[QUAD-L] Rookie, Amature, Humbled Member
August 2 made it 3 years post. I appreciate the combined wisdom I get daily. my gratitude is unending. :) I'm 34, separated from my wife 2 1/2 years, I have a wonderful girlfriend who is also a quadlist member. JT
[QUAD-L] FW: Shingles.
_ From: Jason [mailto:[EMAIL PROTECTED] Sent: Sunday, July 22, 2007 11:23 AM To: 'quad-list@eskimo.com' Subject: Shingles. Those of us who spend much time in a doctor's office Should appreciate this! Doesn't it seem more and more that physicians are Running their practices like an assembly line? Here's What happened to Bubba: Bubba walked into a doctor's office and the Receptionist asked him what he had. Bubba said: Shingles. So she wrote down his name, address, Medical insurance number and told him To have a seat. Fifteen minutes later a nurse's aide came out and Asked Bubba what he had. Bubba said, Shingles. So she wrote down his height, Weight, a complete medical history And told Bubba to wait in the examining room. A half hour later a nurse came in and asked Bubba what He had. Bubba said, Shingles. So the nurse gave Bubba a blood test, a blood Pressure test, an electrocardiogram, And told Bubba to take off all his clothes and waitfor the doctor. An hour later the doctor came in and found Bubba Sitting patiently in the nude and asked Bubba what he had. Bubba said, Shingles. The doctor Asked, Where? Bubba said, Outside on the truck. Where do you want Me to unload 'em??
[QUAD-L] NCIL
Is anyone going to DC this week, for the National Council on Independent Living ? I fly out of Burlington, VT tomorrow at 10:30 am and should be at the Hyatt by 2. If anyone is going from the list I would enjoy meeting up. JT
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[QUAD-L] 25 below at 5 am
All this talk of being cold, when I get cold to the core it takes FOREVER to warm up again. Thank god for the wood stove and my boiled wool shawl. tomorrow we are expecting 24 in of snow JT -- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.5.441 / Virus Database: 268.17.37/682 - Release Date: 2/12/2007 1:23 PM
RE: [QUAD-L] HANGING A BEDBAG
i HAVE DISCOVERED IT TO BE EASIER to put the condom cath on pointing down, I run the tube between my legs and under my knee. Then I put the bag on the floor. The other thing I have discovered is barrier wipes, used on my penis before applying Wide Band, or similar "extra adhesive styly external cath. Last night I discovered another trick. My urnal was full, I had already removed the external, and needed to empty. I connected a condom cath the usual way, but instead of putting it on my penis I wrapped the sticky part arround the funnel end and straight cathed right into the bed bag. JT From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Friday, October 13, 2006 1:42 PMTo: quad-list@eskimo.comSubject: Re: [QUAD-L] HANGING A BEDBAG I've seen some amazing rigs and rituals that people use for hanging bedbags so they fill with comfort and avoid back preasure. After 31 years I have this down to a simple matter of water always seeking the lowest point. When you lay in bed route the catheter over your leg and into a loop on the bed. The loop should be large enough that the line hanging down never drops below the bottom of the bag and the higher the more comfortable it will be. Those little green clips with rubber bands keep the loop from falling off the bed. As it fills with urine it creates a mild vacuum that actually helps condom catheters stay on better.This same vacuum also aids in draining the bladder and keeping it draining without any backup. I've seen hospitals and nursing homes where the bag line lays on the floor and then goes back up to the bag. This is uncomfortable and very likely to pull off external catheters. Gravity loops are working best when full of urine. Do not play with them and empty them as this eliminates its vacuum effect. john
RE: [QUAD-L] Does Your Chair Stink?
Now it does, I wheeled through dog doo. Yuck JT From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Wednesday, September 06, 2006 9:18 AMTo: quad-list@eskimo.comSubject: [QUAD-L] Does Your Chair Stink? Does You Chair Stink? You know what I mean, lol. Do you own one of those stinky/ smelly chairs? Wheelchairs are like shoes for their users and while many TABs have many different shoes for various occassions, chair users usually have only one electric wheelchair... and that's it. It sits to reason that one you have only one chair and spend the entire day in it, 7 days a week, its going to start harboring odors. From food, spills, leakages, medication and that nasty stuff you rolled over a couple of weeks ago that you thought was harmless. That odor, could be harboring some pretty dangerous bacteria. From the cushion, to the armrest, to the joystick or mouth and chin controllers. How would you de-louse your chair? Or do you really care.Who do you assist to de-odorize your chair. Cleaning the crumbs and spillages from your chair before the stinks begins. Does your chair stinks??? Now who's going to be the first to admit it, lol. Ask someone else. does my chair really stink... or smell? Best Wishes W
RE: [QUAD-L] What would you have done.
W- I guess that's what you get sometimes for being a good Samaritan. I personally have been burned but never that bad. That doesn't mean that I wouldn't help anyone I can. I have always been that way. JT From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Sunday, August 06, 2006 10:53 PMTo: quad-list@eskimo.comSubject: [QUAD-L] What would you have done. This week has been crazy. Let me try to explain Mr. X of New Jersey called a couple of months ago to tell me that he was coming to Chicago for a week to visit his aging Mother and celebrate her 100 year birthday and see a couple of Chicago baseball games before returning to New Jersey. His method of travel was AMTRAK. Mr. X is a 62+ C5 quad, trach user, prostate cancer and bad lungs that need mechanical cleaning 4 times a day. Mr. X chose to travel with his girlfriend which is 1/2 his age and his mentality. Mr. X doesn't wish to fly so its AMTRAK for him to Chicago. His arrival was supposed to be a week ago Friday at 9am. He actually arrived 3 hours late and his lung cleaning broke down 1/2 way to Chicago.He uses a Permobil wheelchair and hehad 16 pieces of luggage 6 critical and 10 bags of clothes and tubes. No charger for his chair or cell phone. I proceeded to take Mr. X and his 1/2 x girlfriend to an assisted living center in a community North of the city. My plan was to leave the van with him to use while he was in town. I used public transportation to work my way back to my office some 65-70 miles away. 6 days later, I had heard nothing from Mr. X or his 1/2 x girlfriend. I call the center where I dropped him and discovered that he left the center the day after I dropped him and hadn't return, but my van was still at the center. I called his 100 year old mother only to discover that he was admitted to the city hospital on the past Saturday and was still there. I used public bus to find the hospital that was 3 miles away and yes he was there in the pulmonary ward and isolated. He missed his Thursday Amtrak departure and the hospital didn't know when he would be released because of his condition. Mr. X made a command decision that he would release himself the next day and asked me to be at the hospital at 9am to help 1/2 x to remove his luggage from the center he wasn't staying at. The center bill had been prepaid so he didn't receive a refund. I headed by to the hospital with his 16 bags and he was signing the release papers against the wishes of his doctors and nurses. They were concerned that fluid would build up in his lungs during the 15+ hour return to NY and AMTRAK would not stop the train if there was a 911 event. You can imagine the tensive situation of this. He signed the paperwork anyway and was released... under written protest. I took Mr. X and 1/2 x and 16 bags to the AMTRAK Station 90 minutes before the train was to leave. There must have been 250 people standing in lines, on a Friday before the weekend, waiting to take the train to New York. I caught a red cap and loaded 10 tag'd bags on his cart and said that they were going to NY. The other 6 bags with critical needs I keep for the Xs to take on the train. 60 minutes later 1/2 x comes out of customer service crying and having a tissy fit. Apparently when they missed the train on Thursday, they thought that they would be rescheduled to the next day. AMTRAK didn't think that way and placed them on a train leaving "this" Thursday. So here's the situation for those who haven't kept up with this story. Every hotel and motel is booked solid for the Lollapaloza Music Fest. Mr. X and 1/2 x have no where to go and no place to stay. The Amtrak train leaves full without them and its 8pm in Chicago on a Friday NIght. He hasn't had his lungs suction'd and the sitution doesn't look promising. -- I take Mr. X and 1/2x back to the hospital emergency room and advise them that his running a temperature and needs his lungs cleaned. I got him re-admitted thru the ER and finally got to leave about 1am on Saturday. I called him today Sunday and asked how he was doing. The original cultures from his previous stay had finally come back and the bacteria was ID'd and Mr. X was on 3 IV drips. 1/2 x was sleeping by his bedside. I told him that I would call him Wednesday this week while I was on my way to St. Louis to see how thing were going. I only ask that you think of this ... the next time you plan on traveling. W
[QUAD-L] 8-2-06
I have been waiting to send a message to the group. Last year on August 2 I was reading the 12 pages of advice, most of which I received from the quad list. I don't post very often, but most days I read all of the messages. I learned a lot in the past year, especially not to lose hope. Instead of being sad or withdrawn this year on the second anniversary of my accident, I spent it with my new love. It was her birthday and I told her I had to go to work, even though I usually work from home on Wednesdays. I had her convinced that I wasn't going to do much for her birthday. Instead of going to work I went to a few stores, purchased several presents, balloons, cards, flowers, two cakes, and a bunch of her favorite foods. I decided to make the most of the day and be happy to be alive. Just thought I'd share, since somehow I feel like I know most of you guys. Thank you for being there in your own way. What a great support network. Bye for now JT C6 quad, two years post-, August 2, 2004
RE: [QUAD-L] What's out your back door down the street?
Me too only I live in the adirondack park, NY. JT -Original Message- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Tuesday, July 11, 2006 7:41 PM To: quad-list@eskimo.com Subject: Re: [QUAD-L] What's out your back door down the street? I'm lucky - we have woods and a stream behind us (County property.) The area can't be developed, because it's a flood control area. Only problem is too many deer. Alan -- --- Posted by alanh77[at]comcast.net using MR/2 ICE Newsreader #564 Proudly using eComstation 1.21 (OEM OS/2) BBS - The Nerve Center Telnet FidoNet 261/1000 tncbbs.no-ip.com ---
RE: [QUAD-L] Comebacks_Re: Quality of Life and SCI ~~ Huh?
It's a choice. -Original Message- From: KK Batte [mailto:[EMAIL PROTECTED] Sent: Sunday, July 09, 2006 5:58 PM To: [EMAIL PROTECTED]; quad-List@eskimo.com Subject: Re: [QUAD-L] Comebacks_Re: Quality of Life and SCI ~~ Huh? The one I get most often is - How can you be so happy?
RE: [QUAD-L] Who lives where?
Bloomingdale, NY somewhere near Lake Placid, in the heart of the Adirondack Mountains. About 11/2 hours from the Canadian border. From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Monday, June 26, 2006 4:06 PMTo: quad-list@eskimo.comSubject: [QUAD-L] Who lives where? Hi All, I was wondering if anybody from this list lives near me. I'm in Parsippany New Jersey, 10 miles from Kessler Institute. Where do you all live any way? Bobbie
RE: [QUAD-L] My new power chair cost $19,000
Invacare storm TDX 3, $17,000. From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Saturday, May 13, 2006 5:36 PM To: quad-list@eskimo.com Subject: [QUAD-L] My new power chair cost $19,000 I got an Invacare Storm Series MKIV Gearless Brushless tilt recline. I LOVE it but can't believe how much it cost. I went to my insurance agent to put it on my renter's insurance. I plan on using it at least 10 years like I have other chairs. I can't imagine what new technology will be out there then. Do you guys know how much your chair's cost? Bobbie
[QUAD-L] keeping in touch
Dear Quad List Here's my attempt at catching up with everyone who's important to me. The first big news, if you haven't heard, is that I have a job working for the local Center for Independence. My job title is independent living specialists, some of the things that I do for work pertain to establishing consumer directed care. Whereby people can't hire their own personal attendants. I will be traveling to Washington DC in May for conference with the National Council for Independent Living. This is almost a weeklong event that will include activities such as seminars on independent living, a march on the capital, and meeting with government representatives to advocate for people with disabilities. One of the other objectives for the Center is to organize and create a guide to the Tri-Lakes for people with disabilities, so that visitors with disabilities can know what services are truly accessible. Another change in my life that has made a huge difference... I met someone, her name is Floreen. She is quite possibly one of the best things that has ever happened to me, and definitely since my accident. Even though I have only known her for three weeks, give or take, we are very happy together. She has a special ability to see me as a whole person, not as a quadriplegic in a wheelchair. We seem to be a perfect fit in a lot of ways. We have been in the same social circles for a long time. It is amazing that we hadn't met sooner. As fate would have it, we met at just the right time. Ever since my friend Melissa decided to move out, I was faced with many challenges. I wasn't sure if I would be able to keep my home. I called on many people for support. Shelly, from the independent living Center was trying to find me a backup caregiver. She obtained a list of people that work as personal attendants in Clinton County, Floee was on this list. I spoke with her on the phone on March 6 we arranged for her to meet me the following Wednesday. She came back on a Friday so that Melissa could show her around, and she could learn how to help me in the morning. The rest is history; we can spend hours talking about everything under the sun. Smiling to the point where our cheeks hurt. My house has never been cleaner, she is an excellent cook, and we have already been for several walks. She gets along very well with Jaron and Fox. She is having trouble right now with her ex, and the custody of her two children, Casey and Madeline. I have not met them yet but I can already tell she's a great mom, and once the courts get involved I am positive she will get at least joint custody. Right now she has a Ford Explorer which is impossible for me to transfer into. But she's talking about getting a car so she can take me places; spring fever is in full effect, I can't wait to get out of the house. I hope this generic message isn't too impersonal, but I can't think of a better way to keep touch. All the best, JT
RE: [QUAD-L] More on Transfers
Dear Paul. My name is Jason Thurston, I am a 5/6 incomplete. I am able to transfer from bed to chair using a slideboard, when I go from chair to bed I am able to lift my legs using custom made leg straps. I always have someone spotting me,so most of the time I don't bother. Practice makes perfict:)... I am 1 1/2 years post and am ready to push for major independence. My leg straps go across my thighs, there is another strap that velcroes around my ankles with a strap connecting the two. Feel free to inquire more... Yours in quaddom, JT p.s. Does your foundation still have funds available? If so would it be appropriate to apply for an easy stand ? -Original Message- From: Paul Jacobson [mailto:[EMAIL PROTECTED] Sent: Tuesday, April 04, 2006 7:58 PM To: Brien; ~LittleQuad~ Cc: Quad-list post Subject: [QUAD-L] More on Transfers I'm a c5/6 complete as of 11/05/03..I use a slideboard and can totally transfer.except I need help with my legs when I transfer from the chair to the bed. Can any c5/6's get their legs into bed independently? If so, how do you do it? Thanks!! Paul - Original Message - From: Brien [EMAIL PROTECTED] To: ~LittleQuad~ [EMAIL PROTECTED] Cc: Quad-list post quad-list@eskimo.com Sent: Tuesday, April 04, 2006 3:09 PM Subject: Re: [QUAD-L] Transfers Chairs I transfer into a power chair. With the armrest all the way back and behind the cushion, there is no obstruction to sliding directly onto the cushion. What do you mean about legs what legs? Here is the url for my chair notice the footrests are not in the way at all http://www.invacare.com/cgi-bin/imhqprd/inv_catalog/ prod_cat_detail.jsp?s=0prodID=TDX5catOID=-536885369 Let's figure this out Brien On Apr 2, 2006, at 12:34 PM, ~LittleQuad~ wrote: Those of you who transfer, I'm assuming you are in manual chairs? What kind do you use? I am obviously not going to be able to do it into a electric wheelchair. The legs are like 8 lbs each! Thanks
RE: [QUAD-L] Hours
I'm very fortunate to have a longtime friend rearrange her whole life, in order to prevent me from going into a long-term care facility. The county that I live-in doesn't offer choices for caregivers, even though she had previous experience as a CNA. And after several months of tests and what not, she was finally hired by the agency to fill seven hours per day. She is only off every other weekend. The agency has their own rules, and as Medicaid gets billed 30 plus dollars per hour, the actual PCA's only get eight dollars an hour. As I pursue my position at the local Independent living Center one of our objectives is to establish consumer directed care in our county. If anyone has information, or is willing to share their experience in establishing such a thing I would appreciate any advice I can get. Thank you, JT C6 incomplete since 08/02/04 -Original Message- From: Dan [mailto:[EMAIL PROTECTED] Sent: Monday, February 20, 2006 9:03 PM To: quad-list@eskimo.com Subject: [QUAD-L] Hours I have a question. What's the maximum numbers of PCA hours a day can you all receive including those of you living in Canada and other countries? Dan
[QUAD-L] Great News
Great News; My prayers have been answered, the best opportunity since my injury is staring me in the face. I have been involved with the local Center for Independence. I have been attending board meetings since June; I needed three in order to be voted in. Now there is a vacancy in the staff. This will force me to give up my board status, but the way like to put it, I will be able to make a difference everyday, compared to one day a month. On Friday afternoon I found out that I need to go through the whole formal hiring process; application, resumes, and interview. But I'm told that I have nothing to worry about. Anyhow... I'm working on a cover letter/mission statement. I would appreciate some input because I don't want to step on anyone's toes, and I do want to be politically correct. Remember this is still a rough draft, JT C6 quad 8/2/04 Operation Back on My Feet The goal is Independence. And Equal opportunity My challenge began not so long ago. Now I see the world in a different light. n A Life of Observation. n From ground zero, with endless setbacks. n Yet... for all the effort put forth, I don't feel obligated, instead I am excited and enlightened to help make a difference. n I want to help people achieve their own highest level of Independence. I have always wanted to be someone that made a difference in people's lives. I've been blessed with the support of countless friends and relatives over the years and more recently; physical and occupational therapists, nurses, daily caregivers - nurses aides, as well as neighbors, and many strangers. I scratch my head at how so many people spend years in nursing homes. The numbers are only growing, and the money taken out of everyones paychecks for Social Security is being chipped away every single day. My point is this, right now I'm facing hard times. I want to share, and help other people who may be in similar situations. To reassure them, we can all make a difference. Every person has potential, when given equal opportunity, and appropriate placement options. I dream of a place where people can share knowledge, are networking, and helping each other. One hand washes the other, they both wash the face! Any willing person is able to contribute something. Not all of the important contributions involve money. Look around your neighborhood, there are lots of good people. Sometimes it seems people don't want to be bothered, but if everyone does a small part we all benefit. They say it takes a village to raise a child. I remember being in the intensive care unit, when I met my first occupational therapist. She was fairly stern and her message was; You are going to have to learn to be your own advocate. At that time, I didnt know much about the word 'Advocate'. If you're receiving this, it is my way of networking Independent living. I don't have all of the answers, but I am determined to find as many as I can to advocate change. There are more options than people realize. Estates are getting cashed in for nursing home care. When if more systems were in place people could stay in their own homes and have nursing visits. This would make more sense and it would be less expensive. Create and/or network support groups and clubs for families and caregivers. I have new purpose. What choices do I have? How can I find a way to contribute that will allow me to keep and live in my own home? How do I get involved with an organization that will allow me to facilitate my own goals? /foundation/not-for-profit/equal opportunity/equal contribution And help the circle of support keep growing.
