[QUAD-L] raising awareness
Hello all- This is my first post. I am trying to raise awareness concerning spinal cord injuries. I am organizing an information booth at the Valpariso, Indiana Popcorn Festival(http://www.popcornfest.org/popcorn.html), on September 10, 2005. At this booth I would like to inform the public about; injury prevention, injury levels/function, complete vs incomplete, the daily life of a spinal cord injured person, current programs, therapies, research, and legislation effecting the quality of life and the prospect of a cure for paralysis, and everything in between. This seems like the next natural step in my life. My neck was broken when I was thrown from a mechanical bull, at the 2003 Porter County fair. I sustained a C6/C7 incomplete spinal cord injury, leaving me with paralysis from the armpits down. I have since started a spinal cord injury support group and gone to Washington DC to rally for the Christopher Reeve Paralysis Act. Along with the booth, I am still hoping to have a float in the parade. Unfortunately, out of the fifteen or so SCIs that I have met in my area, only five are willing to do the parade route with me. My idea is to show how many SCIs there are in the region and pull them to the information both. This doesn't play well when you only have five people rolling down the road. Would you be interested?... or interested in coming to the support group meetings? We meet on the first Friday of every month at 1pm, in Valparaiso, at Porter Hospital's Education and Rehabilitation Center, 1401 Calumet Ave. If you are interested in any of this I can be reached at [EMAIL PROTECTED] jOE__Do You Yahoo!?Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com
[QUAD-L] SureHands- Batteries
A wise consumer is the best shopper! W In a message dated 8/18/05 11:38:12 AM, [EMAIL PROTECTED] writes: << I have the one you transfer room to room and it works great but my batteries just went out after 3 years and they want almost $400 to replace 3-8 Volt batteries! What a joke I found them for about $100 for all three locally. >>
Re: [QUAD-L] Question about Pressure Sore Starting.
I had/have that same problem with moisture. We have put a strip of gauze in the fold area,but this new cushion is just amazing! Altho I am taking care to stay out of this very hot weather, this Ride Custom Cushion does what it says! www.ridedesigns.com phone 303-781-1676 toll free 866-781-1633 Based in Sheridan Colorado. take care, Dana and Rocco [EMAIL PROTECTED] - Original Message - From: "Lori Michaelson" <[EMAIL PROTECTED]> To: "David K. Kelmer" <[EMAIL PROTECTED]>; "Quad" Sent: Tuesday, August 16, 2005 7:04 PM Subject: Re: [QUAD-L] Question about Pressure Sore Starting. Thanks for asking Dave My husband has to keep an eye on them DAILY and it seems to always need one cream or another. I have a tilt-n-space chair and DO use it but my problems "down there twinxt the legs' is not a pressure problem. Lori Michaelson C4/5 complete quad, 25 years post Tucson, AZ ---Original Message--- From: David K. Kelmer Date: 08/15/05 13:03:57 To: Lori Michaelson; Quad Subject: Re: [QUAD-L] Question about Pressure Sore Starting. Hi Lori, Great advice! How is the area around where your wounds were at doing? Mine are healed but I'm working on getting a new chair so that I'm able to 'Tilt' when I'm up to keep the skin from cracking. Not having my right leg and part of my pelvic bone makes shifting harder for me because it takes away my positioning when I'm up. The new chair should help keep my position good while still allowing me to shift. I'm looking at the Quickie® SmartSeat chair. http://www.sunrisemedical.com/products/product_detail jsp?FOLDER%3C%3Efolder_id=54823&PRODUCT%3C%3Eprd_id=289507&ASSORTMENT%3C%3Eas _id=104083&bmUID=1123544380245 With Love, CtrlAltDel aka Dave C4/5 Complete - 29 Years Post Texas, USA Lori Michaelson <[EMAIL PROTECTED]> wrote: Dan, As you know ... the tailbone is a pointy area and can break open super fast. My last 2 sores were from moisture yet raged out of control and laying me up 6 months each! . So, if that can happen to me on a NON-BONY area ... keep that pressure off! Watch it intensely! My two vulnerable areas now are where my last 2 sores were ... in the crease between my butt and thigh. It's red a lot so we alternate with skin protectants. Dave K. and I use LANTISEPTIC .. a good skin preotectant/barrier. Other times I'll use Desitin as it acts rashy red down there. Bag Balm toughens skin too. Watch your ass! No pun intended! Lori Michaelson C4/5 complete quad, 25 years post Tucson, AZ ---Original Message--- From: [EMAIL PROTECTED] Date: 08/13/05 13:46:08 To: quad-list@eskimo.com Subject: [QUAD-L] Question about Pressure Sore Starting. Hi Gang ! I'm starting to get a red spot up near my tailbone area.. I have not had a sore since intensive care 8 years ago when 1st injured. I know to do more PRESSURE RELIEVES but should i put bettadine or anything on the area ?? Thanks for input I'm hoping I can stop it from getting worse... I don't need new depressions now...Due to wife sick of being my care-giver . Thanks ! Dan
Re: [QUAD-L] Am I the only eBay shopper here?
Wow, was it estate type of sale? My father asked someone if they would put a painting and a few other things from an estate--it went for $700. They had n idea! Something else brought in a couple hundred, I think it was another painting. Dana and Rocco [EMAIL PROTECTED] - Original Message - From: "Greg" <[EMAIL PROTECTED]> To: "Dana Miller" <[EMAIL PROTECTED]>; Sent: Tuesday, August 16, 2005 6:08 PM Subject: Re: [QUAD-L] Am I the only eBay shopper here? Doesn't Medicare pay for gloves? I find lots of cool things on Ebay, my coolest things so far are a silver shoe button hook from the early 1800's that is stamped with the shoemaker's name and busines name... It was my -grandfather's brother. Got it for $15. The other was an origional piece of art that was done by my 3rd cousin (I never met them or anything) I got it for $20 and it's at the frame shop right now. Greg - Original Message - Heavens no! I just look for different things! I got some great deals on cases of exam clubs. Plus got some really nice pants from ebay--3 pairs of jeans for 99 cents! There was nothing wrong with them. The other jeans, kahkis and slacks were about $7 a pair. With the Medicaid cuts the w/c's may not be so cheap anymore! take care, Dana and Rocco [EMAIL PROTECTED] - Original Message - From: "Ol' Man River" <[EMAIL PROTECTED]> To: "Approval Department" <[EMAIL PROTECTED]>; Sent: Monday, August 15, 2005 7:08 PM Subject: [QUAD-L] Am I the only eBay shopper here? > Invacare Ranger II Front-Wheel Drive Power WheelchairItem number: > 6200238188 > > Do any of you guys buy power chairs from eBay? The price certainly is > right. I have bought 3 for under 700$ each. They work fine. I'm > looking at one now that is EZLOCK certified so I can drive with it. My > Pride Jets are not certified. DHL will ship it driveway to driveway > for > 85$. Pretty good deal I think. Dave > > > > > Dave > (what's a quad?) > > - > Start your day with Yahoo! - make it your home page
Re: [QUAD-L] SureHands
Greg, Make sure you're putting the hooks on the inside rather than outside of you legs, this will help if you're not. Mark ---Original Message--- From: Greg Date: 08/18/05 14:26:33 To: Lester Smith; quad-list@eskimo.com Subject: Re: [QUAD-L] SureHands I like it a lot. I use the gab bar not the sling. It works well, but my butt hangs down and it does not grab my chest well. The thigh bar slides to my knees. I need to get a non skid surface on the thigh bars. Greg - Original Message - From: Lester Smith To: quad-list@eskimo.com Sent: Wednesday, August 17, 2005 8:42 AM Subject: [QUAD-L] SureHands Hello everybody, I am sure that there must be a few quads out there that have or have used the SureHands transfer system. Could I get your impressions of how well or bad this system works for you and your caregivers? Thanks, Lester-Denver C4-c5 quad 17 years post
Re: [QUAD-L] SureHands
I like it a lot. I use the gab bar not the sling. It works well, but my butt hangs down and it does not grab my chest well. The thigh bar slides to my knees. I need to get a non skid surface on the thigh bars. Greg - Original Message - From: Lester Smith To: quad-list@eskimo.com Sent: Wednesday, August 17, 2005 8:42 AM Subject: [QUAD-L] SureHands Hello everybody, I am sure that there must be a few quads out there that have or have used the SureHands transfer system. Could I get your impressions of how well or bad this system works for you and your caregivers? Thanks, Lester-Denver C4-c5 quad 17 years post
Re: [QUAD-L] SureHands
Wheel, I have the one you transfer room to room and it works great but my batteries just went out after 3 years and they want almost $400 to replace 3-8 Volt batteries!What a joke I found them for about $100 for all three locally. Mark ---Original Message--- From: [EMAIL PROTECTED] Date: 08/17/05 19:23:23 To: [EMAIL PROTECTED]; quad-list@eskimo.com Subject: [QUAD-L] SureHands Are you referring to the 1st generation with 110volt hard wired lifts Are you referring to the 2nd generation with 110/24 volt lifts Are you referring to the 3rd generation with 24 volt lift that can be transfer'd from one room to another on different tracks? W In a message dated 8/17/05 10:45:10 AM, [EMAIL PROTECTED] writes: << I am sure that there must be a few quads out there that have or have used the SureHands transfer system. Could I get your impressions of how well or bad this system works for you and your caregivers? >> .
Re: [QUAD-L] RE: SureHands
I bought that one 3 years ago. Mark ---Original Message--- From: [EMAIL PROTECTED] Date: 08/18/05 09:55:30 To: [EMAIL PROTECTED]; quad-list@eskimo.com Subject: Re: [QUAD-L] RE: SureHands The second generation is very good but obsolete. 3rd generation allows for several separate tracks mounted it different rooms. The lifter is battery operated and moves from track to track as needed. This industry has come a full circle in the last 10 years. 3rd generation is much safer as you are always in contact with low voltage. W In a message dated 8/18/05 9:22:16 AM, [EMAIL PROTECTED] writes: << Hi, I think I am looking at the 2nd generation. The surehand system I am looking at, would only have one track in my bedroom. Lester >> .
Re: [QUAD-L] SureHands
I had some grant money to use when I moved out of the nursing home to pay for modifications and that's how I aquired mine. Mark ---Original Message--- From: Liz Date: 08/18/05 09:59:01 To: [EMAIL PROTECTED]; [EMAIL PROTECTED]; [EMAIL PROTECTED]; [EMAIL PROTECTED]; [EMAIL PROTECTED]; quad-list@eskimo.com Subject: Re: [QUAD-L] SureHands Did everyone pay for the surehands out of pocket? I'd love to have one. It would make my life a bit more easy! - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] ; [EMAIL PROTECTED] ; [EMAIL PROTECTED] ; [EMAIL PROTECTED] ; quad-list@eskimo.com Sent: Thursday, August 18, 2005 10:20 AM Subject: Re: [QUAD-L] SureHands I use a Waverly-Glen lift.we were using a full sling that had to stay under me while in my chair, I hated it. But by me being a c-6 and have arm movement I got a 2 piece strap type sling, one goes under my legs or butt and the other goes around my back and under my arms..I love this , it goes on or completely off in seconds. Dan
Re: [QUAD-L] SureHands
I had to pay part of my lift myself because the insurance companies would only pay for a lesser lift that I did not want. Jim
Re: [QUAD-L] SureHands
Vocational Rehab paid for my overhead lift and my remote door opener... they were not able to find me a job , but by trying and getting evaluated they will help , depending on your states Vocational Rehab. Later I found a part time job on my own, that I still do to help get extra income. Dan
Re: [QUAD-L] SureHands
Did everyone pay for the surehands out of pocket? I'd love to have one. It would make my life a bit more easy! - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] ; [EMAIL PROTECTED] ; [EMAIL PROTECTED] ; [EMAIL PROTECTED] ; quad-list@eskimo.com Sent: Thursday, August 18, 2005 10:20 AM Subject: Re: [QUAD-L] SureHands I use a Waverly-Glen lift.we were using a full sling that had to stay under me while in my chair, I hated it. But by me being a c-6 and have arm movement I got a 2 piece strap type sling, one goes under my legs or butt and the other goes around my back and under my arms..I love this , it goes on or completely off in seconds. Dan
Re: [QUAD-L] RE: SureHands
The second generation is very good but obsolete. 3rd generation allows for several separate tracks mounted it different rooms. The lifter is battery operated and moves from track to track as needed. This industry has come a full circle in the last 10 years. 3rd generation is much safer as you are always in contact with low voltage. W In a message dated 8/18/05 9:22:16 AM, [EMAIL PROTECTED] writes: << Hi, I think I am looking at the 2nd generation. The surehand system I am looking at, would only have one track in my bedroom. Lester >>
Re: [QUAD-L] SureHands
I use a Waverly-Glen lift.we were using a full sling that had to stay under me while in my chair, I hated it. But by me being a c-6 and have arm movement I got a 2 piece strap type sling, one goes under my legs or butt and the other goes around my back and under my arms..I love this , it goes on or completely off in seconds. Dan
[QUAD-L] RE: SureHands
Hi, I think I am looking at the 2nd generation. The surehand system I am looking at, would only have one track in my bedroom. Lester -Original Message- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Wednesday, August 17, 2005 6:22 PM To: [EMAIL PROTECTED]; quad-list@eskimo.com Subject: SureHands Are you referring to the 1st generation with 110volt hard wired lifts Are you referring to the 2nd generation with 110/24 volt lifts Are you referring to the 3rd generation with 24 volt lift that can be transfer'd from one room to another on different tracks? W In a message dated 8/17/05 10:45:10 AM, [EMAIL PROTECTED] writes: << I am sure that there must be a few quads out there that have or have used the SureHands transfer system. Could I get your impressions of how well or bad this system works for you and your caregivers? >>
Re: [QUAD-L] Mattresses
In a message dated 8/18/2005 5:06:58 AM Eastern Standard Time, [EMAIL PROTECTED] writes: Are those the mattresses that they sometimes get you in the hospital that just look like foam? No. They're good quality foam. BillLeesburg, FLC-6 Incomplete since 7/20/68AOL/AIM & Yahoo ID: MikeyBird3Stupidity is NOT a handicap! Park elsewhere!
Re: [QUAD-L] SureHands
Dave, The nylon sling that I use from Surehands does not go underneath your bottom. Two straps go underneath your legs and the top wraps around your chest so you do not have to wiggle the sling out from underneath your bottom. Jim
Re: [QUAD-L] Pain and AD
When I was in rehab and I was being manually catheterized before I was able to use condom catheters I had a perpetual UTI. Any time before 3-5 PM I would start to get AD, severe shakes, sweats and posturing of the arms. I take oral Baclofen so I do not know anything about the Baclofen pump but I would seriously consider getting a second opinion from another urologist because of the kidney and bladder stones. Jim
Re: [QUAD-L] Mattresses
Are those the mattresses that they sometimes get you in the hospital that just look like foam?Dana (C 4-5, 31 years post, 51, KC)
RE: [QUAD-L] Pain and AD
John, Thanks for your response. We watch the BP like a hawk. Gabe takes procardia for BP. I was hoping that I could keep some pain down with the baclofen and then he wouldn’t have AD and wouldn’t need to take procardia. Gabe even has BP stuff equipment and meds in his back pack. Gabe has a syrnyx (sp?) at the level of his injury. It isn’t shunted. The info on calcium deposit is good info. I’ll take it and the rest of the info to the doc with Gabe. Thanks, Lana Gabe’s mom From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Wednesday, August 17, 2005 2:46 PM To: quad-list@eskimo.com Subject: Re: [QUAD-L] Pain and AD Pain is a big time cause of AD. Sometimes it takes a real intuitive Dr. to find the source of the pain and relieve it. After 29 years I've got some deformities from my original accident that can cause AD. Calcium tends to deposit randomly on quads. It leaches from the bones and turns to stones everywhere else. When it does attache to existing bone it often forms spurs which causes a glorious arthritis pain. If had spurs removed because they punctured the skin. I knew a quad that had a stomach ulcer that claimed he had a pain similar to what you described and it took awhile to pinpoint. Keep an eye on his blood pressure during AD and try to have something (baclophin is probably not the best thing to give him) to bring down his BP if it gets to climbing too high. This gives you a chance to try to find the source of the AD. A full bowel or bladder can cause the same AD response. AD kills most quads. I take a strong pain killer several times a day. I don't get a buzz, but I don't shake and spasm all over. I really hate when my cousin calls me Dr. Strangelove. When the flow of spinal fluid is interrupted it can cause small cyst-like things on the spinal cord (syringomyelia) that can cause a myriad of inexplicable pains. Best Wishes, john In a message dated 8/17/2005 10:59:44 A.M. Eastern Daylight Time, [EMAIL PROTECTED] writes: Gabe's Mom, i know exactly what he is going through. i had the same problem for a number of years. serious pain (in my hips, back, tailbone), dysreflexia, horrible spasms. i really thought i was going to die and everyone that came around me just felt bad because no one could help. i was always taking pain pills. i also tried the baclofen pump, with poor results and numerous hospital stays trying to find out why it wasn't doing what it is supposed to do. i only had the pump for a couple of years and i had to have a lot of surgeries. (die studies, re-gluing, pump changing) i also found the pump area would hurt to the touch. after i had the pump removed spinal fluid kept leaking out of my back through the stitches for about a week. what level is your son? how long has it been since his accident? is he incomplete or complete? what kind of wheelchair does he have? does it tilt? What kind of cushion? does he have a pressure sore? answer these questions and I'll see if i can come up with some ideas. i rarely have pain anymore but i still get dysreflexia sometimes and i've found that if i drink plenty of water, more than what i'm thirsty for sometimes, that i don't get dysreflexia as much. luke c-5/6 incomplete, 5yrs post, got hurt when i was 17 riding a dirtbike In a message dated 8/16/2005 9:00:10 PM Central Standard Time, [EMAIL PROTECTED] writes: I have posted several times about Gabe, my son and a problem that he is having with autonomic dysreflexia (AD) and pain. It started with AD in the late afternoon and some bladder and bowel spasms would follow. The Ad would resolve when he would lay down. Now he has serious pain. We have been to all the doc’s. The urologist says he has two kidney stones. One in each kidney. She thinks they are to small to cause the problem, but says it’s possible. Neurosurgeon says his shunts are ok and he does not think anything in the spine could cause this. The abdominal ct shows a small gall stone in the neck of the gall bladder. The surgeon doubts it’s the cause. So I started thinking about when was the last time Gabe had pain like this. It was before he got his baclofen pump and the central cord pain, skin pain and spasms about killed him. He got a new pump last summer and almost died from an allergic reaction to an antibiotic. So he went two months last summer without his pump when he was in the hospital. He was drugged on morphine for most of the time. He was too ill from the allergic reaction to replace the pump. So his baclofen pump dose now is a lot lower then it was before last summer. So the question is…. could the pain that is going on now be central cord pain and the AD be a response to the central cord pain. I’ve made an apt for him to see his rehab doc. Until then I’m going to give him oral baclofen everyday as an experiment. Wh
RE: [QUAD-L] Pain and AD
Luke, Gabe is 32 years old and 10 years post and he has a C-4-5-6-incomplete injury. It was caused by pressure from a seizure producing a spinal cord stroke following a laminectomy. His electric chair tilts and that helps. We fought with the insurance co. and he will get a new manual called tilt in space soon. He gets very worn out when he uses the e-chair so that limits his activities. He uses a ROHO-quatro cushion. The first thing we checked on was a pressure sore and UTI. While his baclofen pump has been a pain in the ass sometimes it has reduced pain significantly. He is on his third pump. Hope I answered the questions. I’m desperate here. Any help you can give. Lana Gabe’s mom From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Wednesday, August 17, 2005 8:58 AM To: [EMAIL PROTECTED]; quad-list@eskimo.com Subject: Re: [QUAD-L] Pain and AD Gabe's Mom, i know exactly what he is going through. i had the same problem for a number of years. serious pain (in my hips, back, tailbone), dysreflexia, horrible spasms. i really thought i was going to die and everyone that came around me just felt bad because no one could help. i was always taking pain pills. i also tried the baclofen pump, with poor results and numerous hospital stays trying to find out why it wasn't doing what it is supposed to do. i only had the pump for a couple of years and i had to have a lot of surgeries. (die studies, re-gluing, pump changing) i also found the pump area would hurt to the touch. after i had the pump removed spinal fluid kept leaking out of my back through the stitches for about a week. what level is your son? how long has it been since his accident? is he incomplete or complete? what kind of wheelchair does he have? does it tilt? What kind of cushion? does he have a pressure sore? answer these questions and I'll see if i can come up with some ideas. i rarely have pain anymore but i still get dysreflexia sometimes and i've found that if i drink plenty of water, more than what i'm thirsty for sometimes, that i don't get dysreflexia as much. luke c-5/6 incomplete, 5yrs post, got hurt when i was 17 riding a dirtbike In a message dated 8/16/2005 9:00:10 PM Central Standard Time, [EMAIL PROTECTED] writes: I have posted several times about Gabe, my son and a problem that he is having with autonomic dysreflexia (AD) and pain. It started with AD in the late afternoon and some bladder and bowel spasms would follow. The Ad would resolve when he would lay down. Now he has serious pain. We have been to all the doc’s. The urologist says he has two kidney stones. One in each kidney. She thinks they are to small to cause the problem, but says it’s possible. Neurosurgeon says his shunts are ok and he does not think anything in the spine could cause this. The abdominal ct shows a small gall stone in the neck of the gall bladder. The surgeon doubts it’s the cause. So I started thinking about when was the last time Gabe had pain like this. It was before he got his baclofen pump and the central cord pain, skin pain and spasms about killed him. He got a new pump last summer and almost died from an allergic reaction to an antibiotic. So he went two months last summer without his pump when he was in the hospital. He was drugged on morphine for most of the time. He was too ill from the allergic reaction to replace the pump. So his baclofen pump dose now is a lot lower then it was before last summer. So the question is…. could the pain that is going on now be central cord pain and the AD be a response to the central cord pain. I’ve made an apt for him to see his rehab doc. Until then I’m going to give him oral baclofen everyday as an experiment. What do you guys think? I’m asking you guys because Gabe can’t tell me everything that’s going on. When it comes to this problem he can just tell me about the pain. Help! Gabe’s mom
