Hey! Good to hear from you despite the troubles you’re having. Obviously I can’t give medical advice and only speak from my own experience but I have had similar issues with leakage of my g-tube. Mine isn’t G/J, so yours might be more complex but for me there are a few reasons for drainage/leakage.

It’s important to have the correct tube…

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Happy New Year!  

Is there anything you’re looking forward to this year? As for myself, I’ve got no big plans.  

What do you want to see in the forums for content? Are there any video topics you’d like me to cover? All ears, so let us know. We appreciate you all, and it’s a privilege to have you here with us. 

Hope everyone is enjoying the season! I’m excited, for Christmas I got an auto heat press! Not for everyone I know, but I’m anxious to try it out. Even though it’s automatic I’ll feel more comfortable using it while someone’s around to lend a hand. Then I’ll gauge to what extent I can do it myself (with Jaco.)  

Has anyone used this type… Read more

Here I thought CFSS was a national thing making its debut in Minnesota. Other than what Google says no one can tell me much about it. Sounds great on paper but something about it gives me an icky feeling.

Do you have to go through your county for services? What’s the process like?

35 hours a week sounds ridiculous. That’s just 5 hours a…

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There’s no disability guidebook, but sometimes I wish there was. I’ve had to figure things out throughout my life, sometimes with little to no guidance. Lately, I feel like I’m floundering. Not only am I still struggling with the process of filling in gaps in my caregiver schedule, but I’m also amid a mandated change with my service providers.… Read more

Sorry your experience has been so frustrating. They do seem to call quite soon for refills. I have my theories on reasoning, but it is what it is. Unfortunately, I believe they have exclusive distribution rights for a specified time period. For how long I’m not positive. I’m wondering if it will be difficult for smaller pharmacies to…

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Thanks for the input. PowerPoint presentation sounds amazing, but I can’t see myself putting in that much effort when I barely can get people to show up. How do you present it to your caregivers?

Since technically I go through an agency their agreement is through them. Atm, I find the people and they do the paperwork. That could be…

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My process is a lot similar, shadow twice with more hands on the second time. When they go it alone I have someone here for backup. It’s funny how often our gut instinct is correct. Even so I’m apt to give everyone the benefit of the doubt. I’m always apprehensive not knowing if I’ll ever be comfortable again, but it usually works…

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It was cute. Watched it with Mom over the weekend. What’s the sequel?

Finally, two prospects showed up for their PCA interviews. Letting strangers into my life is a nerve-wracking process in and of itself not to mention what the hiring process does to said nerves. Knowing the probability of both candidates working out, I offered each of them the same position. Playing with fire? Maybe, but as suspected one… Read more

I’ve tried them. On a sale of course. Mixed reviews. Mom likes putting them on me more than I like wearing them. I do like supporting an inclusive brand but the sticker shock can be hard to get past. Quality is decent. Have you tried other brands?

Ooh! Thanks, I’m gonna check it out.

Yes, a towel warmer sounds divine. Any specific brand? If you get one I definitely want to know what you think of it.

Sorry to hear about the issues with the ABLE account transfer. Things like that are just a pain. 3D printing intrigues me, but not enough to delve into it. I bought a cool fidget gadget from the farmers market a kid had made. He had some fun things. What kind of things have you made? I’ve been tempted to look for a joystick knob on Etsy.

Yes F3, I got in in 2020, so the countdown is on. It’s not the worst chair in the world but I’ve never liked it either. It’s not one thing I can pinpoint, rather lots of little nuances I don’t care for. What is it you’re not fond of? You struggled with seating didn’t you? There are pieces I hope I can carry over to the next chair but if…

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That one is on my list to check into along with the Quantum. After not loving the front or mid wheel drive either I think I have to go back to rear wheel drive. What don’t you like about fwd or mwd? I have my reasons but would love to hear yours.

Yeah, I probably shouldn’t stress over a charger. Totally get what you speak of. All these rules in place to save money, then situations arise like your joystick and it comes back to bite them. My last chair needed several maintenance parts like tires and batteries, so I had all of it done to have a reliable backup before I got my new chair. …

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Even though Thanksgiving is late this year, it still snuck up on me. Happy Thanksgiving to those who celebrate. That means Black Friday, Small Business Saturday and Cyber Monday are upon us. 

I’m trying to hold back this year, but curious, are there any must-haves on your list? Anything on your wish list that would make life… Read more

I guess my hang-up is that it’s not totally broken yet. That and I feel like I’m probably switching brands when I go for a new chair, so it seems silly to get a new charger I’d only be using for a year or so. I’ve never had a new chair denied, have you?

Living in a more rural area we don’t have as many delivery options. What’s your go-to service? I do enjoy Walmart+. Also Amazon Prime. If free delivery to store is an option and I don’t meet the minimum for free home delivery, I’ll do that and have a friend or family pick it up. I’m frugal so avoid fees if possible.

Do you have issues…

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Lately, the charger for my wheelchair has been giving me trouble. I think the cord has been wrapped around it one too many times.  

Here’s my dilemma, do I go through insurance to get a brand-new charger when I’m planning on getting a different chair in a year or so?  

I’m sure I could find a decent used one but then I’d be paying… Read more

Ooh, sounds like something I would nip in the bud asap. It’s probably not intentional, but seems like they’re taking advantage of your kindheartedness. Over the years I’m becoming more inclined to do what makes my life easier versus what others prefer. They might balk a little at first but unless it’s something unreasonable most…

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Although I understand the need for security when working online, some of the extra measures sites require are a hassle and physically taxing. This is especially true when I’m working from my PC and the site requires a security code to be texted. It’s tough to balance the two, and sometimes, there are even time constraints. 

Do you have any… Read more

Cough assist is a machine that aides in coughing. It will push air in and pull air out at a pressure programmed into the device. It can be extremely helpful for those of us with weakened respiratory function.

No advice, just hope everything went well and you have a speedy recovery.

Minnesota native here. As such I don’t know how difficult it is to move to the state and do the buy-in process. Overall my healthcare experience has been positive, however a lot depends on if you live in a bigger city versus a rural area. Rural living is tough. Lack of transportation, caregivers and limited knowledge in specialized care…

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I lived in a rural area, so trick or treating was limited to a few nearby neighbors. Because everyone knew everyone, it was safe back then to do homemade treats. One neighbor made the best popcorn balls. We always made a point to stop there. That was our one stop the year of the infamous Halloween blizzard. The weather was brutal but we…

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If you don’t mind my asking @kevin-schaefer , what other changes have you made and what are the differences you’ve noticed?

Do you have any passion projects or events to look forward to? Sometimes that sparks a little something. I always joke I hibernate from October through April. Honestly I’m just trying my best to be okay with hibernation mode. It helps me to make my space comfortable. Like Kip, I have my heaters and warm drinks stockpiled and ready to…

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It’s fun to see Halloween becoming a more inclusive holiday from my childhood days.  Now there are things like Trunk-or-Treats where everything is at one location.  The other day I even learned of a Witch Swap.  That’s where if your kid has food sensitivities they can still go trick-or-treating.  They can leave the bag of candy they… Read more

It’s so nice when people come over and lend a hand. I’m trying my best not to ask people to do things when they stop by, though.  

How do you balance asking for favors and just hanging out?

I’ve never been to one so love getting your insight. Glad to hear you could get your chair fixed. Did they do it on the spot or did you have to schedule it? Any product stand outs?

Do you know when the Dune series is expected to come out?

Traveling isn’t my thing.  Kudos to those who do take on the challenge.  Regardless of your endeavors, the newest care package from Cure SMA may be useful.  Although it’s geared toward traveling, I feel like the items offered would come in handy for myself even though I don’t plan on setting foot on an airplane anytime soon.  What I don’t… Read more

Agree completely! It seemed like there was a lot of potential but never quite got there.

For me, it was a long week filled with seemingly pointless appointments. However, they weren’t pointless. My ingrown toenail was caught in time not to need invasive treatment or antibiotics. I also established care with a new primary physician who seems receptive. Time will tell. Now at least I can message them through MyChart without playing… Read more

We’d love a review!

Thanks!

I liked Vikings.

Thanks for sharing!

Growing up, Dad was Mr. Fixit when it came to my chair. We saved everything and made use of it all one way or another, even on non-chair-related projects. Old tires became wagon wheels. An old battery may not be good enough to power my chair, but it might be good enough for something. An armrest bracket worked great for a feeding tube… Read more

Good choices. I haven’t seen Monk, but I’m guessing I could get into it. What platform do you get them on? As far as gaming, do you find it easier playing on your phone vs Switch?

Just the nudge I needed. You kind of talked me into Netflix for at least a few months. I got in on their $6.99 promo so I think that’s doable for me. Both those docs sound interesting. Might have to catch up on Bridgerton first. Have you seen Squid Games? 👍 👎 ?

Thanks! Haven’t heard of that brand. I’ll have to scope it out. Sorry about the diabetes diagnosis. Are you adjusting well to the lifestyle changes? It’s probably wise to eat healthier regardless. I know I could do better.

Even though I get my main nutrition through a feeding tube I do “cheat” and indulge in a snack or two. 

With my physical limitations, I struggle to find options that are not only easy but also affordable and somewhat healthy. Because of my swallowing issues, I avoid nuts and popcorn. One of my favorites is hummus with tortilla… Read more

Maybe it’ll be a nice long fall. I’m really open to any genre of music although I usually just gravitate to pop. What streaming services do you get the most out of? I don’t have Netflix atm but have been tempted. So far my Max promo has been my favorite sine they carry my TLC shows. I probably wouldn’t pay full price so I’ll binge while I got it.

Hibernation season is fast approaching for me. Since I’ll be stuck inside, I’ll be looking for things to keep me entertained.  

What are you watching? Reading? Listening to? Is there anything you’re looking forward to?

Portable ramps are a great suggestion. We used one to access a craft sale in someone’s shop that had a step. It seems like there are a lot of ramp options available too. Do you have any recommendations?

I would tell you if I could actually get prospects to show up for their interviews, lol. Seriously though, I go more off the vibe than have specific questions. Usually I go over what I’m asking of them, and question if they’ve done it before. Usually I can tell if they’ll be comfortable or not right away. If they’re interested I’ll have…

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My recent video was inspired by a simple question posed on social media by our local radio station. They asked, “Growing up, what did your friends’ houses have that yours didn’t?” As you might imagine, the most common answers differed greatly from my initial reaction.  What would your response be? 

It’s always been challenging navigating… Read more