35 replies to this topic

[Laughing_Lizard]

Hi everyone I'm new here, been browsing for a while now, there's some great info on here, I've learnt a lot!!!!!

I've got demylenation lesions in my spinal cord, still not a clear diagnoses as to what from, drs are still looking MS direction but not diagnosed yet, then i had a fall in October last year that resulted in Complex Regional Pain Syndrome in my ankle & put me completely into a wheelchair.

I haven't gone though hospital/rehab type stuff like would happen with a spinal cord injury, and I'm kinda falling through the cracks a bit & trying to figure a lot of things out myself. Have got onto my local MP now though & she's helping speed things up & getting me access to resourses so things are finally happening :-)

Anyway for ages I had an el cheapo take granny out for the day type chair and for the last couple of months I've have a "proper" sports wheelchair borrowed from a friend while I'm now FINALLY being fitted for my proper permenent one.

The friend's chair I'm using is apparently too small for me & the demo ones I've tried are too big, but I also have the problem that being used to one that's too small, things feel too big even if they're not. My OT suggested a particular one but I felt I wanted to be able to grab more wheel so she's suggested bigger wheels. I thought that sounded fine, but then thinking about it I wondered if that might be a problem on things like stairs.

I'm a VERY active/adventuous user!!!!! I do escalators, down stairs etc all the time. Can anyone tell me their experience with wheel size & that sort of use?

[Laughing_Lizard]

Hmmm this forum has a lot more lurkers than posters doesn't it!

Anyway if anyone can give me feedback on what size wheels you have on your chair & how you find them, that would be great :-)

[Texaswheelz]

I think the most common size for a manual chair is the 25 inch wheel, 559 size tires. I know a few people that use 24's and some with 26's, but the majority push 25's. I haven't even tried smaller or larger, so I can't say what the difference is. I know in basketball the taller people use the larger ones because it of course allows them to sit higher. Also the smaller guys that are faster and more manuverable normally use the 24's.

As far as the type of wheels, if you want a good light wheel(but pricey) then the Spinergywheels are the way to go. I pushed around crappy ass plastic things for years before getting spinergy's and it make a difference, the spokes are made from fiber, which is very light. Another wheel to look into that I am thinking of getting a pair of to compare to the Spinergy I have is Round Betty wheels. They have aluminum spokes and are pretty light themselves.

[Laughing_Lizard]

Thanks so much Texaswheelz
My OT was only talking about 24 & 26 inch, I didn't even realise there were 25 inch so that's really great to know & if that's most common, I'm guessing it would be fine for most uses & 1 inch bigger probably isn't much more either if needed.

I'm getting my chair through the Government's PADP system, so they're paying, so I have absolutely no idea what they're prepared to do with wheels, but looked at both those links & arming myself with info. I can't believe how much there is to consider with a wheelchair. I always just thought a wheelchair's a wheelchair but there's so much more to it! Is there anything else I should be aware of that the OT might miss/not tell me about? That's probably way too open a question to even try to answer isn't it lol

I have another trial/fitting thing with the "Quickie GT" next Friday (which is the one we were looking at bigger wheels for) and also with Mogo chairs next Thursday (that's the brand I'm using at the moment). Am feeling really excited right now, feels like things are actually happening (with the chair & also with a new place to live)

[Texaswheelz]

Yeah, hard to answer without knowing what your OT has said or gone over already. There is a lot to consider when getting a chair, the most important being fit and the next being what you are going to be using it for every day. Some go for comfort to, however if it fits you correctly it's about as comfortable as it going to get, add more comfort and you take away usability and in my opinion comfort is for when I get home and jump on the sofa or recliner.

When ordering your chair then you get the tire size you choose and customize the size from there. However once you have the chair, changing the rear wheel size can make a difference in other things, such as the dump of the chair (how much your butt sits lower then your knee's).

I don't know anything about what type of chairs the Government in Australia will buy and I've never heard of the MOGO brand so I assume it's a chair made in Australia. The Quickie GT though I have heard of, it's a nice light Aluminum rigid chair, which means that Titanium is something that they probably won't pay for. I would also consider a Tilite Aero Z and a Top End Crossfire as well as the newest aluminum Quickie, the Quickie 7.

Again I don't know what companies you have available to you down under nor what type of chair the Government program will pay for, however I would think if they will pay for a Quickie GT then they'd pay for a Quickie Q7. The difference between the two before you start customizing is 69 US dollars.

You are ahead of the game in that you are actually trying to do some research on your own, most people just get what ever the OT tells em to get and then end up wishing they'd looked into it more.

Other things to look at, your seat cushion, back cushion, front casters.

As far as your first worries about stairs. A larger wheel size would actually make it easier to roll over obstacles such as steps, smaller ones would be harder to rollover them. But also with larger tires in the back you are going to be setting up higher, meaning you can roll under less things like tables. With 25(559's) my knee's are just at the right height to roll under most tables when going out to eat, a little higher and they wouldn't fit.

[cathie]

Texaswheelz - Mogo is an Australian brand of chair, just like there are some brands you guys in the US have that we can't access here in Oz. They make mostly aluminium rigid chairs and some folders.

Laughing_Lizard - How is it that you can get PADP funding with no diagnosis? I am having the issue of I can't get funding for any equipment at all as I have no diagnosis. It is driving me, my physio and OT nuts. I'm in Victoria so I'm under the Aids and Equipment Program. I can't even get funding for a shower chair, so my OT had to loan me one from the hospital's rehab centre. I have had to self-fund for all of my equipment needed over the last 3 years, which is not easy when most equipment requires a prescription from an OT/Physio and can only be accessed through the state funding programs or so I've been told. You may also find that you need to pay part of the amount for a rigid chair as I was told by my OT when we thought we might be able to secure funding.

I was able to do rehab, but found that with no diagnosis the staff tended to treat you like you were faking and in my case kept telling me to "do things normally", which was much different to my rehab experience 12 years ago for a c7 incomplete injury.

[greybeard]

There's a lot of confusion about wheel/tyre sizes. The 25" (559) wheel is often referred to as taking a 26" tyre and therefore known as a 26" wheel. Confusing? You betcha.

Best to forget the size in inches and go by the ETRTO size chart (ie the 559 number etc) as that never changes, and have a read of the info on THIS web site, where all is revealed.

Hope that helps.

[wheelywendy]

all depends on what you find suits you really, i have 24" on one chair and 25" on the other and to be quite honest i dont really notice much difference, but then both chairs are diffrent so a lot will also depend on what chair your using, i have spinergy wheels on both and schwalbe marathon plus tyres. wendy

[Laughing_Lizard]

Oh geez! there are so many things to think about! hadn't even crossed my mind re the table thing. I had that problem on the first chair I had, being that big useless hospital type with arms that got in the way of everything. Will have a closer at that now! Thanks Texaswheelz!!!!

I honestly have no idea what the government stuff here will pay for either, from what i understand, if you can justify it they'll pay for it, but the more expensive the longer it takes for them to check it all out & approve it & if it's too expensive they question if there's cheaper options.

So far what I've decided/haven't decided I want in the chair is
- a tension adjustable back .... yay i have one thing actually decided!
- fairly high back because i also have CFS (Chronic Fatigue Syndrome) & find it too exhausting if i can't rest against the back in the chair, but my OT has pointed out the disadvantages & said the way I'm using the chair for mobility I probably want lower so still torn on the exact height I want.
- no handles to prevent overhelpful people deciding to push me around.... except i want the handles or something to hang my shopping, bag, laptop etc on! arrrgghhhhhh!
- less rake/dump of chair (the one i'm using now has 5 inches of it, I'm looking at reducing to about 2 inches? really not sure on that honestly. I think I want the least I can get while still being held stably in the chair
- set up that supports & protects my injured leg/ankle, (was working out if i needed that in the frame shape but OT is saying we can do that through cushion shaping). Am wondering now if i should also be looking at "frog legs" from what I'm reading about them, any jolting of my leg aggravates my ankle injury.
- frame structure that means i can easily pull myself up on the chair from the ground grabbing the front without it tipping & no fold away foot plates or anything else to have to fiddle with
- as light and small as possible so i can get it into my car as easily as possible lifting across my lap
- durable enough to handle being bounced down stairs etc (did a new one last night too, caught a train & instead of waiting for the ramps I did a full speed all wheels off the ground jump across the 20cm gap onto the platform
- black or purple so it will match my clothes - well why not
- no anti-tip bars!!!!!!!
- just feeling comfortable & feeling like it moves like part of my body rather than feeling like I'm sitting in a chair

front caster is another i have no idea on really. i want lots of manuverability, so i'm thinking probably fairly small but it's not something the OT's really discussing.

dealing with the sales rep the OT's chosen is frustrating! i know there's some really good ones & really good companies out there! the one she's chosen probably doesn't even have the quickie Q7 or much range of anything from what i can see. am definately going to enquire at least about that one though! I think the mogo rep is likely to be really good, but i think the quickie chair will have more adjustment options than the mogo one, which probably is good for a first chair & as i figure out what's more important to me with things like back height

as far as stair use now, escalators i do all the time, no issue, just a normal part of life. up stairs, one at a doorway i do, otherwise i climb out, pull myself up then pull the chair up, but hope to learn to do them eventually. down stairs i can do about 3-4 with no hand rails (although i had a pretty nasty spill a few weeks back & have lost a bit of confidence from that) with hand rail 5-6 of any size. i go down backwards & mostly just let the chair bump down them. full flights of stairs, depends on the size of the stairs. if the stairs look too narrow to really sit the wheel on, then if there's another way down i use it, if not, if the hand rail's solid & the full duration i'll go down them, ideally with someone behind to slow me if needed. that's the point i'm really at right now though is learning full flights confidently & that's where i'm thinking bigger wheels would mean less ability to do it.

i basicly have the attitude that there's no reason my life has to change because of a chair. Ok there's a transition process & emotionally it takes some getting used to & some non-accessable events i can't be bothered with, but i'm determined to keep doing all the normal things i did before it, so if i want to go somewhere i do, regardless of whether the place is considered accessible or not & that means the chair's in for a very rough ride

[Laughing_Lizard]

oh wow there's lots of posts here since i started writing the above! & btw sorry i rant so much everyone, i'm still kinda figuring it all out in my own head & trying to work out what's relevent & what's not

cathie just read your about me page & i can relate SO much!!!! i went to the hospital after the injury that put me in the chair, they diagnosed a sprain & basicly told me i was a hypercondriac. I've had CFS for YEARS now & have gone though all that stuff with that too, Neurologists are the worst if it's diagnoses unknown aren't they!!!!! anyway over hte years i have developed a great network of support drs, my GP's fantastic! so when i saw her after the hospital (i conned them into thinking i was standing when i was taking all my weight on my arms on the bed so i could get out of there, wheelchair to the taxi, then crawled inside when i got home & then saw my GP the next day) she took one look & said "if you're telling me you can't walk i know there's something seriously wrong!" & set things in motion. in saying that, this was early October last year & i'm still on wheelchair fittings!

honestly i'm not sure what's allowed things to happen, or honestly even if it is going to go through PADP without incident. OT seems to think it will & a diagnoses isn't needed. the fact that the demylenation lesions have finally shown up on the MRI is no doubt helpful though & the physio formally diagnosing the CRPS (complex regional pain syndrome) - slightly more painful & serious than a sprained ankle!!!!!!!!!!!!!! it maybe that the CFS helps too? i honestly have no idea. I'm in NSW so that might make a difference too i really don't know. on this stuff i really don't seem to have hit problems with no diagnoses = can't treat though. but boy in the early days with the CFS i did! & the whole we can't find anything physical it must be in your head

Have you tried writing to your local member of parliment cathie? that is one thing i think could be a factor for me right now. it was a couple of weeks after i wrote to her that all of a sudden the OT started returning my calls & organising the fittings & i'm sure mogo is more expensive than quickie but she doesn't seem bothered. i really don't know though & i may yet find i am in the same situation as you with funding rejected




so what is it about the spinergy wheels that makes them so good? definately seems like they are but why? what's different?

looking at the tyre size link now too, this is so complex! (especially at 3am lol) i'm feeling so overwhelmed by it all! wheelywendy that's really great to hear there's not a noticable difference in size though, thanks!!!!!!!!

[qbounce]

I recently found out that there are push handles that fold up or down (your wish list #3). So, flip them up when you have a shopping bag, and flip them down when not in use.

Good luck with your chair needs.

[cathie]

I'm at the stage where now the specialists have said they don't know and they probably never will that they will not see me again unless my gp thinks they need to or there is significant change in my issues. Because of that I can't get anyone to justify anything equipment wise and I have been using a second hand chair that fell apart and was welded back together (not confident that it won't do the same thing again), my grandmother's shower chair (until she died last month) and forearms crutches (which are extremely more difficult to use as the osteoarthritis at C7 worsens and I have been losing hand function again. I put most of my weight through my arms too).

I was trying to get something done through my local MP when I was living in Melbourne, but then I had to move to country/rural areas (Mildura and now Bendigo), which stopped that process and now that I am somewhere permanent, I will restart the process. It was not so much that the funding was rejected, it was more the OT telling me that the paperwork couldn't be put in without a diagnosis. While I was in Mildura I was actually dealing with the PADP as well as the A&EP in Victoria as it's right on the border of NSW and I moved over the border for a while when we moved house. Same OT, different paperwork, same outcome. I seem to have a really great GP now who is really supportive although a little inexperienced (doesn't know what baclofen or some of my other meds are) unlike my old GP who thought it would all improve overnight with some physio.

Sorry if I'm a bit all over the place in this post, but it's 3.30am now and I haven't slept in 3 days.

[Laughing_Lizard]

thanks qbounce one of the chairs i was looking at had the fold up handles, i love the idea of those!!!!! rep didn't seem to think the quickie had that option though i will check again though, check on the mogo too & the others suggested here, i do like that idea. at times i seem to attract the helpers (mostly when i'm actually completely fine & just watching that i don't kill them by zipping round too fast etc lol)

greybeard that is confusing! but also clearer i think, thanks my chair actually sits outside when i'm at home right now & i pull myself around on a piece of wood with casters on the bottom cause my unit's so tiny, so will look at the tyres & wheels on the chair i have now in the morning & hopefully make sense of it all.

& wheelywendy aarrrrrhhhhh so tyres is ANOTHER thing i need to think about too? seriously though thanks i really appresiate all this info!!!!!!

cathy that's shocking! surely there has to be better than that somehow!
the hospital tried to put me on crutches, but my balance was already gone & i could only walk if i locked my knee in before trying to step due to the lesions & i'd had so many falls & a fall caused my ankle, so i refused, scared of what would happen if i fell with crutches attached to me.

neurologist wanted to do all that sort of thing, happy to put me in a nursing home & drug me up on pain killers, permenently in bed just to be able to get me walking for 5 minutes or so a day without needing the wheelchair! he refered me to a rehab dr so i was thinking oh here we go, your friend will no doubt feel the same way as you, but luckily he didn't! quite the opposite, his attitude was lets look at what you can do, what you have trouble with & what we can do to improve your quality of life & then when he started hearing what i was doing in the wheelchair he seemed to decide it made sense to not even attempt to change it, which i totally agree with! i mean i want to try to walk again definately, but not at all costs! just seems silly to be in so much pain & having so many falls & being so slow & never going out because of no mobility when i can have a "normal" life if i do it sitting.

i can't believe the way they made you "walk" on crutches while dragging your legs! well sadly i actually can believe it, but it's crazy! If those people had instead of that recomended that you get funding for a wheelchair, would you have got the funding? & do you have a good chair now & paid for yourself or what? & couldn't they use your original injury as the diagnoses if they had to put something? surely there must be ways around that when there's clearly something wrong!

i went out to the spastic centre a while back. my fingers are also effected during flare ups & they have a technical section that went through computer devices with me. they were telling me that teh diagnoses doesn't matter though, they said that there's people out there that have no diagnoses but need a wheelchair & that the PADP doesn't require a diagnoses to pay for it. honestly though i'm newer to this than you are, so i really dont' know what i'm talking about, really just in guesswork stage myself but surely there must be a way somehow!

& why no sleep for 3 days? is that part of your condition too? i think i'm going to try to get some sleep now, 4am! but will be back tomorrow. thanks so much for all the info everyone & thanks for the chat cathie & tomorrow i'm going to try to figure out how to use more of the features on this site

oh geez! i thought my last post was shorter, sorry! I'm definately going to stop ranting & going to bed now lol & hopefully i'll be at least a little more concise tomorrow

[cathie]

I have half a good chair now. Self-funded was able to get the frame, but need wheels, casters and the bits to attach them. The physio I was seeing last year was banging his head against a brick wall when it came to getting my GP to fill in the forms to get funding, he even gave my GP diagnoses, like chronic back pain and the osteoarthritis I do have, that he could put on the form without stretching the truth. They won't use my original C7 injury as a diagnosis as it was proven more than 10 years ago that I didn't need a wheelchair and it is documented. These days I don't go out unless I have to as it takes too much energy that I need to drag myself around my house and it causes more pain and I have even more falls than by sitting around at home. I am back to dragging myself around until I can get parts for this chair or get funding for a new one. My old one is much too big since I lost the 50kg I needed to loose to make my GP happy and to be healthier and also it is really wobbly and unsafe to use.

No sleep is due to the pain I am in on a daily basis from dragging myself around. I am maxed out on Tramal and Panadeine Forte. I also have to take Maxolon to stop me puking the pain pills up. I sleep when I can. When I had my old chair before it fell apart I had a lot less pain. I was also able to get out and do normal things like catching up with friends and working, but now I'm stuck at home again. It might just be that the funding requirements are different in Vic to NSW. Also if they had recommended the equipment to start with it would not be a problem now. But even the equipment that was recommended like the AFO's the orthotist and podiatrist wanted were shot down by the physio when I was doing outpatient rehab.

[Laughing_Lizard]

I checked the wheels on my current chair, the tyres are Primo? (think i spelt that right) & are 25 inch on a 24 inch wheel if I'm reading the label right, so the size stuff is making much more sense to me now, thanks greybeard

cathy it sounds like your problem is coming from the people who are supposed to be helping you not advocating for you enough how frustrating!!!!!!! The opposite might be why apart from delays i haven't had those problems too, my GP's a huge socialist (plus greenpeace & gay rights activist to the point of being jailed! very cool ) she pushes really hard for this sort of thing, then i have an "environmental specialist" who's very media & beurocrate savy plus a psychologist who jumps in if anyone tries to say i can walk etc & says there's no psycological issues effecting physical & i need the chair, so i guess that combo's probably working well for me?

My heart's breaking over your situation though, that's just so not right! mobility's such a basic thing!!!!!! & if you keep falling & putting pressure on the wrong parts of your body, it's only a matter of time before you're even more injured & needing more equipment! just crazy! If it helps aldi had wheelchairs for $200 a while back. that was what i first had, not from aldi, didn't get in fast enough, but a wheelchair place price matched (then did an ex demo of the chair for me for $120!!!!!!) not a good chair, but is stable & potentually better than nothing (maybe, may not be for you either with hands & things)

I find it insaine the way doctors are prepared to prescribe so many drugs for pain relief yet not fill in a form that would mean you get a piece of equipment that would leave you pain & medication free. it's just nuts!!!!!! they don't teach common sense in medical school do they!

do you get any help with shopping & cleaning & that sort of thing to make life a little easier?

[cathie]

Yeah it was originally caused by people not advocating for me when they should have. I'm seeing a new physio and OT on Tuesday (husband and wife team) and hopefully this will be a positive move. The practice nurse at my health clinic tells me I have a really great GP and that this physio is also really great. GP is supposedly really nice as a person and goes the extra mile to get what his patients need. I have looked into other chairs, but I can't use a standard folder because I can't transfer it into my car. If I can't get it in the car I can't go out without having someone to go with me and I like my independence.

2 years ago I was getting help with housework through my local council, but not with the shopping as I was living with my dad. When I moved we were getting some services because of my grandmother, but we had lots of people living in the house. I worked out a way to do the grocery shopping without having to go with someone else. Most supermarkets are more than happy to give you a hand or have someone follow you with a trolley and some of them had wheelchair trolleys which were great if I was doing a shop that wasn't too big, but wouldn't fit in a basket. Now I am living with my brother and his housemates and they help with the chores and shopping and I do what I can.

[Laughing_Lizard]

that sounds like you're moving the right direction now then cathie! that's good! must be so frustrating to have taken so long to get this far though!!!! so will they put in a new application for a chair?

the aldi one does have pop off wheels, but at 18kgs there was no way i could lift it across my body into my car! when i had that one i'd transfer into the back seat, fold it up & roll it into the back seat, then (with great difficulty) pull myself through between the seats into the front. it did work, although i was constantly covered in bruises & so sore & ripped gashes into so many pairs of pants (particularly getting back across into the back seat over the wheelchair) a "proper" wheelchair is SO much easier!!!!!

i was thinking more with the shopping with not having a chair & dragging yourself around, how do you manage then? I used to lean on the trolley but still found it incredibly hard!!!!! especially getting the shopping inside at the other end. In the chair i have no issue, i chuck a couple of ecobags across the handles & off i go once i'm up to about 10-15kgs, if still going, i next put some weight on my lap so i don't tip, then load up more lol. I read about the wheelchair trolleys on here a while back, but i've never seen them

[cathie]

Hopefully they will see the need for a chair and put an application in this time. It has been frustrating to get this far and I'm not sure if I'm there yet.

At 18kg there is no way I could transfer that into my car, my old folder was 15kg and I really struggled with that and it went in the boot of my hatch (tailgate is missing some paint) and had many days where I couldn't handle it at all and had my 12yo niece load it for me. With shopping I tried leaning on a trolley, but find that if empty it tips. I try to go shopping during business hours in one of the lager shopping centres in my area and borrow one of their chairs if I can. Otherwise I drive housemates do shopping as I'm the only one with a licence/car. I can't hold items any more and I can't put bags on my crutches as it puts me off balance. My brother is great if I need to do personal shopping. I am unable to do a full grocery shop even if I'm just tagging along because I end up falling before I can walk down every aisle of the supermarket. In a chair it is much easier as I can go shopping on my own as my lap is a great place to put things.

[Laughing_Lizard]

I can SO relate to everything you're saying cathie!!!! Have tried so many of the same things you've tried! Have you found any support groups or anyone you can share with & get new ideas? that's the bit i find really hard having not gone through a rehab type facility, all trial & error alone

i'd forgotten the tipping trolley thing till you mentioned it lol they're so picky on how you distribute your weight aren't they! Can't belive you try to balance shopping bags on crutches!!!!!! wow that wold take skill! I used to use a backpack to get my shopping inside, but even then only about 2kgs max at a time. Must be hard being in a country town too is it? I don't know what shops are like around your way but i know even in the city there's a huge variation so i'm picky where i go. Can you shop online & get delivery where you are? That option's saved me a few times here!

I so hope you do get a chair this time!!!!!! It makes such a difference! I was the same with not being able to walk all the aisles before becoming too exhausted & i'd lean on the trolley, but turning at the end of the aisles was a killer! I'd do lists & calculate the path i needed desperately searching for the shortest route. Now..... TOTALLY different!!!!!! I'm loving shopping!!!!! making up for lost time lol there's been a few times that i've been & 8-9 hours later dam!!!! all the shops are shutting, i have to stop my shopping lol.... but cinema's still open, might see a movie before i go home. For me those days of 1/2 an hour of shopping, then dragging myself home & into bed to exhausted & in too much pain to move are just memories. I hope you can get the same result! (and sooner rather than later)

[cathie]

Don't know of any support groups in my area or any other area I've lived in the last few years. Haven't met many people as I don't get out. So not a whole heap of support, but you get that.

I tried balancing shopping bags on the crutches as I had no where else to put them (btw it doesn't work, just puts me off balance and smashes bags into my legs when I move.) I tried to be creative. I can't use a backpack because I can't access it and because of my age they assume I'm trying to steal stuff (I look younger than my age and still get asked for ID for everything. My brother's housemates thought he was older than I am). I have to put weight on the trolley unless I can get someone else to go with me as I've got to put my crutches somewhere and then need to use something to steady myself. I found it much easier shopping in a smaller country town (mildura) as people are more likely to assist you than in the city (melbourne), however I haven't been on my own in Bendigo for more than one thing and that only works if I can hold it as well as the crutches. It's very frustrating not being able to go in to pick up milk or simple things like that. No online shopping to my address even though I'm less than 5 mins from the big supermarkets. My brother's suburb is foreign to them even though we live in the middle of town. I am greatful to have my brother to help me out.

I have to lean on the trolley otherwise I fall before getting into the supermarket. I got lists of where stuff was in each store from the store so I plan my shops by where stuff is and do the closest stuff and get my brother or his house mates to get stuff further away or out of my reach. I was able to do so much more when I had my old chair. I could do things on my own, go out without falling, getting fatigued or having as severe pain. I can't go to visit people because I can't get around enough and they freak out when I fall or when I get spasms (frequent cause of falls for me). I was looking for work which I can't do now, I could socialise, shop and almost everything else people do. Hopefully the session with my new physio on tuesday will be productive and have some positives.

Just so over it all at the moment.
Cathie

[greybeard]

cathie, on Jun 13 2010, 02:30 PM, said:

Hopefully the session with my new physio on tuesday will be productive and have some positives.

Good luck on Tuesday, Cathie. Go and see this "wonderful new doc" as soon as you can, and do what you have to do to get him and the new PT team to organise a chair so you can start living as normal a life as possible. Go get'm girl.

[cathie]

Thanks Greybeard.

Hopefully things will happen this time

[Laughing_Lizard]

I agree with Greybeard cathie! i REALLY hope it does go through this time! Not good how you're currently trying to cope no-one should have to endure that!

If it helps, the way i got my heavy weight wheelchair into the car was to transfer myself into the back seat & then grab the leg pieces & lift the chair into a wheelie position (very easy) & then put my hand on the wheel (other still on leg pieces guiding them) & use the wheels to roll the chair up onto the back seat floor. No way i could have lifted it, but rolling it from that angle worked very easily. The transfer into the front seat was the only bit that was difficult.

Fingers crossed though! Hopefully tomorrow will see things happening! Make sure you post how it goes won't you!!!!

[cathie]

Yeah I'll definitely post to let you guys know what happens.
Sorry for hijacking the thread.

[cathie]

So I had physio this morning and had some mixed results.
The actual treatment was not good as I left in more pain than I had when I arrived. I had ultrasound done on my spine and then he tried to loosen the muscles along my spine. That caused shooting pain down my back and arms.
However the physio after talking to me about how this was affecting me asked if I had a wheelchair and wanted to know why not. So now he is going to write to my GP to suggest that it might be a good idea, but he wants to see me a few more times before he sends the letter. So it is back to wait and see.

[Laughing_Lizard]

ugg don't you hate that! so how long between appointments? & are the appointments covered under a medical plan thingy or are you paying for each one? fingers crossed it will happen quickly and as cheaply as possible!

I saw a new physio today too, at Ryde rehab hospital, so good place but i'm really not sure about this one either. my ankle's already been bad the last week or so, couldn't even get shoes on for the appointment today. she got me doing mirror theropy but tonight i'm a mess! have ly leg fuly supported here but the pain's still excurciating, dont think i'll be getting much sleep tonight if any!

she's saying i need to just deal with the pain & that's a normal part of the treatment but last time i pushed this hard my leg also froze up (as in literally the brain cut off circulation & it felt as cold as a drink you'd get out of a bucket of ice, with no heat at all under the surface either) & this condition often results in amputation due to exactly that, so as much as it would be good to walk again, i really don't think what she's pushing me to do is going to help that, quite the oppisite & i've worked SO SO SO hard to get this thing moving steadily into remission, but if i object to the treatment, then it will be oh it's all psycological & she wants to not walk again & enjoys the wheelchair. It's jsut SO frustrating trying to talk ot these people sometimes!

another thing that conserns me is i mentioned my shoulder injury too & if she had any recomendations for that, told her it's been sore since the last time i fell out of the chair & caught myself on my arm & she's getting all stressy & telling me i shouldn't do wheelies & don't go anywhere near the spinal unit doing them, cause they spend the whole time over there trying to get the guys to put the anit-tip bars back on the chair i mean what the???? isn't the aim to live as normal a life as possible? & there's no way you can get anywhere near max mobility with anti-tip bars on! so not sure i share her treatment philosophy

[cathie]

I've been in bed ever since I got home because of the pain and I was quite confused when I was told by the physio that arthritis isn't a progressive disease. I have to go back next week on Wednesday. It's all being paid for under the Enhanced Primary Care Program although I was sceptical to begin with as I've had more physio than you can poke a stick at with very little improvement over the last three years, so I said I only wanted 3 sessions out of a max of 5 for the year. He wants me to go back next week and keep the last appointment for if/when I need it.

I sometimes have to wonder if these people get their qualifications out of a cornflakes box! When I was in Mildura and still had my old chair I had to take the anti tips off almost immediately because of the terrain. I couldn't even cross the street because of the incline of the kerb cutouts and the opposing incline of the road. And that's where there were footpaths! I was dumped out more than once because of that. I had to pop wheelies all the time to be able to be independent and be able to get anywhere. I had the it's all in your head thing too when I was doing rehab and most of the other people were joint replacement or heart/lung patients. Basically no one under 50 went through outpatient rehab at Sunshine hospital.

[Laughing_Lizard]

I thought it was 6 under the enhanced primary care plan? i could be wrong. that's what i used last year. 5-6 is not many for this sort of thing! lets hope you get the wheelchair well within the 5! this hospital thing i have is different, so seems to be unlimited under medicare, which sounds good, except if it's not at all helpful i can't use cost as an excuse to stop.

i went to the pool & did my rehab on my other leg there, then spa & sauna to try to help settle it & it was ok but now it's really gone am lying here leg supported not game to move. currently freezing cause i had a shower but i have to move it to change from towel around me to clothed. dont think it will be getting bedclothes or socks or anything tonight! going to have to get up to go to the toilet soon, will try to do everything at once, but seriously putting it off as long as i possibly can! same with dinner (mind you the pain's caused nausea so not sure i'll keep anything down anyway)

re arthritis & progressive, i'm not sure. My Gran had it & it didn't seem to progress for years, that was rhumtoid though not osteo & hers was totally controlled, so maybe the physio's right if it's controlled & the joint is being looked after BUT with the way you're pulling yourself around i can't see it's not going to degenerate! that's another reason i'd rather the wheelchair, in trying the walking thing today i could feel my joints under so much pressure. physio said my entire walking was "compensatory" & there was no normal movement there at all, so i think she wants to teach me to walk more normally again, which is good cause there's no way what i'm doing isn't causing massive damage to my joints, but as a isaid ot her, i've been stuck on 16-18 repetitions of knee bending in under arm deep water (while holdign the side & taking most of my weight on my arms) for nearly a year now & it doesn't improve, so how exactly does she think i'm suddenly going ot be able ot walk again? i can't hold my body weight unless my knee's locked in, if it's not it just gives way, has been that way since April last year! & she's aying oh we'll jsut get you into waist deep water & work from there, well i tried nipple deep water & my leg jsut collapsed! it's not that simple! why don't these people understand this! you can't jsut will a body to do soemthing it can't do!!!! that's why the compenstaory walking, cause it was the ONLY way i could function! it hurt like hell! no way i was doing it if i didn't need to! 6 months like that nearly killed me and gave me this horrid CRPS & then on the CRPS she's saying oh you've got good movement for that condition, obviously a mild case HELLO you didn't see me when it first happened!!!! i've worked incredibly hard ot get it where it is now! i've gone through agony for months & months gradually working it but you think you can jsut jump in & magically cure it

it's jsut so frustrating!!!!!!!! & the smilie's jumping out at me
why to these people not get it? & what do otehr people do when dealing with these "professionals"? SO frustrating!!!

& yeh the anti-tip bars, read a thread on here a while ago by a guy who had been told he wasn't allowed to take his off & everyone here was basicly agreeing you can't do anything with them on, jsut crazy! & this is their standard rehab for all paraplegics i mean how stupid! why would you do that?

my OT was trying to find an advanced wheelchair training course for me too, this was one of the places she was looking into to see if they did them, somehow i don't think that's going to work is it!

[cathie]

This year it's definitely 5, so I don't have to pay for those 5. The program you are under is different. I went through 6 months at community based rehab. I went 3 times a week. Physio, OT, hydrotherapy, Clinical Psych, podiatrist, Social worker and continence nurse. I went until they powers that be at the rehab facility thought there was no more progress to be made. In my case it was because I had no improvement over the 6 months rather I had gone backwards.

I am currently under two doonas fully clothed with the heater on. We have hit 0 degrees again tonight even though it was only supposed to get down to 3. I am battling spasms in my back, legs and stomach which are a little unusual apart from the legs. Osteoarthritis is a little different to rhuematoid and some people have different patterns of progression. For me I have had significant progression in the last 6 months especially in my neck, which is affecting my hand function. I have developed osteophytes (extra bone growth) which press on the nerve roots from the spine and this will only get worse with time.

I love how some physio's think that you will suddenly be able to walk normally again just because they tell you to. I spent 12 months with my last physio trying to "retrain" the muscles in my ankles so that my feet wouldn't drop. He realised it wasn't working even though I was trying and doing everything I was supposed to. My legs are doing what they want to not what I want to. I would love to be able to walk normally, run and everything else, but my body is not cooperating. It is something that won't just magically change overnight. I fully understand your frustration with them not understanding.

[Laughing_Lizard]

I can't belive you endured it 3 times a week for 6 months with no progress & no doubt being told all the time it was because you didn't want to improve & other similar crap. I just watched a movie trying to take my mind off the pain (in between bouts of screaming & crying from it) am seriously thinking i don't want to keep the appointment next Monday. Am so tired now! have the lights off to try to let my eyes at least rest, no way i'll be sleeping tonight

I've got an air conditioner that's running here, so that helps a lot with the cold, leg's currently exposed though, cramping up with the cold but excruciating to try to put even a sock onto last time it was like this was summer so didn't need to cover it for warmth.

at least mine's only my ankle though, youv'e got your whole body almost doing it the unusual spasms would be due to the treatment you had today wouldn't they? wonder how long they'll take to settle down

I'm still hopeful my knees can be retrained & be able to hold my body weight again, but i think it's stupid to think it can be done overnight! first priority has to be getting my ankle sorted, till that's done i can't walk at all i do belive even without a physio involved i'll get it into a good level of remission within the next year or 2, then after that i start walking in neck deep water, getting the motion happening & from there i dunno, that's where i'll need a physio or someone to figure out why my knees just won't hold my body weight (potentually need them earlier too to teach me how to walk correctly, i've ALWAYS had leg pain with activity, as a kid it was called "growing pains" then it was "fallen arches" then it became well you have the right shoes, orthotics & everything looks right so we don't know why you're still getting leg pain. I'd forgotten all about that stuff till the good physio i was seeing was talking about where he wanted to get me to & i realised i'd never in my life been at that level. i jsut wish i could get an explination for all this stuff!