18th of August 2021
Research into altering the mental state to improve gait
An interview with Anouk Tosserams
Anouk Tosserams is a doctoral candidate at the Department of Rehabilitation Medicine and Neurology of the Radboudumc in Nijmegen. She researches the detours that people with Parkinson’s disease use to improve or circumvent their walking problems. Recently she was awarded a KNAW van Leersum prize. With the accompanying grant, she will be heading to the Brain and Mind Centre in Sydney, Australia in May 2022. There, she will zoom in on one of the compensation strategies that is still underexposed: Altering one’s mental state. In this blog I will interview Anouk about her research.
Anouk Tosserams by Sparks
Part I: Overcoming walking problems
Q: What is the core of your research?
A: My PhD research is about personalising detours in gait problems. That’s not just about freezing – the feeling that you’re nailed to the ground – but also about other gait problems such as stumbling, postural problems, dystonia – involuntary muscle contractions – and things like that.
Q: What do you mean by personalising?
A: Not every detour works for everyone. It depends on the person, on the context. We want to be able to give much more specific advice to the patient in front of us.
Q: What did your research subjects have to do to answer your research questions?
A: In our walking lab 101 people with Parkinson’s have tried different detours. We looked at how effective they were for that person. We tried six different types of detours: external cues (walking to the beat of a metronome or with your favorite music playing), internal cues (counting within yourself), changing your balance by shifting your weight from one leg to the other, imitating someone else’s movement, visualising walking and using a different walking pattern. We then analysed all the data to see if there was a relationship between the effect of the strategy, a number of personal characteristics (such as age, gender, and the number of years the person has Parkinson’s disease), and a number of clinical outcome measures (such as scores on tests of memory, attention, balance, the presence of freezing, how musically gifted the person is, etc.)
Q: What association did you find?
A: We saw an association between the success of an external cue – such as walking to the beat of a metronome or to one’s favourite music – and the cognitive abilities needed to apply such a strategy. To get a better idea of why different strategies improve walking in many people with Parkinson’s, we did a follow-up study with 20 people. We wanted to know: how does it work in the brain? To find out, we made brain films while people were walking. That way we could see which areas of the brain lit up when following a particular type of detour. It turns out that different detours stimulate different brain areas. When counting, for example, you see brain activity mainly in the front of the head.
Q: What are the practical benefits for people with Parkinson’s of such research results?
A: Scientifically speaking, this is interesting information, but people with Parkinson’s disease don’t benefit from this type of information yet. Suppose the metronome works well for you. That does not mean that you will use it in daily practice. The detours must not only work but also be acceptable. You will have to see yourself using it. And in practice, you see that quite a few strategies are excluded because people do not want to use them in daily life. But in the longer term, knowledge of mechanisms of action and associations with personal characteristics does contribute to working towards a more personalised form of gait rehabilitation.
Part II: Altering the mental state
Q: You have not yet tested ‘Altering the mental state’ as a detour for gait problems, right?
A: That is correct. Just by the lab setting itself you already alter the mental state. And the measurability of cognitive strategies is much more difficult. So you have to think very carefully about a research design. That’s no reason not to embark on this type of research, but it is much more difficult.
Q: Can you give some examples of altering the mental state?
A: Definitely. Dancing is an example of changing the mental state. It is about the role of emotion and rhythm together.
Altering the mental state is a continuum between relaxation and self-stimulation. On the one hand, it is about relaxing, preventing anxiety. For example with mindfulness or breathing exercises. It can also help to always take a walking stick with you. You take it with you ‘just in case’. A kind of backup plan. Only the thought that you have a backup plan, provides relaxation. And if this backup plan works, you then build up self-confidence. That also helps you to relax.
At the other end of the continuum, you find “self-stimulation”. If your emotion is very extreme – for example, you are very happy, very angry, or think something is terrific – then suddenly you can walk better. Or people who deliberately make themselves stressed, call themselves names. An example is a man who had difficulty getting up from his chair. He then sets an alarm clock for three seconds and when the alarm goes off he is so startled by it that he can get up more easily. Or the example of someone who has been programming for three hours in a row. That person said that after that he didn’t have Parkinson’s for one hour. This part of the continuum is all about a general alertnes, arousal. There is also a relationship with the concept of flow.
Q: I read that people who have difficulty with attention switching – one of the obstacles that people frequently mention in the COPIED study – are more likely to suffer from freezing (Moulika, 2021). That alone shows how intertwined obstacles in thinking and moving are. By bypassing obstacles in thinking, could you also bypass obstacles in walking?
A: We also see this in our research. We let people do attention tasks and see that people who switch their attention more easily have fewer problems with freezing.
Q: Do you see any influence of age or how long someone has had Parkinson’s?
No, you can’t say that. There are people who have had Parkinson’s for three years and suffer from freezing and there are patients who have had it for a very long time without it. So well, I guess it’s never going to be a cookbook of medicine.
Q: You received a grant to focus on ‘altering the mental state’ as a compensation strategy for gait problems. Can you tell us what exactly you will be doing in Sydney?
A: I’m going to take the data from a questionnaire survey amongst 4000 people with Parkinson’s disease with me. There I am going to zoom in on the answers given to questions in the category ‘altering the mental state’. I am going to unravel which concepts this category consists of. Then, together with the Australian researchers, I am going to think about how you could test whether the picture that then emerges is correct. Which experiment would then be necessary? In other words: How do we make this category of detours evidence-based?
Q: Why is this evidence so important? People can try out the detours as we speak already?
A: Compensation strategies are an essential part of managing gait disturbances in people with Parkinson’s disease. We conducted an online survey of 320 healthcare professionals and only 35% of them were aware of all seven types of detours (Tosserams, 2020). To close the knowledge gap, it is important that the lesser-known detours are also included in the guidelines for physiotherapy and occupational therapy in Parkinson’s disease. And that will only happen if there is enough evidence.
The 7 categories of detours (see an earlier blog )
Q: Shouldn’t science just become more transferable?
That too. I myself find the science behind it very interesting, of course, but more awareness would already give more than 90% of the impact. A study like this can be turned into clinical impact quite quickly. To give an example: I sent a link to your blog post to all the 300 people I had approached for my research who did not meet the conditions for enrollment. I received many positive responses. It doesn’t have to be difficult. We are also working on detour visibility by giving a lecture on this topic at the basic training of physiotherapists who are members of ParkinsonNet. And we are also working on setting up an interactive online walking platform where people can share their detours with each other.
Part III: On hope
Q: What do you hope for?
I hope that compensation strategies will become much better known among people with Parkinson’s and their caregivers. These detours are essential in gait rehabilitation. The strength is that you can try them out yourself. You don’t need a hospital and it can make such a difference to your sense of independence if you manage to apply some of them. I even hope that the detours become so well known that people dare to play with them. Of the 100 people with Parkinson’s who visited the walking lab, all of them learned a new strategy. And when you see someone’s face when they succeed, it is so rewarding and wonderful.
Q: What do you hope for for yourself?
I would really like to become a neurologist in a university hospital. In that way I can combine seeing patients with research. That is my dream job. The connection to practice makes it easier to not lose sight of what science is there for.
Q: What would you like to say to people with Parkinson’s disease?
I would like to challenge people to just try it. And to ask their caregivers to try it together. And to try the detours in the context where they expect to need them. Combine detours. In short: put your own spin to it! In any case, don’t ban an activity just because you have Parkinson’s. Keep challenging yourself. Something that seems impossible may turn out to be possible after all.
Sparks
References and articles for inspiration
(2021). Attention switching deficit in patients of Parkinson’s disease who experience freezing of gait, Applied Neuropsychology: Adult, https://doi.org/10.1080/23279095.2021.1951268 (Closed Access)
Morris, R., Smulders, K., Peterson, D.S. et al. (2020). Cognitive function in people with and without freezing of gait in Parkinson’s disease. npj Parkinsons Dis. 6, 9. https://doi.org/10.1038/s41531-020-0111-7 (Open Access)
Scholl JL, Espinoza AI, Leedom M, et al. Relationships between freezing of gait severity and cognitive deficits in Parkinson’s disease. medRxiv; 2021. https://doi.org/10.1101/2021.04.29.21256338 (Open Accesss)
Tosserams, A., Mazaheri, M., Vart, P. et al. (2021). Sex and freezing of gait in Parkinson’s disease: a systematic review and meta-analysis. J Neurol 268, 125–132. https://doi.org/10.1007/s00415-020-10117-w (Open Access)
Tosserams, A., Araújo, R., Pringsheim, T., Post, B., Darweesh, S. K. L., IntHout, J., & Bloem, B. R. (2018). Underrepresentation of women in Parkinson’s disease trials. Movement Disorders. https://doi.org/10.1002/mds.27505 (Closed Access)
Tosserams, A., Nijkrake, M. J., Sturkenboom, I., Bloem, B. R., & Nonnekes, J. (2020). Perceptions of Compensation Strategies for Gait Impairments in Parkinson’s Disease: A Survey Among 320 Healthcare Professionals. Journal of Parkinson’s disease, 10(4), 1775–1778. https://doi.org/10.3233/JPD-202176 (Open Access)
Walton, C. C., Mowszowski, L., Gilat, M., Hall, J. M., O’Callaghan, C., Muller, A. J., Georgiades, M., Szeto, J., Ehgoetz Martens, K. A., Shine, J. M., Naismith, S. L., & Lewis, S. (2018). Cognitive training for freezing of gait in Parkinson’s disease: a randomized controlled trial. NPJ Parkinson’s disease, 4, 15. https://doi.org/10.1038/s41531-018-0052-6 (Open Access)