Re: [QUAD-L] Sore
Larry, One thing nobody mentioned is to sleep at night with your legs in a frog position. That is with your knees bent and legs apart. It will keep air circulating and your skin dry in your sensitive area. Every little bit of goodness helps. Good luck with that tough decision. Do you live in the DC area by chance? Sandy
Re: [QUAD-L] Who Do I Complain To?
Actually I disagree. Start with the hotel management. If the response is inadequate, then go to the chain CEO. If this is inadequate, then go to the press. If you initially antagonize and threaten the hotel, you are less likely to be able to amiably work with them to fix their problems. To them you are the face of the disabled, you can present yourself as a team player or as an a**hole. Sandy
Re: [QUAD-L] How Do You Read Books?
Naomi, I sure hope you figure something out. It sounds like I'm the only one who uses an automatic page turner. For me the investment was worth it. I use it everyday and read 1-2 novels a week in addition to magazines. Let me know when you're reading again, I'd love to discuss good books. Sandy
Re: [QUAD-L] How Do You Read Books?
Hi Naomi, This is the automatic page turner I use - _http://www.touchturner.com/_ (http://www.touchturner.com/) . If you have no arm movement at all like me, it has a sip-and-puff switch option. I eventually changed this switch to a motion sensor I operate with my cheek. I love to read too, I'd be lost without a way to read everything I enjoy. Sandy
Re: [QUAD-L] My 50 year birthday
Happy birthday, Danny! I too just turned the big 5-0 recently, it's really just another year, another number. But enjoy your day! You are in my thoughts Monday. Sandy
Re: [QUAD-L] min oil
No, but have you tried natural Senna? Sandy
Re: [QUAD-L] New 2006 medicare wheelchair codes
An excellent letter! You write exceptionally well Bill! Plus you've taken action against an injustice instead of just taking it laying down and doing nothing. I'm shaking your hand! Sandy
Re: [QUAD-L] Hoyer Lift/Sling
All techniques don't work for all people. Two techniques were described here that work for us - using your clothing to push you back in the chair and pushing your knees. I've used both and find pushing the knees infinitely more comfortable and much easier for my aides. But both work. Simply use what you're comfortable with. Who had knee and shoulder problems, W, the aide or quad? What have you used, W? You seem so opposed to the knee technique. Sandy
Re: [QUAD-L] Hoyer Lift/Sling
W, your perspective is as a caregiver rather than as a quad, right? Sandy
Re: [QUAD-L] Doctoral Research
Is your research and survey for spinal cord injury survivors only or does it also include quadriplegics from other causes?
Re: [QUAD-L] Hoyer Lift/Sling
That's how I do it, someone pushes on both knees as I sit in the chair. Works every time. And you don't have to readjust clothing and wedgies out of your crack. Sandy
[QUAD-L] Fwd: [VENT-L] my disability museum is taking off...MAYBE
---BeginMessage--- We need your letters! Take a few minutes and write a letter to Nassau County's Director of the Office o/t Physically Challenged. Let its director, Don Dreyer, know your ideas and feelings about this idea for a museum about disablity. His office is very excited about this idea, but Mr. Dreyer needs to hear from you and let the powers that be know that others want this museum to be created. so take a few minutes. Send a letter to: Nassau County Office of the Physically Challenged Don Dreyer, Director 60 Charles Lindbergh Blvd. Uniondale, NY 11553 or you can email Don's office via his assistant, Frank Murtagh at: [EMAIL PROTECTED] But don't delay. Do it today. And check my DREAM OF A DISABILITY MUSEUM webpage at: http://www.geocities.com/ram9872002/dremmuse.htm -- Bob Mauro Via his ezrite rmauro Web Mail WEBSITE: http://www.geocities.com/ram9872002 ---End Message---
Re: [QUAD-L] capuchin monkey
I saw the report too, interesting. If it's not new, W, why aren't they more available and known about?? Sandy
[QUAD-L] What about a Disability Museum?
A guy named Bob Mauro has a dream to start a Disability Museum. And he's in the process of making it happen. He's looking for ideas and suggestions. See the website - _http://www.geocities.com/ram9872002/dremmuse.htm_ (http://www.geocities.com/ram9872002/dremmuse.htm) Sandy
Re: [QUAD-L] What about a Disability Museum?
The link must have a temporary problem. I accessed it earlier today but not able to now. Please try later. Sandy
Re: [QUAD-L] Environmental Control Units - Generators
In my home, all my essential medical equipment is plugged into an outlet that is backed up by the generator. So when the power goes out no one is frantically looking for the right outlet. Everything automatically comes on via the generator. Makes more sense to me. Sandy
Re: [QUAD-L] Environmental Control Units (mattress)
But be careful about putting too much between you and the mattress, it defeats the benefits of the mattress. Sandy
Re: [QUAD-L] Environmental Control Units - Generators
There are many types of generators. When we invested in one about 3 years ago, we decided to provide backup power not just for my essential medical equipment but for most of the house. It has a direct feed into our gas line and automatically turns on during an electricity power outage within 10 seconds. It can also be tax deductible as a medical necessity. Ours is a Guardian. Sandy
Re: [QUAD-L] Environmental Control Units - Generators
I don't live in a nursing home. There are no such requirements in a private home. Of course you can mark your outlets as emergency if you are anally inclined. Our generator powers the refrigerator, freezer, microwave, numerous outlets, in addition to my ventilator, suction machine, and mattress. Sandy
Re: [QUAD-L] Tea for me
They were regular tea bags that were thoroughly wet through and through. Sandy
Re: [QUAD-L] Tea for me
This may sound weird but I was told to put tea bags on my sore nipples when I first started breastfeeding (many years ago). It worked. Don't know why... Sandy
Re: [QUAD-L] Iraq Study Group Report
W, what is the point? We live in a democracy and funds are allocated in a somewhat judicious manner. You asked about the Iraq war, I ask, hypothetically, about money used for space exploration, climate predictions, all sorts of memorials, zoos, historical preservations, etc, etc, etc. It's the price we pay for being an advanced, cultured society. The disabled get some funds but certainly not ALL the money. Sandy
Re: [QUAD-L] Agency Help Over the Holidays
Dave, what's the CBA program?
Re: [QUAD-L] Services?
Here's an article about Special Needs Trusts from Quest. _http://www.mdausa.org/publications/Quest/extra/qe13-6_special_trusts.html_ (http://www.mdausa.org/publications/Quest/extra/qe13-6_special_trusts.html) Sandy
[QUAD-L] Agency Help Over the Holidays
Hey all, I rely on agency help for all my care. Of course nobody wants to work on major holidays like Thanksgiving, Christmas, and New Year's, especially with the agency. Do any of you use agencies that guarantee coverage or is your coverage ultimately your responsibility? What do you do when you have nobody? The holidays are suppose to be happy times but it's tough when you don't have the help you need. Sandy
Re: [QUAD-L] Fwd: A Different Christmas Poem
Beautiful!! I am having 3 young Marines here for Thanksgiving dinner, they are too far from home to enjoy the holiday with their families. Yes, remember our young men and women serving our country! Sandy Stuban Lieutenant Colonel, Retired US Army
Re: [QUAD-L] Sorta back
Welcome back Dave and keep fighting. I think we all know a little bit about being way down in the basement. Keep a good attitude, it's good for the immune system! Sandy
Re: [QUAD-L] Under the weather
Mydoctor also orders antibiotics for me to keep on hand at home for a UTI. When I have to use it, I email her and she documents it in my record and sends another antibiotic for next time. We have a great relationship. And yes, I get the flu shot every year, just had it Tuesday. We all should get one! Sandy
Re: [QUAD-L] I'm back : ) ~
Mark, I believe it was a doctor not a nurse who pulled Bobbie's skin off. Give the blame to the right knucklehead. Sandy
Re: [QUAD-L] Specialty mattresses
Here's what works when you have a bed buddy. I use a single specialty mattress on a simple hospital bed frame. Then I have aregular single bed pushed right beside which makes a king size bed. I use single fitted sheets for the two beds, and king size upper sheets and comforter on top to cover both. With my hospital bed frame I can make both beds exactly the same height. Now all I need is abed buddy! Used to have one but... Sandy
Re: [QUAD-L] Hospitals
All I can say is every time I have spent time in the hospital, I have been terribly disappointed. I'm sure all of us have horror stories. My greatest disappointment is that both doctors and nurses really don't know how to address the daily needs of quadriplegia or appreciate the consequences of their inaction. THEREFORE we remain our own best advocates. Always. Never assume someone will take care of everything. We must always ask questions, insist on quality, and direct those that need it, whether it is a doctor or nurse or someone else. Sandy
Re: [QUAD-L] audiobooks-public library
Ours in Virginia have the same services - lots of audio books and free delivery for the disabled. Check the website of your county library. Sandy
Re: [QUAD-L] Re: Assistance for a mobility van
Dennis, You could check with the ALS Association Chapter in your area. I know your son doesn't have ALS but many many families advertise selling their vans through their local Chapters (ALS has a very high mortality). My local Chapter advertises 6-8 vans every month. You can find the Chapter in your area here - http://www.alsa.org/. I hope this helps. Sandy
Re: [QUAD-L] Does Your Chair Stink?-spray bleach
What brought this up, W? Are you around a smelly chair? Keeping your chair clean is like keeping your house clean. Just do it! Sandy
Re: [QUAD-L] Does Your Chair Stink?-spray bleach
And if it's impossible to clean your house yourself, someone does it for you, right? The same applies to your chair. Your chair is your house and reflects your character to the community. Sandy
Re: [QUAD-L] Seat Cushion
Based on what everyone said it sounds like air is the way to go as opposed to gel, foam, or sand. Right? Sandy
Re: [QUAD-L] pressure mapping
This article is excellent! I take it you've had this done. What about the others? Sandy
[QUAD-L] Seat Cushion
Hey gang, I need a new seat cushion. I don't like what I currently have. What do you recommend that's REAL good? Thanks as always! Sandy
Re: [QUAD-L] Where Is Everyone?? ~ sweating or freezing
Silas, I get so cold too. In the bathroom I use a portable heater. And when I feel chilled to the bone, I use a heating pad over my upper legs and lower abdomen in my chair. That gets me back to normal! Sandy
Re: [QUAD-L] Hemorrhoids
Remember if you take iron it will make you constipated so anticipate it by taking something. Constipation will only aggravate the situation. Sandy
Re: [QUAD-L] Van Issue
Thanks Lori! It's good to know it's not just me! Sandy
[QUAD-L] Van Issue
I have a Dodge grand caravan with a lowered floor and an electric side ramp (Baer). It is set up so I sit in the passenger position secured with EZlock. When I first got it I had a smaller chair. Now I'm having trouble turning the corner from the ramp to the passenger position. Any suggestions? Sandy
[QUAD-L] Re: Van Issue
Sorry, it's a Braun. I'm going in face first, maybe I should try backward up the ramp. Thanks Wal! Sandy
Re: [QUAD-L] Re: Van Issue
Yes I have the kneeling operation. Going in backward is worth a try. I'll let you know! Sandy
Re: [QUAD-L] Let's see if anyone is awake
The same reason they call congress CONgress instead of PROgress. Sandy
Re: [QUAD-L] What would you have done.
He sounds like he has a death wish. Who travels without battery chargers? Plus most of us are tuned in to our bodies big time so he had to know his lungs were full of gunk. His actions and decisions make no sense. W, you have the patience of a saint! Sandy
Re: [QUAD-L] For all you animal lovers
It reminds me of a joke. Why do dogs lick their balls? Because they can! Sandy
Re: [QUAD-L] heritage
Stunt, are you serious?? Is this our W aka Wally?? Who is the lady in the chair? You are quite the sleuth!! Sandy
[QUAD-L] A Picture is Worth a Thousand Words
I would love to be able to associate a face with a name. Do any of you have a picture? Here is me and my son. Sandy
Re: [QUAD-L] heritage
W, why are you so enigmatic? Nobody knows anything about you but you always have comments and advise. You're not a quad but you're on this list. I, for one, would like to know your story. I'm all German. Sandy
Re: [QUAD-L] heritage
Ah, Baumholder. I spent 3 years in Augsburg in the Army. Sandy
Re: [QUAD-L] Religion and Politics on the quad-list
I think we should respect Jim's request. Sandy
Re: [QUAD-L] Anyone have any fun or vacations this year ?
I took a weekend trip to the Poconos for my sister's wedding. It was at a victorian bed and breakfast. I knew there were steps getting into the building and I was prepared to struggle with a portable ramp but when I arrived I was surrounded by four big (good looking) guys who carried me in my chair up the steps. I was so touched. And of course the wedding was beautiful... as all weddings are. Sandy
[QUAD-L] Wayward Spouses
Over the years I've noticed that spouses respond to our paralysis by either being 110% supportive or by checking out. That's tough. When I became paralyzed, my husband checked out. He lives in the basement and I sometimes don't see him for days. It took a long time to adjust to a situation I didn't want. Then there's the absence of touch. With ALS I can feel EVERYTHING, EVERYWHERE... I just can't move. So sex COULD be great but I lost my partner. Has anyone else had to deal with this? Sandy
Re: [QUAD-L] Angelique and Sandy and the girls
That's great Linda! There's more of us than the boys thought!! Sandy
Re: [QUAD-L] Angelique and Sandy
Yes Lori, I have noticed the imbalance of male to female. I'll do my best to shed some feminine perspectives, for whatever it's worth! Ha! Sandy
[QUAD-L] A Question For The Ladies
Obviously we sit on our butts all day. So when we get our period, it can be a real pain. Does anyone have tips to manage this a bit easier? (Sorry guys!) Sandy
Re: [QUAD-L] A Question For The Ladies
Lori, can you put them in yourself? Sandy
Re: [QUAD-L] Caregiver Expenses
Yes, I use caregivers extensively. Here is my situation if it will help. Level of injury. C1 vent Average caregiverhours weekly. 120 hours a week Hourly rate (or rates if different i.e. CNA versus RN). LPN $24/h CNA $14/h Source of payment (self funded, insurance, Medicaid waiver, etc). LPNs paid by the VA CNAs self funded
Re: [QUAD-L] Despite Bush Veto, Stem Cell Research Abounds
"Keirstead is working with human embryonic stem cells to treat spinal cord injury. He has received funding for his lab from Geron, which has an exclusive license of Keirstead's patents and aims to start human trials on spinal cord injury as soon as next year." Excellent!
Re: [QUAD-L] Stem Cell Bill Killed
Potential is the key word - whether 23 or 46 chromosomes.
Re: [QUAD-L] Stem Cell Bill Killed
If we talk about the "potential" of 5-day old, 200 cell, unimplanted zygotes, then let's talk about the "potential" of an individual sperm. Isn't it the same potential? Where do you draw the line? It's really pretty ridiculous. It's time to use common sense. Those ready-for-destruction zygotes should be used, it's immoral not to. Sandy
Re: [QUAD-L] About therapy
I'm wondering if anyone has ever been in a clinical trial. It does involve a certain amount of risk and the possibility of receiving a placebo. I did once. 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
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] 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] 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] I Wonder Why
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 everyoneelse. I have hope in my lifetime. Sandy
Re: [QUAD-L] make a call
You can watch and hear the live Senate debate on Cspan NOW at http://www.c-span.org/watch/cs_cspan2_rm.asp?Cat=TVCode=CS2
Re: [QUAD-L] Blame Game SCI Life
Personally I blame no one. The difference is do you passively accept your plight or do you actively pursue avenues that could improve their life? Everyone is different. Some are content to accept the status quo no matter how unpleasant despite the potential improvements. Sandy
Re: [QUAD-L] follow-up on community transport
Now there's an example of not passively accepting the status quo. Go for it! Sandy
Re: [QUAD-L] I Wonder Why-starts in the ER
Well, the alternative to being positive is being a miserable, sorry, negative pessimist. Life is too short. Chose. Sandy
[QUAD-L] I Wonder Why
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
I too have watched the research for 11 years. I know the difference between the scams and legitimate research. But I felt no hope in all these years like I do now. Something new happened last week that had never been done before. And I bet human clinical trials are not as far off as you think. Yes, I am excited about this. Is it false hope? I don't think so! Sandy
Re: [QUAD-L] Fwd: Stem Cell Vote Next Week!
This is important stuff! You know, last week Johns Hopkins reported "growing" neurons using stem cells... all using private funds. Imagine what could be done with public federal support! I just emailed my senators using LQ's link, it's easy. Do it! We have strength in numbers!! Sandy ALS 95, vent 01
Re: [QUAD-L] Bored, lonely mind needs to be occupied
Start a book club and invite people to your place. Sandy ALS 95, vent 01
Re: [QUAD-L] More PT for me
At your first session you should discuss JOINT goals. Like KK said, it's your body! Sandy
Re: [QUAD-L] Keeping track of everyone's personal information
But we are not all SCI. I really wouldn't necessarily go to a SCI web site just as most here wouldn't go to an ALS site. Maybe it's just better to include our basic info after our name. Sandy ALS 95, vent 01
Re: [QUAD-L] Fentanyl
I used Fentanyl patch for a short time and had no problems at all except constipation. Ha! Sandy
Re: [QUAD-L] Run of the Bulls produces another Quad
Yes it was a cow. Did you read this? http://hosted.ap.org/dynamic/stories/S/SPAIN_RUNNING_OF_THE_BULLS?SITE=OKTULSECTION=HOMETEMPLATE=DEFAULT
Fwd: [QUAD-L] Run of the Bulls produces another Quad
---BeginMessage--- Yes it was a cow. Did you read this? http://hosted.ap.org/dynamic/stories/S/SPAIN_RUNNING_OF_THE_BULLS?SITE=OKTULSECTION=HOMETEMPLATE=DEFAULT ---End Message---
Re: [QUAD-L] Quality of Life and SCI ~~ Huh?
I have found you can't live in the past. You can't dwell on what could have been or you will die of depression and a broken heart. In the short time I have been part of this group, I have made some interesting observations. At first I sat back and listened to everybody. I found all of us have strong convictions and strong opinions and strong personalities. And I believe that's why all of us successfully survive and LIVE with our severe disabilities. Others simply give up and die. About the infamous "quality of life" question everyone seems so interested in asking us, they should live in our chair for a day, a week, a month, a year. For me the key is all attitude and keeping busy. We must all keep fighting and searching for what makes us satisfied and content. It's out there somewhere! Sandy
Re: [QUAD-L] Re: reading stands/aids
Hi Kel, I love reading too but I have no movement below my neck. I use an automatic page turning machine but paperbacks don't work on it. The books that work best are hard cover library books that have been read many times. Here is the site - http://www.touchturner.com/ If he insists on reading paperbacks, maybe you can devise an easel, clip the covers open, and clip the pages open with clothes clips. I still use clothes clips on my books with the page turner to keep the book open and prevent it from turning too many pages at once. Good luck! Sandy
Re: [QUAD-L] RN- Quad
Thanks for letting me know, W. I haven't met Linda yet. I can honestly say I am still alive because I'm a nurse, an ICU nurse. The people who think nurses are "bad patients" are the ones who border on incompetence themselves. Here's an example of many I could tell you: a new "nurse" is with me, she takes off her shoes and socks and starts digging around her toes and toenails then replaces her shoes and socks. When I ask her to wash her hands before she suctions me, she laughes and I am a "difficult" patient. I guess you can tell this bugs me. A lot!! I know the right way to do things and I expect them done that way. Fungus in my lungs is unacceptable. Managing my feeding tube improperly is unacceptable. Messing up my ventilator is unacceptable. If this makes me "difficult" so be it. I have one caregiver who has been with me 3 years, another 2 years. The ones who find me "difficult" of course don't stay. They can take their incompetent self somewhere else. Yep, I'm pretty feisty! Am I "difficult"? Only to those who are dangerous to me. I'm not ready to check out yet so I will continue to be my own best advocate. Sandy
Re: [QUAD-L] Hello
Welcome Angelique! I am also a vent dependent quad, 49, living in Fairfax Virginia. I'm also an RN. We can talk any time! Sandy
Re: [QUAD-L] NEW TO LIST, KIND OF.
I think the idea of packing it is so it heals from the inside out instead of creating a pocket of pus. As it heals it will push the packing out. And... waalaa... Sandy
Re: [QUAD-L] Who lives where?
Fairfax, Virginia Sandy
Re: [QUAD-L] Mattress
Steve, Mine is a DFS 2. I can't exactly tell you how much it cost, I am a veteran so the VA paid for it. But I can give you an email address for a sales rep. [EMAIL PROTECTED]Sandy
Re: [QUAD-L] Quad on Vent Re-Intro
Welcome back, Rick. Where have you been? I am also a quad on a vent, but only since '01. There is an ALS chat room that is active and many of us use ventilators. Maybe you want to check it out - http://client1.sigmachat.com/sc.pl?id=144320. Anyway, it's good to meet you! Sandy
Re: [QUAD-L] Mouse for Disabilities
I operate my computer with a motion sensor placed next to my cheek - http://www.words-plus.com/website/products/input/istswtch.htm. I can't move anything else. I've used it about 6 years now and I'm very happy with it. Sandy
Re: [QUAD-L] How many collective years of SCI do we have here?
I don't have a SCI but I am a quad equivalent to C2. 11 years. Sandy [EMAIL PROTECTED]
[QUAD-L] The Overnight Trip
What do you guys do about a mattress when you make that overnight trip??
Re: [QUAD-L] Hey Dan, Meds Question
Amitriptyline can slow the gut and cause distention and bloating. I stopped it for that reason. Sandy
Re: [QUAD-L] working from home
I know specifically about Northern Virginia Community College, http://www.nvcc.edu/, a large school with about 38,000 students enrolled. But ask at colleges in your area. Even though their human resources department may not advertise a job opening as for online instruction, ask. Many are eager to hire adjunct faculty to develop and teach new online courses. Sandy
Re: [QUAD-L] Property Tax Exemption
If anyone lives in Virginia, this web site is very clear about who qualifies, http://www.fairfaxcounty.gov/dta/tr_re_faq.htm. All disabled
Re: [QUAD-L] working from home
Another job option is teaching online courses for colleges, universities, or community colleges. Many are transitioning to offer more courses like this to their studentsand are looking for adjunct faculty.
Re: [QUAD-L] Joystick alternative
Silas, It's very easy to set up and use but it's best to use where you don't move around too much. It's real sensitive so if you inadvertently move or are jolted around it will pick up every movement, intentional or not. Sandy
Re: [QUAD-L] Joystick alternative
It's an infrared motion sensor switch made by Words+. http://www.words-plus.com/website/products/input/istswtch.htmSandy
Re: [QUAD-L] Living alone and the future- slippery slope
One of the problems is we can't go to others' homes because they are not wheelchair accessible. So a couple years ago I started a book club and it's still going strong. They put it their calendar and everyone shows up and has a good time. Sandy
Re: [QUAD-L] Joystick alternative
KK, I use a motion sensor placed beside my cheek. Works great! Sandy
