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The struggles of eating with SMA
Living with SMA means that, sometimes, you are not hungry. Or can’t eat everything you would like to and sometimes you can struggle with it.
Columnist Brianna Albers, explains that while she could ask her friends to help her eat when they go out, there are reasons she prefers not to.
Read what else Brianna has to say about “Eating a Monster Meal with Friends” in her column.
What are your biggest struggles when it comes to food?
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7 Replies
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Over the past three years, I lost the ability to lift my right hand to my mouth. Fortunately for me, I have caregivers that help me eat each and every day. My close friends are also very understanding and will help me eat if we get together. While it was embarrassing at first to have someone feed me if we went to a restaurant, my caregivers and my friends told me that if it wasn’t embarrassing for them to feed me, then it shouldn’t be embarrassing for me either. It took me a while to feel comfortable with having someone feed me in public, but this is something that I had to tell myself that it was just part of my life. Besides, I pity the person who would dare say anything to me because my caregivers and my friends would definitely have something to say about it. My friends and my caregivers are very protective of me, and for this, I’m very thankful.
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Michael have you looked into the JACO 3-fingers robotic arm? It’s a product made by Kinova Robotics. Check out their website at http://www.kinovarobotics.com.
I think we’ve talked about it before, but I’ve written about this device before and I’ll show it to you in person at the SMA conference next month. It’s given me an indescribable amount of independence in the last few years, especially when it comes to eating and drinking. I’m happy to answer any questions you have about it.
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Yeah I really want to get one. It’s amazing. I’m going to set up a GoFundMe
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I think you could really benefit from having one. Let me know if you need any help.
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This is becoming a bigger and bigger issue for me. Eating in general for me is so hard. Sometimes I get frustrated by it. It’s almost becoming more trouble than it’s worth. I get tube fed so I don’t really even need to eat.
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Ryan have you looked into getting a JACO robotic arm since you tried one out? I was just curious if you were still interested. I’d be happy to answer any questions you have about it. It helps a lot with eating and drinking.
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I mastered the catapult method. Where you put food on your spoon or fork, then flip it into your mouth. Needless to say I got a lot of looks doing this, but it worked for me. Maybe not for every food, but soup was never my thing anyway. For soup I’d use a straw. Can you believe some restaurants aren’t going to be giving you straws anymore? Supposedly it’s an environmental thing.
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