From the very beginning Marrianne has always been keen to ‘blaze her own trail’ in the SCI world. With a host of people telling her to do this, don’t do that, try this, don’t try that, trying and deciding for themselves was always Marrianne and Andy’s objective.
Andy tells us… We didn’t expect to find an unheard of miracle cure. Finding progress (physically and psychologically), working hard, pushing the limits and keeping healthy were always the goals. Of course, Marrianne’s ultimate goal is to one day walk again and with RST’s support, when the research world make a break through Marrianne will be ready.
Sticking it out
Andy and Marrianne have met some great people and tried many different things in the quest for progress. Of course this makes it difficult to pin point one thing as the most successful, but what they have done is give everything time and a ‘good shot’. There are no short cuts to progress. Below are the key areas/people Marrianne is currently working with.
The Prime Physio Centre
Andy tells us… Working with the right people has always been key for us. We don’t want people to promise us the world, we want to work with people who understand what progress is; people who understand how something very tiny can mean so much when it comes to SCI. Motivated, driven people who keep things fresh. For us this is the Prime Physio Team. Marrianne visits here twice a week for two hours each time. Working closely and regularly with the Prime team also means a good sense of humor is vital. Banter is rife! Combine this with some of the best ideas and technology around and it’s the perfect partnership.
Thanks to Prime, Marrianne was the first c4 level SCI in the world to use the Ekso machine; opening the doors for others. FES also plays a big part in the rehab programs at Prime. With numerous published papers on the benefits of FES, Marrianne makes sure she uses it whenever she can. Check out the Prime website here http://primephysio.co.uk/
Miami – Biofeedback
Miami, a vibrant city situated in America’s “sunshine state”, Florida. With miles of beaches and numerous restaurants and shops, it’s a place where the rich and famous frequent and often mingle amongst visitors from all over the world. The city is also home to The Miami Jewish Home and Hospital (The MJHH). The MJHH is where the laboratories of The Brucker Biofeedback team are housed – devised after a life time of study by the late Professor Bernard Brucker. In short, Bio-feedback is a sophisticated machine designed to measure the neurological connection between the brain and muscle. If a muscle doesn’t move it can still have a connection but perhaps it’s too weak to engage a movement. The biofeedback program can help identify weak connections and help improve them. In 2007 Marrianne paid her first visit to Miami, where she was fortunate enough to work with the late, great Professor Brucker before he sadly passed away.
Professor Brucker’s work and lifetime of study showed how the body can continue to repair itself years after an injury. It might be a tiny amount of repair, but a little can mean a lot with SCI.
Today, Professor Brucker’s team continue his work and Marrianne has visited annually since that first inspiring trip
Marrianne always remembers the Prof explaining that bio-feedback is by no means any kind of miracle cure and isn’t a replacement for any kind of therapy you currently do. In its simplest form, it is a way of gauging the body’s natural recovery. The hard work is done throughout the year at physio, so for Marrianne an annual visit is a great boost after 12 months of ‘rehab’.
Not all work an no play!
Holidaying is of course a lot harder since Marrianne’s accident but not impossible. Enjoying life is an equally important part of Marrianne’s progress. Getting the balance right is vital. Miami is a great place to work but also to play! Taking advantage of the down time can work wonders!
Functional Electrical Stimulation, (FES). There are numerous published papers on the advantages of using FES. The team at Prime physio are big advocates and use it to help muscle strength/tone via a number of different exercises. If you have any FES questions we’d recommend you speak to these guys http://www.anatomicalconcepts.com/
In 2012 Marrianne was invited to take part in a study for FES rowing at Brunel University.
Being the highest injured lady to FES row in the world was another barrier to overcome for Marrianne. (in fact there was only one other c4 level person rowing at that time – our friend Josh)
Rowing three times a week, for 30mins a session, is impressive going for a high level tetraplegic. It has certainly led to impressive muscle tone and power in Marrianne’s legs and the CV workout is like nothing we have been able to replicate since Marrianne’s injury. 170 + bpm and a lactate level in the blood on a par with an abled bodied person rowing.
A lot of rehab is done at home. Lots of ideas have been picked up over time, along with a fair share of equipment. Our advice to those new to SCI and looking to buy some bits would be “don’t rush”. Everything to do with SCI is so expensive. Take your time before you buy lots of things. Speak to people who know first, to see what is right for you. Sadly, there are always people who’ll take advantage. We are always happy to share our thoughts and experiences.
Don’t think that the only way to find progress is by spending big money. Hard work and belief are the key and with a little imagination and a bit of knowhow, you’ll be surprised how simple ‘rehab’ can be.