On our Café last week (22 April) we were thrilled to be joined by Neurokinex’s Jane Symonds, Clinical Lead Physiotherapist, and Jenny Suggitt, Lead Occupational Therapist. They spoke about the services provided by Neurokinex, the science behind activity-based rehabilitation and all things wellbeing and exercise.
If you missed the café fear not. Read on to find out more about Neurokinex and the tips and advice shared by Jane and Jenny!
Q. Can you give an overview as to what Neurokinex does and the services it offers its clients?
A. Neurokinex is a not-for-profit organisation and Charitable Trust. We provide specialised neurological activity-based rehabilitation for individuals living with various levels of paralysis.
We operate from three locations: Hemel Hempstead, Gatwick and Bristol. Our approach is different from traditional rehab, in that we offer activity-based rehabilitation which is based on a concept from USA (read more here). We recognise the importance of involving all of your body in activity.
This means that we can optimise the strength and endurance of the muscles that are functioning, plus also stimulate the muscles that have been most affected by injury or condition. Focusing on the entire body can help to re-establish a pathway between the paralysed and functioning parts.
Q.With the current situation how are you virtually supporting your clients?
A. The centres are currently closed, but we are hopeful about getting started again soon. Whilst we can’t provide the normal rehab, there are several ways that we are trying to help. Firstly, through social media we are providing information and posting workout challenges and games. We are also signposting to other services such as SIA and Back Up. We have launched virtual services, providing exercise programmes with videos and video link with trainers to clients at home. We also have an online community for our clients to stay in touch and support each other during the closure.
Q. Can you tell us a bit about the research behind activity-based rehab and why it’s so important?
A. Traditional rehab typically focuses on compensation – compensating for lost motor control below the level of injury. Activity-based rehab (ABR) focuses on neuroplasticity and recovery. Neuroplasticity is: “The ability of the nervous system to change structurally and functionally as a result of input from the environment.”
Extensive evidence has shown the ABR encourages neuroplasticity to occur. Areas around the site of the spinal cord injury are in many cases undamaged and capable of transmitting information up and down the spinal cord. Evidence shows that these undamaged areas can show plasticity and take on different roles to those that they had before. The repetitive, task-specific and purposeful activities of ABR are key in encouraging this.
It’s also been discovered that neuronal circuitry exists within the spinal cord without input provided from the brain. (The spine responds to sensory input from below the injury without receiving input from above the injury, i.e. the brain.)
Q. Some people might associate rehabilitation as something that only takes place in the weeks and months following an injury. Can you give any examples of people you’ve helped in terms of their function/mobility further down the line following an injury or diagnosis?
A. Obviously, just after injury is a really important time for rehab and that’s why we offer the six free sessions after discharge from hospital. But we have some lovely examples of people who have been injured for much longer making changes. One of our clients has tetraplegia and uses a powered wheelchair. He started the 6 free sessions we offer. He went back to work so just came in once a week. He was more than two years post injury before he stood up for the first time. He carried on making progress and at two years and nine months, became able to walk with a frame. He’s still training and making improvements. This is important as it shows that improvements can happen after the two-year milestone.
We had another client who came for an assessment not long after he left hospital, but he developed a pressure sore and couldn’t start his rehab for another year. This gentleman had paraplegia and used a self-propelling wheelchair. He came back when his pressure sore had healed a year later and is now also walking with a frame. This shows that even if rehabilitation is delayed, there is still great potential for improvements to be made.
There is more new technology becoming available to help people who have been injured for longer to promote neuroplasticity. We use wide pulse stimulation, which is similar to Functional Electrical Stimulation, but has different parameters and had been shown to stimulate the spinal cord and brain when applied over the target muscles. This helps the body to reconnect the disturbed circuitry from the SCI.
The most exciting thing at the moment is that we are part-way through a research study, using transcutaneous spinal cord stimulation, so electrodes on the surface of the spinal cord to excite the nerves of the spinal cord. We are using it on individuals with chronic SCI. We are really grateful to the International Spinal Research Trust for funding the study and although only part-way through, and I’m not able to say too much at this stage, it’s really interesting and very promising technology.
Q. Do you have any tips or advice for people to promote their wellbeing during isolation?
Our general advice for people during isolation would be to:
- Be aware that we might not be moving around so much at home as normal
- Exercise at your own pace and work within your limits
- Gradually increase your activity levels
- You don’t need expensive equipment. Make use the things around you – balls, balloons, cans of chopped tomatoes! You can also complete exercises that doesn’t need any equipment, such as shadow boxing or running arms
- Try to get moving every hour or two, and get out if you have outdoor space
- Make use of the free resources available – YouTube has wheelchair-based exercise workouts, adaptive yoga and mindfulness. Look out for our exercise challenges too on Neurokinex social media sites
- Set a timetable for your activities
- Make it sociable if possible – do it with friends/family, via video call if necessary
- Make the most of the positives of this situation, such as having more time to look after yourself through eating, taking care of your mental health and exercising
- Finally, set goals as to what you’d like to achieve and give yourself a deadline to keep on you track and motivated.
Visit the Neurokinex website for more information and email info@neurokinex.org for rehab support during and after the lockdown.
More information about our regular cafes can be found on our support network page.
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