Guest guest Posted May 3, 2003 Report Share Posted May 3, 2003 hello gina :-) i have a sumed cushion which i find comfortable, though you might find it a bit hard to start with. i think it is a gel cushion. i know what you mean about ot's try to make you text book. my last one said i should only be in a wheelchair for a max of 3 hours at a time!! linda Cushions > Firstly, an apology, as I rarely ever write, but have lurked here for a long time. > > I have been going through an immense amount of pain for the past 5 months, along with getting weaker rather more quickly than I am used to. I am type 1/2, 37, female living with partner. > > Can anybody suggest any ideas for cushions that are not moulded or contoured? I have a pretty severe scoliosis which is fused (spinal fusion when I was 16) - my left hip is about 3 " higher than the right - and I am in the UK (so a little limited on what available). Oh, hips aren't level, but the rest of my body has compensated over the years, so the point is - I am used to it. I hate the idea of being trapped in a moulded seat - I fear it will feel like a straight-jacket, and I like to be able to be moved a little, albeit only a fraction. All I am being offered are very firm and uncomfortable cushions (tempur foam is too hard), and constant discussions about posture. My posture is shot, it is irredeemable, and therefore I want comfort, not textbook postural support for increased lifespan at the cost of comfort. My OT won't let me try a 4-cell Roho, and although I keep asking for gel/soft cushions, yesterday I was given a Vicair to try (yuck, hard, and today my hips are killing me). > > Please, if anyone has any ideas, I would be so grateful. I am so uncomfortable that typing has become really hard, everything is getting so hard now. > > Thanks for reading this, > > > > (big love and helloes to Lainie, and Sue, sorry for being such a crap communicator) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2003 Report Share Posted May 3, 2003 In a message dated 5/3/03 7:50:53 AM Central Daylight Time, skinupaspliff@... writes: > 3 " higher than the right - and I am in the UK (so a little limited on what > available). Oh, hips aren't level, but the rest of my body has compensated > over the years, so the point is - I am used to it. I hate the idea of being > trapped in a moulded seat - I fear it will feel like a straight-jacket, and > I like to be able to be moved a little, albeit only a fraction. I hear ya! They try that molded stuff with me... Have you tried gel cushions....or putting something soft (fluffy towel, sheep skin) on standard cushions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2003 Report Share Posted May 3, 2003 , I use the dual cell, high profile Roho which I find very comfortable. Why won't your OT let you try a Roho? I hope you find just the right cushion! It makes a big difference. Lori (40 y/o, married, Type II sma, peromobile use) Cushions Firstly, an apology, as I rarely ever write, but have lurked here for a long time. I have been going through an immense amount of pain for the past 5 months, along with getting weaker rather more quickly than I am used to. I am type 1/2, 37, female living with partner. Can anybody suggest any ideas for cushions that are not moulded or contoured? I have a pretty severe scoliosis which is fused (spinal fusion when I was 16) - my left hip is about 3 " higher than the right - and I am in the UK (so a little limited on what available). Oh, hips aren't level, but the rest of my body has compensated over the years, so the point is - I am used to it. I hate the idea of being trapped in a moulded seat - I fear it will feel like a straight-jacket, and I like to be able to be moved a little, albeit only a fraction. All I am being offered are very firm and uncomfortable cushions (tempur foam is too hard), and constant discussions about posture. My posture is shot, it is irredeemable, and therefore I want comfort, not textbook postural support for increased lifespan at the cost of comfort. My OT won't let me try a 4-cell Roho, and although I keep asking for gel/soft cushions, yesterday I was given a Vicair to try (yuck, hard, and today my hips are killi! ng me). Please, if anyone has any ideas, I would be so grateful. I am so uncomfortable that typing has become really hard, everything is getting so hard now. Thanks for reading this, (big love and helloes to Lainie, and Sue, sorry for being such a crap communicator) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2003 Report Share Posted May 3, 2003 I had molded cushions all through grade school, high school and part of college. Then I tried out a Roho. I would never go back to a molded cushion. The Roho conforms wherever I'm placed in my wheelchair seat, instead of having to be slid around until I'm in just the right position! Jenn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2003 Report Share Posted May 3, 2003 Thank you so much for replying so fast, I am touched >i have a sumed cushion which i find comfortable, though you might find it a >bit hard to start with. i think it is a gel cushion. I had a Sumed about 10 years ago, but the OT dept. (henceforth known as the " off-topic " dept.) haave no record of it, jusst as they have no record of the 2 Roho cushions I tried. I loved my Sumed, but It died a slimy death when it became quite solidified and began to leak in its old age... Lori >I use the dual cell, high profile Roho which I find very comfortable. > >Why won't your OT let you try a Roho? Because he seems to feel I need " postural support " - I fear he is trying to improve, in his opinion, my posture - I have spent 21 years working on my present posture - that is, I mean that given a soft enough cushion, I am a happy bunny. e_sma >Have you tried gel cushions....or putting something soft (fluffy towel, sheep >skin) on standard cushions. This is what I have been asking for, but I keep getting contoured stuff, like Jay or Flowtech I am sitting on a piece of 3 " foam bought from a local foam factory, amd what I am basically asking is for something which mimics foam, but doesn't bottom out. Being assymetrical, I don't fit into contoured stuff too well! Jenn >I had molded cushions all through grade school, high school and part >of college. Then I tried out a Roho. I would never go back to a >molded cushion. The Roho conforms wherever I'm placed in my >wheelchair seat, instead of having to be slid around until I'm in just >the right position! My experience with the Roho in the past was that it made me feel more floppy, but I know they now do 4 section ones, which in theory should work - if only Bob the in the OT dept. would work with me on this. What is really getting to me is that I feel I know my body best, and that my gut feelings are pretty much always right. My neck was getting really tired last year, so I asked whether I could try a neck brace to eliminate the need for me to constantly prop up my head. The OT dept. (wheelchair services) said it wasnt their area, and that I need to see an orthotist, which I then did. 2 months later my apppoitment came, and the orthotist said she couldn't help, but that the engineer there maybe could. They tried out the Whitmyer headrest which has a strap around the forehead (if anyone is interested http://www.whitbio.com/Pro%20Family%20Pages/Pro%20Dfs.html), and that worked great for just short bursts of support to set me up for a few hours without it. 6 months on and I am still waiting for it. It took 3 weeks for an emergency meeting to discuss my cushion, and then I was given the Vicair a week later, on loan. I am so grateful to you all for replying, it really has made me feel that I am not alone - I just wish I could borrow someones' spare cushion! Shame you are all so far away. To top it all, I also have a small patch of exema on the one hip that takes all the weight, and it flairs up with stress - right now, it's bleeding and so itchy. I only developed this when I ghave up smoking, grr! Thanks again, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2003 Report Share Posted May 4, 2003 I use a roho cushion. it works great for me. I have noticed I can not stay up and am 'floppy' if it has too much air. Actually it is more comfortable for me with no air. Sounds strange but its better for me. I do not hit the bottom. The 4 cell doesnt work for me. just regular old roho. You need to try the gel cushions and the roho 4-cell and any other kind until you get what works. I cant believe your OT wont let you try it. I always thought an OT's job was to make you comfortable. You can't do anything well if you're not comfortable. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2003 Report Share Posted May 5, 2003 Lainie, >I have a Varilite cushion. It's the best cushion that I have ever used. But >I haven't tried all the others. This one is a combination of air and gel. >It is 3 inches thick and it has a valve on one corner. You can open the >valve and it sucks air in ( by magic ) . Of course you have to get your >weight off of it for it to suck air in. When it's full you sit on it and >then let air out a little at a time until it is comfortable. You can >readjust it as many times and as often as necessary. Mine seem to last me >about 2 years before it needs to be replaced. I took a look at the website for the Varilite, but unfortunately I don't think it will do for me as I am so asymmetrical ('windswept' as they say, kinda romantic sounding , but it looks like a great cushion. I love the principal of being able to let the air out of it, like a Roho, until you are comfy. Hehehe, lasts 2 years? I've been trying to get a cushion that I can sit on for longer than 2 hours for over 4 years now! Lol Thanks for writing sweetie, I will be in touch when I can write more easily. Vickie, >, why won't your OT let you try a quad roho? I've had one forever and love it. Mine is a quad especially made for me with 3 " bubbles " lower than the rest. I just got it and it's saved me a lot of pain. You should push for it. IMHO. I can only think, now out of paranoia, that he really does place posture above comfort - I have read some studies online that discuss the 'comfort verses posture' and how '...if the optimum posture is achieved, it can prolong life expectancy'. I really am all for having a good life and not worrying about how long or short it is, quality, not quantity. Only my opinion for me, not judging anyone else. The OT basically says it's not in his 'remit' - which does seem to change from day to day. (forgive me if that's not your name, I am going by email addy) >I use a roho cushion. it works great for me. I have noticed I can not stay up and am 'floppy' if it has too much air. Actually it is more comfortable for me with no air. Sounds strange but its better for me. I do not hit the bottom. The 4 cell doesnt work for me. just regular old roho. You need to try the gel cushions and the roho 4-cell and any other kind until you get what works. I cant believe your OT wont let you try it. I always thought an OT's job was to make you comfortable. You can't do anything well if you're not comfortable. To be honest, I understand what you are saying about no air, purely from the standpoint that we all know our bodies best, and sometimes we are a contradiction. The point is, we SMAers are so very good at adapting, and these medical folk just cannot comprehend that we are more knowledgeable than them when it comes to knowing ourselves. Maybe it challenges them professionally or something. Whatever it is, I want to get past it really fast and get on with living, be able to spend a few hours not thinking about my sore butt, stiff hips and tired neck! I want to stop acting like a moany old lady and get on with my life! Maybe have enough energy to write here more often, and chat with friends online again - right now, typing more than a sentence takes so long, I start to forget what I was ranting about!! But thank you again for writing, it really does mean so much that you guys took the time and energy to write - and I am going to voice my request for trialing both gel and Roho cushions more strongly now that I know you have found comfort with them. I was wondering if I could open a poll, and maybe use the stats to back me up - would anyone mind? Huge hugs and great thanks, _________________________________________________________________ Add photos to your messages with MSN 8. Get 2 months FREE*. http://join.msn.com/?page=features/featuredemail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2003 Report Share Posted May 7, 2003 > > (big love and helloes to Lainie, and Sue, sorry for being such a crap communicator) Hey I know what it's like when you're uncomfortable and everything's a big effort. I can't believe your OT won't let you try the cushion you think may work, that's not on. I would definitely kick off, lol! I've been having probs sitting comfortably for a while, I've got an appointment with a " Special Seating " clinic next week so we'll see what they come up with. I'll get the " you need a moulded seat " speech but I don't want that for the same reason as you, I still want to move a teeny bit Tuftz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2003 Report Share Posted May 7, 2003 I just wanted to thank Vickie for the great link; I am also trying out Dragon Dictate, a 'borrowed' copy as it costs a fortune. Bit weird, talking to the PC, my dogs and cats think I'm nuts, and my b/f is trying to 'turn a deaf ear' to my witterings. It seems very quick to learn voice commands, and is great for macros. Good to hear from you Sue, good luck with the cushion clinic. What do you sit on at the moment? Take care, _________________________________________________________________ MSN 8 with e-mail virus protection service: 2 months FREE* http://join.msn.com/?page=features/virus Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2003 Report Share Posted May 7, 2003 , Do you think you could find a vendor who would let you try out a Roho for a few days? If you liked it, maybe you could bypass the OT and go directly to your doctor for a prescription. Lori Re: Cushions > > (big love and helloes to Lainie, and Sue, sorry for being such a crap communicator) Hey I know what it's like when you're uncomfortable and everything's a big effort. I can't believe your OT won't let you try the cushion you think may work, that's not on. I would definitely kick off, lol! I've been having probs sitting comfortably for a while, I've got an appointment with a " Special Seating " clinic next week so we'll see what they come up with. I'll get the " you need a moulded seat " speech but I don't want that for the same reason as you, I still want to move a teeny bit Tuftz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2003 Report Share Posted May 17, 2003 Sorry for taking so long to reply, I've been in so much pain that I was stuck in bed for a few days. Still no further along, the OT seems to take a week to get back to me each time I doubt whether my doc would be ok with a script as here (at least what I know of it where I live in England) they expect cushions to be assessed and funded for by the local Wheelchair Services. Plus, my GP is just about next to useless, I go to them when I need antibiotics when I am on my last gasp as they always try to fob me off with, " Well, it's your disability, so we can't really give you anything to help, it is what is to be expected " . And now my overhead hoist has broken down with no repair until Monday (they don't carry parts on their emergency vans - ha!), so my poor b/f is struggling with a very rusty, heavy old hydraulic one. But thank you for your help - it's nice to know I am not alone > , > > Do you think you could find a vendor who would let you try out a Roho for a > few days? If you liked it, maybe you could bypass the OT and go directly to > your doctor for a prescription. > > Lori > Quote Link to comment Share on other sites More sharing options...
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