@smajourney51
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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 2 days, 23 hours 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]
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Michael Morale started the topic My Weekly Journal – 09/02/19 Through 09/08/19 in the forum Adults With SMA 1 week, 4 days 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 2 weeks, 2 days 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.
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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 2 weeks, 2 days 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]
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Michael Morale replied to the topic Switching from Spinraza to Zolgensma? in the forum Zolgensma (AVXS-101) News and Information 2 weeks, 3 days 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]
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Michael Morale started the topic My Weekly Journal – 08/26/19 Through 09/01/19 in the forum Adults With SMA 2 weeks, 4 days 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 3 weeks, 4 days 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 1 month 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]
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Michael Morale started the topic My Weekly Journal – 08/12/19 Through 08/18/19 in the forum Adults With SMA 1 month 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 1 month, 1 week 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… -
Michael Morale started the topic The Morale Monologue #29 – Transferring A Patient With SMA During Physical Therapy in the forum The SMA News Today YouTube Channel 1 month, 2 weeks ago
In this episode of the Morale Monologue, I discuss the proper techniques to transfer a person with SMA out of their wheelchair. I’ve been doing physical therapy for the past two years. Every other week, my physical therapist and her assistant transfer me from my wheelchair to the therapy table. Physical therapists l…[Read more]
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Michael Morale started the topic My Weekly Journal – 07/9/19 Through 08/03/19 in the forum Adults With SMA 1 month, 2 weeks ago
Monday, July 29, Through Sunday, August 4 – I got so much done this week, it felt as if I had 30 hours in each day, and had eight days in the week. I guess that’s one of life’s mysteries that none of us will ever be able to fully understand. Why can we get so much done one week and then feel that we get nothing done another? It’s been just… -
Michael Morale started the topic My Weekly Journal – 07/22/19 Through 07/28/19 in the forum Adults With SMA 1 month, 3 weeks ago
Monday, July 22, Through Sunday, July 28 – Overall, this was a great week. I completed quite a few work projects, and everything went smoothly. I ate well, got some good rest, and my body feels great. Other than a little bit of discomfort in my right hip, which I’ll talk about in just a moment, it was a pretty uneventful and smooth… -
Michael Morale started the topic My Weekly Journal – 07/15/19 Through 07/21/19 in the forum Adults With SMA 2 months ago
Monday, July 15, Through Sunday, July 21 – This past week was smooth and non-eventful. The only time that I left the house was when I went for my workout. Besides this, I spent the majority of my days working on podcasts, flash briefings, and trying to restructure BioNews Services’ multimedia and social media platforms. Work is keeping me busy,… -
Michael Morale started the topic The Morale Monologue #28 – How To Avoid Headaches After Your Spinraza Injections in the forum The SMA News Today YouTube Channel 2 months ago
In this episode of the Morale Monologue, I share my tips and tricks on how to avoid getting a headache after one of your Spinraza injections. Headaches are a normal side effect with any intrathecal or spinal cord injection, and the tips that I’m sharing with you, will possibly help you to avoid g…[Read more]
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Michael Morale started the topic My Weekly Journal July 8-14: Spinraza and Physical Therapy in the forum Spinraza 2 months, 1 week ago
Monday, July 8, Through Sunday, July 14:This week started out with a bang, and it got better as the week went on. On Monday, July 8, I went back to UT Southwestern Medical Center for my fifth maintenance dose of Spinraza. It’s hard to believe that I’ve now had nine injections, and it shocks me how fast the time has flown by. This was… -
Michael Morale replied to the topic Which SMA Treatment Are You Currently Pursuing? in the forum Zolgensma (AVXS-101) News and Information 2 months, 1 week ago
Kristin – I wanted to address your comment and maybe answer the question that you had. AveXis is currently going through clinical trials of the IT or intrathecal delivery of Zolgensma. At the present time, Zolgensma is only available to infants and toddlers 2 years of age or younger, irregardless of the type of SMA that they have. (1, 2, 3 or 4)…[Read more]
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Michael Morale replied to the topic Which SMA Treatment Are You Currently Pursuing? in the forum Zolgensma (AVXS-101) News and Information 2 months, 1 week ago
I think it’s a little premature to say that Zolgensma is going to be the superior treatment. While Zolgensma is designed to replace the SMN1 gene, and Spinraza is designed to correct the SMN2 gene, both treatment options have their advantages. At the current time, AveXis is going through clinical trials with an IT or intrathecal delivery for…[Read more]
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Michael Morale started the topic The Morale Monologue #27 – I Am Unable To Travel On Planes And I Blame The FAA in the forum The SMA News Today YouTube Channel 2 months, 2 weeks ago
In this episode of the Morale Monologue, I discuss my frustrations with flying for wheelchair-users. I talk about the FAA regulations regarding safety, and not being able to travel on a plane in my wheelchair.
This is an issue that many of us with disabilities have to deal with. It’s time that those of us in…[Read more]
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Michael Morale started the topic My Weekly Journal – 06/24/19 Through 06/30/19 in the forum Adults With SMA 2 months, 3 weeks ago
Monday, June 24, Through Sunday, June 30 –This week, everything fell into place just like I wanted and expected it to. While I only left the house on Tuesday for therapy, I spent most of my time working for BioNews Services. I’m truly blessed to have this job. I know too many people in this world who don’t want to work, and expect… - Load More
