Re: [QUAD-L] Question about lockdown systems.

[SHIRLEY BELL]

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=Global_Acquisition_YMktg_315_Internal_EmailSignature_sub1=Acquisition_sub2=Global_YMktg_sub3=_sub4=10604_sub5=EmailSignature__Static_
> > 
> 

Re: [QUAD-L] Question about lockdown systems.

[SHIRLEY BELL]

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=Global_Acquisition_YMktg_315_Internal_EmailSignature_sub1=Acquisition_sub2=Global_YMktg_sub3=_sub4=10604_sub5=EmailSignature__Static_
> 

Re: [QUAD-L] BONE DENISITY

[SHIRLEY BELL]

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

[SHIRLEY BELL]

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. That is what is causing spasms on and off an

Re: [QUAD-L] bladder update

[SHIRLEY BELL]

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

[SHIRLEY BELL]

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

[SHIRLEY BELL]

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

[SHIRLEY BELL]

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

[SHIRLEY BELL]

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

[SHIRLEY BELL]

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

[SHIRLEY BELL]

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

[SHIRLEY BELL]

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

[SHIRLEY BELL]

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_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

[SHIRLEY BELL]

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_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_eid=e1907d9c04
> > > >  
> > > > https://newmobility.com/best-advice-for-people-with-sci-from-people-with-sci/?mc_cid=dc8e2691df_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_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  >

Re: [QUAD-L] Support groups

[SHIRLEY BELL]

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_eid=e1907d9c04
> > > >  
> > > > https://newmobility.com/best-advice-for-people-with-sci-from-people-with-sci/?mc_cid=dc8e2691df_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_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

[SHIRLEY BELL]

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_eid=e1907d9c04
>  
> https://newmobility.com/best-advice-for-people-with-sci-from-people-with-sci/?mc_cid=dc8e2691df_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_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

[SHIRLEY BELL]

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

[SHIRLEY BELL]

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 will be reimbursed. Thereafter, the remainder o

Re: [QUAD-L] An Introduction to ABLE Accounts

[SHIRLEY BELL]

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

[SHIRLEY BELL]

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

[Shirley Bell]

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

[Shirley Bell]

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

[Shirley Bell]

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

[Shirley Bell]

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.

[Shirley Bell]

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

[Shirley Bell]

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?

[Shirley Bell]

Does anyone know how Greg is doing??

[QUAD-L] anxiety

[Shirley Bell]

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

[Shirley Bell]

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?

[Shirley Bell]

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

[Shirley Bell]

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

[Shirley Bell]

Hi all, the cipro helped, I am good today! thanks for your help. 

[QUAD-L] bladder spasms

[Shirley Bell]

Hi again, I made a mistake, 7 out of eight catheter changes are good.

[QUAD-L] bladder spasms

[Shirley Bell]

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

[Shirley Bell]

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

[Shirley Bell]

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

[Shirley Bell]

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

[shirley bell]

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 <bobbiehumphre...@gmail.com> 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

[shirley bell]

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

[shirley bell]

Can someone send me the link to the article on Autonomic Disreflexia. Thanks

Kind regards,
Shirley Bell

www.ShirleyBellDesigns.com

[QUAD-L] ADHD article

[shirley bell]

Hi, can someone send the link to the article on ADHD. thanks
Kind regards,
Shirley Bell

www.ShirleyBellDesigns.com

Re: [QUAD-L] Newspaper Article

[shirley bell]

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 <g...@eskimo.com>
  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

[shirley bell]

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

[shirley bell]

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] colonoscopy

[shirley bell]

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 

[QUAD-L] Medicare cuts on seating and other

[shirley bell]

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

Re: [QUAD-L] new chair

[shirley bell]

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 <wheel...@centurylink.net>
  To: diannal767 <diannal...@aol.com>
  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 <wheelch...@aol.com> 
To: wheelsdw <wheel...@centurylink.net>; quad-list <quad-list@eskimo.com> 
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 ru

Re: [QUAD-L] Re: lift van

[shirley bell]

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 <sbell...@cox.net> 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 <sbell...@cox.net> 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

[shirley bell]

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

[shirley bell]

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 g...@eskimo.com
Cc: quad-list quad-list@eskimo.com
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

[shirley bell]

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

[shirley bell]

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 bobbiehumphre...@gmail.com
Date: August 6, 2015 at 6:39:18 PM EDT
To: Larry Willis lwillis82...@gmail.com
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 lwillis82...@gmail.com 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 bobbiehumphre...@gmail.com
Date: August 6, 2015 at 2:56:42 PM EDT
To: Bryce Willis lwillis82...@msn.com
Cc: quad-list@eskimo.com 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 lwillis82...@msn.com 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 bobbiehumphre...@gmail.com
Date: August 5, 2015 at 9:38:35 PM EDT
To: John S. alcibiat...@yahoo.com
Cc: Robert Vogel rhvsh...@me.com, Larry Willis 
lwillis82...@gmail.com, quad-list@eskimo.com 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. alcibiat...@yahoo.com wrote:


  I sure would hate to go near that record. God bless him. 
  Best Wishes, 
  John s.


   Original message 
  From: Robert Vogel rhvsh...@me.com 
  Date: 08/05/2015 3:51 PM (GMT-05:00) 
  To: Gmail bobbiehumphre...@gmail.com 
  Cc: Larry Willis lwillis82...@gmail.com, 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 bobbiehumphre...@gmail.com 
wrote

Re: [QUAD-L] New Chairs

[shirley bell]

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 g...@eskimo.com

To: quad-list@eskimo.com
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

[shirley bell]

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

[shirley bell]

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

[shirley bell]

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 g...@eskimo.com 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

[shirley bell]

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 bobbiehumphre...@gmail.com
  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

[shirley bell]

  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=UTF8psc=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 bobbiehumphre...@gmail.com
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

[shirley bell]

 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

[shirley bell]

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 donpric...@yahoo.com

To: Quad-list Post quad-list@eskimo.com
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

[shirley bell]

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

[shirley bell]

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 ddh...@sbcglobal.net
  Date: Sunday, November 2, 2014
  Subject: [QUAD-L] adema or swollen feet
  To: quad-list@eskimo.com 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?

[shirley bell]

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 bobbiehumphre...@gmail.com 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 nlg52...@yahoo.com 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 
bobbiehumphre...@gmail.com 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 g...@eskimo.com 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
   

Re: [QUAD-L] Reclining?

[shirley bell]

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 bobbiehumphre...@gmail.com 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 rollingl...@yahoo.com
Date: November 2, 2014 at 2:37:58 PM EST
To: Danny Hearn ddh...@sbcglobal.net, quad-list@eskimo.com 
quad-list@eskimo.com
Subject: Re: [QUAD-L] Reclining?
Reply-To: donald scott rollingl...@yahoo.com


   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 
ddh...@sbcglobal.net 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 nlg52...@yahoo.com 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 
bobbiehumphre...@gmail.com 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

[QUAD-L] medicaid question

[shirley bell]

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

[shirley bell]

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 g...@eskimo.com
  To: quad-list quad-list@eskimo.com
  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

[QUAD-L] what to pay helper

[shirley bell]

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] what to pay helper

[shirley bell]

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 ddh...@sbcglobal.net 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 r.pra...@sbcglobal.net 
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 sbell...@cox.net 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

Re: [QUAD-L] anniversary

[shirley bell]

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

[shirley bell]

How does someone get VNA for that long? That does not sound right?  -  
Original Message - 
From: Gmail bobbiehumphre...@gmail.com

To: quad-list@eskimo.com
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?

[shirley bell]

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 quad...@gmail.com 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 swl...@gmail.com 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 r.pra...@sbcglobal.net 
wrote:

  
http://www.ebay.com/itm/Toyota-Sienna-SE-VMI-Handicap-Wheelchair-Access-Side-Ramp-Mobility-Northstar-SE-Nav-DVD-Like-New-/331230843120?forcerrptr=truehash=item4d1ee590f0item=331230843120pt=US_Cars_Trucks




  I want this van. Only has 2000 miles and has hand controls.HM




  Ron

Re: [QUAD-L] Itchy Head

[shirley bell]

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

[shirley bell]

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 
cushionhttp://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

[shirley bell]

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...

[shirley bell]

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

[shirley bell]

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 bobbiehumphre...@gmail.com

To: quad-list@eskimo.com
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

[shirley bell]

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 poaj...@sbcglobal.net
  To: 'Patricia Brown-Tulee' pl...@yahoo.com; 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

[shirley bell]

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 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

[shirley bell]

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?

[shirley bell]

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

[shirley bell]

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 sbell...@cox.net 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.  vent over thank you! 


Todd D
c6inc '89

Re: [QUAD-L] Sitting up straight

[shirley bell]

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.  vent over thank you! 


Todd D
c6inc '89

Re: [QUAD-L] cancer

[shirley bell]

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 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

[shirley bell]

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 bobbiehumphre...@gmail.com
  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!

[shirley bell]

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 pl...@yahoo.com
  To: Nan nlg52...@yahoo.com 
  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 nlg52...@yahoo.com
  To: quad-list@eskimo.com 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] going to PT for crooked body Injury Stats

[shirley bell]

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 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 sbell...@cox.net
  To: Dana Wray daa...@aol.com
  Cc: quad-list quad-list@eskimo.com
  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 lt;nlg52...@yahoo.comgt;
  To:shirley bell lt;sbell...@cox.netgt;, 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 lt;sbell...@cox.netgt;
  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] The List

[shirley bell]

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 cammonjoh...@rocketmail.com; 
  To: jume9...@comcast.net jume9...@comcast.net; 
  Cc: quad-list@eskimo.com 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 jume9...@comcast.net
To: list, quad quad-list@eskimo.com 
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 quad-list@eskimo.com
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 sbell...@cox.net
To: Dana Wray daa...@aol.com
Cc: quad-list quad-list@eskimo.com
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 lt;nlg52...@yahoo.comgt;
To: shirley bell lt;sbell...@cox.netgt;, 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 lt;sbell...@cox.netgt;
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

[shirley bell]

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

[QUAD-L] going to PT for crooked body

[shirley bell]

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

[shirley bell]

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

[shirley bell]

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

[shirley bell]

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: bobbie...@aol.com

To: Quad-list@eskimo.com
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

[shirley bell]

  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

[shirley bell]

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: bobbie...@aol.com

To: quad-list@eskimo.com
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

[shirley bell]

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

[shirley bell]

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

[shirley bell]

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 g...@eskimo.com
  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

[shirley bell]

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

[shirley bell]

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: bobbie...@aol.com

To: quad-list@eskimo.com
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!

[shirley bell]

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