A while back I actually made a list of these. I wrote down things that I miss being able to do and I kept going until I couldn’t think of any more for a few minutes.

https://blakewatson.com/journal/things-i-miss/

Yeah, The Pitt was great. Also, love ER. I rewatched that one a few years back. I thought The Resident was decent as was The Good Doctor. House is great. Royal Pains is absolutely ridiculous but kind of funny. The ER style is probably my favorite. So yeah, The Pitt is right up there with it and feels like a modern take on it. Can’t wait for season two.

I feel really guilty about this, but I bought a font. 😅 It was a restoration of a classic typewriter font from the 60s. And I’m a sucker for those types of fonts. Love to use them when I’m writing.

I would imagine that research will continue if for no other reason than because of how much money they can make off of drugs that treat SMA. Anyway, it’s possible that there could be less research or that funding for research could come from different places than it does currently, but I wouldn’t really worry about it too much. Not that you…

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What!? I had no idea this happened. Oh man, what a blow.

I like what Chris Young is doing in his old age. He is many episodes into a podcast on YouTube called Contemplating Life. There is a lot of reminiscing, funny stories, and interesting tidbits. I haven’t talked to him personally, but I’d guess this series is as much for him as anyone watching. I’m the kind of person to bury myself in projects…

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Yeah, I read his first book and wrote a review on it a couple of years ago. https://blakewatson.com/journal/sma-in-fiction-the-first-thing-about-you/

Looks like Chaz Hayden (author with SMA) has a new book out! https://www.chazhayden.com/diet-soda-club

Different states have different policies. That said, as I understand it, the general spirit of home and community-based services is to allow us to be able to stay at home, rather than go into a nursing home or care institution of some sort. That’s a federal level thing, so every state is required to have some kind of program that can meet…

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If you are in the U.S. and on SSI, there is a loophole by which you can earn more income than the listed threshold for your state. It’s called the 1619(b) Individualized Threshold. This article has an explanation of it (scroll down to the heading, “Establishing a Higher, “Individualized” Eligibility Threshold for…

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Yay! I always get super inspired by these stories. Yes I used the i-word. Sue me. Last year I ended up buying a t-shirt from Janelle’s Cute Loot Arts.

This is my new favorite acronym. I don’t even know what the rest of your comment says yet because I felt compelled to hit the reply button as soon as I saw that acronym. chefskiss

We have quite a few gamers over in the SMA Chat Discord. Not sure if I’m allowed to drop links in here or not but you can find it by going to the SMA subreddit.

I’m curious about how you make this work. Most potential PCA’s I talk to are looking for full time hours. And when I do have part-time positions, people either don’t take them seriously or they end up working other jobs in addition to mine such that they are not available for filling in for others.

I usually look through the applications for people I’m interested in interviewing via Zoom. Then if I’m ready to proceed with someone I invite them to my house to meet me in person. After that I get them hired on.

We have an admin area. It helps us sort through the applications we get and is pretty useful for that. But the quality of applications is pretty low. Most of our traffic comes from Indeed.

I have this problem and it’s super annoying. I tried to use other job sites like Snagajob, for example, but they kicked me off because I’m not a company.

Indeed has been my only option and it kinda sucks. I’m even sponsoring my posts. But still don’t get very good applications.

My brother and I put this little hiring site together.…

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Oh wow, I would evidently have PTSD in hurricane season too if a tree went through my house!

Yeah, it’s really sad how almost anything we do requires power. But, to that end, I did get a very large capacity power bank so that we could charge devices and not feel guilty about using them for fun.

Nope, all the food went bad unfortunately lol.

Yeah, that sounds rough! A generator is definitely a good idea. We will probably try again with one (the last one broke), but we might be moving in the next year or two so not looking to make a big investment like that just yet.

YES, my power goes out all the time. Sometimes for no apparent reason. It’s gotten a little better lately I guess but…

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I recently went through a four-day power outage. It was pretty rough. I think four days is about the limit for me. After that, I’d start having serious problems.

I wrote a little something about the experience. The fragile nature of my life’s work

Afterward, I raided Amazon for some preparedness stuff:

• Batteries
• LED lanterns
• Battery-powered fan
• Cooler…

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Haha, that’s understandable. All I’ll say is I know that it helps me… it’s just a matter of finding out if my doctors would agree. 😅

I tried it, but it didn’t do anything for me. Interested in trying it again. Also my state recently approved medical marijuana. But I haven’t worked up than nerve to ask my doctors about it yet lol.

I experience leg pain daily but mostly have it under control with non-narcotic pain meds.

@Kevin Schaefer The new forums look great! Running pretty slowly though. I’m not sure what yall’s tech situation is but feels like it needs a beefier server. I’m seeing 30+ second load times on most pages.

Yay! Can’t wait to check it out.

@drunge I advertise on Indeed. Even running a free/unsponsored ad can get pull in some applications. But I usually try to throw some money at it for better performance, because the position tends to attract a lot of low-quality applicants, as you’ve mentioned. To be honest, it can get pretty costly running paid ads. But yeah I really don’t… Read more

@drunge Ok yeah I figured you would’ve had to have been rolled into the hall. I nearly had the same setup in a dorm before I lucked out with the apartment.

Of course on a day I had to give a presentation.

Lol, yup classic timing, as expected.

Yeah MSU has a sprawling campus. Weather was a problem at times and just the amount of traveling in… Read more

@drunge It was kind of a given that I was going to attend Mississippi State—much of my family went there and at the time I still cared about sports (I don’t now). So my only consideration was whether to go to my local community college first. But I decided to go straight into university.

Yeah weather played a big part. I was usually allowed… Read more

My brother and I recently made a web app for recruiting and hiring caregivers. I did a little writeup about it.

https://blakewatson.com/journal/a-home-cooked-app-for-hiring-personal-caregivers/

I’m curious what tools (technical or otherwise) other people use for this sort of thing.

This is gonna sound weird but I find myself avoiding these because if I do listen in I relate so much that I’m overwhelmed with empathy and I want to immediately contact people so I can tell them how cool they are.

This happened to me a while back on Kevin’s podcast when he interviewed Chaz Hayden. I was immediately on Twitter talking to… Read more

@drunge I lucked out and had an on-campus apartment that was designated for married couples and grad students. It was nice and quiet but still connected to my university’s extensive sidewalk system. And I had an automatic door opener installed so that I could come and go on my own for the first time ever.

When my brother joined me a few years… Read more

Yeah finding caregivers was probably the toughest thing. I went to a school about three hours from home so having reliable PCAs was critical. PCAs are a high-turnover job as it is but it was made even more difficult because of living at home during summers—juggling people in two cities.

But it was all worth it. Going to college was a great… Read more

Oh, I do have one tip. If you can afford to take advantage of it, many services that have recurring monthly subscriptions typically offer annual ones at a 1 or 2-month discount. It’s a steeper up front cost but results in pretty nice savings.

I have a lot of monthly services because of my profession and hobbies, so not sure how well this advice… Read more

I’m not a super frugal person but I have noticed the same phenomenon—stuff that’s easy for me is more expensive. I still buy it anyway, though. But yeah it’s frustrating at times.

I do try to make sure I have some money left after bills and groceries and such so I can put some in savings. For anyone on SSI, ABLE accounts are good for this… Read more

I’ve had this page open in a browser tab all day trying to think of how to reply and waiting for a good opportunity to do it in between work.

I’m of two minds on this. While I think this is a huge problem of mine, I also think I’m pretty good at dealing with it. Oftentimes I feel like I am pretty open about the challenges I’m facing—I talk… Read more

I used to be active-ish on Twitter but after Elon revoked access from third-party apps I switched over to Mastodon. I’m at https://social.lol/@bw if anyone happens to be on Mastodon too.

It’s not strictly social media but I enjoy following you guys (the SMA News Today crew). I know we hate the I-word sometimes but I’m genuinely inspired by my SMA peeps who are publishing articles and videos and creating content in general.

You guys have written some articles and made videos that had me chuckling along knowingly and some that… Read more

My mother was able to keep her insurance when she retired and still keeps me on it. I’m not sure about the details but I could ask.

There is a web developer meetup. I’ve gone to it a couple of times. I need to find some other stuff to get involved in.

Yeah, like you, some days I’m just like whatever it’s fiiiinnneee. Other times I’m like [insert All by Myself chorus here]. 😆

Discord is a social media platform (I guess) that operates similarly to a chat room. People create “servers” (ie, groups) that people can join and each server has a number of “channels” (ie, rooms) that people can chat in. It’s kind of like a discussion forum but optimized for realtime communication instead of asynchronous communication (like in… Read more

I used to be. Last year I made it a goal to not pay for any dating apps (at the time I had a few subs). So I dropped those. Then I just stopped checking them altogether.

I guess I was hoping that, if I was going to meet someone online, I could meet them in a place where I’m already active around people with common interests (like Discord, say)… Read more

No I def need to get out more. I made it a goal for 2023 to be more social. Not doing as well as I wanted to. I have hosted 2 SMA meetups on Discord, which is something I wanted to start doing since Cure SMA dropped the ball.

Still would love for you guys to do some on Zoom!

Most times I’m fine throwing myself into work, projects, or writing. But on occasion those things aren’t enough and I feel a bit lonely and wistful, wondering if there’s someone out there for me and if she feels the same way I do right now.

Not looking for advice per se, just sort of posting as a form of therapy I guess. 🙂