Usually I keep my hands out so I can use my phone, unless the cold is getting to be too much for me.

This is why I stopped wearing coats years ago. I have a wheelchair poncho, but I can’t use my phone while I’m wearing it, so I don’t use it that much. I prefer to use some kind of cape like this: <font face=”inherit”>https://www.tartantweeds.co.uk/black-watch-tartan-womens-pure-wool-cape-13021-p.asp</font> I’ll take a little cold over being…

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St. Dennis is delightful, like Parks and Rec set in a hospital

Oh my gosh, I thought I was the only one! I LOVED The Pitt, and I was so confused about why such a stressful drama made me feel so cozy and comfortable. I’ve had mostly good experiences with hospitals, so my working hypothesis is that the medical realism made me feel like I was back in an environment where I could let other people take care of…

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Thanks Mike! I have a lot of thoughts, so apologies for how long this is.

I’d like to add that my approach isn’t just something that works for me. It’s an approach that was recommended by my therapist, who I was seeing specifically because I felt overwhelmed by negative thoughts and circumstances in my life. This approach is also…

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There’s a weird paradox I’ve discovered in my emotional life. When I’m feeling overwhelmed by negative emotions and thoughts, they only get stronger if I try to run away from them. If I just keep telling myself to stop worrying, my worry intensifies. On the other hand, if I make space for those emotions, if I validate myself, reassure…

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Thanks, Mike, that’s really helpful! What’s weird to me is that my wheelchair did have an elevator and a standing function, which were both approved from the start. I’m not complaining, it just seems random that I could get those, but not any kind of robotic arm.

I’m not sure anyone here can account for the nonsensical logic of insurance companies. Mine, for example, covered a $30k wheelchair, but not a $12k Obi (<font face=”inherit”>https://meetobi.com/?srsltid=AfmBOopvvO541_prDxcUobbp1LOzzOrr8pAc9LS0WvwVnICCqH6JZgJp</font>). I can speculate that the Obi was not considered a basic need, or that it is…

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In an ideal world, I’d love a Jaco. But my insurance won’t cover it.

It’s as simple as that. The problem is not the existing tech, but the systems for accessing it.

Happy Pride to you too!

I was going to join my church’s contingent at our little local parade, but we got rained out. ☹ I think they’ll reschedule for the fall.

Thanks for the reply! Yeah, the communication is tricky. Even when I’m sitting up and awake, I have a hard time pinpointing why it feels wrong and finding the words to explain that to someone else.

So glad I’m not the only one! Thanks for the advice, I’ll look into that.

I saw this one when I was doing research online, maybe I’ll give it a try. Thanks!

What BiPAP masks do you all use? I’ve been using nasal pillows for a few years. They’re not bad, but there’s definitely room for improvement. Sometimes they irritate the skin on the inside of my nostril. They have to be positioned very precisely, and it’s very draining to try to explain to a caregiver how to move them if they’re…

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Have you looked into Maryland at all? Higher cost of living, but one of the few warm blue states. My Medicaid hardly ever denies anything, and I have great doctors at Hopkins. On the flip side, they don’t cover round the clock caregivers, and it takes months (even years) to get hours approved.

Is this particular to your state? I’m in Maryland, and I had no problems getting Evrysdi covered by Medicaid.

You’ve probably also looked at this: https://www.evrysdi.com/financial-support/assistance-options.html

Preach!

Thanks for reminding me about the independent living centers, that’s exactly what I’m looking for!

Those sound like good strategies. I think that’s the sort of thing I want to say, I’m just not sure who to say it to. Two different social workers have told me that there are no programs that cover overnight care. So I haven’t even gotten a denial that I could appeal, I’ve just been told there is nothing I can apply for. I’m not quite…

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I’m happy living with my parents, I just want reassurance that once they get to your mom’s age, I will have a replacement and be able to stay in our house.

I know 13.5 hours/day wouldn’t be anywhere near enough for me. I need a good 10 hours of sleep a night, help eating all my meals, and it takes so long to do basic hygiene. I currently get…

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Exactly, I had an easy time during college because I lived at home with my parents.

Now I’m trying to figure out a plan for when my parents age out of doing my overnight care, and Medicaid provides zero support. So in order to stay in my own home, I have to find someone who is willing to handle my care with little or no pay. Really?!

I currently live with my parents, which is fine for now, but I’m trying to plan ahead for when they can’t cover my care anymore. My social worker told me that Maryland medicaid does not cover overnight PCA services. Apparently my only options are living with friends and family or assisted living. I’m so confused because I feel like I’m…

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Same here! I haven’t started it because I didn’t know when the book club would be. I’m in the middle of a few other books right now, so I’m not sure when I’ll get to it.

I love the idea of a book club, but I would personally find it really helpful to have a set date, so I can give myself a deadline for reading the book. I think it would…

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Hi Mark! Yes, Matter is a new system that connects devices to most major smart home systems, including Alexa and Smartthings. I think you would install the blinds on the Eve app, then upgrade to Matter, and from there you can add them to your existing system. That said, the instructions say that you need a Thread Border Router capable Home…

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I recently had the privilege of beta testing smart shades for Omnia Blinds. My handyman told me they were super easy to install, and I had no problems connecting them to HomeKit and upgrading them to Matter. I’ve only had them for a month, so I can’t comment on how they hold up long term, but so far they are working great. This is the first…

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If you can get a small group together, I’d be up for that!

Sorry, I can’t find the model I got.

I use a smart plug so I can turn it on and off with my phone – really easy to set up!

I got a towel warmer when I remodeled my bathroom last year. The one I have doesn’t make my towels noticeably hot (they don’t feel like they’re out of the dryer) – but it does stop them from feeling cold, which they used to. I really like it!

Thanks, everyone, for so many good suggestions! I’m sure I can figure out a good strategy from this list.

I don’t really know Santa Claus Is Coming to Town, but I do like laughing at A Year Without a Santa Claus. Especially since my uncle looks like the Heat Miser. 😆

So many great suggestions, thanks! I don’t think my chair has a usb plug, but I’ll check.

Good idea, thanks!

I’ve now officially reached the point where I can’t wear any layers except a single thin sleeve, or else it’s too hard for me to move my right arm. But that makes my right arm super cold. (I don’t really use my left arm, so I just keep a blanket over it.) I’m experimenting with a space heater, but can’t quite position it to warm my arm…

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We tried a bunch, but it’s the snickerdoodles (https://cookiesandcups.com/perfect-snickerdoodles) and sugar cookies with buttercream icing (my grandma’s recipe) that we still make every year.

I am also a huge fan of Christmas! The first Christmas of the pandemic, my mom and I had a two day extravaganza of baking cookies and watching movies. We loved the Grinch and Charlie Brown, but the Rankin & Bass specials are weird! I swear whoever wrote Rudolph was high. And the trauma of the Little Drummer Boy… Hey kids, want to hear…

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I’m not very experienced with advocacy, but for what it’s worth:

I don’t understand why it matters if you sound positive or like you’re complaining. You’re not navigating conflict with a loved one, you’re advocating for your basic human rights. My strategy would be to not worry too much about my tone and stick to the facts – this is what I…

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It’s going pretty well so far, but I think we’re starting to hit the slow season. I haven’t had enough guests to figure out the impact of advertising accessibility features. My guess is that since so few hosts list those features, being one of the only places marked as step-free is bound to attract more guests. But only time will tell.

My…

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I just sailed with CRAB for the first time a couple months ago! I’m not usually an outdoorsy person, but the setup worked really well for me. I now have them in my Airbnb guidebook.

Thank you! We bought the house from a family friend whose parents originally built it. Even though we didn’t design it, it’s the perfect layout, built into a hill so there are direct entrances into the upper and lower floors. We live on the upper floor and airbnb the lower level, and the two spaces are totally separate.

I hope it’s okay to share this here. My parents and I have been working on this for a long time, and we finally opened our Airbnb: https://airbnb.com/h/grey-havens

I have dreams of renovating the bathroom to make it fully accessible, but for now it’s got a detachable shower head and the entire place is step-free.

I don’t post a lot on here, but…

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For what it’s worth, I’ve been on birth control since I was 12 (now 28), and I’ve never regretted it. The few times I’ve had a period were very difficult. I needed to be lifted by a person (not a hoyer lift), or really two people, when I needed to change my pad – that task was often beyond the abilities of my aides in public school, so my…

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Most of them are pretty good, especially the further north you go. Most
places in the UK are fantastic. Paris has a great bus system. Rome
and Florence were a little trickier with all the cobblestones, but I
ended up rolling in the street and the drivers there are so used to not
following rules that they were totally cool with it.

I’ve had the privilege of traveling to Europe a few times and always found it surprisingly accessible, especially the UK. Websites are more likely to have detailed accessibility info. Attractions usually offer free entry for carers. Public transport is very accessible – on trains, wheelchair spaces are often in first class, so I get first…

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I have had the privilege of flying in and out of London 4 times, so I’m happy to help however I can!  Feel free to message me or ask me questions here.

It’s definitely possible to go to London, it’s just a question of how much time and money you want to put into it.  What medical equipment exactly do you need?  I’ve generally found the UK to be… Read more

I loved the title of your video.  I often find myself telling my parents, “Hey, I might want to be spontaneous tomorrow.”  If I try to actually be spontaneous, they’re usually busy, so I give them advance notice if there’s something I’m thinking about doing spur of the moment.  Even then, it’s usually not a big road trip, more often just a day out.

Or threaten to call the media (newspaper, tv, etc).  I’ve had occasional luck when insurance wants to avoid bad press.

It can definitely feel isolated sometimes.  I’m finally feeling ready to start doing some more public activities, as long as I’m wearing a mask (like movies, concerts, and live theater).  It’s definitely weird being the only person in a mask.  I kind of wish the pandemic had normalized masks, instead of everyone being in such a hurry to take… Read more

It’s funny, I wish I was more open, but I end up not asking for help a lot of the time.  I’m not ashamed, it’s just too much trouble to explain what I need.  So if I have someone who knows how to feed me, I don’t mind being fed in front of friends – but if someone offers me food or drink and I don’t have anyone ready to help me, I’ll just… Read more

Thanks!  I was actually looking for the rss feed specifically, but I found it myself.  Just in case it’s helpful for anyone else: https://feeds.soundcloud.com/users/soundcloud:users:337265504/sounds.rss

What is the rss url for the SMA News Podcast?  I can’t add it directly on the app I use (Castro).

Everything’s working for me.