[alyssa-silva]

Welcome, Lance! I’m a moderator here, along with @deann-r and @kevin-schaefer. Looking forward to getting to know you better. Did you teach general mathematics or did you focus on a specific subject? Math was always my favorite subject in school.

[alyssa-silva]

I go back and forth with getting a tattoo, but I do have a scar! That’s a cool idea. If I think of anything creative, I’ll let you know. 😆

[alyssa-silva]

Do you have delivery services like DoorDash in your area? I know you said it’s rural where you live. The problem I have with DoorDash and other delivery services is that they upcharge everything. Compounded with fees and tips, it’s so expensive. Many disabled folks don’t have the luxury of that, so it isn’t always the best option. I only use the services occasionally, though I’d definitely benefit from using them more frequently if they were more affordable. It’s super convenient.

I definitely thought the changes during the pandemic (i.e. takeout at every restaurant, curbside delivery) would be here to stay. But I understand that businesses have to make decisions based on their bottom line. Just unfortunate that it’s sometimes at the expense of accessibility and inclusivity for the disabled.

[alyssa-silva]

Sending you lots of strength. 💛 Sorry to hear you’re in this situation. I hope someone can point you in the right direction.

[alyssa-silva]

I’m not that tech-savvy, so I don’t think you’d want my help! Typically, Google answers all my questions. But yes, I agree that the more advanced technology gets, the harder it is to keep up with it. That might just be my lack of technology skills, though. 😆

[alyssa-silva]

Hi Grant. Welcome to the forums! I have never used ginseng but have heard of it before. What are its benefits?

[alyssa-silva]

Thanks for the introduction! Of course, we’ve known each other for some time through following each other on Instagram. But it’s always nice to get a refresher. 🙂 What does your role entail as the co-chair of the North Jersey chapter?

[alyssa-silva]

That’s great news! Do you have a doctor who knows these two medications? They should be able to tell you the risks involved so there are no surprises for you. Like Deann said, these medications affect everyone differently, so it’s hard to answer your question. I’ve heard GI issues are a big side effect of Evrysdi, and because I have enough GI issues to begin with, I’m sticking to Spinraza.

[alyssa-silva]

Thank you! I’m coming up on seven years of writing for SMA News Today. Can’t believe how quickly time passes.

It’s been quite a while since I’ve studied algebra, but I do remember enjoying it. I loved solving puzzles, and that’s how algebra felt to me. 🙂 Looking forward to having you here, Lance. Thanks for joining us.

[alyssa-silva]

I’ve been wanting to try this! What did you use to tie the wagon to your chair? Was it secure?

[alyssa-silva]

Eye spy! That’s such a good/easy game for me to play with them. I’m so far removed from my childhood that I don’t remember all these games.

I’ve been trying to offer them wheelchair rides, but they’re afraid lol. When my cousins were little, I was a “bus driver,” and I’d drive them to imaginary places in my wheelchair. They loved it. I have to keep gently trying with my niece and nephews. I think they’ll eventually warm up to the idea.

[alyssa-silva]

These are so creative!! Thank you 🙂

[alyssa-silva]

Great ideas, Mike. I also put a little extra pressure on myself when I can’t physically do the things they enjoy. After reading what you had to say, I realized I’m more involved than I think. I go to their sports games, read to them, take them shopping with their grandma (my mom), etc. Sometimes, I just feel like I’m not doing enough!

[alyssa-silva]

Interesting. Thank you for sharing. I haven’t heard of either of those drugs. Looking at the article @lisa-karczewski shared, I wonder if it’s for stronger SMA types? I have type one and I see it wasn’t part of the study.

[alyssa-silva]

Is Cuban coffee different from other kinds of coffee? I was just watching a show yesterday, and the person was raving about Cuban coffee. You’ve caught my interest.

[alyssa-silva]

I’ve been hearing more and more about ginseng recently. I’ve never tried it, but I agree with your disclaimer. I never try anything without consulting a doctor first. Sunny days definitely help me, too. There’s just been so little sun where I live for the past few months.

[alyssa-silva]

We only have DoorDash and Uber Eats in my area as far as I know. I stick to DoorDash mainly because they don’t have trouble finding my house. I don’t live in a secluded area, but my house isn’t on many navigational systems. It’s so strange. My address is number 7, but people deliver things to 70 all the time. 🤷🏻‍♀️

[alyssa-silva]

Hey, Tyler! I somehow missed your response to this post. Sorry about that!

Thank you so much for these tips. I’m excited to try the built-in system when my voice feels a little stronger. Right now, I love using ChatGPT for things that don’t require my unique style of writing. It saves me so much time and energy. I hadn’t thought of using Grammarly with my voice, though. That’s a really smart idea. I use it for typing, but I’m sure it would be even more useful if I used voice to text. Thanks again. 🙂

[alyssa-silva]

Oof. Not a fun transition. Because I have a full SMA team of doctors in Boston, I’m not too concerned with my PCP. If you have specialists, definitely let your new doctor know. That way, they can communicate with each other if needed while he or she is learning your case.

Another tip I have is to write everything you want to say in the weeks before your first appointment. Otherwise, there’s always something you’ll forget.

When are you meeting your new doctor?

[alyssa-silva]

I have similar ways of recharging, too. The beach is my favorite place to refuel. Unfortunately, I live in New England, where it’s too cold to sit by the ocean half the year, but I live for those moments in the spring and summer. Sometimes, though, I’m just too tired to get there. 🤪

[alyssa-silva]

I absolutely understand where you’re coming from. I feel this. Hang in there. if you ever need to vent, we’re here.

[alyssa-silva]

So so true. And I’d love a facial if I didn’t have a tube taped to the right side of my face. 😆 I wonder if I could get half a facial for half the price hahahaha.

[alyssa-silva]

I know what you mean. It absolutely can feel that way. Do you have any ways to recharge?

[alyssa-silva]

I feel ya. My nonprofit is planning some in-person events for the first time since COVID, and we’re a little rusty. 😅 We’re slowly dipping our toes into the water again, and it’s really exciting!