ryan-berhar
Forum Replies Created
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Hey Rachel, Lauren Bakken is Kinova’s full time family advocate and she works on appeals, including help with drafting the appeal letter. Contact her at [email protected]. She should be able to help.
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Thank you all very much. I’m glad to hear that my contributions mattered.
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Driving on rough terrain like gravel is always a challenge, but everything is that much tougher in the cold.
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This is something I’ve thought about. I have had some friends or family who have “left” in a geographical sense, but they didn’t abandon me personally. Life will inevitably force people down different paths, but it’s still possible to stay connected these days.
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I quit doing anything for Halloween when I was probably ten, mostly because it’s just extremely cold, but I never cared much about it anyway. I don’t really have any stories lol.
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I have to take stomach issues very seriously, as I can get metabolic acidosis, which has nearly killed me on at least a couple occasions. I don’t think that’s the case with you, but I would still be careful
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Hey Crystal, I’m so sorry this happened. As the others have said, I think it’s imperative that you have a way to call for help. At my house, I have a baby monitor so my mom can hear me. I call it a man monitor haha.
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That’s pretty bad. I don’t like public transportation for many reasons, but sometimes there’s no better option.
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I love the hot weather. It’s just that during summer I’m bored out of my mind. Fall for me is a good combination of having more to do, and it’s still not freezing cold.
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Yeah, we take great precautions to keep me from getting sick, but sometimes they aren’t an option. You gotta do what you gotta do.
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I would probably just tell her that you really appreciate her service and want to keep her, but that going forward you require a bit more consistency. I don’t see anything wrong with that.
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Dennis mentioned down vests which are great because they don’t restrict movement as much. I also have a Patagonia coat which I believe is down. I always struggled with coats , because they restricted me too much, but this one works.
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It really all depends on what you plan to do with it. I like Macs in general, but they’re not good for gaming. As far as touchscreen, if you’re not gonna use it, I don’t see much point. But if it’s the same price, it doesn’t hurt to have an additional feature.
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This is certainly very true. Even though I’m not on spinraza, there’s just more of a general sense of hope now about SMA than there was before.
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I totally understand where you’re coming from. Even though they likely have positive intentions, it’s still frustrating.
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A couple things stood out. One was that everyone agreed that they felt like a burden. I’m sure everyone with a disability has felt that way at some point. Still, I was a little surprised it was unanimous. The other was the question on whether you’d change your disability. I get that it is a huge part of who I am, but I’d like to assume that I’d be a better person without it. I don’t want to give SMA credit in any way. Ultimately, none of us know what we’d be like without a disability, but I’d be willing to take the chance. I also have a difficult time believing that anyone would truly refuse a working body if it was an option. Like DeAnn said, if you’re on a treatment, that answers the question right there.
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Thanks Alyssa. You’ll do fantastic
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Thanks man
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That’s a good point. There are people who genuinely just need to vent and receive support, and being met with something like “I’m worse off than you and managed to do X Y and Z”, just pours gas on the fire.
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I believe this was the case with my left arm/hand. Since I was a little kid, I used it to drive, so it sort of sat there not doing much. Now it’s basically useless. On the other hand (pun intended), my right arm still moves decently, I guess because I’ve used it more.
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That’s honestly a really difficult question. I suppose we need to define what a “better person” means. Would i be as mentally strong without SMA? Perhaps not, because it has forced me to deal with many challenges. But even so, living with this disease does bring me down mentally. So I don’t know. Maybe a better way of putting it is that I’d live an overall better life. I’m confident saying that. I’d probably be more productive and cause less problems for those around me. Again, this is strictly hypothetical. Maybe I’d be a serial killer or something if I didn’t have SMA. But it seems to me that if I had a working body, I could be a better person. Those are just my thoughts.
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Did your brother have SMA?
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Yeah I agree. Our lives with SMA are already challenging, so we’re probably more equipped to handle additional diagnoses.
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I ordered some equipment last night. Hoping it works
