Here is the third part of an exert from an interview with a good friend of ours who lives with a SCI. The first few focus on the use of a standing frame which can be a useful adjunct to therapy for some people. These are his unedited words and Pete pulls no punches, this is based on his experience and opinion. If you are easily offended by the use of strong language best to not continue reading, don't say you haven't been warned...
Interviewer: Do you use a standing frame now? if yes why? if no why not?
Pete: I don’t use one currently, despite the benefits we’ve talked about. I bought an Oswestry frame on eBay for £200 earlier this year and it’s used for other things. I did use it periodically for a few months. Whilst it was nice to be reminded of how tall I am, the major drawback of this standing frame is it takes two people to lift me upright into a standing position because I no longer have the neurology to do it myself. The two people most immediately available at present are my parents because I live on their property. Though they’re capable of pushing me into the standing frame, they can’t do it without making exertion noises because they’re old. One day my father stacked it on the deck and bruised his ribs. A few days later I asked them to help me with the standing frame and my father said he wasn’t up to it because he hadn’t recovered from his fall. I was never happy about having to be helped by my parents with such a physical aspect of what is basically personal care. My father saying ‘no’ was the last straw. That’s the kind of person I am. You only have to say no to me once and I’ll never ask you for the same favour again. It’s not about resentment, it’s about independence. I don’t want to regress, I don’t want to be anyone’s pain-in-the-arse, and my parents won’t be around forever.
I need a standing routine to reduce my spasms and to help unfold me for the reasons I’ve already explained, but there are two other motivating factors. I suspect that stretching in general, particularly the psoas muscles, can have a positive influence on your energy levels and subsequently your state of mind. There’s an ex-Navy SEAL named David Goggins who wrote a book called ‘Can’t Hurt Me’. David has spoken about experiencing crippling fatigue for no obvious reason, despite being one of the fittest men on Earth. He believes a lot of stress and tension manifests in the psoas, and the way he described his symptoms before he focussed on stretching sounded very much like what I experience in terms of seemingly inexplicable exhaustion. When I stretch routinely, I feel less exhausted.
The second motivating factor for me to use a standing frame is I’m aiming to try para-cycling because my orthopaedic surgeon told me I was out of my mind to be playing rugby with a 14-level fusion. To compete in cycling as a quadriplegic, you need to use a recumbent handcycle, and to do so you need to be able to lie flat. When I get in my handcycle, if I coil-up like a teenager trying to light his own fart, I’m not going to be very aerodynamic and the other cyclists will laugh at me. So, consequently I’m saving up to buy the dynamic standing fame I talked about earlier. The advantage of this standing frame is the user can get in it and pump themselves up to standing height using an inbuilt crank. Once you’re upright, it’s a fitness machine. The drawback is it costs almost six thousand quid and takes up a bit more space than my current Oswestry frame.