Re: [QUAD-L] Pressure on the privates!

[Billy Lang]

I know I am late to the party but I found my experiences might help here. I 
tore open my scrotum to the point where my testes were ready to fall out. Not a 
pretty picture, but we used Aquacel after stitching (36 in the ER) did not 
work. The product closed the wound within three weeks. In 30 years I will not 
tolerate downtime. We used the sanitary  napkin to keep my boys from any 
pressure from the cushion.


One otherI thing, I have a stage four wound on my sacrum caused by a hospital 
bed. Those of you who have tilt, should always bring the feed up first. We are 
tetraplegics, hands, feet make us quads. The skeleton that moves inside the 
body and gives us pressure sores from the inside makes skin the fifth element.

It did not hurt until I went to the local hospital for a five day stay. Started 
on the Friday and by Monday I was bleeding out. Did not get turned because he 
told me the bed would suffice.

Good luck with everything my tetra buddies


> On Mar 7, 2019, at 8:26 PM, Eric Olson  wrote:
> 
> When I said the "sling is the culprit" I didn't mean the sling straps were a 
> problem, just that, when you're in the sling, your ass is hanging out.  That 
> sometimes causes me to end up sitting on my balls in the chair.  You ladies 
> are getting quite the education 
> 
> On Thu, Mar 7, 2019 at 6:03 PM Randy Anderson  > wrote:
> Hello everybody.
> In my opinion I would suggest:
> Starting with the Caregivers, the thigh straps on your sling should be kept 
> closer to the knee then to the groin. For me, the thigh straps go through 
> each other and anchor to your Hoyer on the opposite side of the leg that it 
> supporting (I.e. the sling that goes under the right thigh goes through the 
> sling that goes under the left thigh, and the right sling connects to the 
> left hook and the left sling connects to the right hook. When you keep the 
> sling low towards towards the knee and thread them through each other it 
> should keep the sling away from the scrotum, otherwise the sling can 
> pinch/rub/bruise the scrotum. You should watch for this when they're putting 
> you in your wheelchair and especially your shower chair.
> After I'm in my wheelchair and been positioned correctly I have my caregiver 
> checked my thigh strap that holds my catheter to make sure it's towards the 
> knee otherwise if it's too high the scrotum can rub on it and cause 
> irritation. I have them check the catheter so that it's not kinked or 
> crowding the scrotum then have them lift my "junk".
> 
> I like sitting in the sun in the summer and winter and I find that if I get 
> to warm the scrotum tends to give me problems. Anything from being red, raw 
> like a slight rug burn, or getting a few very small blisters but I have never 
> had a sore/wound. So I try to stay out of the sun or getting to warm for a 
> while. If it's not gone overnight or in a day or 2 I have let it air dry 
> during the day, by going without pants and with a sheet or towel over my 
> waist.
> I would think that doing few extra weight shifts may help also, but maybe use 
> recline instead of a tilt position.
> Don't be afraid to let you caregivers know what you would like them to do and 
> why (nicely) and be open to suggestions should they have any.
> 
> It seems like we're always having problems of some sort and it's easy to let 
> things slide but probably only gets worse.
> Good luck and take care, Randy
> 
> 
> 
> On Thu, Mar 7, 2019 at 4:43 PM Eric Olson  > wrote:
> I've had problems with sores on my scrotum before.  Now everyday I have the 
> nurses make sure I'm not sitting on my sack when they put me in the chair.  
> I've abbreviated it to "my goods good?"  I tilt back and have them hold my 
> balls till I'm upright.  Using a lift to get in the chair is the culprit
> 
> On Thu, Mar 7, 2019 at 1:45 PM Ben Mattlin  > wrote:
> I know this subject has come up before, but now I need help: I've got bad 
> pressure sores on my scrotum/perineum.
> 
> I just got a new power chair.  I love it.  But it seems that the improved 
> posture it gives me is putting more weight in front.  After about a month, my 
> balls are bleeding (to be frank).
> 
> I've added and let air out of the Roho.  I've tried tilting back, but that 
> puts pressure on an old ongoing wound on my lower back/sacrum/coccyx area.  
> My doctors have ruled out fungus or other infection.  It's pressure.
> 
> So for now, I'm back in my old chair and spending more time in bed.  My 
> wheelchair tech at National Seating & Mobility has been unhelpful.  I have a 
> message in to a physical therapist for an eval.
> 
> But in the meantime, do any of you have any suggestions?  Perhaps a 
> hemorrhoid pillow, but that could cause stability problems.  Perhaps some 
> kind of jockstrap?  I don't know, but I'm sure pissed.
> 
> Thank you for reading and for any suggestions you have.
> 
> -Ben

Re: [QUAD-L] Oldest living Quads

[Billy Lang]

I will be 70 in May, 30 years post in July. Just got a real good reason to hang 
around. 

> On Dec 26, 2018, at 4:48 PM, Jim Lubin  wrote:
> 
> Some of the quads in this group are the longest living that I have seen. 
> Maybe it's the good company. 😀
> 
> Merry Christmas
> 
> On Wed, Dec 26, 2018 at 1:15 PM Bobbie Humphreys  > wrote:
> Depends on a lot of factors 
> I ca feel myself dying, I'm at 46 years 
> 
> Merry Christmas 🎄 
> Bobbie 
> 
> On Dec 26, 2018, at 1:48 PM, Shirley Bell  > wrote:
> 
>> Hi Guys, Merry Christmas!! kinda late. My family has me dead and buried 
>> before long!  Made me mad. I am 59 been a quad 41 yrs. Are there any stats 
>> on life expectancy of us? thanks

Re: [QUAD-L] Strange Question

[Billy Lang]

Three times. Once when I had  The injury I drowned, dead for about 12 minutes. 
Second time anesthesiologist put me in cardiac arrest prior to spinal fusion. 
Last month I went into a coma my stats were 40 oxygen. Three days with hospice 
standing by and 60 people in my bedroom (I have a big family) saying goodbye. 
My daughter put on a favorite song (Spirit in the sky) and my eyes opened and I 
asked, “what the hell are you all doing here?”

Guaranteed I will not have that many when I do pass.

> On Dec 20, 2018, at 8:31 PM, Bobbie Humphreys  
> wrote:
> 
> For me it was double pneumonia after surgery.
> Bobbie 
> 
> On Dec 20, 2018, at 8:13 PM, Greg mailto:g...@eskimo.com>> 
> wrote:
> 
>> Since your injury, how many times, because of your injury, have you come 
>> close to passing?
>> 
>> Me, 3 Times...
>> 
>> OD, medication interaction.
>> 
>> Almost fell in Pool when no one was around, seatbelt on. (I no longer use a 
>> seatbelt, only chest strap if I go out by myself. Actually a few close calls.
>> 
>> Choking, eating bread, it got stuck very bad. Could not breath. Semi 
>> heimlich got it out.
>> 
>> Greg

[QUAD-L] cruise to Canada

[Billy Lang]

Hi guys,

I booked a cruise from Bayonne New Jersey to Halifax. It stops in Portland 
Maine, Bar Harbor where I can’t visit because the ship is tendered, (to get to 
shore one must go by boat which is not accessible.), St. John and Halifax. I 
have cruised before most times to Bermuda, but I was wondering if any of you 
guys have gone on this trip. I am looking at excursions and it looks like I 
will have to dig deeper to find something else to do or see while we are in 
these ports. 

BTW Has anyone had any good experience with DPI for Mac? (Dictate for Mac) 
Version 6.08?
I have been battling with Nuance for over a year trying to get a stable 
product. The only thing that seems to work is by going to DragonPad and doing 
all the dictation there then moving it. I am authoring a book and the use of 
this product is horrendous. It has forced me back to Windows 10 on an old 
laptop with NaturallySpeaking version 13.5.


Don’t  let what you cannot do interfere with what you can do! -John Wooden
   
   Billy Lang
  blan...@icloud.com

Re: [QUAD-L] Heart Issue. Long Time Quad

[Billy Lang]

I have Afib, but it's not from being a quad. I am 28 years post. it is a 
congenital disease. My father and 3 of his five brothers have it. I am the 
oldest of eight brothers, when I was diagnosed and told it was congenital, six 
underwent diagnostics and received stents.

> On Mar 14, 2018, at 8:27 PM, Eric Olson  wrote:
> 
> Turns out I don't have one (a heart that is)
> 
> On 3/14/2018 6:09 PM, Greg wrote:
>> Any of you long time quads have heart issues?
>> Did an EKG, They said I need to see a Cardiologist.
>> They said might be a murmur, might be a little fluid around the heart, from 
>> lack of mobility.
>> 
>> Greg
> 
> 
> 
>      
> This email has been checked for viruses by Avast antivirus software. 
> www.avast.com 
>  

[QUAD-L] Re: [QUAD-L] Problems with Dragon NaturallySpeaking 13… I just had to reinstall 12.5

[Billy Lang]

Guys,

I’m a little late answering this post because I was hospitalized for a while. 
I’m better now so here goes:
Nuance as the company has turned the corner from being the premier voice 
software to becoming a mega marketing platform. None of the speech products are 
up to production code. Personally I am using voice for Mac professional and 
over the last 6 months I’ve had at least 700 crashes. He version 5 of the 
program was so bad • that they had pull it back from production. That did not 
mean giving everyone their money back and just put out a version 6 and charge 
everyone $249 for an upgrade. That upgrade was unintelligible until version 
6.02, which only crashed every 30 minutes.

It wasn’t merely time-consuming going from release to release but it meant 
training and retraining every version that came out. I am currently running 
6.07 and it does not crash as much as long as I do not have too many things on 
the screen at the same time. It seems that Dragon must keep its eye on every 
button, link or words in its memory in order to navigate properly.

You are not the only one who has mistakingly upgraded their equipment due to 
Nuance malfeasance. Their user forum, once a place to solve problems or share 
experiences just mysteriously closed down when user population use the forum 
for nothing but suing Nuance for false advertising and loss hours of production.

This was not the only people who are buying $300-$400 one time boxes. The 
lawyers and doctors who pay thousands of dollars to build the practices upon 
which recognition of also lost out.

The competition is starting to squeeze Nuance out on the voice recognition 
arena.  Programs like Siri and Alexa are already composing messages small emails
> On Nov 2, 2017, at 11:42 AM, DEBRA DEW  wrote:
> 
> I bought the fastest Dell computer I could about six months ago to be able to 
> run Dragon naturally speaking 13 optimally, and at least once a month it was 
> crashing so badly I had to have a computer guy come fix it will.  Aside from 
> the fact that I could've bought another computer for the money I spent on 
> repairs, I finally got the brilliant idea after reinstalling Windows and 
> everything else repeatedly that that was not the problem and I suspected 
> something was wrong with the Dragon 13 program.  So although they had my 
> computer for over a week, I finally got it back last week with 12.5 
> reinstalled and so far no crashes.  The only difference I can tell in the two 
> programs is that with Dragon 13 trading the profile was not required, but 
> that only took me a few minutes anyway so that's really not an issue to me.  
> I never had recognition issues with either program unless the profile was 
> becoming corrupted and then all I did was make a new profile.  Not a big deal.
> 
> I just wanted to share this with you guys in case you were not aware of it.  
> Obviously Dragon has a monopoly and they do not care about their customers 
> satisfaction any longer.  It would've been very graciously polite they would 
> share the news about their newest release not being so hot, and saved us a 
> lot of difficulties figuring out what was going on.
> 
> http://www.knowbrainer.com/forums/forum/messageview.cfm?FTVAR_FORUMVIEWTMP=Linear&catid=4&threadid=23784&discTab=true
>  
> 
>  
> 
> Debra Scruggs-Scruggs phalanx-dragon slayers -PRISONER OF HOPE ZECH. 9
> Formerly: Homeschooling mom of 9 and pvt. pilot
> Currently: Quadrapeligic due to advanced MS and living in a nursing home
> Phone: 561-588-4333
> SC student 20yrs  
> ROMANS 8:28
> B.I.B.L.E.-BASIC INSTRUCTIONS BEFORE LEAVING EARTH 

[QUAD-L] Re: [QUAD-L] Problems with Dragon NaturallySpeaking 13… I just had to reinstall 12.5

[Billy Lang]

Guys,

I’m a little late answering this post because I was hospitalized for a while. 
I’m better now so here goes:
Nuance as the company has turned the corner from being the premier voice 
software to becoming a mega marketing platform. None of the speech products are 
up to production code. Personally I am using voice for Mac professional and 
over the last 6 months I’ve had at least 700 crashes. He version 5 of the 
program was so bad • that they had pull it back from production. That did not 
mean giving everyone their money back and just put out a version 6 and charge 
everyone $249 for an upgrade. That upgrade was unintelligible until version 
6.02, which only crashed every 30 minutes.

It wasn’t merely time-consuming going from release to release but it meant 
training and retraining every version that came out. I am currently running 
6.07 and it does not crash as much as long as I do not have too many things on 
the screen at the same time. It seems that Dragon must keep its eye on every 
button, link or words in its memory in order to navigate properly.

You are not the only one who has mistakingly upgraded their equipment due to 
Nuance malfeasance. Their user forum, once a place to solve problems or share 
experiences just mysteriously closed down when user population use the forum 
for nothing but suing Nuance for false advertising and loss hours of production.

This was not the only people who are buying $300-$400 one time boxes. The 
lawyers and doctors who pay thousands of dollars to build the practices upon 
which recognition of also lost out.

The competition is starting to squeeze Nuance out on the voice recognition 
arena.  Programs like Siri and Alexa are already composing messages small 
emails. Ready for prime time voice recognition for the desktop is almost here. 
Patients and don’t buy any more hardware if you suspect it will make Nuance any 
better.


 Billy
> On Nov 2, 2017, at 11:42 AM, DEBRA DEW  wrote:
> 
> I bought the fastest Dell computer I could about six months ago to be able to 
> run Dragon naturally speaking 13 optimally, and at least once a month it was 
> crashing so badly I had to have a computer guy come fix it will.  Aside from 
> the fact that I could've bought another computer for the money I spent on 
> repairs, I finally got the brilliant idea after reinstalling Windows and 
> everything else repeatedly that that was not the problem and I suspected 
> something was wrong with the Dragon 13 program.  So although they had my 
> computer for over a week, I finally got it back last week with 12.5 
> reinstalled and so far no crashes.  The only difference I can tell in the two 
> programs is that with Dragon 13 trading the profile was not required, but 
> that only took me a few minutes anyway so that's really not an issue to me.  
> I never had recognition issues with either program unless the profile was 
> becoming corrupted and then all I did was make a new profile.  Not a big deal.
> 
> I just wanted to share this with you guys in case you were not aware of it.  
> Obviously Dragon has a monopoly and they do not care about their customers 
> satisfaction any longer.  It would've been very graciously polite they would 
> share the news about their newest release not being so hot, and saved us a 
> lot of difficulties figuring out what was going on.
> 
> http://www.knowbrainer.com/forums/forum/messageview.cfm?FTVAR_FORUMVIEWTMP=Linear&catid=4&threadid=23784&discTab=true
>  
> <http://www.knowbrainer.com/forums/forum/messageview.cfm?FTVAR_FORUMVIEWTMP=Linear&catid=4&threadid=23784&discTab=true>
>  
> 
> Debra Scruggs-Scruggs phalanx-dragon slayers -PRISONER OF HOPE ZECH. 9
> Formerly: Homeschooling mom of 9 and pvt. pilot
> Currently: Quadrapeligic due to advanced MS and living in a nursing home
> Phone: 561-588-4333
> SC student 20yrs  
> ROMANS 8:28
> B.I.B.L.E.-BASIC INSTRUCTIONS BEFORE LEAVING EARTH 

Re: [QUAD-L] Marijuana

[Billy Verizon]

I use it occasionally. I get only high quality unadulterated weed. You can find 
a good source (home grown is best). It helps with pain and definitely stops any 
spasticity cold.

Because most of us have compromised pulminary breathing problems, it is hard to 
get it into our bodies via smoke. Eating it, for me, is problematic because it 
takes too long to get into the bloodstream. I use an aroma therapy machine that 
cooks the weed at very high temp to extract the THC into a mist. Three hits and 
I am fine. Any more I can get paranoid.


Sent from my iPad

> On Jan 5, 2015, at 22:19, diannal...@aol.com wrote:
> 
> I saw it but I can't remember which state she was from. I'd love to try it if 
> I could get it like that because I don't like the way it makes me feel.. 
> Someone said they couldn't get their doctor to sign off on it.  Most people 
> can get it for anything. My sister gets it for carpal tunnel (sp??) She still 
> has to pay out of pocket though. In CA.
> Dianna
> Someone told me they saw just a small part of a TV show about a marijuana 
> hybrid that is supposed to be good for pain, spasms, etc, but not get you 
> high. It was about an 8 year old girl (or something like that), that had very 
> bad seizures. But they did not want to have her get high from eating or 
> smoking regular marijuana.
> Anyone see this?
> 
> 
> 
> -Original Message-
> From: Ed Tessier 
> To:  
> Cc: greg ;  
> Sent: Mon, Jan 5, 2015 1:16 am
> Subject: Re: [QUAD-L] Marijuana
> 
>  how many of us  marijuana regularly for therapeutic uses? What condition are 
> you treating?
> 
> One of my doctors has regularly raised the  possibility of my using marijuana 
> for pain related to kidney stones.
> 
>> On Sun, Jan 4, 2015 at 5:18 PM,  wrote: 
>> I did.  Its an extract of MJ.   In syrup form.
>> Best Wishes
>>  
>> In a message dated 1/4/2015 5:39:41 P.M. Central Standard Time, 
>> g...@eskimo.com writes:
>> Someone told me they saw just a small part of a TV show about a marijuana 
>> hybrid that is supposed to be good for pain, spasms, etc, but not get you 
>> high. It was about an 8 year old girl (or something like that), that had 
>> very bad seizures. But they did not want to have her get high from eating or 
>> smoking regular marijuana.
>> Anyone see this?
>> 
>> Greg
> 

Re: [QUAD-L] scalp itch

[Billy Lang]

Tgel shampoo takes the flakes away.

Sent from Billy's IPAD2

> On Nov 26, 2014, at 7:02 PM, wheelch...@aol.com wrote:
> 
> Pine Tar Soap at night and baby oil during the day.
> Best Wishes
>  
> In a message dated 11/26/2014 3:13:49 P.M. Central Standard Time, 
> r.pra...@sbcglobal.net writes:
> My head is itching like crazy. Im going to try the selsun blue I guess. 
> Anybody know anything better to put on there that's fairly simple? Must be 
> because of the cold weather and I wear a sock hat all the time.
> 
> Ron

Re: [QUAD-L] Electric chair maintenance???

[Billy]

Your scowling needs to be adjusted. Mine did the same thing. You can tweak the 
seat riser to relieve the pressure. If the creaking goes away when you rise up, 
that's the cause.

Sent from my iPad

> On Nov 11, 2014, at 21:02, Shelly Kerchner  wrote:
> 
> 
> 
> Hello to all,
> My chair is making annoying "creeks" and it's from the back. It's 3 years old 
> and the tires have been replaced.
> May it be my suspension??? It's working on my partners nerves,
> Is there something I could do before I call my medical supply store?
> 
> Thank you
> 
> Shelly
> 
> Sent from Yahoo Mail for iPad

Re: [QUAD-L] Question

[Billy Yahoo]

Guys,

I'm retired (65) this year. Since I left work in 2000 on disability at 70% tax 
free pay. My Insurance was paid with after tax dollars which made the payments 
to me tax free. So, if my pay was $100,000 I receive $70,000 tax free, for 
example.

You can take any 401k money without penalty as long as you file as disabled. 
You will still be subjected to regular tax on the money as income. Your Soc. 
Sec. Also is taxed as income if it falls beyond the threshold for the tax year.
You are disabled automatically if you are receiving SSD. You can save into a 
401K anytime. By gov't do you mean state? Do they want money back from you from 
an award or settlement from a lawsuit? That they can and will do.

I received a settlement from a suit brought against property owners of the pier 
I got hurt on. At that  time I worked for Chase Manhattan bank. It took five 
years to bring the suit to fruition. I used $250k in medical expenses from 
insurance. The bank was self insured for their employees ergo it was my 
employer who wanted the $250k back. I argued that they were not part of the 
suit, had no steak in arguing the suit nor any downside if I had lost in court. 
Nope, by law they were entitled to that money back. Now, through arduous debate 
back and forth ( they knocked it down to $100k) 



Sent from my iPad

> On Oct 24, 2014, at 19:23, ntpgrn...@aol.com wrote:
> 
> Anyone have luck saving in a 401k without the government declaring it an 
> assist. For services/care. Although not accessible until a certain age.
> Please advise...
> 
> 
> Nancy Pritchard 
> 802-355-3449
> Pall Spera Company Realtors, LLC
> PO Box 507
> Morrisville, Vermont 05661
> nancy.pritch...@pallspera.com
> 
> 
> 
>> On Oct 24, 2014, at 7:19 PM, Larry Willis  wrote:
>> 
>> Yes, but I am not classified as disabled as long as I qualify for regular 
>> retirement. Crazy, I know, but true.
>> 
>> Sent from my iPad
>> 
>> Begin forwarded message:
>> 
>>> Resent-From: quad-list@eskimo.com
>>> From: jume9...@comcast.net
>>> Date: October 24, 2014 at 6:35:43 PM EDT
>>> To: Larry Willis , quad-list 
>>> Subject: Re: [QUAD-L] Question
>>> 
>>> You qualify for Medicare no matter your age if you are disabled.
>>> 
>>> Meredith
>>> 
>>> From: "Larry Willis" 
>>> To: "quad-list" 
>>> Sent: Friday, October 24, 2014 3:29:03 PM
>>> Subject: [QUAD-L] Question
>>> 
>>> I have a serious insurance question for you guys. I have private health 
>>> insurance through the Kentucky Retired Teachers Assoc. I just learned that 
>>> it will pay only 70% for 2015. That leaves a whopping 30% to come from me. 
>>> Is it possible or even worthwhile to get a supplemental policy to cover the 
>>> 30%? Or do those only apply to Medicare? At age 65 I will switch to 
>>> Medicare automatically. I am 62 now. My peeps got any wisdom on this?
>>> 

Re: [QUAD-L] sure is quite

[Billy Yahoo]

If u r asking, there might be a problem.

Sent from my iPad

> On Oct 21, 2014, at 13:10, Jim Lubin  wrote:
> 
> did everyone get removed?

Re: [QUAD-L] sure is quite

[Billy Yahoo]

Hope not Jim

Sent from my iPad billy Lang

> On Oct 21, 2014, at 13:10, Jim Lubin  wrote:
> 
> did everyone get removed?

[QUAD-L] Is anyone using a IMac?

[Billy Lang]

 

I have been a Windows user, both desktop and laptop, all my life. I am
giving up on Microsoft due to the multitude of problems with the software
and their interactions. Can anybody with experience with iMac using Dragon
Dictate share it with me? I'm thinking of a 27 inch iMac with retinal
display with a fusion drive probably one TB. I'm concerned about navigating
through the desktop using DragonDictate. Does it have the same functionality
as Windows IE totally hands-free?

 

My current system has a 250 GB SSD buttressing a one TB mechanical drive,
Windows 7 and Dragon naturally speaking version 13.

 

Thanks for sharing.

 

Don't let what you cannot do interfere with what you can do!

 

Billy

 

Re: [QUAD-L] Why I Think This World Should End

[Billy Yahoo]

1. My knowledge of Muslim or Islam is not up to debate on this Quad List.
2. If u have something of substance to contribute to this list, or a problem u 
need help with re: This lists's subjects or participants, Post it. 

Sorry, tho, this is my last missive to you, SO JUST SHUT UP AND DIE.

Billy Lang
C5/6 Tetraplegic
25 Years Post Injury

 





Sent from my iPad

> On Oct 1, 2014, at 14:46, HOSNI AL-KHATIB  wrote:
> 
> you don't know anything about ISLAM and Muslims,but I will give some 
> informations
> 
> When muslims do good things : It's humanity,But When muslims do bad things : 
> its islam. (so stop double standard hypocrisy)
> 
> 
> 
> 
> I'm a Muslim, Islam is perfect but I am not. If muslims makes some mistakes, 
> blame it on them, not on our religion
> 
>  to see some of your double standard see this  
> http://hkbraveheart.blogspot.com/2011/07/muslims-in-world-double-standard.html
> 
> about 9/11 if you still believe the lies that your government told you,just 
> go to youtube and see thousands of videos about the truth ,and what hillary 
> clinton said about al-Qaeda  http://www.youtube.com/watch?v=Dqn0bm4E9yw
> 
> and that's the answer of some questions you may have in your mind,
> 
> If you need more information,Just ask
> 
>  Does Islam Permit Killing Civilians?
> 
> Even in times of war, the Muslim must respect his adversaries� humanity. 
> Brutal and barbaric atrocities are prohibited in Islam. Islam condemns 
> barbaric killing of any human being. Therefore, Islam does not permit the 
> mutilation of the bodies of the dead enemy soldiers.
> 
> Also, Islam prohibits the targeting and killing of all civilians, especially 
> women, children, the elderly, and religious clergy. Enemies, even at time of 
> war, must be treated justly. Prisoners of war have basic human rights, as 
> stated in the Shariah (Islamic Law), and must be provided and cared for and 
> not humiliated in any way.
> 
> The following verses touch on some of these issues:
> 
> "O Prophet! say to those who are captives in your hands: If Allah findeth any 
> good in your hearts, He will give you something better than what has been 
> taken from you, and He will forgive you: for Allah is Oft-Forgiving, Most 
> Merciful." (Surah 8, Verse 70).
> 
> And they feed, for the love of Allah, the indigent, the orphan, and the 
> captive, (Saying), We feed you for the sake of Allah alone: no reward do we 
> desire from you, nor thanks." (Surah 76, Verses 8-9).
> 
>  In addition, the following were the instructions of Prophet Mohammad (pbuh) 
> to Muslims who are forced to fight a war:
> 
> "Do not kill women or children or non-combatants and do not kill old people 
> or religious people,'' and he mentioned priests, nuns and rabbis. And he 
> said, "Do not cut down fruit-bearing trees and do not poison the wells of 
> your enemies." There are many more sayings and teachings of Prophet Mohammad 
> that instruct Muslims on these issues.
> 
> In addition to all this, Islam prohibits oppression, revenge or injustice to 
> the people of the enemy in case of victory against them. Nor must there be 
> control over the sources of the wealth of the nation or people, or even 
> establishment of colonial regimes. Justice and freedom must be established. 
> Tolerance towards cultures and peoples is to be respected at all times.
> Islamic Principle: There is no Compulsion in Religion
> The verse from the Qur'an which states this principle of no compulsion in 
> religion is the following:
> "Let there be no compulsion in religion: Truth stands out clear from Error: 
> whoever rejects Evil and believes in Allah hath grasped the most trustworthy 
> hand-hold, that never breaks. And Allah heareth and knoweth all things." 
> (Surah 2, Verse 256). The holy Qur'an reminds us that there must not be 
> compulsion in religion. It states that the truth stands out clear from error, 
> and that those who reject error and believe in God are the saved ones.
> This means that Muslims are not allowed to force people to convert to Islam. 
> Muslims should only seek to make the truth clear to others, and talk to them 
> about Islam, then let them decide for themselves. In fact, most people who 
> study Islam without having made a decision to hate it first come to love its 
> message and convert to Islam after learning about it's values and principles.
> Another verse that also states this principle is the following:
> "If one amongst the Pagans ask thee for asylum, grant it to him, so that he 
> may hear the word of Allah; and then escort him to where he can be secure. 
> That is because they are men without knowledge." (Surah

Re: [QUAD-L] Why I Think This World Should End

[Billy Yahoo]

 If he creeps u out, block him. Personally, Muslim fundamentalist diatribe is 
abhorrent. They rant  about loving their God yet condemn to death all who do 
not practice it their way. It justifies  rape, genocide and murder. 
My son and sister were murdered by people who follow these beliefs on 9/11.  He 
lives in a country that does not give him the right to be anything but what he 
is. He has no rights here and should not be given any. Ignore his rantings. 
Jimmy has the power to ban him. It's his list and his right. I love this list 
where people like us and those who support us can go to get valued info on 
anything pertaining to their problems. The info is timely and given freely by 
those with experience. 


Billy Lang

Sent from my iPad

> On Sep 29, 2014, at 20:57, Lori Taylor  wrote:
> 
> Does Jim not read these emails?  Do you know his email address?
> 
> 
> On Monday, September 29, 2014 7:40 PM, "wheelch...@aol.com" 
>  wrote:
> 
> 
> please people of earth.  send a private email to our host for his perusal.  I 
> can't speak for Jim but I don't think he would tolerate any form of threats, 
> discrimination and those speaking or advocating that which was mentioned.  
> But please, email Jim Lubin.
>  
> Best Wishes
>  
> In a message dated 9/29/2014 7:29:27 P.M. Central Daylight Time, 
> llt1...@sbcglobal.net writes:
>  I am in support of Don's concerns.  I, personally, have never seen any quad 
> related posts by this person. 
> 
> I have looked at his blog-site.  And, to be honest, my gut gets that "creep 
> factor" feeling.  One video talks about recruiting children for jihad.  I 
> couldn't bring myself to watch it.
> 
> Just my 2 cents
> 
> 
> On Monday, September 29, 2014 7:16 PM, "wheelch...@aol.com" 
>  wrote:
> 
> 
> I truly hope you don't un-subscribe.  Your knowledge and opinions are worth 
> itHonestly, I haven't taken the time to read his website or blogs.  I 
> don't have the time.  If he is indeed, as you say... I would report it to Jim 
> Lubin as this is HIS group and we are all members.  If what you say is true, 
> then I don't have to read any of his further postings but I can't remove 
> him.  Again, Its Jim's Site.   Send him a lil note.
>  
> Best Wishes
>  
> In a message dated 9/29/2014 7:01:20 P.M. Central Daylight Time, 
> donpric...@yahoo.com writes:
> With all due respect, if you haven't looked at Hosni's blog, other than 
> today, you really should before writing it off or just saying "hit the delete 
> button." Go ahead... take a look at his blog if you think it's innocent!
> http://hkbraveheart.blogspot.com/2014_08_01_archive.html
> 
> Most of his blog entries are written in Arabic, so you won't be able to read 
> them, but there's absolutely no mistaking that Hosni is antisemitic. Also, 
> you can learn all you want about ISIS and the caliphate on his blog.
> 
> AGAIN, I SAY it's fine for HOSNI to have his opinion and his blog. But the 
> QUAD-list is NOT the proper forum for his venomous propaganda (and I'm not 
> even Jewish.)
> 
> Some of you say "just ignore or hit the delete button." That is not the 
> point. I am totally fine with political discussions and controversial topics, 
> and have NO trouble finding the delete button. However, his blogs are NOT 
> related to quads in any way, and furthermore they're NOT discussions. He 
> sends us his propaganda and then disappears. I've written to Hosni directly, 
> but he never replies. 
> 
> "What harm can come from his posts?", you ask? Well, again, I say look at his 
> blog and tell me if you are OK being associated with his rhetoric. I am not, 
> and if it doesn't stop I'll be unsubscribing.
> 
> Lastly, here's what I wrote way back in March:
> 
> Sorry, but this isn't the forum for this type of 'blog.'
> I'm not the moderator of this list, but I request these blog emails be 
> stopped.
> 
> Thank you,
> Don.
> 
> 
> 
> On Saturday, March 1, 2014 8:06 AM, HOSNI AL-KHATIB 
>  wrote:
> 
> 
> 
> HOSNI AL-KHATIB has sent you a link to a blog: 
> 
> How would British, American, Chinese And Israeli React To "Fly" In Their Cup 
> Of Coffee ? 
> 
> Blog: BRAVEHEART 
> Post: How would British, American, Chinese And Israeli React To "Fly" In 
> Their Cup Of Coffee ? 
> Link: 
> http://hkbraveheart.blogspot.com/2014/03/how-would-british-american-chinese-and.html
> 
> --
> 
> 
> On Monday, September 29, 2014 11:11 AM, "wheelch...@aol.com" 
>  wrote:
> 
> 
> 
> Hi Don,  Some of those postin

Re: Fwd: [QUAD-L] I just O.D. this weekend

[Billy Lang]

Just saw this conversation and thought I'd reply. Baclofen is for spazms and 
the dosages are dependent on the amount u need to live and function. i take 
30mg 4 x daily. i tried to cut down but I had problems even going to 
30-20-30-20.
I started getting weird and had to go back to the original dosages. DO NOT STOP 
COLD! yOU WILL HALLUCINATE AND WORSE.

I am currently on Oxy (30 mg every 3 hours) and Fentyl patches (250 mcg). I 
once OD'd on patches when the patches got applied and the old ones were left 
on. My pain was off the charts, and I labored breathing. 24 hours until my 
nurse saw the problem.
Go figure, again not my time.

Don't let what you cannot do interfere with what you can do!
 
Billy Lang 




On Wednesday, September 3, 2014 6:48 PM, Derrick  
wrote:
 


I TAKE BOTH AND NEVER HAD AN ISSUE. 80 MG BACLOFEN, 20 MG OXYCONTIN, & 10 MG 
OXYCODONE PER DAY

On 9/2/2014 7:29 PM, Larry Willis wrote:

Oh my, I took baclofen with oxy a few years ago. My experience wasn't as bad as 
yours, but I was completely out of it for a day. That was my last baclofen. 
Never again, that's for sure.

Sent from my iPad

Begin forwarded message:


Resent-From: quad-list@eskimo.com
>From: 
>Date: September 2, 2014 at 5:58:41 PM EDT
>To: quad-list@eskimo.com
>Subject: [QUAD-L] I just O.D. this weekend
>
>
I O.D. this weekend. I’ve been taking pain meds for years (MS-Contin), but I’ve 
been having bad spasms lately so I got some Baclofen. It was fine at first, but 
the 4th time I took it everything went bad. I took one in the morning when I 
got up at about 6am and 2 hours later I started crashing into things, got 
argumentative with people, then feel asleep. After that no one could wake me 
up. The Aid Car guys tried that smelling stuff, but still no. So they had to 
give me Narcan. Narcan totally reverses the effects of narcotics.
>
>I woke up for a time, but was totally out of it. I was flailing my arms 
>swearing none stop. I only remember a few things from Fri night to Sat 4:30pm. 
>The Aid guys asking me who I am right after they got me awake, and going nuts 
>demanding they take my shirt off. They cut it off, but I kept saying it. Then 
>I woke up in the ER at 4:30pm. I felt a bit loopy until Sun night. Just 
>slightly confused.
>
>Anyone else take MS-Con or Oxy plus Baclofen? Not a good combo.
>
>Greg W
>
>
>

RE: [QUAD-L] Help for feet swelling?

[Billy Lang]

Ron,

 

An excellent video by a doctor:

 

http://www.ehow.com/video_7463463_reduce-swelling-feet.html

 

 

If you don't have any changes in your routines, look toward your sodium
intake.

 

From: RONALD L PRACHT [mailto:r.pra...@sbcglobal.net] 
Sent: Thursday, May 22, 2014 4:59 PM
To: quad-list@eskimo.com
Subject: [QUAD-L] Help for feet swelling?

 

hey guys,

 

My feet are swelling to a point its hard to get my shoes on. Without
passive motion, are their any other alternatives to help the problem?

 

 

Ron

[QUAD-L] Trackball replacement

[Billy Lang]

 

Guys,

 

I am upgrading my desktop, an HP Pavilion Elite with windows 7. It seems
that every 3 years the combination of Windows and or the hardware goes belly
up. I thought I could extend the PCs life by installing and SSD drive to
replace/augment the 1 TB hard drive that came with this system. For 4 months
this desktop ran faster and by faster I mean complete boot and Windows
startup under 30 seconds. Dragon NaturallySpeaking the 12.5 and the rest of
the programs were amazingly fast.

 

Alas, either a virus attacked or the SSD hardware failed. Anyway, I believe
an all-in-one PC with Windows 8 might be my next choice. My problem is
finding a replacement for my Kensington 4 button trackball. Through trial
and error I was able to use the device by installing a driver that was used
in XP. I don't believe they'll be a driver for the device in Windows 8.

 

Questions:

 

Anyone running Windows 8 and if so what device are you using for a mouse?

Anyone using a mouse touchpad?

 

Thank you

 

Don't let what you cannot do interfere with what you can do!

 

Billy

 

FW: [QUAD-L] Inflammed testicles

[Billy Lang]

 

 

From: Billy Lang [mailto:blan...@verizon.net] 
Sent: Saturday, December 14, 2013 3:02 PM
To: 'ntpgrn...@aol.com'
Subject: RE: [QUAD-L] Inflammed testicles

 

I have this too. My redness extends back from my testicles to my anus. We
(my nurses and I)are starting with a process of elimination.

 

1. I have been putting a product called Askafor on some scrapes I have on my
butt due to transfers. I'm stopping that.

2. I am doing more pressure relief. I know my backside gets red after a
bowel program. This is due to trying to pushing out stool. Having a number
of programs in a row and pushing down while on my commode chair could be the
cause.

3. I had 6 teeth removed recently. My diet has changed to soft foods while
my gums heal. I know I'm not getting enough protein. So I'll start on
protein shakes immediately.

 

You may want to look at the side of facts of what ever antibiotic you are
using.

 

BTW: I am assuming that you are a caregiver and not a guy named Nancy with
testicles.

 

Bill Lang

 

From: ntpgrn...@aol.com <mailto:ntpgrn...@aol.com>
[mailto:ntpgrn...@aol.com] 
Sent: Saturday, December 14, 2013 5:36 AM
To: quad-list@eskimo.com <mailto:quad-list@eskimo.com> 
Subject: [QUAD-L] Inflammed testicles

 

As a result of uti and frequent bowel accidents we battling very red and raw
testicles and inner thigh. Looking for some wisdom.

Nancy 

FW: [QUAD-L] Quad taken off vent dies

[Billy Lang]

link

http://ipad.aol.com/article/2013/11/06/tim-bowers-32-year-old-outdoorsman-ch
ooses-to-end-li/20762381/?a_dgi&a_dgi=aolshare_facebook


-Original Message-
From: Billy Lang [mailto:blan...@verizon.net] 
Sent: Thursday, November 07, 2013 11:56 AM
To: 'da...@immortaldesigns.co'; 'Gmail'; 'quad-list@eskimo.com'
Subject: RE: [QUAD-L] Quad taken off vent dies

Was his consent to die his real intent? Was he cogent enough to form a
rational thought? How many drugs were in his system at the time he was
asked? Having lived a productive life as a paralyzed quadriplegic for the
last 24 years I certainly can understand the emotional legitimacy of the
actions, and what his loved ones went through to make such a final decision.
However, there will always be the question of "did I do the right thing?" I
implore everyone to have a Living Will. With one all of the above is removed
from the equation. RIP Tim.

-Original Message-
From: Danny Espinoza [mailto:da...@immortaldesigns.co] 
Sent: Thursday, November 07, 2013 5:21 AM
To: 'Gmail'; quad-list@eskimo.com
Subject: RE: [QUAD-L] Quad taken off vent dies

Send me that...

-Original Message-
From: Gmail [mailto:bobbiehumphre...@gmail.com]
Sent: Wednesday, November 06, 2013 5:53 PM
To: 
Subject: [QUAD-L] Quad taken off vent dies

Did anybody read an article I read today in AOL news about a Quad taken off
a vent and died 6 hours later?
Tim, 32, fell 16' out of a tree crushing C-3,4,5 while hunting in Decatur,
Indiana Sat. Nov.2nd Then on Sun. Nov.3rd his Family and doctors asked him
if he wanted to be taken off the ventilator and die. He said yes and with in
six hours he died.
He had just gotten married August 3, 2013 and was expecting a baby.
He had told his wife that "... I never want to have my life in a
wheelchair."
What I can't be leave is how quickly the decision was made and carried out,
24 hours after his accident they pulled the plug on the ventilator.
If anybody wants me to send them the article I read, just email me and I
will send to you. I tried to send it to the Quad list but it wasn't
expected.   Bobbie 

RE: [QUAD-L] Quad taken off vent dies

[Billy Lang]

Was his consent to die his real intent? Was he cogent enough to form a
rational thought? How many drugs were in his system at the time he was
asked? Having lived a productive life as a paralyzed quadriplegic for the
last 24 years I certainly can understand the emotional legitimacy of the
actions, and what his loved ones went through to make such a final decision.
However, there will always be the question of "did I do the right thing?" I
implore everyone to have a Living Will. With one all of the above is removed
from the equation. RIP Tim.

-Original Message-
From: Danny Espinoza [mailto:da...@immortaldesigns.co] 
Sent: Thursday, November 07, 2013 5:21 AM
To: 'Gmail'; quad-list@eskimo.com
Subject: RE: [QUAD-L] Quad taken off vent dies

Send me that...

-Original Message-
From: Gmail [mailto:bobbiehumphre...@gmail.com]
Sent: Wednesday, November 06, 2013 5:53 PM
To: 
Subject: [QUAD-L] Quad taken off vent dies

Did anybody read an article I read today in AOL news about a Quad taken off
a vent and died 6 hours later?
Tim, 32, fell 16' out of a tree crushing C-3,4,5 while hunting in Decatur,
Indiana Sat. Nov.2nd Then on Sun. Nov.3rd his Family and doctors asked him
if he wanted to be taken off the ventilator and die. He said yes and with in
six hours he died.
He had just gotten married August 3, 2013 and was expecting a baby.
He had told his wife that "... I never want to have my life in a
wheelchair."
What I can't be leave is how quickly the decision was made and carried out,
24 hours after his accident they pulled the plug on the ventilator.
If anybody wants me to send them the article I read, just email me and I
will send to you. I tried to send it to the Quad list but it wasn't
expected.   Bobbie 

Re: [QUAD-L] Suprapubic Catheter

[Billy Lang]

Naomi,
Have a Suprapubic for 24 years. Had others ask advice and I tell them it works 
great 4 me. For a male the Suprapubic also "Free's Willy". I believe it would 
also "Free Lilly", for a female.

BTW If u get it, be diligent about cleansing, twice daily. Lessens UTI 
occurances.

Sounds like a wait won't change anything positive. Second opinions are good.

Sent from Billy Lang's iPad


> On Nov 2, 2013, at 13:00, "nichole rohling"  wrote:
> 
> I’ve had an indwelling cath (16 french) for over 15 years……..just moved up to 
> a 18 from a 16 because of it stopping up and some leakage (minimal). I say 
> wait and get a 2nd opinion.
>  
> Nicki
> c5/6
>  
> From: Naomi Hudson [mailto:ladyno...@aol.com] 
> Sent: Friday, November 01, 2013 9:47 PM
> To: quad-list@eskimo.com
> Subject: [QUAD-L] Suprapubic Catheter
>  
> Help I need  your advice,
>  
>  
> I have had an indwelling Foley catheter for the past eight years. My 
> urologist keeps telling me eventually, my urethra will become eroded and it 
> will start to leak. This will cause me to need urinary diversion surgery, 
> which I've told him I'm not going to have unless it's absolutely, positively 
> necessary, because it's so invasive. So now he's telling me my next best 
> option is a suprapubic catheter. Then he tells me that he may have to give me 
> Botox in my bladder to keep my urethra from leaking. So I'm like, why not 
> wait until my urethra starts to leak and then give me the Botox and a 
> suprapubic catheter. I have a return visit in three weeks to let him know 
> what I'm going to do. Any suggestions?
> 
> Have a Blessed Day, Naomi

Re: [QUAD-L] I Hate cold weather

[Billy Lang]

Being cold seems like a normal? "Quad Thing".

When I start the shakes I nuke a neck warmer for 2 minutes. It is Nirvana, puts 
me to sleep.

Don't let what you cannot do interfere with what you can do!
 
Billy Lang


>
> From: Lissette Whitehead 
>To: Gmail ; "daa...@aol.com"  
>Cc: "r.pra...@sbcglobal.net" ; "quad-list@eskimo.com" 
> 
>Sent: Thursday, October 24, 2013 10:35 PM
>Subject: RE: [QUAD-L] I Hate cold weather
>  
>
>
>Yeah, wearing a hat and a scatf really helps. Keeping your head and feet warm 
>is important. I wear ugh boots all the time. Some red wine also helps! :)
>
>
>
>Lissette Whitehead
>www.lwgripgloves.com
>
>
>
>
>   
>
>
>
>
>CC: r.pra...@sbcglobal.net; quad-list@eskimo.com
>From: bobbiehumphre...@gmail.com
>Subject: Re: [QUAD-L] I Hate cold weather
>Date: Thu, 24 Oct 2013 22:31:37 -0400
>To: daa...@aol.com
>
>
>I keep warm, in New Jersey, by wearing a hat and scarf.  Bobbie 
>
>
>
>
>Smile Everyday
>
>On Oct 24, 2013, at 7:37 PM, daa...@aol.com wrote:
>
>
>I agree with you. Ron. I get cold when it is 70°. I prefer 77°. Ha 
ha.
>>Already wearing sweaters and long-socks. I don't know if they have these 
for quad fellows, but I always buy over the knee socks. Our legs are thin so 
they go clear up to your hips. I have never worn to tight socks that are for 
circulation. They come in colors too. They are to try. I like a loser warm 
sock. 
What do the rest did you wear to keep warm. Sometimes I will wear a scarf in 
the 
house if I get cold. They have so many fur scarves out now. I don't think there 
would be anything wrong with a guy wearing a warm scarf.
>>
>>Dana.
>>
>>I 
don't even like fall. I prefer the 80° weather all year round.
>>
>>I usually 
buy Hue. Anytime I see them. I buy some more because you never know when they 
are not going to be in style and you cannot find them anymore. 
>>In a message dated 10/24/2013 6:02:34 P.M. Central Daylight Time, 
>>r.pra...@sbcglobal.net writes: 
>> 
>>>The cold will test any quad. Im already using a sock hat and double  shirts 
>>>and its not november yet. The 73 degrees in the house feels cold to  me. 
>>>Ron 
>>>
>>> 
>>>
>>>
>>>From: Derrick Winegardner  
>>>To: quad-list@eskimo.com 
>>>Sent: Thursday, October 24, 2013 5:57 PM
>>>Subject: Re: [QUAD-L] I Hate cold  weather
>>> 
>>>
>>>
>>>Yep, my furnace has been running all day.
>>>I'm ready to head 
  south.
>>>Derrick in PA
>>>
>>>
>>>On 10/24/2013 5:33 PM, gah17...@aol.com wrote:
>>> 
>>>It is cold in Pennsylvania! 
>>>>
>>>>
>>>>Glenn Henry
>>>>
>>>>G.A.Henry Radio
>>>>100 Mill Street
>>>>Washington 
Boro, PA 
  17582
>>>
>>>
>>>
>
>

Re: [QUAD-L] When you went to Rehab

[Billy Lang]

Sent from Billy Lang's iPad


> On Oct 14, 2013, at 17:15, Gmail  wrote:
> 
> Hi All,
>   When you all went to 
> Rehab;
> 1. How did you get there?   Ambo Jet Newark to Denver
> 2. Was family there with you?  Yes
> 3. How long were you in the hospital?  One Month
> 4. How long were you in Rehab. 4 Months
> 5. When you went home, were there minor or major conversions necessary? Yup
> 6. Did you go straight home or a nursing home first?  Home
> 7. What was your home waiting for you doable medical equipment wise?  Yes
> 8. How many of your "friends" were there to be by your side? 5-10
> 9. How many siblings do you have to help you out when you first got home? 0
> 10. Did you feel you had enough rehab or did you go on to outpatient rehab? 
> Outpatient 
> 
> Smile Everyday
> 

Re: [QUAD-L] Oddities

[Billy Lang]

When I am food shopping I count the times people say "Sorry" as I navigate 
among shopping carts at the supermarket. I answer "I forgive you." And watch 
the reactions.

Why do people stand in the doorway when holding a door for me and my chair?



Sent from Billy Lang's iPad


> On Sep 27, 2013, at 14:04, Don Price  wrote:
> 
> 
> -I can't feel my feet, but I still have to have them covered at night or I 
> can't sleep.
> 
> -I can tell when I have a mosquito bite anywhere on my arm because my fingers 
> start spasming.
> 
> -If I start to go somewhere in my powerchair but the power is turned off I 
> nearly fall over forward.
> 
> -After 30 years of maneuvering my chair in public I've developed the 
> almost-psychic ability to know when people are going to abruptly stop walking 
> or back up.
> 
> -Even though I know I'm paralyzed, when a ball rolls up to me I still try to 
> kick it.
> 
> -I love holding doors open for people because they just don't expect it. 
> 
> 

Re: [QUAD-L] Disney Changes Policy Regarding Riders w/ Disabilities

[Billy Lang]

Don,

Last time I went to Disney, I had an episode with some younger people waiting 
at the exit to get on a ride, with us. They had a clunker wheelchair with one 
guy pushing another girl. and a third person with them. I was in my power chair 
with my family (5 of us). 
While we waited The girl in the chair got up and the third person sat down in 
the clunker. 
I went bat shit.  Faced with a quad screaming, "ARE YOU F***KING KIDDIN ME?" 
And moving the power chair slowly, but straight at them, they left.

Like you, I too am sad to see the policy go, especially because of assholes 
like those above, but getting a fast ride pass seems like a good alternative. 
At least you get to stay in line with the rich people.

And yes, it did make me feel special. There are few things that do.

Sent from Billy Lang's iPad


> On Sep 24, 2013, at 20:19, Don Price  wrote:
> 
> 
> I understand the policy change too. There were a lot of people abusing the 
> system.
> 
> My only additional comment is: there is not really 'equal treatment' at 
> Disneyland for wheelchair users. Equal treatment to me would mean the park 
> were fully accessible, including all the rides. If only half the rides and 
> three quarters of the park are wheelchair accessible, there is definitely no 
> equal treatment. Yes, I understand not everything or every place could [or 
> should] be accessible.
> 
> When I paid my $97 adult admission fee to get into Disneyland I felt it was 
> reasonable because even though I could only use some of the rides at least I 
> knew I would have quicker access to the limited rides I could get on. Perhaps 
> with this change they will consider a reduced ticket for wheelchair users? 
> Not likely as that would get abused too.
> 
> One last thing: being able to take my niece and nephew to the front of the 
> line made me feel kind of good in a way. For a change the wheelchair became 
> an advantage instead of an obstacle. I'm kind of sad that has been taken 
> away. But, I do understand.
> 
> Don.
> 
> From: "wheelch...@aol.com" 
> To: donpric...@yahoo.com; quad-list@eskimo.com 
> Sent: Tuesday, September 24, 2013 4:18 PM
> Subject: Re: [QUAD-L] Disney Changes Policy Regarding Riders w/ Disabilities
> 
> I don't like it, but I understand.  Both Abuses and Fair & Equal Treatment, 
> per ADA.  ADA offered equal treatment, not better treatment.   Besides, 
> Disney Properties have been slam'd with lawsuits, many of them unfounded and 
> dismissed.  Like I said, I don't like it... but I fully understand the change.
> Best Wishes
>  
> In a message dated 9/24/2013 3:49:19 P.M. Central Daylight Time, 
> donpric...@yahoo.com writes:
> People with disabilities will no longer go straight to the front of lines at 
> Disneyland and Walt Disney World under a policy change park officials say is 
> a response to growing abuse of the system.
> What do you think about Disney's decision? Join the conversation 
> onFacebook.com/NBCLA
> Under the change, visitors with special needs will be issued tickets with a 
> return time and a shorter wait similar to the FastPass system that's offered 
> to everyone...
> 
> http://www.nbclosangeles.com/news/local/Disneyland-Disabled-No-Longer-Skip-Lines-224810762.html
> 
> 

Re: [QUAD-L] Work question....

[Billy Lang]

Online courses towards a  will open up many opportunities. Add voice 
recognition to your tech inventory (if u have not already done so). 
Inventory of jobs by quads that I know personally include psychologists, 
psychiatrist, published novelists, poetess, physiatrists (2), software and 
application programmers, web developers et.al.

Danny, pick something that you love to do. Although you may not be physically 
capable you can still provide positively to the endeavor by documenting, 
advertising or teaching others.

Just don't let what you cannot do interfere with what you can do!

Sent from Billy Lang's iPad


> On Sep 21, 2013, at 8:57, wheelch...@aol.com wrote:
> 
> Do you have any degrees, certifications?  Are you willing to go back to 
> school for additional school or training?
>  
> Best Wishes
>  
> In a message dated 9/21/2013 5:22:14 A.M. Central Daylight Time, 
> da...@immortaldesigns.co writes:
> I’m technically a c2 incomplete asymmetrical quadriplegic and wondering if 
> you guys could give me ideas work I’m able to do? I can move my right arm 
> only a little up to my wrist, my bicep is strong but my tricep is weak so I 
> can barely move my arm since extending my arm takes effort and my arm will 
> start curling in eventually, get stuck and I need assistance extending it 
> again. My left arm is completely paralyzed… I can use a computer with the use 
> of a mouth joystick called a quadjoy and onscreen keyboard. I also have a 
> trach atm… The reason I mentioned what function I have was purely to help you 
> with recommendations. Before my accident I was a network security engineer 
> and computer programmer. I’m good with math, technology, science and problem 
> solving.
> 
> Thanks in advance for your suggestions and feedback
> 
> -Danny

Re: [QUAD-L] Does anyone take amatiza?

[Billy Lang]

1. Senna comes in tea bags as well as a pill
2. Senna makes everything mushy
3. Senna doesn't cost a copay of $200 a month
4. Senna draws water from the intestinal wall to help things along.

So, when u have to go #2 and u can put up with #2 above u don't have to worry 
about #3 !


Which reminds me of a joke.

A father was teaching his young son how to pee like a big boy with the by the 
numbers method.
1. Lift the seat
2. Take it out
3. Skin it back.
4. Pee in the bowl
5. Shake it
6. Put it back.

It worked really well. You could hear the boy reciting the numbers every time 
he went to pee, until that one fateful day when the parents heard the boy 
saying:
" 3 5..3 5..3 5"

Sent from Billy Lang's iPad


On Sep 1, 2013, at 1:14, daa...@aol.com wrote:

> $200, wow, that is a lot.  How does it work different than Senna?
> Dana
>  
> In a message dated 8/31/2013 9:20:35 P.M. Central Daylight Time, 
> diannal...@aol.com writes:
> I tried it at 8mg but it really made my belly hurt w/o results so I didn't 
> bother to increase.
> Dianna
> Yes,
> I take 48 mg night b4 the program at 8:30 am. I experimented with 8, 16 and 
> 24 daily until I found what worked for me. 
> 
> I am taking heavy opiate dosages, and Amitiza works alone without any other 
> suppliments.
> $200 month copay smarts tho.
> 
> Sent from Billy Lang's iPad
> 
> 
> On Aug 29, 2013, at 19:17, jume9...@comcast.net wrote:
> 
>> Does anyone take Amatiza? Does it work in one day or should I take my usual 
>> laxatives the night b4 a bowel care day? How much do you take?
>> 
>> Meredith
> 
> -Original Message-
> From: Billy Lang 
> To: jume 
> Cc: quad-list 
> Sent: Sat, Aug 31, 2013 6:08 pm
> Subject: Re: [QUAD-L] Does anyone take amatiza?
> 
> Yes,
> I take 48 mg night b4 the program at 8:30 am. I experimented with 8, 16 and 
> 24 daily until I found what worked for me. 
> 
> I am taking heavy opiate dosages, and Amitiza works alone without any other 
> suppliments.
> $200 month copay smarts tho.
> 
> Sent from Billy Lang's iPad
> 
> 
> On Aug 29, 2013, at 19:17, jume9...@comcast.net wrote:
> 
>> Does anyone take Amatiza? Does it work in one day or should I take my usual 
>> laxatives the night b4 a bowel care day? How much do you take?
>> 
>> Meredith

Re: [QUAD-L] Does anyone take amatiza?

[Billy Lang]

Yes,
I take 48 mg night b4 the program at 8:30 am. I experimented with 8, 16 and 24 
daily until I found what worked for me. 

I am taking heavy opiate dosages, and Amitiza works alone without any other 
suppliments.
$200 month copay smarts tho.

Sent from Billy Lang's iPad


On Aug 29, 2013, at 19:17, jume9...@comcast.net wrote:

> Does anyone take Amatiza? Does it work in one day or should I take my usual 
> laxatives the night b4 a bowel care day? How much do you take?
> 
> Meredith

Re: [QUAD-L] Rejoyce - hand device

[Billy Lang]

Helps paras by 17% vs 10% doing treatments without the device. The results are 
negligible over an 8? Week regiment. 
http://www.hometelemed.com/category/rejoyce/

I agree withe Don's $.002.

Sent from Billy Lang's iPad cell: 732-245-6424


On Aug 14, 2013, at 15:58, donald scott  wrote:

> Any extra movement will increase your balance and strength. As far as it 
> making your hands start to work it's bull crap in my opinion. I see no proof 
> of finger movement or new muscles in the arm working.
>  
> My 2 cents, Donald
> 
> From: William Willis 
> To: "quad-list@eskimo.com"  
> Sent: Wednesday, August 14, 2013 11:40 AM
> Subject: FW: [QUAD-L] Rejoyce - hand device
> 
> I thought it sounded a bit fishy. Thanks, Greg.
> 
> From: g...@eskimo.com
> To: pjacob...@san.rr.com; quad-list@eskimo.com
> Date: Wed, 14 Aug 2013 11:35:16 -0700
> Subject: Re: [QUAD-L] Rejoyce - hand device
> 
> I read the article and thought it sounded quite cool. So I searched for on 
> the web and found a YouTube video about it. It's nothing like what the 
> article says. The ReJoyce Hand and Arm Rehabilitation System is basically an 
> exercise machine. It's like a 4 foot long plastic elbow shaped device. The 
> one end of it the paralyzed person holds onto as good as they can, the other 
> end is attached to the table and connected to a computer. The elbow joint let 
> it move in all directions. So as you move around it moves the cursor on the 
> computer. So you move it around playing a game on the computer. It helps with 
> exercise, balance, and coordination. At least the one I saw does not actually 
> open and close your hand. It looks like it could be a home exercise machine. 
> It might actually help with balance and coordination. But not the miracle 
> device that open and close at hand.
> Greg
>  
>  
> 
>  
>  
>  
> > Anyone know about this?
> > http://www.apparelyzed.com/forums/topic/11978-device-stimulates-
> > paralyzed-hands-arms-to-move-
> > again/http://www.apparelyzed.com/forums/topic/11978-device-
> > stimulates-paralyzed-hands-arms-to-move-again/
> 
> 

Re: [QUAD-L] Roho custom cushion

[Billy Lang]

I am on my second one. The Isials are suspended over the hole area of the 
cushion to reduce or help heal wounds by lessening the pressure.  Great 
comfortable cushion. Go to Spinlife.com:

http://www.spinlife.com/critpath/match.cfm?categoryID=90&productIDs=72296,251,89646,257,89850,247,261,89673,260&CFID=609454&CFTOKEN=30799101

$349

Sent from Billy Lang's iPad


On Jul 27, 2013, at 20:11, Gmail  wrote:

> Hi All,
>  Has anybody ever gotten a custom Roho cushion? I'm getting one that has, 
> in the Ishium area, a " tear down" area where a 2" high profile Roho channels 
> down to 1 1/4" at the Ishium area .
> Or dose anybody have a direct contact number, and name, of someone I can talk 
> to before I order and personally pay out-of-pocket for a $500 cushion?
> Bobbie 
> 
> 
> 
> 
> Sent from my iPad

Re: [QUAD-L] VA stuff.

[Billy Lang]

East Orange NJ

Sent from Billy Lang's iPad cell: 732-245-6424


On Jul 25, 2013, at 18:39, Quadius  wrote:

> what SCI clinic are they talking about? I belong to the Tampa SCI
> quadius
> 
> 
> On Thu, Jul 25, 2013 at 11:32 AM, Billy Lang  wrote:
>> Is anyone using the VA for health services? I just registered for benefits 
>> (non service connected), and they want me to check in and stay at the 
>> hospital for 3 to 5 days. They have an SCI team approach that all The 
>> specialty doctors can see me in that time.
>> 
>> I don't want to do this because it opens me up to infections, pressure 
>> wounds etc. Just don't feel I should be in a hospital unless I am sick.
>> 
>> Any advice?
>> 
>> Sent from Billy Lang's iPad cell
>> 
>> 
> 

[QUAD-L] VA stuff.

[Billy Lang]

Is anyone using the VA for health services? I just registered for benefits (non 
service connected), and they want me to check in and stay at the hospital for 3 
to 5 days. They have an SCI team approach that all The specialty doctors can 
see me in that time.

I don't want to do this because it opens me up to infections, pressure wounds 
etc. Just don't feel I should be in a hospital unless I am sick.

Any advice?

Sent from Billy Lang's iPad cell

Re: [QUAD-L] Fentanyl patch

[Billy Lang]

Naomi,

I change my patches every 48 hours. I found that for me they lose their 
effectiveness at a 72 Hr change.
I recently added Lyrica, Celebrex and a larger dose of Clonopin 1.0 2x a day 
from .5 once. 
The carousel keeps going round and round.

Stay well.  
Sent from Billy Lang's iPad who would kill for a four.


On Jun 25, 2013, at 8:53, Naomi Hudson  wrote:

> Billy, how often do you change your patches? I have 150 µg every 72 hours and 
> Oxycodone for breakthrough pain. I'm also on Lyrica and Cymbalta for pain. 
> With all of that, it takes my pain down about a four, which is tolerable for 
> me.
> 
> Have a Blessed Day, Naomi
> 
> 
> -----Original Message-
> From: Billy Lang 
> To: jume 
> Cc: quad-list 
> Sent: Thu, Jun 20, 2013 4:04 pm
> Subject: Re: [QUAD-L] Fentanyl patch
> 
> I have been wearing 250 mcg/ hr for two years now. Yes it causes severe 
> constipation. I take 2 Amitiza 24mg per day and Metamucil fiber to firm up 
> the very watery excrement.
> 
> You will have to experiment to see what works for you.
> 
> Fentanyl is synthetic Morphine. I also take Oxycodone to help alleviate the 
> pain. It doesn't go away but it does make it manageable . Good Luck
> 
> 
> 
> Sent from Billy Lang's iPad 
> 
> 
> On Jun 20, 2013, at 11:51, jume9...@comcast.net wrote:
> 
>> Does anybody use the fentanyl patch? Does it cause constipation?
>> 
>> Meredith

Re: [QUAD-L] Fentanyl patch

[Billy Lang]

I have been wearing 250 mcg/ hr for two years now. Yes it causes severe 
constipation. I take 2 Amitiza 24mg per day and Metamucil fiber to firm up the 
very watery excrement.

You will have to experiment to see what works for you.

Fentanyl is synthetic Morphine. I also take Oxycodone to help alleviate the 
pain. It doesn't go away but it does make it manageable . Good Luck



Sent from Billy Lang's iPad 


On Jun 20, 2013, at 11:51, jume9...@comcast.net wrote:

> Does anybody use the fentanyl patch? Does it cause constipation?
> 
> Meredith

Re: [QUAD-L] Cleaning Glasses!

[Billy Lang]

Try a microfiber static free cloth. I also clean the Gorilla glass on my IPAD 
with it. I am C5/6 so it's a challenge cleaning one lens without smudging the 
other. Perseverance is needed.

Sent from Billy Lang's iPad 


On Jun 16, 2013, at 20:27, Lissette Whitehead  wrote:

> I just take them off and rub them on my shirt, if I'm wearing long sleeves, I 
> use my sleeve, of course I have dropped the a few times and they don't always 
> turn out very clean, but sometimes it's better than nothing sometimes.
> 
> 
> Lissette Whitehead
> 
> 1177 BroadwaySte. 18, apt. 127
> 
> Chula Vista,CA 91911
> 
> www.lwgripgloves.com
> 
> 
> 
>  
> 
> 
> 
> Subject: Fwd: [QUAD-L] Cleaning Glasses!
> From: lwillis...@yahoo.com
> Date: Sun, 16 Jun 2013 08:38:31 -0400
> To: quad-list@eskimo.com
> 
> If you use a tissue, make sure it does not contain lotion. Those will grease 
> your lens in a hurry.
> 
> Sent from my iPad
> 
> Begin forwarded message:
> 
> Resent-From: quad-list@eskimo.com
> From: Naomi Hudson 
> Date: June 16, 2013, 1:43:30 AM EDT
> To: blackwood4...@yahoo.com, quad-list@eskimo.com
> Subject: Re: [QUAD-L] Cleaning Glasses!
> 
> How are you cleaning them now and what do you use to clean them with? I 
> always have to call someone to clean mine and they use eithe Windex glass 
> cleaner, Dawn dishwashing detergent or Sight Saver. Eyeglass towelettes, 
> whichever is available
> Have a Blessed Day, Naomi
> 
> 
> -Original Message-
> From: Mike Mills 
> To: QUAD-L list 
> Sent: Sat, Jun 15, 2013 6:33 pm
> Subject: [QUAD-L] Cleaning Glasses!
> 
> I've been wearing glasses off and on for several years, now I'm wearing my 
> new glasses full time. When I clean them it leaves a film on the lens. Does 
> anybody here have any tips on how a quad can clean his glasses without having 
> to call on someone else?

[QUAD-L] no Qlist mail

[Billy Lang]

First time in yrs, no mail since 4/3

 

Don't let what you cannot do interfere with what you can do!

 

Billy

 

Re: [QUAD-L] Home Health Aides

[Billy Lang]

Thanks ev1. Youse guys r the best.

Sent from Billy Lang's iPad 


On Mar 17, 2013, at 19:20, wheelch...@aol.com wrote:

> Billy, I have included this Link to New Jersey'sCenters for Independent 
> Living.  There are more then a dozen in your State, beginning with Edison.
>  
>  
> CIL's located in the state of NJ
>  
>  
>  
> Call the closest in your area to serve you with information and resources. 
> I'm sure the Discharge Planners at Kessler Rehab Center may also be aware of 
> your closest CIL.
>  
> Best Wishes
>  
>  
>  
>  
> In a message dated 3/17/2013 2:53:31 P.M. Central Daylight Time, 
> blan...@verizon.net writes:
> Monmouth County NJ, thanks
> 
> Sent from Billy's IPAD2
> 
> On Mar 17, 2013, at 12:38, wheelch...@aol.com wrote:
> 
>> Congrats Billy!  You have done both good and well in raising your daughter 
>> and the grandchildren.  Thanks to computers, and cell phones you will always 
>> be in contact with them and watch them grow.
>>  
>> I'm sure you have a Federally Funded, Center For Independent Living in or 
>> near your community to guide you in your search for information, as it may 
>> vary from state to state.  What State and County do you reside?
>>  
>> Best Wishes
>>  
>> In a message dated 3/17/2013 11:05:06 A.M. Central Daylight Time, 
>> blan...@verizon.net writes:
>> Guys,
>> 
>> My wife and I are finally empty nesters with my daughter moving south with 
>> her husband and three of my grandchildren 7,2 and 6 mos. We're going to miss 
>> them terribly. I have been Connor's male influence for 5 of his seven years, 
>> and my heart is breaking to see him go.
>> 
>> Anyway, I am 64 and My wife my primary caregiver for 23 years is 65. She 
>> can't physically take care of me anymore. (Transfers mainly).
>> 
>> How do we go about getting an aide in home? Who pays, and what is the going 
>> rate? I have nurses in the morning who do ADL, BP and cath care. That's done 
>> in about an hour every day. The need is needed when I go back down in the 
>> evening or during the day, if necessary.
>> 
>> Thanks for any advice you can offer.
>> 
>> Sent from Billy Lang's iPad

[QUAD-L] Home Health Aides

[Billy Lang]

Guys,

My wife and I are finally empty nesters with my daughter moving south with her 
husband and three of my grandchildren 7,2 and 6 mos. We're going to miss them 
terribly. I have been Connor's male influence for 5 of his seven years, and my 
heart is breaking to see him go.

Anyway, I am 64 and My wife my primary caregiver for 23 years is 65. She can't 
physically take care of me anymore. (Transfers mainly).

How do we go about getting an aide in home? Who pays, and what is the going 
rate? I have nurses in the morning who do ADL, BP and cath care. That's done in 
about an hour every day. The need is needed when I go back down in the evening 
or during the day, if necessary.

Thanks for any advice you can offer.

Sent from Billy Lang's iPad 

Re: [QUAD-L] Cool cell phone gadget

[Billy Lang]

Got it, thanks!

Sent from Billy Lang's iPad cell: 732-245-6424


On Feb 28, 2013, at 22:31, Don Price  wrote:

>  
> I found a pretty neat [and inexpensive] cell phone add-on that I think might 
> help many quads pick up or hold their cell phones easier: it's a little 
> plastic loop, called a ClipHanger, that sticks to the back of your cellphone. 
> The loop allows you to slide your finger/thumb into it to pick up the phone 
> or to hang the phone on a hook. At $5.95 it's a cheap solution if you need it!
>  
> http://www.cliphanger.com/index.php?p_resource=items_sticks
>  
>  

Re: [QUAD-L] BP

[Billy Lang]

See ur Md. you need to see if ur blocked. Also, ask your Dr. About Amitiza. 
Pill form up to 4,8 or 24  mcg. I take monstrous amounts of opiates and the 
pills along with fiber keep me regular. 

You will need to experiment with dosages to find the right balance for you.


Sent from Billy Lang's iPad 


On Feb 18, 2013, at 19:08, jume9...@comcast.net wrote:

> Try 2 sennakots  or milk of magnesia, eat fruit and lots of it, if you 
> continue in pain go see the doctor.
> 
> From: quadriple...@cox.net
> To: quad-list@eskimo.com
> Sent: Monday, February 18, 2013 1:27:16 PM
> Subject: [QUAD-L] BP
> 
> The last 2 weeks I've had such stomach pains. I've been pooping rocks and 
> nothing has helped. I've tried Miralax, softeners, etc. I don't want to use 
> too much, that hurts just as much. I keep using it more often, but I've never 
> had to drink Miralax more than 2 times in a week. Then I can go months 
> without it. I'm on my like 6th dose in 2 weeks. I want to double over in 
> pain. G
> 

Re: [QUAD-L] Wound Care

[Billy Lang]

Thanks Don, Glen and everyone for the positive feedback. I can always count on 
u quads for the best advice based in fact and experience. 

Sent from Billy Lang's iPad cell: 732-245-6424


On Feb 12, 2013, at 15:07, donald scott  wrote:

> I forgot to mention that once the wound is closed to stop using the cream and 
> just use the patch. The cream will actually dry the wound too much after it's 
> closed.
> Donald
> From: "gah17...@aol.com" 
> To: blan...@verizon.net 
> Cc: quad-list@eskimo.com 
> Sent: Tuesday, February 12, 2013 11:58 AM
> Subject: Re: [QUAD-L] Wound Care
> 
> I am blessed to have a friend who is charge nurse in a wound clinic and deals 
> with
> the latest technology in wound healing. 
>  
> On a previous sore, she recommended using a new dressing with Safetac 
> technology. ( 
> http://www.molnlycke.com/us/Wound-Care-Products/US/Safetac-Technology/ ).  
> The dressing is called Mepilex Border dressing, ( 
> http://molnlycke.com/Global/Wound_Care_Products/UK/Product%20Sheets/Advanced/Mepilex%20Border.pdf
>  ) similar to what I have known as "mini island dressing."  The difference 
> between the two dressings is the Border Dressing uses a tape that is silicon 
> based and does not damage the skin when removed or when you shift weight.  
> The border dressing has a telfa style center but is very thin.  A normal 
> dressing would have bunched in this area and the border dressing does bunch 
> to some extent, but less than the island dressing and is much less a problem.
>  
> Everyone is aware of the white skin that surrounds a wound as well as 
> whiteness in the center of the wound.
>  
> The whitish film that is in the center of the wound is called bioberden   A 
> product called acticoat, was placed on the area then covered it with the 
> border dressing.  Although manufacturer states that it can remain on seven 
> days she recommends only three or four days.  The acticoat contains silver 
> which helps to remove the white area and keep the area free of bacteria.  
> After the wound is clearer of bioberden, we discontinued using acticoat and 
> started to use another product Puracol AG+ which also has silver in the 
> product.  The Puracol was covered with the Border dressing and remained on 
> three or four days. Puracol is a collagen product
> ( 
> http://www.allegromedical.com/wound-care-c541/puracol-plus-ag-wound-dressing-with-silver-p557629.html
>  )
> the collagen is absorbed into the wound and promotes healing.
>  
> As I started to search the Internet to purchase the border dressing and 
> Puracol AG+, IMPORTANT MUST BE AG+(with silver), I found some prices 
> ridiculous.  One vendor had the border dressings at a price of $75 but with a 
> little searching I found them for $25.  The same was true for the Puracol.
>  
> In addition we will be using the silicone tape ( 
> http://www.molnlycke.com/us/Wound-Care-Products/Product-Selector---Wound-division/Tabs/Products/Mepitac/
>  ) instead of the Medfix tape. 
>  
> Works for me!
>  
> Glenn
>  
> 
>  
> 
> Glenn Henry
> 
> G.A.Henry Radio
> 100 Mill Street
> Washington Boro, PA 17582
>  
> In a message dated 2/12/2013 2:03:51 P.M. Eastern Standard Time, 
> blan...@verizon.net writes:
> Got a pressure sore the size of a quarter on my ass. My pharmacy informed me 
> that Regranex is not be manufactured anymore, And I have $100 co-pay for it. 
> I'm using Hydrogel, but the wound needs something more effective before it 
> starts Tunneling. 
> 
> Any suggestions? I heard natural bee honey works, anyone have experience with 
> it?
> 
> Me Bum is causing lousy spasms.
> 
> Thanks.
> 
> Sent from Billy Lang's iPad
> 
> 

Re: [QUAD-L] Medical marijuana?

[Billy Lang]

I use an Aroma Therapy machine. A small amount of weed is "cooked" and the 
vapors are captured in a collection bag. The resultant vapors are almost pure 
THC, and when inhaled gives a smokeless high, without the coughing.

Works well for me.



Sent from Billy Lang's iPad 


On Feb 12, 2013, at 14:59, donald scott  wrote:

> I don't take the thc pills but I do smoke medical weed. My blood preasure has 
> always been low do to being a quad. My doctor suggested I take sodium pills 
> and add more salt to my diet. It helps the low preasure. Some times when I 
> spark it up I get lightheaded but hey, who doesn't...hahaha
>  
> Blaze on,
> Donald C6 22 years post
> 
> From: "ntpgrn...@aol.com" 
> To: quad-list@eskimo.com 
> Sent: Tuesday, February 12, 2013 9:49 AM
> Subject: [QUAD-L] Medical marijuana?
> 
> My son started to take the thc pills a few weeks ago and his bp has not been 
> the same since. Anyone have the same problem? I didnt notice it as a side 
> effect. Actually only taking one a day instead of three as prescribed.???
> 
> Sent from my Verizon Wireless 4G LTE Smartphone
> 
> 
> 

[QUAD-L] Wound Care

[Billy Lang]

Got a pressure sore the size of a quarter on my ass. My pharmacy informed me 
that Regranex is not be manufactured anymore, And I have $100 co-pay for it. 
I'm using Hydrogel, but the wound needs something more effective before it 
starts Tunneling. 

Any suggestions? I heard natural bee honey works, anyone have experience with 
it?

Me Bum is causing lousy spasms.

Thanks.

Sent from Billy Lang's iPad

Re: [QUAD-L] Dry Skin, Head Itching

[Billy Lang]

Had same Problem until I switched to a new shampoo. Try TGel, it has a creosote 
base. Worked wonders for me.

Sent from Billy Lang's iPad

On Jan 28, 2013, at 13:55, greg  wrote:

> I've always had dry skin, but lately my head has been itching so bad it hurts.
> I thought it was sun burns, but I've been wearing hats outside and we haven't 
> had much sun the last few days.
> I've been using dry scalp shampoo, but no help. I know it gets rinsed well 
> enough. I'd scratch tell it would bleed if I could reach it good.
> It's only the top center. Right on the part. That's why I thought it was a 
> sun issue.
> Greg
> 

Re: [QUAD-L] Meds for AD

[Billy Lang]

Nitopaste or Procardia (chewed) to bring down the blood pressure in extreme 
blood pressure situations. 

Vicodin or other pain meds may relieve the pain, eventually, I  use Klonopin .5 
to relieve the anxiety, but the BP must come down or u can stroke out.   

Sent from Billy Lang's iPad

On Jan 26, 2013, at 19:00, wheelch...@aol.com wrote:

> I know of no meds for AD.  AD is a natural or un-natural warning that 
> something is/may be wrong.  Dis-arming that warning would defeat its purpose. 
>  Vicodin is normally dispensed for pain.
> If a BM is creating an AD issue, perhaps/maybe the BM should happen more 
> often to rid the body of waste solids, rather then allowing waste to build up.
> Of course, your personal doctor is the best source for information 
> regarding. YOU.
> Best Wishes
>  
> In a message dated 1/26/2013 3:31:29 P.M. Central Standard Time, 
> jume9...@comcast.net writes:
> Hi guys (and gals)
> I was wondering what if anything do you take for AD (Especially after a BM)? 
> I know that vicodin helps but I just heard that the FDA will be reclassifying 
> it and it may be harder to prescibe, especially for long term. 
> 
> Meredith

Re: [QUAD-L] Roho seat cushion

[Billy Lang]

Bobbie,

I am on a Roho Contour Select. It is a cushion with air cells but the area of 
the cushion where your Ishialls would be is cut out so your boney protuberances 
are suspended in the cutout.
I purchased the cushion from Spinlife.com. They help with the paperwork for 
insurance.

Sent from Billy Lang's iPad

On Jan 25, 2013, at 17:08, bobbie...@aol.com wrote:

> Hi All,
>   Has anybody ever gotten a specialty Roho seat cushion? As you may, or 
> may not know, I've been stuck in bed since November because of a chronic sore 
> on my right issum (sp) area. I called Roho and asked if they have any cushion 
> that dose not have any "cells" in the issum area. They told me that they make 
> "specialty cushions". She said " … you would contact your vendor and work 
> through them to properly order the specialty cushion. The cost would be under 
> $500."
>  Has anybody ever dose this through Roho?Bobbie
> 
> 

[QUAD-L] Fwd: My Buddy Ray

[Billy Lang]

> 
> From: Billy Lang 
> Sent: Saturday, January 12, 2013 1:35 PM
> Subject: My Buddy Ray
> 
> My Buddy Ray died last week. He had COPD and carried an oxygen tank along 
> with him everywhere he went. A few years ago he contracted pneumonia. He was 
> placed in a coma and put on a respirator. I never thought I would see him 
> again but he pulled through. This completely changed my perception . From 
> that day on I would never give up on anyone. Never in my realm of 
> experiencing loved ones dying did I expect Ray to breathe on his own once he 
> was taken off the respirator.
>  
> Years later, after going out to eat with my parents, Bobbie and my wife 
> Paula, Ray fell and broke his hip. It was the beginning of a long desperate 
> battle that ended ultimately in his death. At the wake there were the same 
> platitudes namely "it was his time", "he couldn't fight anymore" and "he is 
> at rest now."
>  
> Today, I got back on my old desktop computer and realized I had no new jokes. 
> For at least the last five years Ray had been sending me emails of jokes, 
> prayers, lessons on life, politics (mostly against Obama) and the occasional 
> e-card. Now, Ray did not send one a day. He would send five or the occasional 
> seven emails. Up until the middle of 2012 he would send the emails as 
> attachments where you annoyingly had to click open the email he sent then 
> click open the attachment and If the attachment opened a web address or a 
> movie there was another click. It got so frustrating that I really didn't 
> care if the email was funny.
>  
> So, as a tribute to Ray, my Buddy, here’s a message he sent me in October, 
> 2012 as an attachment:
>  
>  
> Just in case I'm gone tomorrow
> 
> As I approach my mid-seventies, I am struck by the inevitability that the 
> party must end. And one clear, cold morning after I'm gone, my wife will 
> awaken in the warmth of our bedroom and she will be struck with the pain of 
> learning that sometimes there isn't "anymore".
> No more hugs, no more special moments to celebrate together, no more phone 
> calls just to chat, no more "just one minute."
> Sometimes, what we care about the most gets all used up and goes away, never 
> to return before we can say good-bye, say "I love you."
> So while we have it, it's best we love it, care for it, fix it when it's 
> broken and heal it when it's sick.
> This is true for marriage.And old cars. And children with bad report 
> cards, And dogs with bad hips. And aging parents and grandparents. We keep 
> them because they are worth it, because we are worth it.
> Some things we keep -- like a best friend who moved away or a sister-in-law 
> after divorce. There are just some things that make us happy, no matter what.
> Life is important, like people we know who are special. And so, we keep them 
> close!
> Suppose one morning you never wake up, do all your friends know how you 
> really feel? The important thing is to let every one of your friends know 
> your true feelings, even if you think they don't love you back.
> 
>  
> RIP Ray, I miss you and the emails.
>  
> Don't let what you cannot do interfere with what you can do!
>  
> Billy
>  
> 
> 

[QUAD-L] Permobil seat program

[Billy Lang]

Hi,

 

Anybody have the procedure to program the M1 M2 M3 functions on the
Permobil C500 seat controller switches?  

 

I lost the program during a battery change.

 

Don't let what you cannot do interfere with what you can do!

 

Billy

 

RE: [QUAD-L] Quad Rehab Center

[Billy Lang]

A note of caution here. Both Unitedspinal.org and spinalcordinjury.org are
rated extremely negative by charity Navigator. See:

 

http://www.charitynavigator.org/

 

I just believe that this organization should be doing much more with the
monies donated to them.

 

From: wheelch...@aol.com [mailto:wheelch...@aol.com] 
Sent: Monday, January 30, 2012 1:20 PM
To: QUAD-LIST@eskimo.com
Subject: [QUAD-L] Quad Rehab Center

 

 

To Those Who Might Be Interested, Here's A Copy Of An Email Forwarded To
Eric.

I think its a nice reference

Best Wishes


  _  


From: sciinj...@aol.com
To: wheelch...@aol.com, anyuer...@yahoo.com
Sent: 1/30/2012 12:05:14 P.M. Central Standard Time
Subj: Re: Quad Rehab Center

 

Hello Eric,

 

Joni and Friends is an organization that has a service called Wheels for the
World. You may want to ask if any wheelchairs are available.
Http://www.joniandfriends.org/jonis-corner/jonis-bio/
 

 

The American Spinal Injury Association is an organization for health
professionals that set the standards of spinal cord injury care.  All of the
major facilities belong to this organization.

  http://www.asia-spinalinjury.org/   

 

This is a list of spinal cord injury centers -
http://www.sci-info-pages.com/rehabs.html

 

The National S pin al Cord Injury Association is now a program of United
Spinal Association.

www.unitedspinal.org/ http://www.spinalcord.org/resource-center/ 

 

I hope this will be of some help.

 

Mercedes

Mercedes Rauen
Executive Director
Spinal Cord Injury Association of Illinois
1032 S. La Grange Road
La Grange,IL 60525
708-352-6223 Fax 708-352-9065

February 18, 2012 - Dinner with Friends, Lexington House, Hickory Hills 
July 21, 2012 - Golf Outing, Gleneagles Country Club, Lemont
October 7, 2012 - Bank of America Chicago Marathon 
Visit us on Facebook
SCIA: A member of Community Health Charities of Illinois, a workplace giving
program. 

 

 

In a message dated 1/30/2012 7:23:35 A.M. Central Standard Time,
wheelch...@aol.com writes:

Greetings!

 

No single individual would/could help your cause more then the National
Spinal Cord Injury Association,  They are located in Washington DC.

Best Wishes

 

In a message dated 1/30/2012 5:34:55 A.M. Central Standard Time,
anyuer...@yahoo.com writes:

 

- Forwarded Message -
From: Anyumba Erick 
To: "quad-list-requ...@eskimo.com"  
Sent: Monday, January 30, 2012 2:31 PM
Subject: Quad Rehab Center

 

Hi guys,

My name is Erick Anyumba  c6/7 from Nairobi Kenya. I and my friends are
trying to set up a quad rehab center , a fast one in Kenya , we need your
input in doing this.Any idea on how to go about it , how to get equipments
for rehab through funding organizations or donors.

Also there could be members with equipments they no longer use but important
to us ,they can donate. Some items have become obsolete in your country but
to us they could be very useful.

Through this forum I have gathered a lot of information that is useful in
establishment of a quad center here and give hope to other quads in my
country.

Any one interested in helping us is free to contact me through quad-list or
through my mail; anyuer...@yahoo.com

Thank you all for your helpful postings that keep encouraging us

 

 

 

Re: [QUAD-L] custom electronics question... Re: controlling multiple computers

[Billy Lang]

I use a bluetooth headset that allows me to control my desktop or laptop 
without hardwiring. There are a number of programs that allow for control of 
client systems' desktops from a single server. Here is one called called 
Synergy(free) that is designed to control multiple PCs with one keyboard and 
mouse (and one version of Dragon systems).
 
 
Check out:


http://lifehacker.com/254648/how-to-control-multiple-computers-with-a-single-keyboard-and-mouse


Using a client/server  method  you can  logically control multiple desktops 
from a single system .  One caveat however, you should be running  the same 
operating system,  otherwise  you can go nuts  trying to remember  what 
commands  work with what systems . 

 There are others check out this Google link  for more info 

http://www.google.com/webhp?sourceid=toolbar-instant&hl=en&ion=1&qscrl=1&nord=1&rlz=1T4ADSA_enUS410US410#hl=en&sugexp=ppwl&cp=21&gs_id=l&xhr=t&q=controlling+multiple+computers+with+one+keyboard+and+mouse&qe=Y290cm9sbGluZyBtdWx0aXBsZSBj&qesig=u5iw3H9IMNPLe_9b6oCtbw&pkc=AFgZ2tnpHwjjB8b93tp29KnIQDVE9Hq0Phd6iLeqBQcEOfgW5XIwxBBYS8zrOgCbaDrMq4eq_17BFRUhls1cinvYnQloCsplVg&pf=p&sclient=psy-ab&qscrl=1&nord=1&rlz=1T4ADSA_enUS410US410&site=webhp&source=hp&pbx=1&oq=cotrolling+multiple+c&aq=0sx&aqi=g-sx1&aql=&gs_sm=&gs_upl=&bav=on.2,or.r_gc.r_pw.,cf.osb&fp=fba6f4574781131a&ion=1&biw=1592&bih=821
 


Don't let what you cannot do interfere with what you can do!

Billy

www.langfoundation.org


>
>From: Dave Krehbiel 
>To: "'Quad-List@Eskimo. Com'" 
>Sent: Friday, November 11, 2011 10:58 AM
>Subject: [QUAD-L] custom electronics question... Re: controlling multiple 
>computers
>
>
>I would like some advice on some custom electronics/wiring.
> 
>I am currently using Dragon NaturallySpeaking to control each of my two 
>laptops. I use a shotgun microphone so that I am not tethered to the PC by a 
>headset. This works pretty well.
> 
>Before my accident, I used to work with multiple PCs simultaneously. I would 
>like to be able to do this again, especially because I am using Skype to make 
>outbound telephone calls and Skype does not seem to want to live in little 
>predefined Windows... it seems to open new windows wherever it wants.
> 
>I would like to create a device so that I can direct the input of the 
>microphone to laptop number one, or laptop number two, or neither. It would 
>also be helpful if I could have an indicator light attached to the top of each 
>laptop so that I would know which laptop (if any) . I was currently 
>controlling using voice commands.
> 
>Do any of you have experience getting small projects like this done? . Can you 
>recommend any sources for micro switches?
> 
>Thanks, and take care,
> 
>Dave Krehbiel
>
>

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

[Billy Lang]

Hi Tod, Guys,

 

I have been reading with interest your posts on pain, conditions and meds.
Although our pain manifests itself similarly, I was wondering if anyone else
is experiencing pain related to my condition?

I Have Arachnoiditis caused by the number of spinal surgeries I've had in
the past. I also have a fracture of a pars bone at L5 with disk herniations
throughout my lumbar. It is inoperable.

 

These conditions cause pain in lower back, and in my hip that radiates down
my right leg. My meds:  Fentanyl patches changed every 48 hours and
OxyContin every three hours. I have been managing my pain (most times)
augmented by self hypnosis. My pain management Dr. uses me to teach
residents by testing them and asking, "Do you think he takes too much
medicine?". Before they answer he quickly says, "he is taking the equivalent
of 146 Percocet a day without the Tylenol." The answer is that he ramped me
up over a year's time to this level. He finishes by telling them if he took
50 mg of fentanyl patch and put it on them they would be dead in an hour.
Cute story.

 

Anyway, I too suffer bowel problems caused by the opiates. We have run the
gamut of solutions, the latest being 2 cups of Senna tea, afternoon and
evening the day before the bowel program. It seems to be working well, real
loose but at least it's out. Never thought my quality of life would be
measured by whether I poop or not. Today's a good day.

 

I am 23 years post and have an appointment to get both my shoulders shot
next week. Then it's back to physical therapy twice a week to attempt to
strengthen what muscles I have left in both shoulders. Weird, can't
understand why the opiates I'm taking don't take care of the shoulder pain.
I know the shoulders are both bone on bone with tendon damage/loss after
using them without triceps all these years. We all have bone loss from the
chairs, meds etc., even our teeth are effected. 

 

Thanks for listening, I'll be watching the list a little more often. Stay
strong.

 

Don't let what you cannot do interfere with what you can do!

 

Billy

 

 

 

From: Tod Santee [mailto:mr.san...@gmail.com] 
Sent: Sunday, October 30, 2011 10:31 PM
To: quad-list@eskimo.com
Cc: g...@eskimo.com; daa...@aol.com
Subject: Re: [QUAD-L] pain in leg doctor results.( Greg) or others
interested.

 

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,  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 b

[QUAD-L] my statement to CNN

[Billy Lang]

Today the murderer of our children and friends has been brought to justice.
He has paid with his life for the horrific crimes that he planned and
executed against my family and humanity. For us, it is a very bittersweet
day. Yes, his name will live forever in history. But it will be remembered
and spoken as a curse in the minds and hearts of all freedom loving and
God-fearing people. By design, there is  no burial place for those who would
mourn his passing. I hope in his afterlife that he pays the ultimate price
for his crimes for eternity. 

 

I miss my boy Brendan and my sister Rosanne terribly. But my passing will be
sweeter knowing that the murderer can no longer hurt anyone for his
misguided ideals.

 

God bless the men who were the hand of our justice. May God keep them and
all our servicemen safe.

 

Billy Lang

Father to Brendan Lang and brother to Rosanne Lang

Murdered in the World Trade Center on 9/11

 

 

 

Don't let what you cannot do interfere with what you can do!

 

Billy

 

RE: RE: [QUAD-L] do you drive your van from a wheelchair

[Billy Lang]

Sorry Wheels

 

Just don't have time to fill out forms that would allow me to send you
e-mails. I'm sure you're an interesting person and you probably have a lot
to say on this list, but think about all of us quadriplegics having to fill
out a form from a mailing list just to communicate with you.

 

How about adding [QUAD-L] to your filter? I think this would be better for
all concerned. BTW, I accept your apology.

 

Don't let what you cannot do interfere with what you can do!

 

Billy

 

 

 

 

 

From: whe...@supernet.com [mailto:whe...@supernet.com] 
Sent: Sunday, April 03, 2011 3:23 PM
To: Billy Lang
Subject: Re: RE: [QUAD-L] do you drive your van from a wheelchair

 

I apologize for this automatic reply to your email.

 

To control spam, I now allow incoming messages only from senders I have
approved beforehand. 

 

If you would like to be added to my list of approved senders, please fill
out the short request form (see link below). Once I approve you, I will
receive your original message in my inbox. You do not need to resend your
message. I apologize for this one-time inconvenience. 

 

Click the link below to fill out the request:

 

https://webmail.pas.earthlink.net/wam/addme?a=whe...@supernet.com
<https://webmail.pas.earthlink.net/wam/addme?a=whe...@supernet.com&id=11e0-5
e27-b972247a-95d1-002128149ec2> &id=11e0-5e27-b972247a-95d1-002128149ec2

 

RE: [QUAD-L] do you drive your van from a wheelchair

[Billy Lang]

Derek,

 

I have driven Permobil's with both easy lock and Permobil lockdowns. There
is a new smaller lockdown from Permobil. Check out their website to see if
your model chair can use the new lockdown. Also, Permobil uses pins that
recess automatically up into the chair preserving the clearance of the chair
at 3 1/2 inches.

 

The fit might be tight but I have never experienced any rearing up.

 

From: Derrick [mailto:whe...@cvn.net] 
: Thursday, March 24, 2011 8:42 PM
To: quad-list
Subject: [QUAD-L] do you drive your van from a wheelchair

 

I am trying to find anyone that drives their van from a Permobil wheelchair.

I drive a full size van from an Invacare Storm series wheelchair. I've had
issues with this setup.

 

I am looking at getting a minivan and a Permobil possibly.

 

I was wondering if anybody had problems with Permobil Corpus 350ps being a
tight fit or rearing up?

Thanks for your reply,

Derrick W

 

[QUAD-L] Bum Charities

[Billy Lang]

I'm a member of the PVE (Paralyzed Veterans of America). I also belonged to
EPVA (Eastern PVA) who have changed their name to UNITED SPINAL Association.

 

I strongly suggest you check with Charity Navigator 

http://www.charitynavigator.org

 

They rate all charities and have given these guys a 0 start rating. It's a
scam perpetrated on the public to give huge salaries to their board members
and publish a slick magazine, under the guise of supposedly  helping
paralyzed vets. 

 

Really pisses me off.

 

BTW. I found that asking a simple question to telemarketers schilling for
charities:

 

"What percentage of your collected funds goes toward recipients?"

Usually gets a hangup or a supervisor who'll lie to you. 

 

NEVER GIVE MONEY OVER THE PHONE. Request a mailing if you want to
contribute, and check charity's effectiveness with above.

 

 

Don't let what you cannot do interfere with what you can do!

 

Billy

 

[QUAD-L] Need ur vote

[Billy Lang]

Guys,

 

My soon to be Son-in-law Lenny Lewis is a Singer/Songwriter and could use
help winning  a competition. (he'll get $1000 and more importantly,
exposure).

 

Vote if you like the Demo:

 

http://www.indabamusic.com/submissions/show/41976

 

 

Don't let what you cannot do interfere with what you can do!

 

Billy

 

[QUAD-L] XBOX Kinect

[Billy Lang]

Bought one 4 grandson and I'm getting used to it. Anyone else have
experience/recommendations ?

 

Don't let what you cannot do interfere with what you can do!

 

Billy

 

RE: [QUAD-L] iPad

[Billy Lang]

Nuance has dragon for ipad:

 

http://www.nuance.com/news/pressreleases/2010/20100402_iPad.asp

 

HAGTime

Don't let what you cannot do interfere with what you can do!

 

Billy

 

 

 

 

From: Lda Nscia [mailto:ldans...@yahoo.com] 
Sent: Tuesday, January 04, 2011 4:34 PM
To: quad-list@eskimo.com
Subject: [QUAD-L] iPad

 


I'm sure that this has been covered before put I just got an iPad for
Christmas and I was wondering what app would be good for my voice
recognition program?

I have Dragon NaturallySpeaking on my computer but so far all I found is
Dragon dictation for Mac.

Glenn

Louisiana Disability Alliance, NSCIA
P.O. Box 86632, Baton Rouge, LA 70817
Ph: 225-436-4519 ldans...@yahoo.com

 

[QUAD-L] Windows 7 Mouse

[Billy Lang]

Hi Guys,

 

I'm using a Kensinton 4 button trk ball on win 7. It works ok, with some
restrictions, using XMouse software.

I'm curious, what kind of Mouse (meese, mice) are u using on Win 7?

 

I'M C5/6 with no finger movement. 

 

Don't let what you cannot do interfere with what you can do!

 

Billy

 

 

Re: [QUAD-L] back-up chairs sitting

[Billy Lang]

LMAO !  Now at least you sound like a one legged guy walking on crutches. 
 
Don't let what you cannot do interfere with what you can do!

Billy

www.langfoundation.org





From: Danny Hearn 
To: quad-list@eskimo.com
Sent: Tue, December 14, 2010 6:38:34 PM
Subject: [QUAD-L] back-up chairs sitting


My 10 year old back-up chair has been sitting since I got a new chair back in 
around April. Well today the shop had to look at my newer chair because one leg 
lift cylinder needs to be replacedSo my wife has me in my old invacare and 
it is kinda riding funny from sitting so longshe has moved it twice to keep 
the solid tires from getting a flat spot or uneven area-but the tires still 
must have got a bit out of round, kinda bumpy riding now  lol...I remember 
someone else on here having that trouble earlier this year,,, does that tire 
bump straighten out in time or stay bumpy??? anyone know?  lol Dan H.***

Re: [QUAD-L] Meds for spasms

[Billy Lang]

30mg 4x day for 21 years. Had a micro rootlet rhizotomy two years after 
injury because I couldn't stay in the chair, the spasms  were so violent.
I am now on mega dosages of opiates to control painl and it seems that l my 
spasticity is being calmed by them also





From: DAVID LEWIS 
To: quad-list@eskimo.com
Sent: Sun, December 12, 2010 5:58:53 PM
Subject: [QUAD-L] Meds for spasms


Im a 51 year old quad who over my life had some spasms over the years nothing 
big.
Last 2 years I have been getting more and more spasms and had to up my baclofen 
from 30 to 40mg in the last few months.
I only started taking baclofen the last few years.
First of all , is that conidered alot?  Second, can my spasms be caused by 
something in my neck that I can check from a MRI or something.  Any advice? 
Thanks.
Johnny 

[QUAD-L] IPAD Need Experienced Input

[Billy Lang]

I'm getting an IPAD. Going for the 64gb.

Questions:

 

Wi/Fi or 3G or Both?

 

Best Stylus  - Need a fat one that allows for angled   (like this " / ")
input. I'm C5 with hardly any finger function.

 

Is anyone using the free Drragon app? If so, can u control by voice?

 

Read Reeve Foundation reccommendations, anything new in accessability apps?

 

Thanks in advance for the advice.

 

Don't let what you cannot do interfere with what you can do. 

 

Billy

[QUAD-L] FW: power lifts

[Billy Lang]

 

 

From: Billy Lang [mailto:blan...@verizon.net] 
Sent: Monday, November 01, 2010 11:49 AM
To: 'quad-list@eskimo.com'
Subject: power lifts

 

 

After 21 years, I must get a power lift for transfers. Any recommendations?
Dos or don'ts.

 

Any help is appreciated.

 

Don't let what you cannot do interfere with what you can do. 

 

Billy

[QUAD-L] power lifts

[Billy Lang]

 

After 21 years, I must get a power lift for transfers. Any recommendations?
Dos or don'ts.

 

Any help is appreciated.

 

Don't let what you cannot do interfere with what you can do. 

 

Billy

RE: [QUAD-L]

[Billy Lang]

I've noticed quite a few emails from hijacked addys showing up on the
q-list, advertising viagra, canadian phamacies, among other things. I ignore
emails with no subjects. Any other suggestions? 

-Original Message-
From: ladyno...@aol.com [mailto:ladyno...@aol.com] 
Sent: Thursday, October 21, 2010 9:51 PM
To: p_ca...@yahoo.com; tp...@umich.edu; dogfa...@gmail.com;
moncrease...@att.net; pmull...@aol.com; whitma...@dteenergy.com;
pmz...@med.umich.edu; pjc111...@aol.com; phyllis...@aol.com;
pieterheat...@shaw.ca; poaj...@sbcglobal.net; quad-list@eskimo.com
Subject: [QUAD-L]

http://tiempososcuros.freehostia.com/com.php

RE: FW: [QUAD-L] Permobil joystick and arm functions

[Billy Lang]

Jeff,
 New Modelso far, no actuator problems. I'm waiting for a software
module replacement to 
Give me 3 position memory functions. (move joystick to M1 will automatically
move all actuators
To recline/height settings. For EX. Legs up, seatback back and seat tilt to
desired  
Positions for weight shift with one push on the joystick). Had it on RS
It's really a time saver.

U have an RS seat? Did you know they discontinued making the RS? Europe
wasn't buying and US insurers
Would not pay for it.

Careful...parts may be hard to come by down the road for RS specific things.

Good Luck

Don't let what you cannot do interfere with what you can do. 
 
Billy


-Original Message-
From: Jeff [mailto:j...@vdocking.com] 
Sent: Wednesday, October 06, 2010 12:55 AM
To: Billy Lang
Subject: Re: FW: [QUAD-L] Permobil joystick and arm functions

Oh, ok. I noticed you used to have a C500 RS (which is what I have now), 
and now have a C500 ESP. Is that a new model, or is it a C500 Corpus 
with an ESP module on it? I had to have the tilt position sensor 
replaced, as well as the recline actuator. Both were defective, but that 
problem seems to be fixed. I don't have much experience in the chair 
yet, as we are still changing it to accomodate my needs.

Some of my earlier pics here:

http://www.flickr.com/photos/wheeltracks/

Billy Lang wrote on 10/01/10 17:33:

> Jeff,
> 
> I have the controller attached to my right arm rest. The chair's functions
> are activated either through the joystick or by toggle switches
immediately
> behind it. The Joystick and actuator are on a piece that bends in two
> places. Moving the controller and joystick back parallels outside the
right
> arm of the chair. It's also useful when approaching any table, allowing
the
> chair and me to come to the table edge, assuming my legs can get under the
> table.
> 
> It helps to remember to push the controller back before fully reclining.
> Otherwise, I can't reach it. 
> 
> Don't let what you cannot do interfere with what you can do!
> Billy Lang
> 
> 
> -Original Message-
> From: Jeff [mailto:j...@vdocking.com] 
> Sent: Wednesday, September 29, 2010 11:33 PM
> To: Billy Lang
> Subject: Re: FW: [QUAD-L] Permobil rear tires falling off
> 
> Can you tell me more about this feature? Sounds good.
> 
> Billy Lang wrote on 09/27/10 12:23:
> 
> 
>>*From:* Billy Lang [mailto:blan...@verizon.net]
>>*Sent:* Friday, September 24, 2010 12:47 PM
>>*To:* 'Derrick'
>>*Subject:* RE: [QUAD-L] Permobil rear tires falling off
>>
>> 
>>If I am reclined, the controller has an option that bends it 
>>parallel to the armrest. This allows me to reach the controls even in a 
>>reclined position.

FW: [QUAD-L] Permobil rear tires falling off

[Billy Lang]

 

 

From: Billy Lang [mailto:blan...@verizon.net] 
Sent: Friday, September 24, 2010 12:47 PM
To: 'Derrick'
Subject: RE: [QUAD-L] Permobil rear tires falling off

 

Derrick,

 

There are a few things I can direct you to ask the sales representative:

the C3 50 model has been in production for a number of years and is quite
stable. Generally Permobil manufacturers what I believe to be the best chair
on the market. Recently though, they have shipped the manufacturer of the
parts to China specifically, the motors. I would demand Swedish motors be
placed on your new wheelchair.

 

I had a C 500 RS unit for 14 months and had multiple problems with it. The
manufacturer stood by its warranty and I am now in a new C 500 ESP model. To
date, the only difficulty I have had was with the rear wheels coming off
their hubs. Supposedly, they have shipped me new rear tires on hubs that are
stiffer than the original defective ones. I would point out to the salesman
that you are aware of this problem and demand that the rear wheels on your
chair include the new "stiffer" rear wheel assemblies.

 

Getting parts and warranty items (two years on all chair parts) is not
difficult, and in fact I would rate the warrantee service excellent.

 

The battery charger is virtually silent, and charges half the time from the
old models. (I have owned five Permobil's to date).

 

The seating unit and tilt in space is fine. You are getting the seat riser,
If you are under 250 pounds you can get the option to raise your seat up 8
inches. The chair automatically restricts the motion of the chair to a
slower mode. I like this option very much, as it allows me to come to
"barstool" height and is great for reaching things.

 

Sorry, I don't know what you mean by "push handles" to bring yourself back
up. If I am reclined, the controller has an option that bends it parallel to
the armrest. This allows me to reach the controls even in a reclined
position.

 

I am very hard on my chairs. I am always out and about, and I am and avid
fishermen, fishing from a pier with railroad tracks.

 

I'd recommend that you get to see 350 given you take care of the concerns
listed above. Good luck

 

Don't let what you cannot do interfere with what you can do. 

 

Billy

 

 

 

 

From: Derrick [mailto:whe...@cvn.net] 
Sent: Thursday, September 23, 2010 3:28 PM
To: Billy Lang
Subject: Re: [QUAD-L] Permobil rear tires falling off

 

Billy,

My vendor is pushing the c-350 corpus &/or PS.

What problems have you had with your Permobil?

Has your tires been okay now?

 

Is it hard to get parts, warranty or other repairs?

Is the battery charger loud?

Any problems with seating or tilt? 

Any problems with metal shavings or bolts coming loose?

 

I have had Invacare power chairs since becoming a quad 14 years ago.

I am looking for a wheelchair that has push handles(these help me pull my
self  back if I fall over) and tilt/elevated seat.

 

Any advice on what to ask vendor/salesman?

Thanks

Derrick Winegardner c/5 in PA

 

Ps:If you reply to me, you might get a return spam message. Don't worry-I'll
get your reply.

- Original Message - 

From: Billy Lang <mailto:blan...@verizon.net>  

To: quad-list@eskimo.com 

Sent: Wednesday, September 01, 2010 1:50 PM

Subject: [QUAD-L] Permobil rear tires falling off

RE: [QUAD-L] I got an ipad Kindle

[Billy Lang]

 

Quadius,

 

I have owned the Kindle since they first came out. The new version is easier
to use. Because I've been reading screens most of my working life, I find
the Kindle is exceptionally easy to use and very quick to read. I'm a C5/6
and it takes longer for me to turn the page of a book than it does to read
it. I don't know if the new work version addressed this problem but I find
that the next page button is very sensitive and sometimes I skip one or two
pages. There's a previous page button to navigate back. This is a minor
drawback.

I highly recommend getting a Kindle. Even if you don't buy books from Amazon
there are plenty of free e-books available all over the web.

 

Kindle has a program which allows you to read Kindle books on your computer.

Oh, one other thing the "pages" of the books on the Kindle do not correspond
with the pages in a book. They use location numbers as reference points.. I
recommend using bookmarks to save locations within the books you're reading,
even though the Kindle will open the book you are reading to the last page
read.

 

 

From: Quadius [mailto:quad...@gmail.com] 
Sent: Tuesday, September 14, 2010 8:19 PM
To: quad-list
Subject: Re: [QUAD-L] I got an ipad

 

if anyone gets a chance, I would appreciate if you could take an
old-fashioned pencil with an array is her and see if the pages can be
manipulated with the pencil eraser.
I'm thinking about buying the Kindle because I primarily just read books.
If I want to read all the other items, I'll use my computer.



On Tue, Sep 14, 2010 at 6:10 PM, Don Price  wrote:

I played around with a friend's IPad and it seemed pretty quad friendly.  My
concern is that it would slide off my lap and hit the ground.  I don't know
how solid or shockproof they are.

 

I'm not sure what you mean by 'hold with one hand.'  The IPad is fairly
light and thin, but it would depend on what kind of hand function you have.

 

Don.

 

  _  

From: "ladyno...@aol.com" 
To: bobbie...@aol.com; quad-list@eskimo.com
Sent: Tue, September 14, 2010 2:55:28 PM
Subject: Re: [QUAD-L] I got an ipad


Is the iPad difficult to hold with one hand? I was thinking about getting
one, but I don't think I would be able to handle it with one hand. 

Have a Blessed Day, Naomi

 

-Original Message-
From: Bobbie299 
To: quad-list 
Sent: Sat, Sep 11, 2010 8:07 pm
Subject: [QUAD-L] I got an ipad

Hi all,

 I've been in bed the last two months, and I got an ipad. It is so very
easy to use in bed. Bobbie

 

[QUAD-L] Permobil rear tires falling off

[Billy Lang]

 

I have a year old C500 that had the two back tires come completely off their
split rims at different times. In each instance the chair was going over a
fairly wide track (one was a sliding door threshold, and the other was a
track for trains that was cut into the concrete.) The second time I was on
an isolated pier in 90° heat fishing. So the back of the chair was sitting
on the ground with the back tire lying beside it. 

 

Two weeks ago I obtained a brand-new C500 ESP S ( Enhanced Steering
Performance) unit. Once again, yesterday, the right rear tire came off its
rim.

 

Upon inspection, the inside of the tires which were supposed to contain
grooves for mounting on the split rim were worn completely smooth.

 

I have replaced both tires and rims on the new chair, hoping that this will
solve the problem.

 

I was wondering if anyone else using a Permobil of any model has had
problems with the rear wheels?

 

 

Don't let what you cannot do interfere with what you can do. 

 

Billy

[QUAD-L] Ampyra

[Billy Lang]

Hi Guys,

 

Has anyone on the list gotten approval for Ampyra (formally 4AP or
FRAMPRIDINE ) through their insurer? 

My insurer (CVS Caremark) has denied my doctors appeal for the drug by
stating it only has FDA approval for MS patients.

 

I previously trialed with the drug in 2003 with great success. My spasticity
was lowered, I gained movement in my thumbs and strength to my abdominal
muscles. There was also a lowering of pain in my shoulders and back.

 

I intend to appeal the denial on a humanitarian basis and it would help if I
could find another insurer who has approved the drug. Thanks.

 

Don't let what you cannot do interfere with what you can do. 

 

Billy

RE: [QUAD-L] EXPERT Mouse on WINDOWS 7

[Billy Lang]

 

I found these directions for Vista 64 bit. Install  Microsoft Intellipoint.

 

http://jeffhandley.com/archive/2007/12/18/kensington-expert-mouse-on-vista.a
spx

 

I'm using Intellimouse as the Device. (The Optical in the directions did not
work for me.)

 

Download the software from

http://www.highrez.co.uk/downloads/XMouseButtonControl.htm

 

Follow directions below for button assignments.

 

Sorry 4 any confusion.

 

Works on w7 laptop and desktop units. Can't find ANY Trackball like Expert
that works for me.

C5.

 

 

 

 

From: Derrick [mailto:whe...@cvn.net] 
Sent: Tuesday, August 03, 2010 1:38 PM
To: Billy Lang
Subject: Re: [QUAD-L] Mouse or track ball

 

Where did you go to set x-mouse driver?

Their webpage says that this software is not a driver.

- Original Message - 

From: Billy Lang <mailto:blan...@verizon.net>  

To: 'Derrick' <mailto:whe...@cvn.net>  ; quad-list@eskimo.com 

Sent: Tuesday, August 03, 2010 12:53 PM

Subject: RE: [QUAD-L] Mouse or track ball

 

I'm running Windows 7 64 bit ultimate. Did you choose Intellimouse as your
input device in the x-mouse driver setup? I program my buttons as follows:

 

Left Click {do not intercept}

Right Click {do not intercept}

Top Left {Left Click Hold Drag}

Top Right {double Click}

Scroll Wheel {Scoll Down Clockwise}

 

The only chink is pressing the left mouse boutton to long makes it act like
dragging, otherwise, works fine.

 

From: Derrick [mailto:whe...@cvn.net] 
Sent: Saturday, July 31, 2010 3:30 PM
To: Billy Lang
Subject: Re: [QUAD-L] Mouse or track ball

 

i have downloaded and cannot get it to work.

searched the forum too.

i have vista 32bit.

- Original Message - 

From: Billy Lang <mailto:blan...@verizon.net>  

To: 'Derrick' <mailto:whe...@cvn.net>  ; gah17...@aol.com ;
quad-list@eskimo.com 

Sent: Saturday, July 31, 2010 1:00 PM

Subject: RE: [QUAD-L] Mouse or track ball

 

Try x-mouse driver with kensington expert mouse. Works with windows 7 and
vista.(32 and 64 bit settings

 

 Assign buttons the same way by using Intelimouse settings. 

 

See:

 

http://www.highrez.co.uk/downloads/XMouseButtonControl.htm

 

From: Derrick [mailto:whe...@cvn.net] 
Sent: Friday, July 30, 2010 10:22 AM
To: gah17...@aol.com; quad-list@eskimo.com
Subject: Re: [QUAD-L] Mouse or track ball

 

kensington expert mouse with 4 buttons

but they do not have software for vista or windows 7.--yet

you can still use it for left & right click but it will not let you program
the other 2 buttons which I use for double click and drag

Derrick

- Original Message - 

From: gah17...@aol.com 

To: quad-list@eskimo.com 

Sent: Thursday, July 29, 2010 7:41 PM

Subject: [QUAD-L] Mouse or track ball

 

I'm looking for an easier mouse or track ball.  What do 

you use.

 


Glenn Henry

G.A.Henry Radio
100 Mill Street
Washington Boro, PA 17582

RE: [QUAD-L] Indwelling caths

[Billy Lang]

21 yrs with suprapubic.

First 9 years no UTIs.

Years 10 - 15 averaged 3 a year.

Years 16-21 Just one a year.

Last one a year ago and counting.

 

Learned to really committed to a strict regimine of care. 

Wash with soap and water every day and night by gloved caregiver. Then

Change Legbag to Overnight bag using Betadyne swabs on connectors

Drink plenty of water (avg 2 qts daily)

6 cranberry pills with Vitamin c (500m) taken with Cranberry Juice.

Change Cath every 30 days using Sterile Procedure .

 

Works for me

 

Don't let what you cannot do interfere with what you can do. 

 

Billy

.

 

From: DAVID LEWIS [mailto:curlyle...@verizon.net] 
Sent: Thursday, August 05, 2010 3:38 PM
To: quad-list@eskimo.com
Subject: [QUAD-L] Indwelling caths

 

How often do you guys with indwelling caths have  uti's?

 

Johnny

RE: [QUAD-L] Mouse or track ball

[Billy Lang]

I'm running Windows 7 64 bit ultimate. Did you choose Intellimouse as your
input device in the x-mouse driver setup? I program my buttons as follows:

 

Left Click {do not intercept}

Right Click {do not intercept}

Top Left {Left Click Hold Drag}

Top Right {double Click}

Scroll Wheel {Scoll Down Clockwise}

 

The only chink is pressing the left mouse boutton to long makes it act like
dragging, otherwise, works fine.

 

From: Derrick [mailto:whe...@cvn.net] 
Sent: Saturday, July 31, 2010 3:30 PM
To: Billy Lang
Subject: Re: [QUAD-L] Mouse or track ball

 

i have downloaded and cannot get it to work.

searched the forum too.

i have vista 32bit.

- Original Message - 

From: Billy Lang <mailto:blan...@verizon.net>  

To: 'Derrick' <mailto:whe...@cvn.net>  ; gah17...@aol.com ;
quad-list@eskimo.com 

Sent: Saturday, July 31, 2010 1:00 PM

Subject: RE: [QUAD-L] Mouse or track ball

 

Try x-mouse driver with kensington expert mouse. Works with windows 7 and
vista.(32 and 64 bit settings

 

 Assign buttons the same way by using Intelimouse settings. 

 

See:

 

http://www.highrez.co.uk/downloads/XMouseButtonControl.htm

 

From: Derrick [mailto:whe...@cvn.net] 
Sent: Friday, July 30, 2010 10:22 AM
To: gah17...@aol.com; quad-list@eskimo.com
Subject: Re: [QUAD-L] Mouse or track ball

 

kensington expert mouse with 4 buttons

but they do not have software for vista or windows 7.--yet

you can still use it for left & right click but it will not let you program
the other 2 buttons which I use for double click and drag

Derrick

- Original Message - 

From: gah17...@aol.com 

To: quad-list@eskimo.com 

Sent: Thursday, July 29, 2010 7:41 PM

Subject: [QUAD-L] Mouse or track ball

 

I'm looking for an easier mouse or track ball.  What do 

you use.

 


Glenn Henry

G.A.Henry Radio
100 Mill Street
Washington Boro, PA 17582

RE: [QUAD-L] Mouse or track ball

[Billy Lang]

Try x-mouse driver with kensington expert mouse. Works with windows 7 and
vista.(32 and 64 bit settings

 

 Assign buttons the same way by using Intelimouse settings. 

 

See:

 

http://www.highrez.co.uk/downloads/XMouseButtonControl.htm

 

From: Derrick [mailto:whe...@cvn.net] 
Sent: Friday, July 30, 2010 10:22 AM
To: gah17...@aol.com; quad-list@eskimo.com
Subject: Re: [QUAD-L] Mouse or track ball

 

kensington expert mouse with 4 buttons

but they do not have software for vista or windows 7.--yet

you can still use it for left & right click but it will not let you program
the other 2 buttons which I use for double click and drag

Derrick

- Original Message - 

From: gah17...@aol.com 

To: quad-list@eskimo.com 

Sent: Thursday, July 29, 2010 7:41 PM

Subject: [QUAD-L] Mouse or track ball

 

I'm looking for an easier mouse or track ball.  What do 

you use.

 


Glenn Henry

G.A.Henry Radio
100 Mill Street
Washington Boro, PA 17582

RE: [QUAD-L] 21st anniversary!

[Billy Lang]

Jim,

I will be 21 years as a c5/6 on July 8. You have made the time useful,
helping many along the way. 

 

*   Whoever destroys a soul, it is considered as if he destroyed an
entire world. And whoever saves a life, it is considered as if he saved an
entire world.

- Babylonian Talmud, Sanhedrin 4:8 (37a)

I have been enriched by your efforts, Jim. Live peacefully.

 

Don't let what you cannot do interfere with what you can do!

Bill Lang

www.langfoundation.org

 

 

 

From: Jim Lubin [mailto:jlu...@eskimo.com] 
Sent: Monday, May 31, 2010 2:51 PM
To: t crook; quad-list@eskimo.com
Subject: Re: [QUAD-L] 21st anniversary!

 

I'm pretty sure it was May '96. I was stuck in bed for 2 months waiting for
my wheelchair to get fixed when I started the list.

At 06:38 AM 5/31/2010, t crook wrote:



You have accomplished so much with so little function, it is nothing short
of amazing. Wishing you all of the health and happiness one could have.
Tim c5-c5, 21 yrs. post 
P.S. How long have you had the q-list? I have been on here since 92' or 93'.

http://www.whoopiekat.com/crockscrib/index.htm

--- On Mon, 5/17/10, Jim Lubin  wrote:

From: Jim Lubin 

Subject: [QUAD-L] 21st anniversary!

To: quad-list@eskimo.com, tmic-l...@eskimo.com, vent-us...@eskimo.com

Date: Monday, May 17, 2010, 4:13 PM

Today, May 17th, makes 21 years since I became a ventilator dependent
quadriplegic due to acute transverse myelitis. I was 21 when it happened so
it has now been half my life. I woke up that morning with a sore shoulder.
Thinking I just slept in a wrong position I went to work. After about 30
minutes the pain in my shoulder increased and I started feeling dizzy. I
tried to stand up but could not. Someone helped me lay down. In a short
amount of time I remember a paramedic asking me my age, I tried to answer
but could not talk. I found out I had stopped breathing. The next memory I
have is waking up in the hospital unable to move or speak. 

Transverse Myelitis is an inflammatory attack in the spinal cord. It is an
auto immune disorder where a persons own immune system mistakenly attacks
and destroys myelin, the insulating material that surrounds nerves. There is
no known cause or cure. It can happen to anyone at any age.


Jim Lubin   
jlu...@eskimo.com
http://makoa.org/jim 
disAbility Resources: http://www.makoa.org  
http://www.makoa.org/jlubin/charitybadge

RE: [QUAD-L] Permobil RS/ C500

[Billy Lang]

I have had numerous repairs done: motors, electrical etc.  This is my fourth 
permobil and it just seems the quality has really gone downhill. 

 

More importantly, I ordered this RS seating unit.  I have been using it for a 
year and since I have developed monumental lumbar problems.  Perhaps it is 
coincidental, but my discs are herniated and displaced, I have Arachnoitis and 
my T1 vertebrae is dangerously close to puncturing the main aortic artery.  I 
am 20 years post and the probability leans toward normal (abnormal?) aging as a 
C5 quad. All this started however,  when I got into this RS seating unit.

 

Permobil has stopped manufacturing this seating unit both here and in EUR. Just 
wanted to take a reality check.

 

 

From: airgant...@aim.com [mailto:airgant...@aim.com] 
Sent: Tuesday, June 15, 2010 6:48 PM
To: blan...@verizon.net
Subject: Re: [QUAD-L] Permobil RS/ C500

 

hello billy,

i have the c500, since 2005.  whats wrong?

 

 

 

 

-Original Message-
From: Billy Lang 
To: quad-list@eskimo.com
Sent: Tue, Jun 15, 2010 6:44 pm
Subject: [QUAD-L] Permobil RS/ C500


Hi Guys,


 

I’ve have a C500 Permobil with an RS seating system.  I was wondering if anyone 
on the list is currently using this unit,

(either RS seat or C500)?  I am having difficulties with both, after a year of 
use.

 

Don't let what you cannot do interfere with what you can do. 

 

Billy

[QUAD-L] Permobil RS/ C500

[Billy Lang]

Hi Guys,


 

I've have a C500 Permobil with an RS seating system.  I was wondering if
anyone on the list is currently using this unit,

(either RS seat or C500)?  I am having difficulties with both, after a year
of use.

 

Don't let what you cannot do interfere with what you can do. 

 

Billy

[QUAD-L] Medicare and supplies

[Billy Lang]

Can anyone tell me if Medicare covers supplies, and of what type?

Leg bags,  cath kits?
 
Don't let what you cannot do interfere with what you can do!

Billy

www.langfoundation.org

Re: [QUAD-L] About Cystomomy-thru Cystotomy tract

[Billy Lang]

Danny,

Forget the form, it's standard stuff. If you are exhibiting signs of a UTI, it 
could be caused by stones and a Cysto is the best diagnostics tool for them. If 
the stones are large enough, they can be removed, smaller can be blasted. But, 
you know that already.If you're not seeing signs of stones (Cath blockage, grit 
in the tube, etc.), suspect this Dr of putting you through the diagnostic 
procedure because he can.



If the Dr. is seeing more than one "colonizations" he should proscibe the right 
AB to knock them out. Doesn't he put you on a course of ABs before the 
procedure (5 days), only after you get a culture done?

I went 9 years w/o a UTI then got them like crazy after a Cysto. It didn't get 
better until I returned to what worked for me. My advice, if it ain't broke 
don't fix it. 

My suprapubic has been in for 20 years, and uti's are not that common. The 
procedure has always been:
Feel sick >>>>>>take an AntiBiotic that treats multiple coloninizations while 
culturing for 3 days>>>hope it's the right AB>>>>if so continue for 7 more 
days>>>>>if not take the AB indicated by the culture for 7-10 days.

BTW - I know within 48 hours if I'm taking the right AB. My symptoms don't get 
better.

Feel better



Don't let what you cannot do interfere with what you can do!

Billy

www.langfoundation.org





From: Danny Hearn 
To: quad-list@eskimo.com
Sent: Sun, February 14, 2010 2:02:45 PM
Subject: [QUAD-L] About Cystomomy-thru Cystotomy tract


Hi all-- i'm sure I have had a long going UTI--well my Doc does not want to do 
any cultures unles i'm deathly sickhe say's all supra-pubic wearers always 
have 2 or more colonizations in the bladder from bad bacteria anyway. He wants 
to do a Cystoscopy --- I don't know why because each of the past 2 years he 
went in looking for stones-and saw none. They want me to sign this form saying 
I am aware of risks of bleeding-infection-injury to bladder and 
uretha-anasthesia risks and other serious risks requiring further surguries.--- 
it also say's perform biopsies of bladder-remove clots and cauterize bleeding 
areas-THIS ALL SCARES ME AND MY WIFE.  We are wondering if we should 
change urologists once again(-we left the 1st urologist because he mostly 
did surguries and did not like follow up treatment for infections and etc.) Do 
any of you have an opinion on this?? I have not had any uti treatments or 
anti-biotics in over a year?  thanks for
 any input or thoughts on this,  DAN H>***

[QUAD-L] Avatar

[Billy Lang]

Went to see Avatar today (in 3-D). I was blown away.

For those of you who haven't seen it I highly recommend that you do. Without 
giving any of the plot away, for those of us who have seen it, I'm wondering if 
you had the same reaction of the first 10 Minutes of the movie that I did?

Grinning from ear to ear with the tear rolling down my cheek. 


Don't let what you cannot do interfere with what you can do!
 
Billy 
www.langfoundation.org

[QUAD-L] Hydration Solution

[Billy Lang]

For all of us who need to drink water all night in bed I have found a pretty 
good solution. I have slept with all kinds of combinations of plastic bottles 
in buckets with flexible straws, knocking them over. For 20 years I have slept 
in puddles or woken up my poor wife before I drown, always it seems at 2 AM.

The product called Hydrant
http://www.activemotionhealth.com/servlet/the-422/drinking-aid,-water-bottle/Detail

It hangs on the bed and if you have it above your head you just need to pinch 
the mouthpiece with your teeth to start the water flowing into your mouth. It 
stops when you let go.


Don't let what you cannot do interfere with what you can do!
 
Billy 
www.langfoundation.org

[QUAD-L] Expert Mouses (not Mice?)

[Billy Lang]

For all going to Windows 7, and have Kensington Expert Mouse. The driver is no 
longer supported,
I found one that works (32 & 64 bit) free at:
http://www.highrez.co.uk/


Don't let what you cannot do interfere with what you can do!

Billy

www.langfoundation.org

Re: [QUAD-L] Wheel chair - has anyone been able to get insurance to pay for electric and manual wheelchair?

[Billy Lang]

Better hurry - as written the new healthcare bill significantly reduces payment 
for these services. There are no clauses dealing with tramadic brain or sc 
injuries.

 
Don't let what you cannot do interfere with what you can do!

Billy

www.langfoundation.org





From: medethics Cvlrights 
To: Dan ; quad-list@eskimo.com
Cc: quad-list@eskimo.com
Sent: Mon, December 14, 2009 1:54:56 PM
Subject: Re: [QUAD-L] Wheel chair - has anyone been able to get insurance to 
pay for electric and manual wheelchair?


If I understand correctly, by design, Medicare is the primary and Medicaid 
would be secondary insurance in every state.  Medicare is federal and Medicaid 
state, so the federal benefits would take precedence. If I also read 
information on insurances correctly, it is allowable to have both a manual and 
powerchair chair  paid for by one or both within the 5 years. I have seen this 
happen for others.

I understand there is a process to go through. So if Medicare refuses, then 
Medicaid should or may pick up the tab. I believe it is often most effective to 
have his physiatrist or other medical doctor and PT fill out the forms and 
advocate on your behalf, or go through a wheelchair clinic.




From: Dan 
To: quad-list@eskimo.com
Sent: Mon, December 14, 2009 1:34:58 PM
Subject: Re: [QUAD-L] Wheel chair - has anyone been able to get insurance to 
pay for electric and manual wheelchair?

If one has Medicare, ie SSDI, and a private insurance which is primary? Does 
this vary by state?

Dan 

[QUAD-L] got a chair someone can use

[Billy Lang]

Guys,
I have a perfectly usable Permobil Chairman II with all the options (tilt in 
space, lay back, seat riser, etc.) It's got an 18" seatpan.
I used the chair for 2 years b4 going to a 2S model. It's been sitting in my 
garage as a backup and was only used three times while my 2s was being 
serviced. I'm in another new chair (C500 with RS seat) and I can't use 3 chairs.

It only needs batteries, rubber and 2 minor pieces to get road worthy. I'm in 
NJ and I'm looking for an individual who needs it as a primary, or an upgrade 
to what their in now. The chair was $25K new. I'm not looking for anything back.
Just want to see it goes to someone who really needs it.

Please reply to me onlyI don't want to clog the list 

Don't let what you cannot do interfere with what you can do!
 
Billy 
www.langfoundation.org

Re: [QUAD-L] NaturallySpeaking upgrade

[Billy Lang]

It works with preferred. you can get it for free.
  KnowBrainer 2008 Rev. C Released 
  Knowbrainer is pleased to announce the release of KnowBainer 2008, Rev C. 
Rev C of the groundbreaking KnowBrainer PC automation software is well tailored 
for all versions of NaturallySpeaking, including the latest Revision 10. With 
KnowBrainer, NaturallySpeaking's voice recognition capabilities is extended to 
complete PC automation, providing an un-matched voice-controlled PC experience. 
New in Rev C is powerful commands designed to enable Select-↦-Say in all 
programs, including EMR applications that are non-functional in all versions of 
NaturallySpeaking (other than Dragon Medical 10). While a sizeable amount of 
new commands have been added, here is a small sampling: 
a.. "Color [color]": font color commands for Word XP - 2007 and Outlook 
2007. 
b.. "Highlight [color]": will change the highlight color of any 
highlighted text to the desired color. 
c.. "Save JPEG": will save a picture of your current Window 
d.. "Capture Screen": will take a snapshot of your desktop 
e.. "Capture Window": will take a snapshot of the current Window 
f.. "Open Startup": open System Configuration Utility 
g.. Start Office Programs with simple commands like "Start Word" 
h.. Reintroduction of commands that formally produce double Windows 
i.. Numerous fixes, such as "Add to Vocabulary" command 
j.. "Fix Line": removes the unwanted extra space that appears before 
your first line of dictation when dictating in tables and cells 
k.. "Fix Paragraph": removes the unwanted extra space that appears 
before your first line of dictation when dictating in tables and cells 
l.. Spell Mode: prevents the DNS 10 spacing issue when dictating in 
Spell Mode 
 

Don't let what you cannot do interfere with what you can do!
 
Billy 
www.langfoundation.org

  - Original Message - 
  From: Quadius 
  To: quad-list 
  Sent: Wednesday, October 07, 2009 4:08 PM
  Subject: [QUAD-L] NaturallySpeaking upgrade


  Well, I just got off the phone with Nuance and they told me they could sell 
the version 10 professional upgrade for $200 instead of $300.  This is a bit 
steep if you ask me, so I guess I'll be waiting a little while.  I sadly missed 
the sale they had for about $150.

  Just thought you all might like to know.
  Remember, this is for the professional.  I also noticed a Matrix which 
compares all of the types of NaturallySpeaking.  I can probably get away with 
using NaturallySpeaking preferred because I don't even know how to write any of 
the complex macros to make things a lot quicker.  According to this matrix 
simple script commands (type e-mail address) would work.  This is primarily 
what I use, but I don't believe Knowbrainer software will work with preferred.

  Steve will know more about the subject than I do, so I will defer to him.
  Quadius
  http://www.nuance.com/naturallyspeaking/resources/product-comparison.asp

Re: [QUAD-L] permolock

[Billy Lang]

see below
Don't let what you cannot do interfere with what you can do!
 
Billy 
www.langfoundation.org

  - Original Message - 
  From: Merrill 
  To: quad-list@eskimo.com 
  Sent: Sunday, October 11, 2009 4:18 PM
  Subject: [QUAD-L] permolock


  Never heard or it.  Some power chairs are hard to fit if not impossible which 
I tend to think is what might be going on.  Ask another source to do it.

   


--

  From: Quadius [mailto:quad...@gmail.com] 
  Sent: Saturday, October 10, 2009 4:09 PM
  To: quad-list
  Subject: [QUAD-L] permolock

   

   I would like to hear from anyone having a permolock, but what I'm trying to 
find out is the following:
  Does this thing work well from the passenger side?  (The manager of the shop 
that has done my work tells me it is extremely difficult to get into, is this 
true?)
  Yes - there's very little clearance. I have a permolock on drivers side and 
it's really tight to get into. Braqun entervan. I have a new C500 with the new 
seating system  
  Does this system take the slack out of the suspension on the wheelchair? Yes, 
it locks it out.

  Is anyone using an ezlock with a Permobile?

  Just changed from EZlock (15 yrs), wanted the clearance on a new c500 with 
pin retract.
  If so, does the wheelchair bounce around a lot?

  No, the ride is a little bumpy.

  I presently have an ezlock already in my vehicle, but I don't want to install 
the bracket on the new wheelchair if I'd really don't want to use it later on.

  Yeah, had the same dilemma$3500 to buy and install. Make sure it fits! I 
can tell you it's REALLY tight. In fact, when I'm not driving, to get into the 
passenger seat I have to go up the ramp backwards! The lock prevents the chair 
from doing 360 turn inside the van. Once in, it works really well, so far.

  I look forward to your feedback.
  Quadius
  PS I'm still waiting on some modifications to my wheelchair, but I am hopeful 
I will have it shortly.  I know it's taken an unbelievably long time, but there 
have been so many things go wrong with the process but I think it can only be 
my bad luck.

Re: [QUAD-L] Prialt

[Billy Lang]

Hi,
I'm back from getting the Prialt med injected into my spine.  I was pain-free 
an hour after the procedure for the first time since May. 
I'm had these side effects after the Prialt and the procedure:

Had spinal cord headache 1 hour post procedure took Fiorocet, headache did not 
return. Dr. Kaufman attributed this to the amount of scar tissue present and 
the needle size he used to deliver the Prialt. It may have caused a leakage.

At home (7:30) upon waking in the chair after a 30 minute nap and for the next 
hour experienced uncontrolable chills, and halucinations. The halucinations 
lasted 15 minutes. Administered Clonazepam (0.5), no effect.

Went down to bed and each time (2) that I awoke from sleep some symptoms would 
return.  The first awakening I began to talk incoherently. After about an hour 
I was fine (still pain free). The second awakening was triggered by my PTSD, 
the episode was short, and I laid awake until 11:30 PM when the pain began 
returning and I took a Percoset. The rest of the evening was uneventful.

Conjecture - could above be withdrawal effects from opiates? No Percoset for 26 
hours?

So, Prialt effectiveness:

Wearing Fentenol patch (75)

Last oral pain med 9:00 pm prior evening, nothing after (in order to check the 
effectiveness of Prialt). 

Prialt Administered 8:00 AM . Pain free.

11:30 PM pain returned to the point were Percocet was administered. (total 15 
hours 30 minutes).

Dr. Kaufman has suggested a second trial at a lower dose may yield more 
positive results, given the positive effects of the Prialt. He suggested we 
wait a few weeks for the results of our Lyrica application to the pain med mix. 
(as suggested by Dr. Lam and Dr. Kirshblum).   He also stated that the only 
goal in this excercise is to return my quality of life, which was appreciated.

I'm of a mind that a second trial is absolutely worth the effort. Given my 
aversion to opiates and the fact that I have never taken them for any prolonged 
period, I believe the withdrawal had to have some mitigating effect. 
Additionally, chills and other ancillary negative (PTSD) results might be 
attributable to the trauma of the procedure. I've experienced the before during 
UTIs and bowel problems.

So, assuming the Prialt delivers dosages with the Medtronic pump enough to 
cover a 24 hour period, I won't need anything else. If I do, Lyrica seems like 
the best non opiate candidate as an add-on for controlling the rest of the 
pain. 

I've put off ordering the S. American poison frog (Phyllobates terribilis) for 
now. Let's get the snails to work. Thanks everyone for your efforts on my 
behalf. 

Thanks Corie,

Don't let what you cannot do interfere with what you can do!
 
Billy 

Don't let what you cannot do interfere with what you can do!
 
Billy 
www.langfoundation.org

  - Original Message - 
  From: Corie Jones 
  To: quad-list 
  Sent: Saturday, October 03, 2009 12:43 AM
  Subject: Re: [QUAD-L] Prialt


  Hi Billy,

  I just wanted to briefly give you my experience with trying Prialt in my 
baclofen pump.  I actually had the baclofen pump surgery done to try 
intrathecal medication because I have tried practically everything 
medication-wise out there for the severe, nerve pain I have been living with 
for 16 years.  I got very tired of trying medication after medication and 
dealing with all of the side effects.  So my pain management doctor recommended 
trying the baclofen pump and having anesthesia type medication with the 
baclofen in the pump to see if it would decrease my nerve pain.  I cannot 
remember the name of the first medication I tried, but it did not help.  So 
after a couple of years thinking about the prialt and desperate to get pain 
relief, decided to try it in my pump.  Through the pump, they start with a very 
very low dosage to try and bypass any side effects, which sounded kind of scary 
(vision problems, memory problems), so anyway I was never able to get up to the 
full therapeutic dosage my doctor thought would work for me because I had a 
different side effect of severe constipation when using the prialt.  My doctor 
tried to tell me it wasn't from the prialt but that's the only thing it could 
have been because that was the only thing I was doing different.  So knowing 
that I was going to have to continue to go up on the dosage, I opted to 
discontinue it.  I never got any relief from it on the low dosages I was on.  I 
was very disappointed.  I had such high hopes that this medication would be the 
answer to my prayers to give me pain relief.  It may have if I could have stuck 
it out, but I just could not do it.  So I didn't get the typical side effects, 
but still a side effect I could not tolerate unfortunately.

  I wanted to share my story, not to discourage you from trying the medication, 
but to give you my experience just in case you have similar problems with the 
prialt.  And I really hope it

Re: [QUAD-L] Prialt

[Billy Lang]

Hi David - my experience hope it helps. (I was not going to any opiate solution 
(pump or oral, unless it was last resort).
Look into this for yourself

Hi, It's 4:00 PM and I'm back from getting the Prialt med injected into my 
spine. Other than a spinal cord headache caused by leakage of the needle that 
had to go through a lot of scar tissue at the base of the spine, the procedure 
went fine. I was pain-free an hour after the procedure for the first time since 
May. I am still at a tolerable level of pain now, even after an hour ride as a 
passenger in my van going over bumpy roads. I haven't had any opiate pain 
medication since 9 PM last night. I'm still wearing a Fentanyl patch (75). 
Dr. Kaufman was pleased with the results and we now have another option (a very 
good one) to evaluate in our pain management plan.

He suggested we wait a few weeks for the results of our Lyrica application to 
the pain med mix. The combination of medications that work for me is strictly 
up to me to decide. I am hoping we can a solution without opiates. (OxyContin, 
oxycodone, Fentanyl, Morphin, neurontin, Darvecet)

So, assuming the Prialt delivers dosages with the Medtronic pump enough to 
cover a 24 hour period, I won't need anything else. If I do, Lyrica seems like 
the best choice as an add-on for controlling the rest of the pain. 

Although these drugs are developed for other maladies (Prialt for MS and Lyrica 
for fibromyalgia) they are effective at certain dosages for the relief of 
neurogenic pain. I still may wind up with some opiates, but not near as many 
that would cause me to drool on my shoes.

For the first time since May, I'm encouraged that we have finally found our way 
through this maze of Pain Management drug applications.

I'm having no side effects from the Prialt, and it seems to be working fine for 
me.

Thanks for the prayers - they work!



Don't let what you cannot do interfere with what you can do!
 
Billy 
www.langfoundation.org

  ----- Original Message - 
  From: Billy Lang 
  To: jamus ; Bud ; Tim Lang ; Lang, Matthew D ; Lang, Sean [PVTC] ; Gerard 
Lang ; Donna ; grace...@hotmail.com ; raybud...@aol.com 
  Sent: Friday, September 18, 2009 9:17 PM
  Subject: update on me


  Hi guys,

  Thought I would drop a note to let you know it's going on with me. Helps that 
I don't have to repeat it 10 times.

  I started developing pains in my lower back and hip in May. At the time they 
thought my hips were breaking down from 20 years in the chair. They describe 
pain medications and started me on the road to pain management.

  A few weeks went by and the pain came through the medications. The pain was 
pretty intense, measured on a scale of 1 to 10 as a 10. This put me into 
dysreflexia and off the ER I went.

  After they administered Delauded by IV, to alleviate the pain, The doctors 
there spoke with my Kessler doctors and decided to do a x-ray and bone scan of 
the right hip. Turns out, my hip is fine, showing no stress fractures or 
abnormalities other than moderate to severe arthritis.

  The x-ray of the lower spine (lumbar region) was another story, and they sent 
me home with OxyContin, and oxycodone.

  Before I could return to Kessler, the pain returned although the pain 
medications were being taken as prescribed. Back to the ER. Dr. there decided 
with Kessler collaboration to put me on a pain medication patch and use the 
other pain medicines as an adjunct. The pain returned after a week.

  Before going back to Kessler I had an MRI of my lumbar sacral spine resulting 
in:

  L1 -2: there is a right lateral posterior situation with this material which 
is encroaching on the right nerve root sleeve. There is this disc herniation. 
(The diagnostician erroneously reported that I had a laminectomy at this level. 
Never had it just looked that way on the films.)

  I have arachnoidtis from L4-5 and l5-s1 Levels. This is a bundling of nerve 
roots being compressed by bone and causing the pain.

  Kessler adjusted the meds and recommended that I see a neurosurgeon who 
specializes in solving this kind of problem. That neurosurgeon was on vacation 
and not available for three weeks.

  Saw his associate and he recommended simulation device which would be 
implanted in my lower spine and intercept the pain impulses and fool the brain 
into believing it's something else (like a low pulse).

  He sent me to a pain management doctor specializes in testing the stimulation 
solution. Upon looking at the MRI, Dr. Kaufman decided I was not a candidate 
for the neurosurgeon's recommendation. He did however offer a radical approach 
to manage the pain. At this juncture I've been told there are no surgical only 
solutions (like cutting the nerves).

  He wants to test me for implementation of a Medtronic pump with Prialt.

  http://www.prialt.com/Images/Whatyoushouldknow.pdf

  Dr. Kaufman was upfront with me. He said I would

[QUAD-L] Prialt

[Billy Lang]

Tomorrow, I am going to a test to see if Prialt delivered through a pump 
directly to my spine will alleviate my pain.

http://www.prialt.com/

After 20 years in the chair I am suffering from herniated discs in my lumbar 
and arachnoidtis. I have yet to find a combination of opiates (oxycodone, 
OxyContin, patches, Lyrica, etc.).

The drug has had some positive effects on MS patients. I am told that I will be 
the first quadriplegic to test the drug's effectiveness.

I'll let you know how it turns out.

Don't let what you cannot do interfere with what you can do!
 
Billy 
www.langfoundation.org

Re: [QUAD-L] Dragon professional 10

[Billy Lang]

try Knowbrainer:

http://www.knowbrainer.com/ShopOnline/files/What_is_KnowBrainer.pdf



They package voice macros for complete hands free by voice.
supposedly works with Preferred v10.

Get it for free:

http://www.knowbrainer.com/downloads/KnowBrainer_Physically_Challenged_Form.rtf


Don't let what you cannot do interfere with what you can do!
 
Billy 
www.langfoundation.org



Don't let what you cannot do interfere with what you can do!
 
Billy 
www.langfoundation.org

  - Original Message - 
  From: ladyno...@aol.com 
  To: steve.olda...@comcast.net ; quad-list@eskimo.com 
  Sent: Sunday, September 13, 2009 5:34 PM
  Subject: Re: [QUAD-L] Dragon professional 10


  Steve, what are scripts and macro?  And how would they benefit me?
  Have a great summer!
  God bless you, Naomi 

  In a message dated 9/13/2009 2:18:05 P.M. Eastern Daylight Time, 
steve.olda...@comcast.net writes:
 
Yes, Professional lets you create custom commands through scripts and 
macros. The Preferred and Standard editions do not provide this. These custom 
commands can be very useful and time saving.

 

Steve - C4, 21 years

 

From: Steve Crowder [mailto:dangerwo...@san.rr.com] 
Sent: Sunday, September 13, 2009 2:07 PM
To: daa...@aol.com; quad-list@eskimo.com
Subject: Re: [QUAD-L] Dragon professional 10

 

I use Dragon 10 preferred with Windows XP and it works great. Is there much 
difference between preferred and professional?

 

Nick

  - Original Message - 

  From: daa...@aol.com 

  To: quad-list@eskimo.com 

  Sent: Sunday, September 13, 2009 9:28 AM

  Subject: [QUAD-L] Dragon professional 10

   

  Is anyone using Dragon professional 10?  Does it work better with Vista 
and Dragon professional 9 or 9.5.
  It takes a lot of time to mouse grid to do anything in Vista.  I like 
some of the features of Vista, but not that one.  On Dragon nine it seem to 
already know most of the commands.

   

  I know some one out there has figured that out.
  Thank you
  Dana



--

[QUAD-L] Medtronic Spinal Cord Stimulation

[Billy Lang]

Anybody using this for chronic pain relief? I'm entering a test phase and would 
really like some feedback.
thx

Don't let what you cannot do interfere with what you can do!
 
Billy 
www.langfoundation.org

[QUAD-L] Permolock

[Billy Lang]

Anybody driving with a Permolock lock down? They have one where the post on the 
chair is on a plunger that recedes into the c500 model. It gives you back the 
3" that ezlock takes away with their post.

I'm seriuosly thinking of changing over...how's the reliability?

thanks

Don't let what you cannot do interfere with what you can do!

Billy 
www.langfoundation.org

Re: [QUAD-L] Bone Scans ?? DEXA Scores

[Billy Lang]

The last time the cortisone worked for about six weeks. This shots are 
comprised of cortisone, a numbing agent and a Steroid.

Thanks for the advice.

Don't let what you cannot do interfere with what you can do!

Billy 
www.langfoundation.org
  - Original Message - 
  From: daa...@aol.com 
  To: sant...@cox.net ; quad-list@eskimo.com 
  Sent: Monday, May 04, 2009 2:08 AM
  Subject: Re: [QUAD-L] Bone Scans ?? DEXA Scores


  Hi Todd,

  I have a low bone density also.  I first took Fosamax, then I  broke the top 
of my femur from an aide stretching my leg out too far during therapy.  I then 
broke my humorous when my aid tripped on my dog's steps and fell on me in the 
waterbed on my arm.  I think my waterbed was helpful.  My  doctor then put me 
on to forteo daily injections.  My score has improved, but still low.  I have 
never asked what the score was, I will have to do that.  I don't get another 
one until next year, every two years.

  I feel my waterbed is helpful for pain relief, although I still have problems 
like you, not sleeping for long periods at night, usually five hours..  I can 
stay all night on one side, but only a couple hours on the other side, because 
of pain.  I don't think I could stand a half an hour on a regular bed.  I never 
have problems with pressure sores, because of the waterbed.

  How long will the cortisone shots provide relief?  Sorry about your pain.  
The reply was to Todd but Billy was at the end of the letter.  I may have 
addressed the wrong person.
  Dana
  I saw the doctor yesterday about pains in my shoulders and hips. The pains 
are infringing on my quality of life, after 20 years in the chair but doctors 
say there's nothing they can do. I'm averaging about three hours a night's 
sleep. Seems the joints are all bone on bone in both shoulders caused by using 
muscles to compensate for movement in ways the joints were not designed. My 
hips have stress fractures, causing that pain.

  So, it's pain meds for me. I don't like taking them because they turn my 
brain to mush.



  So, I have some questions for the group:

  Is there anyway to replace fluid in the joints?

  Are there any pain meds out there without the harsh side effects?

  Will a foam memory mattress provide some relief in sleeping on a bad hip?

  The doctors injected cortisone in both shoulders to give me some temporary 
relief.

  Any suggestions would be welcome.





  Don't let what you cannot do interfere with what you can do!
   
  Billy 
  www.langfoundation.org


--
  2009 3 Free CREDIT SCORES: See Your 3 Credit Scores from All 3 Bureaus FREE!

[QUAD-L] Re: bone on bone

[Billy Lang]

Bone scans only show it's getting worse (especially in the hips, with stress 
fractures). BTW I'm C5 and very active. I fish for Stripe Bass, Fluke and 
other species 3 nights a week. Getting so I'm needing more help landing 
fish, and paying a hefty price via pain residually.


It's raining today, so the neck and traps are being heard from. Just wish 
there were pain meds that would allow me not to drool on my quad belly. 
Seems, on me anyway, the meds help but the time takes longer. It's like you 
think an hour has passed but it's only been ten minutes. Nice way to prolong 
your life perceptionally.


I'm in NJ and the Medical Marijuana act is going to pass. I'll set up a 
distributorship and be my own customer.


Anyone sleeping on a foam memory mattress? I have a 4 inch topper and it 
helps. I'm thinking of getting a full foam model/



Don't let what you cannot do interfere with what you can do!

Billy
www.langfoundation.org
- Original Message - 
From: "Tod E. Santee" 

To: ; "Daniel Espinoza" 
Sent: Saturday, May 02, 2009 6:18 PM
Subject: RE: [QUAD-L] Bone Scans ?? DEXA Scores


Hey Danny... I'm kinda just asking to get an unscientific reference point. 
I wouldn't be "scared."  I'm old we quads do a huge bit of "calcium 
dumping" almost immediately after our injuries.  And apparently, only 
immediate, agressive therapies do much.


Standing frames do a little but notmuch to regain bone... only to slow the 
loss.  I've been told even that isn't enough.  You'd need continuous 
movement... like e-stim machines and bikes and so on.  And it would have 
to be continued.


As for bone density, if Gary Rock, a six years, has similar scores to me 
at 25 years... it's probably nothing more than a glimpse into your future 
(or, who knows... maybe you're already there).


Best wishes,
--Tod

 Daniel Espinoza  wrote:
That scares me as I am still waiting on my chair and am mostly bed 
bound Wouldn't a standing machine help?


Danny Espinoza 26/m/California

Occupation before accident
Network engineer / SR. Network security engineer What happened:
Broke c2,c6,c7 with donor bone at c2
Traumatic brain injury from blood going to central cortex from spinal 
cord not vent dependendent anymore. :]


My myspace address - http://www.myspace.com/dannylnx
My spinal cord injury support website - http://spinalcordinjured.net/



-Original Message-
From: Tod E. Santee [mailto:sant...@cox.net]
Sent: Saturday, May 02, 2009 1:07 PM
To: quad-list@eskimo.com
Subject: [QUAD-L] Bone Scans ?? DEXA Scores

i haven't *quite* had the same issues with bone the Billy and Merril are 
mentioning ... BUT...


I'm wondering if anybody here has had a DEXA Scan recently (or ever) to 
test bone density.


I had it done 3 years ago and had pretty bad bone loss -- as expected.  I 
started Fosamax thinking it would help but couldn't take it for 9-10 
months while I was on bedrest after my surgeries last year.


Since then I took it for another year and had another scan just a week or 
two ago.  My scores were the same or worse in most cases!


I don't know if it's the Fosamax not working -OR- if the time on bed rest 
un-did any benefits I might have had from the Fosamax in the first place.


I'm just curious how anybody here scored.  I had areas ranging from -1.7 
to -3.5 (none in the + side!).


Best wishes!
--Tod

[QUAD-L] Bone on Bone

[Billy Lang]

I saw the doctor yesterday about pains in my shoulders and hips. The pains are 
infringing on my quality of life, after 20 years in the chair but doctors say 
there's nothing they can do. I'm averaging about three hours a night's sleep. 
Seems the joints are all bone on bone in both shoulders caused by using muscles 
to compensate for movement in ways the joints were not designed. My hips have 
stress fractures, causing that pain.

So, it's pain meds for me. I don't like taking them because they turn my brain 
to mush.

So, I have some questions for the group:

Is there anyway to replace fluid in the joints?

Are there any pain meds out there without the harsh side effects?

Will a foam memory mattress provide some relief in sleeping on a bad hip?

The doctors injected cortisone in both shoulders to give me some temporary 
relief.

Any suggestions would be welcome.





Don't let what you cannot do interfere with what you can do!

Billy 
www.langfoundation.org

[QUAD-L] SCI Bible

[Billy Lang]

Craig Hospital publishes a SCI Injury Hand book that covers just about 
everything in quad care.
It's the most definitive reference I've found for us. (I still reference it 
after 20 yrs.).  It's kept up to date, by Craig staff and is available for 
download (6mb) to Craig Alumni at: MyCraig.org. 


Don't let what you cannot do interfere with what you can do!

Billy 
www.langfoundation.org

Re: [QUAD-L] It's not worth it- just ask Johnnie Appleseed

[Billy Lang]

In my 20 years of SCIsm (15? or so on Jimmy's List), no one subject than 
parking elicits more anger, angst and replies.
Here in NJ we have placards, id cards, plates and those innocuous hanger 
thingies from the rear view mirror.
NOTHING WORKS better than calling a cop. If you're parked in, stuck or have 
time to wait around for a police response, I suggest that's the thing to do.

Otherwise, save your energy for the real challenges. Ignorant people aren't 
worth the spit. 

Don't let what you cannot do interfere with what you can do!

Billy 
www.langfoundation.org
  - Original Message - 
  From: wheelch...@aol.com 
  To: quad-list@eskimo.com 
  Sent: Thursday, January 29, 2009 11:11 AM
  Subject: [QUAD-L] It's not worth it- just ask Johnnie Appleseed


  Is it really worth the effort?? Just ask Johnnie Appleseed.

  My point is that you will never know the results of all of your efforts.  
Often, it only takes one success to motivate others to fend for themselves 
based on your success or failure.  But it has to start somewhere and with 
someone.  Think of all those apple trees that sprouted for decades because 
someone cared and planted the first seed.

  Think of our world if people like Justin Dart was passive or Ed Robert's 
thought... let the next person do it.
  Remember you have the law on your side.  Use it.

  Best Wishes

  In a message dated 1/29/2009 9:34:52 A.M. Central Standard Time, 
sant...@cox.net writes:
I agree fighting for spots *can* seem worthless at times, too, because in 
most cases those who abuse it simply don't care and feel that even if they get 
caught and/or ticketed once, the cdhance vof it happening again is extremely 
slim... like lightning striking your car twice.




--
  A Good Credit Score is 700 or Above. See yours in just 2 easy steps!

[QUAD-L] Permobil RS

[Billy Lang]

Anyone have Permobil's RS seating system? Thinking of getting one, need input. 
Thanks.
Don't let what you cannot do interfere with what you can do!

Billy 
www.langfoundation.org