started the topic Spinraza Is Becoming Routine in the forum The SMA News Today YouTube Channel 1 month, 3 weeks ago
Hey everyone! Hope you all are doing well. For those of you in the U.S., hope you all had a great Thanksgiving.
In this episode of the Morale Monologue, I discuss how my Spinraza injections are becoming another part of my routine. For those of us who are on this treatment, many of…[Read more]
-
Michael Morale replied to the topic Sad News in the forum Adults With SMA 2 months ago
While growing up, my parents always taught me that the animals that we had as pets were more than just pets, they were part of the family. They taught us the value that these animals bring, and by doing so, my brother and I never looked at them as animals, we thought of them as family members. While I’ve lost numerous pets in my life, I’ve nev…[Read more]
-
Michael Morale started the topic Finding A Physical Therapist Can Be Challenging in the forum The SMA News Today YouTube Channel 2 months ago
Hey everyone! Hope you’re all having a great week so far.
In this episode of the Morale Monologue, I discuss how important it is 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 wh…[Read more]
-
Michael Morale started the topic Biogen To Possibly Increase Spinraza Dosing Amounts in the forum The SMA News Today YouTube Channel 2 months, 2 weeks ago
Hey everyone! Hope you’re all having a great week so far.
Check out the latest episode of the Morale Monologue here. 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 u…[Read more]
-
Michael Morale posted a new activity comment 2 months, 3 weeks ago
Scott – Thanks for your question. This is actually a question that’s being asked by many people, especially those of us that are on treatment with Spinraza. I have been on Spinraza now for over 2 years, and like your granddaughter, I’ve seen some improvements, and I think this is a combination of both the Spinraza treatments and taking physical…[Read more]
-
Michael Morale started the topic The Morale Monologue #34 – Remaining Optimistic While Living With Spinal Muscular Atrophy in the forum The SMA News Today YouTube Channel 3 months, 1 week ago
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 hop…[Read more]
-
Michael Morale started the topic The Morale Monologue #33 – Letting Physical Therapy Students Work With SMA Patients in the forum The SMA News Today YouTube Channel 3 months, 3 weeks ago
Happy October everyone!
In this episode of the Morale Monologue, I’m sharing a video that I did for my physical therapist, Emily. Currently, Emily and I are working on a series of articles and videos for the SMA News Today HCP site. This healthcare professional website is designed for physical therapists, d…[Read more]
-
Michael Morale started the topic The Morale Monologue #32: Problems With my Doctor – What Do I Do? in the forum The SMA News Today YouTube Channel 4 months, 1 week ago
Hey everyone! Hope you all are having a great week so far.
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 a…[Read more]
-
Michael Morale started the topic My Weekly Journal – 09/02/19 Through 09/08/19 in the forum Adults With SMA 4 months, 2 weeks ago
Monday, Sept. 2, Through Sunday, Sept. 08 – With everything that I’m doing at BioNews Services, along with my physical therapy schedule, and everything else that I have going on in my life, this was an extremely busy week. I’m currently working with a doctor who specializes in pulmonary rehabilitation, so we can get his podcasts started for… -
Michael Morale replied to the topic Switching from Spinraza to Zolgensma? in the forum Zolgensma (AVXS-101) News and Information 4 months, 3 weeks ago
Pawel – Cure SMA might be a good place to start, but you will want to make sure that you let them know that you live in Poland. They may be able to direct you on who you should speak to.
I hope that everything works out for you, and please keep us updated.
-
Michael Morale started the topic The Morale Monologue #31 – EXCITING NEWS – Zolgensma Update – A MUST SEE in the forum The SMA News Today YouTube Channel 4 months, 3 weeks ago
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 Z…[Read more]
-
Michael Morale replied to the topic Switching from Spinraza to Zolgensma? in the forum Zolgensma (AVXS-101) News and Information 4 months, 3 weeks ago
Pawel – My name is Michael Morale, and I’m the Director of Multichannel Content for BioNews Services, the parent company of SMA News Today. I wanted to take a few minutes and try to possibly answer some of your questions and concerns. First, before I began, the ultimate decision to switch from Spinraza to Zolgensma, needs to be made between you a…[Read more]
-
Michael Morale started the topic My Weekly Journal – 08/26/19 Through 09/01/19 in the forum Adults With SMA 4 months, 3 weeks ago
Monday, August 26, Through Sunday, Sept. 1 – Have you ever had one of those weeks where everything seemed to be in the wrong place just because you had to rearrange one meeting or event? My caregivers came back from vacation on Thursday morning, so I had to move my workout with Emily from Tuesday to Thursday afternoon. When Tuesday came, I felt… -
Michael Morale started the topic My Weekly Journal – 08/19/19 Through 08/25/19 in the forum Adults With SMA 5 months ago
What a crazy and hectic week! My caregivers that live with me left on Tuesday for their family vacation, and I have a temporary caregiver living with me until they return. Last year, I had a bad experience with the temporary caregivers that I used. When my caregivers returned from their vacation, I was admitted to the hospital two days later… -
Michael Morale started the topic The Morale Monologue #30 – Hip Muscle Exercises For SMA Patients in the forum The SMA News Today YouTube Channel 5 months ago
In this episode of the Morale Monologue, I share a video that I produced for my physical therapist, Emily. 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, these muscles in our hips tend to get tight and sore…[Read more]
-
Michael Morale started the topic My Weekly Journal – 08/12/19 Through 08/18/19 in the forum Adults With SMA 5 months, 1 week ago
Monday, August 12, Through Sunday, August 18:This week has been a crazy one, to say the least. A week ago, I was experiencing quite a bit of weakness in my right arm, and it persisted for some time. Luckily, my arm started to recover on Monday. My strength level then slowly improved throughout the week.I’m not sure why I experienced… -
Michael Morale started the topic My Weekly Journal – 08/05/19 Through 08/11/19 in the forum Adults With SMA 5 months, 2 weeks ago
Weekly Journal 8/5/19 through 8/11/19 – While I was hoping for an easy week, it ended up being full of activity and not much excitement. I did take a day of vacation on Friday. Thursday was my birthday, and I wanted to relax a bit. Trying to cram five days worth of work in the four days presented challenges. Still, I refused to let these… - Load More
