loulou
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Post by loulou on Jun 13, 2019 16:35:48 GMT -5
I've had a powerchair since I was almost 3 years old and a powerchair with power seat functions since I was 12, so I don't really think about it. I know what the chair is capable of, how to interface it with my disability (which is changing because of Spinraza) and what it can't do. I'll do things in my chair and not even realize it if I zone out. When I do notice big time is when something is broken, very frustrating. Being out of the chair is just relaxing, especially since I'm in it about 14 hours a day. Hi darthoso, you’ve had a power chair a long time. It’s interesting that you feel relaxed when out of it & I can see how it must be extremely frustrating when it’s not functioning properly. When you say your disability is changing because of Spinraza I take it that your condition is improving? Do you mind me asking how so & what hopes you have long term?
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Post by sy on Jun 13, 2019 16:39:22 GMT -5
loulou I go more of a storyteller route, and I sprinkle in funny analogies as I go on.
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loulou
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Post by loulou on Jun 13, 2019 16:40:16 GMT -5
LouLou—-I’m fairly new to this ....I got my chair in 10/16....about 2:1/2 years now. I’m a double amputee...thanks to diabetes, At first I didn’t even think about the chair as anything but a device for mobility,but now it’s still just a device to get from point A to point B. But I respect it now a lot more. I like how SY called it his mount. Lol. It doesn’t define me in my eyes but the ABP do jump to conclusions. Sometimes I think that when SOME ( not all ) .... ABP are quick to judge a person in a wheelchair either with good or bad intentions... Personally, I’d rather have my legs back....they were sexy.....lol Hello nofacue, yes you are a newbie compared to some of the guys on here & yes unfortunately you’re right in that some AB prejudge PWD. This may well be for no other reason than they’ve never interacted with any PWD & therefore have no experience to prove that they are just the same as anyone else. As for your legs being sexy they were just a part of you so no doubt you’re still just as sexy but sat in a chair 🙂
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loulou
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Post by loulou on Jun 13, 2019 17:01:58 GMT -5
* How do you view your chair? Do you see it merely as a functional tool that enables you to mobilise or as an extension of yourself? My chair is a functional tool, sometimes dysfunctional and requiring repairs! However I have used a chair that long that it had become an extension of myself, I use my chair like you would use your favourite shoes,its comfortable, it does what is required and for want of a better phrase when I use it 'I just flow and move naturally without a seconds thought' * Does your chair define you in any way & if so, how? My chair doesn't define me, I think my personality defines me, but my paralysis and being injured in my late teens, that definitely changed my personality and outlook. So I'd say my paralysis has influenced how I've turned out as a man, to a certain extent defined me, but not my chair. Having said that me in a chair is a sight to behold, 'smokin hot' springs to mind' 😋 * How often are you out of your chair & for how long? When out of it do you feel a sense of freedom or one of isolation? I work so im in my chair all day, will jump on the sofa on a night and of course I dont sleep in my chair when in bed! I'm indifferent to how I feel when outta my chair, I'm just not in it, its still me. I do like the freedom to move around bed, that just depends who I'm in bed with. * How would you explain your relationship with your chair? Do you love the way it liberates you but hate that it’s a necessity or are you indifferent to it Without it I'm fucked, so it's a necessary tool to enable me to live life, I neither love or hate it, I need it, it fits me, I've a zen like relationship with it, I think you can always spot someone who has used a chair for a long time, there is a naturally flow and rhythm to a long time wheeler and things done subconsciously like a slight twist of the upper body to swing the chair around corners with minimal effort that others who are new to wheeling can sometimes make look awkward. But then I've been wheeling 30yrs so I should know all the tricks in the book Hiya @tykes , Yes it’s easy to see why that functional tool has become an extension of yourself after so many years use; you use your chair in the same way we use our legs, subconsciously. Undoubtedly your personality does define you & yes an SCI must be a life changing experience at such a young age; you becoming a PWD coincided with you becoming a man. You are you whether you’re in your chair or out of it, you’re either in it or out of it & you move with it, it moves with you. I’m glad to hear you don’t sleep in it & perhaps you do take on another persona in bed depending upon your partner 😉 I think your attitude to not only your chair but the words written here that refer to life in general emphasise the importance of acceptance. You have clearly accepted your injury & the changes it has wreaked upon you physically, psychologically & emotionally. Your relationship with your chair isn’t one of love or hate but zen; what a wonderful word. Although you believe yourself ‘smokin’ hot’ in your chair & I’m inclined to feel that ‘modesty maketh the man’, I think for once you are being modest. After 30 years in a chair maybe you should know all the tricks in the book but not every one has reached the page you’re on.
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loulou
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Post by loulou on Jun 13, 2019 17:08:34 GMT -5
I hate my chair so much that I try to 'hide' it. I am C6 complete and could do with more support for my needs i.e. balance etc but I have this 'thing' stripped down...no arm rests, low back, too narrow so that my body stands out more than it, brakes hidden under the seat etc. When I am put to bed, I have this thing removed from my bedroom. I'm 34 yrs post injury and still can't stand the sight of it, I avoid mirrors as I hate my reflection. It is a government issue as I refuse to buy one, I'd rather donate money to charity than pay a private company and buy a more suitable light weight one. It's not the most hygienic either as I refuse to clean or have it cleaned. Hey folks, sorry if I'm coming across as a miserable so and so, I actually am a joyful happy bunny most the time, I just hate this thing. Michael x Hello Michael. I’ve ‘liked’ your post though it’s not easy reading. There’s no need to apologise; as raindrop has said you’re simply being honest & straightforward & I appreciate that. It sounds as if you’ve never really accepted your chair or maybe even your disability. At 34 years post injury you’re similar to @tykes & yet your attitude is a world apart, his zen like acceptance is in total contrast to your own. I cannot begin to imagine what lithe transition from AB to PWD is like. I’ve said elsewhere that I believe we all crave acceptance in one form or another, but I’m beginning to realise that if others are to accept us we first have to accept ourselves & maybe that the hardest thing to do. I also agree with @delight in that perhaps by replacing your chair with a newer more comfortable one my help you to look better & therefore feel better.
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loulou
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Post by loulou on Jun 13, 2019 17:23:31 GMT -5
I'm a triple amputee and use prothetics most time. I have what I consider a pretty cool TiLite titanium manual chair with Spynergy wheels, it's small and lite, completely stripped down, and fits me snug. I used it a fair bit for the first year after my injury and then less and less as I transitioned to prosthetics. Now I just use it at home or on days when the prosthetics aren't agreeing with me or for a short trip out and don't want to get all put together. During the first year I went from super self conscious out in public to fairly comfortable and confidant as I discovered I was pretty much either accepted or ignored by people. Now that I've been mostly a prothetics user for a number of years I once again feel self conscious but usually only if I'm meeting up with people who know me as the prosthetics version of me. So ya, it's a cool chair, I feel self conscious in it sometimes depending on the social environment. Thanks for asking. Hi zackamp, It’s good to hear you refer to your chair as ‘cool’. I daresay your initial feelings of self consciousness in the early days to becoming more comfortable later on resonate with many of your peers here. Again people notice differences & because of that we all feel self conscious at times. Thanks for answering zackamp.
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loulou
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Post by loulou on Jun 13, 2019 17:29:26 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. Hey @sir Paul, I loved reading about Old Reliable who isn’t really a ‘chair’. Congratulations on being a couple for 25 years! Admittedly your position on your scooter does look terribly uncomfortable but it’s still hard reading what is most comfortable for you; it certainly doesn’t sound it! Your fear of losing it after all this time is fully understandable. I like that it compliments your personality & how you describe it as ‘badass’, Similarly your acceptance of it, in fact pride in it & how it works for you instead of your body.....a form of compensation.
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loulou
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Post by loulou on Jun 13, 2019 18:04:13 GMT -5
loulou I go more of a storyteller route, and I sprinkle in funny analogies as I go on. So have you always been a comic sy? When you refer to your disability or your chair in your act how does the audience react?
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Post by darthoso on Jun 15, 2019 0:19:53 GMT -5
I've had a powerchair since I was almost 3 years old and a powerchair with power seat functions since I was 12, so I don't really think about it. I know what the chair is capable of, how to interface it with my disability (which is changing because of Spinraza) and what it can't do. I'll do things in my chair and not even realize it if I zone out. When I do notice big time is when something is broken, very frustrating. Being out of the chair is just relaxing, especially since I'm in it about 14 hours a day. Hi darthoso , you’ve had a power chair a long time. It’s interesting that you feel relaxed when out of it & I can see how it must be extremely frustrating when it’s not functioning properly. When you say your disability is changing because of Spinraza I take it that your condition is improving? Do you mind me asking how so & what hopes you have long term? I've been on Spinraza since April last year (7 doses), most of what I have noticed is primarily core strength. I'm breathing deeper, my balance has improved, and I can sit myself forward independently again. Last week I noticed I could sit up without such an aggressive tilt, meaning my chair's seat elevator is useful again. What's interesting also is most of the changes have been noticed by people I don't see regularly, including by those who didn't know about Spinraza. They've said my voice is louder and clearer, my color is better, and I seem "more perky". Long term I have no idea, I'd like some arm and hand strength back, but this is all new territory for SMA. My neurologist said of his SMA patients I'm showing the most improvements. ^Sitting unsupported
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loulou
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Post by loulou on Jun 15, 2019 8:04:17 GMT -5
Hi darthoso , you’ve had a power chair a long time. It’s interesting that you feel relaxed when out of it & I can see how it must be extremely frustrating when it’s not functioning properly. When you say your disability is changing because of Spinraza I take it that your condition is improving? Do you mind me asking how so & what hopes you have long term? I've been on Spinraza since April last year (7 doses), most of what I have noticed is primarily core strength. I'm breathing deeper, my balance has improved, and I can sit myself forward independently again. Last week I noticed I could sit up without such an aggressive tilt, meaning my chair's seat elevator is useful again. What's interesting also is most of the changes have been noticed by people I don't see regularly, including by those who didn't know about Spinraza. They've said my voice is louder and clearer, my color is better, and I seem "more perky". Long term I have no idea, I'd like some arm and hand strength back, but this is all new territory for SMA. My neurologist said of his SMA patients I'm showing the most improvements. ^Sitting unsupported Hey there darthoso, Thanks so much for your reply. Obviously I know very little if anything as to your condition but the improvements you’ve listed sound quite significant, not only to you but others you come into contact with. You must be really pleased with the treatment & it’s great that you especially are showing the biggest changes. Did you have any reservations about starting the Spinraza & how much longer with the treatment continue? Loulou.
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Post by darthoso on Jun 15, 2019 10:48:27 GMT -5
I've been on Spinraza since April last year (7 doses), most of what I have noticed is primarily core strength. I'm breathing deeper, my balance has improved, and I can sit myself forward independently again. Last week I noticed I could sit up without such an aggressive tilt, meaning my chair's seat elevator is useful again. What's interesting also is most of the changes have been noticed by people I don't see regularly, including by those who didn't know about Spinraza. They've said my voice is louder and clearer, my color is better, and I seem "more perky". Long term I have no idea, I'd like some arm and hand strength back, but this is all new territory for SMA. My neurologist said of his SMA patients I'm showing the most improvements. ^Sitting unsupported Hey there darthoso , Thanks so much for your reply. Obviously I know very little if anything as to your condition but the improvements you’ve listed sound quite significant, not only to you but others you come into contact with. You must be really pleased with the treatment & it’s great that you especially are showing the biggest changes. Did you have any reservations about starting the Spinraza & how much longer with the treatment continue? Loulou. I went through a significant decline starting at 25 (I'm 30 now) so was eager to start, unfortunately it took about 16 months from FDA approval to start (8 months of insurance fighting, then 8 months of the hospital dragging it's feet illegally). My only concern was that Spinraza is a spinal injection, which is complicated since almost every SMA adult has a spinal fusion, and I couldn't get a straight answer from anyone about what that feels like. Opinions ranged from most painful thing ever to feels like a flu shot. Every back is different and every hospital has their own preferred dosing method, thankfully my hospital's Interventional Radiology Department has their act together and has gotten the needle in no issue. Dose 1 was the most stressful since they do everything day of, no scans before hand. Dose 6 was the most painful but comparable to a flu shot, dose 4 left me with a headache from hell (common side effect, lasted 4 hours), but otherwise everything has been easy. I actually get a little bit of a high after every dose that lasts a week, I feel like I need to run and my thighs get sore, I kind of look forward to it (been meaning to try massage after). My neurologist thinks that's just my nerve angry about a needle threading past them. Spinraza is SMN2 RNA splicing so it's in theory for life every 4 months, but an orally dosed RNA splicer is coming probably next year. SMN1 Gene Therapy, which is a "permanent" one time treatment, was approved in May but only for kids up to 2 years old (due to a liver issue), but a version that's safe for adults is in the works. All 3 in their own way do the same thing, up SMN Protein levels, so it's hard to say which will be better.
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loulou
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Post by loulou on Jun 15, 2019 10:57:37 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.
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Post by turbo234 on Jun 15, 2019 12:08:29 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.
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Post by darthoso on Jun 15, 2019 13:21:14 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.
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Post by Hopper on Jun 15, 2019 16:50:18 GMT -5
I’ve been thinking about you guys in chairs & how you feel about that piece of equipment that is a vital element in your life. I daresay how you answer will depend upon several things; your individual disability, whether that disability is congenital or acquired, the severity of your disability & of course most importantly your personality. * How do you view your chair? Do you see it merely as a functional tool that enables you to mobilise or as an extension of yourself? * Does your chair define you in any way & if so, how? * How often are you out of your chair & for how long? When out of it do you feel a sense of freedom or one of isolation? * How would you explain your relationship with your chair? Do you love the way it liberates you but hate that it’s a necessity or are you indifferent to it? Thanks again guys. Due to the fact that I've not really used a chair since my botox back in '03 I was stalling over answering these because I felt that I didn't really 'count'. But sod it, I've still got some perspective. However, if you guys feel that my answer doesn't belong here, let me know and I'll remove it. 1) My chair alternated with my walking frame pre-botox as my primary form of transport dependent on how I felt but out and about away from school I was always in my chair. I always preferred it because I felt safer in the chair. Depending on who was pushing me of course. I could push myself but it was very tiring. 2) It did define me, and not very well. I feel that it alienated me from classmates and teachers a lot of the time who would see the chair and not the kid inside it wanting to be challenged and taken seriously. It wasn't their fault of course, and as an adult it would be wrong to hold any ill feelings towards them. But I do feel that this indirectly lead to self-confidence issues that I still struggle with today in regards to my disability that I try my best to hide but even in this post they've popped up. 3) I was out of my chair and in my frame (we did try crutches, but I just used them as weapons) fairly often in the playground and even though I'd try and wheel it as fast as I could, I was very prone to trips and falls which not only scary but I hated all the attention and embarrassment afterwards. Even today it's the aftermath of the fall on an emotional and social level that can hurt the most, the embarrassment. 4) I loved my chairs and I do miss them, but on the flipside I realise that I'm super lucky to be where I am now and despite how vulnerable I feel without the mobility aids, I still feel a sense of freedom.
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