Tagged: patients Toggle Comment Threads | Keyboard Shortcuts

  • Kimberley 11:17 am on August 6, 2011 Permalink | Reply
    Tags: bus, , , , outing, patients, , , ,   

    Power Wheelchair Fitting and The Royal St. John’s Regatta 

    The power wheelchair fitting was done this week.  There is so much more involvement than with a manual chair.  My arm length was even measured.  They are still not entirely sure they can get me a power wheelchair although I need one because I can’t see, but I think the fact that the OT finally contacted the guide dog school I got Sophie, my first guide dog from has helped.  I had been telling her to contact them for quite a while now, but she only did after contacting a school in the UK and being told about the other school by them!  It’s messed up, but I’ve learned how things work here a long time ago.  You take all sense and throw it out the window, then whatever is left gets done!

    On Wednesday evening, I went to the 193rd running of the Royal St. John’s Regatta with three Recreational Therapists and four other patients.  It’s the oldest continuing sporting event in North America.  It was misty when we left the building, and by the time we got to Quidi Vidi Lake (which happens to be very close by) it was already starting to rain.  After exploring the area a bit to see what booths were around the RT that was with me found us a good spot at the starting/finish line and we waited in the rain for the race to start.  We were cold and wet (we both only wore sweatshirts) so I ended up going back to the bus where two of the other patients were waiting.  They didn’t even get off!  (Maybe they had a bit more sense than the rest of us lol!)  As one of the patient’s husbands, who pushed me back to the bus and I waited to get on we heard the starting pistol.  Once I was back in my room I realized that I hadn’t felt as happy to be cold and wet and tired in a very long time.  It felt good knowing that it happened because I was outside!  The RT brought me back some nachos and I picked at them until I fell asleep.

    • Chloe 12:07 pm on August 6, 2011 Permalink | Reply

      Simply getting outside can be so important for maintaining one’s mental health. I’m glad they seem to be getting this part right despite so many other failings.

      Progress on the electric chair is good too. No matter how painfully slow the process is, it’s better than complete stagnation. Sorry about the “electric chair” nomenclature. I have a friend of 40 years with MS who always refers to his transportation mode in that manner! It feels weird for me to use any other terminlogy. I’ll stop if it bugs you!

      • Kim & Duke 2:14 pm on August 6, 2011 Permalink | Reply

        It definitely can! It is good, although it’s not looking like it will move any further along until at least September. Then there’s any number of “issues” they will come up with along the way, the possibility of having to rent one first, the ordering, the demo, then the final chair.

        LOL the electric chair thing was fine. You just reminded me of being in the RT gym when they put the “shackles” on! They put things around my wrists with loops on them so I can get hung from (I mean hooked up to) the pulley system.

        • Chloe 5:39 pm on August 6, 2011 Permalink | Reply

          Shackles, hanging AND the electric chair! They must regard you as a particularly dangerous inmate.

          • Kim & Duke 6:21 pm on August 6, 2011 Permalink | Reply

            Well one of the RT’s is always calling me a troublemaker lol!

    • Indigo Jo 7:15 pm on August 14, 2011 Permalink | Reply

      So, why would they contact the school you got Sophie from? Isn’t that in Oregon? Would they re-train or certify Duke, or actually get you a new guide dog that would be trained to pull someone in a power-chair?

      How do you feel about getting a power-chair now? You were really dead set against it when you were first injured. Any idea what model of chair they will get? Will you be able to stay more or less independent when you go home, or will you need assistance?

  • Kimberley 9:57 am on August 1, 2011 Permalink | Reply
    Tags: , attitudes, capable, dangerous, , , , independence, issues, , , patients, prejudice, prescriptions, rules, ,   

    Just Another Day At The Miller Centre… 

    The first thing I was faced with this morning was a visit from the OT.  I was kind of expecting it because she was trying to get an appointment with the seating person to get the power wheelchair order ready to go.  Well, she told me that we will be meeting with her on Wednesday morning, which seems like a long time away when you are waiting so long, but it isn’t too bad.  The first thing she asked me though was if I have a Vet that I would rather take Duke to.  It turns out that she has taken it upon herself to make up even more issues that don’t even exist!

    She talked about getting Duke checked to make sure he is healthy and “don’t die in three months time” if they do go ahead and get me a power chair!  What the hell?!  Is she serious?!  Now she is going to end up calling the vet and sticking her nose into places it don’t belong creating false issues wherever she goes!  I’m so sick of this crap!  She also said I need my vision checked even though I can’t see because she thinks she can’t prescribe a power wheelchair to someone who can’t see because she didn’t do it before.  She don’t even know if they can get me a power wheelchair because of their prejudice although she knows I need one!

    She also talked about contacting tons of people to ask them about guide dogs and power wheelchairs even though 99% of them don’t deal with it at all, but at the same time she is refusing to listen to me (the person with the experience who knows how my body and Duke works)!  Then she had the nerve to have an attitude about how I was reacting and how I wasn’t just going along with all of her crap!  I was also informed that there are other people here who can’t push their own wheelchair, but she is still failing to realize that I am capable of getting around if they would follow the law and allow my guide/service dog here!  She said I wasn’t allowed to go out into the hallway because it was too dangerous.  It is dangerous because they are making it dangerous for me and everyone else here.

    I was also informed that it is going to take a very long time to get a power wheelchair (if they do, even though it’s the only way I can get around) because they don’t know what they are doing and don’t want to listen to someone who do (me)!  Then I found out that I have absolutely no therapies of any kind on the board for today, even though it’s Monday.  What is the point of laying here waiting for something that will never happen because of the attitudes and so-called rules here?  This is beyond  frustrating…

    • Chloe 11:13 am on August 1, 2011 Permalink | Reply

      If Duke is not already also trained as an attack dog, then perhaps that time has come!

      • Kim & Duke 12:37 pm on August 1, 2011 Permalink | Reply

        I know it’s complete insanity!

        • Chloe 6:22 pm on August 1, 2011 Permalink | Reply

          It’s as if they are constantly trying to come up with new crap whose only purpose appears to be an attempt to drive you bonkers! Breaking you out of there is beginning to look more and more like the rational response.

          • Kim & Duke 10:54 pm on August 1, 2011 Permalink | Reply

            I know! Just as one thing starts to look like it can possibly be straightened out then turn around and punch you in the face two or three more times by coming up with even more ways to stop things from happening! I’m completely sick of it!

            Are you, Anna and Julian going to form a rescue committee soon?

            You know what really gets to me? I know that it is dangerous to leave here before the spasms are fixed and that if I do I will end up in the hospital again to start from the beginning…

            • Anna 2:44 am on August 4, 2011 Permalink | Reply

              They aren’t fixing your spasms anyway…in a sense your right at the beginning right now anyway. If we do manage to break you out we’ll get em to write a letter outlining what they’ve tried on you.

              • Kim & Duke 1:03 pm on August 4, 2011 Permalink | Reply

                They are working on other things that could fix them. It’s a completely new area for everyone, so I know that it will take time, but I’d rather it take longer and be done right than for things to happen quickly and cause more problems…

    • Anna 7:54 pm on August 1, 2011 Permalink | Reply

      I’d be inclined to think you staying there is doing more harm than good. Your not getting out into the world as much as you were to socialise, your not pushing your own wheelchair anymore and your medications are also contributing to your loss of strength in your arms. Your not really able to move yourself around. Your not getting enough food to eat without your Mum rescuing you. If you don’t get out the really sharp stick I’m coming up there to crash some skulls together for you. It’s one thing to be there to fix your spasms, but not at the cost of your mobility and independance.

      • Kim & Duke 10:49 pm on August 1, 2011 Permalink | Reply

        I can guarantee it’s doing more harm mentally than good! There is a prison just across the street and I keep thinking at least if I was there I wouldn’t expect any freedom. I’m okay with using a power wheelchair right now because I know I can still use my manual chair if the muscle spasms are fixed and I know the power chair with save my shoulders. The medication is not working at all on my spasms now. I am back to spasming just as much as I was when I first came here nearly two months ago! I am however still dropping things. The patient care co-ordinator told me to make sure I mention this to the Doctor when she does rounds tomorrow and tell her that I don’t want to take them anymore.

        The food situation has been getting better. (I really hope I didn’t just jinx it!) Does this situation call for the really sharp poking stick with the spikes at the end? I’ve been saving that one for a situation just like this lol! Anna, you must be mad! You’re usually so gentle and relatively calm…

        You summed it up perfectly with that last sentence! I couldn’t have said it better myself!

        • Anna 12:06 am on August 2, 2011 Permalink | Reply

          I don’t like to see you being put through more hassle (for want of a better word) than you should be, it’s kind of like me deciding how much blood pressure medication I really need to take before I pass out. I take it to reduce my tremors in my hands and I only take just enough to take the edge off. Sadly I notice a big difference between taking them and not taking them now.

          I would hardly call myself gentle and calm, I got myself into trouble just yesterday opening my big mouth when I heard something that wasn’t right.

          • Kim & Duke 11:33 pm on August 2, 2011 Permalink | Reply

            It is a lot like that! The Anna I know is both those things. Could it be that someone is not giving themselves as much credit as they deserve? I think you did the right thing by opening your mouth in that situation to set things right.

            • Anna 12:07 am on August 3, 2011 Permalink | Reply

              Nah, I was only giving her more fuel to keep her “slightly skewed” perspective of the problem going. I ended up taking her off my friends list and ignoring her when I realised what I was doing.

              • Kim & Duke 1:04 pm on August 4, 2011 Permalink | Reply

                People with “slightly skewed” perspectives do keep the world interesting, but can be really annoying at times!

    • Ellen 8:04 pm on August 1, 2011 Permalink | Reply

      I think it is past time to stop being Ms. Nice-Girl. You need to get a lawyer in their ASAP and go for the throat. And if you have any previous people in the DME and related fields whom you have worked with in the past who are familiar with your situation you need to get your lawyer to contact them as well. Enough is enough.

      • Kim & Duke 11:04 pm on August 1, 2011 Permalink | Reply

        Hi Ellen, I am stuck in a situation right now where I have to try my best to not step out of place and keep as calm as humanly possible (and then some) until I get a wheelchair I can use with Duke. Once I get it, then I can fight to have him here and to get everything else sorted out. That way there will be no rational reason what-so-ever for the decision makers here to refuse to let him in here (there’s not now, but I want to make sure there are absolutely no more hic-ups along the way).

        As far as the power wheelchair goes, I’m pretty sure I can fight it so it’s not a problem. It’s just really annoying that I have to do that at all! If it comes to it I will just have to find another wheelchair that I am able to move around a little and go ahead and go out into the hallways using it. Once they see the destruction that causes they may come to their senses…

        As far as DME’s go, I haven’t worked with that many because they end up fitting wheelchairs that are too big, cause problems and things that you don’t want. I’ve avoided them like the plague. The seating person here at the rehab is the same one I dealt with years ago who tried to prescribe me a 20 inch wide wheelchair when my hips measure 14 inches and the tool they use slides back and forth easily with room to spare!

        As soon as I get the power wheelchair sorted out my lawyer will be involved to get Duke in here.

        • Ellen 9:57 pm on August 3, 2011 Permalink | Reply

          I understand about the DME “professionals” (and I use that term very loosely). I’m sorry to hear you have not found a good one to work with yet. It’s a real shame that these people who are supposed to be trained and qualified for the job they do wind up looking like a horses rear more often than not because they refuse to listen to the ‘patient’ they are dealing with.

          I also can see why you don’t want to cause too many waves over things, but so far it sounds like the place you’re currently at is doing you more harm than good. You need someone on the outside to take a direct hand in looking after your best interests right now IMO. This place is not good for you.

          • Kim & Duke 1:09 pm on August 4, 2011 Permalink | Reply

            I think they are also use to people just doing whatever they say because they don’t know any better, but I’ve had nearly seven years of experience. I’m not about to let them give me something that isn’t right for me!

            I realize it’s doing more harm than good, but I also realize that I will be here for awhile and I’m trying my best to get things in the right order so no more issues can be raised. It’s like a balancing act. One bad step could send everything collapsing into a big mess!

            • Ellen 7:59 pm on August 4, 2011 Permalink | Reply

              You are right, you’ve been dealing with this long enough you know what is best for you. And it seems you are not afraid to speak up when necessary. 🙂

              You know best what will keep that balance, so I will keep you in my thoughts and send all the positive energy your way that I can.

              • Kim & Duke 11:34 am on August 6, 2011 Permalink | Reply

                Thank you Ellen. I appreciate it! It is a bit of a fine line sometimes around here. The trick is knowing when to fight for something and when to let them take some time to come to the decision you want them to come to on their own so they think it’s their own decision.

Compose new post
Next post/Next comment
Previous post/Previous comment
Show/Hide comments
Go to top
Go to login
Show/Hide help
shift + esc