Hi all the walkers

I have been pondering posting this for a while now... I get a lot of SCI symptoms although I am back walking but to be honest, I find it difficult getting funding for pretty much anything. I have a lot of the residual "para issues" such as severe persistent UTI's, pressure sores (current one has been eight months of treatment), continence and bladder issues, impotence and infertility as well as a permanent colostomy. I also still need hand controls to drive a car. I find it is very difficult to get any sort of health funding for anything that is not related to working and even that can be a struggle.

My government insurance provider is repeatedly closing my file although I need ongoing medical care and supplies. I was cut off from the health board for ostomy supplies (because my government insurance provider was supposed to be purchasing them) and almost ran out of them before my insurance provider would help. Operations take months and in one case over a year to be approved and it is only when the possibility of working is compromised anyone seems to give a crap. I also am unable to do a lot of sports and there aren't many exercise options available at the moment with my pressure sore.

My work is also suffering because I either have an infection and the symptoms make me feel like crap or the antibiotics that cure them make me feel sick as well. As a result I don't take time off because I don't want to lose my job from too much time off but my performance is suffering while I am there so I feel I may lose it anyway due to lack of performance caused by sickness.

Recently I was told not to ride my pushbike any more as although I have a wide gel seat it is damaging my reconstructive surgery and the nerves to my legs and bladder which already aren't the best. I could go on about some of the issues and I know there are a lot of others out there who probably think my issues petty and would love to be in my shoes but with respect, this isn't about a comparison of injuries or how lucky I am walking or others are because they are not.

What I do find is that although I am walking, a lot of the other issues have remained. Sometimes it seems my insurance provider seems to think that because some of us are lucky enough to be walking again that everything else is supposed to be miraculously cured as well and there seem to be little or no help available for me (such as help purchasing or even modifying a recumbent bicycle) despite me being legally entitled to assistance with medical and/or rehabilitative exercise equipment, medical treatment, medication and other devices.I now go without some medical equipment because I just can't justify the expense.

My friends in chairs seem to have very little or no issues obtaining vehicles, recumbent bikes or whatever they need. It isn't about incomes either because some of my friends earn more on weekly compensation than I do in wages so I am often less able to afford exercise equipment than them. I also have the extra costs of medication and getting to and from work which they don't. I have even thought of hiring a lawyer or taking a case of discrimination to the human rights courts because to me it is that blatant.

Just wondering if any walkers out there are finding the same issues or am I guilty of just getting on with it and not kicking up enough fuss?

Hi mate.

There's walking, and then there's walking.

Although I've little control over my feet, if supported I can get on my hind legs and stumble a few paces before numbness starts in my bum and goes all the way down both legs and I have to sit down again. I don't know how much ground you have to cover to be classified as a walker so I suppose that "officially" I could be one.

Perhaps you have demonstrated that you can walk beyond the threshold to be classified as a "walker" and this is why you are not getting the help you need. What would happen if you were re-assessed and failed that test? Would you then qualify for any more assistance?

I can't get any assistance with the Motability scheme that helps with the cost of cars for disabled people in the UK. I was stupid enough not to apply for it when I first started having difficulty, and now I'm too old! Bummer.

I did try getting a wheelchair from our wheelchair service but they only offered clunkers (again, probably because of my age) so I ended up buying my own. I've also just had to buy my own clip-on handcycle. I have only been able to do these things because I had some cash from commuting my pension. Without that I would have been stuffed. Fortunately I get all the meds I need on free prescriptions - the one benefit if being older!

All in all, it seems that we face similar problems but you should strive to get whatever government help you can now in case, as I found, there are age limits on things that you might miss out on. You definitely need to make more fuss. Good luck.

In short - dude, I dunno. Me getting just about anything here in the world of capitalist-style health care is damned near impossible. I had a rehab chair so long that I ended up buying a second-hand chair to get me by while the insurance company decides if they're actually going to come to my house or not to do an eval. I bought my crutches (although, I did get the choice of having the world's crappiest - pass), bought my little electric foldaway scooter (which I never use anymore), have to pay for my caths, paid for extra bits of physical therapy, et cetera. I do feel a lot like I've had to shoulder a lot of my burden, but I can't decide if it's the way healthcare works here, or if it's because I was kind of set out on my own to figure everything out after releasing myself from the 'fog'.

Slowlegs,

Do you have a friend or family member who would act as your advocate?
i did this for my father and found that is is MUCH easier for a third party to bulldog their way through the red tape and stupidity to get things done.

And the reassessment idea is a good one. Refuse to walk in their presence?

I've been trying to get insurance to pay a $28,000 USD claim for a hospital expense which they categorize as home health care. 18 months later...

Take heart and think of this as advocating for all SCIs. you ARE one. And try calling the newspaper.

Give 'em hell!

I agree getting someone else in always sees to help whether it's on a trip to the doctor or an official or what...
Possibly because they instantly assume you the stereotypical "cripple therefore brain dead" which keeps them happy or sometimes the reinforcement of a third party helps you explain and them listen.

I might not be making much sense but I know where you're coming from. I'm too mobile for any assistance it seems because I am go for miles with the aid of crutches and sometimes a full mile without any assistance at all (that is when the current flare up of general cac isn't kicking my rump). The fact that we keep having to prop up the medication to keep me upright means nothing to them.

I know it's probably cheating but do you have assess to mobility aids to play the part for them or failing that... hit them over the groin with?

Thanks all, looking back it is probably a lot because I haven't really been proactive in investigating what is available to me. For example I wanted to go back to work straight away so went back before my insurer suggested I should (they were very surprised) and never did retraining. If I waited they would possibly have retrained me. I didn't realise there was an opportunity to go to university and get a degree if I had pushed for it. That would quite possibly have helped me now as I could have possibly worked closer to home or even at home if in a more in demand job that paid better.

With other things I never really investigated the possibility of help, even counselling didn't come until a few years ago and I had to undergo a full "mental medical" to prove I had PTSD and be eligible for 12 counselling sessions.

A lot of that was probably also because I had in those days, poor advocates in the form of my GP's and I lived in the "able bodied world". This was partly because that was what I was trying to return to and also I suppose I couldn't accept the reality - that I do have a disability. As I tried "accessable" sports I associated with more disabled people I got to accept that I am disabled and recently as my condition has worsened I have begun to need more help - which is now not forthcoming because for the last 24 years I have been quite self sufficient as far as my insurer is concerned. We now have a new right wing government which is severely clamping down on help so some of these things - although available just a year ago - are now or soon will be unavailable anyway.

Thanks again for some great suggestions. I will have to find an advocate of some sort - even if that does come in the form of a lawyer.

You should probably make more of a fuss. If you need the help with medical supplies, the government's idea that you don't is incorrect, and the only one that can let them know of their mistake is you.

As for myself, I am a walker but with my diagnosis as a cervical injury, the local government is more than happy to buy whatever I need. I continue getting brochures for different powerchairs every year even, haha.

-Sam