ryan-berhar
Forum Replies Created
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Interesting. I myself have been a little out of sorts mentally in the last couple weeks. Nothing in particular is wrong, so I still haven’t figured out why. Maybe it just goes back to the cold.
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Still trying to move out of house. Lol
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I find Facebook useful for updating people on important events in my life. This sometimes includes SMA related stuff. When I was pursuing Spinraza, I’d update people on Facebook. It’s more convenient than texting like 50 people individually. If anything, I avoid talking politics, but there’s no SMA stuff I avoid.
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Kevin, how much did you pay for the shoutout? Haha
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Yeah that’s tough. I guess I’d suggest getting a bunch of easy to open drawers at your level. You could even tie some rope or something to them so your dog can pull them open.
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I’m staying off social media as well. Out of sight out of mind haha.
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Everyone, please take a minute to complete this short survey.
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Really awesome to hear that you’re remaining positive!
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I like the sentiment.
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So I don’t mean to be critical of Shane when I say this, but the biggest theme i noticed throughout the book was how he often wouldn’t get out of his own way. Like when he broke his femur, he downplayed it, only making it worse. He also refused to get a feeding tube for a long time. As a kid, he waited so long to pee that he’d frequently wet his pants. Just a few examples of a recurring  trend. Did you guys pick up on that? Can you relate?
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The only real goal I have is to move into my own home and provide for myself financially. I guess that’s two, but they go hand in hand.
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Just reading Kevin’s list should keep you busy till April.
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That’s awesome. Still working on getting mine.
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I’d just encourage you not to make any emotional or rash decisions. Anyone in any field will have occasional doubts, but they’ll usually pass. If this is a field you’re passionate about and gifted in, then stick with it.  Not to mention all the time and money you’ve dedicated to it. That’s just my two cents without having a great understanding of your situation. Just want to encourage you to plow through the rough times.
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Great column!
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Moving out of state is certainly a dream for me. It’s just so darn cold here. But that’s a long way off, if ever. I like LA, but living there might not be so great. Arizona is warm, so it might be ideal for me. Where are you wanting to move? If you don’t mind me asking.
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Hey Robert, I’m Ryan, one of the forum moderators. Good to hear from you. Just to briefly summarize my own situation, I’m 22, and have type 2. I tried to get Spinraza for like a year and a half, but I eventually gave up, because it was just setback after setback. It is my opinion that children (young children in particular) should get on Spinraza ASAP, because frankly, their chances of surviving without it are in jeopardy. It’s just extremely risky for them to holdout for future treatment. Now for adults like us, chances are we can afford to wait a little longer. But then again, there’s no guarantee that a better treatment will be available for us. It’s so tough. In the end, everyone just has to make the best decision for themselves.
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Hey Jason, welcome! I’m Ryan, one of the moderators. Thanks for joining us.
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Well it becomes more feasible once I get on SSDI, which I’m told will take about five years. So my plan for the time being is basically just to work and save for the next five years. By then I should have significant savings along with SSDI. I do hope to achieve the goal sooner than that, but that just depends on what my income situation looks like, which is difficult to project.
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Yeah. I too broke my femur, and I didn’t get it looked at till the following day. I wasn’t trying to downplay it, but it genuinely didn’t hurt when I was sitting in my chair, so I thought it couldn’t possibly be broken.
I would say that I sometimes try to fight off sicknesses on my own too long. I want to stay out of the hospital so badly, but sometimes it’s best to get out in front of it early. Like when I got metabolic acidosis in 2013, I didn’t go to the hospital for like a couple days, and I ended up in a coma because of it. I’ve basically decided that if I ever throw up again, I’m going straight to the hospital.
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Technically it’s a treatment and not a cure, but many people use them interchangeably. Hopefully it won’t mislead anyone given the context of the interview.
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I don’t think I’ve ever asked a stranger for help, believe it or not.
