alyssa-silva
Forum Replies Created
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So glad to hear this, Crystal. Always here when you need it!
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I’m definitely not a planner, but I wish I was! If anything, I’ll make a list before bed of things I need to do for the next day. The spontaneity keeps a level of excitement in my life. 🙂
I’m currently sick, unfortunately, so my only goal for this month is to rest, heal, and stay healthy for Thanksgiving!
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I second everything Halsey said. Never in my life did I think there would be a treatment available for me. It’s absolutely incredible the strides that are being made in the SMA community— we are literally witnessing history being made.
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This is interesting and, quite honestly, very necessary to explore! I typically feel a huge decline after week 12 of my injection, so either increasing the dosage or frequency would be beneficial. I’ve heard others with SMA say this as well.
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That is definitely disappointing to some degree, especially since this drug holds such promise in essentially correcting SMA. However, I’m not sure it would deter me from taking it down the road just because, as Halsey said, they’re finding all the problems now as to prevent them from happening in adults.
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I don’t keep a journal, but I find writing/sharing my thoughts and feelings online and in my column to be cathartic as well. Any sort of creative expression is beneficial for my well-being, really.
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Ugh, fingers crossed everything works out for you! Minus transportation, I’m in a similar boat. I get my injections in the OR as a precaution and surgery only calls the day before to give me a time. More often than not, it’s scheduled for 7:30am which means I have to get up at 4am just to sit in two hours of traffic. I do have a FAM but she usually checks in after the fact.
The entire day is both physically and mentally exhausting, but even so, I’m grateful to have this opportunity.
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My favorite part about Halloween is going to bed and waking up to knowing that it is officially acceptable to listen to Christmas music. 🙂 However, I am a big fan of pumpkin Reese’s and the overall season that comes with the holiday!
Love the column, Kevin. Great connection made with the spirit of Halloween and getting creative living with SMA.
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We’ll miss you Ryan. Thanks for always sharing your insight with us and for being a great resource on how to navigate life with SMA. Safe to say I have some pretty big shoes to fill here!
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hey Ryan. unfortunately, I don’t have any suggestions, but I struggle with this too—especially in the winter months when I’m not doing much of anything. When I’m in a total writers’ block, I do some research. I read these forums, scope out SMA groups on social media and look for what people are asking. where can I add value and experience to help the community? how do I relate to certain topics others are talking about? hope these lil tips help ya!
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I’ve been to two. First one was an overnight bachelorette party in a beach town for my cousin, and my mom came with me. The second one I planned. I was the best man in my brother’s wedding, and we did a big BBQ then rented a party bus for the night. The bus wasn’t accessible, but my friend who was also in the wedding party took care of me while two of my other friends followed behind the bus with my wheelchair in my van lol. As with coordinating any social activity for us goes, there was more in-depth planning and creativity involved, but it all worked out in the end.
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Hi Jessica. If you have a pulse oximeter, first check her oxygen. If it is below her norm and she isn’t acting herself, I strongly suggest seeking medical attention immediately. As Kevin said, it never hurts to be on the safe side. Best wishes to you and your little one.
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Best of luck on your Spinraza journey, Mike! Sending you well wishes.
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So often I encounter experiences like this. Just the other day, I drove by a church whose ramp began at the edge of a sidewalk curb. Having a ramp to avoid stairs and inaccessibility kind defeats the purpose when there’s a step to get onto the ramp. Guess I won’t be going there anytime soon!
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Or how about the ones that say it’s just “allergies?!” I cringe every time but have to respect what they’re telling me. More often than not, it’s a cold…
I, too, try to see if my assistants can swap shifts if someone gets sick. But, if I’m the one canceling I’ll make the extra effort to give them hours elsewhere.
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Thanks for your input, Tracy. Even on a healthy day I typically ask that they take the same handwashing, sneezing, and coughing precautions. And I never leave the house without hand sanitizer.
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girl, that is truly amazing. I think people tend to glorify being homeschooled because it seems “easier.” but, based on my own personal experience, I’ve learned it poses its own unique set of challenges to endure, and not many people will understand that. personally, homeschool taught me to be more self-disciplined, and for that, I became a better student.
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I totally feel you on this. There have even been some Christmases I’ve had to skip out on because family members were sick. Hope you stay healthy this cold and flu season, Halsey!
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Yay! Thanks Halsey. 🙂 I’m looking forward to it as well!
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thanks Kevin! I appreciate the opportunity!
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Likewise! Happy to be here.
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Hey Kelly! Nothing silly about that introduction— I started this thread to get to know you better, so I really enjoyed reading it. Switching doctors must be such a headache (as personal experience has shown), but fortunately, you have some beautiful beaches nearby to de-stress. I have some friends in St. Augustine— it looks beautiful there!! Thanks for reaching out and reading the column. 🙂
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What Ryan said haha.