1. ABOUT

 

800px-Independence_Town_Sign

INTRODUCTION 

What this site is for

If you are a C6 male quad who likes the idea of independence but can’t get it, or you are being told you can’t, this site will give you instructions.

Its not meant to be some dodgy new age motivational self help book. Its a practical ‘how to’ guide that shows how I, as a C6 quad, do the every day tasks that all humans have to do.

Included in the list of tasks are things like, travel, work, going out and sex, because these are the basic things we need to do just because we are human.

What this site is NOT for

I am a C6 male quad and the site is solely based on my individual experience. I have not and will not try to generalise it in anyway, or even ground truth its accuracy as far as other individuals are concerned. If you find it is not relevant to you, or wrong, or offensive, simply move on to some other website.

It is deliberately expressed from the male perspective. This is not due to an oversight or an assumption. It is because the male experience of being a C6 is all I know, and I suspect quite a lot of the experience is different for women. In addition, I don’t presume to speak for anyone other than myself, in particular I don’t presume to speak for women. However, if some or all of it is of relevance to female quads that will be great.

How this site works

The page buttons above, which are repeated in the links below, will  take you to a page on each issue. On each page you will find

My advice

My experience

Usually some pictures and/or videos

What the experts say

My rule number x

 

Why create this site?

I became a C6 quad as a result of a diving accident. It happened at a beach in 1986. I have lived completely independently since 1989 – 25 years.

I was motivated to make this site after speaking with a few friends who are very experienced spinal injury professionals. They told me two things that I found surprising. Firstly they said that in their careers they had come across somewhere between zero and one other C6 that lives independently like me. Secondly they said people who become C6s in the 21st century are not encouraged to, or even told they can, become independent.

Examples of spinal injury professionals saying independence for C6s is impossible include apparalyzed and medicine, and worst of all the consortium for spinal cord medicine. Fortunately they don’t all have that view. Experts that have a different view include spinalhub and spinal injury net.

It seems to me that this ‘don’t even try’ approach is very unfortunate for the C6s being advised by these organisations, and much less importantly, unnecessarily expensive for governments and insurers.

Obviously its up to each C6 to determine their own life, however if you do not know the options available you cannot make an informed choice. For this reason I thought it would be potentially useful and important for those recent C6s, and spinal injury professionals, to be shown that independence is possible for C6s.

Once C6s view the site I am hopeful they will get an understanding of  what can be done and how. They will then be in a position to make an informed decision about the level of independence that suits them, and work towards that.

In other words, they will be able the choose their own destination and make their own horizons, rather than being at the mercy of a professional’s opinion about where their limits lie.

3 - 1

11 comments on “1. ABOUT

  • Hi there,

    I’m a C5/6 quad living on my own but I have a permanent care giver living in and assisting me. When she goes off on weekends I manage by myself…so I can do things like transfer on/off bed, self catheterize, get dressed(no socks), etc…basic stuff. I still however need to figure out how to get my chair in/out of the car by myself and also the bowel routine thing. Those are the two biggest obstacles I have left. Working on them but not as often as I should – need to get out of this comfort zone.
    I’m 38 now and have always wondered when as a quad I’d get to the point where physically I could not do things like transfer, push, etc anymore. You said you’re around 50 now? Can you feel you’re getting weaker or does it just depend on how you stay in shape you think?

    Cheers,
    Doug
    (South Africa)

    • Hi – nice to hear from you. The bowel thing and chair thing were the hardest for me too. I’ll be 50 next year. Since I turned 40 I keep expecting to see the effects of getting weaker but I can’t say I have yet really. In the last few years everything seems harder, if feels like a bigger effort, but when I test it objectively, say I push up a hill that I used to push up but always found difficult, I find I can still do it and it’s no more difficult than it always was. So I don’t think I’m actually physically weaker so much as mentally older and more tired plus I have more spasm than I did and I’m more risk averse. Lots of these things have happened just in the last few years and may well be due to my bladder problems rather than age.

      So My experience seems to be that I am at least as physically strong as I always was, and hopefully that will remain till 50 or so, but attitude wise I have found myself getting more cautious and slowing down from 45 onwards. I’m still independent around my house and my neighbourhood, but I don’t push long distances as much, I don’t get in and out of cars as much, and I don’t travel as much as I once did

  • Thanks for the feedback.
    I’m one of those that transfer feet down. I’ve experienced shoulder pain but it appears to come and go…weather/temperature plays a part I think. If I put my legs up first then spasms would throw me back…but I’ll give it another go..
    Also had the issue, after purchasing a newer model car, that the range between car seat and chair was quite a bit more than before. I put a pillow in between the two just in case my butt doesn’t reach the seat when transferring.
    When doing bowels, do you transfer from bed onto commode, then push to bathroom, then insert suppository?
    Do you have a rigid or fold-up chair? I have those easy release quad friendly things to get the wheels off…so taking them off is quick, but getting them on again is a mission..any tips on that?
    Have you experienced any problems with your butt? Pressure sores etc? Do you apply any cream or something to keep the skin strong?

    hope you don’t mind the questions…like you said, we need to ask around and get as many opinions we can.

    Thanks,
    Doug

  • hi doug
    for the detail on bowels go to that page of the site. there is pictures and detail there https://theindependentc6.wordpress.com/7-bowels/

    on my chair – that detail including pix and video is on the pushing page https://theindependentc6.wordpress.com/11-pushing/

    re the putting wheels back on – part 3 of the 4 videos on the car page shows me putting the wheels on. once i have positioned the chair correctly i don’t have much trouble putting the wheels on. positioning the chair can be tricky in some situations – if its windy and the car door won’t stay open for example
    https://theindependentc6.wordpress.com/13-car/

    i’ve never had pressure sores. not sure why – i have always used a roho cushion and been relatively fit and healthy, and i sleep on my side to give my bum a rest all night, but i don’t do much else

  • Hi,

    Thanks…so I see you have a TI Lite. I use a Melrose. Awesome vids of you getting into your cabby and then putting the chair in and out. Really inspired me to have a propper go at it again.
    My axels slide out when I release them though. Yours seem to stay put…which makes it easier to push them in without the axel pulling out on the other side. I’ll be looking for ones similar to yours then.

    Cheers.

  • Hello-
    I love that you have put all this information together. My dad is a c6-7 quad and I’m founder and executive director of AbleThrive- we are working to connect people with disabilities and their families to the information and resources they need to thrive. I’d love to talk to you more about it- perhaps shoot me an email? brittany (at) ablethrive (dot) com or let me know how to reach you.

    Open to talk to you or anyone else reading this post who have adapted or who are in the process of adapting his or her life.

    Thanks!
    Brittany

  • Leave a Reply

    Fill in your details below or click an icon to log in:

    WordPress.com Logo

    You are commenting using your WordPress.com account. Log Out /  Change )

    Google photo

    You are commenting using your Google account. Log Out /  Change )

    Twitter picture

    You are commenting using your Twitter account. Log Out /  Change )

    Facebook photo

    You are commenting using your Facebook account. Log Out /  Change )

    Connecting to %s

    %d bloggers like this: