A few weeks ago, my brother took me for a ride in his convertible. Being lifted in and out was honestly kind of terrifying, but the ride was quite nice.

I’ll be joining at least the one on Monday night. Looking forward to seeing some familiar faces, and meeting some new people!

They definitely seem like something that would be worth trying. I can’t use them because of my trach, but you’ll have to let me know what you think if you try it.

Alyssa, that’s nothing! One time  mine broke down at the bottom of a very large hill while on vacation. My family had to take turns pushing it back up the hill to the hotel.

I’ve never used one, but have you ever seen those round neck float things? They seem pretty popular. It would keep your head above water and allow to put the rest of your body in the water.

When it breaks down while simply driving across the living room. I started having that problem towards the end with my last chair. Fortunately, I already had a new ordered and on the way. It was becoming a serious problem that made leaving the house hazardous. I never knew when it was going to suddenly die. I can also understand putting it off.… Read more

Since I don’t take Spinraza, it’s an easy decision for me. I intend to start taking Risdiplam as soon as possible. But I can see why this poses a dilemma for you. What you’re doing works for you, but it’s hard not to wonder if something else might be better. It certainly wouldn’t hurt to wait and see how effective Risdiplam is for other adults… Read more

Pets are definitely a popular topic this week! Rey is adorable and I think you’re doing an amazing job caring for her! She is well loved!

Too much screen time definitely has a negative impact on me. Like you, I’m definitely spending more time on my devices now that I’m at home so much. But this week I’ve decided to commit to spending less time on social media, at least for a while. The events of the past few months and weeks has caused my feed to be filled with a lot of hate and… Read more

Fantastic news for both of you! I’m sure it’ll be very beneficial. I don’t know tons about these arms, but I’m sure Kevin and Ryan would both have great tips since they’ve had theirs for quite a while.

I absolutely love working outside!

I believe we’re currently in stage 3/5 of reopening here. Unfortunately the number of cases is starting to spike again. I won’t be getting back to anything normal for a while yet. There’s not enough improvement for me to be comfortable with it.

Honestly, I often find that fresh air and sunshine the perfect solution. There’s something so restorative about being outside on a nice day. Somehow, it’s both relaxing and energizing.

I think those are just called surgical masks. I’m not sure if they make anything thinner than that.

What type of mask was it? Some are easier to breathe through than others. I just bought a reusable one, but haven’t worn it yet. The fabric is really light so I’m hoping I won’t have problems with it.

It’s certainly fine to do things that disabled friends can’t do from time to time. We understand that there are some things we just can’t do. However, if you’re planning something that you want a disabled friend to be able participate in, just ask them what they need. I don’t consider that to be calling unnecessary attention to my… Read more

Mystery boxes can be really fun! I haven’t tried many but just recently got one from Half Price Books. You get to choose a genre, and a staff member will pick out 5 books for you. They’re $10 unless you want them in excellent condition. I got a sci-fi box for myself and a mystery box for my grandma. It was really fun to see what they picked… Read more

Working from home is not new to me, but I do hope it becomes more widely accepted. Some people work very well from home at it clearly has potential benefits for the disabled community.

I don’t know how long I’ll keep isolating for, but I won’t be rejoining the world just yet. I’m going to see how everything goes and start slowing picking some places to go once I see that things are continuing to improve. And I’ll be wearing a mask everywhere that I go. My mom found some that will cover both my face and my trach.

I totally echo Rachel’s! What I wouldn’t give to take a shower in private! Another one is the ability to do things that a lot of people don’t actually enjoy doing like housework. I would love to be able to do my own laundry. Or there are times where I look at my bedroom floor and realize that it News seems vacuumed, but I don’t want to… Read more

I haven’t heard of flip cup. Glad you all had fun!

I’m really not a fan of mask, but I’m not really comfortable leaving my house without one. I feel like a lot people are taking protective measures, so I need to make sure I’m taking measures to protect myself. There’s a local purse company that is using extra material to make masks. I’m going to get one so that I at least have a pretty one. I… Read more

How lovely that would be. I hate having to ask people to move for me to squeeze through. However, I will also not be going to any restaurants any time soon. It’d be nice if some places decided to keep things that way.

I’m also scheduling my first telehealth call. It will be interesting to see how it goes. My doctors generally try to avoid having me come in to keep me away from germs. This has good potential to allow doctors to see patients with exposing them to the wide variety of germs that try to grow in hospitals and doctors’ offices.

Brianna, I absolutely love this one! You’ve put these feeling into words so beautifully! I also have, as you called it, “the superpower of empathy.” I feel other peoples’ feelings with an intensity that anyone who doesn’t experience it can’t understand. I also use this “superpower” to gage when and how I will ask for things. I’ll try to direct… Read more

Fortunately, I already had a good home therapy routine in place. It’s all passive range of motion. Since I’m not going to therapy, I’m doing my home routine more often. However I am starting to miss some of the adaptive exercise equipment that I don’t have access to at home.

When it comes to my caregivers, I tend to avoid discussing politics with people that I know have a very different opinion. However, if they bring up a topic that is particularly important to me, I will respectfully share my views. (For example, if someone supports a healthcare policy change that would negatively affect the disabled… Read more

I love the Switch! My brother has one and it is extremely SMA friendly. I used to play animal crossing on the Wii but haven’t tried it on the Switch. My brother has been playing it pretty nonstop, and I’ve been watching him some. The thing that’s great about the Switch is that the remotes are extremely light, and the buttons are very easy to… Read more

Staying in your chair is definitely exciting! Enjoy it! We normally do an Easter meal at our house, but we obviously won’t be doing that this year. I think we’re going to do a zoom call with my grandma and my mom’s siblings. My brother downloaded some new games on switch that we can all play by logging in with our phones, so we might try that.

We definitely have some amazing writers on all of our sites! It’s always fun to read the stories and experiences that everyone shares!

I have to admit I’m a bit disappointed. I’ve had my hope for receiving a treatment dashed once so I’ve been trying not to get my hopes up to much, but this is still a bummer. I understand why they’re doing it, but don’t really understand why they need quite that much time for it.

Alyssa, I should probably start doing that. 🤯

We are definitely being cautious about everything that comes into our house right now. We’re spraying every box with Lysol, and letting it sit in the foyer for a day before opening it. Then we spray the contents with Lysol. Basically just using a ridiculous amount of Lysol.

I also love being creative! I’m getting back into my coloring books lately. I’ve fallen out of the habit and I miss it. I’ve also been spending a lot of time watching movies and playing games with my family. We’re all very close anyway, but we’re enjoying the opportunity to spend more time together having fun.

Alyssa, this is so beautiful! It’s certainly discouraging to see that people don’t take this seriously, but I’m glad you’ve chosen not to be bitter. Love is such a powerful thing that can truly change the world for the better. (Also, I have no idea what day it is anymore).

I’ve never had a service dog, but I’ve always had a connection with dogs. I love having them. I’m so glad you have such wonderful memories of both of your service dogs. I hope you make many more with your next companion.

Brianna, what a bummer that you can’t really celebrate! My brother is in a similar situation. He’s graduating high school and there is talk of the entire ceremony being cancelled. I wish I had some ideas for you. I guess you could always bake a cake to share with your parents? It’s not fancy, but you really can’t go wrong with cake.

DeAnn, these are awesome ideas! Might have to steal some of these! We’ve been FaceTiming my grandma. We decided that we can play board games this way and played Life last night.

I mostly use mine for music. (That’s actually what I’m doing right now.) But I also like using her as my alarm. You can set one time alarms or reoccurring ones. And she right by my closet so when I pick out my clothes in the morning I sometimes ask her what the weather is so that I know how to dress. And I sometimes use her for reminders. She… Read more

Crystal, that’s awesome that you’re so close to your brother! It’s great to have someone that you connect with like that.

I love the idea of gathering the good things to share, and I loved reading the responses you got! Luckily, I had a really good thing happen today. As you know, the fundraiser I was working on had to be cancelled, but we were able to convert part of it to an online auction. Today was the last day for it, and we ended up raising nearly… Read more

I can definitely see why that would be a concern. I hope you’re able to bring them back soon!

One of my nurses was planning to take some time off right now anyway, but the other one is still coming. This is her only job, and she’s being cautious outside of work to protect both me and her elderly parents. Fortunately, my parents are also able to take over completely if needed, but it’s still good for them to have a break. Hopefully it… Read more

I’m a life long Apple user. I’m also getting to the point where I know I’ll have to get a new phone soon, but I really don’t want to. Phones – regardless of brand – have all gotten so big! Between my weak muscles and small hands, they just aren’t great options. But my phone is starting to get glitchy. I’ve been holding out hope that Apple… Read more

Alyssa, go for it! I’ve gotten pretty good at this fundraising thing, so I’m happy to help out!

Thank DeAnn! We’re disappointed to have to cancel it after everyone worked so hard on it, but we’re making the most of the situation with the online auction we put together over the weekend. And I still loved getting to be a part of it all!

These are great ideas! The local library has closed for now, but I luckily have a whole stack of books waiting to be read. And getting some fresh sounds wonderful. The weather is gradually improving (at least most of the time. Weather is very unpredictable in Indiana), so I’m hoping to be able to read some of those books on the back porch. I’d… Read more

Like Alyssa, I still have my nurses and some family and friends coming over as long as they are feeling well. I’m being particular about where I will or won’t go, but so many things have closed that there’s not really a whole lot of anywhere to go. We’ll see how long it takes before I go stir crazy…

For me, the fact that it’s an oral medication is huge factor! Spinal injections are out of the question for me, but I shouldn’t have any problems with an oral medication. I can just put it through my feeding tube (and therefore also don’t have to worry if it tastes bad). The other big factor in my decision to pursue it is that it doesn’t seem… Read more

I am fully intending to start on Risdiplam as soon as possible. My doctors are not anticipating any problems getting it prescribed for me. (Knock on wood.) My hospital is compiling a list of patients who weren’t able to receive Spinraza to get them on Risdiplam quickly. It’s not a long list, but I am on it. So far, I really haven’t heard any… Read more