loulou
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Post by loulou on Jun 15, 2019 17:58:33 GMT -5
Hey @king Hopper,
Of course your perspective counts.
1/ The safety element sounds as if it was very important to you & as a young child I understand that.
2/ Similarly I can see why you felt alienated whilst in your chair at school. You were different & stood out from the rest. Yes it all leads to a lack of self confidence. You may still be struggling with that but you’re beating it in sharing your thoughts like this.
3/ I like that you used your crutches as weapons! Again I understand your embarrassment here, though obviously you had no need to feel that way.
4/ That mix of a sense of vulnerability without your mobility aids but at the same time freedom is a very interesting one & I think because you’ve previously experienced a chair & are now walking your perspective is very different to the others here.
Thanks.
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Post by Sir Paul on Jun 15, 2019 20:11:55 GMT -5
It's nice to hear I'm not the only one who's in a similar situation Paul. I'm going on year 23 with my buggy and am always nervous of it breaking down because if it does I'd be in trouble. About 15 years ago my insurance co offered to buy a brand new one for me so I thought sure why not. I had to get it sight unseen though and within 1 minute of sitting in it I knew it wasn't going to work. I have a cargo/van seat which they said aren't made anymore and the new one was really uncomfortable. I might have been able to get used to it eventually but the deal breaker was the handle, it was ginormous. I couldn't get close enough to a desk/keyboard tray which essentially meant I couldn't work. The guy said 'you do this and this and this and the arm folds back out of the way" .. there was no way I could do that myself and even if I could it put my arm in such an awkward position I couldn't use the mouse. Plus it was more difficult to drive due to the shape and position of the knob. His response was basically 'sorry'... And from what I've seen, that style of handle is all they make now. So yeah, I don't think my buggy defines me but its super important and without it my life would drastically change. Man, I thought I was the only one! It would be easy (but probably expensive) for some custom auto or motorcycle maker to build us a scooter exactly to our needs. I need to investigate that option. It's funny, each time my docs proposed getting a new scooter they go on and on about they can customize it to my needs. Then when I go in for the evaluation, I'm reminded that "customization" means that they can add a basket on the front of it.
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Post by turbo234 on Jun 15, 2019 20:23:26 GMT -5
It's nice to hear I'm not the only one who's in a similar situation Paul. I'm going on year 23 with my buggy and am always nervous of it breaking down because if it does I'd be in trouble. About 15 years ago my insurance co offered to buy a brand new one for me so I thought sure why not. I had to get it sight unseen though and within 1 minute of sitting in it I knew it wasn't going to work. I have a cargo/van seat which they said aren't made anymore and the new one was really uncomfortable. I might have been able to get used to it eventually but the deal breaker was the handle, it was ginormous. I couldn't get close enough to a desk/keyboard tray which essentially meant I couldn't work. The guy said 'you do this and this and this and the arm folds back out of the way" .. there was no way I could do that myself and even if I could it put my arm in such an awkward position I couldn't use the mouse. Plus it was more difficult to drive due to the shape and position of the knob. His response was basically 'sorry'... And from what I've seen, that style of handle is all they make now. So yeah, I don't think my buggy defines me but its super important and without it my life would drastically change. Man, I thought I was the only one! It would be easy (but probably expensive) for some custom auto or motorcycle maker to build us a scooter exactly to our needs. I need to investigate that option. It's funny, each time my docs proposed getting a new scooter they go on and on about they can customize it to my needs. Then when I go in for the evaluation, I'm reminded that "customization" means that they can add a basket on the front of it.
Well mine isn't exactly a scooter, it is a typical chair, but I hear you... I ask what they can change and the response is "Anything! … except the seat, handle, controls, tires, leg rests..."
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Post by Hopper on Jun 16, 2019 13:56:10 GMT -5
Hey @king Hopper, Of course your perspective counts. 1/ The safety element sounds as if it was very important to you & as a young child I understand that. 2/ Similarly I can see why you felt alienated whilst in your chair at school. You were different & stood out from the rest. Yes it all leads to a lack of self confidence. You may still be struggling with that but you’re beating it in sharing your thoughts like this. 3/ I like that you used your crutches as weapons! Again I understand your embarrassment here, though obviously you had no need to feel that way. 4/ That mix of a sense of vulnerability without your mobility aids but at the same time freedom is a very interesting one & I think because you’ve previously experienced a chair & are now walking your perspective is very different to the others here. Thanks. Thanks loulou for all your points, and the question itself. The last one in particular is interesting as it's inspired me to speak a little more about my perspective rather than shy away from it.
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loulou
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Gender: Female
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Post by loulou on Jun 16, 2019 15:20:55 GMT -5
"This is my wheelchair. There are many like it, but this one is mine." My current "chair" is a mobility scooter. We've been a couple for 25 years. It's not your standard old guy scooter. It's small-ish, has bigger nobby go-kart tires, and probably goes faster than it should while being safe for a guy in my condition. Before this, I used smaller, youth sized scooters called Pony's since I transitioned from walking to rolling, around 8 years old. I've never used or tried using a traditional wheelchair. As my disease has progressed with contractures and muscle weakness, my body has adapted to this particular scooter. I've even tried other scooters - I have two other newer ones that go unused - but nothing works as good as Old Reliable. I'm good for perhaps 3-4 hours in my scooter before my legs, neck, and back start screaming at me to rest. I lean forward when I sit because of my body shape, so my legs and ankles are under constant pressure. My most comfortable position is outside of my scooter on the floor, on my knees and elbows with my legs folded under me. It feels AWESOME to get into this position after a "long" day in my scooter! I do love what my scooter represents (freedom) and I'm VERY protective of it. A lot of that is from the fear that something bad will happen to it and I'll be forced to transition to another scooter that isn't nearly as comfortable for me to use. The thing is a quarter of a century old and they stopped making it a few years after I got it! That means no replacement parts either. This causes me some anxiety My scooter does not define me, though it is complimentary to my personality. I think it's a badass machine despite it's need for some body work, new paint, and ghost flames. It is a great tool. I'm 100% grateful for it's existence, I have never, ever felt even an ounce of shame for being seen in it. It's unique for a "wheelchair" and I'm even a little proud to be seen cruising around in it. It has taken me to some cool places on and off the beaten road. I can understand and empathize how a person with a recent injury or sudden disability would see their wheelchair differently, as a representation of a loss. As a lifelong disabled person, I view my scooter as my access to the world outside my house. Until they figure out how to make my body work better, I'm cool with that.
It's nice to hear I'm not the only one who's in a similar situation Paul. I'm going on year 23 with my buggy and am always nervous of it breaking down because if it does I'd be in trouble. About 15 years ago my insurance co offered to buy a brand new one for me so I thought sure why not. I had to get it sight unseen though and within 1 minute of sitting in it I knew it wasn't going to work. I have a cargo/van seat which they said aren't made anymore and the new one was really uncomfortable. I might have been able to get used to it eventually but the deal breaker was the handle, it was ginormous. I couldn't get close enough to a desk/keyboard tray which essentially meant I couldn't work. The guy said 'you do this and this and this and the arm folds back out of the way" .. there was no way I could do that myself and even if I could it put my arm in such an awkward position I couldn't use the mouse. Plus it was more difficult to drive due to the shape and position of the knob. His response was basically 'sorry'... And from what I've seen, that style of handle is all they make now. So yeah, I don't think my buggy defines me but its super important and without it my life would drastically change.
Hi turbo234, I’m so sorry I missed your post. Yes it must be very frustrating to not be able to get a chair that not only fits you but that works for you & with you. It’s good though that you recognise it’s importance your chair does not define you. As for the simplicity of changes ‘anything but virtually everything’ 🙄🤣
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loulou
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Posts: 114
Gender: Female
Dev Status: Devotee
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Post by loulou on Jun 16, 2019 15:22:37 GMT -5
It's nice to hear I'm not the only one who's in a similar situation Paul. I'm going on year 23 with my buggy and am always nervous of it breaking down because if it does I'd be in trouble. About 15 years ago my insurance co offered to buy a brand new one for me so I thought sure why not. I had to get it sight unseen though and within 1 minute of sitting in it I knew it wasn't going to work. I have a cargo/van seat which they said aren't made anymore and the new one was really uncomfortable. I might have been able to get used to it eventually but the deal breaker was the handle, it was ginormous. I couldn't get close enough to a desk/keyboard tray which essentially meant I couldn't work. The guy said 'you do this and this and this and the arm folds back out of the way" .. there was no way I could do that myself and even if I could it put my arm in such an awkward position I couldn't use the mouse. Plus it was more difficult to drive due to the shape and position of the knob. His response was basically 'sorry'... And from what I've seen, that style of handle is all they make now. So yeah, I don't think my buggy defines me but its super important and without it my life would drastically change. Man, I thought I was the only one! It would be easy (but probably expensive) for some custom auto or motorcycle maker to build us a scooter exactly to our needs. I need to investigate that option. It's funny, each time my docs proposed getting a new scooter they go on and on about they can customize it to my needs. Then when I go in for the evaluation, I'm reminded that "customization" means that they can add a basket on the front of it. Do you mean you haven’t had your scooter ‘customised’ with a basket? 😂😂
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loulou
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Posts: 114
Gender: Female
Dev Status: Devotee
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Post by loulou on Jun 16, 2019 15:28:43 GMT -5
It’s a pity that rules & regulations get in the way of something like this & similarly that there was no one to talk you through what you were likely to experience. Presumably you will be in that post for those that follow after you. Other than the pain you mention & the headache it’s good that you feel the treatment has been easy. Was the feeling that you needed to run a strange one & did it feel unpleasant in any way knowing that you couldn’t? There’s obviously an awful lot going on where the treatment of SMA is concerned & it’s s shame it’s not more widely known. Thanks for explaining all that darthoso , I really appreciate it. The insurance delay was more "this is a lot of money but we can't say it's a lot of money so we're just going to cherry pick clinical study data to argue it's not medically necessary" which made arguing against them really easy. The hospital side was just bizarre bureaucratic borderline illegal incompetence. Bizarre situation I still don't fully understand the bureaucratic politics of. The injection issue is mostly driven by every back being different, the experience of the doctor, and there being zero consensus among the Interventional Radiology community about dosing methods. Of the 3 main methods, you can find doctors who swear by one method but think other methods are absolute insanity. The running feeling is like a burst of energy, it's not frustrating, I just need to find a way to channel it. Where bureaucracy is concerned there are 2 sayings that spring to mind: ’bureaucracy is more people doing less things, & taking more time to do them worse’ & ‘red tape is strictly non elastic’ 🙄🙄 As for the injections yes it’s undoubtedly near impossible to find 2 cases the same & similarly finding 2 doctors who agree; like lawyers it’s all down to opinion. I’m happy to hear you’re not frustrated by the feeling of a burst of energy & as such I’m sure you’ll find a way to channel it.
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Post by Sir Paul on Jun 16, 2019 15:41:29 GMT -5
Do you mean you haven’t had your scooter ‘customised’ with a basket? 😂😂 That's in the same category as a fanny pack! Practical, maybe, but I have SOME dignity left, so no.
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loulou
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Gender: Female
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Post by loulou on Jun 16, 2019 15:44:19 GMT -5
Do you mean you haven’t had your scooter ‘customised’ with a basket? 😂😂 That's in the same category as a fanny pack! Practical, maybe, but I have SOME dignity left, so no. @sir Paul, You do realise I’m from the UK & over here ‘*****’ has a different connotation? 😳🤣
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Post by turbo234 on Jun 16, 2019 15:48:34 GMT -5
That's in the same category as a fanny pack! Practical, maybe, but I have SOME dignity left, so no. @sir Paul, You do realise I’m from the UK & over here ‘*****’ has a different connotation? 😳🤣
Do tell loulou!
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loulou
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Posts: 114
Gender: Female
Dev Status: Devotee
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Post by loulou on Jun 16, 2019 16:24:14 GMT -5
@sir Paul, You do realise I’m from the UK & over here ‘*****’ has a different connotation? 😳🤣
Do tell loulou !
Oh what was I thinking? 🙄 In the UK ‘*****’ is a slang word for a lady’s private parts. How embarrassed do I feel writing that? 😳
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Post by turbo234 on Jun 16, 2019 16:38:51 GMT -5
Oh what was I thinking? 🙄 In the UK ‘*****’ is a slang word for a lady’s private parts. How embarrassed do I feel writing that? 😳
What? fanny pack means that? no way!
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loulou
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Posts: 114
Gender: Female
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Post by loulou on Jun 16, 2019 16:40:32 GMT -5
Oh what was I thinking? 🙄 In the UK ‘*****’ is a slang word for a lady’s private parts. How embarrassed do I feel writing that? 😳
What? fanny pack means that? no way!
Not the ‘pack’ part, just the first word 🙄 I’ve started something now 🙄
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Post by Hopper on Jun 16, 2019 16:56:02 GMT -5
Ah yes, the OTHER 'F' word. Mind you, I was once falsley accused of being as a homophobe for championing my local foodstuff known as a 'faggot', a large pork-based meatball often served with grey peas and bacon.
Thinking about it, there's something inherently dirty sounding about Toad-In-The-Hole too.
Right, carry on.
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loulou
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Gender: Female
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Post by loulou on Jun 16, 2019 16:58:54 GMT -5
That's not too bad loulou I once posted saying I'd just smoked a fag and was chilling, got inundated with PM's from gay devs in the US 🙄 Fag got mixed up in translation 😂😂 Yes did you ever wish you’d never started something? 🙄 At least you made some gay Devs’ day! 😳
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