alyssa-silva
Forum Replies Created
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Thanks Halsey! As I’m sure you’ve learned from volunteering at Turnstone, it’s so rewarding to be involved with something that’s bigger than yourself. It’s amazing to see what happens when people ban together to fight for a greater good.
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It’s called Working On Walking, and we raise money and awareness for SMA. It is both challenging and rewarding, but the rewarding aspect far outweighs the challenges to make it worth it. 🙂
I’m kind of with ya on your thoughts regarding Giving Tuesday. Plus, I think with everyone promoting their organizations, it’s easy to get lost in the mix. BUT, it’s still a great opportunity to reach out during the season of giving. People are more inclined to give at this time of year.
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I’m definitely in a love/hate relationship with social media. On one end, it has helped me not only keep in touch with my friends and family but also connect with so many incredible people from all different walks of life. They’ve enriched my life in some way, and I’m truly grateful for the power of social media.
That being said, it can also be detrimental to my emotional wellbeing. On the days when I’m in a rut and scrolling through pictures of people living their best lives, it can sometimes make me feel inadequate or incapable. I know social media is everyone’s highlight reels though, so when I begin to tell myself these lies, it usually means I just need a 48-72 social media hiatus. And that helps a lot.
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An Alexa microwave sounds so cool! But, as you said, I wouldn’t really get much use out of it because I can’t use one to begin with. I really want one of those bluetooth thermostats (can’t think of the name right one) that’s compatible with Alexa. Such an odd wish list haha but what can I say
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Crockpot is so convenient! I love it. My favorite meal is actually made in a crockpot. It’s just pork tenderloin, bbq sauce, and half a can of root beer, and oh man it’s DELICIOUS. Currently over here drooling just thinking about it.
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Yes!! I actually wrote about this in my most recent column. Living with the everyday complexities that SMA brings can make practicing gratitude challenging at times. My advice: gratitude is a choice, so it’s okay if you haven’t felt any reason to be grateful today. You can always choose to try again tomorrow. No pressure!
Here are 5 things I’m grateful for today…
1. Coffee 🙂
2. My doctor squeezing me into an appointment this morning because I still don’t feel well
3. The ability to work from home
4. Avocado butter because it makes me feel like I’m eating healthy AND gaining weight. Win-win
5. My PCAs who help foster a sense of independence from my parents
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DeAnn. I am so so sorry for your loss. Losing a service dog is incredibly heartbreaking, and my heart goes out to you. If you need a friend to talk to, I’m here.
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I love this post. 🙂 Also, what a cute picture!
I have two golden retrievers, but one is all white and the other is all black. We’ve had dogs my entire life and I couldn’t imagine life without one now. They’re more than just pets to me, they’re family. The black golden is my service dog, and she and I go everywhere together. The white golden is the family’s dog, and he’s the gentlest giant I’ve ever known.
Although I can’t do physical tasks like feeding and playing ball with them, I am still involved in other ways. I take them to the vet/groomer with my PCA, attach their leashes to my chair and go on walks, buy them toys, beds, etc.
There’s this awesome dog camera I have called Furbo, but it also launches out treats. And the best part about it is it’s all on an app on my phone. I can be anywhere, open the app, and tap a button to give them treats. It also allows you to talk to them. It’s great!
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First of all, another great column. Second of all, I too have been binge-watching Disney+ these days. Sorry not sorry?? 😂
Relaxation varies for me depending on the time of year (ie. I love unwinding by the beach— but not in the middle of winter.) Right now, I typically retreat to my room, turn on Christmas music and my Christmas tree, and read. It really helps me decompress when I’m feeling overwhelmed and restless.
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Another misconception I’ve experienced firsthand… unfortunately… is that I’ll never surmount to anything in my life because I’m disabled. I’ve always had this innate need to prove myself to others for this exact reason. People see a person in a wheelchair and automatically assume they’re incapable. It stings, for sure. But, hopefully by proving myself— through education and awareness— I can help dismantle this way of thinking.
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Such an informative podcast! I had heard about AveXis putting that trial on hold but wasn’t exactly sure why, so thank you for clarifying that.
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What DeAnn said! That is SO cool.
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That sounds delicious! I agree with the cookbook idea. Or a food blog 🙂
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How incredible, Mike! Thank you for sharing this with us. May you have continued improvements and become one step to standing each day— regardless of which treatment (Spinraza vs. Risdiplam) you choose. So crazy to think that, in 2020, we’ll have choices!
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I’m pretty sure I just did it wrong haha.
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Ah yes! I follow eden’s garden on instagram— that’s good to know. I tried CBD once and it made me sleepy… not sure why. I should probably shop around for one that works for me because I’ve heard great things about its effectiveness and chronic pain. Glad to hear it works well for your sister.
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Googling essential oils is information overload. Maybe I’ll just focus on peppermint oil for now and do some in-depth research. I’ll have to report back and let you know!
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Oh my gosh! I can’t imagine— that’s one way to look at the whole situation though haha. My friend once put peppermint oil in between my eyes because I had a bad headache, and just the potency of it burned my eyes sooo bad. I guess you’re not supposed to put it directly onto skin? Like you have to dilute it first?? I don’t know, that’s where I become confused.
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I understand what you’re saying though. To be honest, my PT eval results have pretty much remained the same since the day I started Spinraza. I’ve personally noticed differences, and my family/friends/doctors have said the same. Not sure why the numbers say otherwise. But, when you say you gage its effectiveness by how you handle your phone I totally get that!
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Best of luck to your brother, Olga! I’m happy to help whenever I can. 🙂
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Hi Olga. While there isn’t another drug like Spinraza on the market, has your brother tried albuterol syrup? I haven’t had enough firsthand experience with it to vouch for its effectiveness, but I know many people with SMA use it and experience a slight increase in their stamina. Perhaps a little boost in energy could help him until Risdiplam becomes available?
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I was in a steady decline too prior to receiving treatment. It has honestly been a lifesaver for me because, every time the drug begins to wear off and I feel weak again, I realize how reliant I am on Spinraza for my well-being. Do you have any inclination as to why you went almost back to baseline?
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Very much looking forward to that day. 🙂 Best of luck to you!
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That’s so awesome and makes me happy. Hope you have a great Thanksgiving Halsey!