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    Tweety - sorry for the difficulties you're having.

    Couple of suggestions...

    1. Have you tried to sell, trade or return the $32k wc? If not, why not?

    2. Concerning PCA's, have you put up flyers in your local hospitals? What are you paying them and for how long are they helping you each day? What are your expectations of them and they of you?

    3. Glad that you have an advocate but ultimately you probably realize that you're going to have to fight for yourself? You obviously can communicate via web or e-mail, have you tried these methods vs phone when speaking with docs, looking/organizing your supplies, transportation, etc?

    4. Transfers. What level of injury are you?

    5. Things being stolen and your ability to find/locate them. It sounds like you live in a two story set-up? If so, have you considered maybe living in a one floor / ranch style home?

    Sorry if my practical approach wasn't the emotional response you were looking for but like a typical male my 'problem solving' genes kick in when faced with challenges like yours.

    Good luck and try to solve your issues one at a time and before they get too big. It's usually alot easier that way.


      Well, the w/c is mechanicly fine, what and the seating system grat, but I live in a semirural area. Insteed of a midwheel drive chair, I should have been sold a rear wheel drive. I find the salesperson a nice guy, but he is not good at his job. He was a good wheelchair tech but when he moved up to sales, he does not know the job like he should yet. I think its the learning curve, and he is willing to learn. When i talk to the company, their attitude is "your tough luck!" and it was almost said like that. I will talk with Richard Chapman tomorrow about that and see what can be done.

      I do now recruit my PCA's from nursing schools, and hosptials, and they are the ones that work out well....learned the hard way. But ironicly the one that has been really good and in my corner has had NO training except what I have taught her,but she has that valued common sense..Essy...she is a treasure. She can also read people VERY well.

      I not only have damage to the cordia equina(sacral and lumbar area), but have RSDS for years and am in the late stages, had a brain injury since birth (a stroke) causing me to have mild CP (right sided ataxic CP), am legally blind, and have some other issues. So the combination has made it quite hard, but I guess I am a bit like a Timex, I take a beating and keep on ticking. Interstingly enough, the RSD and brain injury I guess now make me prone to AD....that is how I almost died that May a year and a half ago. We did not realize I was prone to it and I was in EXTREME pain and my blood pressure was sooooo high (?/217) they though I had had a stroke or anurism...very scarey. Boy did they check me out from stem to stern! At that time the damage to my spinal nerves and the cordia equina occured. Having that kind of pain plus the pain of the RSDS is almost umbearable at time, but you have to keep going. The biggest problem I have now is that my rotator cuffs are so badly damaged, and because I have RSDS that they cannot operate on them without causing me more problems, so they do not open that can of worms. I tell you, I look at my old transfer board and think I am going to be able to use it again...someday....I will love the day when I can retire the Hoyer.

      I think they were scared older teens, not yet "hardened" into that negative lifestyle. I know she comes from a good family, and may be the "black sheep". He rsister, I am told, is a very secent and kind person. The younger one (her cousin), I do not think was involved. She seemed sweet, but was just plain to young for the job. The older one, wheo was 17 1/2 was a cocky nasty little klepto that needed her butt spanked a few times. I think they got scared and realized I was not screwing around. I now take the hard arse approach with my PCA's. I have started from the very beginning expressing my expectations nicely but firmly, and let them know no funny busness will be tolerated.

      By the way, beleive it or not, the foley tugging thing was done by a registered nurse, who is no longer able to see well enough to put in a catheter. She cannot see my meatus at all unless I stick a lamp down there so she can see it. I was hoping the nurse would retire, but I have to somehow request a new nurse.

      Chris, your common sense practical approach is good, it is making me think things out carefully and take a logical, solve the problem approach. There is nothing wrong with it at all. I appreaciate everyone's support and style of approaching the problem, it gives perspective......thanks....
      Disability is not a medical problem with social issues, but rather a social problem with medical issues.
      Franklin D. Rosevelt


        Hello tweetybird, I'm sorry to hear how badly things have been going
        for you but if I learned anything from my sci it's that every man (women)
        is for himself, period. It's hard not to get bitter and angry but those are
        the emotions that will ruin you. Don't get me wrong, there is no excuse
        what-so-ever for being treated like that but spending to much time upset
        will cause one to lose sight of what is important. I'm sure you're tired of
        being told to "hang in there" but... hang in there. later.


        "it's never so bad that it couldn't be worse"


          I am so lucky to have the support system I do have. The social worker I have is GREAT! She was supposed to get me $500.00 to pay for some back oil bills, but she came up with $800.00, so I can pay up on the electric as well. I am soooo pkeased. Then there is someone is buying a very old Jeep I was at one time going to restore, but I need the money more. So I am pleased that I will have extra money to pay off a couple other bills. Then I will have the rest to buy some things I need.

          Then I am having my roof fixed finally. It turns out I need replacement of part of the sill. Also I have a broken rafter, which is going to be fixed, and a brand new cellar bulkhead, made of pressure treated wood. I am so pleased. They are some people from my church and the Knights of Columbus. I am so pleased. Then my PCA's husband said he would be willing to volunteer his help if he needed it, and the sales rep for my w/c said he would be glad to come and help too and donate some of the supplies. The Knights of Columbus are donating some supplies as well too. The jack is in place and they are slowing jacking the house up so that they will not break anything. So, he is comming by every couple of days and giving the jack a couple of turns, like an orthodontist lightening the wires on a kids braces every few weeks, but in this case it is days. So he is doing a propper job and is doing it for free.

          Richard Chapman, an advocate, is being of such wonderful assistance it isn't even funny. He is getting things set up for me to get everything transferred to the new doctor and is getting my medical transportation streightened out for me. The office manager at the new doctor's office is being wonderful. She is taking extra effort to get paperwork in before we have all my medical records transferred over, and I give her alot of credit, as she is pulling strings and being a big help. I just hope the new doctor is as kind. If Linda is any indication of what they are about, she will work out to be a good doctor.

          Then this evening, my PCA came in with a bag in her hand, and she had all kinds of cute orniments. She had a cute wooden train for under the tree, along with a little cranberry car, full of "cranberries". She also had a lobster trap to hang from the tree, with a little lobster in it! Its cute. She had a wooden donky on wheels and a wooden NOEL orniment for the tree. I have this place set up so it looks like it had a major elf attack. Major Chistmased home. Now I need to put up the outside lights. I have my snowman, snowman snow measuring stick, and candy canes up. I have iceicle lights and lights for the trees and barns to put up.

          So, you are right, I have to remember there are people who are good and genuinely care about us. Life goes on. I am remeving negative mean people from my life, and if it is by the force of the police, so be it. I am willing to uplift the sad and troubled, as they have done it for me.

          The foley yanker, an RN I might add, has been reported (not by me, but by a friend of mine who is a nurse), so I do not think she will be playing tugg of war with my catheter. I think she will be on her best behavior. If not, there is going to be a major kick in the butt to her. But things are looking up.

          I do want to thank all of you for your support and information. And the encourangement to fight back against the "abusers", or creeps. I am feeling alot better.
          Disability is not a medical problem with social issues, but rather a social problem with medical issues.
          Franklin D. Rosevelt


            YES!! I am SO happy for you Tweety! Just really makes my day to see someone so nice get the niceness they deserve returned to them! Thanks for the update! YOU have made MY day!
            "I just want you to know, it was the best time ever." J.F.F.


              Well, wibderfulness seems to turning sour again..well last night my new PCA came in (this is her second week), and we started preparing supper and she first off demanded a slice of toast (not the cheep squishy bread, expensive pumpernikel) and then we were talking about Christmas dinner, and she said to me, oh you have all these cangoods, so what are you worrying about, eat them. She is telling me that while she is sitting down to a Christmas dinner, I am supposed to have a can of canned soup? F that! She said she could cook, she cannot even boil water, and does not even know what boiling water looks like...dummy, and then hands me a cup of tepid tea and says it hot. Retard. She thinks she knows it all and is grating on my nerves. So, I've got to talk to her, and if it doesn't work...there goes another it PCA or PIA!!!???
              Disability is not a medical problem with social issues, but rather a social problem with medical issues.
              Franklin D. Rosevelt


                sorry for your troubles my pca are jewels. i have taught them to fcook they now know how to make bread from scratch no bread machine the old fashionway. brownies meatloaf. and now they are going to learn candy making
                from scratch.


                  Now I do have Essy, my morning PCA, and she is GREAT. I LOVE her, she is a GEM!!!! She has been working for me for about a year and what a fun, caring and common sense person. She can read people like a book. She and I truely get along. She teaches me Portugese cooking and I teach her wood stove cookery, breakmaking and old fashoned Yankee cooking. She is frugal and she knows how to save money and make things work. She is great. I told her I wish I could let the rest go, clone her and have her work for me 24/7. She is such a blast, and when we get the Deathmobile lawsuit over with and I have a replacement van, we are going on some adventures like, Plymouth Plantation, Sterbridge Village, The Big E in September, and other interesting places. We will even check out the livestock auctions together when the time comes...just for fun! She is fun. I just love her.
                  Disability is not a medical problem with social issues, but rather a social problem with medical issues.
                  Franklin D. Rosevelt


                    Hi Tweetybird,

                    Back in the 60s my family and I would visit my grandparents in Gates County, North Carolina. All she had in the kitchen was an old woodstove to cook on and a handpump for water. She could control the heat on that stove like it was gas or electric. She knew how to add and subtract the wood just perfectly using those heavy cast iron pots and pans to cook in. She made the moistest coconut cake in that oven that I ever ate. The house always smelled great from all the smoke and good southern food cooking. It's becoming a lost art I suppose.

                    Speaking of being frugal. My father would buy her plastic wrap and paper towels to use and she would wash them out and reuse them. Waste not want not. And she saved all her old bacon grease in jars out in the woods just in case another WWII came along and the arms industry needed the grease for war time production. The outhouse sure was a scary (and smelly) place to be!

                    She did all the laundry by hand too. Boiling the sheets on the woodstove in lye soap and bleach in a huge pot stirring it with a big ole stick. They were the whitest looking and cleanest smelling sheets you'd ever see or smell.

                    I sure do miss the good old days... and grandmom and graddad.
                    "Be kind, for everyone you meet is fighting a great battle." - Philo of Alexandria


                      lol woodburning stove had for years now propane thank goodness . i can raise heat with thumb .i do miss the smell of it though . never really cooked on unless you call throwning the pot on and letting beans cook. lol i have always had a washing machine and dryer thank you very much.

                      you know it does make you wonder how disabled people did in the early part of this century


                        I have both the electric stove and the wood cooker. I cannot seem to cook on the electric stove, except for the oven. It is great for running the canner when I can the vegies comming from the vegie garden.

                        I love low tech and use high tech (the internet) to learn about low tech ways of doing things....its kind of a thrill to see if I can be as least dependent on the infrestructure as I can. Like if the power goes out, I have lights, electric (genny), a great wood stove to heat and cook. and a composting toilet system in case I cannot use the standard toilet.

                        I also like to find uses for things that others would throw away...God, it sounds like my place is a mess, its not. But, for example..cardboard from breakfast cereal or crackers is perfect for winding the garland and strings of beads to store after Christmas. I save large envelopes to reuse, works fine. I take the backs of paper that would otherwise go to the landfill. If it is the right size, I can use it for paper in the printer for things that are not going to be sent out, but rather used by me. Other is used as "scrapies" that can be used to jot down notes, phone numbers etc.

                        Heck, I actually have been having alot of fun with it.

                        I really want an outdoor clay oven and started building it, but have not had the money to finish it. I have the foundation at the right hight for working from my chair.

                        I have more plans and am working on them, and am excited about what I plan. I just need a part-time job to help pay the bills.
                        Disability is not a medical problem with social issues, but rather a social problem with medical issues.
                        Franklin D. Rosevelt


                          Hey, Tweety -
                          Tell us about your touch and goes! Were you soloing?
                          I'm a pilot, my wife is complete T5 due to a botched back operation last June. She used to love riding in the Skylane I have a 1/4 share in. There's no way I can lift her into it now, besides, even small bumps would cause her too much pain. With caring for her (and paying for it), my flying has nearly come to a halt.
                          You know, my wife's nurse told us about a PCA who pulled out someone's Foley. Ch#!$t, what a mean thing to do. Gave me the shivers.
                          We're also rural in a 2-story house (+ basement), a downstairs room that was our library is now her bedroom; we're putting in a roll-in shower & she can't wait to have a shower after 6 months of bed baths. We haven't yet found a PCA; my son has taken off from college & is doing most of the the bed-chair transfers, as I'll hurt my back if I do too many. We also have a Hoyer-Partner lift I use when he's not around.
                          It sounds like you're pretty active - you're lucky to be able to be like that.
                          I hope the new year brings you (and all of us!) better health, recovery, and happiness.
                          - Richard



                            I used to take flying lessons as I was working on getting my ground school instructor's licence, but I had to let it go as it is to expensive now that I am jobless and own a house. I used to fly a Cesna 172 and loved it! It was out of Marshfield Airport and I miss it. But, life goes on.

                            I have cleared out all but one of the bad PCA's and am in the process of getting rid of her. We are looking for another good one, because replacing a bad one with another bad one is not going to work. The devil you know is better than the devil you do not that is what is happening in the PCA relm. All my other PCA's are pissed at her and as soon as I find someone with half a brain cell she will be gone. I liketeam players, and she is a loaner and does what she wants regardless of others.
                            Disability is not a medical problem with social issues, but rather a social problem with medical issues.
                            Franklin D. Rosevelt


                              Tweety -
                              I just looked at your profile - we (my wife, you & I) seem to share a lot of interests. We moved out here to an old farmhouse because my wife loved gardening, animals and so on. Our first 2 children lived on goat milk; we also had chickens. Now we just have a few cattle for beef, and the weeds have been taking over rapidly. I used to be K7NEZ, but let it slide years ago.
                              - Richard


                                Tweetybird, my brother is going through the very same thing!

                                Hi Tweeybird, I swear if I didn't know better I would swear my brother wrote this article that you have written, he is and has been going through the same things that you are experiencing, especially the PCA situation. His current PCA is always mistreating him. Last month he left my brother alone sitting in his wheelchair for two days. The past couple of days he hasn't fed him anything. My brother hasn't eaten in 3 days because of this idiot! I am sure there are a lot of other things he has done in the past too numerous to mention. The problem is finding a new PCA to replace this one. All the people that apply are either women that cannot lift my brother or people that don't speak english, or idiots like the one he has now. It's heartwrenching to watch this go on for as long as I have but I really don't have any avenues to go to. This world just doesn't care enough about physically challenged people to do anything for them. To put it quite mildly I am royally pissed off but don't know what to do about it. Do I speak to my government about it and how do I go about getting things changed to make a difference. Just because people cannot walk doesn't malke them disposable yet that's how my brother get's treated all the time and it angers me to no end. I seriously want to beat the crap out of his PCA but my brother won't let me because then he will have no one to put him in and out of bed or feed him or take him to the bathroom, not that this animal of a PCA is even doing that these days. GOD I AM ANGRYYYYYYYYYYYYYYYY! FRUSTRATED! Thanks for letting me vent and know that you are not alone.

                                Originally posted by Tweetybird View Post
                                but, here is the thing. God, I feel like I am whining, but to put it in simple terms, ever since this has happened to me, I have NEVER been treated like such crap as I am now, and I have tried being optimistic, looking at myself for incurring this wrath or whatever....

                                Well, I have been promised by multiple agencies adaptive equipment, and the lead around Robinhood's barn and never got anything. I ended up with a wheelchair that is inapprpriate for my lifestyle or where I live. Its basicly useless. (Medicare spent $32,000.00 and it just sits here) I have been abused by PCA's, doctors, nurses (yes, one deliberately yanked on my foley as hard as she could because she was PO'ed because she did not know how to insert it correctly, I'vwe had another tear my skin tearing tape off me.) I have been robbed multiple times by PCA's. I have had my doctor kick me to the curb and not refer me to anyone because I required to much paperwork...just left me abandoned, and I have had unreal problems finding a new doctor, or even getting there. I was totally ripped off by a van dealership and first it was a lawyer dragging his heels, now its the courts taking forever to give me a court date. I have been accused of lying by the electric company that I had a severe disability, and they almost refused my hardship application. I had someone deliberately remove the pest repelent device I had installed and almost all of upstairs was destroyed by mouse urine and fecies, chewing etc. I was at one time dumped off medicaid and have incurred a mess of medical bills that I am going to be paying off for years.(I am now back on it but am stuck with the bills) I have had several agencies try to stuff me in a nursing home...I hate institutions and am almost militant about my hatred for them, I've even dumped "friendships" with people I knew for 20 years over it. Its been one thing after another, and I hate getting rude with people, and hate sounding like I'm having a major pity party, but I am going to be blunt...people have been in general AWFUL to me. Have others here been treated like nothing but a blob that has no real right to exist, or have any inteligence at all, or try to get ahead and function as normal?

                                I get frustrated with the disability, but I can deal with it, its people that have really stunk. I can say a few good friends or social workers have been of some big help, but they cannot do everything or solve every problem. They are only human. But what really puzzles me, confounds me and really hurts is that I get treated like a nonentity until I get a lawyer, the police, a legal advocate, or sue them that I get any real action. Why? What can I do about it?

                                I hit bottom today when I realized and saw what has been done to me. I have tried to get over it and celebrate the season with decorating for
                                Christmas etc. But as I clean up I keep finding more and more and more....Am I crazy, or a winepot...or is this normal? What is wrong? Me? I've done all those recomended things. I have stuck to my ground and been persistant. I've reached a point where I no longer can take it. I guess you could say I am at a fork in the road and do not know which way to go.
                                I cannot afford to replace the items. I cannot get out to get the items. Some of the items I had taken are not available in this country.
                                Also why are PCA's not trained, licenced, or have some way of tracking them and forcing them to be accountable. These are people we let into our homes, trust with our bodies adaptive equipment, and our medical devices and supplies. They should be required to be accountable....someone please explain......
                                If this sounds like a rant or ramble, it sort of is, but also I am looking for an answer, and if those that have high level injuries especially, can add to their experience and what they did, it would be a huge help.