Andy (my partner and the driving force behind RST) has asked me to write a blog several times before but it has never really happened. I’m not particularly one for writing or talking in public; I prefer to let my actions speak on my behalf (and I leave Andy to do all the talking haha!) This time though I thought I’d give it a go. I’m not looking for agreement or approval, this blog is simply a chance for me to share a few of my thoughts for anyone who might take an interest.
Like many with a spinal cord injury, I suspect, I’ve never really got too excited when I’ve read or seen an article about ‘the latest breakthrough’. This isn’t to say I’m not interested or I don’t appreciate the people out there striving for breakthroughs, quite the contrary. Let’s just say I’m cautious and I leave loving friends and family to get excited on my behalf. What frustrates me is when I see others with spinal cord injuries on TV and in the media dismissing research efforts because they are happy being in a wheelchair and they wouldn’t change their life blah blah. Of course everyone is entitled to their opinion, but to say my thoughts differ would be an understatement.
I was paralysed from the shoulders down in 2004. From day one I didn’t get bogged down with being ‘complete’ or ‘incomplete’ or listening to what I should/shouldn’t be able to do. I’ve never spent hours online reading opinions or chatting on forums about SCI. I’ve chosen my own path and I’ve decided for myself how I want to approach things. Some things have worked and some things haven’t, but I have no regrets. I’ve worked hard and tried things for myself, nobody else. I’ve regained some movement and I keep very healthy. Activity based physiotherapy has helped me both physically and psychologically.
The benefits of ‘working out’ were especially beneficial to my mind in the early days of coming to terms with my injury. These kind of benefits are (slightly) more documented now but back in 2004 there were lots of people telling me ‘there’s no point”, “you’re wasting your time”. I’ve never expected miracles but always expected progress (mind and body). Those who know me, know what progress I’ve made and the small goals I’ve reached. They also know how hard I’ve worked and continue to work. Progress doesn’t just happen and I still have a long, long way to go.
I don’t think of myself as being competitive (although the team at Prime Physio might disagree!) but I’d be lying if I said seeing others with injuries doing things I can’t do doesn’t give me a little extra motivation. Some might let this get them down but for me it’s a tool to spur myself on. Another great incentive for me has always been the research aspect. Knowing there are people working hard in the research world to find answers is something I have drawn upon many times.
I enjoy my life, I’m a happy and positive person. Rehab is just one aspect of my life. I work hard but I play hard too. I’m no ‘gym junky’. I have an amazing family and some amazing friends.
I do brilliant things whether it’s travelling overseas, partying in Vegas, having a meal with friends in my local or just having a hug with my boys (the four legged variety)
BUT … there isn’t a day that goes by when I don’t wish I wasn’t in a wheelchair. Using a chair is far more than not walking. I hate having to have people care for me. I hate needing help to go to the toilet, to shower, to dry my hair, to get out of bed. I wish I could take my dogs out without any help, I wish I could make myself a ‘cuppa’ when I fancy it. I wish my fingers would work, I wish many, many things. Whilst I feel all these things, they don’t control my life or who I am. Wanting a breakthrough doesn’t mean I’m unhappy. Everybody has a story, everybody has their problems to face and everybody deals with things differently. I love and embrace life but I can’t wait for the day when I can walk away from my wheelchair.
Of course the ultimate goal for the research world is to find the answer to reversing paralysis and there are people all over the world striving for this. There are also many people out there trying to achieve goals to improve the quality of life for others in my position. Whether it’s ideas to improve fertility, new rehab equipment, bladder function… you name it and I’m sure someone is looking in to it.
One thing that all research projects need is support. The more support they have, the quicker things can happen. Support of course comes in many forms; money is key, but not the only factor. Those who can’t contribute financially can help in many equally important ways. Awareness is a major stepping stone and everyone can help raise awareness. Whether it’s a post on Facebook, a tweet or chatting to a neighbour… we can all play a part in raising awareness of the horrors SCI brings and the importance of research – and who better to paint a picture than those of us with injuries and all the loved ones it affects?
Many believe that no breakthroughs will happen ‘in our life time’; they could be right, but they could be wrong! Nobody knows, but don’t use that as a reason not to help. What about the next generation? If nothing else, surely we owe it to our children to ensure they don’t have to go through the exact same devastating situation we have?
The Miami Project
I realise that not everyone is in the privileged position I am in and able to come to Miami to assist at ‘The world’s most comprehensive research centre’ and I’m not for a second suggesting that everyone should be coming out here but I think that it is important that those who are able to help research …do. It might just be answering a few questions on an email, we can all play a part. Researchers need input from people with injuries. They need ideas and feedback to enable their research to go to the next level.
I’ve been coming to Miami since 2007, when I first started working with the late, great Professor Brucker and his biofeedback team. It’s a place I’ve fallen in love with and have made some great friends in. The fact the sun shines a lot is a big bonus too. Cold weather and spinal cord injury don’t mix!! This trip I was working at the ‘Miami Project’, housed within Miami University, to help with a hand movement study. The MP is a place that screams positivity at you the moment you enter the park in front of the building. A homage to Christopher Reeve greets you and welcomes you in.
‘Hope’ is a dirty word to many professionals in the SCI world but everybody needs hope. False hope is something I’ve never hung my hat on, you just need to manage your expectations and keep an open mind. I embrace hope.
Inside the MP the facility is awash with people doing different studies; people training in the gym, walking in the Ekso, on the Lokomat machine, people testing their breathing – so much going on.
It gives you a lift just to be here and to see scientists and those with injuries mixing together on a daily basis. In the UK the closest contact most people with an injury have with the science world is via the internet or the occasional lab tour. I take my hat off to everyone involved with the Miami Project, especially the Buoniconti Fund who help to finance the project. I wish there was a similar facility at one of the universities in England. Research needs to be open and engaging. The occasional newsletter doesn’t cut it. Visuals and interaction…that’s how you do it.
I’m greeted by the lovely Katie in the MP reception, someone I had the pleasure in meeting when I was touring the facility during my last visit to Miami. Katie is a PhD student close to finishing her studies and is over the moon that we are helping with the project. Passion to make a difference oozes from her and makes me excited to be involved.
I won’t pretend to know the scientific ins and outs of the study but I do know that nobody will work harder than I to help it progress. In short, electrical stimulation (which I use at home all the time via my FES machine) contracts the wrist muscles to open and close my fist. Normally the stimulation is triggered by a third party (i.e. a Physio pressing a button) Here they are working on a computer to read your thoughts and trigger the stimulation. So if you think ‘open hand’ the computer triggers the stimulation to open the hand. They want to develop this idea to offer practical everyday use to people like me with no hand movement. Have a look at the short video clip by clicking on the link below. (It will open in a new window/tab)
On day one I was delighted to record the highest data reading, from all participants (but I’m not competitive…. honest!). Katie used my visit as a case study for a presentation to academics and local Miami businesses. I hope my small input can help attract more interest and funding to take the project to the next stage and of course I’m looking forward to helping again.
The research world needs bright, charismatic people like Katie to keep moving it forward, to engage people outside of the research bubble and to give encouragement to those with injuries. I wish I lived closer and could help more. Keep up the great work Katie. (If you’d like to speak to Katie about the study, let us know and we’ll hook you up. Info@rstrust.com)
Thanks for taking the time to hear my thoughts. Until next time…. #TeamRST