anna
Forum Replies Created
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I doubt the correlation between SMN2 and severity is that critical either. I have four copies of SMN2, which is a bit rare for type II, and yet I know of cases with three or even two copies that are less severe than mine.
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Yes, I’ve checked the company’s website. Pretty cool! Do you have any resellers outside of the US? Thanks for the warm welcome!
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Sorry to hear that, Alyssa. If only I had a magic recipe for dealing with situations like this, I’d be more than happy to release intellectual property rights! However, there’s one thing I can tell you from personal experience with hospitalizations and prolonged illness: this overwhelming feeling of extreme weakness and paralyzing fear that you’ll never bounce back completely, is temporary and – to a certain extent – illusory. You can trust me on this one, unfounded and unnecessary what-if scenarios are my field of expertise!
And another thing I try to remind myself of is that SMA is all about adapting to changing circumstances and modifying your lifestyle. So, what now seems insurmountable, will have become second nature to you in a few months.
Hope you feel better soon! I’ll be sending out positive vibes from sunny Athens!
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I totally see your point DeAnn! Your post reminded me of a TV commercial I saw recently. I can’t remember what was being advertised – a pay-TV broadcaster I think – but essentially it involved a group of friends casually enjoying a football game over pizza and beer. Among them a wheelchair user. I wasn’t the only one who noticed, my PCA found it curious since the ad had nothing to do with disability or even diversity. I, on the other hand, am curious as to why a disabled person can only participate in disability ads. I tried to explain to her that the message was inclusiveness. A product or service designed for and targeted to EVERYONE! Not sure I convinced her, but at least she looked perplexed which is a start lol.
In other words, I long for that moment in the hopefully not so distant future when disabled people will be advertising coffee or trans people will be advertising milk and it will look so ordinary that no one will even notice. Then we can talk about inclusiveness and social equality. In the meantime, I think we should draw as much attention as possible. Take it from someone who spent most of her life trying to be invisible until she decided to grow up and claim her space in the world!
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Hey Tammy! I tried the stylus pen, it’s not responding. It worked when my caregiver tried, but it didn’t work with me which means I’m not applying enough pressure. The thing is I can use my laptop’s trackpad (it’s how I’m writing this post right now), I just can’t use the phone. I guess it has to do with the larger surface and the fact that it requires more precision and a steady hand which isn’t the case anymore. Thank you for suggesting it anyway!
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That’s very helpful DeAnn! And I thought I’d seen everything on YouTube! Btw, the last time I got to test assistive equipment was also at my university’s AT library. Ever since, I just order stuff hoping they’ll work for me as no store seems to have anything in stock!
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Many thanks Yvette! As I explained above, I’m probably going for Android too, so I’ll definitely need your help! I’m sure you’ll regret this, but I promise not to pester you too much!
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Yeah, I’ve heard great things about Apple’s accessibility features. The problem is that the Greek language, which is my native language, doesn’t support certain features such as Predictive Text. Word prediction and suggestion save me considerable time and energy, so I guess iPhone is a no go for me. Regarding voice recognition, I think the Android equivalent is Google assistant, but I need to train it to understand my English as my speech is a little impaired. Add to this my Greek accent and you’ll get the picture!
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Thanks DeAnn! My job is very interesting indeed, although practicing law remotely can be challenging. As for Greece, it’s mostly sunny weather and extroverted people. Not as disability-friendly as you could expect, but you get by with a little creativity! I’m happy to provide info to anyone who might be interested in a trip! It’ll be a great chance to meet in person too!
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Hey Blake! I find IT really fascinating and immensely useful to people with disabilities. If only I hadn’t been so lazy at university and had taken a few classes, my life would be much easier now!