Re: [QUAD-L] follow-up on community transport
I am sorry, I missed the initial post but as it works here, they need a days notice. They do severely take advantage financially of the disabled. We have to pay twice the amount as the regular bus riders that go to the stop and have to pay extra if we live more than a mile from the closest bus station. That service hasnt always been here. We had medical assistance transportation that was for people that were on medical assistance and they need two days notice. The public transportation first led me to believe it was for school and the doctors until I pushed forward. I have posted about them before how they took advantage and treated me badly. I ended up calling the director for the 3 counties of the transportation department and found out a whole new big story. I complained of one thing, then they picked on me for another until I went to the top. It's like they were trying to make me miserable for complaining to begin with. First I complained about being treated badly. I had an eye appt at the wal mart 40 miles away because the one down the street doesnt have an eye center and then had to go take an exam for an online class I was taking in the same area. The driver though I was going down the street. The person that takes the calls for my area said I told her I was going to the wal mart around the corner and if I didn't have the money, dont take me. After that, they tried to say I lived more than a mile from a stop. I actually live 3/4 a mile from the stop. She said she went by map quest. I did as well and got different results. After I got that straight, I was getting forgotton. Not picked up or left waiting long periods of time. Thank God, I drive now and don't have to deal with them. Keep on pushing them, Stacy - Original Message - From: Bill_J To: Austin ; quad-list@eskimo.com Sent: Monday, July 17, 2006 4:33 PM Subject: Re: [QUAD-L] follow-up on community transport Keep on them, Austin. They can't deny you transportation for regular doctors appointments, school, work and shopping for groceries at least once a week. Write your congressional representatives at the state and federal levels a cc the letters to a few investigative reporters at local TV stations. That should get action. I'd like to see the email, please. Bill age 55C6 Incomplete since 7/20/68Leesburg, FLI personally don't mind growing old, but my body's taking it badly. - Original Message - From: Austin To: Quad-L Sent: Monday, July 17, 2006 4:01 PM Subject: [QUAD-L] follow-up on community transport Hello to everyoneThanks for all the feedback I was unable to contact someone with the community transport and we had a lively conversation about rules and how they applied. An appeal of my the denial was graciously schedule.The meeting was scheduled for 9 a.m. well as we all know we are up and ready by that time. My aide doesn't arrive until 830. This was so nice of them. I had someone represent me and present my case.This benevolent organization sent me a letter which stated I was approved for "medical trips only"this prompted another call for clarification. This approval is for medical emergency's only.The following morning I made a telephone call to the State Director of transportation and then followed up with an e-mail. Another call was made to the governors office along with an e-mail.Both offices seemed very interested in this situation and assured me someone would be contacting me. I hope something good comes from this.If anyone would like to see the e-mail I sent. E-mail me.AustinC4-5 1998
[QUAD-L] Big favor and question-----please
I was asked to speak in front of our transportation board which is Metro. Which does not only our transportation but fixes our sidewalks which are also horrible here . Which is Houston, Tx. It's for everyone here in our Apartment Complex ( it's for the Elderly and Disabled.) I've never done well speaking in front of a group of people, but I know this will help us alot. I will only have 3 minutes to speak so I have to get to the point fast.I only have to do this this thursday.I just found out today (which is Tuesday) My Question is How do I begin my speech and how do I get over the nervousness? I'd appreciate any input or any kind of help I can getThank you in advanced I know all ya'll have good heads on ya'lls shoulders... Gina
Re: [QUAD-L] Google Earth
This one uses 2006 maps http://local.live.com/ Stunt Others http://mapping.usgs.gov/ http://glovis.usgs.gov/ On 7/17/06, [EMAIL PROTECTED] <[EMAIL PROTECTED]> wrote: Lori, right after you downloaded that stuff, we sold it to North Korea for some type of new program they were working on. Years later, we discovered that its being used for their missle tracking systems. They got such a deal! W In a message dated 7/17/2006 4:59:05 PM Central Daylight Time, [EMAIL PROTECTED] writes: The data we have is three years old but that is okay. The only fault with Google Earth [and we have written to them to complain] is that sometimes an address can be three or four or five houses OFF. With today's technology they should be able to be more precise with the location. Especially pointing out a house in certain neighborhoods that have been there for awhile.
Re: [QUAD-L] About therapy
Check out the lab results being done a Purdue University in West Lafayette,IN in Vet School with dogs. Compare that which is being done in rat labs all over the country. Its promising. However, the closest DNA to man is the mouse. Keep your eye on what is happening with mice. 20 more years. W In a message dated 7/18/2006 7:06:56 PM Central Daylight Time, [EMAIL PROTECTED] writes: About 20 years ago, someone asked me if they had to completely cut my cord to insert 'something' that might (50/50) make it grow back completely, would I do it. The answer was a resounding NO. I'm not sure I'd even try at 90/10 or 95/5. The thought of NOTHING is to much for me to even toy with. Anyone here take any of these odds? O'C ( too many Daves here - I'll be O'C)
Re: [QUAD-L] About therapy
About 20 years ago, someone asked me if they had to completely cut my cord to insert 'something' that might (50/50) make it grow back completely, would I do it. The answer was a resounding NO. I'm not sure I'd even try at 90/10 or 95/5. The thought of NOTHING is to much for me to even toy with. Anyone here take any of these odds? O'C ( too many Daves here - I'll be O'C) In a message dated 7/18/2006 4:32:59 P.M. US Mountain Standard Time, [EMAIL PROTECTED] writes: Hi, Ive been a c7 quad for 9 years, 7 of those I have do 3 hours therapy every tues and thurs. Im strong as hell, but Im not going to walk away, at least anytime soon. If I had the chance for stem cells or any possible therapy to get on my feet or better myself I would take it. I would work 24 hours a day if I thought I could get better. But the truth is stem cells are many years away from helping any of us old time quads. Its going to help the freshly injured way b4 it helps us. Another fact is people that have healthy families dont care about paralyzed individuals, and many of them feel we brought this on ourselves or werent right with god. So enjoy the small things we have left and build on them. Dont get caught up in the hope game, give yourself the best life you can by getting out there and doing something to make you feel worthwhile. If a cure comes..youll hear about it. Remember noone gets out of here alive, and the so called able bodied are only that way for a time. Everything has a duration period. Even the most gorgeous blonde will dry up and get old. We are all equals and deserve to live and enjoy life, get out and demand yours. Dont let any red tape or bad attitudes stop you. Ron c7 Dave www.daveoconnell.com c3-inc-1967
Re: [QUAD-L] I Wonder Why
Hi Sandy, No problem. "Peace," to me, means no flaming each others' posts. "We" were the ones writing the flaming posts to each other that were not advancing the issue of stem cells eithher way, but were the same statements made back and forth to each other. As I said, you are welcome to read the archived posts, and are welcome to make any comments that you want to, about them or any other issue you desire. I don't see how that would either offend anyone or keep you from discussing anything that you thought was important to you. This is a "big tent" List, so feel free to discuss whatever you want. With Love, CtrlAltDel aka DaveC4/5 Complete - 30 Years PostTexas, USA[EMAIL PROTECTED] wrote: Dave, you said "For the sake of peace on the List, we have put the issue to rest in our posts for now". Maybe you can explain that. What "peace"? And who are "we"? Personally I would rather talk about stem cells and other issues pertinent to quads than Walmart. Maybe I'm at the wrong place. Tell me and I will leave. Sorry if I offended anyone by talking about something I thought was important to us. Sandy
Re: [QUAD-L] About therapy
You are, my friend, most correct. Hope that by now you have bump'd into Houston in St. Louis. Haven't seen him post since he said that he was going to start PT. Best Wishes W In a message dated 7/18/2006 6:32:59 PM Central Daylight Time, [EMAIL PROTECTED] writes: So enjoy the small things we have left and build on them. Dont get caught up in the hope game, give yourself the best life you can by getting out there and doing something to make you feel worthwhile. If a cure comes..youll hear about it. Remember noone gets out of here alive, and the so called able bodied are only that way for a time. Everything has a duration period. Even the most gorgeous blonde will dry up and get old. We are all equals and deserve to live and enjoy life, get out and demand yours. Dont let any red tape or bad attitudes stop you. Ron c7
[QUAD-L] About therapy
Hi, Ive been a c7 quad for 9 years, 7 of those I have do 3 hours therapy every tues and thurs. Im strong as hell, but Im not going to walk away, at least anytime soon. If I had the chance for stem cells or any possible therapy to get on my feet or better myself I would take it. I would work 24 hours a day if I thought I could get better. But the truth is stem cells are many years away from helping any of us old time quads. Its going to help the freshly injured way b4 it helps us. Another fact is people that have healthy families dont care about paralyzed individuals, and many of them feel we brought this on ourselves or werent right with god. So enjoy the small things we have left and build on them. Dont get caught up in the hope game, give yourself the best life you can by getting out there and doing something to make you feel worthwhile. If a cure comes..youll hear about it. Remember noone gets out of here alive, and the so called able bodied are only that way for a time. Everything has a duration period. Even the most gorgeous blonde will dry up and get old. We are all equals and deserve to live and enjoy life, get out and demand yours. Dont let any red tape or bad attitudes stop you. Ron c7
Re: [QUAD-L] I Wonder Why
This forum is and will remain an open forum, inspite of people like me and my brother from a different mother, (Dave) lol. Your feelings on stem cell are good and should be discussed. Dave, on the other hand, seems to like that cartoon that dresses up like "Zorro" cutting prices daily. Bring on the politics, religion and the color of your last bowel movement. We all have much to learn..from others. W In a message dated 7/18/2006 4:43:53 PM Central Daylight Time, [EMAIL PROTECTED] writes: Dave, you said "For the sake of peace on the List, we have put the issue to rest in our posts for now". Maybe you can explain that. What "peace"? And who are "we"? Personally I would rather talk about stem cells and other issues pertinent to quads than Walmart. Maybe I'm at the wrong place. Tell me and I will leave. Sorry if I offended anyone by talking about something I thought was important to us. Sandy
Re: [QUAD-L] HR 810
In a message dated 7/18/2006 4:21:06 PM Central Daylight Time, [EMAIL PROTECTED] writes: Hey People, Great news people HR 810 passed! Now we know where Americans stand so let's see if GW is going to Veto our hopes. Which he will. Mark Georgie Boy, isn't that smart. He has experts. Those experts advised him about those WMDs and several other major events that made Georgie Boy, look like an idiot. The Don, Donald Trump, has his own ways of rewarding expert advise that doesn't work ,... "Your Fired" Let's All Pray! W
Re: [QUAD-L] I Wonder Why
Dave, you said "For the sake of peace on the List, we have put the issue to rest in our posts for now". Maybe you can explain that. What "peace"? And who are "we"? Personally I would rather talk about stem cells and other issues pertinent to quads than Walmart. Maybe I'm at the wrong place. Tell me and I will leave. Sorry if I offended anyone by talking about something I thought was important to us. Sandy
Re: [QUAD-L]
Hi Carol, You are a fully subscribed member. Pull up a chair and join the discussion. With Love, CtrlAltDel aka DaveC4/5 Complete - 30 Years PostTexas, USA "Carol A. Coveleskie" <[EMAIL PROTECTED]> wrote: subscribe
Re: [QUAD-L] I Wonder Why/ Don't forget to call TODAY
Call Your Senators TodayThe Senate Vote is Confirmed for Tuesday, July 18thThe vote on the Stem Cell Research Enhancement Act, H.R. 810, is scheduled for Tuesday, July 18, 2006 in the United States Senate. Call your Senator TODAY.We need a full court press on the entire Senate to get this bill passed. We can only do that with your help and we know you have what it takes to bring us to victory. It is a vote for H.R. 810, and this bill alone, that will move stem cell research forward in our country.Make it your goal today and this weekend to tell at least 5 friends and family members about the vote and help them call their Senators. This bill and this vote should be the first thing you mention when you talk to your neighbors, your friends on the golf course, or visit with family.Please call your Senators today with this message and have your friends and family do the same: "I know a vote is scheduled for the Stem Cell Research Enhancement Act, H.R. 810 on Tuesday, July 18th. I urge you to vote yes. A yes vote on H.R. 810 is the only vote that I will consider a vote in favor of stem cell research that is pro-patient and pro-research. I request a response from my Senator. My name and address are (fill in the blank)." If you have friends and family in other states, you can look up their Senators at www.senate.gov. You can be connected to any Senate office by calling the Capitol switchboard at 202-224-3121. With Love, CtrlAltDel aka DaveC4/5 Complete - 30 Years PostTexas, USA [EMAIL PROTECTED] wrote: John, I wish I was part of that conversation. It seems people have become numb since then. I have watched and waited for a long time... and nothing. I read about the work in China and thought "nope". Any time a scientist is secretive about his methods, it raises a red flag. But Johns Hopkins work is a completely new ball game. This is the first true research that could make a difference. This ain't no sham! So if I'm excited about it, f**k everyone else. I have hope in my lifetime. Sandy
Re: [QUAD-L] The Vote is In!
The bill passed 63-37, four votes short of the two-thirds majority that would be needed to override Bush's veto. With Love, CtrlAltDel aka DaveC4/5 Complete - 30 Years PostTexas, USA Aaron Mann <[EMAIL PROTECTED]> wrote: -Original Message-From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Tuesday, July 18, 2006 4:02 PMTo: TEXTBREAKINGNEWS@CNNIMAIL12.CNN.COMSubject: CNN Breaking News-- Senate votes 63-37 to loosen President Bush's ban on federal fundingfor embryonic stem cell research, a move Bush has pledged to veto.Watch LIVE video coverage now on CNN Pipeline. Access at http://CNN.com.Only one news network has been the most trusted for nearly two decades:CNN - Still the most trusted name in news.***Get a year of CNN PipelinePlus 6 months of TIME Magazine.Two great products, One special offer.Get it now! www.cnn.com/pipeline/index.time.html***To unsubscribe from CNN.com's Breaking News E-Mail Alert, go to:http://cgi.cnn.com/m/clik?l=textbreakingnewsTo sign up for additional e-mail products, go to http://CNN.com/EMAIL(c)2006. Cable News Network, LP, LLLP.A Time Warner Company.All Rights Reserved.CNN Interactive email id:136151702212136100
[QUAD-L] HR 810
Hey People, Great news people HR 810 passed! Now we know where Americans stand so let's see if GW is going to Veto our hopes. Which he will. Mark
[QUAD-L] The Vote is In!
-Original Message- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Tuesday, July 18, 2006 4:02 PM To: TEXTBREAKINGNEWS@CNNIMAIL12.CNN.COM Subject: CNN Breaking News -- Senate votes 63-37 to loosen President Bush's ban on federal funding for embryonic stem cell research, a move Bush has pledged to veto. Watch LIVE video coverage now on CNN Pipeline. Access at http://CNN.com. Only one news network has been the most trusted for nearly two decades: CNN - Still the most trusted name in news. *** Get a year of CNN Pipeline Plus 6 months of TIME Magazine. Two great products, One special offer. Get it now! www.cnn.com/pipeline/index.time.html *** To unsubscribe from CNN.com's Breaking News E-Mail Alert, go to: http://cgi.cnn.com/m/clik?l=textbreakingnews To sign up for additional e-mail products, go to http://CNN.com/EMAIL (c)2006. Cable News Network, LP, LLLP. A Time Warner Company. All Rights Reserved. CNN Interactive email id:136151702212136100
Re: [QUAD-L] I Wonder Why
Hi Sandy, When it comes to passion, this List ranks at the highest levels. There have been many discussions/posts on the issue in the past. For the sake of peace on the List, we have put the issue to rest in our posts for now. The Quad-List archives are available to read past discussions on the issue. If you have any comments feel free to express them. http://www.makoa.org/quadlist.htm#archive Stem cells have been in the news lately, and those of us watching the issue have been contacting our Legislators about it. Now is the time to call the White House and tell the President how you feel before he vetoes the bill. It would mark the first veto of Bush's presidency. The bill would broaden the limits on funding embryonic stem cell research beyond the strict rules the president outlined four years ago. Bush aides have said they're concerned the measure still may pass the GOP-led Congress by a veto-proof margin. They're working to convince enough Republicans to support the president. "I made [it] very clear to the Congress that the use of federal money, taxpayers' money, to promote science which destroys life in order to save life, I'm against that," Bush told reporters. "Therefore if the bill does that, I will veto it." http://www.cnn.com/2005/POLITICS/05/20/bush.stem.cells/ With Love, CtrlAltDel aka DaveC4/5 Complete - 30 Years PostTexas, USA [EMAIL PROTECTED] wrote: Lately there have been several posts about stem cells that generated NO discussion. STEM CELLS GROW NERVES! It can change our life in our lifetime! I feel no passion, no fervor, no excitement from this group. There are more discussions about Walmart. I don't understand it. I just wonder why??? Sandy
Re: [QUAD-L] For Those Who Live DownUnder!
99 at 2:00 Tuesday in South San Jose,CARichardHOWARD HINSHAW <[EMAIL PROTECTED]> wrote:here in northern calif it's 85 at 1:35pm.- Original Message -From: David K. KelmerTo: gina ; Quad-ListSent: Tuesday, July 18, 2006 1:17 PM Subject: Re: [QUAD-L] For Those Who LiveDownUnder!
Re: [QUAD-L] For Those Who Live DownUnder!
here in northern calif it's 85 at 1:35pm. - Original Message - From: David K. Kelmer To: gina ; Quad-List Sent: Tuesday, July 18, 2006 1:17 PM Subject: Re: [QUAD-L] For Those Who Live DownUnder! Hi Gina, Here in Northwest Texas it is 3:17PM and it's 108F degrees. With Love, CtrlAltDel aka DaveC4/5 Complete - 30 Years PostTexas, USA gina <[EMAIL PROTECTED]> wrote: Well down here in Southeast Texas its 93 , but they say it feels 102 and they arent wrong about thatits HOT but whats new about that right.. ..lol gina[EMAIL PROTECTED] wrote: From: [EMAIL PROTECTED]Date: Sun, 16 Jul 2006 11:54:33 EDTSubject: For Those Who Live DownUnder!To: [EMAIL PROTECTED] For all of those who live downunder and having their annual winter, we are having some Hot Weather in North America. To demonstrate our temps, everyone is encourage to list the temps in their living areas. Chicago 95 but going to 100 today W
Re: [QUAD-L] I Wonder Why-starts in the ER
Brien, you are so right. I would be so happy to have back even a little of what I lost. Little things to maybe everyone else but major things to me, like moving my head, moving my lips, etc. I'd be happy to start here. I'd be ecstatic! Sandy
Re: [QUAD-L] For Those Who Live DownUnder!
Hi Gina, Here in Northwest Texas it is 3:17PM and it's 108F degrees. With Love, CtrlAltDel aka DaveC4/5 Complete - 30 Years PostTexas, USA gina <[EMAIL PROTECTED]> wrote:Well down here in Southeast Texas its 93 , but they say it feels 102 and they arent wrong about thatits HOT but whats new about that right.. ..lol gina[EMAIL PROTECTED] wrote: From: [EMAIL PROTECTED]Date: Sun, 16 Jul 2006 11:54:33 EDTSubject: For Those Who Live DownUnder!To: [EMAIL PROTECTED]For all of those who live downunder and having their annual winter, we are having some Hot Weather in North America. To demonstrate our temps, everyone is encourage to list the temps in their living areas. Chicago 95 but going to 100 today W
Re: [QUAD-L] I Wonder Why-starts in the ER
Walking again, I would be happy just to have the bowel, bladder and sexual function and the possibility of being able to move my legs, have proprioception and have control and function of some of my core trunk muscles. Brien On Jul 17, 2006, at 4:25 PM, gina wrote:My opinion might not count for much. I feel I'm a pretty positive person and I don't want to pop anyones bubble, but with all the red tape that it takes or is going to take for the US to let stem cells no matter how they get them to operate on us...I do hope they do, but unless you are newly hurt I'm not sure its going to be worth the extensive therapy one would have to endure to walk again, only for the fact Ive heard that astronauts have to have alot of therapy depending on the length of time they spend in space like I think it was for 6 mos in space they had to have 2 yrs of therapy, because like us they arent using their legs, Ive been paralyzed for almost 7yrs and as Mark said " i have more important thing to focus on" I have a 16 yr old to raise and her future and to be there however I can for my family. I do hope one day they find a cure, I'm not saying that, but there is life after the chair or in the chair. However that is said..And I'm happy for I went from a nusing home to my own apartment to getting my daughter back things can be good. As was said try to be positive... negativity doesnt get you very far.. Don't think of the cup Half full or Half empty be thankful you have a cup. Gina[EMAIL PROTECTED] wrote: Someone (stranger) at my accident scene said, "Well, you're sure screwed now buddy." I had no idea what he was talking about. My brother broke his neck ten years earlier, and was not paralyzed (happens about 5% of the time) - so I knew what was in store for me. My doc - same doc as my brother - said, "No, yours is different." I thought, OK I can do 'different.' Well, this is different ok. He got pissed at people telling him how lucky he was as he lay on a Stryker frame for 6 weeks growing bones. Now he pretty much agrees with that comment. I also realize how lucky I am as a partially paralyzed C3 - this list has taught me a few things about paralysis. I had a lot of false-positive things said to me but about 2 months in to my rehab, they sent in Dr. Hatchet who informed me they were going to give up on my walking skills and concentrate on getting me functional in a chrome Cadillac. Ugly but necessary - tough love I guess you call it. Nat many people in the know spent a lot of time telling me I'd be walking again. I'm sure WE will find a procedure to alleviate the current pathetic attempts at repairing nerve damage, however I don't think we'll see a major breakthrough in the next 10 years. 15 or 20 maybe - there's a lot of politicking that needs doing 1st. My hope rides with a foreign country that doesn't have the political stem cell barriers to break that WE do here. You can bet that when that happens, WE will be first to help ride the wave, loudly beating our drums, and wherever I am, I'll have a BIG smile. Dave In a message dated 7/17/2006 2:18:41 P.M. US Mountain Standard Time, [EMAIL PROTECTED] writes: Have you noticed that since day one, in the ER, those around you try to be very positive regarding your injury and one's future. Doctors rarely say anything and work behind the scenes surfacing every once in awhile to let you know that THEY are still alive and breathing. From the ER to CCU to ICU to resident recovery those working with you are so positive always stopping short that you will be walking out of THEIR hospital and may have little need for Rehab. Always Positive. When you are ready to be discharged from the hospital and ready for Rehab, they tell you to be posit vie and do the best you can. Be positive. Always be Positive. Then you get to rehab and meet several others who are just like you... or it looks that way. The rehab hospitals always seem to have those cheerleader OT and PTs that try to make the most out of any success you produce and they tell you to be positive. After 3 months of rehab you are toss'd to the curb and often ordered to perform outpatient therapy and remain positive. Then comes along Superman and tells you to be positive. After hearing all of this for so long, one actually starts to believe it. Waiting for the Cure which seems just out of reach. Oh, and remain positive. We still have so much to learn, and learn and learn, while the masses keep pushing and trying to remain positive. I honestly believe that it will happen in the next 20 years, but then again, I'm positive. Good results can not be announced to the masses until successes happen more than once, or twice. But it will happen in your lifetime. Simple repairs in the beginning and more complex repairs as we learn. There was a time in medicine that a new born baby weighing less than 7 lbs had little change for survival. Today, there are babies being born
Re: [QUAD-L] Re: [VENT-L] Could this happen to you?
Hi, I had probems in this area as well. The hospitals want to use their vents when my body is used to my LP-10. I just refused to use the hospitals vents while in ICU or a procedure needs to be done away from my chair. They dont like it but I dont give them a choice. Rick --- Angelique Novak <[EMAIL PROTECTED]> wrote: > My vent stays on my chair, so wheeling down to the > OR on the table thing > and being transferred to the operating table, then > being wheeled into > recovery, and waiting for my parents and chair with > my vent, all > requires the hospital to provide a vent. It wasn't > an issue 5-4 years > ago, they had and used LP-10s, but since 2003, they > don't. They > actually look confused when I say, "I want an LP-10 > vent. Do you have > one?" They don't know what it is, and these are the > RTs! It's > frustrating. > -Angelique > > Silas wrote: > > > I don't go anywhere without my vent, why can't you > use your own > > vent?Silas > > > > - Original Message - > > From: Angelique Novak > > To: [EMAIL PROTECTED] ; Quad List > > Sent: Monday, July 17, 2006 10:58 AM > > Subject: [QUAD-L] Re: [VENT-L] Could this > happen to you? > > Every surgery I've had in the last several > years always has > > vent issues for recovery. I'm on an LP-10, > 24/7. The > > hospitals don't even have them anymore! At > least, that's > > what they tell me. They put me on > "continuous flow" vents. > > I hate those! It's basically > hyperventilating. I have my > > vent settings with me, but they don't jive > with the PLV-1000 > > that they tried last time, or the other non > LP-10 vents > > they've used. The RTs get a hair up their > ass when I don't > > want their vents. > > -Angelique > > Age 25, ventilator dependent quadriplegic > from a spinal cord > > injury at the levels of C1 & C2 in 1994 > > > > [EMAIL PROTECTED] wrote: > > > > > > > > This tough polio survivor lady self manages > her care, and > > > is now on the PLV-102 ventilator full time. > She takes a > > > hard fall while transferring with the help > of her > > > attendant. The femur bone is broken just > above the knee. > > > She describes it as the worst pain she has > ever > > > experienced. Emergency surgery is done to > repair the > > > broken femur. > > > > > > With considerable delay after surgery they > finally let her > > > sister and attendant in to see her. They are > shocked. She > > > is unconscious and struggling to supplement > the hospital > > > ventilator. Her sister and the attendant > want to put her > > > on her PLV-102 which is set up for her. > There is a > > > confrontation, and the recovery room > personnel refuse to > > > let them do it. They threaten them with > being arrested if > > > they try to switch the ventilators.The > sister gets some > > > quick legal advice, and is told exactly what > to say to the > > > hospital RTs. They back off, and she is put > on her PLV-102 > > > for the beginning of recovery. > > > > > > This should never have happened. All > respiratory > > > therapists and respiratory care nurses are > not experienced > > > with paralytic patient Control Mode > ventilation. Sometimes > > > they try to wean patients using Assist Mode > without > > > knowing enough about the patient. The slow > rate and small > > > volumes of Assist are not adequate > ventilation for us. > > > > > > What might be a good idea is to have our > vent settings > > > written into our medical directory, and > signed by the > > > pulmonologist. Give the patient, our family > and attendant > > > some respectâplease. > > > > > > Jerry Daniel > > > __ Do You Yahoo!? Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com
Re: [QUAD-L] Re: [VENT-L] Could this happen to you?
I'll have to remember that, Sandy. I doubt they'll do it, though. They get defensive when they don't know something about what I request and/or need. That's always a joy. The next time I need a surgery, (hopefully not for a long, long time, the last one put me at number 24 or 25, I've lost track), I'll have a call made ahead of time to see if they'll do that. They're lazy. -Angelique [EMAIL PROTECTED] wrote: I use an LP 10 too. When I go to the hospital I always use my own ventilator. The LP 10 is more a home ventilator and I'm not surprised most hospitals don't use them. I have asked the RTs at the hospital I use to be inserviced on home ventilators so they can always be prepared. They have done this. Sandy
Re: [QUAD-L] UTI
Hi Glenn, His Urologist is probably right. Get all the tests done before he makes any decisions. It may turn-out to be something that can be fixed without surgery. If not, I'd think the Uro would clearly explain all of his options before proceeding. With Love, CtrlAltDel aka DaveC4/5 Complete - 30 Years PostTexas, USA [EMAIL PROTECTED] wrote: A quad friend of mine is having problems with frequent UTIs. He uses an indwelling catheter and has for 35 years. Of course using an indwelling catheter that long has caused some severe erosion of the skin. He has not had any urological exams in the past five years. Over the last three months he has a lot of leaky age and bloody discharge from outside of the bladder. I finally talked him into going to the urologist and the urologist is concerned about a tumor. He will be going in for an exam and alter sound of his kidneys and a few weeks. The urologist mentioned that the option of urinary diversion is a possibility, but when he asked for further information, that Dr. simply said let's just see what we have. I told him I would try and get some information from the Internet, but have not found much. Any success or horror stories to pass on to him? Thanks, GA
Re: [QUAD-L] Smurfy here!
Hi Smurf, I knew you'd be staying busy with your work. Those Smurfs are really hard workers! It is good to hear from you anyway. ;-{) With Love, CtrlAltDel aka DaveC4/5 Complete - 30 Years PostTexas, USA [EMAIL PROTECTED] wrote: Hey peeps, A
couple of you have emailed me coz I aint been leaving any messages on the board for you guys... I haven't abandoned any of you in the slightest, honest To give you a update, I'm currently filming the BBC stuff at the moment, thats all going fantastically well and I''m loving every second of it!! The producers and directors are all extremely pleased with my work, and are strongly encouraging me never to give up the acting business as apparently I can really act which was a massive compliment! I'm currently working in London Monday - Friday and I get to come home at the weekend. I'm doing like a video diary of the whole experience, showing my hotel room of, doing behind the scene tours and all that so if any of you wanna see some just shout! I've got some photo's to show you all also if you like, this one was taken at the end of my second day of shooting, the people with me are my
characters gang mates, and obviously I'm the one in chair! My character is Vicky, and I'm a heavy Goth, not that it shows in the photo! Hope your all well, and I'll speak to you all when I'm next home! Take care, missing you all!! Loads of love, Smurf xxx
Re: [QUAD-L] EVERYONE! Re: Shahidul Alam and a QUAD LIST
Hi Lori, It is most certainly a FIVE * STAR Site. With Love, CtrlAltDel aka DaveC4/5 Complete - 30 Years PostTexas, USA Lori Michaelson <[EMAIL PROTECTED]> wrote: So sorry to hear about your father! I lost both my mother and father when I was a teenager. Life does go on so I am glad to hear from you! Your site is so user-friendly and there are still so many people listed on it with a bunch of information! I have not seen another site that is so well-organized. It is great to be able to find someone so easily by their first name. Please reconsider closing it down when IT is so well done!!! I think that there are a lot of new people here that just do not know about it. Most of my information is still the same I see although I should update my photograph. You take care in the meantime but don't go away! How many others have been to Shahidul's great site? If not, please go there and let us vote or give an opinion as to whether that is a great quad list or not. http://scilist.port5.Com/ I've already said that I find it so user-friendly and it is a great place to go just for the basic information and facts about everyone. It is not bogged down with blogs, chat, or numerous other things. What does everyone think? Lori ---Original Message--- From: Shahidul Date: 7/16/2006 1:48:40 AM To: quad-list@eskimo.com Cc: Lori Michaelson Subject: Re: [QUAD-L] Shahidul Alam Hi Lori:-) Thanks for remembering me. Yes. I am still surviving. Spending very limited time in the Internet. Father passed away recently. So I am left with my mother and attendants. Because of fathers death, i am wondering when I shall be called ! Though it may be just result of the situation. Time will heal this attitude, I am sure. I have stopped working on this site for quite a while now. Because there is nothing to update. It seems to me it is failed to attract the visitors. I can see there are quite a no. of rather professional SCI web sites now. I think I better quit. I see your & few others posts regularly. Please take care :-) Shahidul On 7/14/06, Lori Michaelson < [EMAIL PROTECTED]> wrote: Are you still around Shahidul? Someone said the SCI list is "full." Hope you are ok.. your site is so well-done. http://scilist.port5.Com/ Lori C4/5 Quad, 26 yrs post AZ
Re: [QUAD-L] Re: [VENT-L] Could this happen to you?
I use an LP 10 too. When I go to the hospital I always use my own ventilator. The LP 10 is more a home ventilator and I'm not surprised most hospitals don't use them. I have asked the RTs at the hospital I use to be inserviced on home ventilators so they can always be prepared. They have done this. Sandy
Re: [QUAD-L] Shahidul Alam
Hi Shahidul, It's nic to hear you are well. I often check your Homepage looking for new pics posted there. Stay strong. With Love, CtrlAltDel aka DaveC4/5 Complete - 30 Years PostTexas, USAShahidul <[EMAIL PROTECTED]> wrote:Hi Lori:-) Thanks for remembering me. Yes. I am still surviving. Spending very limited time in the Internet. Father passed away recently. So I am left with my mother and attendants. Because of fathers death, i am wondering when I shall be called ! Though it may be just result of the situation. Time will heal this attitude, I am sure. I have stopped working on this site for quite a while now. Because there is nothing to update. It seems to me it is failed to attract the visitors. I can see there are quite a no. of rather professional SCI web sites now. I think I better quit. I see your & few others posts regularly. Please take care :-) Shahidul On 7/14/06, Lori Michaelson < [EMAIL PROTECTED]> wrote: Are you still around Shahidul? Someone said the SCI list is "full." Hope you are ok.. your site is so well-done. http://scilist.port5.Com/ Lori C4/5 Quad, 26 yrs post AZ
Re: [QUAD-L] Google Earth
I'd love to use that but it only works with XP. Silly me, downloaded it without reading the specs a few months ago. D'oh! StephanieSwamp Sista http://360.yahoo.com/curly_top35
[QUAD-L] Re: [VENT-L] Could this happen to you?
Jerry- I've always been that shy! Even before my injury. A teacher's nightmare, I questioned everything on a different level. My RT said something like that about the conversion stuff, when I told him what happened the last time I went in for a surgery. He was amazed that they didn't have LP-10s, and that they called is employer company to see if they could supply one. I was switched over to my vent that time for the surgery and recovery. That was a pain for my mom, she switched it over. I don't see why they didn't have at least 1 LP-10 somewhere in the entire hospital. They had just bought many PLV-100s, and the RTs had no idea how to program them yet! Fantastic for the few ventilator dependent people needing surgery, right? At least the RT wasn't pissy about that last time. But she was younger. The older ones are usually bitchy, especially when they see I use an LP-10. -Angelique [EMAIL PROTECTED] wrote: Angelique:You are so shy about expressing your feelings! Probably what was meant when they said your LP10 settings "don't jive" with the PLV-100, is that the inspiratory setting is a different unit. The LP vents use inspiratory time, and it's Liters per minute on the PLV-100. There is a table for conversion. Don't ask me why; they should use the same inunits. Jerry
Re: [QUAD-L] BAG BALM- LANTISEPTIC
Hi Lori, It sure has, and an ass is a terrible thing to lose! With Love, CtrlAltDel aka DaveC4/5 Complete - 30 Years PostTexas, USA Lori Michaelson <[EMAIL PROTECTED]> wrote:LANTISEPTIC HAS SAVED MY [AND Dave K's] ASS -- LITERALLY. Bag balm toughens skin. ---Original Message--- From: Danny Hearn Date: 7/15/2006 5:38:55 PM To: Tim Syfert; quad-list@eskimo.com Subject: Re: [QUAD-L] Wal Mart and Made in America and so on. Hi, Tim I heard of that bag balm from someone in the room, I bought mine at WALGEENS tho lol It is pretty good stuff, also someone else in here, Dave I think told me of another cream called Lanaceptic or something like that that is a good product too.Tim Syfert <[EMAIL PROTECTED]> wrote: HI wonder where my Wal-Mart Bag Balm is made. Danny Hearn <[EMAIL PROTECTED]> wrote: Many on this list may not be aware but today with Modern Technology and a WORLD GLOBAL TRADE and Economy there is not much MADE IN AMERICA exclusivly so much anymore..heck even many so called American Cars have more FOREIGN PARTS than very many of the FOREIGN made cars ... LOL this may be a sad fact but true, DO you know that EVEN our AMERICAN FLAG is FOREIN MADE in ( China ) and other countries.??? Dan** Do you Yahoo!?Next-gen email? Have it all with the all-new Yahoo! Mail Beta.
Re: [QUAD-L] BAG BALM- LANTISEPTIC
Hi Lori, It sure has, and an ass is a terrible thing to lose! With Love, CtrlAltDel aka DaveC4/5 Complete - 30 Years PostTexas, USA Lori Michaelson <[EMAIL PROTECTED]> wrote:LANTISEPTIC HAS SAVED MY [AND Dave K's] ASS -- LITERALLY. Bag balm toughens skin. ---Original Message--- From: Danny Hearn Date: 7/15/2006 5:38:55 PM To: Tim Syfert; quad-list@eskimo.com Subject: Re: [QUAD-L] Wal Mart and Made in America and so on. Hi, Tim I heard of that bag balm from someone in the room, I bought mine at WALGEENS tho lol It is pretty good stuff, also someone else in here, Dave I think told me of another cream called Lanaceptic or something like that that is a good product too.Tim Syfert <[EMAIL PROTECTED]> wrote: HI wonder where my Wal-Mart Bag Balm is made. Danny Hearn <[EMAIL PROTECTED]> wrote: Many on this list may not be aware but today with Modern Technology and a WORLD GLOBAL TRADE and Economy there is not much MADE IN AMERICA exclusivly so much anymore..heck even many so called American Cars have more FOREIGN PARTS than very many of the FOREIGN made cars ... LOL this may be a sad fact but true, DO you know that EVEN our AMERICAN FLAG is FOREIN MADE in ( China ) and other countries.??? Dan** Do you Yahoo!?Next-gen email? Have it all with the all-new Yahoo! Mail Beta.
Re: [QUAD-L] Wal Mart and Made in America and so on.
Hi Danny, They both work good, but the bag balm toughens the skin, while the Lanaceptic softens the skin. With Love, CtrlAltDel aka DaveC4/5 Complete - 30 Years PostTexas, USA Danny Hearn <[EMAIL PROTECTED]> wrote: Hi, Tim I heard of that bag balm from someone in the room, I bought mine at WALGEENS tho lol It is pretty good stuff, also someone else in here, Dave I think told me of another cream called Lanaceptic or something like that that is a good product too.Tim Syfert <[EMAIL PROTECTED]> wrote: HI wonder where my Wal-Mart Bag Balm is made. Danny Hearn <[EMAIL PROTECTED]> wrote: Many on this list may not be aware but today with Modern Technology and a WORLD GLOBAL TRADE and Economy there is not much MADE IN AMERICA exclusivly so much anymore..heck even many so called American Cars have more FOREIGN PARTS than very many of the FOREIGN made cars ... LOL this may be a sad fact but true, DO you know that EVEN our AMERICAN FLAG is FOREIN MADE in ( China ) and other countries.??? Dan** Do you Yahoo!?Next-gen email? Have it all with the all-new Yahoo! Mail Beta.
Re: [QUAD-L] Wal Mart and Made in America and so on.
Hi Tim, My medical supplies come from C R Bard, Inc., and are listed as being from Moncks Corner, South Carolina. Buy USA! With Love, CtrlAltDel aka DaveC4/5 Complete - 30 Years PostTexas, USA Tim Syfert <[EMAIL PROTECTED]> wrote:HI wonder where my Wal-Mart Bag Balm is made. Danny Hearn <[EMAIL PROTECTED]> wrote: Many on this list may not be aware but today with Modern Technology and a WORLD GLOBAL TRADE and Economy there is not much MADE IN AMERICA exclusivly so much anymore..heck even many so called American Cars have more FOREIGN PARTS than very many of the FOREIGN made cars ... LOL this may be a sad fact but true, DO you know that EVEN our AMERICAN FLAG is FOREIN MADE in ( China ) and other countries.??? Dan** Do you Yahoo!?Next-gen email? Have it all with the all-new Yahoo! Mail Beta.
Re: [QUAD-L] ~ Bobbie here, You think your smart?
Hi Bobbie, It does make you think. The font could have been a little bit bigger for my old eyes to read. :) With Love, CtrlAltDel aka DaveC4/5 Complete - 30 Years PostTexas, USA [EMAIL PROTECTED] wrote: Click here: Brain Quest Senior My 8 year old great nephew sent this to me. I tried to do some, but lost. LOL Try some Bobbie
Re: [QUAD-L] Transportation Crisis in Jacksonville, Fl
John, I have an Assistive Tech loan and I'm sure you could get one in your state. http://www.faast.org/index.cfm I also found this site which might help others in need of equipment. http://www.familycafe.net/classifieds/ Mark ---Original Message--- From: [EMAIL PROTECTED] Date: 07/18/06 10:16:40 To: [EMAIL PROTECTED]; [EMAIL PROTECTED]; quad-list@eskimo.com Subject: Re: [QUAD-L] Transportation Crisis in Jacksonville, Fl In a message dated 7/18/2006 10:14:31 AM Central Daylight Time, [EMAIL PROTECTED] writes: I have to agree. If your van is useless to you then get it out of your name untill it is repaired or sold and you can try to get another van. Keep something around in case you need to evacuate. Don't be ashamed to ask local churches for help fixing your van. I've heard of churches lending money at very low rates to assist handicapped who worked and payed them back. In fact, 0% loans are common. good luck, john Sell it to the church and let them repair it and sell it back to you when they are down. W
Re: [QUAD-L] I Wonder Why-starts in the ER
good for you, sandy. everyone needs hope. everyone has some type of problem and hopee is a wonderful thing. alan - Original Message - From: [EMAIL PROTECTED] To: quad-list@eskimo.com Sent: Tuesday, July 18, 2006 12:09 PM Subject: Re: [QUAD-L] I Wonder Why-starts in the ER Ditto for ALS. But for ALS there is ABSOLUTELY NO treatment or medication. I am paralyzed up to my eyeballs and it never stops. But do I love life? Yep! I have an 11 year old son I absolutely love, I'm here for him. And when stem cells start to replace neurons, I'll be there even if rehab takes "forever". Sandy
Re: [QUAD-L] Wal-Mart
No they can't pay 100% but the national average that employees pay for health care is 16% for single people and 28% for families but Wal-Mart's average is 41% for employees, isn't that quite a huge difference? Part time employees(34 hours and less) which is what Wal-Mart prefers are eligible after 1 year btw and their spouses aren't eligible at all. I get an ear full every day my aid comes in on her days off of Wal-Mart which I guess I should thank because if she worked somewhere else she wouldn't have to work 7 days a week. Mark ---Original Message--- From: tahouston Date: 07/17/06 19:43:49 To: quad-list@eskimo.com Subject: Re: [QUAD-L] Wal-Mart I had great medical benefits of my job while I was working and I also had to pay for it. Most companies cannot afford to pay 100% of medical benefits for all of their employees. Even the large motor companies with the lucrative unions continually layoff workers so that the remaining workers can keep their benefits. Do you think that the employees who are remaining feel enough empathy for the employees that were laid off to give up some of their benefits and lower their pay scale? I think not! T. Houston C5 C6 - Original Message - From: RollinOn To: quad-list@eskimo.com ; Bill_J Sent: Monday, July 17, 2006 11:06 AM Subject: Re: [QUAD-L] Wal-Mart What do you think will happen when Wal-Mart employees finally unionize? One of my aids works for Wal-Mart btw and they talk about it more than people think but if management hears it you'll be fired in a millisecond. One Wal-Mart store in Canada unionized and Wal-Mart simply closed the store leaving a massive empty eyesore. Wal-Mart doesn't provide health care unless you pay for it. Almost half can't afford it and the ones who do find it doesn't cover dental or eye doctors. Mark ---Original Message--- From: Bill_J Date: 07/17/06 10:46:01 To: quad-list@eskimo.com Subject: Re: [QUAD-L] Wal-Mart Walmart DOES provide health insurance after 6 months on the job. It also pays $7.50/hour here. Granted, that is NOT enough to raise a family on, but with health insurance and stock options a single person can do it. Sure, they sell stuff from China, Korea, Japan, Taiwan, India, etc. Do you think your Dodge Charger is made 100% in America? The engine is from Germany, the transmission is from France and the rack and pinion steering is from Mexico. There is not one product that is 100% made in America. Dell computers claim to be, but the wiring is from Taiwan, circuit boards are from Japan, etc. Sure the DVD's, VCR's and TV's are made in Asian countries. Workers in America (and their unions) demand too high of wages to make "Made in America" profitable. Bill age 55C6 Incomplete since 7/20/68Leesburg, FLI personally don't mind growing old, but my body's taking it badly. - Original Message - From: [EMAIL PROTECTED] To: quad-list@eskimo.com Sent: Monday, July 17, 2006 11:24 AM Subject: Re: [QUAD-L] Wal-Mart No jobless? really? GW has sent US unemployment to zero? That's got to be a first. When did all this happen? Walmart could pay for lots of stuff, then raise prices and be less competitive. For such an intelligent man, your view on this one really baffles me. You obviously just want Walmart gone - I can at least understand that - free enterprise goes only so far with you. My guess is you are for animal rights, against lab-rat testing and a vegetarian as well. Everyone has an opinion. Dave In a message dated 7/17/2006 6:31:37 A.M. US Mountain Standard Time, [EMAIL PROTECTED] writes: Americans aren't jobless and walmart could pay for healthcare and beatup insurance companies too, dave. john In a message dated 7/15/2006 6:26:00 PM Eastern Daylight Time, [EMAIL PROTECTED] writes: Americans are jobless because they won't work for the same wages. I think all US-WALMART employees pay US taxes. If you mean the Chinese workers, NO Chinese worker pays US taxes. American companies can get on WALMART's shelves, they just have to follow Walmart's rules. The internet is also as great place to hawk one's wares. Bossing Walmart around is a poor substitute for smarting up and beating them at their own game. Are you suggesting that Walmart should dismiss all foreign labor and hire only American workers at whatever the Americans will consent to work for because that's the loyal thing to do? You think they should voluntarily or be forced to hire expensive labor and live with the losses? Are you ready to pay more for everything on the shelves at Walmart? After forcing Walmart to do the loyal thing, will you go after the oil industry to roll back prices to the 1950 level? They are both in the fantasy realm you know. Dave Dave www.daveoconnell.com c3-inc-1967
Re: [QUAD-L] I Wonder Why
Am I missing something? Do you take your money with you to heaven because if there's a toll charge at the gates I'm going to be one hot quad. Mark ---Original Message--- From: tahouston Date: 07/17/06 19:49:58 To: quad-list@eskimo.com Subject: Re: [QUAD-L] I Wonder Why God did not say that the rich will not reach heaven, it is interpreted that the rich who honors and worship material items will not enter heaven. That also goes for poor people. - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] ; quad-list@eskimo.com Sent: Monday, July 17, 2006 11:39 AM Subject: Re: [QUAD-L] I Wonder Why Sandy, You missed the big convo about stem cells about a year ago. There are a lot of folks that think the president is right because he is a very moral man ,,in the mind of some people. Nevermind the science, its immoral to change gods punnishments. Same arguement they had against using cadavars. These aren't cells, these are babies! These are miracles! Yada yada Just write politicians and who knows, maybe we will walk in time for all the fundamentalists to destroy the planet in the name of god. Try reminding them that god said rich people will not enter heaven, so why take moral advice from people who are going to burn in hell. john In a message dated 7/16/2006 6:46:10 PM Eastern Daylight Time, [EMAIL PROTECTED] writes: Lately there have been several posts about stem cells that generated NO discussion. STEM CELLS GROW NERVES! It can change our life in our lifetime! I feel no passion, no fervor, no excitement from this group. There are more discussions about Walmart. I don't understand it. I just wonder why??? Sandy
Re: [QUAD-L] I Wonder Why-starts in the ER
Ditto for ALS. But for ALS there is ABSOLUTELY NO treatment or medication. I am paralyzed up to my eyeballs and it never stops. But do I love life? Yep! I have an 11 year old son I absolutely love, I'm here for him. And when stem cells start to replace neurons, I'll be there even if rehab takes "forever". Sandy
[QUAD-L] Re: transportation Requirements in Jacksonville, Fla
I saw that, W, but after I sent my reply. LOL I still think letting legislators and investigative reporters in on the problem may open some eyes and free up some funds to correct the problem, if not permanently, then on a temporary basis. Bill age 55C6 Incomplete since 7/20/68Leesburg, FLI personally don't mind growing old, but my body's taking it badly. - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] ; quad-list@eskimo.com Sent: Tuesday, July 18, 2006 11:10 AM Subject: transportation Requirements in Jacksonville, Fla Hiya Bill, I don't know if your read my last posting regarding the Jacksonville Transport company who is the subject of the problem, but they are very cash strapped at this time. They use every possible reason to disqualify a person from using their system. I suggested that he sell his van for $1 to a friend and then he will qualify for transport with a transport company that is still near bankruptcy. Best Wishes W In a message dated 7/18/2006 9:34:00 AM Central Daylight Time, [EMAIL PROTECTED] writes: Send the same letter to your state rep, state senator, the Dept. of Transportation and 2 or 3 local TV stations. Try to find out who the TV's investigative reporters are. It does get action. Bill age 55C6 Incomplete since 7/20/68Leesburg, FLI personally don't mind growing old, but my body's taking it badly.
Re: [QUAD-L] Re: [VENT-L] Could this happen to you?
My vent stays on my chair, so wheeling down to the OR on the table thing and being transferred to the operating table, then being wheeled into recovery, and waiting for my parents and chair with my vent, all requires the hospital to provide a vent. It wasn't an issue 5-4 years ago, they had and used LP-10s, but since 2003, they don't. They actually look confused when I say, "I want an LP-10 vent. Do you have one?" They don't know what it is, and these are the RTs! It's frustrating. -Angelique Silas wrote: I don't go anywhere without my vent, why can't you use your own vent?Silas - Original Message - From:Angelique Novak To: [EMAIL PROTECTED] ; Quad List Sent: Monday, July 17, 2006 10:58 AM Subject: [QUAD-L] Re: [VENT-L] Could this happen to you? Every surgery I've had in the last several years always has vent issues for recovery. I'm on an LP-10, 24/7. The hospitals don't even have them anymore! At least, that's what they tell me. They put me on "continuous flow" vents. I hate those! It's basically hyperventilating. I have my vent settings with me, but they don't jive with the PLV-1000 that they tried last time, or the other non LP-10 vents they've used. The RTs get a hair up their ass when I don't want their vents. -Angelique Age 25, ventilator dependent quadriplegic from a spinal cord injury at the levels of C1 & C2 in 1994 [EMAIL PROTECTED] wrote: This tough polio survivor lady self manages her care, and is now on the PLV-102 ventilator full time. She takes a hard fall while transferring with the help of her attendant. The femur bone is broken just above the knee. She describes it as the worst pain she has ever experienced. Emergency surgery is done to repair the broken femur. With considerable delay after surgery they finally let her sister and attendant in to see her. They are shocked. She is unconscious and struggling to supplement the hospital ventilator. Her sister and the attendant want to put her on her PLV-102 which is set up for her. There is a confrontation, and the recovery room personnel refuse to let them do it. They threaten them with being arrested if they try to switch the ventilators.The sister gets some quick legal advice, and is told exactly what to say to the hospital RTs. They back off, and she is put on her PLV-102 for the beginning of recovery. This should never have happened. All respiratory therapists and respiratory care nurses are not experienced with paralytic patient Control Mode ventilation. Sometimes they try to wean patients using Assist Mode without knowing enough about the patient. The slow rate and small volumes of Assist are not adequate ventilation for us. What might be a good idea is to have our vent settings written into our medical directory, and signed by the pulmonologist. Give the patient, our family and attendant some respectâ€please. Jerry Daniel
Re: [QUAD-L] Re: [VENT-L] Could this happen to you?
My vent stays on my chair, so wheeling down to the OR on the table thing and being transferred to the operating table, then being wheeled into recovery, and waiting for my parents and chair with my vent, all requires the hospital to provide a vent. It wasn't an issue 5-4 years ago, they had and used LP-10s, but since 2003, they don't. They actually look confused when I say, "I want an LP-10 vent. Do you have one?" They don't know what it is, and these are the RTs! It's frustrating. -Angelique Silas wrote: I don't go anywhere without my vent, why can't you use your own vent?Silas - Original Message - From: Angelique Novak To: [EMAIL PROTECTED] ; Quad List Sent: Monday, July 17, 2006 10:58 AM Subject: [QUAD-L] Re: [VENT-L] Could this happen to you? Every surgery I've had in the last several years always has vent issues for recovery. I'm on an LP-10, 24/7. The hospitals don't even have them anymore! At least, that's what they tell me. They put me on "continuous flow" vents. I hate those! It's basically hyperventilating. I have my vent settings with me, but they don't jive with the PLV-1000 that they tried last time, or the other non LP-10 vents they've used. The RTs get a hair up their ass when I don't want their vents. -Angelique Age 25, ventilator dependent quadriplegic from a spinal cord injury at the levels of C1 & C2 in 1994 [EMAIL PROTECTED] wrote: This tough polio survivor lady self manages her care, and is now on the PLV-102 ventilator full time. She takes a hard fall while transferring with the help of her attendant. The femur bone is broken just above the knee. She describes it as the worst pain she has ever experienced. Emergency surgery is done to repair the broken femur. With considerable delay after surgery they finally let her sister and attendant in to see her. They are shocked. She is unconscious and struggling to supplement the hospital ventilator. Her sister and the attendant want to put her on her PLV-102 which is set up for her. There is a confrontation, and the recovery room personnel refuse to let them do it. They threaten them with being arrested if they try to switch the ventilators.The sister gets some quick legal advice, and is told exactly what to say to the hospital RTs. They back off, and she is put on her PLV-102 for the beginning of recovery. This should never have happened. All respiratory therapists and respiratory care nurses are not experienced with paralytic patient Control Mode ventilation. Sometimes they try to wean patients using Assist Mode without knowing enough about the patient. The slow rate and small volumes of Assist are not adequate ventilation for us. What might be a good idea is to have our vent settings written into our medical directory, and signed by the pulmonologist. Give the patient, our family and attendant some respectâ€please. Jerry Daniel
Re: [QUAD-L] Transportation Crisis in Jacksonville, Fl
It helps churches feel better about themselves , too john In a message dated 7/18/2006 11:15:30 AM Eastern Daylight Time, wheelchair writes: In a message dated 7/18/2006 10:14:31 AM Central Daylight Time, [EMAIL PROTECTED] writes: I have to agree. If your van is useless to you then get it out of your name untill it is repaired or sold and you can try to get another van. Keep something around in case you need to evacuate. Don't be ashamed to ask local churches for help fixing your van. I've heard of churches lending money at very low rates to assist handicapped who worked and payed them back. In fact, 0% loans are common. good luck, john Sell it to the church and let them repair it and sell it back to you when they are down. W
Re: [QUAD-L] Transportation Crisis in Jacksonville, Fl
In a message dated 7/18/2006 10:14:31 AM Central Daylight Time, [EMAIL PROTECTED] writes: I have to agree. If your van is useless to you then get it out of your name untill it is repaired or sold and you can try to get another van. Keep something around in case you need to evacuate. Don't be ashamed to ask local churches for help fixing your van. I've heard of churches lending money at very low rates to assist handicapped who worked and payed them back. In fact, 0% loans are common. good luck, john Sell it to the church and let them repair it and sell it back to you when they are down. W
Re: [QUAD-L] Transportation Crisis in Jacksonville, Fl
I have to agree. If your van is useless to you then get it out of your name untill it is repaired or sold and you can try to get another van. Keep something around in case you need to evacuate. Don't be ashamed to ask local churches for help fixing your van. I've heard of churches lending money at very low rates to assist handicapped who worked and payed them back. In fact, 0% loans are common. good luck, john P.S. I prefer begging myself. It helps people to feel better about themselves. A good day can make help a lot of folks feel better. In a message dated 7/18/2006 10:07:29 AM Eastern Daylight Time, [EMAIL PROTECTED] writes: Just finished a telephone call with Jacksonville- CIL, and was advised of a major transportation crisis in that area of the country. The transportation company is near bankruptcy and has a list of reasons to disqualify people from using it. Bottom lines is that its much more rewarding to battle with a solvent transportation company, rather than one who is ready to closes its doors to everyone. Maybe, the best short answer to your problem is selling that old broken van to a friend for $1. This way you have no ownership, and thus requalify for that failing transport company, until it closes its doors. After that, your friend can resell the van back to you. Its merely fighting fire. with fire. Best Wishes W In a message dated 7/17/2006 5:44:32 PM Central Daylight Time, [EMAIL PROTECTED] writes: This is the e-mail I sent maybe something will happen.Austin
[QUAD-L] transportation Requirements in Jacksonville, Fla
Hiya Bill, I don't know if your read my last posting regarding the Jacksonville Transport company who is the subject of the problem, but they are very cash strapped at this time. They use every possible reason to disqualify a person from using their system. I suggested that he sell his van for $1 to a friend and then he will qualify for transport with a transport company that is still near bankruptcy. Best Wishes W In a message dated 7/18/2006 9:34:00 AM Central Daylight Time, [EMAIL PROTECTED] writes: Send the same letter to your state rep, state senator, the Dept. of Transportation and 2 or 3 local TV stations. Try to find out who the TV's investigative reporters are. It does get action. Bill age 55C6 Incomplete since 7/20/68Leesburg, FLI personally don't mind growing old, but my body's taking it badly.
[QUAD-L] tétra parmi les quads ???
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Re: [QUAD-L] Transportation Requirements in Jacksonville, Fla
Send the same letter to your state rep, state senator, the Dept. of Transportation and 2 or 3 local TV stations. Try to find out who the TV's investigative reporters are. It does get action. Bill age 55C6 Incomplete since 7/20/68Leesburg, FLI personally don't mind growing old, but my body's taking it badly. - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] ; quad-list@eskimo.com Cc: [EMAIL PROTECTED] Sent: Monday, July 17, 2006 8:25 PM Subject: [QUAD-L] Transportation Requirements in Jacksonville, Fla I personally wish you success in your efforts and have forward a copy of your letter to Matt Motko, Executive Director- CIL- Jacksonville, FL for their perusal and comments. I sincerely believe that you have a marketable story suitable for Dateline-TV Both Justin Dart and Ed Roberts, would be proud to see you follow tracks. Best Wishes W In a message dated 7/17/2006 5:44:32 PM Central Daylight Time, [EMAIL PROTECTED] writes: Honorable Governor Bush: I have been a C4-5 quadriplegic for the past eight years and a lifelong resident of our state. Prior to that I worked full-time with the fire department. The past eight years I was able to provide myself with safe and reliable transportation. I now find myself needing to access community transportation. My older model van and lift are in need of repairs and cannot provide me with safe and reliable service. I applied for the use of community transportation, explaining that my wheelchair lift did not provide me with safe and reliable use until it was replaced or professionally repaired, which I cannot afford to do. The few repairs made have been through friends with limited or no professional knowledge of this type of equipment.The community transportation of Jacksonville denied my application because I had access to a vehicle. I have repeatedly tried to explain the equipment I have is unsafe and their response has been, "its not our problem and you do not appreciate our rules. You should an use private pay transportation". Private pay is way beyond anyone's budget. Their appeals process was equally frustrating. Being approved for "medical trips only" provides absolutely no service in my particular situation. The appeals board apparently decided that I didn't need or have a right to access my pharmacy, dentist or ophthalmologist, purchase groceries, attend church services, or participate in any quality of life activities available to other citizens in our community. As a high level quadriplegic, I'm totally dependent upon others for my every need, such as access to reliable transportation and other services. These are vital life-sustaining issues with me. The idea that I have access to a van should have absolutely no bearing on my using federally funded transportation. Any disabled owner's van could be involved in a motor vehicle accident and be completely totaled. There are a variety of other reasons a disabled person's own vehicle would not be available when needed, such as the availability of a driver or lack of insurance.I feel that I and other disabled citizens have been discriminated against with this blanket denial of services. Able-bodied citizens owning motor vehicles, motorcycles, vans and trucks can readily use public transportation. To make someone on a fixed income spend their limited resources on private pay transport borderlines on gouging the least able to pay and the most vulnerable of citizens. This is unconscionable. The community transport vehicles specifically equipped for wheelchairs roam the streets of our city daily with only a driver and helper and the occasional user. I have been told of the limited resources available to community transportation, and having vehicles just drive around the city to provide someone a paycheck is not being a good steward of these funds.Sir, I would greatly appreciate any assistance your office may provide. I may be reached for all contact information by e-mail. I would love the opportunity to speak with someone concerning this matter. Respectfully,Austin WilsonJacksonville [EMAIL PROTECTED]
[QUAD-L] Transportation Crisis in Jacksonville, Fl
Just finished a telephone call with Jacksonville- CIL, and was advised of a major transportation crisis in that area of the country. The transportation company is near bankruptcy and has a list of reasons to disqualify people from using it. Bottom lines is that its much more rewarding to battle with a solvent transportation company, rather than one who is ready to closes its doors to everyone. Maybe, the best short answer to your problem is selling that old broken van to a friend for $1. This way you have no ownership, and thus requalify for that failing transport company, until it closes its doors. After that, your friend can resell the van back to you. Its merely fighting fire. with fire. Best Wishes W In a message dated 7/17/2006 5:44:32 PM Central Daylight Time, [EMAIL PROTECTED] writes: This is the e-mail I sent maybe something will happen.Austin
