Re: [QUAD-L] Leg Fracture - Above knee

[Tod Santee]

I'm not sure what happened.  I was replying to Philip and when it came up
in my Inbox it looked like I addressed it to you, Ed.  A glltch somewhere,
I guess.  Glad it was helpful in some way.

\--Tod

On Wed, Jan 3, 2024 at 5:25 PM Edward Tessier  wrote:

> sorry for my typo! I'll be a quad 40 years this August
> --
> *From:* Edward Tessier 
> *Sent:* Wednesday, January 3, 2024 4:22 PM
> *To:* Tod Santee ; Philip Wells <
> philipdwe...@gmail.com>
> *Cc:* quad-list 
> *Subject:* Re: [QUAD-L] Leg Fracture - Above knee
>
> hey Philip and Todd,
>
> Thank you so much for posting about osteoporosis. I have not been tested
> for it for over 20 years so seeing what you posted was a great reminder to
> check in with my body and see how it's doing. For a change, my HMO didn't
> even complain about the expense.
>
> By the way, I'm also 56, C5/6,  and will be a quad for four years this
> year (a surfing accident in 1984). I know all of us on here are black swans
> who have survived the odds for a long time. But it was extra cool to hear
> about two of you who have had such a similar journey…
>
> Cheers,
>
> Ed Tessier
> --
> *From:* Tod Santee 
> *Sent:* Wednesday, January 3, 2024 4:15 PM
> *To:* Philip Wells 
> *Cc:* quad-list 
> *Subject:* Re: [QUAD-L] Leg Fracture - Above knee
>
> Hi Philip,
> I'm 56, (C5/6 for 40 yrs) and broke my femur --just above the knee--
> in a car accident 2 yrs ago.  Even with my advanced osteoporosis it healed
> well with no bracing needed.  I also had a burst fracture at L4 that was a
> whole different story.  We thought my leg was causing autonomic dysreflexia
> (AD) but I insisted it wasn't because the AD changed depending on the
> position of my back.  I pressed my docs enough for back x-rays that once a
> broken vertebra was found (1.5 months after the accident) they decided to
> do a full spine CT.  Vertebrae were too fragile for plates & screws so I
> had a cement injected into the cracks to stabilize the vertebra and it
> helped A LOT.  (Did this on a sacral vertebra in '08 after a  bad transfer
> caused a nerve pinch.)  I still had slight AD & sweating after the lumbar
> procedure so I'm still getting epidural cortisone & lidocaine injections at
> a spine clinic every 3 months to control the remaining AD symptoms.
>
> Good luck & best wishes,
> --Tod
>
> On Wed, Dec 27, 2023 at 2:23 AM Philip Wells 
> wrote:
>
> Evening Disabled Community
>
> Hey a few days ago I fall from my chair, slo mo fall onto footpath.
>
> X-ray yesterday showed the break, Doctors not confident its going to heal.
>
> I have it in a brace to keep knee joint at 60 degrees.
>
> Anyone have experience of  a 40+ year vet breaking his leg ?
>
> All doctors here Ive spoken to have 0 SCI knowledge.
>
> Some outcomes sounding a little scary.
>
> Many thanks.
>
>
> Best
>
> Philip Wells
>
>

Re: [QUAD-L] Leg Fracture - Above knee

[Tod Santee]

Hi Philip,
I'm 56, (C5/6 for 40 yrs) and broke my femur --just above the knee-- in
a car accident 2 yrs ago.  Even with my advanced osteoporosis it healed
well with no bracing needed.  I also had a burst fracture at L4 that was a
whole different story.  We thought my leg was causing autonomic dysreflexia
(AD) but I insisted it wasn't because the AD changed depending on the
position of my back.  I pressed my docs enough for back x-rays that once a
broken vertebra was found (1.5 months after the accident) they decided to
do a full spine CT.  Vertebrae were too fragile for plates & screws so I
had a cement injected into the cracks to stabilize the vertebra and it
helped A LOT.  (Did this on a sacral vertebra in '08 after a  bad transfer
caused a nerve pinch.)  I still had slight AD & sweating after the lumbar
procedure so I'm still getting epidural cortisone & lidocaine injections at
a spine clinic every 3 months to control the remaining AD symptoms.

Good luck & best wishes,
--Tod

On Wed, Dec 27, 2023 at 2:23 AM Philip Wells  wrote:

> Evening Disabled Community
>
> Hey a few days ago I fall from my chair, slo mo fall onto footpath.
>
> X-ray yesterday showed the break, Doctors not confident its going to heal.
>
> I have it in a brace to keep knee joint at 60 degrees.
>
> Anyone have experience of  a 40+ year vet breaking his leg ?
>
> All doctors here Ive spoken to have 0 SCI knowledge.
>
> Some outcomes sounding a little scary.
>
> Many thanks.
>
>
> Best
>
> Philip Wells
>
>

Re: [QUAD-L] PROLIA

[Tod Santee]

Hi Paul,
I'm also a C5/6 quad.  I've been getting Prolia for the past 3 yrs and
haven't felt any difference after any injections.  It seems to have, at
least, slowed my bone loss.  My SCI was in 1983 so I'm 40 yrs into this.  I
started with Fosamax pills around 2000, then moved on to another pill I
can't remember, and then started 5 yrs of annual Reclast infusions.  All
those were intended to stop or slow bone loss.  The first I tried
that was supposed to actually rebuild bone was a daily, subcutaneous
injection called Forteo, but it caused very unusual crystals to form in my
bladder and clog my catheter within a week or so (I tried it every 2 days
but it just meant 2 weeks without a clog).  No reason or similar symptoms
were reported but I tried again after 6-8 months with the same result.  So,
they approved one more year of Reclast before starting Prolia 3 yrs ago.
 I hope it works well for you!

Best,
Tod


On Fri, Dec 29, 2023 at 11:47 AM Paul Jacobson  wrote:

> Getting my first PROLIA injection next week to increase bone density.
>
> Is it a good idea? What are the initial side effects?
>
>
>
> Thank you,
>
> Paul c5/6  20 yrs post
>

Re: [QUAD-L] Prolia to treat osteoporosis

[Tod Santee]

Hi All!
 I'm a long-time Quad-List member though I haven't written in a LONG
time for a number of reasons, but this recently caught my attention because
my own Prolia date is coming up again soon in the next couple months.  Two
years ago my endocrinologist was trying to get insurance approval to try a
then-newish medication, *Evenity*, to help rebuild some of the bone loss
that's occurred over the last 40 years.  Unfortunately, it was only
approved for use in post-menopausal women, of which I'm neither.  Are there
any men or women here that have used it (especially men)?  Has it helped
rebuild bone in anyone who has used it?
 About me, I'm a 56 yr old C5-6, complete quad, 40 yrs post-injury
since a fall from a tree when I was goofing around as a teen (that latter
part is likely a basically-familiar story to many here, I'm sure).  I lived
and started college in PA before tiring of the cold & dampness getting me
sick.  I moved to Tucson, finished my biology degree and got a high school
teaching certification.  I taught 11 years full-time and 2 years part-time
at the biggest high school in the city before some other injuries (and
more) caused me to have to leave on long-term disability until getting to
my required number of years for full retirement.  My wife was a physical
therapist at the University of Arizona's Adaptive Fitness program and gym.
We typically travel internationally a couple times a year and we're both
certified scuba divers, so that determines some of our travel.

Best wishes &
Happy Holidays,
--Tod Santee


On Tue, Dec 5, 2023 at 5:14 PM toran spencer 
wrote:

> Hi
>
> Can anybody give me some suggestion on what I can do for my muscles I
> don’t take baclofen or Lyrica because of the side effects. However, I’m
> having so much muscle tension and aching pain. I don’t know what to do. Do
> anybody have any suggestions on any natural supplements or anything?
>
> Get Outlook for iOS <https://aka.ms/o0ukef>
> --
> *From:* Ben Mattlin 
> *Sent:* Sunday, December 3, 2023 1:42:27 PM
> *To:* 'Paul Jacobson' ; 'quad-list' <
> quad-list@eskimo.com>
> *Subject:* RE: [QUAD-L] Prolia to treat osteoporosis
>
>
> Yup. I've been on it for several years now. One shot every six months.
> Other quads had warned me about bad side effects, but I've never
> experienced any. My latest bone-density scans don't show any improvement,
> but my osteoporosis has not gotten worse, either. My doctor says that's a
> win.
>
>
>
> *From:* Paul Jacobson 
> *Sent:* Sunday, December 3, 2023 10:28 AM
> *To:* quad-list 
> *Subject:* [QUAD-L] Prolia to treat osteoporosis
>
>
>
> Hi,
>
>
>
> Has anyone ever tried Prolia or anything similar to treat osteoporosis?
>
> What were your results and concerns.
>
>
>
> Thanks,
>
> Paul  c5/6
>

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

[Tod Santee]

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  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  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  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 of funds are payable to the Estate.
>>> https://www.ablenrc.org/frequently-asked-questions/
>>>
>>>
>>> On Tue, Jan 10, 2023 at 7:48 AM SHIRLEY BELL  wrote:
>>>
>>>> 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] An Introduction to ABLE Accounts

[Tod Santee]

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  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 of funds are payable to the Estate.
> https://www.ablenrc.org/frequently-asked-questions/
>
>
> On Tue, Jan 10, 2023 at 7:48 AM SHIRLEY BELL  wrote:
>
>> 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] About Flu Shots

[Tod Santee]

I get a flu shot every year for 30+ yrs (incl. this year) and never had any
negative effects or the flu.
--Tod


On Tuesday, November 24, 2020, Eric Olson  wrote:

> I get a flu shot every year.  I haven't had the flu since I was a kid.
> knock on wood
>
> On Tue, Nov 24, 2020 at 11:50 AM Randy Anderson <
> randyanderson...@gmail.com> wrote:
>
>> I have gotten the flu shot every year for the past 20 years or so. I
>> don't believe I've ever been sick enough to notice, after taking it.
>>
>> On Tue, Nov 24, 2020 at 10:50 AM Aaron Mann  wrote:
>>
>>> Remember these are our opinions, please research before deciding. Try
>>> here to start: https://www.healthline.com/health/flu-shot-pros-and-cons
>>>
>>> Aaron Mann
>>>
>>>
>>> On Mon, Nov 23, 2020 at 8:11 PM Danny Hearn 
>>> wrote:
>>>
 Thanks for replies all !  Dan***

 On Monday, November 23, 2020, 07:58:12 PM CST, Lissette Whitehead <
 lissw...@hotmail.com> wrote:


 I've never had a flu vaccine in my life. My dad gets it almost every
 year and he always gets sick. I rarely get the flu and if I do, it's very
 mild. However, I do want to get the COVID vaccine, I hope there are no
 negative effects.



 Lissette Whitehead

 416 W. San Ysidro Blvd.
 

 San Ysidro, CA 92173
 

 www.lwgripgloves.com
 --



 --
 *From:* Aaron Mann 
 *Sent:* Monday, November 23, 2020 5:27 PM
 *To:* Danny Hearn 
 *Cc:* quad-list@eskimo.com 
 *Subject:* Re: [QUAD-L] About Flu Shots

 That happened to me three years in a row back in the 90's. Have not
 taken one since. Got the Flu two times since, it was not as bad as after
 those shots.

 Aaron Mann


 On Mon, Nov 23, 2020 at 5:29 PM Danny Hearn 
 wrote:

 Have any of you had the Flu shot this year?  I have got it for the last
 20 years or so.but this year my wife got it first and got real sick
 with headaches and throwing up for several days, now I'm not sure if I
 should get itJust curious to know if most of you have got it yet or
 not?  Dan H.***



 
  Virus-free.
 www.avg.com
 
 <#m_6745865934538158917_m_-326649178684848_m_-1332413248287544101_m_7570964393367902581_DAB4FAD8-2DD7-40BB-A1B8-4E2AA1F9FDF2>

>>>

[QUAD-L] Re: Intro/Hi Again and P.I.E. Bowel Care

[Tod Santee]

Hi Ed,
 In researching this and similar systems, my wife & I have seen several
types that are generally the same as the name brand Peristeen system,
including a "homemade" do-it-yourself kit using urinary catheters, a
bedside bag (for gravity-fed) or 30 ml syringe (for a gentle forced) used
to introduce the warm tap water or a mild soap & water solution.  I can
understand why the brand name kit with its special bag & dial for inflating
the balloon and introducing water would cost more but the general concept
doesn't seem to be much more complicated than a simple enema except for the
fact most of us with SCIs wouldn't necessarily feel the fullness in time to
prevent a bowel rupture.  But I can see that potentially happening just as
easily even with Peristeen if one isn't careful.
 Has anybody tried plain old enemas or something similar to Peristeen
or P.I.E. but without the actual brand-name & high-cost systems?

Best wishes,
--Tod


On Tuesday, November 10, 2020, Ed Tessier  wrote:

> I also have the same problems you did. My switch to peristeen ( I
> participated in one of their early trials for SCI candidates)  has been a
> complete game changer.
>
>  much quicker system-- approximately one hour
>  much less pain and discomfort
>  much less incontinence-- I went from an accident every few weeks to maybe
> once every three or four months
>  almost never any problems with constipation
>
>  the price of the system is  a little steep... but with all of these
> advantages, and being able to travel, and getting so much time back, I
> couldn't imagine doing it any other way. if it ever goes off the market I'm
> in trouble.
>
>  Ed
>
>
>
> On Tue, Nov 10, 2020 at 4:53 PM Tod Santee  wrote:
>
>> Hi Carla,
>>  I'm not sure what kind of doc(s) you're seeing, but in my 37 yrs
>> I've found many doctors will quickly dismiss quad's complaints as just
>> something to get used to unless they are pretty well versed in spinal cord
>> injuries and the unusual complications we face.  Almost any such doc would
>> know that sweating of any significant amount by a quad is very, very rarely
>> "nothing worth looking into."  The differences in times, types and amounts
>> of sweating you describe with no outwardly obvious reasons would make me
>> want to seek info from a neurologist with experience with quads.  My first
>> suggestion would be to try to keep a daily journal to include when the
>> sweating starts and what you were doing and even something as simple as
>> what position you were in just before it started (i.e. were you sitting
>> still, reaching, transferring, doing a bowel routine or exercise, etc.) and
>> is any of it accompanied by pain in the shoulder, neck, or even a side of
>> your ribs or abdomen.
>>  My first guess would be a syrinx...  it's likely been mentioned here
>> before but if you haven't heard of it, it's a stretch or longitudinal
>> (lenghtwise) opening between fibers of the spinal cord that fills with
>> cerebrospinal fluid.  It can cause all manner of weird symptoms from pain
>> to sweating to occasional or continuing weakness.  To the best of my
>> knowledge, the only definitive way to diagnose a syrinx with certainty is
>> with an MRI.
>>  One thing I might suggest is to look into Craig Rehab Hospital's
>> website (they're in Denver)  and see when their next online Q with a
>> nurse is.  Craig specializes in SCI and their free online Q sessions can
>> be super helpful.  When I was 13 yrs post-injury, I had what is called a
>> tethered cord... a situation where the spinal cord attaches to the dura (or
>> duramatter, the very tough surrounding tissue enclosing the brain and
>> spinal cord) and causes a strain or pull on that section as you move
>> around.  My symptoms were similar but maybe not as severe as what you
>> described.  Plus i had a lot of pain in one shoulder.  (But again, it's
>> different for all of us.)  There wasn't much of a public internet to speak
>> of at the time I had it but they pretty much diagnosed me over the phone,
>> asking for an MRI just to verify their suspicions.  The tether caused a
>> syrinx enough that even I could see it on the films without medical
>> knowledge.
>>  I went for a surgery that detached the cord from the dura and they
>> added tissue to make the area around the cord a bit larger.  It was INSTANT
>> relief of pain & sweating when I woke from surgery!!
>>  I hope that helps some.  I could be 100% wrong, too, but it wouldn't
>> be a bad idea to look into it if you haven't already.  I've heard these
>> similar symptoms from several quads.
>>
>> Best wishes &am

[QUAD-L] Re: Intro/Hi Again and P.I.E. Bowel Care

[Tod Santee]

Hi Carla,
 I'm not sure what kind of doc(s) you're seeing, but in my 37 yrs I've
found many doctors will quickly dismiss quad's complaints as just something
to get used to unless they are pretty well versed in spinal cord injuries
and the unusual complications we face.  Almost any such doc would know that
sweating of any significant amount by a quad is very, very rarely "nothing
worth looking into."  The differences in times, types and amounts of
sweating you describe with no outwardly obvious reasons would make me want
to seek info from a neurologist with experience with quads.  My first
suggestion would be to try to keep a daily journal to include when the
sweating starts and what you were doing and even something as simple as
what position you were in just before it started (i.e. were you sitting
still, reaching, transferring, doing a bowel routine or exercise, etc.) and
is any of it accompanied by pain in the shoulder, neck, or even a side of
your ribs or abdomen.
 My first guess would be a syrinx...  it's likely been mentioned here
before but if you haven't heard of it, it's a stretch or longitudinal
(lenghtwise) opening between fibers of the spinal cord that fills with
cerebrospinal fluid.  It can cause all manner of weird symptoms from pain
to sweating to occasional or continuing weakness.  To the best of my
knowledge, the only definitive way to diagnose a syrinx with certainty is
with an MRI.
 One thing I might suggest is to look into Craig Rehab Hospital's
website (they're in Denver)  and see when their next online Q with a
nurse is.  Craig specializes in SCI and their free online Q sessions can
be super helpful.  When I was 13 yrs post-injury, I had what is called a
tethered cord... a situation where the spinal cord attaches to the dura (or
duramatter, the very tough surrounding tissue enclosing the brain and
spinal cord) and causes a strain or pull on that section as you move
around.  My symptoms were similar but maybe not as severe as what you
described.  Plus i had a lot of pain in one shoulder.  (But again, it's
different for all of us.)  There wasn't much of a public internet to speak
of at the time I had it but they pretty much diagnosed me over the phone,
asking for an MRI just to verify their suspicions.  The tether caused a
syrinx enough that even I could see it on the films without medical
knowledge.
 I went for a surgery that detached the cord from the dura and they
added tissue to make the area around the cord a bit larger.  It was INSTANT
relief of pain & sweating when I woke from surgery!!
 I hope that helps some.  I could be 100% wrong, too, but it wouldn't
be a bad idea to look into it if you haven't already.  I've heard these
similar symptoms from several quads.

Best wishes & good luck,
--Tod


On Sunday, November 8, 2020, Carla Aarssen  wrote:

> I am a C5 quad 18yrs now and for the last 10 or so have on and off issues
> with profuse sweating that lasts from minutes to weeks. Sometimes it is
> entire upper body sometimes it is only one side (not always same side)
> Sometimes I am cold well sweating sometimes I am hot. No doctor seems to
> think it is "worth" looking into but I know it is uncomfortable,
> embarrassing and greatly affects my daily living. My bowels move daily but
> not always much? My roho cushion is checked regularly. I have no skin
> issues. I drink plenty of juice and water...Any thoughts, ideas and/or
> suggestions? Thanks in advance. Enjoy your day 
>
> Get Outlook for Android <https://aka.ms/ghei36>
>
> --
> *From:* Tod Santee 
> *Sent:* Saturday, November 7, 2020 3:23:41 PM
> *To:* Robert Vogel ; quad-list 
> *Subject:* [QUAD-L] Re: Intro/Hi Again and P.I.E. Bowel Care
>
> Hi Robert,
>  Thanks for the very detailed info about this Peristeen / Coloplast
> system!  I had never heard of it until you and another person here
> mentioned it.
>  I'm glad to hear how well it works for you and especially happy to
> hear it from a fellow diver!  Given its easy-sounding portability I'll be
> looking at this one a bit closer now, too.  (Hopefully having more than one
> option doesn't complicate things! LOL!!)
>
> Best wishes,
> --Tod
>
>
> On Friday, November 6, 2020, Robert Vogel  wrote:
>
> Hi Todd,
>
> From my ’survey of one’ first look into ’trans anal irrigation’ as in the
> Peristeen system by Coloplast. It is
> similar (and different) than the PIE system. It is small (fits into a
> shaving kit size bag), light and portable.
> It consists of a clear plastic (soft) container that can hold up to 1500cc
> of tap water, tubing, a small hand-squeeze
> pump, a controller, and the key—a disposal rectal foley catheter. You fill
> up the Peristeen bag with luke warm tap
> water—however much works for you—everybody is different, the average
>

[QUAD-L] Re: Intro/Hi Again and P.I.E. Bowel Care

[Tod Santee]

Hi Robert,
 Thanks for the very detailed info about this Peristeen / Coloplast
system!  I had never heard of it until you and another person here
mentioned it.
 I'm glad to hear how well it works for you and especially happy to
hear it from a fellow diver!  Given its easy-sounding portability I'll be
looking at this one a bit closer now, too.  (Hopefully having more than one
option doesn't complicate things! LOL!!)

Best wishes,
--Tod


On Friday, November 6, 2020, Robert Vogel  wrote:

> Hi Todd,
>
> From my ’survey of one’ first look into ’trans anal irrigation’ as in the
> Peristeen system by Coloplast. It is
> similar (and different) than the PIE system. It is small (fits into a
> shaving kit size bag), light and portable.
> It consists of a clear plastic (soft) container that can hold up to 1500cc
> of tap water, tubing, a small hand-squeeze
> pump, a controller, and the key—a disposal rectal foley catheter. You fill
> up the Peristeen bag with luke warm tap
> water—however much works for you—everybody is different, the average
> amount is around 500-600cc of water.
> Next insert the rectal foley into your rectum—next there is a simple
> plastic ‘dial’ controller, you turn the dial to
> inflate, squeeze the rubber-ball like pump once or twice—this inflates the
> foley balloon which holds the catheter
> into your rectum and prevents any water from coming out. Next you turn the
> dial to ‘water’ and start squeezing
> the ball to fill up your large intestine with water, which generally goes
> about 1/2 way into your large intestine, that’s
> about 2 1/2 feet. Then turn the dial to ‘deflate’ remove the rectal foley
> and wait. The tap water does two things, it
> softens and lubricates stool in your colon, and it acts as a mild
> stimulate which causes the colon to contract.
>
> In my experience the entire process takes about 40 minutes and empties me
> out like nothing I’ve tried in 35-years.
> CT scans with contrast show that Peristeen empties out 2 1/2 feet of
> colon—the average bowel program and/or
> the average non-disabled person having a bowel movement only empties about
> 6-8 inches of colon. It empties
> me out so much that I only have to go every other day and I haven’t had an
> accident in the 8-years since I’ve
> been using it.
>
> I find it is great for use at home, even better when travel, especially on
> dive trips when I want to be extra cleaned
> out.
>
> Caveat, you need a prescription from your doctor and need to be trained by
> a Peristeen trainer, which can be
> arranged through Coloplast but takes time. And insurance coverage is
> spotty at best.
>
> Here is the link:  https://products.coloplast.
> us/coloplast/continence-care/peristeen/peristeen-tai/
> peristeen-balloon-catheter/peristeen-anal-irrigation-system/
>
> I hope this helps.
> Bob Vogel
>
> On Nov 6, 2020, at 3:31 PM, Tod Santee  wrote:
>
> Hi Everybody!
>  Some of you might remember me.  I'm a moldy, oldie at the Q-List
> since the mid-90s maybe, but since I haven't checked in for a long time I
> guess I'm a bit of a newbie to many here, too.  I'm a male C5-6 Quad, 37
> yrs post injury from a fall from a tree.
>  So first off... "Hi!" to all my old friends & acquaintances here.
> And, looking forward to meeting those who are "new" since I stopped posting
> and following closely.
>  My MAIN reason for writing, tho, is this:  For many years... almost
> since the beginning of this "new normal" life... my bowel routine would
> take 3-4 hrs from suppository (or whatever other kind of bowel stimulant)
> to finish with a whole lot of digital stimulation along the way.  It's
> always been (pardon the pun) a pain in the ass!  I'm sure I'm alone on that
> last bit!! LOL!
>  Problem is, lately I've been waiting just as long but now sweating
> like crazy throughout the majority of that time.  A colonoscopy shows no
> irregularities other than some minor exterior hemorrhoids that I've had for
> at least 30yrs... i.e. no change there.
>  So I'm looking for a change in process and I've been encouraged to
> look into the P.I.E. system (P.I.E. = something like "Pulsed Irrigated
> Evacuation.") that uses a catheter to fill the bowel with water and let it
> empty into a container (lather, rinse, repeat until done). I looked it up
> online & it has a pretty decent animated video of how it works.  BUT, it's
> big & I'd guess expensive if insurance doesn't cover it.
>  I figured I'd turn to the experts here to see if anybody has tried
> this, how well it worked --our not-- and how you'd deal with things if/when
> traveling.  My wife and I enjoy world travel to not-so-accessible locations
> for scuba diving trips... at least up until a year ago.
>  Any ideas or opinions on this P.I.E. system from anybody familiar
> with it would be SUPER appreciated!!!
>
> Thanks All,
> --Tod
>
>
>

[QUAD-L] Re: Intro/Hi Again and P.I.E. Bowel Care

[Tod Santee]

Hi Eddie...
 Thanks for the info.  Somebody else suggested this as an option that
might even be better with regard to its size and portability.  Any
info/input I get is helpful since all I know so far is only what I've seen
published by the makers of the PIE.  Similar systems (I knew there had to
be some) are great to hear about.

Thank you,
--Tod


On Saturday, November 7, 2020, Eddie  wrote:

> I don't use it, but have you heard of Peristeen?
> https://products.coloplast.us/coloplast/continence-care/
> peristeen/peristeen-tai/peristeen-balloon-catheter/
> peristeen-anal-irrigation-system/
>
> On Fri, Nov 6, 2020 at 4:31 PM Tod Santee  wrote:
> >
> > Hi Everybody!
> >  Some of you might remember me.  I'm a moldy, oldie at the Q-List
> since the mid-90s maybe, but since I haven't checked in for a long time I
> guess I'm a bit of a newbie to many here, too.  I'm a male C5-6 Quad, 37
> yrs post injury from a fall from a tree.
> >  So first off... "Hi!" to all my old friends & acquaintances here.
> And, looking forward to meeting those who are "new" since I stopped posting
> and following closely.
> >  My MAIN reason for writing, tho, is this:  For many years... almost
> since the beginning of this "new normal" life... my bowel routine would
> take 3-4 hrs from suppository (or whatever other kind of bowel stimulant)
> to finish with a whole lot of digital stimulation along the way.  It's
> always been (pardon the pun) a pain in the ass!  I'm sure I'm alone on that
> last bit!! LOL!
> >  Problem is, lately I've been waiting just as long but now sweating
> like crazy throughout the majority of that time.  A colonoscopy shows no
> irregularities other than some minor exterior hemorrhoids that I've had for
> at least 30yrs... i.e. no change there.
> >  So I'm looking for a change in process and I've been encouraged to
> look into the P.I.E. system (P.I.E. = something like "Pulsed Irrigated
> Evacuation.") that uses a catheter to fill the bowel with water and let it
> empty into a container (lather, rinse, repeat until done). I looked it up
> online & it has a pretty decent animated video of how it works.  BUT, it's
> big & I'd guess expensive if insurance doesn't cover it.
> >  I figured I'd turn to the experts here to see if anybody has tried
> this, how well it worked --our not-- and how you'd deal with things if/when
> traveling.  My wife and I enjoy world travel to not-so-accessible locations
> for scuba diving trips... at least up until a year ago.
> >  Any ideas or opinions on this P.I.E. system from anybody familiar
> with it would be SUPER appreciated!!!
> >
> > Thanks All,
> > --Tod
> >
>

[QUAD-L] Intro/Hi Again and P.I.E. Bowel Care

[Tod Santee]

Hi Everybody!
 Some of you might remember me.  I'm a moldy, oldie at the Q-List since
the mid-90s maybe, but since I haven't checked in for a long time I guess
I'm a bit of a newbie to many here, too.  I'm a male C5-6 Quad, 37 yrs post
injury from a fall from a tree.
 So first off... "Hi!" to all my old friends & acquaintances here.
And, looking forward to meeting those who are "new" since I stopped posting
and following closely.
 My MAIN reason for writing, tho, is this:  For many years... almost
since the beginning of this "new normal" life... my bowel routine would
take 3-4 hrs from suppository (or whatever other kind of bowel stimulant)
to finish with a whole lot of digital stimulation along the way.  It's
always been (pardon the pun) a pain in the ass!  I'm sure I'm alone on that
last bit!! LOL!
 Problem is, lately I've been waiting just as long but now sweating
like crazy throughout the majority of that time.  A colonoscopy shows no
irregularities other than some minor exterior hemorrhoids that I've had for
at least 30yrs... i.e. no change there.
 So I'm looking for a change in process and I've been encouraged to
look into the P.I.E. system (P.I.E. = something like "Pulsed Irrigated
Evacuation.") that uses a catheter to fill the bowel with water and let it
empty into a container (lather, rinse, repeat until done). I looked it up
online & it has a pretty decent animated video of how it works.  BUT, it's
big & I'd guess expensive if insurance doesn't cover it.
 I figured I'd turn to the experts here to see if anybody has tried
this, how well it worked --our not-- and how you'd deal with things if/when
traveling.  My wife and I enjoy world travel to not-so-accessible locations
for scuba diving trips... at least up until a year ago.
 Any ideas or opinions on this P.I.E. system from anybody familiar with
it would be SUPER appreciated!!!

Thanks All,
--Tod

Re: [QUAD-L] Infinite things I hate about being a Quad

[Tod Santee]

Hi Everyone!  I've been off-list a long, long time but still lurking
occasionally.  I agree with almost all these negatives but I needed to
reply with at least ONE positive that never would have happened but for my
injury...

Had I not been injured in 1983 at age 16, my goals at the time (which I was
perfectly on track for) would have had me in the military just in time for
Gulf War One.  Instead, the terribly cold winter weather where I lived (PA)
caused me to move to AZ where I met my wife of 22 years and counting.  Had
I been in the military --even if stationed in AZ-- it is very unlikely she
would have even considered being with me.

Yep, many aspects... maybe even most... of SCI suck in a major way!  But
there are the occasional positives.  They are hard to find at times but
they're usually there.

Enjoy life as best you can, my friends!  (And, hey... try scuba diving.
 Really, the lack of gravity and moving about with NO CHAIR is Fracking
Awesome!!!)

Best wishes Everyone!  I still think of you all  follow along with
*youse*every now 'n then.


Sincerely,
--Tod


On Sat, Jul 13, 2013 at 7:25 PM, Gmail bobbiehumphre...@gmail.com wrote:

 I completely agree and totally understand!  Bobbie




 Sent from my iPad

 On Jul 13, 2013, at 9:24 PM, lwillis...@yahoo.com wrote:

 The list is indeed endless. There is not one damn positive thing about
 being a quad. We speak out our hats about new doors opening, spiritual
 growth, inspiration, and all that rot, but I have done nothing in my 43
 years of quadom that I could not have done better on two feet. A life of
 complete dependence, constant pain, depression, dysfunctional body
 functions, and endless physical breakdowns has nothing to commend it. At
 present I have 3 pressure sores, cellulitis in my left leg, sinus
 infection, stomach and bladder pain, chronic constipation, and myriad other
 fun ailments. The positive I always hear? Well, it could be worse.  Sure,
 and hell could be a little hotter.  Now that I have cheered you all up,
 good night and God bless, quad buds. Sleep tight. I won't; the arthritis in
 my neck and shoulders is killing me.

 Begin forwarded message:

 *Resent-From:* quad-list@eskimo.com
 *From:* shirley bell sbell...@cox.net
 *Date:* July 12, 2013, 12:43:31 PM EDT
 *To:* donald scott rollingl...@yahoo.com
 *Cc:* quad-list@eskimo.com
 *Subject:* *Re: [QUAD-L] Top 5 things I hate about being a Quad*

 The list is endless! I agree with everyones complaints. But I try to focus
 on
 Best,
 Shirley Bell

 www.ShirleyBellDesigns.com

 - Original Message -
 *From:* donald scott rollingl...@yahoo.com
 *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] Natural Remedies for ED for Us

[Tod Santee]

I'm going to agree with John and say it's best to work this out with a doc
or therapist first.  (Lucky for me [and my wife] that I married a
therapist!  Two birds, one stone!)

So far what works best for me regarding ED is mornings and pain.
 Unfortunately I'm not into that whole SM scene so the pain kind of kills
the mood.  BUT, for some strange reason, the best and longest-lasting
function just happens to be on those mornings I wake up feeling like I'd
been beaten and spent the night sleeping on a pile of jagged rocks!

I'm sorry it's probably not much help but I'm mentioning it because
sometimes, even after 20+ yrs of marriage, it is possible that you just
can't find what makes THAT PART work.  You and your partner(s) sometimes
have to learn to compensate with more of that which does work (and continue
trying options).

Good luck!

Regards,
--Tod

On Thu, May 24, 2012 at 10:24 AM, wheelch...@aol.com wrote:

 **
 I'm please to read that people are interested in taking their personal
 sexuality to a new level. Hopefully, it doesn't harm the body by
 experimenting and patient testing. If failure is an issue, how does one
 know what to do or take it to another level.  I would encourage all to try
 and not be disappointed by failure issues.
 Best Wishes

  In a message dated 5/24/2012 10:37:52 A.M. Central Daylight Time,
 alcibiat...@yahoo.com writes:

  This is a topic bext resolved by a doctor as quads have wildly different
 degrees of ED. Females can often experience an orgasm with very different
 stimulation. Don't be afraid to experiment, but a dr. or therapist can save
 you a lot of frustration, money, and for some, a stroke!
 best wishes,
 john

   *From:* Larry Willis lwillis...@yahoo.com
 *To:* quad-list@eskimo.com
 *Sent:* Friday, May 18, 2012 6:28 PM
 *Subject:* Fwd: [QUAD-L] Natural Remedies for ED for Us

  Well, Greg, this was a subject that just demanded further research.
 Turns out the 1987 SI issue featured the charming Miss Elle Macpherson!


 Sent from my iPad

 Begin forwarded message:

  *Resent-From:* quad-list@eskimo.comquad-list@eskimo.com
 *From:* Joan Anglin poaj...@sbcglobal.net
 *Date:* May 17, 2012 21:39:21 EDT
 *To:* 'Greg' mongrelti...@gmail.com, quad-list@eskimo.com
 *Subject:* *RE: [QUAD-L] Natural Remedies for ED for Us*

   Best answer I can imagine!  J Now for the girls = slow music,
 champagne, someone-oh well, you get my drift.  Joan

  *From:* Greg [mailto:mongrelti...@gmail.com]
 *Sent:* Thursday, May 17, 2012 2:48 PM
 *To:* quad-list@eskimo.comquad-list@eskimo.com
 *Subject:* Re: [QUAD-L] Natural Remedies for ED for Us

 Closing my eyes and picturing the cover of the 09 February 1987 issue of
 Sports Illustrated always worked for me.  If you're careful with the
 magazine, it could serve as a lifetime prescription.

  Greg
  On Thu, May 17, 2012 at 2:56 PM,  airgant...@aim.comairgant...@aim.com
 wrote:
 Hey,

 Any guys use or heard of a natural remedy for erectile dysfunction?
 Viagra, Levitra, etc are expensive plus they come with side effects.

 Thanks
 Larry

Re: [QUAD-L] pain in leg doctor results.( Greg) or others interested.

[Tod Santee]

Hi Dana, Greg, Dan and the Rest 'O the Gang!

Dana, I'll be starting with Forteo in a couple months.  I was wondering how
long you've used it and if you've noticed any changes (as in anything *other
than* the bone loss/gain/strengthening) such as how well (or not) any other
meds might work?  Bowel and/or bladder changes? Stuff like that.

I was taking Fosamax for a few years but then an endocrinologist checked me
out and saw that after all my time in bed after an accident a couple years
ago I was still dumping a lot of calcium.  I was losing more through
urine than I could take in... he said he'd never seen a loss as high as
mine (and he's been in the business a Lonn..ngg time!).  He tried me on one
3-month IV dose of Boniva (instead of the once-a-month pills) and the IV
seemed to help.  So he switched me to Reclast.  After 2 yrs of Reclast I'm
no longer losing... but still not gaining.  So now we're switching to
Forteo hoping to begin rebuilding/strengthening some bone.  I just had a
DEXA Scan that showed a little improvement.

My biggest worry now is an increase in pain that might come if Forteo can
accelerate the development of bone tissue.  I have a hip that was pretty
messed up from ischial surgeries followed by a more recent, nasty bout with
MRSA **in** (and through) my hip bone.  My hip always hurts like hell and
my back --which ended up fragile enough to crack after 9-months bed time,
needing a sacroplasty injection of cement-- contributes to burning,
shooting, or an over-stretching-feeling type back and leg pain.

I guess I'm also wondering if you (or maybe Greg or others) have heard of
increased increased incidences of HO when using Forteo.  I know it's fairly
knew but I'll never be able to read everything out there about it!  HO is
ONE problem I haven't had and hope to All-That's-Good-and-Decent that I
never have to.  I doubt many docs would think about upping my pain meds.
 I'm already on stuff that makes Oxy or Vicodin feel like an aspirin for an
amputation!


Thanks for any info or thoughts!  Sure wish I was able to get on-list
more often but I've been super busy (even after leaving work)!

Best wishes to Everyone, mi Amigos!
--Tod Santee

On Thu, Oct 27, 2011 at 2:37 PM, daa...@aol.com wrote:

 **
  Hi Greg,

 I guess HO is another one of those quadriplegic conditions we have to
 check for.
 I am on forteo injections daily and re-clasp I just got the weeks ago. My
 doctor wants to do both treatments because my bone density deteriorated.
 The hospital told me that they had positive results in bone density with
 reclapce that is done yearly.
 Dana.
 In a message dated 10/24/2011 4:01:23 P.M. Central Daylight Time,
 g...@eskimo.com writes:

 I took Oxycontin for awhile, but insurance changed and now I take
 MS-Contin.
 They are the only thing that helped. Though they did not help for my
 common quad stuff pain, tingling and burning, etc.
 Osteoporosis is more of a bone loss I think. H.O. is more of an excess
 bone growth.
 But I do have both. I have osteo in some areas, but H.O. on my hip.
 I take meds for the osteo now, some pill once a week with loots of water.
 No doc mentioned a connection.
 Greg

  Hi Greg,
 
  So sorry to hear about your pain problems associated with HO. Thank
  you for describing what that term means, as I had never heard of
  this before. What pain medication works best for you? We have often
  talked about pain medication on the list. That is such a
  unpredictable condition especially if it can inhibit joint
  movement. Is this anything like osteoporosis?   God bless you and I
  will be praying for you. Dana
  C4-5 complete, 37 years post, 58, I was a passenger in a motor
  vehicle accident at the age of 20
  In a message dated 10/23/2011 3:16:27 P.M. Central Daylight Time,

  g...@eskimo.com writes:
 
  The
  term heterotopic ossification (HO) describes bone formation at an
  abnormal anatomical site, usually in soft tissue. Cause is often
  an injury, even
  just a hard bruise. A large precent of SCI's have some form of
  (HO). It can
  grow big enough to prevent joint movement. Because it's growing
  in the muscle, it is very painful. And because we can't feel it,
  the pain can show up in different areas. Mine is an egg size lump
  on my hip. My thigh feels
  like it's being crushed, it even shows up in my dreams. I often
  dream my leg is on fire or my leg is crushed in a car door. The
  pain caused such bad
  spasms, I ended up in the ER twice in 2 days before they found
  the cause.
  My legs and abdomen were cramping so hard I was throwing up. And
  I thought my heart was spasming and it was harder to breath. Once
  it's under
  control, stopped growing. Pain meds can help a lot, but they
  cause all kinds of bowel troubles. I've tried just about
  everything to get off the pain meds to try to get my bowel
  program to work better. Greg
 
  What
  is H.O.?

Re: [QUAD-L] regarding recreational activities

[Tod Santee]

Hi Dave... I'd be interested in seeing your Draft Statement.  It sure sounds
like you have a majority of the planning (as far as what to do) pretty
well figured out.  Now just need a Who to get formally (or informally)
involved with so the logistics and start-up kinks are already worked out
from the start.  I'm impressed.

If the focus is on social, receational and vocational opportunities for
wheelchair users it seems like any nearby CIL --meaning statewide-- would be
a nice fit.  But if the closest isn't near your home or if you don't/can't
travel much or have access to good, reliable transportation, it could be
tricky.

One question, though... and it's one that *might* (only might) affect your
partnership options:  Is it your intention to work specifically and
exclusively wheelchair users or would it be something for any person with a
disability -- even a disability without a chair?  Just curious.

Thanks!  Looking forward to hearing/reading more!

Best wishes,
--Tod

On Thu, Aug 18, 2011 at 4:24 AM, Dave Krehbiel
davekrehb...@earthlink.netwrote:

  I had pursued a question regarding organizations which help to provide
 social opportunities for people in wheelchairs. Some of you have asked some
 questions: where do I live, what am I looking for, and am I looking for
 wheelchair only events.

 ** **

 To answer some of these questions, I live in Olney Maryland. I am a C4/C5
 quadriplegic who was injured in the Serb about four years again.

 ** **

 Last year, I attempted to begin a program to help quadriplegics.

 ** **

 Over the past year, I have researched and refined the concept. My original
 plans were to become a 501(c)(3) charitable organization, but I simply don't
 like to do that much paperwork, and I am concerned that any sort of
 management position could jeopardize my Medicaid and Social Security.

 ** **

 I am now looking for an organization to partner with. Specifically, I'm
 looking for an organization which is an established charity and which
 focuses on recreational and social needs (not medical or rehabilitation
 needs or vocational issues) for people in wheelchairs.

 ** **

 I have a one-page draft mission statement. I would very much appreciate any
 comments you have from reviewing the document, and I would be very happy if
 you would forward the document to potentially interested parties as you feel
 it is appropriate.

 ** **

 If you would like a copy of my draft statement, please reply to this e-mail
 and request a copy.

 ** **

 Thanks, and take care,

 ** **

 Dave Krehbiel

Re: [QUAD-L] regarding social and recreational activities for people in wheelchairs

[Tod Santee]

Hi Dave!

Good to meet you.  I'm an old-timer on the Q-List but haven't been around
much lately.  (Had trouble with my Quad-List related email acct!)  Anyway,
your message was the first I saw so... in jumping back in... I'm curious if
you're looking for social and recreational activities *for* chair-using
people or activities *with other* chair users.

What state and/or city do you live in?

If it's activity and comeraderie *with* similarly abled people and if you
live in or near a metropolitan area you should be able to contact a local
Center for Independence (or nearby Center for Independent Living [a CIL]) to
look for activities.  If there's a large college/university nearby they
likely have a Disabled Student Service office that might have some info and
possibly activities available for non-students (sports, outings and just
social).  If nothing else it can be a resource for where to look further.

If you're just looking for activity and recreation that's with or without
others with disabilities, a local YMCA - YWCA might have things to do and
people to meet.  You can also consider volunteer work with some local
organization using whatever ABILITIES you have rather than keeping a focus
on a DISability.  Neighborhoods, food banks, etc. can provide some
interesting opportunities for meeting people, networking, honing social and
work skills (in case work in your future).

I'm a C5-6 quad since falling from a tree in 1983.  I keep pretty busy with
volunteer stuff with my neighborhood and now helping to start up a community
garden (mostly phone calls, emails and face-to-face meets) plus I'm planning
to branch into some more formal advocacy work for disability rights.  In
some situations I work on being a self-advocate trying to improve local
access for myself and others by discussing ADA problems with business owners
and tell them how they can fix things before someone decides to sue for
non-compliance with federal ADA and state and local disability laws.
If you tell me where you live I might have some suggestions or know of
people who can make some.  What are your main interests?  Sports,
internet/computer, group activities?

Best of luck!
--Tod
On Mon, Aug 15, 2011 at 2:54 PM, Dave Krehbiel
davekrehb...@earthlink.netwrote:

  Does anybody know any resources which promote and encourage social and
 recreational activities for people in wheelchairs?

 ** **

 Thanks so much,

 ** **

 Dave Krehbiel

Re: FW: [QUAD-L] Fentanyl Patch

[Tod Santee]

Dave,

The fentanyl patch they're discussing is also known by he brand name
Duragesic.  It's a transdermal patch for pain control that works the same
as the Nicoderm patches for smoking ceasation.  They release a slow,
steady dose of a pain killer (in the same family as codeine, morphine, etc.)
over a 3-day period and slowly wears off so there's time to replace the
patch with a new one after its 3-day supply is gone.  The dosage is
typically measured in micrograms per hour since it is a continuous steady
release of the drug rather than a one-time pill that slowly builds up,
peaks, and then slowly drops off before you can take the next pill.

I tried it long ago and the pain relief was the best I ever had BUT I
also found that fentanyl gives me unbelievable diarrhea!!  It's rare that it
happens... only a 3% incidence last I read, but for me it was awful.  I
would no sooner finish on a commode/shower chair and it would suddenly begin
all over just as I finished getting dressed (if I was lucky I'd be able to
get UN-dressed again in time!!).

But that's just me.  For many it really does work fine.

Best regards,
--Tod

On Wed, May 11, 2011 at 10:33 AM, Dave Krehbiel
davekrehb...@earthlink.netwrote:

  Just curious... what in the world are you talking about?



 What does this patch attempt to address?



 Thanks,



 Dave Krehbiel

Re: [QUAD-L] Stop emails

[Tod Santee]

Hi Rebecca,

I'm like you... same problem with keeping up all the time.  If you'd like to
stay subscribed but not have all the Quad List emails filling your Inbox,
you can do like I did (both in my Webmail and my Outlook Express)... You can
set up a Rule or Filter to send any message with [QUAD-L] in the
subject to automatically go into that folder.  Then you can go there to see
what's going on and reply if you like without having to unsubscribe and
resubscribe.

On the other hand, you can stop all the emails with a blank message to
quad-list-requ...@eskimo.com with the Subject unsubscribe.  Then you can
check the archives when you like at
www.makoa.org/*quadlist*.htmhttp://www.makoa.org/quadlist.htm
.

Best wishes!
--Tod



On Wed, May 4, 2011 at 8:28 PM, rebecca colvin rebecca_colvin2...@yahoo.com
 wrote:

   Hey my name is Rebecca.  I enjoy reading quad list, but I just can't
 keep up with all the messages coming to my e-mail.  How can I stop them from
 coming directly to my e-mail address.  And what web site can I visit to read
 the posts when it is convenient?  Thanks.

Re: [QUAD-L] My climb up 3,000 foot mountain in my chair

[Tod Santee]

Hi Bobbie... and others interested in scuba.

Take a look at the Handicapped Scuba Assoc. at www.hsadive.com and the Dive
Heart organization at www.diveheart.org.  As for technology, One of the
people we'll be going diving with is an experienced girl who dives despite
having no arms or legs!

There are divers who are blind, high quads, paras, mentally disabled, and a
host of others.  I'm sure it's just a matter of figuring out what's needed
and having an extra buddy to help out with whatever you can't do.  (I had
trouble equalizing my ears... both eardrums broke last trip!  Now I have
someone help out when I can't.  Plus there's a special mask called a
Pro-Mask.

Check it out if interested.  I guess it's like having an underwater
ventilator (or could be made to be such).

Best wishes!
--Tod

On Sun, May 1, 2011 at 10:37 PM, Bobbie Humphreys bobbie...@aol.com wrote:

  Tod,
 Thanks for your comments. I scuba dove before my accident and always
 wished I could again. If the technology was out there years ago I would
 have given it a try, but not now. I'm very, very glad that you are enjoying
 the vast ocean life.   Bobbie

 Sent from my iPad

 On May 1, 2011, at 22:37, Tod Santee mr.san...@gmail.com wrote:

   Hey Bobbie!

 Cool story!  In the small town where I grew up very few people (then) ever
 did much outside our own small group of communities.  For some, just the
 idea of going to another state (besides NJ, only 10 miles) was
 incomprehensible.  No Way! is what everyone would say when they'd hear of
 even an able-bodied person traveling more than 2 states away!  It was one of
 the main reasons I couldn't wait to leave!  That was before my accident.
 After, whew... the idea anyone would survive like that let alone have a
 real life was unimaginable to most people I knew.

 I'm glad I never was the type to limit myself to others' expectations of
 life!  Just like your mountain climb, we all get our chances for something
 exciting.  It's just a matter of deciding when to take that chance!

 Scuba is my latest thing.  Incredible being weightless, no chair, drifting
 in the current and seing things nobody's ever seen.  The Handicapped Scuba
 Assoc. I mentioned in my last post takes the stand that if you can breath
 you can scuba!

 Best wishes Folks!
 --Tod

 On Thu, Apr 28, 2011 at 4:18 PM, wheelch...@aol.com wrote:

  I bet that was both fun and exciting.  Something your mind will never
 forget.  Thanks for sharing.
 Best Wishes

  In a message dated 4/27/2011 3:15:53 P.M. Central Daylight Time,
 bobbie...@aol.com writes:

 Hi All,
I want to to share a true story with you all. In 1980 7 yeast post I
 was 25 and in college when I received my first van. My dream was to always
 drive 3,000 mile's cross country camping the entir way when I got the van, I
 just didn't know who was going to go with me. My sister who was also in
 college, Patti who is a year younger than me, heard about my dream and
 offered to help drive and take complete care of me.
   I got the van completed in June and we drove off July 5th 1980, it had
 under 500 miles on it when we left New Jersey. We had many planned stops,
 one with friend's, who are teacher's, every summer drive out to Glacier
 Nation Park in Montana with a large group of high school student's. We met
 up with them at the end of July at a large KOA camp ground at Logan's Pass
 just off the Going to the Sun highway, there were about 25 student's and 5
 chaperons'.
 Now, I must describe the manual chair I was in. I had gotten angry at my
 chair one day years before and tossed in the trash the seat belt, 1 leg
 rest (then I crossed my ankles) and BOTH arm rest's OH and back in the day
 this manual chair weighed 40 pound's and I weighed around 110 pound's.
 At the visitor's center the elevation is 6,639 feet with the top being
 9,500 feet in 1.25 miles. So, if you think about the pitch/grade it is
 EXTREMELY STEEP near the top. At the beginning of the climb there was a
 board walk with 177 steps then it turned into a gravel path, this is where
 most people turn around. Patti, Tracy, Carol  Bill would take turn's
 pushing me up and up and up but when the acned got VERY steep one would push
 me then the next would push them, then the next push the next person until
 we had a chain of people pushing me at the same time. There were a LOT of
 fellow climber's that just couldn't believe that they were bringing me to
 the top of this mountain and they took ton's of picture's, one person took a
 picture of our chain push as we sang …driving that train, high on
 cocaine, Casey Jones you better watch your speed. As we got higher and
 higher we started seeing mountain goat's and patch's of snow. Most of the
 time one person would push while 2 other's would be on either side of me
 pulling until we got to a section were it was so narrow that 2 people
 couldn't walk side by side.
   (On the way back down it was VERY MUCH HARDER for them to hold me back.
 At one point Patti

Re: [QUAD-L] My climb up 3,000 foot mountain in my chair

[Tod Santee]

Hey Bobbie!

Cool story!  In the small town where I grew up very few people (then) ever
did much outside our own small group of communities.  For some, just the
idea of going to another state (besides NJ, only 10 miles) was
incomprehensible.  No Way! is what everyone would say when they'd hear of
even an able-bodied person traveling more than 2 states away!  It was one of
the main reasons I couldn't wait to leave!  That was before my accident.
After, whew... the idea anyone would survive like that let alone have a
real life was unimaginable to most people I knew.

I'm glad I never was the type to limit myself to others' expectations of
life!  Just like your mountain climb, we all get our chances for something
exciting.  It's just a matter of deciding when to take that chance!

Scuba is my latest thing.  Incredible being weightless, no chair, drifting
in the current and seing things nobody's ever seen.  The Handicapped Scuba
Assoc. I mentioned in my last post takes the stand that if you can breath
you can scuba!

Best wishes Folks!
--Tod

On Thu, Apr 28, 2011 at 4:18 PM, wheelch...@aol.com wrote:

  I bet that was both fun and exciting.  Something your mind will never
 forget.  Thanks for sharing.
 Best Wishes

  In a message dated 4/27/2011 3:15:53 P.M. Central Daylight Time,
 bobbie...@aol.com writes:

 Hi All,
I want to to share a true story with you all. In 1980 7 yeast post I was
 25 and in college when I received my first van. My dream was to always drive
 3,000 mile's cross country camping the entir way when I got the van, I just
 didn't know who was going to go with me. My sister who was also in college,
 Patti who is a year younger than me, heard about my dream and offered to
 help drive and take complete care of me.
   I got the van completed in June and we drove off July 5th 1980, it had
 under 500 miles on it when we left New Jersey. We had many planned stops,
 one with friend's, who are teacher's, every summer drive out to Glacier
 Nation Park in Montana with a large group of high school student's. We met
 up with them at the end of July at a large KOA camp ground at Logan's Pass
 just off the Going to the Sun highway, there were about 25 student's and 5
 chaperons'.
 Now, I must describe the manual chair I was in. I had gotten angry at my
 chair one day years before and tossed in the trash the seat belt, 1 leg
 rest (then I crossed my ankles) and BOTH arm rest's OH and back in the day
 this manual chair weighed 40 pound's and I weighed around 110 pound's.
 At the visitor's center the elevation is 6,639 feet with the top being
 9,500 feet in 1.25 miles. So, if you think about the pitch/grade it is
 EXTREMELY STEEP near the top. At the beginning of the climb there was a
 board walk with 177 steps then it turned into a gravel path, this is where
 most people turn around. Patti, Tracy, Carol  Bill would take turn's
 pushing me up and up and up but when the acned got VERY steep one would push
 me then the next would push them, then the next push the next person until
 we had a chain of people pushing me at the same time. There were a LOT of
 fellow climber's that just couldn't believe that they were bringing me to
 the top of this mountain and they took ton's of picture's, one person took a
 picture of our chain push as we sang …driving that train, high on
 cocaine, Casey Jones you better watch your speed. As we got higher and
 higher we started seeing mountain goat's and patch's of snow. Most of the
 time one person would push while 2 other's would be on either side of me
 pulling until we got to a section were it was so narrow that 2 people
 couldn't walk side by side.
   (On the way back down it was VERY MUCH HARDER for them to hold me back.
 At one point Patti had my chair tipped back at a VERY steep pitch which was
 all gravel, she lost her footing and we both started skidding towards the
 cliffs edge. When we stopped I asked Patti …what would have done if I went
 over the edge? She just said I was going with you then)
  Well, we finally made it to the top which took about 2 1/2 hours and
 the view was absolutely breath taking. (If you google Hidden Lake Montana
 you'll see a picture of the top, you could ALS google Logon Pass Montana
 and see a picture of the mountain from the bottom) I cried when we got to
 the top, I felt - and still do - that if I can get to the top of this
 mountain ANYTHING IS POSSIBLE FROM NOW ON!
So, that's my story. I truly hope it inspire's someone to try something
 that they had trepidations that they could or couldn't do. Bobbie


 Sent from my iPad

[QUAD-L] Service Animals Super Shuttle

[Tod Santee]

Dear Friends,

I'm not sure how many of you travel (I don't remember many, but that was as
of quite some time ago.) and how many have Service Animals (more than the
previous group, I think)... BUT, IF YOU DO... or if you know someone who
does, please read this quoted message below and consider passing it on to
people you know.

I try to keep up with reading the group's messages to keep up with you-all's
lives.  I wish I could keep up with posting to the group more.  I miss the
Quad Comradery (Quadradery? Tough to say, eh?)

I'm prepping for a new trip, myself.  We're going scuba diving in Cozumel.
I got my scuba certification last year.  It really is something EVERYone
here should try.  The Handicapped Scuba Assoc. is great at making things
work for folks with nearly ANY disability!  Check www.hsascuba.com ... but
that's all pretty far off my topic:  Service Animals and Super Shuttle

Thanks!

Best wishes, All,
Tod Santee
--- Here it is 
--- On Fri, 4/29/11, le3...@aol.com le3...@aol.com wrote:

From: le3...@aol.com le3...@aol.com
Subject: [CDR-X] USDOJ -have you have experienced problems w/ service
animals on airport shuttle
To: cdr-membersxcha...@yahoogroups.com
Date: Friday, April 29, 2011, 9:05 AM

The U. S. Department of Justice (DOJ) is interested in learning if you have
encountered access problems with your assistance dog on any of the Super
Shuttles that transport passengers to and from many airports.

If you have experienced a denial of service or less than appropriate service
on the Super Shuttle, please contact the U. S. Department of Justice and
share your experiences. They've asked us to e-mail Sue Crawford at this
address: _Susan.Crawford@usdoj.gov_ (mailto:susan.crawf...@usdoj.gov)

The more feedback, the betterso please consider furthering the DOJ's
effort to gather input from our community on this matter by passing this
request along to others.

[Non-text portions of this message have been removed]

Re: [QUAD-L] Hi Everyone! And Kindle Question

[Tod Santee]

Hey Quadius -- Sorry to hear about your mom.  I hope you're still doing well
as more time passes.

Thanks for the Kindle info.  I think it was the e-Ink screen you were trying
to think of that wasn't backlit.  I ended up deciding on the Nook (the
original, not Nook Color).  I just couldn't hit the buttons on the Kindle
with my fingers like I do other keyboards because they are so
smoothly rounded and only slightly raised.  My finger slid off just as I got
enough pressure to activate it.

The Nook has a small touch screen below the reading area with a touch
keyboard for book searching and buying and for web surfing (if needed).  It
was available with Wi-Fi or Wi-Fi + 3G.  Wi-Fi was enough for me.  The Nook
Color is a full screen touch sensitive model but didn't have many other
benefits I could see.

I use the Wi-Fi quite a bit because I typically make purchases using the
computer and they simply migrate directly to the Nook without me doing
anything.  Plus, I can read on my computer screen and rearrange the
shelves (classics, Stephen King, Tech Stuff, etc.) on the computer and/or
Nook and whichever I use next is set up exactly like the other... and I'm
still up to date in both places on which page I left off reading.  Basically
saying the two sycronize quite seamlessly without me doing anything to make
it happen.

The Nooks both have user-replaceable batteries whereas the Kindles need an
authorized dealer to do it.  And you can easily add memory to the Nooks by
adding a microSD card in the back.

Mostly, though, it was the touch screen versus buttons that sold me on it.
*I love it!!!*  I carry it on my lap everywhere I go and it's always open
to the correct page at the press of the ON switch!


Best regards!
--Tod

On Fri, Feb 4, 2011 at 5:56 PM, Quadius quad...@gmail.com wrote:

 Sorry I am so late, but I really haven't been on the list for a couple of
 months because my mother passed away early in December.

 As for the Kindle, I can understand why some people don't like them, but I
 absolutely am in love with mine.  When I first got it I was disappointed by
 the fact that it went to stand by pretty quickly, but I finally figured out
 how I would be able to operate the thing using a mouse stick.

 If you're wanting to surf the web or use applications like that, I would go
 with the Ipad.  I don't have one, but I have looked at it and found it to be
 great.  Then again, I've heard wonderful things about the Nook.  For me the
 Kindle was a better option because it had bigger page turning buttons on the
 side.  Not to mention it has the wonderful (I can't really name of this
 feature) electronic screen which doesn't use a backlight.  If I wanted to
 read from a computer, I would just simply turn on my computer.

 So, I would recommend either the Nook without the color or or the Kindle if
 you just want to use it as a book reader or magazine/newspaper reader.

 If you're wanting to do more, I would look at either the Ipad or the Nook
 with color.  From what I have been told the Ipad is better, but I believe
 it's more expensive.

 I'm using mine just for reading, so I'm not using the wireless feature.
 From what I have read about these it is good to use if you get newspapers or
 have other subscriptions.  One more thing I forgot, if you have the ability
 to check out books electronically from a local library, the Nook is better
 than the Kindle.  And that's from someone who's using the Kindle and loves
 it.
 Q



 On Sat, Dec 18, 2010 at 1:31 PM, Tod Santee mr.san...@gmail.com wrote:

 Hi Everybody out in the Land of Q's!

 Many of the old-timers here probably remember me.  I kept getting kicked
 out by eskimo.com because my email was listed as a spammer (?? NO Idea
 why!) so I decided to re-join a while back using Gmail.  So far-So good
 (fingers crossed).

 My info... My name's Tod, age 43, C5-6, 27yrs post from falling from a
 tree.  I moved to Tucson, AZ, after 6 unhealthy years in the cold PA
 climate.  AZ's warm, dry weather helped a lot but as I get older it seems to
 be getting cooler here (just getting spoiled, mostly).  LOVE to travel!
 Been to Costa Rica 4-5 times, took public busses and ferrys to get from
 Seattle to the Olympic Penninsula to Victoria and Vancouver and an
 accessible Amtrak back to Seattle (interesting with no scheduled
 transports), and this summer I got my *SCUBA certification* and used
 frequent flyer miles/points (mostly from strategic credit card spending) to
 go to Thailand and Indonesia for my first ocean dives while touring around
 Bali for 3 weeks!!  DAMN COOL!

 I taught high school biology from '96 to 2010.  (Curently deciding whether
 to continue or change course.)

 Now I'm thinking abouta Kindle and decided to come out of lurking mode to
 get the advice of those I consider Experts... You All.

 I'm wondering how many of you use them.  Are they useful for anything
 besides just book reading without the book?  Also, I notice they have Wifi
 or Wifi/3G

Re: [QUAD-L] has anyone ever heard of this problem

[Tod Santee]

I had this happen just a few years post-injury.  While transferring out of
bed, my eyes rolled back, I stopped breathing and my mom didn't hear a
heartbeat for a few seconds after she threw me back in bed.

I ended up back in my old rehab hospital on a tilt/standing table twice a
day for anywhere from 20 minutes and working up to an hour... gradually
increasing the tilt until I was at a nearly full standing position.

All the while I was on the table they also had me using the spirometer to
measure lung capacity and ability to blow it all out.

It wasn't unusual to get dizzy, or even completely black out a few seconds,
when I was first getting up in the morning but this time was different... I
was quickly turning blue and didn't snap out of it as soon as I was back
down as I typically would.

The docs said they didn't think anything really could have been done.  It
was a phenomenon they's seen on rare occasions and nobody had a decent
enough chance to study it since it was never predictable.  This was in
'85-86ish.

Best wishes for your friend!

Sincerely,
--Tod

On Fri, Jan 28, 2011 at 9:34 AM, gah17...@aol.com wrote:

  Good morning,

 I have a friend who is a quadriplegic C5-6, and during the past six months
 he has been in the hospital five times.  I don't know all the facts, I will
 try to determine more information, but one symptom is low blood pressure.
 The idiots in the hospital take urine cultures and tell him that he has a
 bladder infection.  Duh!

 Last Sunday he started a gurgling sound, eyes rolled back in his head and
 appears to have a seizure.  The ambulance was called and his heart stopped
 twice, but was restarted.  The only thing that is abnormal is the fact that
 his body is not processing sodium and they must give him intravenous sodium.

 The heart doctor says he has no problem, the kidney doctor says that his
 kidneys look good, in my opinion they're all a bunch of idiots.

 Anything sound familiar, other than the doctors are idiots?


 Glenn Henry

Re: [QUAD-L] OMG

[Tod Santee]

Well, Eric...  So whatd'ya think?  Good, Bad, Impartial?  Left, Right,
Centrist?  Too much, too little, not enough? (almost an hour)

Me... I'm *primarily* curious in knowing just how many folks
*really*watched the whole thing, and/or the Republican rebuttal,
and/or perhaps the
Bachman/Tea Party response/rebuttal (if it was aired on your station).  And,
of those who watched, what did they *hear* in that which was said?
I'm very often dismayed at how much arguing about politics happens when it's
compared to how much people actually watch, and more importantly pay
attention to all sides of an issue, when our officials are working in
Congress or speaking to the media live (not edited soundbites for/from
pundits).

I'm glad at least two of us decided to hear what Mr. Prez had to say.  Good
Deal, my man!

Best regards,
Tod Santee
Tucson, AZ


On Tue, Jan 25, 2011 at 6:55 PM, Eric W Rudd c5sc...@gmail.com wrote:

  I am keeping an open mind...but thinking 'what the hell'...let's hear
 what u have to say mr president.

 Eric W Rudd
 c5sc...@gmail.com

Re: [QUAD-L] Microphone for speech recognition software?

[Tod Santee]

Todd,

I would suggest some of the higher end Labtech mics would be an option.
They are what Dragon used to sell with voice recog. programs.  Another is
almost ANY Plantronics mic.

I use a bluetooth enabled Plantronics mic in conjunction with a very cheap
Belkin bluetooth dongle purchased at OfficeMax (they have a good selection
of wired and bluetooth mics, including Plantronics).

I don't work for Plantronics or own stock...LOL.  It's just that my very
first cordless phone back in '84-'85 was a Plantronics Liteset built such
that the numbered keypad had a belt clip and it was wired to
a headset comparable in size and sound to today's better bluetooth
earpieces.
I've used several headsets and earpieces since then but none has had better
quality than the different Plantronics I've owned.  The one I have now is
used to switch between Dragon and my home phone or between my home and cell
phones.

Good luck to your friend.  Everyone has their own tastes and needs.  Hope
this was helpful.

Best regards,
Tod Santee


On Sat, Jan 8, 2011 at 8:36 PM, t...@toddc5quad.com wrote:

 Hi everyone,

 I have a friend who is using a Mac Computer and he is having trouble
 finding a good microphone to work with the speech recognition software.

 His voice does tend to change some while he's talking so the cheaper
 microphones don't work very good.

 He can't use a regular headset but something like a Bluetooth for a cell
 phone might work or something on the desk.

 Any ideas or suggestions would be greatly appreciated.

 Todd Canaday

[QUAD-L] On Costa Rica ...and Panama

[Tod Santee]

Hi Bob...

Yeah, Erik just called me last night. He's visiting family in L.A. I knew
he's been thinking about a move to Panama for some time now. He mentioned it
about 2 yrs ago when he was looking at a new van. But he said he's committed
to CR for at least the next 6 months.

He's been planning the move to Panama for a couple years due to high costs
for non-Ticos (non-Costa Ricans) trying to run a small business like his
and/or the high import tax on the new accessible van he wanted to bring into
the country (it's nearly 55% of the vehicle's cost!!). That and some
monthly, nightmarishly bureaucratic messes he had to deal with to fully get
his *tour operator + taxi* licenses up-to-date. There is no specific
accessible tour operator equivalency license --and he can't get what he
needs-- despite his attempts with the tourist bureau armed with many letters
from his past clients saying they simply *cannot* visit (and therefor spend
their money), leave any of the more-than-several cruise ships that stop
there, or get around the country in any meaningful way without the special
type of service he offers. And he's the only one in Costa Rica who does it.

It's an absolutely beautiful country with very friendly, down-to-earth
people --at least where we went-- and we will miss our trips there if he
leaves before we get another chance to go. All of the busses have the blue
Handicapped Accessible sign on the front and back because it's required.
But, to illustrate the craziness, it's only the sticker that's required...
not an accessible means to get on! Very odd!

Best wishes  Happy 2011

--Tod Santee


On Thu, Dec 23, 2010 at 2:23 PM, bob quinn r...@sockets.com wrote:

Thanks Tod!

Unfortunately, it looks like Erik is moving to Panama...



At 03:53 PM 12/23/2010, Tod Santee wrote:

Bob,

Over the years and several trips to Costa Rica I've become friends with a
guy who drives an accessible van. It has a 4-point tiedown and heavy duty WC
lift. He has regular tours he gives but we've dragged him all over the
country! If you ever consider going I can try to hook you up. In the
meantime, he has a website at
*www.gowithwheelchairs.com*http://www.gowithwheelchairs.com/. At one
point, Sherry and I were his background models on some pages.

Best regards!
--Tod

On Wed, Dec 22, 2010 at 3:25 PM, bob quinn *...@sockets.com*r...@sockets.com
wrote:

Hi Tod,

You're adventurous spirit and (even more important) actions are inspiring! I
love the idea of going to Costa Rica, and the fact you've done it outside
the typical tourist realms makes it seem a LOT less crazy an idea than I'd
imagined.

Re: [QUAD-L] Hi Everyone! And Kindle Question

[Tod Santee]

Bob,

Over the years and several trips to Costa Rica I've become friends with a
guy who drives an accessible van.  It has a 4-point tiedown and heavy duty
WC lift.  He has regular tours he gives but we've dragged him all over the
country!  If you ever consider going I can try to hook you up.  In the
meantime, he has a website at www.gowithwheelchairs.com .  At one point,
Sherry and I were his background models on some pages.

Best regards!
--Tod

On Wed, Dec 22, 2010 at 3:25 PM, bob quinn r...@sockets.com wrote:

 Hi Tod,

 You're adventurous spirit and (even more important) actions are inspiring!
  I love the idea of going to Costa Rica, and the fact you've done it outside
 the typical tourist realms makes it seem a LOT less crazy an idea than I'd
 imagined.

 As for the Kindle, I don't like it.  Tried one and sent it back!  Needs too
 much hand/finger dexterity and I thought the screen lacked sufficient
 contrast.

 But, coincidentally, I just came from BarnesNoble, where I tried out the
 Nook Color and LOVED it.  The size is great, touch-screen responsive, screen
 is hi-rez and browsing websites was a pleasure, they were so much more
 readable than on my computer!  That surprised me.

 Its not at all as versatile as an iPad (no camera and no apps) ...but, it
 runs Google's Android OS under the hood and I've rumors that BN is planning
 to create a Developers' program and App Store.  In the mean-time, there is
 http://nookdevs.com for the more adventurous willing to void their
 warranty to unlock the device (and its potential).

 I didn't buy one today, but I came close!  I have other stuff on my plate
 right now and didn't want the distraction.  Also want to see if the price
 goes down soon ...though at $249, it is already a bargain.

 At 12:35 PM 12/22/2010, Tod Santee wrote:
 Hi Lori  Everyone else,
 
 I must say that when we travel we really go out of our way to avoid
 posh.  Neither of us likes going somewhere where many people live in very
 basic homes but then finding all our places to be all the comforts of
 home.  If that's what we liked we'd probably just stay in the US and get
 rooms in the Marriotts and Hiltons.  No, we prefer to be somewhat immersed
 in the true culture.  We eat at local markets and restaraunts intended for
 locals.  Example: At one market in Bali we were served rice with chicken,
 veggies and spices packed in a banana leaf by hand (bare hands!)  We
 definitely took the roads less traveled (especially in Thailand!).
 
 At one time, early in our marriage, I thought I wouldn't be traveling like
 this if I hadn't married Sherry but then realized I had it backwards... I
 doubt Sherry and I would have been together if she didn't like traveling
 like this.
 
 It's great that she can help and loves exotic places on the cheap.  But
 then I think back to when I moved to AZ... it was just as much a challenging
 adventure.  I had things set up such that someone I never met would be doing
 my PCA care (at least at first).  I packed up in PA, had my parents drive me
 out and unload.  They stayed for 4 days and left on schedule even though the
 guy I had arranged had been arrested and was in jail for some non-violent
 offense by the time I got here.  I never did meet him but I managed to
 scramble to find somebody else.
 
 I've always had that daring and adventurous spirit.  That's how I talked
 Sherry into taking Scuba classes and getting our certifications.  We can
 scuba anywhere in the world now!  (And after her first time, she LOVES IT.
  She's been looking for new places to vacation AND dive ever since we got
 home!)  I think it's that spirit that gave me the ability to survive after
 my accident when I lived in such a closed community and wsas rarely able
 to go anywhere due to cold and weather issues.  (Thank God I had a computer
 and 2400 baud modem!! Haha!)
 
 Now, as for the Kindle -- It looks like they aren't a good option.  That's
 probably why I didn't get many responses.  On the other hand, the Nook (from
 Barnes  Noble) looks more promising with its touch screen rather than tiny
 buttons.  Plus it has a web browser.  I'm going out to check them out today.
 
 But then, if the Nook looks like a good option, I have to decide between
 WiFi  vs. WiFi+3G.  And how much are Nook eBooks compared to Kindle's?  I'm
 also wondering how much the 3G will be of use.  Can I use its WiFi when I'm
 out of the country to browse the web and newspapers back home?  Or do I need
 the 3G for that.  In fact, I have to find out if the 3G for a Nook even will
 connect outside of the US (out of ATT's main Nook market).  And finally, I
 know the 3G connection for Kindle has no monthly fee but I haven't heard the
 same --or had it verified-- about Nook's 3G connectivity.
 
 Oh so many things to consider.  And I thought shopping for computers was
 difficult!
 
 Best to All.  And a Merry Christmas to everyone I don't connect with
 before then!
 
 Sincerely,
 -- Tod
 
 On Sat, Dec 18, 2010 at 5:40 PM

Re: [QUAD-L] Hi Everyone! And Kindle Question

[Tod Santee]

 pressure off my butt ... sitting back up (even then)
 kind of defeats the whole purpose of staying/getting off of my butt.

 Besides that, over the years it has been more of an inconvenience to do
 that anyway for both my husband and myself.  So..

 I found out there was/is a Kindle application that can be downloaded for
 free off the net and I (or anyone) can read books on it using my computer in
 the bedroom while *still laying back* with my head elevated around 30°. A
 relaxing position.

 Back in April when I found out I was going to be bedridden 24/7 for several
 months ... audio books and movies just were not enough and so in May of this
 year my husband purchased me a tablet kiosk computer (Sahara Slate PC) that
 is 12 x 12.  And I can use it in this very reclined position USING ALL
 VOICE.  And, of course, have access to the net by wireless networking.

 I really wanted to start reading again and when I came upon the information
 that Kindle can be used on a PC (and therefore bigger print) we downloaded
 the free application and I am actually enjoying reading books this way!
 Although, because I did not download the application until semi-recently I
 am still on my first book.  But the font is such a perfect size and so
 comfortable to read... that it is *really like reading* *the printed page*
 .

 Friends can share downloaded books (by e-mailing them) also so I actually
 have two other books already downloaded (for free from other friends) to
 begin reading next.  So I haven't spent a penny of my own yet on it.
 Although I have noticed that Kindle downloads are not expensive at all.
 Most often, cheaper than the book itself!

 You are also correct by saying that a person has to already have the book
 downloaded into memory to read it.

 So *for my personal reasons* of not being able to read the usual way
 anymore... it actually has benefited me and my life!  And I would have never
 dreamed I would be saying that more than a couple months ago!!!  But for
 other people, I don't know if they have a fascination with the gadgetry or
 what but if it were not for my situation I think it is a silly product
 overall.

 Did you retire from teaching before the school year started or why did you
 stop teaching?  Please don't leave me hanging on that!

 Lori

   On Sat, Dec 18, 2010 at 11:31 AM, Tod Santee mr.san...@gmail.comwrote:

 Hi Everybody out in the Land of Q's!

 Many of the old-timers here probably remember me.  I kept getting kicked
 out by eskimo.com because my email was listed as a spammer (?? NO Idea
 why!) so I decided to re-join a while back using Gmail.  So far-So good
 (fingers crossed).

 My info... My name's Tod, age 43, C5-6, 27yrs post from falling from a
 tree.  I moved to Tucson, AZ, after 6 unhealthy years in the cold PA
 climate.  AZ's warm, dry weather helped a lot but as I get older it seems to
 be getting cooler here (just getting spoiled, mostly).  LOVE to travel!
 Been to Costa Rica 4-5 times, took public busses and ferrys to get from
 Seattle to the Olympic Penninsula to Victoria and Vancouver and an
 accessible Amtrak back to Seattle (interesting with no scheduled
 transports), and this summer I got my *SCUBA certification* and used
 frequent flyer miles/points (mostly from strategic credit card spending) to
 go to Thailand and Indonesia for my first ocean dives while touring around
 Bali for 3 weeks!!  DAMN COOL!

 I taught high school biology from '96 to 2010.  (Curently deciding whether
 to continue or change course.)

 Now I'm thinking abouta Kindle and decided to come out of lurking mode to
 get the advice of those I consider Experts... You All.

 I'm wondering how many of you use them.  Are they useful for anything
 besides just book reading without the book?  Also, I notice they have Wifi
 or Wifi/3G... is there a major benefit to the 3G if al you can do is load
 books and/or newspapers?  Wouldn't you already have what you're reading
 loaded to memory?  Or is there a web surfing capability I haven't heard
 about?

 So... It's good to see so many friends still hanging around!  And I'm
 happy to say Hi to the new folks in the past year/year-point-five I
 haven't yet met.

 And Thanks A Bunch to anyone who might be able to offer Kindle insights or
 answers!

 Best wishes  Happy Holidays, friends!
 --Tod Santee




 --
 Lori
 Age - 46
 C4/5 complete quad, 31 years post
 Tucson, AZ

Re: [QUAD-L] Hi Everyone! And Kindle Question

[Tod Santee]

Hi Lucinda!  I've never been yo Portland.  I hear it's a nice place and very
community-friendly.  I usually check out a city's transportation web site.
It seems the easier to find, more prominently displayed their access options
are the better the services.  However, like all general statements, it can't
be taken to mean it works every time.

Best wishes!

On Sat, Dec 18, 2010 at 4:52 PM, LJT ljtbe...@yahoo.com wrote:

   hello Tod,
 Welcome Back!  In your travels, have you ever been to Portland?  If so how
 is the public transport for us quads? My son recently moved out there and
 I'd like to go visit him.

 *Lucinda
 C-4,5 complete
 July 31, '05*
 *Mpls., MN*



 --- On *Sat, 12/18/10, Tod Santee mr.san...@gmail.com* wrote:


 From: Tod Santee mr.san...@gmail.com
 Subject: [QUAD-L] Hi Everyone! And Kindle Question
 To: quad-list@eskimo.com
 Cc: sant...@cox.net
 Date: Saturday, December 18, 2010, 12:31 PM


  Hi Everybody out in the Land of Q's!

 Many of the old-timers here probably remember me.  I kept getting kicked
 out by eskimo.com because my email was listed as a spammer (?? NO Idea
 why!) so I decided to re-join a while back using Gmail.  So far-So good
 (fingers crossed).

 My info... My name's Tod, age 43, C5-6, 27yrs post from falling from a
 tree.  I moved to Tucson, AZ, after 6 unhealthy years in the cold PA
 climate.  AZ's warm, dry weather helped a lot but as I get older it seems to
 be getting cooler here (just getting spoiled, mostly).  LOVE to travel!
 Been to Costa Rica 4-5 times, took public busses and ferrys to get from
 Seattle to the Olympic Penninsula to Victoria and Vancouver and an
 accessible Amtrak back to Seattle (interesting with no scheduled
 transports), and this summer I got my *SCUBA certification* and used
 frequent flyer miles/points (mostly from strategic credit card spending) to
 go to Thailand and Indonesia for my first ocean dives while touring around
 Bali for 3 weeks!!  DAMN COOL!

 I taught high school biology from '96 to 2010.  (Curently deciding whether
 to continue or change course.)

 Now I'm thinking abouta Kindle and decided to come out of lurking mode to
 get the advice of those I consider Experts... You All.

 I'm wondering how many of you use them.  Are they useful for anything
 besides just book reading without the book?  Also, I notice they have Wifi
 or Wifi/3G... is there a major benefit to the 3G if al you can do is load
 books and/or newspapers?  Wouldn't you already have what you're reading
 loaded to memory?  Or is there a web surfing capability I haven't heard
 about?

 So... It's good to see so many friends still hanging around!  And I'm happy
 to say Hi to the new folks in the past year/year-point-five I haven't yet
 met.

 And Thanks A Bunch to anyone who might be able to offer Kindle insights or
 answers!

 Best wishes  Happy Holidays, friends!
 --Tod Santee

[QUAD-L] Hi Everyone! And Kindle Question

[Tod Santee]

Hi Everybody out in the Land of Q's!

Many of the old-timers here probably remember me.  I kept getting kicked out
by eskimo.com because my email was listed as a spammer (?? NO Idea why!) so
I decided to re-join a while back using Gmail.  So far-So good (fingers
crossed).

My info... My name's Tod, age 43, C5-6, 27yrs post from falling from a
tree.  I moved to Tucson, AZ, after 6 unhealthy years in the cold PA
climate.  AZ's warm, dry weather helped a lot but as I get older it seems to
be getting cooler here (just getting spoiled, mostly).  LOVE to travel!
Been to Costa Rica 4-5 times, took public busses and ferrys to get from
Seattle to the Olympic Penninsula to Victoria and Vancouver and an
accessible Amtrak back to Seattle (interesting with no scheduled
transports), and this summer I got my *SCUBA certification* and used
frequent flyer miles/points (mostly from strategic credit card spending) to
go to Thailand and Indonesia for my first ocean dives while touring around
Bali for 3 weeks!!  DAMN COOL!

I taught high school biology from '96 to 2010.  (Curently deciding whether
to continue or change course.)

Now I'm thinking abouta Kindle and decided to come out of lurking mode to
get the advice of those I consider Experts... You All.

I'm wondering how many of you use them.  Are they useful for anything
besides just book reading without the book?  Also, I notice they have Wifi
or Wifi/3G... is there a major benefit to the 3G if al you can do is load
books and/or newspapers?  Wouldn't you already have what you're reading
loaded to memory?  Or is there a web surfing capability I haven't heard
about?

So... It's good to see so many friends still hanging around!  And I'm happy
to say Hi to the new folks in the past year/year-point-five I haven't yet
met.

And Thanks A Bunch to anyone who might be able to offer Kindle insights or
answers!

Best wishes  Happy Holidays, friends!
--Tod Santee