ryan-berhar-2
Forum Replies Created
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Is there a particular reason you haven’t had friends do the “heavy caregiving stuff”? Or has it just not worked out that way? In my experience, those are the people I’m most comfortable with.
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Maybe I’m a little unusual this way, but I don’t care about how my disability changes people’s perception of me. People can think whatever they want, and I’m not going to go out of my way to prove some point. I only concern myself with things I can control. What I do care about is how people perceive my character, which is something I can control. Basically, I do my best to live a life that I’m satisfied with, and let the rest of the chips fall where they may. If people have false perceptions, that’s on them. I’m confident and comfortable with who I am and the image I project.
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Honestly, there are so many separate issues here that I’m finding it hard to react.
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Ironically, I sort of just referenced this on the chores topic, but if anything, I fall on the other end of the spectrum. The battle for me isn’t avoiding burnout, it’s finding the motivation to work harder than I do. If anything, I need to be pushed harder, not throttled back. I don’t want to come accross as lazy. I mean, I do get my work done, and I’m happy with what I’ve accomplished with regard to my work. But I’m just never going to be the guy who works himself to death. I’m simply not as driven as some others are.
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I don’t recall ever having chores as a child, but I actually think it’s a good idea. Maybe I’m going too deep with this, but I think chores—however minor they might be—can help instill a work ethic and accountability. I can only speak for myself, but I would imagine people with SMA are more prone to having a weaker work ethic, because we’re so used to everything being done for us. This was certainly the case for me. Maybe chores serve as a reminder that we actually can do something of importance. What do you all think about that?
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I’m still looking forward to seeing it
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My mom and grandma have always been quite overprotective, but in different ways. My mom has always been petrified of germs. While yes, germs are extra dangerous for me, it was at a point where she wouldn’t let me do things like go to Starbucks with MY DAD (not some irresponsible kid or something) during cold and flu season. This was even when I was an adult. Fortunately, she has loosened up significantly, and never gets in my way anymore. I’m not sure what caused the change, but thank God it happened.
My grandma doesn’t worry so much about germs (mom does enough of that, even still) but she worries about pretty much everything else. Mostly my overall safety, similar to DeAnn’s mother. Basically, she just worries that whomever I’m with will neglect me somehow.
It’s really tough, because I understand the overprotection, but I also don’t want them getting in my way. One thing that helps me is my dad. I swear he has literally never worried about a thing in his life, so he’s been a great advocate for my independence. He’s often the voice of reason.
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Having my own space is something I’ve always craved. In the house I lived in for 16 years, I didn’t have much, because it was somewhat small for my five-person family. Since we moved to a larger house a little over a year ago, however, I have much more space. I also live at my grandparents’ house three nights a week, and while it’s smaller, I still have a decent amount of space.
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Congratulations on that! Of course I feel cut off from those who “get it”, because I seldom encounter them in person. I’ve felt less isolated in that regard, however, since I started working at BioNews. Even though it’s not in person, I get to interact with you all on a daily basis.
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Check out Caseology on Amazon. I got a case for my iPhone 8 there for like $13. I’d say it’s a nice balance between being lightweight and protective. It also has a carbon fiber type look which is pretty cool.
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Thanks guys.
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The humor is awesome, because it sets the tone for the rest of the book. I wasn’t surprised by it, because I knew a little about Shane before I read the book. I like the irreverence, because it doesn’t depict a sense of doom and gloom.
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I have never even considered it as a possibility for myself. There is some amazing technology though. I met a guy named Sam Schmidt who is a former Indy Car driver and is now a quadriplegic. He still drives a Corvette with sip and puff and eye gaze technology. So anything is possible. I’m interested in autonomous vehicles. Those could be awesome for us.
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Looking forward to it.
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I’m excited to see this because I’m a huge fan of Cranston in Breaking Bad, and Kevin Hart is Kevin Hart. I’ll reserve judgment until I see it, though. I’m hoping it’ll just be fun, and not have some agenda behind it.
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I’ve chronicled my Spinraza journey on my column. Basically, after pursuing it for like two years, I finally just couldn’t take it anymore. There were so many setbacks. I just couldn’t put myself through any more. It’s been a few months since I made that decision, and I have no regrets so far. I’m optimistic about future treatment options.
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It’s not about the years in your life, it’s about the life in your years. I think Lincoln said that. Rip Carson.
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Great to hear from you, Todd! I’m Ryan, one of the forum moderators. If you have any questions, please let me or one of the other moderators know.
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My friend and caregiver, Sam, is sicker now. He has something weird that kinda comes and goes.
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The broken femur stood out, because I suffered the same injury. I also thought it was cool how his cousin was basically his “nurse” at school.
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I have a good sized room, and it’s nicely located in the corner of the house. In the old house, my room was right smack in the middle of the house, which was annoying.
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I hope it got recorded. We requested it, but there’s concern it might not have been. I should find out later today. Thanks for the kind words, and good luck with your own ministry!
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If I’m not mistaken, this is based on a true story, so it’s not like they’re just making it up. It’s not the norm though. Makes for a more exciting movie I guess haha.
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Haha 😂