Re: [QUAD-L] Question about lockdown systems.
I have a manual chair with ez lock > On 02/19/2024 5:53 PM EST wheelch...@aol.com wrote: > > > > Greetings, > I've never seen a manual wheelchair, using a single post on an EZ Lock > System, for driving or riding. I have seen double wheel securement for > riding wheelchairs. The design of an EZ lock system was designed for drivers > and riders using powered chairs. I would consider going directly to EZ Lock > Securement and getting an answer directly from them rather than a dealer. > Best Wishes. > > > On Monday, February 19, 2024 at 03:33:35 PM CST, SHIRLEY BELL > wrote: > > > Hi Shelly, are you in the new England area? > > > On 02/19/2024 2:40 PM EST Shelly Kerchner wrote: > > > > > > hi to all ! Past two years been having health issues/skin breakdown, > > rotator cuff surgery, recovery, etc. so I have been absent from this group! > > I hope everyone is well! > > > > Currently, I’m driving my motorized chair using the easy lock system. > > > > I want to be able to use my manual chair and was advised that I would need > > the new Q straint lock down system ( state agreed to install and pay for > > the pin for my manual chair. ) the reason being because the easy lock does > > not make a pin for my manual chair. > > > > One last thought, the salesman/company who recommended the new lock down > > system at First told me it be no problem for me to use my current motorized > > chair with the new system( qstraint) > > > > Then weeks later flipped on me and said because of liability the only chair > > I could drive from would be my manual chair, and could no longer use the > > motorized chair………. > > > > ( many months ago also he told me this is just between you and I, but we > > looked at the pins and there’s no difference between the pens except colors > > and the only trouble I may run into is if I had an accident and tried to > > come back on the company who made the pin because I had did not have the > > pin the manufacturer requires us to use. > > > > It’s a cumbersome process to navigate so I would appreciate any one willing > > to share their experience and would appreciate some assistance! > > > > Thanks ahead of time !! > > > > Shelly Kerchner > > > > > > > > Sent from Yahoo Mail for iPad > > https://mail.onelink.me/107872968?pid=nativeplacement&c=Global_Acquisition_YMktg_315_Internal_EmailSignature&af_sub1=Acquisition&af_sub2=Global_YMktg&af_sub3=&af_sub4=10604&af_sub5=EmailSignature__Static_ > > >
Re: [QUAD-L] Question about lockdown systems.
Hi Shelly, are you in the new England area? > On 02/19/2024 2:40 PM EST Shelly Kerchner wrote: > > > hi to all ! Past two years been having health issues/skin breakdown, rotator > cuff surgery, recovery, etc. so I have been absent from this group! I hope > everyone is well! > > Currently, I’m driving my motorized chair using the easy lock system. > > I want to be able to use my manual chair and was advised that I would need > the new Q straint lock down system ( state agreed to install and pay for the > pin for my manual chair. ) the reason being because the easy lock does not > make a pin for my manual chair. > > One last thought, the salesman/company who recommended the new lock down > system at First told me it be no problem for me to use my current motorized > chair with the new system( qstraint) > > Then weeks later flipped on me and said because of liability the only chair I > could drive from would be my manual chair, and could no longer use the > motorized chair………. > > ( many months ago also he told me this is just between you and I, but we > looked at the pins and there’s no difference between the pens except colors > and the only trouble I may run into is if I had an accident and tried to come > back on the company who made the pin because I had did not have the pin the > manufacturer requires us to use. > > It’s a cumbersome process to navigate so I would appreciate any one willing > to share their experience and would appreciate some assistance! > > Thanks ahead of time !! > > Shelly Kerchner > > > > Sent from Yahoo Mail for iPad > https://mail.onelink.me/107872968?pid=nativeplacement&c=Global_Acquisition_YMktg_315_Internal_EmailSignature&af_sub1=Acquisition&af_sub2=Global_YMktg&af_sub3=&af_sub4=10604&af_sub5=EmailSignature__Static_ >
Re: [QUAD-L] BONE DENISITY
I gree, I tied some shots, they did help but would have to keep doing and they have side effects. My primary said the same. plus no weight bearing. > On 12/27/2023 3:00 PM EST Eric Olson wrote: > > > This is just my opinion, but I think you hit the nail on the head. Without > weight bearing, do these drugs do anything? They were not developed to be > used for people that are not weight bearing, Just my 2 cents. > > On Wed, Dec 27, 2023 at 2:35 AM Dana mailto:wraydan...@gmail.com> wrote: > > > I wonder why they took me off Fosamax, maybe my bone density had not > > improved. I don’t know if our bone density can ever improve since we aren’t > > able to bear weight. What do you think? Dana > > > > On Thu, Dec 14, 2023 at 8:35 AM Noel > mailto:swl...@gmail.com> wrote: > > > > > I was diagnosed with osteoporosis about 10 years ago, high risk of > > > fracture. I've been taking Fosamax ever since. I had another bone density > > > test a couple of months ago, to see if the Fosamax was working. She > > > didn't give me the results of the latest bone density test, just tell me > > > to keep taking the Fosamax. > > > > > > When I was first diagnosed, I started using an RT300 FES bike after > > > reading that it had strengthened bones on many people that have used one > > > (notably Christopher Reeve). Used it for a couple of years, puts a lot of > > > pressure on the bones. But, after a couple of years, I developed severe > > > pain in my knees and had to stop. I've tried everything for the pain in > > > my knees, prescription and nonprescription, nothing seems to help. > > > > > > On Wed, Dec 13, 2023 at 1:54 AM Dana > > mailto:wraydan...@gmail.com> wrote: > > > > > > > Yes I have taken for several years. I need to get a DEXA scan before I > > > > can get another injection. This is my third type of treatment for > > > > osteoporosis. I was injured at 20 and the state would not pay for a > > > > standing frame like they suggested at rehab, this caused me to get > > > > osteoporosis. > > > > > > > > I go to a specialist at KU, I have pain in my shoulders and neck and > > > > she suggested I use Biofreeze. It was a prescription and now the more > > > > effective Brand over the counter. I order from Amazon. > > > > Because of the Osteoporosis I have not been able to get surgery on my > > > > broken hip broken foot or arm. I did have Foote drop surgery and that’s > > > > the one that gave me gangrene, a wound vac 2 months and then A skin > > > > graft. I have no meat on the back of my heel and part of the bone is > > > > gone, because the doctor left the external fixator on seven days > > > > without checking. leaving it on too long broke my foot. After I get my > > > > next DEXA, I will tell you my status. I don’t know how well it improves > > > > but if you read about it online it says that you need to take it. It > > > > gives pretty grim prognosis to Osteoporosis. I want to hear from > > > > everybody on the list who has been diagnosed with osteoporosis and what > > > > treatment you have been getting and the results of the treatment > > > > Gratefully yours, Dana C 4-5, complete,ileo-conduit,trach, 49 years > > > > post. I so enjoy the Quad-List. Thank you Jim for Starting this > > > > productive group of survivors.I am grateful for this Quad-List. We are > > > > a few That contribute but United. > > > > > > > > On Sun, Dec 10, 2023 at 3:00 PM Paul Jacobson > > > mailto:pjacob...@san.rr.com> wrote: > > > > > > > > > > > > > > Has anyone taken PROLIA for better bone density? Can you > > > > > > > > > > share your results and thoughts? Thank you! > > > > > > > > > > > > > > > > > > > > Paul c5/6 > > > > > > > > > > San Diego, CA > > > > > > > > > > > > > > >
Re: [QUAD-L] bladder update
what is a PMNR doc? When you used a night bag you must have used a floley. Also, when you capped off the s pubic, did you use a reg cath to drain it intermittently? Also, where did you have these surgeries? I am in RI sorry to keep asking, it is confusing. I read online that with a supra pub you can only use a foley, no capping off, and intermittent unless you have the one you have now. I never get UTIs with the Foley so thought the sup pub would be the same. my doctor says less infections with it? > On 12/12/2023 7:28 PM EST Michelle Harkness > wrote: > > > Hey Shirley, I actually capped mine off and drained it periodically - trying > to sustain some bladder capacity. It was tiny though, and only could hold > about 100-150 cc's before I had to empty it. I did use a night bag when > sleeping to make things easier though. > > I would speak with your quad doc (PMNR doc) and a Female Pelvic Medicine and > Reconstructive Surgery doc (that's who did my Mitrofinoff). Between them > both, they should have the knowledge to tell you what your body is able to > have done to help you out the most. The whole purpose of mine was to expand > my bladder, help with infections and give me more independence. What was > right for me might not be right for you. I was just surprised at all of the > options and applications they have in the reconstructive surgery side of > things to help. so there might be a different fit that works better for you. > > > I've personally always avoided an indwelling catheter, based on my personal > feelings and the suggestions of every urologist I've had. Even my > reconstructive doc isn't a fan of the supra pubic catheters because of the > colonization of bacteria that occurs. The quad life we live is fraught with > tough decisions, but they do have a lot of things to try and help! > > On Tue, Dec 12, 2023 at 5:49 PM SHIRLEY BELL mailto:sbell...@cox.net> wrote: > > > Hi Michelle, one question, when you did supra pubic did you use a Foley > > catheter? you would have had to? Please let me know thanks! > > > > > On 12/11/2023 9:52 PM EST Michelle Harkness > > mailto:hotwheelsmiche...@gmail.com> wrote: > > > > > > > > > Hey Shirley! I've been on this page forever and learned lots from y'all, > > > but I tend to keep kinda quiet. Not sure what your situation is exactly, > > > but I've been a C5-6 quad for 30 years and I had always done intermittent > > > cathing, relying on someone else for help with it. In February of this > > > year, I finally took the plunge and got a Mitrofinoff with bladder > > > augmentation. I had tried a suprapubic for about 6 months, but hated it > > > and the multiple never ending infections it caused, so I started looking > > > more into the Mitrofinoff then. I can now do my own cathing almost all > > > of the time, through a stoma in my belly button that I use a male 16" > > > catheter for. The bladder augmentation helped wonders, and I was pretty > > > unfamiliar with what that was, or what wonders it could do when I > > > received it. It helps absorb the bladder spasms, gives you more capacity > > > and my doc said it helps lessen infections somehow (still trying to > > > figure that out). The only draw back is they use your bowel for the > > > augmentation, which in turn causes lots of goobers in your urine (doc > > > says the bowel still does what its supposed to do). But it's super nice > > > to not have to lay down 4 times a day to use the restroom, and basically > > > pee wherever I want to! > > > > > > Have an amazing day! > > > > > > Michelle > > > > > > On Mon, Dec 11, 2023 at 3:58 PM wheelch...@aol.com > > > mailto:wheelch...@aol.com mailto:wheelch...@aol.com> > > > wrote: > > > > > > > > > > > Thanks for the update. The bladder, over time, for those with > > > > indwelling caths, will/can shrink to the size of a walnut, compared to > > > > what it used to be. When you consider the size of the cath, plus the > > > > balloon, inside a walnut. there is not much room for urine to collect > > > > and it may pass quicker. > > > > Best Wishes. > > > > > > > > On Monday, December 11, 2023 at 02:34:15 PM CST, SHIRLEY BELL > > > > mailto:sbell...@cox.net> wrote: > > > > > > > > > > > > Hi all, well I had my cystoscopy and all he found was a shrunken > > > > bladder.
Re: [QUAD-L] bladder update
Hi Michelle, one question, when you did supra pubic did you use a Foley catheter? you would have had to? Please let me know thanks! > On 12/11/2023 9:52 PM EST Michelle Harkness > wrote: > > > Hey Shirley! I've been on this page forever and learned lots from y'all, but > I tend to keep kinda quiet. Not sure what your situation is exactly, but > I've been a C5-6 quad for 30 years and I had always done intermittent > cathing, relying on someone else for help with it. In February of this year, > I finally took the plunge and got a Mitrofinoff with bladder augmentation. I > had tried a suprapubic for about 6 months, but hated it and the multiple > never ending infections it caused, so I started looking more into the > Mitrofinoff then. I can now do my own cathing almost all of the time, > through a stoma in my belly button that I use a male 16" catheter for. The > bladder augmentation helped wonders, and I was pretty unfamiliar with what > that was, or what wonders it could do when I received it. It helps absorb > the bladder spasms, gives you more capacity and my doc said it helps lessen > infections somehow (still trying to figure that out). The only draw back is > they use your bowel for the augmentation, which in turn causes lots of > goobers in your urine (doc says the bowel still does what its supposed to > do). But it's super nice to not have to lay down 4 times a day to use the > restroom, and basically pee wherever I want to! > > Have an amazing day! > > Michelle > > On Mon, Dec 11, 2023 at 3:58 PM wheelch...@aol.com mailto:wheelch...@aol.com > mailto:wheelch...@aol.com> wrote: > > > > > Thanks for the update. The bladder, over time, for those with indwelling > > caths, will/can shrink to the size of a walnut, compared to what it used to > > be. When you consider the size of the cath, plus the balloon, inside a > > walnut. there is not much room for urine to collect and it may pass > > quicker. > > Best Wishes. > > > > On Monday, December 11, 2023 at 02:34:15 PM CST, SHIRLEY BELL > > mailto:sbell...@cox.net> wrote: > > > > > > Hi all, well I had my cystoscopy and all he found was a shrunken bladder. > > That is what is causing spasms on and off and rejecting catheters on and > > off. Not lasting as long. They are going to change my meds to see if that > > helps. Botox is an option as well. 47 years of indwelling catheter use has > > taken a toll. Not much they can do but I am looking into it. There is an > > external catheter option called a pur wick for women of course but I have > > doubts about it. I am trying not to worry but geez, not great. A suprapubic > > may be an option, not a cure but may be easier for me and my caretakers to > > deal with this. Hope you all doing ok, quad life is an ongoing challenge > > for sure. Have a great holiday season.Shirley If you want to see how I make > > my living check out my Etsy shop here. > > https://www.etsy.com/shop/ShirleyBell?ref=seller-platform-mcnav > > >
Re: [QUAD-L] bladder update
Thank you Michelle. I don't think I would be a candidate for this because I used a foley all these yrs but I will ask. Good luck to us all on this quad journey! > On 12/11/2023 9:52 PM EST Michelle Harkness > wrote: > > > Hey Shirley! I've been on this page forever and learned lots from y'all, but > I tend to keep kinda quiet. Not sure what your situation is exactly, but > I've been a C5-6 quad for 30 years and I had always done intermittent > cathing, relying on someone else for help with it. In February of this year, > I finally took the plunge and got a Mitrofinoff with bladder augmentation. I > had tried a suprapubic for about 6 months, but hated it and the multiple > never ending infections it caused, so I started looking more into the > Mitrofinoff then. I can now do my own cathing almost all of the time, > through a stoma in my belly button that I use a male 16" catheter for. The > bladder augmentation helped wonders, and I was pretty unfamiliar with what > that was, or what wonders it could do when I received it. It helps absorb > the bladder spasms, gives you more capacity and my doc said it helps lessen > infections somehow (still trying to figure that out). The only draw back is > they use your bowel for the augmentation, which in turn causes lots of > goobers in your urine (doc says the bowel still does what its supposed to > do). But it's super nice to not have to lay down 4 times a day to use the > restroom, and basically pee wherever I want to! > > Have an amazing day! > > Michelle > > On Mon, Dec 11, 2023 at 3:58 PM wheelch...@aol.com mailto:wheelch...@aol.com > mailto:wheelch...@aol.com> wrote: > > > > > Thanks for the update. The bladder, over time, for those with indwelling > > caths, will/can shrink to the size of a walnut, compared to what it used to > > be. When you consider the size of the cath, plus the balloon, inside a > > walnut. there is not much room for urine to collect and it may pass > > quicker. > > Best Wishes. > > > > On Monday, December 11, 2023 at 02:34:15 PM CST, SHIRLEY BELL > > mailto:sbell...@cox.net> wrote: > > > > > > Hi all, well I had my cystoscopy and all he found was a shrunken bladder. > > That is what is causing spasms on and off and rejecting catheters on and > > off. Not lasting as long. They are going to change my meds to see if that > > helps. Botox is an option as well. 47 years of indwelling catheter use has > > taken a toll. Not much they can do but I am looking into it. There is an > > external catheter option called a pur wick for women of course but I have > > doubts about it. I am trying not to worry but geez, not great. A suprapubic > > may be an option, not a cure but may be easier for me and my caretakers to > > deal with this. Hope you all doing ok, quad life is an ongoing challenge > > for sure. Have a great holiday season.Shirley If you want to see how I make > > my living check out my Etsy shop here. > > https://www.etsy.com/shop/ShirleyBell?ref=seller-platform-mcnav > > >
Re: [QUAD-L] bladder update
How can you have this Mitrofinoff surgery after yrs of a folley? > On 12/12/2023 4:12 PM EST Michelle Harkness > wrote: > > > Eric - I was TERRIFIED of the Mitrofinoff surgery for about 28 years. I had > never had a surgery other than my spinal fusion, so I was not on board with > signing up for anything major! I'm also on blood thinners because of blood > clots/pulmonary embolism and I'm overweight, so add those two layers of suck > to the mix as well. About 2 months after the pandemic hit my gallbladder > decided it didn't like me, so I had to have emergency surgery to get that > taken out (in the hospital completely ALONE for 5 days). I was scared, being > my first big surgery, but it gave me a bit of confidence that the unknown > wasn't as scary as previously thought. I've also done childbirth as a quad, > without an epidural (not by choice, it just happened that way) so I maybe had > a bit of false confidence added in the mix? My quad doc also said that I > wanted to have it when my body could better recover before I got too old, > considering I just keep getting older... Either way, it was an approximate 4 > week recovery with the Mitrofinoff, but my least favorite and worst part was > the emptying of the bowels the day before. A day of bed rest and a crazy > amount of poo to handle! I did about 2 weeks of bed rest healing and another > 2 of light duty at home. No driving for a month and no car rides for a > month. My bowel bounced back really well from having the 10" cut out of it > for the augmentation, and my incision from belly button to top of pubic line > also healed much faster than I anticipated. My only regret was not getting > it done sooner and I kicked my own butt for waiting so long! Especially when > I have so much more freedom with it. If interested, I would see which docs > are in your area. I actually declined the first doc (who did my suprapubic) > as he was an ass and did the surgery a bit different. My second doc I went > to was soo much better and even had experience watching Dr. Mitrofinoff > perform his surgery. That doc knew his stuff and had an excellent procedure. > I had a 3 hour surgery and was out of the hospital and home in 3 days. > > I'm interested to know how the gentamicin works, as I still get way to many > UTI"S. I flush my bladder every other night, just to help keep my new > goobers out and in the hopes of keeping infections lower. > > On Tue, Dec 12, 2023 at 2:24 PM Eric Olson mailto:whee...@wi.rr.com> wrote: > > > I had my supra pubic done a couple decades ago and it certainly makes > > things easier for my care givers. I still have problems with uti's. I was > > thinking about the Mitrofinoff,but it is a no joke surgery. I have started > > doing gentamicin bladder irrigations. Gentamicin is an antibiotic. It's > > not supposed to cause antibiotic resistance the way antibiotics taken > > systemically do. I will let everyone know how that goes. I may still > > have to go to the Mitrofinoff at some point, but that surgery scares me > > > > On Mon, Dec 11, 2023 at 2:34 PM SHIRLEY BELL > mailto:sbell...@cox.net> wrote: > > > > > Hi all, well I had my cystoscopy and all he found was a shrunken bladder. > > > That is what is causing spasms on and off and rejecting catheters on and > > > off. Not lasting as long. They are going to change my meds to see if that > > > helps. Botox is an option as well. 47 years of indwelling catheter use > > > has taken a toll. Not much they can do but I am looking into it. There is > > > an external catheter option called a pur wick for women of course but I > > > have doubts about it. I am trying not to worry but geez, not great. A > > > suprapubic may be an option, not a cure but may be easier for me and my > > > caretakers to deal with this. Hope you all doing ok, quad life is an > > > ongoing challenge for sure. Have a great holiday season.Shirley If you > > > want to see how I make my living check out my Etsy shop here. > > > https://www.etsy.com/shop/ShirleyBell?ref=seller-platform-mcnav > > > > > >
[QUAD-L] bladder update
Hi all, well I had my cystoscopy and all he found was a shrunken bladder. That is what is causing spasms on and off and rejecting catheters on and off. Not lasting as long. They are going to change my meds to see if that helps. Botox is an option as well. 47 years of indwelling catheter use has taken a toll. Not much they can do but I am looking into it. There is an external catheter option called a pur wick for women of course but I have doubts about it. I am trying not to worry but geez, not great. A suprapubic may be an option, not a cure but may be easier for me and my caretakers to deal with this. Hope you all doing ok, quad life is an ongoing challenge for sure. Have a great holiday season.Shirley If you want to see how I make my living check out my Etsy shop here. https://www.etsy.com/shop/ShirleyBell?ref=seller-platform-mcnav
Re: [QUAD-L] PLAN F PLANS
never heard of? > On 11/30/2023 3:11 AM EST Dana wrote: > > > What is plan F, As I have never heard of before. Thank you Paul > > On Wed, Nov 29, 2023 at 5:25 PM Paul Jacobson mailto:pjacob...@san.rr.com> wrote: > > > > > Hi, it is that time of the year where I need to renew Plan F. > > > > Does anyone know where I can find simple cost comparisons? > > > > > > > > Thank you, > > > > > > > > Paul > > > > C5/6 Injured 11/05/03 > > > > > > >
Re: [QUAD-L] indwelling urinary catheter problems
Thanks everyone, My Dr does want a sample when I change the catheter again. I just did and this time things are ok, right now. don't want to try to change again as that's when it goes south. > On 10/25/2023 1:30 PM EDT Eric Olson wrote: > > > just happened to run across this article. Looks like you have a few of the > signs of an infection > > https://www.hollister.com/en/continencecare/continencelearningcenter/livingwithaneurologicalcondition/7signsthatyoumayhaveaurinarytractinfection > > On Wed, Oct 25, 2023 at 10:25 AM SHIRLEY BELL mailto:sbell...@cox.net> wrote: > > > Hi all, anyone have an indwelling Catheter for 40 or so years and had > > severe issues on and off with spasms and incontinence resulting in changing > > even new catheters until one works? It's hard to explain but not good. I > > take the max on spasm pills. Can't get in to see Dr for a few weeks, wanted > > to do research before. Would a supra pubic help with this? Any help would > > be appreciated. Thanks, Shirley > > >
[QUAD-L] indwelling urinary catheter problems
Hi all, anyone have an indwelling Catheter for 40 or so years and had severe issues on and off with spasms and incontinence resulting in changing even new catheters until one works? It's hard to explain but not good. I take the max on spasm pills. Can't get in to see Dr for a few weeks, wanted to do research before. Would a supra pubic help with this? Any help would be appreciated. Thanks, Shirley
Re: [QUAD-L] PROLIA INJECTIONS - BONE LOSS
Hi Dana, I had something years back, shots of ? I don't get bone scans anymore. I feel what is the use? > On 10/24/2023 2:34 AM EDT Dana wrote: > > > I get them, I don’t really know how effective They are. I am months behind on > getting mine because I need A new dexis. sorry for the spelling error. I have > had three different types of treatment. I have had her shots, the infusion > and now Prolia. My bone loss is always worse.I appreciate everyone’s > responses. Dana > > On Sat, Sep 30, 2023 at 8:47 PM Paul Jacobson mailto:pjacob...@san.rr.com> wrote: > > > > > Has anyone had PROLIA injections for bone loss? If so, how did it work for > > you? > > > > Any side effects? > > > > > > > > Thank you! Paul c5/6 > > >
Re: [QUAD-L] Support groups
Great Shelly, I am in. I don't know how to set up zoom so if you could? I think Dana would like this as well. Any others? > On April 27, 2023 at 11:59 AM Shelly Kerchner > wrote: > > I think that’s a wonderful idea. I’m very much interested. I am soon to > be 17 years post and this would have been very helpful for me early on and > quite honestly even today! it’s always great to connect with others and share > our experience strength and hope!!! > > I have learned how to start a meeting in zoom. Just haven’t done it for a > while. Currently about to start my Adaptive yoga teacher training class for > the next three hours so I don’t know that I’ll be available the rest of the > day, but I’ll keep checking in to see if this is something you ladies would > like to do! > > Have a great rest of your day! > > Shelly > > > > Sent from Yahoo Mail for iPhone https://overview.mail.yahoo.com/?.src=iOS > > > > On Thursday, April 27, 2023, 11:44 AM, SHIRLEY BELL > wrote: > > > > I agree, I just got set up to do zoom with a webcam. > Could we start a Zoom support group? A women's group would be great also. > > > > > > > > > On April 26, 2023 at 7:05 PM Jeffrey Gaede > > wrote: > > > > > > I also feel like I've been on this site a lifetime, so why is > > > there rarely anything to say or do here anymore. It feels that way. Weeks > > > go by with nothing. We could provide our own best advice for people with > > > SCI. The article was nice but was there really much you didn't already > > > know? > > > > > > On Wednesday, April 26, 2023 at 04:01:50 PM PDT, Don Price > > > wrote: > > > > > > > > > Here's the article: > > > > > > https://newmobility.com/best-advice-for-people-with-sci-from-people-with-sci/?mc_cid=dc8e2691df&mc_eid=e1907d9c04 > > > > > > > > > > > > On Sunday, April 23, 2023 at 10:46:19 PM MST, Dana > > > wrote: > > > > > > > > > I want to see the article. I love this group and I love Jim > > > for creating this group. > > > > > > On Thu, Apr 20, 2023 at 12:16 PM Don Price > > > mailto:donpric...@yahoo.com > wrote: > > > > > > > > > > I agree, Danny. I’m very thankful > > > for Jim and this group. And I also agree that there are many other > > > options for people to connect these days. I hope you all are doing well > > > and connecting with other people. > > > > > > > > Ed, that New Mobility article is awesome thank you for > > > > sharing it! > > > > > > > > Don. > > > > > > > > > > > > > > > > > On Apr 17, 2023, at 2:29 PM, Danny Hearn > > > > mailto:ddh...@sbcglobal.net > wrote: > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > I joined the list in > > > > 1998, for years this site was really busy...nowdays so many on the list > > > > have passed away, plus I guess many use other sites and things like > > > > facebook and etc. In my early years as a Quad this site and folks on it > > > > really helped me a lot, I'm glad Jim had a quad-listi'm not sure if > > > > there are other sites for quads or nothope you all are doing well. > > > > ! Dan H.*** > > > > > > > > > > On Monday, April 17, 2023 at 04:14:50 PM CDT, > > > > > SHIRLEY BELL mailto:sbell...@cox.net > wrote: > > > > > > > > > > > > > > > I read this and thought not enough advice. where > > > > > can we get more conversations going? > > > > > > > > > > > > > > > > > > > > > On April 17, 2023 at 4:47 PM > > > > > Edward Tessier > > > > mailto:e...@artecopartners.com > wrote: > > > > > > > &
Re: [QUAD-L] Support groups
I agree, I just got set up to do zoom with a webcam. Could we start a Zoom support group? A women's group would be great also. > On April 26, 2023 at 7:05 PM Jeffrey Gaede wrote: > > I also feel like I've been on this site a lifetime, so why is there > rarely anything to say or do here anymore. It feels that way. Weeks go by > with nothing. We could provide our own best advice for people with SCI. The > article was nice but was there really much you didn't already know? > > On Wednesday, April 26, 2023 at 04:01:50 PM PDT, Don Price > wrote: > > > Here's the article: > > https://newmobility.com/best-advice-for-people-with-sci-from-people-with-sci/?mc_cid=dc8e2691df&mc_eid=e1907d9c04 > > > > On Sunday, April 23, 2023 at 10:46:19 PM MST, Dana > wrote: > > > I want to see the article. I love this group and I love Jim > for creating this group. > > On Thu, Apr 20, 2023 at 12:16 PM Don Price mailto:donpric...@yahoo.com > wrote: > > > > I agree, Danny. I’m very thankful for Jim and this group. > And I also agree that there are many other options for people to connect > these days. I hope you all are doing well and connecting with other people. > > > > Ed, that New Mobility article is awesome thank you for sharing it! > > > > Don. > > > > > > > > > On Apr 17, 2023, at 2:29 PM, Danny Hearn > > mailto:ddh...@sbcglobal.net > wrote: > > > > > > > > > > > > > > > > > > > > > > > > > > > > > I joined the list in 1998, for years this > > site was really busy...nowdays so many on the list have passed away, plus I > > guess many use other sites and things like facebook and etc. In my early > > years as a Quad this site and folks on it really helped me a lot, I'm glad > > Jim had a quad-listi'm not sure if there are other sites for quads or > > nothope you all are doing well. ! Dan H.*** > > > > > > On Monday, April 17, 2023 at 04:14:50 PM CDT, SHIRLEY BELL > > > mailto:sbell...@cox.net > wrote: > > > > > > > > > I read this and thought not enough advice. where can we get > > > more conversations going? > > > > > > > > > > > > > On April 17, 2023 at 4:47 PM Edward Tessier > > > mailto:e...@artecopartners.com > wrote: > > > > > > > > Thanks Don, all of us need support now and then. We > > > > appreciate your offer. > > > > > > > > A lot of you probably already saw this article in new > > > > mobility. I think it's worth posting the link here because it focuses > > > > exclusively on long-term SCI. the article sounded, at least to me, as > > > > a bunch of wise quads and para sharing the benefits of their experience > > > > with people more recent to their disability. I would've liked to hear > > > > more advice specifically geared towards managing long-term disability, > > > > along the lines of many conversations on quad list. still, it was > > > > reaffirming for the magazine to simply gather people with long-term > > > > SCI-- a population that often goes overlooked or worse, is assumed not > > > > to exist at all. > > > > > > > > > > > > https://newmobility.com/best-advice-for-people-with-sci-from-people-with-sci/?mc_cid=dc8e2691df&mc_eid=e1907d9c04 > > > > > > > > https://newmobility.com/best-advice-for-people-with-sci-from-people-with-sci/?mc_cid=dc8e2691df&mc_eid=e1907d9c04 > > > > > > > > > > > > Best Advice For People with SCI From People with SCI > > > > https://newmobility.com/best-advice-for-people-with-sci-from-people-with-sci/?mc_cid=dc8e2691df&mc_eid=e1907d9c04 > > > > > > > > > > > > When I was a newly minted T10 para, I recall a > > > > conversation with a friend who was three years post-injury, a T6 para, > > > > who had also become a mentor. He flew hang gliders, sailed, water > > > > skied…http://newmobility.com > > > > > > > > > > > > > > > > > > > >
Re: [QUAD-L] Support groups
love this group as well!! > On April 24, 2023 at 1:46 AM Dana wrote: > > I want to see the article. I love this group and I love Jim > for creating this group. > > On Thu, Apr 20, 2023 at 12:16 PM Don Price mailto:donpric...@yahoo.com > wrote: > > > > I agree, Danny. I’m very thankful for Jim and this group. > And I also agree that there are many other options for people to connect > these days. I hope you all are doing well and connecting with other people. > > > > Ed, that New Mobility article is awesome thank you for sharing it! > > > > Don. > > > > > > > > > On Apr 17, 2023, at 2:29 PM, Danny Hearn > > mailto:ddh...@sbcglobal.net > wrote: > > > > > > > > > > > > > > > > > > > > > > > > > > > > > I joined the list in 1998, for years this > > site was really busy...nowdays so many on the list have passed away, plus I > > guess many use other sites and things like facebook and etc. In my early > > years as a Quad this site and folks on it really helped me a lot, I'm glad > > Jim had a quad-listi'm not sure if there are other sites for quads or > > nothope you all are doing well. ! Dan H.*** > > > > > > On Monday, April 17, 2023 at 04:14:50 PM CDT, SHIRLEY BELL > > > mailto:sbell...@cox.net > wrote: > > > > > > > > > I read this and thought not enough advice. where can we get > > > more conversations going? > > > > > > > > > > > > > On April 17, 2023 at 4:47 PM Edward Tessier > > > mailto:e...@artecopartners.com > wrote: > > > > > > > > Thanks Don, all of us need support now and then. We > > > > appreciate your offer. > > > > > > > > A lot of you probably already saw this article in new > > > > mobility. I think it's worth posting the link here because it focuses > > > > exclusively on long-term SCI. the article sounded, at least to me, as > > > > a bunch of wise quads and para sharing the benefits of their experience > > > > with people more recent to their disability. I would've liked to hear > > > > more advice specifically geared towards managing long-term disability, > > > > along the lines of many conversations on quad list. still, it was > > > > reaffirming for the magazine to simply gather people with long-term > > > > SCI-- a population that often goes overlooked or worse, is assumed not > > > > to exist at all. > > > > > > > > > > > > https://newmobility.com/best-advice-for-people-with-sci-from-people-with-sci/?mc_cid=dc8e2691df&mc_eid=e1907d9c04 > > > > > > > > https://newmobility.com/best-advice-for-people-with-sci-from-people-with-sci/?mc_cid=dc8e2691df&mc_eid=e1907d9c04 > > > > > > > > > > > > Best Advice For People with SCI From People with SCI > > > > https://newmobility.com/best-advice-for-people-with-sci-from-people-with-sci/?mc_cid=dc8e2691df&mc_eid=e1907d9c04 > > > > > > > > > > > > When I was a newly minted T10 para, I recall a > > > > conversation with a friend who was three years post-injury, a T6 para, > > > > who had also become a mentor. He flew hang gliders, sailed, water > > > > skied…http://newmobility.com > > > > > > > > > > > > > > > > > > > > - > > > > From: Don Price > > > mailto:donpric...@yahoo.com > > > > > Sent: Tuesday, March 28, 2023 3:57 PM > > > > To: quad-list@eskimo.com mailto:quad-list@eskimo.com > > > > mailto:quad-list@eskimo.com > > > > > Subject: [QUAD-L] Support groups > > > > > > > > Hello all, > > > > > > > > It's been very quiet in this group. I hope everyone is > > > > doing well. I think that now that the pandemic has passed things are > > > > getting back to normal, mostly. > > > > > > > > The one silver-lining i found was that it forced us to > > > > embrace technology to maintain our social connections. I had never even > > > > heard of Zoom, and suddenly i was scheduling meetings and support > > > > groups using this new tool. > > > > > > > > To that point, if anyone on here is ever feeling > > > > isolated please know there are online support groups you can join to > > > > get that interaction that is so important. I host a Men's Disability > > > > group via zoom every Thursday at 4pm AZ time. I'm sure there are other > > > > groups out there as well. > > > > > > > > If anyone is interested feel free to email me directly: > > > > d...@ability360.org mailto:d...@ability360.org > > > > > > > > Best wishes to you all, > > > > > > > > Don. > > > > > > > > > > > > > > > > > > > > > >
Re: [QUAD-L] Support groups
I read this and thought not enough advice. where can we get more conversations going? > On April 17, 2023 at 4:47 PM Edward Tessier wrote: > > Thanks Don, all of us need support now and then. We appreciate your offer. > > A lot of you probably already saw this article in new mobility. I think > it's worth posting the link here because it focuses exclusively on long-term > SCI. the article sounded, at least to me, as a bunch of wise quads and para > sharing the benefits of their experience with people more recent to their > disability. I would've liked to hear more advice specifically geared > towards managing long-term disability, along the lines of many conversations > on quad list. still, it was reaffirming for the magazine to simply gather > people with long-term SCI-- a population that often goes overlooked or worse, > is assumed not to exist at all. > > > https://newmobility.com/best-advice-for-people-with-sci-from-people-with-sci/?mc_cid=dc8e2691df&mc_eid=e1907d9c04 > > https://newmobility.com/best-advice-for-people-with-sci-from-people-with-sci/?mc_cid=dc8e2691df&mc_eid=e1907d9c04 > > > Best Advice For People with SCI From People with SCI > https://newmobility.com/best-advice-for-people-with-sci-from-people-with-sci/?mc_cid=dc8e2691df&mc_eid=e1907d9c04 > > > When I was a newly minted T10 para, I recall a conversation with a friend > who was three years post-injury, a T6 para, who had also become a mentor. He > flew hang gliders, sailed, water skied… > > > newmobility.com > > > > > - > From: Don Price > Sent: Tuesday, March 28, 2023 3:57 PM > To: quad-list@eskimo.com > Subject: [QUAD-L] Support groups > > Hello all, > > It's been very quiet in this group. I hope everyone is doing well. I > think that now that the pandemic has passed things are getting back to > normal, mostly. > > The one silver-lining i found was that it forced us to embrace technology > to maintain our social connections. I had never even heard of Zoom, and > suddenly i was scheduling meetings and support groups using this new tool. > > To that point, if anyone on here is ever feeling isolated please know > there are online support groups you can join to get that interaction that is > so important. I host a Men's Disability group via zoom every Thursday at 4pm > AZ time. I'm sure there are other groups out there as well. > > If anyone is interested feel free to email me directly: > d...@ability360.org > > Best wishes to you all, > > Don. >
Re: [QUAD-L] Greg Wickenburg
So sorry to hear this news. I know how he was struggling and may he rest in peace now. Nice person. I often think of Joan and wonder what happened to her. She was great as well. And Larry? > On February 6, 2023 at 2:58 PM Danny Hearn wrote: > > Amen, Jim.Sorry to hear about Greg, I joined the list way back in > around 1998 or so, and so many of our good ole friends on here have passed > over the years. I know he had been having a lot of health issues the last > year or two. > > On Monday, February 6, 2023 at 01:47:12 PM CST, Jim Lubin > wrote: > > > this posted on facebook > > To all the friends, family and supporters of Greg Wickenburg, > > Our hearts are heavy to have to tell you that Greg passed away last > night, February 5th 2023. He was surrounded by family and died peacefully at > home. > > Greg was an amazing, inspiring, creative, generous, determined, funny > "smartass", and as genuine as they come. > > Even facing his difficult challenges in life, he never failed to stay > positive. He will forever be in our hearts and now he is free to fly. > > We love you Greg. You will be missed by all. >
Re: [QUAD-L] An Introduction to ABLE Accounts
I agree Dana, I did not know you had so many bladder issues. feel for you my friend. Shirley > On January 22, 2023 at 6:51 AM Dana wrote: > > Hi Todd, > We are dinosaurs. I like this way of communicating, Instead of on a > Facebook website. I don't feel like it is all private I feel like at least > with our group we are all able to share and not feel so exposed.I was > interested in getting information from Ed about his lifestyle as I found it > very interesting, but that email and several others that were speaking along > that line were lost. My Google is full. Dana > Dana > C 4-5. Complete, Tracheostomy,,ileo-conduit, problems with kidney stones > and blocking drainage i’m requiring nephrostomy tubes. I have told by my > kidney doctor that it happens because the conduit is open. I had bladder > cancer in 1986 when I was 12 years post. I had colon cancer in 2014. I didn’t > know that ileo-conduits wear out. Two out three die From the surgery. My > regular doctor wanted to put me on hospice, because we could not find a dr. > we have one of the top kidney doctors at KU Medical Center. > > > > > On Sun, Jan 15, 2023 at 2:49 PM Tod Santee mailto:mr.san...@gmail.com > wrote: > > > > Hi Eric & Jim, > >I use (or more accurately, read) social media much more now, > > too, but certainy don't trust it much for sharing much personal info... > > particularly certain Quad-related info. But I suppose in these more recent > > years of many people oversharing anything & everything, maybe those who > > were once shy to engage via email feel less noticed among the throngs of > > social media users. For the most part, I still try to keep my real name > > and/or full-face photo off FB. As for Twitter, Instagram, and others... > > they're read-only in my book, and only rarely at that! > >Regardless, glad to see some dinosaurs remain! > > > > Best to ya's, > > --Tod > > > > On Sun, Jan 15, 2023, 11:52 AM Eric Olson > mailto:whee...@wi.rr.com > wrote: > > > > > > > My guess is that people have moved to social > > media. People like us that still communicate via a listserv are dinosaurs > > lol > > > > > > On Sat, Jan 14, 2023 at 9:16 PM Tod Santee > > > mailto:mr.san...@gmail.com > wrote: > > > > > > > > > > Hi Jim... I've been a member > > > here a long time and I check in on Quad List messages from time to time, > > > though I rarely have much to offer when I see a question that seems like > > > it's been fully answered once I see it. I'm seeing fewer and fewer posts > > > and/or new members. Do you know if people are "meeting" or communicating > > > on a different forum or some other list? I've been meaning to ask for a > > > while now but I'm just getting more curious since I sometimes see a few > > > days between messages. > > > > > > > > Thanks! > > > > Tod Santee > > > > > > > > On Tue, Jan 10, 2023, 11:58 PM Jim Lubin > > > > mailto:jlu...@makoa.org > wrote: > > > > > > > > > > > > > > > > > >What happens to the ABLE account after the > > > > > death of the account owner?click for more information > > > > > > > > > > > > > > > When the account owner passes away, the funds > > > > > in the ABLE account can be used for any outstanding qualified > > > > > disability expenses, including funeral and burial expenses. The ABLE > > > > > plan can advise you on what is needed such as a death certificate or > > > > > whether there is a special form to complete. It is up to the > > > > > individual state, whether or not to file a claim for Medicaid > > > > > recovery of funds which were paid on behalf of the account owner > > > > > since the account was opened. If someone has never received Medicaid, > > > > > this is not an issue. If the state pursues a claim, In addition to > > > > > allowing for the repayment of outstanding QDEs, including funeral and > > > > > burial expenses, Medicaid buy-in premiums paid since opening the ABLE > > > > > account wi
Re: [QUAD-L] An Introduction to ABLE Accounts
My question that I can't find the answer to, is if you have an able account and die doe the state get your money? Thanks Jim > On January 10, 2023 at 10:34 AM Jim Lubin wrote: > > Age Limit — Eligibility is currently limited to people who developed > their disability before age 26; anyone who becomes disabled later in life > does not qualify. Fortunately, in late 2022, Congress signed off on adjusting > this age limitation beginning in 2026. At that time, individuals who became > disabled before age 46 (rather than age 26) will be eligible to open an ABLE > account. > https://specialneedsanswers.com/an-introduction-to-able-accounts-17586 >
Re: [QUAD-L] sharing game changing products
This is a great idea. I will add mine. Question on the Newmar, can you rent them? Thanks shirley > On October 13, 2022 at 6:10 PM Edward Tessier wrote: > > In a recent post I mentioned some of the products that have been > essential to successfully living my life as a quad (C5 –6, 38 years post > surfing injury). I wanted to expand upon and share my list with everybody. I > think it would be really interesting to hear everybody else's list as well. > > Products that change my life: > > Sure Hands Lift – – I'm still using the lift I bought 20 some years ago > when doing board and pivot transfers became too rough on me and my > attendants. it has never broken down and only needed a replacement battery > once. nothing gets me in and out of bed faster-- no Hoyer type sling. It > also places me in exactly the right spot in my wheelchair. I only wish they > had a travel version. > > Peristeen Bowel management program-- there is more about this my last > post, but basically it is made my bowel program faster, more dependable, > easier on my body, and easier on my attendants. > > Dragon dictation system-- I use this every single day and if I didn't > have it I wouldn't be able to work, right creatively, keep up with friends, > etc. > > Ride wheelchair cushion – – I lost a year to pressure sores when every > other wheelchair cushion failed me. I tried EVERYTHING. The ride cushion ( > which, counterintuitively, is made of hard foam) is fully customized to each > user. It got me back in my wheelchair and back to work, spending time with > my kids, and enjoying life. > > Alexa for smart home control-- turning on lights, controlling my > bedroom fan, calling attendants hands-free, listening to music, ordering > groceries, etc. etc. etc.it's amazing being able to do so many things by > voice that once forced me to constantly ask for help. > > accessible minivan with EZ lock-- after my wheelchair and I fell off of > an old school van lift, the ability to just quickly roll up the ramp and into > a self locking tiedown was revolutionary. I take it too much for granted. > > Fully tilting power wheelchair-- my Permobile 300's tilt function has > extended my functional time in my chair and made pressure relief much less of > a hassle. It's also been my most dependable wheelchair ever. It's going > strong at 10 years and has never needed anything more than batteries and > replacement cushioning on my armrests. > > Lithotripsy kidney stone removal-- like many quads I have chronic > kidney stones and this tech replaced difficult surgery. now, every 2 to 3 > years, I go for a cleaning and I'm up at around in a week. > > iPhone/ iPad and Siri-- the touchscreen, and later the voice > assistant, changed everything about communication, making me much more > productive at work. apps made so many life management tasks incredibly > easier-- banking, shopping, reading books, listening to books, tracking my > kids, scheduling help, paying bills, ordering meds, taking family > pictures... couldn't we all go on and on here? > > Viagra and Ferticare vibrator-- getting erections and ejaculating > aren't required to have a lot of fun in bed, but they sure are nice. > > wheelchair accessible RV by Newmar-- our first accessible RV was a DIY > project that mostly worked, but wasn't all that comfortable. Newmar's line > of wheelchair accessible RVs were designed from the ground up for comfort and > ease of use. they are by far the best product on the market. the family > excursions it enables have given me some of my favorite memories > > > thank goodness for these products and technology. I hope they stay on > the market forever. so, now it's your turn. WHAT IS YOUR LIST OF > CAN'T-LIVE-WITHOUT PRODUCTS? > > Ed Tessier > > > > > > > > >
[QUAD-L] wondering about people
Thanks Nicki, so sad indeed about Lori. We never knew how Bobbie Humphies died either. Miss them both. Also wonder how Joan and Larry are?? I am good here in RI trying to find a way to drive again, hard on many levels. Shirley
Re: [QUAD-L] sweating
Hi Dana, sweating is the worst. I have suffered with it on and off my whole 45 years. no issues that I know of, comes and goes. I use oxybutin(sp?) and long release toltaridine (same thing) at night and day. It helps. I am good lying down in bed, it starts as soon as I slide over to chair. My new trick is using my ceiling lift to get in chair. Not much sweating now for 3 weeks. good luck with it. Humidity makes it worse for me. From: Dana Wray Sent: Tuesday, January 5, 2021 1:33 AM To: Nichole Rohling Cc: Greg ; quad-list@eskimo.com Subject: Re: [QUAD-L] sweating They are no longer making a Medications I have used for decades call propanethine. 15 mg, it worked so great was sweating. Does anyone know of any other medication for sweating. My doctor is out of the office, hopefully they will know of something. I hope somebody knows of something better On Sun, Jan 3, 2021 at 3:49 PM Nichole Rohling wrote: Hemorrhoids, any small skin sores, slits/tears near your bottom? Nichole From: Greg [mailto:g...@eskimo.com] Sent: Saturday, January 2, 2021 5:42 PM To: quad-list@eskimo.com Subject: [QUAD-L] sweating I have been sweating so bad the last few weeks. I have had lots of gas and it can cause sweating pain, but no idea why so much gas. My poo is soft and sticky and have a colostomy, but thats happened before but never this much sweating. Checked for uti, but ok. Its when sitting, laying, etc. Anyone go through this? Greg
Re: [QUAD-L] Butt Soee
Hi all, I have a question to ask all of you who have had, or have a sore If you saw it coming? I mean, was your skin turning a different color where the wound broke out?? I ask because I only had one once and I was young and ignored the skin looking darker where it broke open. Would like to know if they can appear without any signs? Does not seem possible but? Thanks, Shirley
Re: [QUAD-L] 52 anniversary
great attitude Nan! 44 yrs here! From: nlgil...@outlook.com Sent: Sunday, June 7, 2020 6:39 PM To: quad-list@eskimo.com Subject: [QUAD-L] 52 anniversary OK, so I still can’t cut and paste well… Today is the 52 anniversary of my accident. I am so blessed to have had such a full life! Nan, C5/6 complete quadriplegic. Nancy Gillen
Re: [QUAD-L] Re: Just checking in.
I am good in RI. are any of you having trouble getting aids to come?? be well From: Jim Lubin Sent: Monday, April 27, 2020 12:24 PM To: Nancy Cc: Quad-list Subject: [QUAD-L] Re: Just checking in. I'm doing good. Hope you are doing well On Mon, Apr 27, 2020 at 7:13 AM Nancy wrote: Just want to know how you all are doing. Thinking of you all! Nan
[QUAD-L] anesthesia worry
Hi all, I should have my gallbladder out. I am scheduled for July 11. I am worried about AD and going under anesthesia. Any info on the risks or what to tell Dr. I only spoke to the Surgeon. Any news on Greg?? thanks
[QUAD-L] how is Greg?
Does anyone know how Greg is doing??
[QUAD-L] anxiety
Hi Greg, YES I had the same thing happen. I got help from a PT who was trained in Cranial sacral therapy she opened up my chest and I was able to breath better especially in bed when its worse. I still see her once a month she helped with posture as well. Google it. it changed my life as I was just like you with it all. vit b also helps with anxiety. I practice deep breathing as well. ask me more if you want. I know it sucks what you experiencing. shirl
[QUAD-L] Oldest living Quads
Hi Guys, Merry Christmas!! kinda late. My family has me dead and buried before long! Made me mad. I am 59 been a quad 41 yrs. Are there any stats on life expectancy of us? thanks
[QUAD-L] who has gofundme for new van?
Hi, can I talk to whoever it was that has the gofundme for van? I donated to him but can’t remember, greg or glen? Can you send me the link to look at it. thanks
Re: [QUAD-L] 2 pressure wounds
sorry to hear this Bobbie. Hope you feel better, Shirl -Original Message- From: Bobbie Humphreys Sent: Tuesday, June 26, 2018 5:19 PM To: quad-list@eskimo.com Subject: [QUAD-L] 2 pressure wounds I have a stage 4 on my butt and a stage 3 on my hip. I'm going to the wound center and they have me treating the wounds with AG silver on both wounds. I go back July 12th to see a plastic surgeon to see if surgery is an option . I'm 62 and wounds just don't heal as fast. They say I can get up for 1/2 hour per day, which is ridiculous and to turn once every hour! Yeah right. I have a urostomy pouch on my right side so when I get a suppository I HAVE to lay on my left side where one wound is. The last 2 nights I've started getting nauseous and my temperature is 96.0 97.2 I'm always cold. Anybody else ever experience this with a wound? Bobbie "Be the change you want to see in the world". Gandhi
[QUAD-L] bladder spasms
Hi all, the cipro helped, I am good today! thanks for your help.
[QUAD-L] bladder spasms
Hi again, I made a mistake, 7 out of eight catheter changes are good.
[QUAD-L] bladder spasms
Hi all, I have an indwelling catheter 38 years now, and am having fits of bladder spasms on and off after a change of catheter. Sometimes no problems. Probably 7 out of 8 changes go south. I changed this twice and I am still wetting with spasms? Do you have the same problems with super pubic? I just started cipro, had some still good. It’s the weekend and need to wait till Monday to call my Dr. unless it gets really bad. any thoughts? thanks
Re: [QUAD-L] Acupuncture
I tried it when I had horrible sweating and it did help. it saved me but after a while sweating came back and it helped only a little, what helped the most, and I have said this more than once, was, and still is, my deep tissue work by a PT that was trained in it. good luck with it all, so hard, From: Quad Dude Sent: Saturday, January 21, 2017 7:39 PM To: greg Cc: Quad-list@eskimo.com Subject: Re: [QUAD-L] Acupuncture Greg, I tried acupuncture and many other therapies for chronic pain relief (extreme neuropathy everywhere below my shoulders) including countless prescription drugs, trigger point injections, massage therapy, hypnosis, and likely others I can't recall. Keep in mind with acupuncture, the entire premise is based on Qi (Google it) and with a spinal cord injury your Qi is screwed. Can acupuncture still help? Perhaps, as there can be a placebo effect at the very least for any therapy. And I don't rule out the possibility of some true benefit from acupuncture, but I researched it thoroughly, found the best and most reputable acupuncturist I could in Jacksonville, FL (a very large city) and made an appointment. To his credit, he spent nearly an hour explaining acupuncture, and its potential benefits and much more before applying the first needle. In the end, all I got from the experience was a chronic itchy spot at the top center of my forehead right at the hairline that drives me insane at times. I wish I was kidding. Again, to his credit, the acupuncture therapist acknowledged that if I received no benefit from his lengthy session and multiple needle applications, that it may be pointless to try more sessions. My acupuncture treatment was not covered by insurance, but I was willing to try anything. I hope your experience is different than mine if you decide to pursue it. Best of luck! Steve - C4, 28 years On Sat, Jan 21, 2017 at 5:13 PM, greg wrote: Anyone get acupuncture? I'm thinking of trying it to help my shoulder. Its such a weird concept. Stick needles in your body to help with pain. I'd say no-way, but others swear by it. Greg
Re: [QUAD-L] Groin rash
Here it is, it has fungal element also. skin dr said it was fungal on me bad rash raw ugly hurt http://www.indemedical.com/Zeasorb-Antifungal-Excess-Moisture-Powder--25-oz-_p_3198.html From: Danny Hearn Sent: Wednesday, October 19, 2016 4:36 PM To: Lissette Whitehead ; quad-list@eskimo.com Subject: Re: [QUAD-L] Groin rash Have you ever tried Boudreaux's Butt paste ? My doc recommended this years ago and when we see any redness or rash developing we coat the area with that and it seems to work well. Dan H** On Wednesday, October 19, 2016 1:55 PM, Lissette Whitehead wrote: Hello everyone, I hardly ever write here but I read the emails frequently. This time I need help though. I've had a terrible rash in my groin/inner thigh area for about 2 months now. I have tried different ointments, corn starch, Chamomile and nothing works. I'm 10 years post injury and this has never happened to me before. I have no feeling there but when I'm being cleaned my body get pain reactions, strong spasms, chills and my face gets really hot. Anything someone could recommend? Do I need to see a doctor? Thanks in advance and best regards to all. From: g...@eskimo.com To: quad-list@eskimo.com Date: Tue, 18 Oct 2016 16:47:43 -0700 Subject: [QUAD-L] Internet I've been having very bad internet problems, so I had them come out. I've been paying for fast cable internet. I found out the modem / router they put in a long time ago can't handle those speeds. So Its been slower than it should be... Good news is, our area is one of the first with Gigablast. 1gbps. And its less than I pay now. Can't wait. Greg
Re: Fwd: [QUAD-L] Groin rash
I use Zeazorb powder and blow dry that area well after a shower From: Bryce Willis Sent: Wednesday, October 19, 2016 4:56 PM To: quad-list@eskimo.com Subject: Fwd: [QUAD-L] Groin rash Sounds like an outdated cable and maybe a case of wornouts. Try some diflucan. Purty sure its a cure Sent from my iPad Begin forwarded message: Resent-From: From: Lissette Whitehead Date: October 19, 2016 at 2:54:55 PM EDT To: Subject: RE: [QUAD-L] Groin rash Hello everyone, I hardly ever write here but I read the emails frequently. This time I need help though. I've had a terrible rash in my groin/inner thigh area for about 2 months now. I have tried different ointments, corn starch, Chamomile and nothing works. I'm 10 years post injury and this has never happened to me before. I have no feeling there but when I'm being cleaned my body get pain reactions, strong spasms, chills and my face gets really hot. Anything someone could recommend? Do I need to see a doctor? Thanks in advance and best regards to all. -- From: g...@eskimo.com To: quad-list@eskimo.com Date: Tue, 18 Oct 2016 16:47:43 -0700 Subject: [QUAD-L] Internet I've been having very bad internet problems, so I had them come out. I've been paying for fast cable internet. I found out the modem / router they put in a long time ago can't handle those speeds. So Its been slower than it should be... Good news is, our area is one of the first with Gigablast. 1gbps. And its less than I pay now. Can't wait. Greg
Re: [QUAD-L] Hey ladies
I wonder how the Smart chair is? anyone know? Kind regards, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: RONALD L PRACHT To: Quad-list Post Sent: Friday, February 05, 2016 10:55 PM Subject: Re: [QUAD-L] Hey ladies that was very informative and right on , im a man but could relate to most of it ron On Friday, February 5, 2016 9:24 PM, Gmail wrote: I found this and thought it was funny. Bobbie http://kdsmartchair.com/blogs/news/78227398-20-things-women-in-wheelchairs-should-know Smile Everyday
[QUAD-L] toyota van trade in question
Hi, I wanted to ask (Tom) I believe that is who sells Toyota/braun mini vans? I have 2012 sienna with 20thousand miles and thinking of doing a trade in for another newer one with no miles.Wondering if its a good idea and how much will I need to spend. My husband thinks we will have to spend at least 15 thousand? Any thoughts? Kind regards, Shirley Bell www.ShirleyBellDesigns.com
[QUAD-L] Autonomic Disreflexia
Can someone send me the link to the article on Autonomic Disreflexia. Thanks Kind regards, Shirley Bell www.ShirleyBellDesigns.com
[QUAD-L] ADHD article
Hi, can someone send the link to the article on ADHD. thanks Kind regards, Shirley Bell www.ShirleyBellDesigns.com
Re: [QUAD-L] Newspaper Article
Larry, holly cow, our story is exactly the same! I had a lemon for first van, would flood out in damp weather. No body could fix it. years of hell dealing with that problem here in damp RI. got new one in 95! It was great but getting old as well. Kind regards, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: Larry Willis To: quad-list@eskimo.com Sent: Tuesday, December 29, 2015 10:23 PM Subject: Fwd: [QUAD-L] Newspaper Article A great article, Greg! I hope you raise a couple million (and remember your bud in Ky). I can sympathize, though. My first van was a money pit, a lemon, and a constant pain in the anus. It was a NEW '79 E150 and I drove it till 2002 when I bought a '96. Anyway, hope you have great success my friend. God bless. -- Forwarded message -- From: greg Date: Tuesday, December 29, 2015 Subject: [QUAD-L] Newspaper Article To: quad-list@eskimo.com http://www.eastvalleytribune.com/arizona/article_2940e4e4-ae50-11e5-ae0d-1fcdac21f3ee.html Check me out, man he is good looking! Greg
Re: [QUAD-L] bowel program
I do magic bullet every other day. Eat 2 fruits a day and normal diet. - Original Message - From: "Eric Olson" To: Sent: Thursday, December 17, 2015 4:02 PM Subject: [QUAD-L] bowel program When do you do your bowel program? I mean time of day. How often? What things do you use to help move your bowels like senecot, miralax, metamucil? Any simple things like all bran cereals or activia yogurt. I ask because I recently had to have abdominal surgery because of an ileus and have to radically rethink how I manage my bowels. I had heard that quads can develop a mega-colon because of reduced motility in the bowels. A normal person's colon is 6 feet long. Mine is 12. Here's the thing - nobody seems to know if that's abnormal. I guess the number of 30 year quads that have had abdominal surgery is small. Anyway I used to do my bowel program Monday,Wednesday Friday. I was taking metamucil twice a day and on bowel program days I took a magic cleanse and 2 senecot. I ate bran cereals and activia yogurt every day too. What do you do? --- This email has been checked for viruses by Avast antivirus software. https://www.avast.com/antivirus
Re: [QUAD-L] Bowel Problems
Those never worked right for me . I had many accidents. I LOVE the magic bullet, changed my life! go to concepts in confidence web site and get them. The guy who developed the bullet owns it. You can get small sample size to try, I think. Also, when you try it, give it a chance. May take a few tries. Eat a big fruit every day, apple or wedge of melon works for me daily. I love dates and eat 3 or so a day as well. let me know if you try them and how you do. Kind regards, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: nichole rohling To: 'shirley bell' ; quad-list@eskimo.com Sent: Wednesday, December 02, 2015 6:44 PM Subject: RE: [QUAD-L] Bowel Problems No Shirley, I've used generic Dulcolax suppositories for 17 yrs. Thinking maybe I should try them? Nicki From: shirley bell [mailto:sbell...@cox.net] Sent: Wednesday, December 02, 2015 4:34 PM To: nichole rohling Subject: Re: [QUAD-L] Bowel Problems are you using magic bullet? Kind regards, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: nichole rohling To: quad-list@eskimo.com Sent: Wednesday, December 02, 2015 5:01 PM Subject: [QUAD-L] Bowel Problems Back in August my bowels started deciding they wanted to empty (consistency of cow poop for lack of better term) in the evenings about 2 hrs after going to bed. I get chills, etc and generally caregiver gets here and gets me on the shower chair before it's too late. This went on about once a week for a month or so. I had been taking Culturelle since last December so I stopped taking it. My body is still doing the same thing - but only about once every 2 weeks if I'm lucky. No particular food triggers it. Went to the dr yesterday, all labs came back fine. Of course bowel program is jacked up because there's nothing there, sometimes it happens on evenings when I do bowel program that morning and sometimes it is on non-bowel program evenings. No rhyme or reason for it. I'm up for suggestions and anyone else had this happen? Nicki
[QUAD-L] Medicare cuts on seating and other
Hi all, just signed this petition on cuts to wheelchair custom needs. Starting in Jan of 2016. Just when I am going for a new chair, worried I am, sigh. here it is. https://petitions.whitehouse.gov//petition/stop-medicare-making-inappropriate-cuts-complex-wheelchair-accessories www.ShirleyBellDesigns.com
[QUAD-L] colonoscopy
Hi all, I need another colonoscopy done but don't want to do the prep and scope. Is there anyone who did an alternative to this that is easier? thanks, shitrley
Re: [QUAD-L] new chair
Hi all, I am going for a new chair and seating system to sit better. I have been looking at the utube video on the Java ride design cushion and back and it looks great. They seem to know what they are doing. I am in RI however. has anyone used this product and are the other jayback or varalight products as good? I Don't need the custom cushion. any thoughts? my posture is bad and uncomfortable and these rohos don't support. Kind regards, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: diannal...@aol.com To: wheel...@centurylink.net ; quad-list@eskimo.com Sent: Thursday, July 02, 2015 9:02 PM Subject: Re: [QUAD-L] new chair my wheelchair rep came out today and changed the back on my chair. i'm so happy, feels great. it's not a jay3 but a veralite icon air back. it also has little lateral support. the other had way too much. she was familiar with the jay3 website you showed me but my computer was malfunctioning and I couldn't get aol up running to get to your links for you tube but i'm going to send them to her later. thank you sooo much for feedback. she's also coming back out to change my legs/foot rests as they are still too long after changing the back. dianna -Original Message- From: Derrick To: diannal767 Sent: Tue, Jun 30, 2015 1:49 pm Subject: Re: [QUAD-L] new chair i;ve been researching backs and cushions. do u want me to email u my notes, links, reviews of them? it's in word doc. maybe u can get another adjustable back and/or cushion to help fit u to chair better check out the Jay3 back. it has videos about fitting the back to your back issue" scoliosis " follow link, then click on "documents, images,videos" http://www.sunrisemedical.com/products/jay/backs/jayj3back.aspx?tab=Media other backs with videos .. https://www.comfortcompany.com/category/Comfort Rehab/Back Care JAVA Back http://www.ridedesigns.com/configured-cushions.html https://www.youtube.com/user/RideDesigns/videos?view=0 Java back fitting. https://www.youtube.com/watch?v=bA4eN-aLbqQ my buddy just got jay3 back. he really like it. derrick On 6/30/2015 10:24 AM, diannal...@aol.com wrote: my wheelchair rep has been back and says she'll be back with a different back. and back until i'm comfortable with my chair. but it's just so far off her "measurements", i don't think this is right. i guess i'll be finding out. it's only my 2nd chair through medicaid in 25 yrs. but now, 25 yrs later, scoliosis has developed from not sitting correctly and i'm finding these chairs very uncomfortable. just venting because i think i'm going to be stuck with something i don't like. to get the back close to right, the legs are too long, etc. it is however my first recline, i had hoped a smoother transfer of chairs. dianna I beg to differ. Knowledge is Power and you have every right to say NO and not sign the required paperwork until you get exactly what you need. Remember that providers are guided by you requirements and needs. They must comply with insurance perimeters and CMS codes. Learn as much about the manufacturer via the internet. You can try out anything you want. Manufacture Reps are more than willing. Take Charge of YOUR Life. Otherwise others will. -Original Message- From: wheelchair To: wheelsdw ; quad-list Sent: Mon, Jun 29, 2015 10:11 pm Subject: Re: [QUAD-L] new chair I beg to differ. Knowledge is Power and you have every right to say NO and not sign the required paperwork until you get exactly what you need. Remember that providers are guided by you requirements and needs. They must comply with insurance perimeters and CMS codes. Learn as much about the manufacturer via the internet. You can try out anything you want. Manufacture Reps are more than willing. Take Charge of YOUR Life. Otherwise others will. Best Wishe In a message dated 6/29/2015 1:23:16 P.M. Central Daylight Time, wheel...@centurylink.net writes: All companies the same. They do not give a crap about fitting the best chair. They should not get away with this. Until you find a company that really cares and takes the time to evaluate you, You have to really spend the time to research your self. Then ask for a demo to try for a few weeks. Read reviews, ask other users and give it time to adjust for the change. A new different chair takes time to adjust to. I do not think wheelchair manufactures and DME dealers consider people sitting in wheelchairs for 12 hours a day. They should spend the time in customers shoes and ride around town and into stores to see what its like. DME are sparse in rural areas like I live in so there is not many choices
Re: [QUAD-L] Re: lift van
Larry, that is amazing. I had mine custom done, same as yours, in 1996. It was new and Voc. rehab in RI paid for conversion. I am thinking I should try for a new van and see if voc rehab will help me again. I still work so they should? but, I don't want another full size van, I don't think .maybe a smaller van that can handles a lift. Do you know of any? I don't like going up so high and I don't like driving a full size anymore. I have a head support that holds my neck but it is not so great anymore and I feel tippy driving when the road banks etc. It is getting harder to drive for many reasons. Me getting older and the van. I would like to get a mini and get power brakes, steering if I could but would need a power chair to get in and out. I use a power assist chair now, Love it but I would tip back if I thrust up a mini van lift. It's hard, and money, of course is always an issue.. Let me know if you have any thoughts. thanks, Shirley Kind regards, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: Larry Willis To: shirley bell ; quad-list@eskimo.com Sent: Saturday, September 26, 2015 11:33 PM Subject: [QUAD-L] Re: lift van I have tried to take good care of mine. It is red and gray with lightly tinted windows. It has the total package...lowered floor, easy brakes and steering, tie-down, hand controls, tail light switches, etc. I bought it in Sept2002. It had about 120,000 miles on it and was in just excellent condition. Now here is where the Lord steps in. It is the only van I have seen before or since that was equipped EXACTLY the way I need it. Got in on EBay for $13,500...from a young fellow in Colorado. It was a miracle. It would cost fifty thousand today easily. The good Lord and a good young fellow in Colorado have blessed me beyond words. Larry Willis Retired and proud of it On Sep 26, 2015, at 7:33 PM, shirley bell wrote: I too have an 18yr old ford! same lift. It still works great though. Kind regards, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: Larry Willis To: shirley bell Sent: Saturday, September 26, 2015 11:35 AM Subject: Re: lift van Yes, Shirley, I have a full size Ford with single post lift...and it sags. Larry Willis Retired and proud of it On Sep 26, 2015, at 10:59 AM, shirley bell wrote: Hi Larry, do you use a full size van with lift> I do and it sags. Kind regards, Shirley Bell www.ShirleyBellDesigns.com
Re: [QUAD-L] Sitting wrong/Pressure sore
Dianna, what a drag. thanks for sharing this important info. Did you not feel sweaty or anything as the sore was coming on? that's the scariest for us, not to feel it until it's to late. Kind regards, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: diannal...@aol.com To: quad-list@eskimo.com Sent: Friday, September 04, 2015 12:27 PM Subject: [QUAD-L] Sitting wrong/Pressure sore ~Thought I'd share my story with everyone in hopes of preventing this of happening to anyone else!! Finally got in my new chair July 1. By August 14th, I was in the hospital getting surgery on a sore on my butt. I'm home now with a sore the size of a 50 cent piece and 3/4 of an inch deep. Hooked up to a Wound vac and hopefully next week, I'll get this pic line out. ~The wheelchair rep made countless visits to my home to adjust the back, then finally changed it to a air back cushion. Worked on programming the controls that still are 'crazy'. Through the month, Dave said "Your butts hanging out the back". I thought he meant to say, it was big because that's how it felt to me reaching back. What he should have said was, "Your cheeks are hanging over the back of the cushion" ! I was sitting out on my patio & looked in my bay window to actually look and see from the suns reflection, what my butt looked like in this chair. This was a Saturday. I was feeling chilled that weekend, wearing a sweater while it's 80 degrees out. Anyway, I immediately said to Dave, "My butts hanging over the cushion, my butt looks huge"! Dave:, "I told you" Saturday night, he noticed a pencil size sore on my butt, by `Monday morning, it broke open a little with bleeding. I had already had an appointment Monday with my wound doctor for a healing sore on my ankle. She sent me to the E.R with a letter requesting a plastic surgeon, Dr Raj. I also encountered two infections from the wound, one being staff A and another letter to go with it...couldn't care less at this point. Eight days in the hospital, I just wanted to go home. ~That Monday morning, Dave announced he could fix this, (6 weeks too late) Moved the plate under the cushion 3 inches, now the cushion is correct and so is my butt. The wheelchair rep should have checked and caught my seating in corrections!! ~Not finished. I had waited about 2 months for a prior authorization from Medicaid to get the driving equipment installed on my chair. Three inches now has my head about an inch from the door post in my car. Driving it now slightly reclined but it throws everything off, steering wheel, brakes. I had to resubmit another prior to adjust either EZ-Lock or bolt on my chair from the adjustment on chair. Quantum 6000, I do not like it. The ONLY feature I like about this chair is recline. Dianna If you think your butts bigger than you think, in a new chaircheck it out
Re: [QUAD-L] New Chairs
Hi All, I have eazy lock system,. How do you find An electric chair that will work with this? how many are ther to choose from Kind regards, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: Larry Willis To: quad-list@eskimo.com Sent: Saturday, July 25, 2015 1:38 PM Subject: Fwd: [QUAD-L] New Chairs My bud up the street got a quantum about a month ago. Overall, he is well pleased with it. It's a beautiful chair. His only complaint, it doesn't handle rough terrain very well. Nice speed, but short on torque. Could be an adjustment issue. My Arrow is nearly 14 years old and I have not had a single problem with it. (Knock on wood.) Arrow is also the only chair that will accomodate my van tie-down system. Best of luckbig decision! Larry Willis Retired and proud of it Begin forwarded message: Resent-From: quad-list@eskimo.com From: linda...@comcast.net Date: July 25, 2015 at 12:43:01 PM EDT To: Greg Cc: quad-list Subject: Re: [QUAD-L] New Chairs Greg I had a Quickie PS 320 & loved it then I got a Quantum with the Majitek Drive system which was really fast but the Chair tech could never get it programmed right for me. Now I have a Quantum 4000 with their control system & it is fast also in speed three. Linda F.
Re: Fwd: [QUAD-L] Old sci
I have the same feeling and sounds like good health, no pain etc., as Don. I am c 5/6 ish maybe some 7 38 yrs post. I do find it harder mentally and some physical as I age. I have to fight not to get depressed over things I can't do as I see others who are able bodied doing all the fun things.and I worry (A big one as we age) But I have a great husband and home I live in a great community and have friends and good suport. So I can't complain too much. I does break my heart to hear of all the pain issues and sores etc. and I do understand some of it as I have had sores, sweating issues ect. I do have back pain but it is not too bad. I Ice it often when I get in bed and the Myofascial release deep tissue massage has helped me more than anything. Breathing, pain, NO sweating (2 yrs now) and I am finally 90% straighter. I took 2 yrs of therapy but it was many years of getting this way. Anyway, like Don, I hope this helps some young quads. Kind regards, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: Don Price To: Larry Willis ; quad-list@eskimo.com Sent: Saturday, August 08, 2015 11:01 PM Subject: Re: Fwd: [QUAD-L] Old sci I'm writing this for any new quads on the list because I see things differently than most of those who have responded to this post. I will be 33 years post injury on August 15th--C5-6 complete quad due to diving accident. At this time I would love nothing more than to someday be the oldest living quad. I suppose I can say that because I don't have the debilitating pain or issues many on this list speak of. I'm not saying this to undermine their struggles--I know I'm very lucky. I get up every day looking forward to the adventure ahead. I am thankful for every moment I have and I try to radiate that positive vibe to every person I meet. I don't always succeed, and I have bad days just like everybody else. Still, my greatest fear is dying too soon, not dying too old. As others have said here: they were fine living as quads for years and then things just fell apart. I know that is a possibility for me, too. That realization adds even greater urgency to every day--I want to experience everything I possibly can while I'm healthy. So, for any new quads on this list, let me be testimony that life as a quad can be full, happy, active and rewarding, even after 33 years. I only speak for myself, but I know I'm not alone. I wish you all health and happiness, Don P C5-6, 33 yrs post Tempe, AZ
Re: [QUAD-L] SCI
I too received 35 hrs a week for 30 years now but was Just cut to no money because the ILC I was with went under due to poor management by the director. It was quite a blow to me. Now I can only get help if I qualify for Medicaid, which I don't. So as of June I have been on my own. Still trying to get some help by writing to local reps, Gov Etc. we will see.They make it so hard NOT to get on Medicaid. I have tried my whole life to stay off it. Geez, what a system. Kind regards, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: Larry Willis To: quad-list@eskimo.com Sent: Friday, August 07, 2015 12:05 PM Subject: [QUAD-L] SCI My wife manages the local Burger King while I watch the grass grow at home. She works everyday...and gets me in and out of bed. She is pretty amazing. I likely would have given up by now if not for her. Our combined incomes disqualify us from any assistance. Larry Willis Retired and proud of it Begin forwarded message: From: Gmail Date: August 6, 2015 at 6:39:18 PM EDT To: Larry Willis Subject: Re: [QUAD-L] Old sci Larry I just CAN'T believe you can't/don't get home health care! THAT is truly fucked up. My sweet Pete has been taking care of me for over 30 years now getting paid for 40 hours per week! The pay is minimum wage but we've managed. BTW~ the agency did not want to provide medical benefits as a full time worker, so they got away with it by stating he was working Perdiem. Fucking ass holes. He dose EVERYTHING!! Changing the cath, but now the stoma, giving me a suppository and wound care. A nurse never came out, only to do vitals to make the insurance company happy. But we were/are very greatful to receive 40 hours per week for all these years. Bobbie Smile Everyday On Aug 6, 2015, at 4:40 PM, Larry Willis wrote: I feel the same way, Bobbie. Btw, my email accounts have somehow become confused. Some say Bryce (my son) and others say Melissa (my wife), but it's still me, Larry. Larry Willis Retired and proud of it Begin forwarded message: Resent-From: quad-list@eskimo.com From: Gmail Date: August 6, 2015 at 2:56:42 PM EDT To: Bryce Willis Cc: "quad-list@eskimo.com" Subject: Re: [QUAD-L] Old sci Bryce I TOTALY understand what your feeling and talking about. Soo many days I feel as thou I'm not living anymore ... just existing. I hurt so much EVERY SINGLE DAY. What kind of quality of life is THAT? Smile Everyday On Aug 5, 2015, at 9:55 PM, Bryce Willis wrote: Me too, Bobbie. When I wake up in the morning, I hurt so bad all over that I just don't think I can do it. Then I roll over on my back and the muscle spasms begin. They hurt like hell and take my breath away. When I am finally in my chair it takes a good two hours before I can function. Then fatigue hits me and I hang my head for another hour of sleep.if the pain has eased off. This is every dayevery stinking day. Then muddle through the day till bedtime, then do it all over again. Stinks. Sent from my iPad Begin forwarded message: Resent-From: quad-list@eskimo.com From: Gmail Date: August 5, 2015 at 9:38:35 PM EDT To: "John S." Cc: Robert Vogel , Larry Willis , "quad-list@eskimo.com" Subject: Re: [QUAD-L] Old sci Me two John. I do NOT want to get even close. I'm ready to go to sleep tonight and not wake up tomorrow. I'm ready. Bobbie Smile Everyday On Aug 5, 2015, at 5:29 PM, John S. wrote: I sure would hate to go near that record. God bless him. Best Wishes, John s. Original message From: Robert Vogel Date: 08/05/2015 3:51 PM (GMT-05:00) To: Gmail Cc: Larry Willis , quad-list@eskimo.com Subject: Re: [QUAD-L] Old sci Hi Bobbie and Larry, Check out this link to March, 2015 New Mobility—an article and link about Lee Goldstein, 82 years old and 69 years post injury C6/7 para. Talk about beating the odds!!! Fantastic book!!! Here is the link: http://www.newmobility.com/2015/03/so-far-so-good/ Cheers, Bob Vogel On Aug 5, 2015, at 9:13 AM, Gmail wrote: 1973 is when I had my accident. I'll be 60 this November. Bobbie Smile Everyday On Aug 5, 2015, at 6:13 AM, Larry Willis wrote: Hey peeps, New Mobility magazine has a very good article about aging with SCI. It
Re: [QUAD-L] New Chairs
I too want to know. Someone was talking about the quickie 200? that has retired. I want the SMALLEST chair . any thoughts? The replacement looks small quickie 22(I think that's it) Kind regards, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: "greg" To: Sent: Friday, July 24, 2015 7:07 PM Subject: [QUAD-L] New Chairs I need a new chair pretty darn soon. Mine is getting run down. The auto brake barely holds me in place. I usually don't tie down in the van. I just pull in sideways and get tight behind the front seats. But if at all facing forward, when the van stops, I roll forward. While in for something else, the repair shop said the motors are going bad and said I might not be able to get those because they are too old. When I recline, it makes a loud snap/clank noise like metal is braking and the seat jerks. I can't count how many small nuts and bolts I have found on the floor and can't find where they fell off. I've always had front/mid wheel drive, except my 1st chair. 21st Century, large rear bike size wheels. Very fast, but ugly and not real maneuverable. They still make the exact belt drive chair. Fun chair, but hard to get in mini van, no turning around inside. Other than that old fashion one. Looks like the fastest now is 8.5. I have never tried a rear wheel drive, with the smaller rear wheels. Do they turn sharp? These mid wheels can turn around in space. Can I spin around in my van? Permobil M300 - 7.5mph mid Quickie QM-720 - 8mph mid Quickue P-222 - 8.5mph rear I'm looking into these ones. Any thoughts? Greg
Re: [QUAD-L] Help with PCA ad
Hi Joan, in your add, it says position is with an agency? but you hire after? how does it work in your state. In RI, I was on a Medicare part c program for many years until the agency closed due to mismanagement of funds by director, really bad. I AM NO LONGER RECEIVING ANY HELP.Anyway, I was issued checks to pay my pca's that I hired. It is hard now because I can't receive help unless I get on Medicaid and don't qualify because I have more than 10 thousand in savings. It is such a bad system. I have tried to stay off Medicaid and support myself and they push people to get on it to receive any help! My husband will be helping me now but as we are all talking about, things can change in an instant. I try not to worry but its hard. Do others get help from their states? Best, Shirley Bell Subject: RE: [QUAD-L] Help with PCA ad Hi Bobbie This is a sample of what I use. I just change it for specific needs. I use craigslist, Facebook pages that are appropriate (we have one: Word-of-Mouth jobs that is great). Good luck. I HATE looking for new attendants. Joan PART TIME PERSONAL CARE ATTENDANT (NORTH VALLEY) Personal care attendant part time. Quadriplegic woman in North Valleys Pay $10.75 an hour. Complete background checks are required. Saturday and Sunday from 7:00 AM to 11:00 AM. If interested in more time it can also include Monday. Position is with an agency, but we hire after interviews. Duties include personal care, bathing, dressing, fixing breakfast, feeding, and transfers into wheelchair. We have an overhead lift for transfers. No experience necessary, we will train I am looking for someone who wants the part time job for the foreseeable future, and is not just in between jobs and looking for something temporary. It also takes two or three weeks for training and background checks before you start work. If interested reply with a brief description of yourself, it is not necessary to send a resume at this point. Please include your phone number and what time is the best time to call. Thank you so much From: llt1...@sbcglobal.net [mailto:llt1...@sbcglobal.net] Sent: Monday, June 29, 2015 6:29 PM To: quad-list@eskimo.com Subject: [QUAD-L] Help with PCA ad Hey folks, I really need your help! If you're like me, you have a lot of things to say when it comes to helping others, but not so much when it comes to ourselves! Well, I'm in the middle of a rainstorm and am having trouble! I need to find an attendant! Part time help for evenings. What I need help with is putting together an ad and ideas on where to put the ads! Any and all suggestions welcome! Thanks, Lori Sent from my MetroPCS 4G Android device
[QUAD-L] quadtools
Hi all, I think there is another company that makes these grabbers/ I remember one that had a med size one and this company does not? Does anyone know the other comp? thanks Best, Shirley Bell www.ShirleyBellDesigns.com
Re: [QUAD-L] Hey Don
Joan, I NEED my ceiling fan when I get to hot in middle of night, saves me! You can get them with remotes so you can turn off and on when needed,.its so hard for us. I Best, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: Joan Anglin To: quad-list@eskimo.com Sent: Saturday, April 25, 2015 4:51 PM Subject: RE: [QUAD-L] Hey Don I can’t move myself at all, unless I spasm which often sends me into an uncomfortable position. It takes a good 10 to 15 minutes a night to get me positioned so that I think I’ll be comfortable all night long. I sleep on a memory foam mattress with the head and a foot slightly elevated. Because I sleep on my back my hands and arms have always been a problem because they will get wedged against my legs during the night. And then they’d would push up my shoulders and in the morning I would be a very sore. It looks ridiculous, but we found a way to keep my shoulders relaxed. We just take the bottom of my nightshirt and fold it back over my arms and pin it securely with my hand side by side on my stomach. It has also lessened the spasms which I think were caused by my fingers dating into my legs. Amazing what we have to go through to just get a night’s sleep! I have my cell phone plugged in on the table which has my Sicare turn on so I can watch TV. The phone will wake up to a voice command and I can call somebody to come over if I absolutely need to. Thank goodness it doesn’t happen very often. The worst part is knowing I’m going to get too warm a couple of hours after going to bed and adjusting everything so that I am warm enough to go to sleep but not too warm so that I wake up hot and can’t do anything about it!! I really need to design a pulley system to raise and lower my blanket LOL. I can reach the water tube without moving so I don’t get too thirsty, but the alternating too hot and too cold is very frustrating. Anybody have any ideas? I’m open for suggestions. I guess I could blame my temperature changes on living in Reno, today the high is 46°with snow this morning, and Wednesday is suppose to be a 82°record! Maybe I’ve lived here too long? Have a great day everyone. Joan From: Don Smith [mailto:scamper2...@gmail.com] Sent: Saturday, April 25, 2015 11:42 AM To: greg Cc: quad-list@eskimo.com Subject: Re: [QUAD-L] Hey Don I'm able to move myself around some, I sleep on a low loss air mattress and I have a phone by my bed incase of any issues I can't deal with. We change my foley every two weeks which help cut down on problems. As with most of us, I have had to call pca or a friend in the middle of the night though. On Sat, Apr 25, 2015 at 9:02 AM, greg wrote: I could not do it. I go most nights with no trouble, but now and then I start sweating really bad at night. I either need moved around a bit, or my cath is kinked somewhere. I would probably lay there all night worrying that I would start sweating any minute. Greg > Good for you, Don. I would not have the onions to live by myself. I > can imagine my night as one long panic attack. It is almost that > way now. You are more man than I am my friend.
Re: [QUAD-L] Showers
same here, sometimes it takes all I have not to scream at people who complain about the stupidest stuff or feel so sad seeing friends and strangers do things I can't. I seems to have gotten worse for me as all these yrs have passed. I thought things got easier??? Oh well, we all seem to struggle with it so at least we are not alone. I TRY everyday to keep positive and look at what I have and not what I don't, which is allot. But it is a challenge. hang in all of us. Best, Shirley Bell - Original Message - From: Larry Willis To: quad-list@eskimo.com Sent: Wednesday, April 15, 2015 7:04 AM Subject: Fwd: [QUAD-L] Showers Everyday. Every damn stinking crippled ass day. Soon as my eyes open in the morning. Pardon my French. -- Forwarded message -- From: Gmail Date: Tuesday, April 14, 2015 Subject: [QUAD-L] Showers To: quad-list@eskimo.com I was watching a movie and the actor in the scene woke up, pushed the covers off, sat up, put her feet on the floor, stood up and walked in to the shower right after dropping off her PJ's. It took about 1 minute. I turned off the TV and tried to remember how that felt ... but I can't. I couldn't stop crying. I can't tell you how many times I've heard family or friends say "I'm going to jump in the shower." Or "I got home, I was so dirty I had to jump in the shower." I know, I know I should be over feeling like this and it not make me cry after ALL these years. So I'm asking; Does anybody else still get "up set" or "bothered" by what I described above? Smile Everyday
Re: [QUAD-L] Alternating pressure pads
Check this has anyone used it?? http://www.amazon.com/dp/B00QHGMHRA?psc=1 I have that one also, but it's my backup. I used it for a few years but after I got a wound on my butt, from my chair. I sleep on my side, partially, slightly turned. I was in bed a lot so I wanted a thicker mattress. It seemed to word great, but I worried 16 hours at a time, I just wanted it deeper and softer. Greg http://www.amazon.com/gp/product/B002VWK1B8/ref=oh_aui_detailpage_o00_ s00?ie=UTF8&psc=1 this is what I'm presently using, but I am firm believer that low air loss mattresses that alternate are the best to use for open wounds. Just use a simple sheet over the mattress and something so that your wound gets the maximum amount of air. Quadius On Wed, Feb 11, 2015 at 9:12 PM, Gmail wrote: I'm looking for a APP to put on top of my mattress for high risk wound care. Any suggestions? I'm looking for something very good. Last night Tee changed my bandage and said the wordps we all dread; "Oh Bobbie, this is bad, really, really bad. Your butt is bleeding and open in 3 different spots." Thus just came out if the blue. I'm not doing anything different at all. I have an appointment ate the wound center a week from today (Tuesday) Bobbie Smile Everyday
[QUAD-L] transfer master bed problem
Hi everyone, I contacted the transfer master bed co. because to remote for our double bed is not connecting on the up and down. Sometimes it will and can get it to work but its a matter of time. The other functions on it work ok. Anyway, this was his response when I called about getting a new remote. Hi Mrs. Bell, Barb brought me your file and related your conversations to me. As a courtesy to you I reviewed this again and it is an inescapable conclusion that you bed has discontinued parts. Some of the companies that supplied us the electronics are not in business anymore and there is nothing to be done. Your bed is 14 years old. Should you wish to consult with a local electrician they may be able to work around the issues. As a courtesy we can offer you a new bed with greatly discounted price. All the best, Aaron Goldsmith 563 864 7364 This is what I sent back to him in reply. Dear Aaron, I can't believe this. I rely on your bed to go up and down for my disability needs. It is vital to my existence. I will check with and electrician as you suggest but if that does not work. What would reduced price be? Could you just put in new motor etc. to save me money? I am on many forums and chat rooms with others looking for equipment such as a double bed like the one I have from you. I have always recommended your company to them but feel most conflicted over this. Best, Shirley Bell What do you guys think of this. I think it really sucks, paid 5 thousand for this bed!
Re: [QUAD-L] Pneumovax
Hi don, sorry about your friend. Which one of these should a quad get? I had one a few yrs ago, not sure which, thought there was just one? Best, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: "Don Price" To: "Quad-list Post" Sent: Friday, January 02, 2015 7:32 PM Subject: [QUAD-L] Pneumovax Dear friends, This weekend I lost another friend of mine who was a quad. He was way too young to die and was actually in relatively good health the last time I saw him. He was taken down, rather quickly, by pneumonia. So, I'm pleading with all of you to ask your doctor if you are a good candidate to receive the pneumonia vaccine. I plan to get the vaccine as soon as possible after seeing my friend's illness and what he went through. There's good information about the two types of pneumovax (PCV13 and PPSV23) on many Websites, including this one: http://www.vaccines.gov/diseases/pneumonia/ I encourage everyone to do a little research and consider getting this vaccination. It could be a lifesaver. Have a happy and healthy new year! Don.
[QUAD-L] Trusts
Hi all, happy almost new year! There was someone on the list who had recently done a trust ( I forgot the person?) can that person tell me what that entailed? Are there any trusts that have less than the 5 YEAR look back policy. thanks, Shirley
Re: [QUAD-L] adema or swollen feet
any luck with swollen feet Dan?? Wow, stockings and elevation have always been my go-to. If possible, you should try to figure out WHY this has started. My left foot stays swollen like that. -- Forwarded message -- From: Danny Hearn Date: Sunday, November 2, 2014 Subject: [QUAD-L] adema or swollen feet To: "quad-list@eskimo.com" I know some of us deal with swollen legs and feet, but about 2 months ago my feet have swollen real bad-I can only wear soft house slippers now..in the past we just had to elevate my legs some at night and they got better but now they stay very swelled up, my family doc. had me try Lasik A water pill I think plus had me try wearing compression hose stockings, but that did not help a whole lot, does anyone know what can be done or what type doctor can treat this?? We are not sure if is even treatable? Anyway's thanks for any information from any of you that deal with this or know any more that can be done/ ? thank you ! Dan H**
Re: [QUAD-L] Reclining?
Hi Ed, I looked into the ride but you have to go to Co. to get one. has that changed? Also, do you have to keep getting evaluated to check for positioning changes in your body? Best, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: Ed Tessier To: Gmail Cc: lwillis...@yahoo.com ; quad-list@eskimo.com Sent: Monday, November 03, 2014 10:27 PM Subject: Re: [QUAD-L] Reclining? I loved my Rojo cushions for 27 years. They worked great and I had no breakdown problems. My first pressure sore wasn't huge but it took more than a year, mostly in bed, to get healed properly. Understanding that cushion was part of the problem took a long time. I tried several new cushions, including the one that electronically varies the air pressure in each cell. The one and only cushion that got me back up and active again was the one I was certain couldn't help, the Ride. Ride cushions are solid, as in hard, custom molded foam. It's counterintuitive that it should work to relieve pressure, it is so customized for you that it can shift the pressure of sitting to more padded tissue along your legs and upper back. If I haven't found it, I'd still be in bed. On Mon, Nov 3, 2014 at 10:26 AM, Gmail wrote: I hear ya Larry. Bobbie Smile Everyday On Nov 2, 2014, at 6:36 PM, lwillis...@yahoo.com wrote: After 43 years, my skin is as thin and fragile as a soap bubble. I have a shallow but open wound on my butt that has plagued me for close to ten years. Also one on my left hip. Any wound I get on my feet/legs takes forever to heal, if it heals at all. My legs stay bent because of crushed knees. It is a bit of hell on a daily basis. Insert here a long line of $)&;/&$!!! Sent from my iPad Begin forwarded message: Resent-From: quad-list@eskimo.com From: donald scott Date: November 2, 2014 at 2:37:58 PM EST To: Danny Hearn , "quad-list@eskimo.com" Subject: Re: [QUAD-L] Reclining? Reply-To: donald scott I have been in my chair going on 24 years. I have always used a reclining chair, never a tilt. I like that my knees get bending during raises and better blood flow for legs. I try and recline once a hour as well and even more when I'm on my putr just chillin' at home, but just like last night I was at a amusement park and only did 1 raise in 5 hours. So sometimes I'm bad. I have always done 14 hours up and 10 hours in bed. I start on my back in bed and turn on my side about 4 hours into the night. I have heard many horror stories about air cushions so I have stuck with Jay1, Jay2, and now Jay3 mud cushions. I only wear blue jeans. I rarely have any breakdown with this routine. If when I go to bed and there is any redness or openness we put Silver Sulfadazine and a 2x2 gauze patch over it and then more cream at bed time, so twice a day with cream. If it continues to be open or red I start only doing 8 hours up and 16 hours down with same cream and more time on side. This will clear it all up within a week for me. I know everyone has different reaction and situations but this has worked well for me SO FAR. As we age I think the skin breaks down and more issues will arise. I hope this information is helpful. Have some fun today, Donald C6 On Sunday, November 2, 2014 10:21 AM, Danny Hearn wrote: Nan, I don't understand...if they do a pressure mapping, then what happens or what can be changed then?? I use Roho going on 18 years now. thank you Dan H** On Sunday, November 2, 2014 12:06 PM, Nan wrote: Bobbie, Do you use a Roho? I do and I've found that they lose air after a while. This causes me to get sores - I've been sitting for so long my skin is incredibly fragile. What I've learned is that when this happens, I need another pressure mapping. Sometimes I have to fight to get one, but once I get it I can heal sores while in my chair. Sometimes I have to recline for a week or so - watch TV, listen to music ... but once a sore starts to heal, I can start living again. Have you had a pressure mapping recently? Nan On Saturday, November 1, 2014 10:35 PM, Gmail wrote: I try to recline once an hour ... if I remember. I love to paint, and to put my brush down to recline takes the away the flow. And when I'm reading I would need to recline every chapter. I'm only up 7-8 hours and up one day then in 2-3 days for prevention. November 7th I have an appointment to see a wound Doctor because I have a very small area stage 1 or less. I'm using DuoDerm extra thin. But to tell you the truth, I'm sick and tired of needing to deal with all this shit. Bobbie Smile Everyday
Re: [QUAD-L] Reclining?
I recently got a custom roho cushion for my foot pad. It is great and has helped my feet.You must be seen by a vendor to get one which was a slow process. Roho should figure out how to do it themselves. Best, Shirley Bell - Original Message - From: daano...@gmail.com To: Gmail Cc: Nan ; quad-list@eskimo.com Sent: Tuesday, November 04, 2014 1:35 AM Subject: Re: [QUAD-L] Reclining? What kind of Roho do you use in the bed Bobbie? Dana Sent from my iPhone On Nov 2, 2014, at 1:40 PM, Gmail wrote: I do use a roho in my chair and bed. I/we check it regularly. Bobbie Smile Everyday On Nov 2, 2014, at 1:06 PM, Nan wrote: Bobbie, Do you use a Roho? I do and I've found that they lose air after a while. This causes me to get sores - I've been sitting for so long my skin is incredibly fragile. What I've learned is that when this happens, I need another pressure mapping. Sometimes I have to fight to get one, but once I get it I can heal sores while in my chair. Sometimes I have to recline for a week or so - watch TV, listen to music ... but once a sore starts to heal, I can start living again. Have you had a pressure mapping recently? Nan On Saturday, November 1, 2014 10:35 PM, Gmail wrote: I try to recline once an hour ... if I remember. I love to paint, and to put my brush down to recline takes the away the flow. And when I'm reading I would need to recline every chapter. I'm only up 7-8 hours and up one day then in 2-3 days for prevention. November 7th I have an appointment to see a wound Doctor because I have a very small area stage 1 or less. I'm using DuoDerm extra thin. But to tell you the truth, I'm sick and tired of needing to deal with all this shit. Bobbie Smile Everyday > On Nov 1, 2014, at 9:00 PM, greg wrote: > > How often do you recline your chair? > I try to do it at leased every hour. I also am moving around a bit, bending forward a bit to read, etc. > I doubt when I lean forward or sideways a bit, it is enough to move the pressure on my butt. > After my bad pressure sore, I try to recline more often, but when I get into a good book, or am playing cribbage online on my Kindle, I can forget. I often have gone many hours without reclining. > Greg >
[QUAD-L] medicaid question
Can anyone tell me if I could qualify for Medicaid if my husband has investments (money) in his name? thanks, Shirley
Re: [QUAD-L] Bad few Days
Hi Greg, sorry about the panic attack. I use to have big problems when I would lie down with breathing. Felt like I could not get a breath at times and it would lead to panic because of it only making it worse. I can tell you as soon as I started to have muscular therapy done from a holistic PT for my crooked spine thing my breathing improved GREATLY. the first visit or so she massaged gently in my chest and it was unbelievable the way it opened my lungs. I could and still can get deep breaths in with ease now.Sometimes, if I have a bad dream, I wake up and have panic breath but I just calm myself and know that I am better now. It is called myofascial release. It has helped me with crooked body as well and I have not had the sweats since I began, another huge perk. shirl Greg, being in the hospital is like jail for us quads. I'm sorry you have to feel panicked. If I were you I would get on some anti-anxiety meds or antidepressants. Also, I keep both a heating pad and a cooling towel by my bed at night so that I'm covered either way. Do you take Propantheline? Meredith -- From: "greg" To: "quad-list" Sent: Tuesday, August 19, 2014 7:28:56 PM Subject: [QUAD-L] Bad few Days Just spent 2 days in the ER, well 1 in the ER, 1 in a room. Woke up overheated which sometimes causes a claustrophobic / panic feeling. I felt panicked and like I could not get enough of a breath. I also felt like I was going to get sick. I thought maybe a UTI or something. They were worried about my heavy chest, so I had an x-ray, CAT scan, which lead to an angioplasty. Luckily everything came out fine. They think my heavy chest is from my spine curving causing pressure. So they are setting up an appointment with a lung doctor soon. I did have a UTI also. But I get so frustrated with this stupid panic feeling. I worry about everything and can't stop. I worry about that I'm going to worry. Wake up feeling like I just have to get up into my chair. It's a scary panic. It use to happen maybe once every few years, but lately it's more often. I think it's my heavy chest making it worse. I just don't feel like I'm getting enough oxygen. The doc says the lung doc might subscribe an oxygen tank at night. Once the feeling is one, I feel so stupid about worrying about that stuff. Getting overheated seems to be the trigger point most of the time. The problem is I feel so cold at night, even shivering. I would swear I'm cold… But if I uncover a bit and cool off, I actually get better. So I swear I'm cold, but actually I'm too hot. This only started a few years ago. Anyone else have that issue? I'm sure it's a nerve ending issue. But I just shake I feel so cold, problem is sometimes it is because I'm cold. So anything I do to get warmer only makes me shiver more and get more overheated. So I just don't know if I'm hot or cold, it feels exactly the same. No fun getting old, Greg
Re: [QUAD-L] what to pay helper
Thanks you guys! Best, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: RONALD L PRACHT To: Danny Hearn ; quad-list@eskimo.com Sent: Wednesday, July 02, 2014 1:31 PM Subject: Re: [QUAD-L] what to pay helper well he paid til he went broke then he was put in a home. they stuck him in a bed without a wheelchair.he has a bag for number 1 and 2. he doesn't even know if its day or night anymore. sad situation, the man used to drive and have a life. ron On Wednesday, July 2, 2014 12:13 PM, Danny Hearn wrote: Wow, Ron $100 for only 4 hours, let me know if he ever needs help again, bet my wife could fit it in her care-giving schedule. lol Dan** On Wednesday, July 2, 2014 11:29 AM, RONALD L PRACHT wrote: if its only for a week it really doesn't matter, however much it takes to get them to do it and show up. obviously you pay more for a couple visits than you would pay if you hired them permanently. 50 bucks to get them there and spend a couple hours is probally what its going to take. I had a para buddy that paid 100 dollars a day for about 4 hours of work. Ron On Wednesday, July 2, 2014 10:23 AM, shirley bell wrote: Hi everyone, what do you guys pay your aids. I have someone as a temp because my husband is away for a week and it will take 2 hrs to get me done. I first thought 25 an hour but 50 a day will be allot. I was thinking 20 an hour so 40 a day? Let me know what you think. thanks Best, Shirley Bell
[QUAD-L] what to pay helper
Hi everyone, what do you guys pay your aids. I have someone as a temp because my husband is away for a week and it will take 2 hrs to get me done. I first thought 25 an hour but 50 a day will be allot. I was thinking 20 an hour so 40 a day? Let me know what you think. thanks Best, Shirley Bell
Re: [QUAD-L] anniversary
Hang in Dianna, you are an inspiration and help me so much by your positive outlook. we all know its hard to be positive at times but what's the alternative! thanks again Best, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: diannal...@aol.com To: quad-list@eskimo.com Sent: Friday, June 27, 2014 11:17 PM Subject: [QUAD-L] anniversary Most of us usually mention our survival years, mine got past me this year. June 17th was my 24th. I was in a boating accident. Last summer I was diagnosed with Mantle Cell Lymphoma (Blood cancer). Life with sci is difficult. Now I live with an sci and everyday I wonder when I'll relapse. I feel like I'm carrying two very heavy loads now. I've decided to make the most of what I have left. I try to live everyday like it's my last. I enjoy my granddaughter to the moon and back! Monday, I with my family are going to Lake Cumberland in Kentucky. My brother has a patoon boat & we'll be there for 5 days. He's taken me out twice this summer. The ride is so nice. (even on Lake Erie). I *plan* to visit Disney World in Jan. But aside from vacations we need to try and enjoy each day no matter how hard it is. I apologize for no paragraphs. :-) Dianna
Re: [QUAD-L] My neighbor Dawn
How does someone get VNA for that long? That does not sound right? - Original Message - From: "Gmail" To: Sent: Thursday, June 26, 2014 11:06 PM Subject: [QUAD-L] My neighbor Dawn Dawn has been living in my/our section 8 apartments since 1995. The VNA has been taking care of all her needs and she worked her way up to 6 hours per day, 7 days a week. She has ALWAYS treated nurses and aids as her "staff" "They work for me." She would always tell me. She did not treat them well at all. The agency has now cut her hours down to 2 hours per day. She called Pete for "Help" I have now idea where or what is going to come or happen from this. Bobbie venting Smile Everyday
Re: [QUAD-L] i want this van......opinions?
I too am tired of my big lift van. I find it scary. We have a mini van with ramp lift but I can't drive it and can't get up and down the lift by myself. So, if I got a mini van I could drive, I would need to get a power chair. I don;t want to do that but? Do they convert a smaller type of van with a lift ramp? so it would be not so big and awkward. I have a full size ford now but it is 19 yrs old and should be replaced. Any thoughts on good smaller vans for a lift ramp? Thanks Best, Shirley Bell - Original Message - From: RONALD L PRACHT To: quad-list@eskimo.com Sent: Monday, June 16, 2014 11:13 PM Subject: Re: [QUAD-L] i want this van..opinions? I tired of lift vans and my next one is going to be a ramp style. I would rather have a fold up ramp instead of in floor. This thing I wonder about the transition is when I go down the ramp with my quad hands I might run into the car next to me if they are close. Ron On Monday, June 16, 2014 10:08 PM, Quadius wrote: I'm familiar with that van. I haven't tried it yet, but I did talk to an owner down here in Tampa and they were very pleased with it. Yes, someone six-foot tall can fit in it depending on how tall there chair sits. As far as I know, this van has the most had clearance of any mini size van. On Mon, Jun 16, 2014 at 8:35 AM, Fragile wrote: Looks nice. I have a full-size Econoline van, rear suspension is pretty stiff, makes for an uncomfortable ride. I wonder if anybody around 6 feet tall can fit inside a minivan like this? On Sun, Jun 15, 2014 at 11:29 PM, RONALD L PRACHT wrote: http://www.ebay.com/itm/Toyota-Sienna-SE-VMI-Handicap-Wheelchair-Access-Side-Ramp-Mobility-Northstar-SE-Nav-DVD-Like-New-/331230843120?forcerrptr=true&hash=item4d1ee590f0&item=331230843120&pt=US_Cars_Trucks I want this van. Only has 2000 miles and has hand controls.HM Ron
Re: [QUAD-L] Itchy Head
scalpacin(sp?) works great for me. Best, Shirley - Original Message - From: wheelch...@aol.com To: g...@eskimo.com ; quad-list@eskimo.com Sent: Friday, May 30, 2014 3:05 PM Subject: Re: [QUAD-L] Itchy Head Crisco was used during WW-II. Today, Extra Virgin Olive Oil, will do better. Best Wishes In a message dated 5/30/2014 2:02:48 P.M. Central Daylight Time, g...@eskimo.com writes: I've had such an itchy scalp for years. It comes and goes and sometimes itches so bad it hurts. I can't reach the center worst area, so I have others scratch it hard and long. The doc suggested rubbing my scalp with Crisco Oil/Shortening at night and massaging it in good. Then washing it out in the morning. Then scrapping your scalp with a plastic black comb. Lots of dead skin flaked off. I had to do it a couple times, but it's great now. Relief. Greg
[QUAD-L] check out this cushion
Hi all, just talked to friend who had a hard callus type sore on his bottom for a long time. He went to wound clinics and they kept shaving it etc. saying it looked good bit it would not heal months later His friend(he had a wound heal using this cushion) gave him his cushion, "Ish Dish cushion"http://www.spanamerica.com/isch_dish.php, he said it healed within 2 weeks using it. Now he only uses this to sit on. Changed his life story. maybe it can help others. take care. Best, Shirley Bell
Re: [QUAD-L] Jim Lubin on youtube
Nice, to meet Jim! Best, Shirley Bell - Original Message - From: RONALD L PRACHT To: quad-list@eskimo.com Sent: Tuesday, April 22, 2014 2:01 PM Subject: [QUAD-L] Jim Lubin on youtube https://www.youtube.com/watch?v=zvsnCpXpook Not sure if this link works, but it was a cool old video with jim on it. Ron
Re: [QUAD-L] Big Prob...
My BP program became much better when I started taking calcium with magnesium . I am still surprised that my stools are always soft. Have not used any of the other things mentioned since. You can just buy magnesium pills and as far as how much, you will have to experiment. It changed my life. I also use magic bullet. Best, Shirley - Original Message - From: Bill Lang To: jume9...@comcast.net Cc: quad-list Sent: Thursday, April 10, 2014 11:42 AM Subject: Re: [QUAD-L] Big Prob... hi, I hear you. I'd be using OxyContin and Fentyl for the last four years. 30 mg. Very 3 hrs, and patches at 250 mg changing every 48 hours. I too have a problem with my bowel program, seems it's either very soft and sticky or very hard and needing an enima to evacuate. When I do that it really screws everything up. Best advice I can give you is to keep it soft at least it's coming down. When I need to go (badly my BP is every other day), I will use warm prune juice and double doses of MiraLAX. My body goes when it has to, and it seems that it takes 48 to 54 hours for those solutions to finally work. I have been prescribed Amitiza and it does work to keep me regulated most times. There is a $200 co-pay for a 90 day supply. Sadly, our schedules are slaves to our bowel programs. I will look for advice from our other friends on the list to see if there is anything that I have not tried. Just thought that our situations are so mirrored that I would dictate this off to you. Good luck Billy Lang Sent from my iPad On Apr 9, 2014, at 20:14, jume9...@comcast.net wrote: Stool softeners don't help most people. we have all talked and fiber, water, fruits, sugar free see's chocolate, prunes, senekot.and did I say water seem to be somewhat helpful. From: wheelch...@aol.com To: moip...@yahoo.com, quad-list@eskimo.com Sent: Wednesday, April 9, 2014 3:57:26 PM Subject: Re: [QUAD-L] Big Prob... What did the doctor advise? Oatmeal is a good way to begin the day. It contains fiber. Drinking lots of fluids is equally important. Best Wishes In a message dated 4/9/2014 5:20:09 P.M. Central Daylight Time, moip...@yahoo.com writes: Ok, son is on Oxycodone X 5 and 50 mg.Fentanyl and only eats solid foods when we go out to doc 1-2 a time a week other then that its all soft. He has had 2 x rays said he is full and they have me doing daily stool softeners, suppositories, miralax this has been from Feb.24 th when he went in for colonoscope I've got 12-15large marbles what do you all tack. Hate to take him off anything we just got to where we manage the pain after 4 yr.
Re: [QUAD-L] Check out these Wheelblades
I need something that will help get through sand on beach. not a beach chair. any ideas? maybe these wheelblades would help? Best, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: "Gmail" To: Sent: Saturday, January 04, 2014 4:52 PM Subject: [QUAD-L] Check out these Wheelblades http://wheel-life.org/wheelblades-offer-winter-mobility-wheelchair/ I saw these on line and absolutely LOVE them! Bobbie Smile Everyday
Re: [QUAD-L] b care
I go every day using magic bullet, it works great for me. I can get up in my showerchair in 5 minuets time,then over toilet. no stim needed. I was GREATLEY helped by using Vit.D with magnesium. Never thought it would act as a laxative but milk of mag is, so... anyway, it works for me and I use to eat all kinds of stuff, now this does it. I do eat Ezekiel(sp) bread every morinng and that is sprouted wheat so good for fiber and good for weight loss, they say. its so hard with bowel, everyone is different, but I went years with horrible accidents and tried every method until I discovered magic bullet, changed my life for the best. NEVER had an accident after using it. It is magic to me. Best, Shirley Bell - Original Message - From: Joan Anglin To: 'RONALD L PRACHT' ; quad-list@eskimo.com Sent: Friday, November 08, 2013 1:09 PM Subject: RE: [QUAD-L] b care I don’t use a suppository, we just do a digital stimulation. Tried suppositories a couple of times and had so much cramping and ended up taking way too long. Joan From: RONALD L PRACHT [mailto:r.pra...@sbcglobal.net] Sent: Friday, November 08, 2013 1:10 AM To: quad-list@eskimo.com Subject: Re: [QUAD-L] b care most people cant insert the suppository and get on the chair in fifteen minutes. From: Joan Anglin To: 'Patricia Brown-Tulee' ; quad-list@eskimo.com Sent: Thursday, November 7, 2013 2:40 PM Subject: RE: [QUAD-L] b care Hi Patricia Rehab at San Jose, California recommended every three days. This was 23 years ago, and we found three days was really awkward to plan around and after the first year tried three days, and then four days. That worked for a few years, but I would sometimes be stopped up and then we would have to change the routine. Several years ago I had a twisted intestine which caused a lot of problems, when they finally got it untwisted and I then had a colonoscopy and spent quite a bit of time talking to the Dr. about what to do so that we were not working around a bowel program all the time. We enjoy food and eat a pretty balanced diet, however eating is not one of my great pleasures as I am unable to feed myself and to this day do not enjoy “being fed”. With some people more than others of course, but I usually have to struggle to eat enough calories every day. He recommended that I use Benefiber, Align and Metamucil and work with the amounts until I find the combination that would work for me. He also believes that a daily bowel program is the best for most people, and encouraged me to try it. It did take several months to find the combination that works for me. I now do a bowel care every day, and when I hire new attendants (hate, hate, hate that job), I am up front and tell them that I do a daily bowel program. I have had a couple of prospective attendants explain to me that their former clients did not expect them to do that every day and I gave them the option of coming to work on my terms or not coming to work at all. Everyone is so different and I do not want an attendant that tells me how to run my life. J This has worked so well that we usually only spend a maximum of 15 minutes daily on the bowel program, and if I just have a couple of days where I don’t go I can usually trace it back to my not drinking enough, or not eating enough roughage etc. It has freed up so much of my time that I would highly recommend a similar program to others. My Dr. Is a firm believer in a daily program and reminds me as we get older our systems do get worn out and that we need to modify eating behaviors to lessen problems. I just had my 23rd anniversary in October and I will be 75 on my next birthday and I have many things to do and many grandkids to watch grow up and I just don’t want to be dealing with problems that we can take care of ourselves whenever possible. Being a quad is a problem enough. Sorry that this went on so long, but I feel it is a big stumbling block for many. Hope this answers some of your questions. Joan From: Patricia Brown-Tulee [mailto:pl...@yahoo.com] Sent: Wednesday, November 06, 2013 5:59 PM To: quad-list@eskimo.com Subject: [QUAD-L] b care what bowel care works for you? i'm almost 1 week w/out. longest w/out has been 2-3 weeks. i've tried a lot in past 27 yrs, & wondering what works for others. Patricia L. Brown-Tulee pl...@yahoo.com while adding years to your life, add life to your years
Re: [QUAD-L] Rims
I went for years with manual CHAIRS AND RUBBER RIMS ETC.. I now use a power assist quickie ex and will never go back. I have had the same chair and wheels for 6yrs now. I can push so easily and still move around with ease like manual.I think all quads who can push should have one. I have had no any problems at all with it. only new batteries to buy. Best, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: wheelch...@aol.com To: r.pra...@sbcglobal.net ; quad-list@eskimo.com Sent: Thursday, November 07, 2013 6:17 PM Subject: Re: [QUAD-L] Rims Quads grip vary from individual to individual. Hence the grip ring, grip contour and push rods. Did I forget the Wigids, Quad Oars? Best Wishes In a message dated 11/7/2013 10:28:04 A.M. Central Standard Time, r.pra...@sbcglobal.net writes: I have always used the rubber coated plastic. The foam getting pretty nasty after six months. The standard choices of pushrims for quads is rubber coated, foam, projection. They have came out with some other types of rims that are aftermarket companies, but depending on your vendor and insurance.. ron From: "wheelch...@aol.com" To: ntpgrn...@aol.com; quad-list@eskimo.com Sent: Thursday, November 7, 2013 7:04 AM Subject: Re: [QUAD-L] Rims That depends on the brand and model of manual chair... Best Wishes In a message dated 11/7/2013 6:43:18 A.M. Central Standard Time, ntpgrn...@aol.com writes: What specific rims do you find easiest to use as a quad with no grip on a manual chair? Nancy Pritchard Realtor/Sales Associate Pall Spera Company Realtor's LLC 802-355-3449 nancy.pritch...@pallspera.com
Re: [QUAD-L] Suprapubic Catheter
I have had indwelling for 34 yrs now. An 18 French. no problems yet. I irrigate every morning. My uro Dr has never said any of that. Best, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: Naomi Hudson To: quad-list@eskimo.com Sent: Friday, November 01, 2013 10:46 PM Subject: [QUAD-L] Suprapubic Catheter Help I need your advice, I have had an indwelling Foley catheter for the past eight years. My urologist keeps telling me eventually, my urethra will become eroded and it will start to leak. This will cause me to need urinary diversion surgery, which I've told him I'm not going to have unless it's absolutely, positively necessary, because it's so invasive. So now he's telling me my next best option is a suprapubic catheter. Then he tells me that he may have to give me Botox in my bladder to keep my urethra from leaking. So I'm like, why not wait until my urethra starts to leak and then give me the Botox and a suprapubic catheter. I have a return visit in three weeks to let him know what I'm going to do. Any suggestions? Have a Blessed Day, Naomi
Re: [QUAD-L] Spouse as Caregiver?
I so agree with Don, I have had good experience with family helping but honest communication is important on a regular basis. Best, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: donald scott To: quad-list@eskimo.com Sent: Saturday, October 05, 2013 9:44 PM Subject: Re: [QUAD-L] Spouse as Caregiver? Hi group, I'm not comfortable saying much about my relationship status here because it doesn't just stay within the community and not end up on the web. I can say I have much experience in this area. Basically It comes down to no matter who cares for you be it a wife, parent, love one, or stranger do everything possible that you can do yourself. For the things you can't do yourself be patient, understanding, and grateful to those who are helping you. That doesn't mean you have to just let them do as they please with your care. Be clear with them what your full needs are. Be organized and make things go as easy as possible. IF AT ALL POSSIBLE GET OUTSIDE HELP. If you can pay someone else or get state help to do even small stuff, I think it's a great idea. Anything you can do to give your primary caregiver a break is recommended. Especially if it's someone you care about being in your life for a long time. If your in a dating or marriage situation and want it to last you must do as I said previously. As well as continually tell them how special and glad you are that they are willing to share all aspects of your life together. Being disabled means we have to work twice as hard to be romantic, sexually creative, and just plain nicer than normal people if we want love to last. Divert the care they have to do with fun, love, and laughs. Oh, and during your care periods try to keep things lite and fun when ever possible. When your together not doing quad and house stuff try really hard to make those times special. Those times can out way the quad times. My 2 cents, Donald C5-C6 22 years post
Re: [QUAD-L] Sitting up straight
It has helped with my pain and the best of all I have had no sweats since I started. we will see the next couple of months because thats my busy sweating time! I will keep you all posted. Best, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: Gmail To: shirley bell Sent: Friday, September 06, 2013 11:02 PM Subject: Re: [QUAD-L] Sitting up straight Shirley, I'm going to DO THIS!! I have scoliosis and back pain from it. Kessler is only 10 miles from my home THEY MUST do this wouldn't you think? Bobbie Smile Everyday On Sep 6, 2013, at 4:36 PM, "shirley bell" wrote: Hi all, thought it time I reported on my PT sessions for my crooked body. It has been nothing but positive. I have been going since may, had 20 sessions and am MUCH straighter already. I will go until I am even straighter, maybe 20 more will do it then occasional sessions for maintenance. She is doing mayofascial release, mostly. The mussels on my right side of spine are shorter than left and pulling my hip off and making me bulge on one side, collapse on other. looking and feeling like I will tip to my right. Anyway, she is working that mussel and lengthening it to make them even and it is working! I can also breath much better, huge difference in that.She has opened up my chest as well doing this. I go about once a week.. Look it up to see exactly what its about. Its like Rolfing. My insurance covers some. I pay 45.00 each time. Feel free to ask me questions. I will let you all know how I am in a few month. I use a solid back. Best, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: wheelch...@aol.com To: todd.daughe...@gmail.com ; quad-list@eskimo.com Sent: Friday, September 06, 2013 1:53 PM Subject: Re: [QUAD-L] Sitting up straight Hi Todd, I'm not sure if you have been evaluated by seating and positioning specialist. There some clinics that will take a mold of your back and custom design a back rest using the mold. Have you considered or tried that? Best Wishes In a message dated 9/6/2013 11:55:17 A.M. Central Daylight Time, todd.daughe...@gmail.com writes: When will people realize that there is no custom wheelchair back that will fix my posture. I am sick of hearing this from people. Maybe a hard turtle shell brace could but would leave me unable to perform any daily activities independently. Sit up straight, sit up straight... FU i'm a quad. I've tried every contraption there is almost. thank you! Todd D c6inc '89
Re: [QUAD-L] Sitting up straight
Hi all, thought it time I reported on my PT sessions for my crooked body. It has been nothing but positive. I have been going since may, had 20 sessions and am MUCH straighter already. I will go until I am even straighter, maybe 20 more will do it then occasional sessions for maintenance. She is doing mayofascial release, mostly. The mussels on my right side of spine are shorter than left and pulling my hip off and making me bulge on one side, collapse on other. looking and feeling like I will tip to my right. Anyway, she is working that mussel and lengthening it to make them even and it is working! I can also breath much better, huge difference in that.She has opened up my chest as well doing this. I go about once a week.. Look it up to see exactly what its about. Its like Rolfing. My insurance covers some. I pay 45.00 each time. Feel free to ask me questions. I will let you all know how I am in a few month. I use a solid back. Best, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: wheelch...@aol.com To: todd.daughe...@gmail.com ; quad-list@eskimo.com Sent: Friday, September 06, 2013 1:53 PM Subject: Re: [QUAD-L] Sitting up straight Hi Todd, I'm not sure if you have been evaluated by seating and positioning specialist. There some clinics that will take a mold of your back and custom design a back rest using the mold. Have you considered or tried that? Best Wishes In a message dated 9/6/2013 11:55:17 A.M. Central Daylight Time, todd.daughe...@gmail.com writes: When will people realize that there is no custom wheelchair back that will fix my posture. I am sick of hearing this from people. Maybe a hard turtle shell brace could but would leave me unable to perform any daily activities independently. Sit up straight, sit up straight... FU i'm a quad. I've tried every contraption there is almost. thank you! Todd D c6inc '89
Re: [QUAD-L] cancer
so sorry to hear this. I will be praying for you.shirl Best, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: Willis To: quad-list@eskimo.com Sent: Friday, August 09, 2013 5:29 PM Subject: Fw: [QUAD-L] cancer God bless you, Dianna. I know everyone on this list has you in their hearts and prayers. Stay strong. - Forwarded Message - From: "wheelch...@aol.com" To: quad-list@eskimo.com Cc: diannal...@aol.com Sent: Friday, August 9, 2013 8:17 AM Subject: [QUAD-L] cancer Dianna, I am so sorry to read this. I will forward this to the Quad List Best Wishes From: diannal...@aol.com To: wheelch...@aol.com Sent: 8/8/2013 11:06:46 P.M. Central Daylight Time Subj: cancer I was recently diagnosed with Mantle Cell Lymphoma. This is a very aggressive cancer & different from Lymphoma. When I write to the quad-list some of my mail comes back because of aol. Would you tell the list to let them know and prayers are needed. Thank you, Dianna
Re: [QUAD-L] Top 5 things I hate about being a Quad
The list is endless! I agree with everyones complaints. But I try to focus on Best, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: donald scott To: quad-list@eskimo.com Sent: Thursday, July 11, 2013 6:50 PM Subject: Re: [QUAD-L] Top 5 things I hate about being a Quad My top 5 would be. 1. Worrying about current and future cuts in caregiver hours and Medicare/MediCal. 2. Not being able to make enough money to be comfortable. 3. Having to depending on others for life's routine crap. 4. Knowing how to do things like mechanical, electrical, construction, engineering, etc. and not being physically able to do it alone. 5. No more normal SEX...Along with other fun activities like off roading, camping, hiking, hunting, rollercoasters, etc.. From: Gmail To: quad-list@eskimo.com Sent: Thursday, July 11, 2013 10:58 AM Subject: [QUAD-L] Top 5 things I hate about being a Quad These are my top 5 things I hate about being a Quad. 1. Having someone else prepare food for YOU their way. 2. Getting up and in bed when your aid can make it, not when you wish to. 3. People telling me "... how lucky you are not to have to work." 4. Limited selection of clothing. 5. Aging and Quadrum. Bobbie Sent from my iPad
Re: [QUAD-L] 45th Anniversary!
Congrats Nan, I to was 16 Sigh, Sigh Sigh!! I feel that was another life then this one hit. I felt like I was in the twilight zone! Sometimes I still do. But, grateful to be alive and healthy still. I will be 54 June 29th Best, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: Nan To: Patricia Brown-Tulee ; quad-list@eskimo.com Sent: Saturday, June 08, 2013 8:58 PM Subject: Re: [QUAD-L] 45th Anniversary! Hi Patricia, I was just 16 and I turned 61 last month. Quite a turn about... Nan -- From: Patricia Brown-Tulee To: Nan Sent: Saturday, June 8, 2013 1:53 AM Subject: Re: [QUAD-L] 45th Anniversary! nan, how old were u when injured? Patricia L. Brown-Tulee pl...@yahoo.com while adding years to your life, add life to your years -- From: Nan To: "quad-list@eskimo.com" Sent: Friday, June 7, 2013 8:14 PM Subject: [QUAD-L] 45th Anniversary! First, congrats to those of you who have made it longer than I. It's a real accomplishment! I was going to write earlier but got knee deep in filling out entry forms & copying documents for the next horse show. I did celebrate with a big bowl of soft chocolate ice cream! Then a mandatory tilt for a couple of hours, and now on to you all. All I can say is... Hooray! I made it another year! Nan 45 years post C5/6 Complete Trampoline/Pool slide accident 6/7/68
Re: [QUAD-L] The List
Shirley Bell c 5/6 May 19,1976 16 yrs old. car accident, I was passenger. Best, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: ~LittleQuad~ To: quad-list@eskimo.com Cc: Quad-list post Sent: Friday, April 26, 2013 7:07 PM Subject: [QUAD-L] The List Amy Thomas aka LittleQuad 33yrs old C 4,5,7 incomplete Injured 11/09/1998 Car wreck (I was passenger) Sent from Yahoo! Mail on Android -- From: Johnny Camm ; To: jume9...@comcast.net ; Cc: quad-list@eskimo.com ; Subject: Re: [QUAD-L] The List Sent: Fri, Apr 26, 2013 10:11:02 PM Johnny cammon c4/5 gun shot wound 1991 Chicago Illinois when I was 16teen From: "jume9...@comcast.net" To: "list, quad" Sent: Friday, April 26, 2013 2:50 PM Subject: [QUAD-L] The List Meredith C5/6, diving accident 1981 Northern Cailfornia From: bobbie...@aol.com To: sbell...@cox.net, daa...@aol.com Cc: "list, quad" Sent: Friday, April 26, 2013 12:40:18 PM Subject: Re: [QUAD-L] going to PT for crooked body Would all of you (if you want to) tell me, and other's on the list who are new, your name, level of injury, how injury happened, year of injury and what state you live in. Like below. Bobbie Humphreys - C-4,5,6,7 Motorcycle, 1973 New Jersey Smile Everyday -Original Message- From: shirley bell To: Dana Wray Cc: quad-list Sent: Thu, Apr 25, 2013 11:45 am Subject: Re: [QUAD-L] going to PT for crooked body Hi all, I am c/5/6 37 yrs. Best, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: Dana Wray To: jume9...@comcast.net Cc: quad-list Sent: Wednesday, April 24, 2013 8:47 PM Subject: Re: [QUAD-L] going to PT for crooked body Hi Shirley, I don't remember Your level and how many years post your injury. Think we all feel like we have crooked back. I'll look forward to hearing about what can be done. Thank You, Dana Sent from my iPhone On Apr 24, 2013, at 2:32 PM, jume9...@comcast.net wrote: I didn't know they could do that, please let us know. Meredith From: "Nan" <nlg52...@yahoo.com> To: "shirley bell" <sbell...@cox.net>, quad-list@eskimo.com Sent: Wednesday, April 24, 2013 11:46:58 AM Subject: Re: [QUAD-L] going to PT for crooked body Please keep us posted, Shirley. I'm crooked too! Nan From: shirley bell <sbell...@cox.net> To: quad-list@eskimo.com Sent: Wednesday, April 24, 2013 12:17 PM Subject: [QUAD-L] going to PT for crooked body To all my fellow crooked comrades, I am going to be getting some body work done by and advanced PT person. My first appointment is may 30 for eval. I will let you all know what happens and if it helps. Best, Shirley Bell www.ShirleyBellDesigns.com
Re: [QUAD-L] going to PT for crooked body >> Injury Stats
Wow, Nancy 45 years. I am the same level but injured in 76. May I ask how your health is after 45 years? You give me hope. thanks. Best, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: Nan To: bobbie...@aol.com Cc: quad-list@eskimo.com Sent: Friday, April 26, 2013 11:36 PM Subject: Re: [QUAD-L] going to PT for crooked body >> Injury Stats Nancy Davis Gillen C 5/6 Slide/Swimming pool 6/7/68 western NY -- From: "bobbie...@aol.com" To: sbell...@cox.net; daa...@aol.com Cc: quad-list@eskimo.com Sent: Friday, April 26, 2013 3:40 PM Subject: Re: [QUAD-L] going to PT for crooked body Would all of you (if you want to) tell me, and other's on the list who are new, your name, level of injury, how injury happened, year of injury and what state you live in. Like below. Bobbie Humphreys - C-4,5,6,7 Motorcycle, 1973 New Jersey Smile Everyday -Original Message- From: shirley bell To: Dana Wray Cc: quad-list Sent: Thu, Apr 25, 2013 11:45 am Subject: Re: [QUAD-L] going to PT for crooked body Hi all, I am c/5/6 37 yrs. Best, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: Dana Wray To: jume9...@comcast.net Cc: quad-list Sent: Wednesday, April 24, 2013 8:47 PM Subject: Re: [QUAD-L] going to PT for crooked body Hi Shirley, I don't remember Your level and how many years post your injury. Think we all feel like we have crooked back. I'll look forward to hearing about what can be done. Thank You, Dana Sent from my iPhone On Apr 24, 2013, at 2:32 PM, jume9...@comcast.net wrote: I didn'tknow they could do that, please let us know. Meredith From: "Nan" <nlg52...@yahoo.com> To:"shirley bell" <sbell...@cox.net>, quad-list@eskimo.com Sent:Wednesday, April 24, 2013 11:46:58 AM Subject: Re: [QUAD-L]going to PT for crooked body Please keep us posted, Shirley. I'm crookedtoo! Nan From:shirley bell <sbell...@cox.net> To:quad-list@eskimo.com Sent: Wednesday, April 24, 2013 12:17PM Subject: [QUAD-L] goingto PT for crooked body To all my fellow crooked comrades, I am goingto be getting some body work done by and advanced PT person. My first appointment is may 30 for eval. I will let you all know what happens and ifit helps. Best, Shirley Bell www.ShirleyBellDesigns.com
Re: [QUAD-L] going to PT for crooked body
Hi all, I am c/5/6 37 yrs. Best, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: Dana Wray To: jume9...@comcast.net Cc: quad-list Sent: Wednesday, April 24, 2013 8:47 PM Subject: Re: [QUAD-L] going to PT for crooked body Hi Shirley, I don't remember Your level and how many years post your injury. Think we all feel like we have crooked back. I'll look forward to hearing about what can be done. Thank You, Dana Sent from my iPhone On Apr 24, 2013, at 2:32 PM, jume9...@comcast.net wrote: I didn't know they could do that, please let us know. Meredith From: "Nan" To: "shirley bell" , quad-list@eskimo.com Sent: Wednesday, April 24, 2013 11:46:58 AM Subject: Re: [QUAD-L] going to PT for crooked body Please keep us posted, Shirley. I'm crooked too! Nan -------- From: shirley bell To: quad-list@eskimo.com Sent: Wednesday, April 24, 2013 12:17 PM Subject: [QUAD-L] going to PT for crooked body To all my fellow crooked comrades, I am going to be getting some body work done by and advanced PT person. My first appointment is may 30 for eval. I will let you all know what happens and if it helps. Best, Shirley Bell www.ShirleyBellDesigns.com
[QUAD-L] going to PT for crooked body
To all my fellow crooked comrades, I am going to be getting some body work done by and advanced PT person. My first appointment is may 30 for eval. I will let you all know what happens and if it helps. Best, Shirley Bell www.ShirleyBellDesigns.com
Re: [QUAD-L] new
Hi Steven ,welcome to the group! we are a fun bunch! Shirley c5/6 since 1976. Best, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: Steven To: quad-list@eskimo.com Sent: Friday, April 19, 2013 5:27 PM Subject: [QUAD-L] new I have just joined the list. I have a damaged spinal cord at my brain stem C1. My head is braced, but I can move my head a little, other wise I have nothing. I live in Alberta Canada, I am looking forward to participating in the group. Steven
Re: [QUAD-L] Another anniversary
Hi, I feel about the same. Mine is next month. It hits me hard at times, the memories are hard to take but yet I am grateful to. I admire every ones courage and positive outlook in this group, it is not easy to have at times, I know. Best, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: Quadius To: quad-list Sent: Friday, April 05, 2013 7:18 PM Subject: [QUAD-L] Another anniversary I haven't been on here much lately, but I have seen several people commenting about their SCI injury date. Well, today, April 5, is my SCI injury "anniversary." I used to dread this day, but now it really doesn't matter anymore. I choose to celebrate the good things in my life and therefore I usually go out to dinner and celebrate August 6, the first day I was able to breathe on my own without the aid of the ventilator. It's been 18 years now and while I am grayer, a little older looking (actually I look quite a bit older), I still look fondly on that day as if it was yesterday. I'll try to be on here more, but I can't make guarantees. Take care everyone, Quadius
Re: [QUAD-L] Mattress
Hi Boobie, I went through mattress hell a few yrs ago.trying them in the store and got one home called dr bruce but did not like to hard. I found the best mattress for comfort, bends with our bed, and no pressure is the Bliss mattress. they are at sleepies. I love it. I think I got the 9 inch one but will check. They are not all the same and mine is I think their softest. but it is not to soft just comfortable because I can be moved easily on it. The temapedics were weird and I think you would be happy with the bliss as I am. they are expensive but worth it. Best, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: To: Sent: Tuesday, March 05, 2013 4:43 PM Subject: [QUAD-L] Mattress Hi All, I was wondering if anybody has a Tempurpedic mattress? Would you recommend them? What did it cost? Bobbie Smile Everyday
Re: [QUAD-L] Colonoscapy
I had the same experience as dave below. shirley bell I had mine about 5 years ago and it was no problem. With the night beforeprep,Im used to drinking lots of water so i had it planed out what i had to drink at certain times. And i got onmy throne at night. Then got on in the morn to make sure all was out. { dad and bro helped ] You even get a relaxing buzz from the iv drip. i know that wa just my experience.
Re: [QUAD-L] Snow totals in New Jersey
we lost power for 2 days. it was stressful but we madevit. no snow now..its raining and warm. we hade maybe a foot Best, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: To: Sent: Saturday, February 09, 2013 2:04 PM Subject: [QUAD-L] Snow totals in New Jersey Well, we got 15" and WIND. Today is brilliant sunshine, tonight 6 degrees with wind chill well below zero. How about you Shirley, how much did you get in RI? Bobbie
[QUAD-L] mini vans
Hi all, I am going to buy a new min van, yea! But I want the ramp to not be steep like the dodge van I have now. It is a fold out type. I dont trust the sales people.They have an in floor type called Northstar that is suppose to be lower. a summit ramp was another.? do you guys have any thoughts.Also, the kneel systems. Do they work ok? I also want to get a Toyota sienna because the dodge was not the best. thanks Best, Shirley Bell www.ShirleyBellDesigns.com
Re: [QUAD-L] successful
Hi everyone, I am excited about a product I found online called ERGOTRANS HARNESS check it out at AssistedTransfer.com I have been saying something like this would be great at times. I dread getting in a car, so hard. Anyway, I will get one and let you all know. I have been in plane 5 times. It is a thing for sure, you never know and must be on your toes at all times with people helping. off to eat clams my husband dug today! we had a really low tide and the weather here in RI is warm!!! Best, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: Larry Willis To: quad-list@eskimo.com Sent: Sunday, January 13, 2013 5:08 PM Subject: Fwd: [QUAD-L] successful Interesting stories, guys. Out of curiosity, how many on this list, like myself, have not ridden an airplane as a quad? Heck, I've never ridden a passenger plane in my life. The nearest airport to my homestead is over 100 miles away. We are an urbane and sophisticated lot down here in Ky.:) The Turtle Man is from the neighboring county. When I was injured back in 1971, I was taken to the hospital in a hearse! (True) Hope everyone has a happy and healthy night. Sent from my iPad Begin forwarded message: Resent-From: quad-list@eskimo.com From: wheelch...@aol.com Date: January 13, 2013, 3:08:14 PM EST To: aa999...@yahoo.com, quad-list@eskimo.com Subject: Re: [QUAD-L] successful I've taken both the Coach USA bus to Midway and O'Hare Airports (they run every two hours) and I've taken the Chicago-South Shore to downtown and the Orange Line to Midway as well as the Blue Line to OHare. Both Chicago Airports have a "Sticky Patch" they issue to DisAbled Travelers, for special attention. Wearing the "Sticky Patch" with the airline symbol offers its user the best in mobility services. Those wearing the Maroon Vest work for the airports to ensure safety. The "Sticky Patch" also can help going thru security to the departing gates. I hope your return was just as easy. Best Wishes In a message dated 1/13/2013 12:44:41 P.M. Central Standard Time, aa999...@yahoo.com writes: my recent travels from Indiana, southern Arizona just before the holiday season.yes, I have traveled numerous times before this but flying out of Chicago has always been a nightmare!taking a shuttle bus from South Bend to Chicago in just over a two hour ride departing at 4 AM. So once in Chicago I had about an hour and a half before the departing flight and it seemed going through security was not too much of a hassle. Just after a few minutes of waiting at the departing the gate, I was approached by the individual for special needs. Now, in times past, they usually transferred me from my power chair directly to the aisle chair for the aircraft but I had a different idea. This time around. Straight from my power chair to a manual chair and then to the aisle chair. , With following my directions of breaking down my chair and securing a gym bag of my clothing on top of the wheelchair parts to make one beautiful package to fit under the plane. Using two ratchet straps and commercial grade saran wrap to ensure everything would stay together even when they laid chair down on its side. Even with my chair broken down, it barely fits in the cargo hole of the aircraft. Getting the bulkhead seats are the first row of seats in coach section and on the right-hand side of seating in the middle seat with my traveling companion taking the window seat. Departing nearly on time, which was very rare than previous departures. I am 3/4c complete 6 feet tall and just over 200 pounds, so transferring me is not the easiest. Once we touched down the chair was actually still all put together the same way we packed it prior to flight. So getting to the airport with enough time to spare is key in not getting a damage chair during flight and this occurred also on the returning flight. So anybody has any questions about this travel fell free to ask and had an excellent time celebrating my grandpa's 90th birthday. I hope everybody had a great holiday season and is ready for this new year. All is well. Concerning my health really don't have any complaints at this time except for my new chair. And it's been nearly a year now on getting my new chair ordered and delivered. It's from 21st-century product and looks a lot more durable than my current Invacare product! But for now programming it is the next hurdle and hope to have it on the road in the near future. Will let you know once I have it up and running. Take care my friends and have a good one.
Re: [QUAD-L] Brrrrrrrrrrrrrrr
I cant find it on pennies web, who makes it? Best, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: jume9...@comcast.net To: quad-list Sent: Thursday, January 03, 2013 6:01 PM Subject: Re: [QUAD-L] Brrr I received a comforter for Christmas.it is a miracle!! It was purchased at JC Penneys. It is a micro mink comforter with sherpa. Wow it keeps me so warm, I am in luv!! I highly recommend it. I doesn't make me sweat either.luv luv luv. Meredith -- From: "greg" To: quad-list@eskimo.com Sent: Thursday, January 3, 2013 1:02:19 PM Subject: Re: [QUAD-L] Brrr in N ew Jersey G��G��. - 18 I'm in the Phoenix area and I freeze and it's in the 50s-60s during the day. Low 30s at night. But at least it's mostly sunny out. I sit outside in the entry way, walls blocking the wind. It stays nice and warm in there. But I start shivering in the evening, part cause of the cold, part cause I'm sore by then. Greg > Hi All, > Right now at 10:00 it is 5 degrees, tonight it's going to go down > to -18 Definitely a 4 blanket night! Bobbie
Re: [QUAD-L] all quiet on the Western front
Thanks Joan, happy new year to everyone as well! Cold here in RI staying home with my husband eating artichoke dip and shrimp for dinner! Best, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: Joan Anglin To: wheelch...@aol.com ; gah17...@aol.com ; quad-list@eskimo.com Sent: Monday, December 31, 2012 5:21 PM Subject: RE: [QUAD-L] all quiet on the Western front We're staying at home, it was 1° this morning and the high today has been 27° so that's a good reason to stay home, plus 5 inches of snow on our mountainside makes getting in and out of our property somewhat difficult. My van is not a four wheel drive. Curry chicken, lobster and twice baked potatoes for dinner and coffee and bailey's Irish for toasting, can't get much better. Thanks Glenn for the prayers for healthy, and I just replaced my tires and now my batteries, so I will be good to go. Happy new year to all of you, and may each of you find what your heart desires or at least peace within yourself. Joan From: wheelch...@aol.com [mailto:wheelch...@aol.com] Sent: Monday, December 31, 2012 12:47 PM To: gah17...@aol.com; quad-list@eskimo.com Subject: Re: [QUAD-L] all quiet on the Western front Thank You Glenn and May The New Year Provide You With Good Health! Best Wishes In a message dated 12/31/2012 2:42:56 P.M. Central Standard Time, gah17...@aol.com writes: I notice there has not been a lot of postings over the holidays. I hope everyone is just relaxing. Just a few hours away from a new year, my prayer is that each and every persons that post on this site has a safe and enjoyable evening and may 2013 be one of those years of no hospital visits and your wheelchair tires need replaced twice. Happy new year, Glenn Henry
Re: [QUAD-L] Barriers for family visits
Hi Bobbie, I know how it is. I have had similar things with friends& family. It is as if they dont care and I think they really don't. I only have a few friends (not even fam) that would do whatever takes to get me in their house. but not many, just try focus on the positive.its hard I know the heartbreak. Best, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: To: Sent: Thursday, December 27, 2012 7:16 PM Subject: [QUAD-L] Barriers for family visits Hi all. This happens EVERY single year, nd it STILL breaks my heart. My husbands out tonight visiting his family … with whom I've gotten very close to in the past 30 years. I us to be be to get in this hose until they planted scrubs where my ramp use to go … now I can't get in. Pete is glad, in a way, because he never liked carring the big ramp in his nice cloths. So, here I amin bed, alone, while Pete is off at a Christmas party. Yes, I'm feeling sorry for my self. Bobbie
Re: [QUAD-L] Merry Christmas!
Same to you Joan and everyone. Lets hope foe a healthy happy new year! Best, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: Joan Anglin To: 'Dana Wray' ; wheelch...@aol.com Cc: nlg52...@yahoo.com ; quad-list@eskimo.com Sent: Wednesday, December 26, 2012 1:48 PM Subject: RE: [QUAD-L] Merry Christmas! Merry Christmas from the far west. We ended up having a snowy Christmas but everyone was able to get to their destinations without troubles. Of course we ate too much, but isn’t that absolutely necessary on Christmas Day. J} hope everyone had a great holiday, and happy new year to all. Joan From: Dana Wray [mailto:daa...@aol.com] Sent: Tuesday, December 25, 2012 8:05 PM To: wheelch...@aol.com Cc: nlg52...@yahoo.com; quad-list@eskimo.com Subject: Re: [QUAD-L] Merry Christmas! Merry Christmas to all and God bless you! Dana Sent from my iPhone On Dec 25, 2012, at 10:02 PM, wheelch...@aol.com wrote: Thank Yo Nan! And Peace To All Good Men! Best Wishes In a message dated 12/25/2012 9:40:27 P.M. Central Standard Time, nlg52...@yahoo.com writes: Christmas love and blessings to everyone! After all of the recent sadness - Sandy Hook and the Firefighters in Webster, NY, which is one of the suburbs in my area - I wish for hope, happiness and peace to everyone in the New Year. Nan