michael-morale
Forum Replies Created
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Kevin – I never knew anything about the JACO robotic arm until I read your post. I did a YouTube search on this and found it to be very interesting. This is something that I’m going to look into for myself because I think it would add a dimension of freedom that I haven’t had in nearly 30 years. Thanks for bringing this up.
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For nearly 2 years, I have had my YouTube channels that have kept me occupied. One of the things that I want to learn was how to create videos and then edit them. I’ve learned how to edit my videos and I think I’ve done a pretty good job on both of my channels. While my primary focus is on my YouTube channel for my SMA journey, my other hobbies have also been watching movies on either Netflix or my Amazon prime account, and recently, I started subscribing to audible.com so that I could listen to books. Physically holding a book for me is very difficult, but listening to a book requires nothing more than a click of the mouse. With the number of books that are out there that have been converted to audio files, this should keep me entertained for many years. The subscription is about $15 per month, but you get one free book per month and you are able to carry over if you do not purchase a book for three months. One of my biggest hobbies used to be fishing, but since I lost much of the strength in my left arm, I haven’t been able to fish for nearly 15 years. Maybe my treatments and my physical therapy will allow me to regain enough strength so that I can continue my love of fishing.
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I have heard from multiple subscribers to my YouTube channel that their family members and friends have noticed differences in them after they started their treatments. I used to stutter as a child and I took speech therapy from a licensed speech pathologist for nearly 8 years. When my mother passed away in 2008, I delivered her eulogy. I told the story about my struggles with being able to speak and the difficulties that stuttering caused in my life. After nearly 8 years of speech therapy, I was able to speak clearly and with virtually no stuttering at all. My mother told me that learning how to speak clearly and without stuttering was both a blessing and a curse. She said it was a blessing because her baby could now speak without stuttering, but it was a curse because once I learned how to speak without stuttering, she said I never shut up. On my report card in school, while most kids would get in trouble for having notes stating that they talked too much, when I got this kind of note on my report card, my parents never said a word. I just wished they had been so agreeable when I would make the occasional “C” or “D” on my report card. When this happened, no amount of talking would get me out of trouble.
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After reading your post about speech therapy, I spoke to my physical therapist today about that very subject. I’ve noticed that since I started my Spinraza treatments, my breathing seems to be much better and my voice seems to be stronger. Laura, my physical therapist told me that it might be a good idea for me to ask my doctor to write a prescription for some speech therapy. She said that since I’m already working on my abdominal muscles, speech therapy would help because they focus on using your diaphragm when speaking. Working the diaphragm along with the abdominal muscles would be an added benefit to my workout.
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Soon after I finished my second loading dose of Spinraza, my doctor gave me permission to start physical therapy. Since this treatment is giving me the protein that my body was lacking, I now have the ability to sustain and build muscle. Once I began my physical therapy, Laura, my physical therapist, put me on a high-protein diet. As counterproductive as it sounds, building muscle begins by tearing down the muscle first, forcing it to grow. Protein is essential for the repair and building of new muscle. One of the things that Laura requested I do is to start drinking a protein shake. While there are many protein shakes on the market, the Pro Series Muscle Milk offers 40 grams of protein and it only has 200 calories with 1 gram of sugar. The name Muscle Milk scares a lot of people away because many of us are lactose intolerant. Muscle Milk contains no lactose products. It does contain milk protein, but anyone that is lactose intolerant like I am, can drink this product and it will not upset their stomach or cause any problems whatsoever.
I immediately noticed a difference in the recovery time of my muscles after drinking this protein shake. I drink one shake her day and I try to eat a high-protein diet. I’ve been working out with Laura since October of last year, and I can tell a huge difference in my muscles strength and my overall condition. I highly recommend using one of these protein shakes, especially The Pro Series Muscle Milk.
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New Balance makes quite a few shoes in extra wide widths. These are great shoes that last and the only company to offer extra wide shoes.
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Mike – I love how you said that you cried when they called to schedule your first injection. Some people say that men should never cry, but my reaction to the news that I was going to receive my injections were met with the same response. Congratulations on not only getting the approval to start your injections, but also congratulations on starting a new chapter in your life that will hopefully forever change the way you live each and every day of the rest of your life. Keep your head up and keep a smile on your face. You are in my prayers.
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I agree. Every case is different, and not all doctors and medical staff make this protocol error, but hopefully this will help someone else avoid this problem.
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Likewise Kevin, I’m looking forward to meeting you and participating in the conference. Thanks for all your help.
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Hey everyone, my name is Michael Morale. I have a YouTube channel and other social media accounts such as Twitter and Instagram with the username as smajourney51. I was one of the bloggers listed in this article and I’m extremely proud that the work that I’m doing and the work that my subscribers and followers are helping me with is being recognized. In my YouTube channel, I’m trying to spread the message about SMA and what we, as patients with SMA, have to look forward to in the not so distant future. I invite you to subscribe to my YouTube channel because I post new videos every Sunday where I talk about different topics related to SMA. I hope everyone has a blessed day.
Youtube Channel:Â https://www.youtube.com/channel/UCu6wTX2VsrOIgRP7xXcsAFA?disable_polymer=true
Twitter Account:Â https://twitter.com/smajourney51
Email Account: [email protected]
Instagram Account:Â https://www.instagram.com/smajourney51/