I don't know if this has been mentioned before Goose(this is a long thread). Would a bead cushin help? Seems like it would make it much easier to shift from time to time. They make these with different size beads, Randy
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Goose,
Alternately, have you ever heard of a medical 'sand bed'? My hubby was on that for a long time also. I googled it but didn't find much. It is something like a very small amount of sand in tube like an air bed, add forced heated air = alternating pressure points. This would be for your bed, probably too heavy for your chair.
Shari
Alternately, have you ever heard of a medical 'sand bed'? My hubby was on that for a long time also. I googled it but didn't find much. It is something like a very small amount of sand in tube like an air bed, add forced heated air = alternating pressure points. This would be for your bed, probably too heavy for your chair.
Shari
Singed Eyebrows said:
Don't think it's come up, for all that it's a long thread, the seating is only a little bit of it that has come up recently... Haven't asked about the bead cushions, but I suspect it wouldn't work well as it would be producing a lot of very concentrated, hard pressure points that might be easier to shift on, but would do some significant damage in between shifts.
One of the problems that SCI patients have, which is very much a factor is that there is a lot of atrophy or wasting away of the muscles and a lot of the other tissues below the level of injury, leaving very little in the way of "natural padding" between the bones and the skin - if you were to feel your butt, I'd expect that you would have a fairly hard time telling just where your hip bones are, and that they would feel like there was a good bit of "meat" between them and your skin. When I feel my butt, I immediately feel the "Ischeal Tuberosities" or sitting bones, and it feels like they are right next to the skin - it is the skin getting pinched between the bones and the sitting surface that causes pressure sores, and hard surfaces are the worst in that they give the hardest "pinch"
Shari - I hadn't heard of the 'sand bed' you describe, but when I was in the rehab, I was on what they called a "low air loss" mattress that I think may be the modern high tech replacement - a synthetic air mattress made with a fabric that has a controlled amount of leakage and a pump to make up for it -between the air cushion effect of the leaking air under your body, and the give inherent in a low pressure air pillow, you had very good pressure distribution.
Gooserider
Goose, I suffer from severe pressure-related pain when I sit or lie down for too long. I have tried numerous pillows made of everything from regular foam to memory foam, hybrid pillows made of foam bits and synthetics, feather pillows, down pillows, straight synthetic fiber, you name it. They either compress hard and stiff or they "push back" (hard to explain to those who don't suffer with this) at my head and neck, causing me to awake in agony and unable to return to sleep. Then I discovered buckwheat hull (Sobakawa) pillows. They are the most comfortable material I have ever tried. They don't compress, they don't push back at you with force, they simply conform to your shape and stay that way. It addition, they offer excellent air circulation.
I imagine they work kind of like Sheri's "sand bed", only infinitely lighter. The down side is that they are small ("Japanese" size), rather expensive, they are noisy, and they have a relatively short life span. Eventually, the hulls break down and compact on you and you have to buy a new one. I wish I could afford to get an entire bed made from them because I think I might actually make it through the night if I did. As it is right now, my Simmons "Beauty Rest" with all of its 980 individual support coils becomes an ugly torture chamber come 3 AM. I'm sitting on one right now because my seat bones would be throbbing if I sat on just the upholstered computer chair.
I'd heartily recommend trying one. It may give you a new lease on life. Or you can buy just the buckwheat hulls and have someone sew a custom seat cushion for you.
http://www.amazon.com/Organic-Buckwheat-Hulls-5-lbs/dp/B002NVSCQI/ref=pd_sim_k_3
Best wishes.
I imagine they work kind of like Sheri's "sand bed", only infinitely lighter. The down side is that they are small ("Japanese" size), rather expensive, they are noisy, and they have a relatively short life span. Eventually, the hulls break down and compact on you and you have to buy a new one. I wish I could afford to get an entire bed made from them because I think I might actually make it through the night if I did. As it is right now, my Simmons "Beauty Rest" with all of its 980 individual support coils becomes an ugly torture chamber come 3 AM. I'm sitting on one right now because my seat bones would be throbbing if I sat on just the upholstered computer chair.
I'd heartily recommend trying one. It may give you a new lease on life. Or you can buy just the buckwheat hulls and have someone sew a custom seat cushion for you.
http://www.amazon.com/Organic-Buckwheat-Hulls-5-lbs/dp/B002NVSCQI/ref=pd_sim_k_3
Best wishes.
BK.
Have you tried a gel bed? I have gone through every type of matress imaginable exceot a Duxiana over the past 15 years and finally bought a gel bed a few months ago and am pretty happy with it (at least more than any of the other beds I have tried. Many hospitals use these beds for their burn victims to ease the pressure on thier sores.
(broken link removed to http://www.nexgel.com/technologies/technologies.htm)
Goose, not sure if that would be something that would be of benefit to you, also.
Have you tried a gel bed? I have gone through every type of matress imaginable exceot a Duxiana over the past 15 years and finally bought a gel bed a few months ago and am pretty happy with it (at least more than any of the other beds I have tried. Many hospitals use these beds for their burn victims to ease the pressure on thier sores.
(broken link removed to http://www.nexgel.com/technologies/technologies.htm)
Goose, not sure if that would be something that would be of benefit to you, also.
Seem to me that one could go broke pretty quick trying all these different 'technologies' eh? Wonder how many of them have a "try it for 6 months - return for any reason if you don't want to keep it for full refund" policy...
Slow1 said:
Tend to agree... I do appreciate all the suggestions, but it does seem a bit overwhelming - one reason I'm sort of inclined to stick with the stuff that the SCI rehab folks want to stick me on, however problematic some of it may seem from a comfort standpoint - at least what I've been on so far hasn't caused me any major injury, and is in theory made for my injury type - many of the other suggestions aren't made for SCI, or don't seem to want to talk about it...
Gooserider
wendell said:
Wendell, I've never heard of them before, but they seem to completely understand the concept of support materials "pushing back" at you. They even use that term in their explanation, so I don't feel quite so crazy now. My problem is likely from my weight. I've always been a real bull of a guy, short and built solid like a fireplug. The past ten years or so I've added a lot more mass to that already massive frame, and most beds just aren't built for guys like me. If I could get a good night's sleep, I just might have the energy to start working out again, but lately I feel like I'm on a downhill slide.
I just spent like $1200 on our new mattress, but I can shove it into the guest room if there is something better out there. How much was yours? We can only fit a queen-size bed in our layout, so I'll probably save there.
Goose, I don't mean to add to your overwhelmed feeling. Just thought for $30 you might give it a try. Might just be an occasional use thing to mix things up, pressure-wise. I assumed you'd run it by your rehab people first for possible bad effects. Maybe they know about the stuff. PM me if you get interested in one and it will be arranged. ;-)
Slow, I think I know who you mean with the "6 month trial" guarantee, but if you think I'm sleeping on a slab of soapstone, think again. %-P
This is where I got mine and they have their prices listed (fortunately, I got mine one sale!).
http://goldes.com/gel_beds/gb.html
They do make a version for those of additional substance. PM me if you're interested in losing some weight. I just lost a bunch and it was amazingly easy.
http://goldes.com/gel_beds/gb.html
They do make a version for those of additional substance. PM me if you're interested in losing some weight. I just lost a bunch and it was amazingly easy.
Gooserider, I've seen just a few posts from you on other threads. Hope you are doing OK and hanging in there. Is anything working? Are you feeling any better? Don't want to make you go into it if you don't want to discuss, but I do want you to know that many of your virtual friends on here are still sending our warm thoughts, prayers, vibes, positive energy, and whatever we can send your way. You've shown great courage and strength in this adversity and I hope you can continue to heal and improve.
ETA God Bless you and Mary Anne too!
ETA God Bless you and Mary Anne too!
Thanks Tickbitty, I probably ought to post a bit of an update anyway...
Overall I'm feeling a bit less pain most of the time. Biggest problem seems to be trying (still) to find a comfortable cushion for longer term sitting in my chair...
One of the bigger changes has been that I have gotten off the Fentanyl patch that I had been on since I was injured. Fentanyl is a nasty opioid, several hundred times more potent than morphine, and also quite addictive. I decided to get off it because it seemed to me like it wasn't doing a lot for me besides making me feel sleepy all the time, and because it was a major hassle to get my prescriptions for it, thanks to our gov't's stupid regulations - Everything else, I was able to get renewals over the phone, and have the info sent directly to the pharmacy - for Fentanyl, I had to physically go to the Dr's office EVERY month to pick up a physical paper prescription (minimum 2-3 hours round trip, and the insurance company was getting sticky about picking up the paratransit costs).
I quit cold turkey, and essentially ended up spending most of a week in bed with some serious muscle cramps and other discomfort. Now that I've been off it for more than a month, I still feel like I want it, but I'm also a lot more alert, and everything seems clearer, I'm no longer rolling around in a fog. The GF says that I'm also a lot nicer to deal with - one of the reported side effects of the patch is to make one nasty...
Otherwise not a lot of physical changes - pretty much no useful voluntary function below my chest, though I have limited feeling, and can do things like wiggle my left little toe, and make a couple of muscles in my thighs go twitch (but not do anything useful) - no predictions for a lot of improvement in that regard either....
I am FINALLY starting to get to work with the Mass. Rehab folks, it sounds like I will shortly be getting a Driving Evaluation, which is the first step in getting an adapted van so that I can actually drive myself around again (other than making the run to the local grocery store in my power chair, which hardly counts...) They are also talking about getting me some more education, if I can figure out what to study - I'm thinking in terms of electrical or mechanical engineering, I want to make stuff, not sure just what...
The other BIG thing I'm going to be trying to talk them into is a "Standing Wheelchair" - this is a chair that has a bunch of mechanical linkages in it that allows the seat to straighten out so that it brings the user up to a nearly vertical "standing" position. Some of the fancier models also have tilt and recline functions and even things like seat elevators that can boost you up a foot or so... These things have lots of health benefits, but to me the biggest advantage is that it would allow me to stand up to do various stuff involving using tools in a shop, and so on. My theory is that if I end up in any sort of shop environment, it would probably be easier to make me stand than it would be to make the shop tools and equipment "accessible" for a sitting wheelchair. The problem is that standing chairs are VERY expensive, some costing over 40K, which makes it very difficult to get insurance to reimburse for them....
Gooserider
Overall I'm feeling a bit less pain most of the time. Biggest problem seems to be trying (still) to find a comfortable cushion for longer term sitting in my chair...
One of the bigger changes has been that I have gotten off the Fentanyl patch that I had been on since I was injured. Fentanyl is a nasty opioid, several hundred times more potent than morphine, and also quite addictive. I decided to get off it because it seemed to me like it wasn't doing a lot for me besides making me feel sleepy all the time, and because it was a major hassle to get my prescriptions for it, thanks to our gov't's stupid regulations - Everything else, I was able to get renewals over the phone, and have the info sent directly to the pharmacy - for Fentanyl, I had to physically go to the Dr's office EVERY month to pick up a physical paper prescription (minimum 2-3 hours round trip, and the insurance company was getting sticky about picking up the paratransit costs).
I quit cold turkey, and essentially ended up spending most of a week in bed with some serious muscle cramps and other discomfort. Now that I've been off it for more than a month, I still feel like I want it, but I'm also a lot more alert, and everything seems clearer, I'm no longer rolling around in a fog. The GF says that I'm also a lot nicer to deal with - one of the reported side effects of the patch is to make one nasty...
Otherwise not a lot of physical changes - pretty much no useful voluntary function below my chest, though I have limited feeling, and can do things like wiggle my left little toe, and make a couple of muscles in my thighs go twitch (but not do anything useful) - no predictions for a lot of improvement in that regard either....
I am FINALLY starting to get to work with the Mass. Rehab folks, it sounds like I will shortly be getting a Driving Evaluation, which is the first step in getting an adapted van so that I can actually drive myself around again (other than making the run to the local grocery store in my power chair, which hardly counts...) They are also talking about getting me some more education, if I can figure out what to study - I'm thinking in terms of electrical or mechanical engineering, I want to make stuff, not sure just what...
The other BIG thing I'm going to be trying to talk them into is a "Standing Wheelchair" - this is a chair that has a bunch of mechanical linkages in it that allows the seat to straighten out so that it brings the user up to a nearly vertical "standing" position. Some of the fancier models also have tilt and recline functions and even things like seat elevators that can boost you up a foot or so... These things have lots of health benefits, but to me the biggest advantage is that it would allow me to stand up to do various stuff involving using tools in a shop, and so on. My theory is that if I end up in any sort of shop environment, it would probably be easier to make me stand than it would be to make the shop tools and equipment "accessible" for a sitting wheelchair. The problem is that standing chairs are VERY expensive, some costing over 40K, which makes it very difficult to get insurance to reimburse for them....
Gooserider
It's good to hear from you Goose. I hope that standing chair becomes a reality & you don't need to have the pain from sitting all the time. Have you considered meditation to help in your healing & pain management? I find it worthwhile, Randy
Quitting Fentanyl cold turkey like that is quite an accomplishment...so the recovery continues. thanks for the report Goose, Godspeed.
Glad to hear from you Goose. Its great to hear that you are going at this overwhelming challenge with your usual clinical tenacity.
As far as what to study, I work in a large industry focused on energy performance consulting. Might not be as sexy as designing the next great thing but there is demand for engineers that can evaluate energy performance and put together a package to reduce consumption while improving the quality of life for the buildings inhabitants. I doubt this market will go away especially in the Northeast with our older energy hog buildings in our lifetime.
Best wishes to you.
As far as what to study, I work in a large industry focused on energy performance consulting. Might not be as sexy as designing the next great thing but there is demand for engineers that can evaluate energy performance and put together a package to reduce consumption while improving the quality of life for the buildings inhabitants. I doubt this market will go away especially in the Northeast with our older energy hog buildings in our lifetime.
Best wishes to you.
It's good to hear from you Goose . . . you have never been forgotten by many of us here . . . thanks Tickbitty for checking in with the Gooserider.
Goose, you might want to inquire about Sheepskin as bedding, and padding for your wheelchair.
This is what the hospital recommended for my father, who was a spinal cord injury patient.
Apparantly, because of it's natural hollow fibres, it wicks excess moisture from the skin helping to prevent bedsores.
Here's a link with some info, I am not promoting this specific company, just providing info.
(broken link removed)
This is what the hospital recommended for my father, who was a spinal cord injury patient.
Apparantly, because of it's natural hollow fibres, it wicks excess moisture from the skin helping to prevent bedsores.
Here's a link with some info, I am not promoting this specific company, just providing info.
(broken link removed)
Goose, good to hear that you are off the drug, going cold turkey, wow. Hope some of the ideas here from friends work out for you. Glad you are back on the forum. Warren 
Thank you for the update! Glad you were successful in figuring out how and when to kick that particular pain med, that's quite an achievement. I'm standing in admiration for all you have managed to do so far and for your forward thinking attitude. I imagine that's going to serve you really well in whatever new paths you choose to take. Here's hoping you get all the assistance and equipment it takes to keep you going forward the way you have done so far!
I'm sorry the "butt lab" hasn't come through for you yet for help with the seating, I was hoping that would work for you, but it does sound like you are in pretty good hands with the rehab folks.
Engineering sounds like it could have good potential for you, perhaps you could end up working on things in assisted technology for yourself and others in similar situations. Necessity being the mother of invention and all.
Take care and know you've got a lot of folks here on your side.
I'm sorry the "butt lab" hasn't come through for you yet for help with the seating, I was hoping that would work for you, but it does sound like you are in pretty good hands with the rehab folks.
Engineering sounds like it could have good potential for you, perhaps you could end up working on things in assisted technology for yourself and others in similar situations. Necessity being the mother of invention and all.
Take care and know you've got a lot of folks here on your side.
Find a chair and myself and others will start chipping in... every penny counts but I am sure we can put a dent in it with enough people and time!
Hi Goose,
I haven't ever posted on this thread but have followed the whole thing....
I saw this new wheelchair today and thought of you.
It won a design competition, designed at MIT for use in third world countries, sort of an ATV wheelchair/ that can also be used in the home.
They say they are working on a "first world" version but the "third world" one looks pretty interesting to me. Don't know if it will become available here but it might be interesting to keep an eye on. If you google it you will find many many articles....
http://www.core77.com/blog/sustaina...he_disabled_in_developing_countries_18507.asp
Rooting for you!!
Suzanne
I haven't ever posted on this thread but have followed the whole thing....
I saw this new wheelchair today and thought of you.
It won a design competition, designed at MIT for use in third world countries, sort of an ATV wheelchair/ that can also be used in the home.
They say they are working on a "first world" version but the "third world" one looks pretty interesting to me. Don't know if it will become available here but it might be interesting to keep an eye on. If you google it you will find many many articles....
http://www.core77.com/blog/sustaina...he_disabled_in_developing_countries_18507.asp
Rooting for you!!
Suzanne
Thanks for the post SZ, I've heard a lot of references to the MIT bike but this is the first time I've seen such a detailed writeup on it... A couple of potential issues that I see with it though, could cause problems...
1. Most people get their chairs via insurance - I don't know how the insurance companies would react to paying above "standard chair" prices to fund their buy/build model, but I suspect they'd be a problem...
2. More significantly I see that sticking out front wheel as a real potential problem for indoor use... Part of my biggest issues with getting around in the house involves the size of my chair - I need at least the width of the chair, and then have to worry about being able to turn around, which is heavily influenced by the length of the chair - currently my manual chair isn't much longer than my seated leg length, plus another foot or so for the wheels in back... It basically isn't possible to build a chair much shorter as the rear push wheels basically need to be under the center of your butt in order to keep from going over backwards (my chair is set up for minor "performance" so it is relatively easy to wheelie, and I HAVE managed to flip over backwards - NOT FUN!) As it is, many of the places I go in the house are "one-way" in that I can't spin around, and some also have tight right hand corners - I'm not at all sure I could get into places like my bedroom with that long front end, as I don't know if it could make the corner...
There are a pretty sizable number of off-road designed wheelchairs that use a similar style drive system, and all seem to have the problem of being to big for use as a primary indoor chair... One of the issues is the drive system - part of the game in wheelchair design is to keep the overall width as narrow as possible, as every fraction of an inch means more doors that can be gotten through, and other similar accessibility concerns. My manual chair is sized to be just barely wide enough for my butt when I'm dressed, plus maybe an inch to allow for pressure relief movements. I then have my clothing guards, and maybe 1/2 - 3/4" between those and the inside edge of the wheels... I don't think there is any way they'd have ROOM to put the drive system in without making the chair wider - even the bicycle hubs mentioned are wider than the standard chair wheel. As an example of how extreme this can be, Spinergy, which is a company that specializes in high end performance wheels for chairs and pedal bikes, has a system where they mount the push rims with a flexible rubber bond, so that they can be squeezed in to get an extra 1-2" in order to get through a door... I can't justify them, as we were able to get enough room for me to get through the first floor of the house by removing ALL the doors... When we redid the bathroom, that door was replaced by the accessible sized 36" wide door, and once I get through putting poly on it, we will probably mount it, but not use it all that much as it will still be a pain to open and close... Because of the way the hall is laid out, I don't think we could redo the bedroom doors for more width, but I can deal with them as long as the doors are removed. We might try those fully opening hinges, but it's a pretty low priority.
Gooserider
1. Most people get their chairs via insurance - I don't know how the insurance companies would react to paying above "standard chair" prices to fund their buy/build model, but I suspect they'd be a problem...
2. More significantly I see that sticking out front wheel as a real potential problem for indoor use... Part of my biggest issues with getting around in the house involves the size of my chair - I need at least the width of the chair, and then have to worry about being able to turn around, which is heavily influenced by the length of the chair - currently my manual chair isn't much longer than my seated leg length, plus another foot or so for the wheels in back... It basically isn't possible to build a chair much shorter as the rear push wheels basically need to be under the center of your butt in order to keep from going over backwards (my chair is set up for minor "performance" so it is relatively easy to wheelie, and I HAVE managed to flip over backwards - NOT FUN!) As it is, many of the places I go in the house are "one-way" in that I can't spin around, and some also have tight right hand corners - I'm not at all sure I could get into places like my bedroom with that long front end, as I don't know if it could make the corner...
There are a pretty sizable number of off-road designed wheelchairs that use a similar style drive system, and all seem to have the problem of being to big for use as a primary indoor chair... One of the issues is the drive system - part of the game in wheelchair design is to keep the overall width as narrow as possible, as every fraction of an inch means more doors that can be gotten through, and other similar accessibility concerns. My manual chair is sized to be just barely wide enough for my butt when I'm dressed, plus maybe an inch to allow for pressure relief movements. I then have my clothing guards, and maybe 1/2 - 3/4" between those and the inside edge of the wheels... I don't think there is any way they'd have ROOM to put the drive system in without making the chair wider - even the bicycle hubs mentioned are wider than the standard chair wheel. As an example of how extreme this can be, Spinergy, which is a company that specializes in high end performance wheels for chairs and pedal bikes, has a system where they mount the push rims with a flexible rubber bond, so that they can be squeezed in to get an extra 1-2" in order to get through a door... I can't justify them, as we were able to get enough room for me to get through the first floor of the house by removing ALL the doors... When we redid the bathroom, that door was replaced by the accessible sized 36" wide door, and once I get through putting poly on it, we will probably mount it, but not use it all that much as it will still be a pain to open and close... Because of the way the hall is laid out, I don't think we could redo the bedroom doors for more width, but I can deal with them as long as the doors are removed. We might try those fully opening hinges, but it's a pretty low priority.
Gooserider
A quick comment or two...
I can't imagine how frustrating all this must be for you.....You are obviously a very strong person dealing with all that and kicking the painkiller patch too.
Strong... and a critical thinker....
Maybe you are up for a project??? You're in Billerica?? - from Worcester County myself.
From the article I posted..
"As for the second track, the LFC Sport, is currently in the prototyping stage. The Mobility Lab is already going out to wheelchair users in the Boston region to determine the interest in the idea"
Seems to me you might have alot of valuable feedback for such a project, just a thought...
I don't know if they are having people test the protypes or what but maybe it would get you in on one. Some guy collect cars...
The website...
(broken link removed to http://mlab.mit.edu/lfc/Chair.html)
The email...
[email protected]
Cheers Suzanne
ps. what about some kind of widow shade instead of doors...
Should have responded to this sooner... It is tough for me to do much in the way of projects in the house, and because of the cold weather I can't do much in the garage or outdoors (and the snow has collapsed my portable garage, and possibly my metal storage shed) but I hope spring will be here one of these months...
I did finally write to the folks doing that MIT chair project. Got a nice response back thanking me and saying that I've been added to their list of potential beta testers and survey participants... They also said that they may come up with a shorter 4-wheel version of the fancy chair. On the 3rd world version, they felt the longer wheelbase and big front caster offered enough advantages outside that it was worth the length penalty indoors.
As to the idea of a window shade instead of a door, it might work, though I could see it being a challenge to come up with something that both works for a standing AB person, and a person in a chair... We've also thought of doing some sort of hanging bead type curtain, but really have found that the door thing isn't all that big of a deal - after 15+ years, it isn't like we aren't used to each other, and we don't have enough guests for it to be a big issue... Anybody that's really paranoid about it can go upstairs to the master bedroom, or downstairs to the basement 1/2 bath... Call it a low priority concern I guess.
Gooserider
I did finally write to the folks doing that MIT chair project. Got a nice response back thanking me and saying that I've been added to their list of potential beta testers and survey participants... They also said that they may come up with a shorter 4-wheel version of the fancy chair. On the 3rd world version, they felt the longer wheelbase and big front caster offered enough advantages outside that it was worth the length penalty indoors.
As to the idea of a window shade instead of a door, it might work, though I could see it being a challenge to come up with something that both works for a standing AB person, and a person in a chair... We've also thought of doing some sort of hanging bead type curtain, but really have found that the door thing isn't all that big of a deal - after 15+ years, it isn't like we aren't used to each other, and we don't have enough guests for it to be a big issue... Anybody that's really paranoid about it can go upstairs to the master bedroom, or downstairs to the basement 1/2 bath... Call it a low priority concern I guess.
Gooserider
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