Parkinson’s and the art of hitting CTRL-ALT-DEL
An interview with Willem Oudegeest
18 oktober 2019
It doesn’t feel good to be constantly dependent on the neurologist and pills. You also want to ‘fight back’ a bit. The worst thing you can do is to deprive Parkinson’s patients. People can still learn, recover and bring about new connections in their brains | Willem Oudegeest
Being in control
I have been a fan of Willem Oudegeest since I first heard him speak at the Jong & Parkinson: Moving on congress which took place on 4 November 2018. I had my Parkinson’s diagnosis in my pocket for six months by then. His lecture about ‘Moving big’ and the exercises we subsequently did, touched me deeply. In the half hour that we were practicing, I got a feeling of being in control that I hadn’t had since my diagnosis.
Promoting self-control is Oudegeest’s second nature. After studying medicine, he started his career in a ward with bedridden patients who had all been infected with MRSA bacteria and were more or less given up. “All the things I learned during my medical training didn’t work. But one thing I knew for sure. If you stay in bed, you die!” Oudegeest exclaims. He managed to mobilize people, activate them and the spirits in the department lifted. By looking at what the patients were still able to do and not to give up, 29 out of 30 left the building alive and kicking. This experience marked Oudegeest for life and eventually he ended up in rehabilitation medicine: “Here you look at the possibilities, at what you still have and can instead of looking at everything that is broken.”
Understanding your disease
“I think it is important that people understand their disease, because otherwise you cannot take control,” Oudegeest states. He thinks Parkinson’s rehabilitation in the Netherlands has started on the wrong foot. “We have told people with Parkinson’s that they have a neurodegenerative disorder, which makes your symptoms get worse and worse over the years. But that now turns out to be a misconception,” the rehabilitation doctor states.
Oudegeest explains what he means: “We now know that the conductor of the brain of someone with Parkinson’s – the basal ganglia – is declining. But the good news is that the orchestra is still there. Because the conductor gives rather sloppy instructions, this leads to a reduced intensity of movement and a changed body feeling in the patient. The orchestra also does not know very well when to start playing and when the orchestra starts, it is not so sure how to stop. The conductor must therefore be retrained! ”
The mismatch that arises between how someone thinks they move and the way they actually move leads to a wide variety of problems, such as a facial expression that flattens, an increasingly tickler handwriting, a softer voice, dropping stuff because the grip isn’ts as firm as one thinks, bump into things, falling on the street because someone doesn’t lift his or her leg high enough, etc.
Where movement starts
“Moving doesn’t start with motor skills, but expresses itself in motor skills”, Oudegeest explains further. “Movement starts with feeling, perceiving the environment and feedback from those sensory perceptions to the basal ganglia. But the automatic feedback loop no longer works so well in people with Parkinson’s”.
Oudegeest gives an example: “Suppose you want to sit down on a chair. Normally you take in the surroundings and form an image of the chair in your head before you turn your back to it and then – automatically – exactly know how far your buttocks are away from the chair and sit on it in exactly the right way. In tune. For a person with Parkinson’s disease, it’s different. The conductor interprets the environment differently – the sensory information is no longer processed automatically in the right way – and the orchestra thinks that the buttocks are already there. Then the orchestra stops playing and someone ‘falls’ into his or her chair”.
Resetting the conductor
If you don’t do something anymore, it doesn’t mean you can’t do it anymore | Andreas Dijkhuis in the Dutch ‘Parkinson Magazine’ from October 2018 after having followed an LSVT-BIG training at Meander Medical Centre.
I’m beginning to understand the principle. The conductor can no longer conduct on autopilot. “Muddling through the same program rarely produces anything”, Oudegeest knows. The key question now, of course, is: How can we get the conductor – and thus the orchestra – back in line?
According to the rehabilitation doctor, we have to switch from the autopilot to our conscious program. “The conductor must be retrained in giving clearer instructions to enable the orchestra to play well again for the audience. The nice thing is that this is possible. By consciously giving exaggerated instructions to the orchestra, the movements of a person with Parkinson’s disease become more normal and after intensive training a patient can automate this new behaviour. People with Parkinson’s disease just have to learn to take up more space!” Oudegeest exclaims.
But then who or what wakes up the conductor? With the metaphor of Oudegeest of the conductor in mind, I see the director of the concert hall appear before me. She has her residence in our cortex. As soon as the director realises that the audience is running away, she approaches her conductor and invites him to start the overture in an exaggerated way, to speak louder, to make larger movements, to think bigger than usual. And the orchestra reacts relieved and plays along beautifully.
Bianca tries to get up from her chair but falls back.
She shuts down the failing programm with CTRL-ALT-DEL, sits down consciously, clearly says START to herself, and begins to tilt her body overly forward to far beyond her knees.
By moving in a way that feels ‘exaggerated’ for Bianca, she in fact comes out ‘normal’, moving the center of gravity of her body where it needs to be to be able to succesfully stand up.
A new user manual
You can mirror someone with Parkinson’s into the swamp | Willem Oudegeest
With a conductor you can no longer automatically rely on, the user manual of a person with Parkinson’s irrevocably changes. Oudegeest has noticed that partners also need to learn to live with someone with Parkinson’s disease in the right way. “For example, you hear someone say to his or her partner, “Don’t shuffle your feet like that.” But that doesn’t help the conductor at all. The conductor hears something with shuffle in it and continues to shuffle.”
How then can partners/friends/family help someone with Parkinson’s disease?
And how can people with Parkinson’s help themselves?
Oudegeest gives two examples:
I: First aid for overcoming (cognitive) disappearing acts
(no longer being able to find the right words, speaking softer and softer, smaller facial expressions, etc.)
Sabine starts talking softer without realizing it. Her partner Max informs her non-verbally. But Sabine doesn’t know what to do now.
Max talks louder to Sabine on purpose. Sabine can use this to restart her own programm.
Sabine speaks at a normal sound level.
We humans are social beings and unconsciously use our mirror neurons to mirror the behavior of others. The moment your partner / friend / family member starts talking softer, you may have the tendency to do the same. “And so a Parkinson’s patient can talk himself – with you as an unintended ally – into sleeping modus,” says Oudegeest. “It is in our nature to mirror the other person, but this doesn’t help a person with Parkinson’s. Thinking smaller means speaking smaller and speaking smaller means thinking smaller,” Oudegeest knows.
If you notice that a person with Parkinson’s is slowly dropping out, you can do the following:
- State clearly his / her name;
- Make eye contact;
- Speak clearly, in short powerful sentences;
- Indicate what someone should do instead of what goes wrong (So don’t say ‘don’t talk so softly’, but instead say ’talk louder’).
The same also works with the decreasing facial expression of someone with Parkinson’s. You may have the tendency to mirror the flat face yourself, but that isn’t helpfull. Instead, smile when your partner doesn’t. This allows a person with Parkinson’s to mirror your smile, using his or her own mirror neurons.
Do you have Parkinson’s disease and do you have trouble speaking? Then hit the CTRL-ALT-DEL button and start over. Then continue talking loudly in short, powerful sentences with a clear start and stop. Oudegeest: “If people with Parkinson’s get stuck in finding the right words, then they should avoid speaking in all sorts of complicated sentence constructions with difficult clauses. If a subordinate clause is important enough to mention, then start with a new sentence with a clear start and stop and therefore with a point. “
II. First aid for overcoming a lack of (motor) sensory integration
(not being able to get out of your chair, stumble, drop things, bump, fall, etc.)
Vera grabs next to her coffee. Sometimes she just knocks over the coffee. In any case, she is often unable to grab the cup in one go as she used to.
Vera recalibrates her body feeling with so-called ‘flicks’, the powerful opening and closing of the hands. In this way she wakes up the conductor and now she is ready for a new, bigger start.
Vera tries again and grabs the cup of coffee with a clear grip. In the same way, she brings it to her mouth and drinks her coffee sip by sip. Let the morning begin!
If you chase two rabbits, both will escape | Kelly, 2011
If someone with Parkinson’s disease starts ‘half’, the best thing to do is to CTRL-ALT-DEL, stop the programm, choose and start over. Continuing to mess around in the wrong program will not help. A clear, ‘exaggerated’, new start will. What can help is to ‘flix’ first, where you open and close the hands with force. This makes the hands less stiff and increases your body awareness. And then you can easier tune your movements to the environment.
If you have Parkinson’s disease, you have to learn to move, talk and think consciously and clearly. There’s one problem with that, Oudegeest knows: “If you do things consciously, you can’t do double tasks.” A well-known example is that the chance of falling during a walk increases if you talk to your walking companion at the same time (e.g. Kelly, 2011).
Preventing double tasks can be an important tool for someone with Parkinson’s disease. “It is difficult enough to conduct the orchestra consciously already, so don’t expect that it will be possible to get an entire choir moving on top of that,” says Oudegeest. It is, however, possible to train specific double tasks. In the LSVT-BIG training a patient, together with the physiotherapist and occupational therapist, can start practicing with a double task of his or her choice, with the aim of training and recalibrating the basal ganglia. For example, patients can train to be able to walk and talk again at the same time.
If a double task turns out to be too difficult for the conductor, it is useful to learn how to divide actions into sub-tasks. Sometimes an action does not seem to be a double task at all, but it is nonetheless. Suppose you regularly bump into the doorpost. This may be because, for example, you actually unconsciously say to yourself “walk upstairs and do your laundry” and there is a doorpost, a bend and a staircase between you and your goal. To prevent yourself fom running into the doorpost, you can say to yourself: “walk to the door” and then “go around the bend”, etc.
For three and a half hours, I’ve been clinging to the lips of Oudegeest. I ask him how he can spare the time to explain things to me for so long. His answer is touching:
“Knowledge is there to be shared. In this sense, we should take James Parkinson – after whom the disease is named – as an example. He was – as he described in one of his books – ‘the villager’s friend and physician‘. I find James Parkinson to be very inspirational in this aspect, also for today’s doctors. As soon as I knew about LSVT-BIG, I shared my knowledge with patients on World Parkinson Day 2014 first”, Oudegeest illustrates how he tries to follow James Parkinson’s example.
Before I walk out the door, Oudegeest once again emphasises that LSVT-BIG is a Parkinson’s specific rehabilitation training course. “That makes it different from taking on sports on a regular basis, for example. That’s good for everyone,” Oudegeest knows.
According to Oudegeest, attending an LSVT-BIG rehabilitation training course can restore lost connections, improve undamaged systems and possibly even protect dopamine neurons. “It’s a form of neurorestoration. And no, the painting will never look the same again, but you can try to get as close as possible to the original. By repeating often with perseverance and dedication, the conductor can relearn.”
LSVT-BIG – the Lee Silverman Voice Treatment BIG – is a short-term, intensive rehabilitation programme – originating from the USA – in which you learn to think and move BIG. These movements often seem strange, exaggerated or too big in the beginning, although they are similar to those of people around you. The brain is being recalibrated, as it were. Willem Oudegeest, rehabilitation physician at Meander Medical Centre, brought the training to the Netherlands where it has been offered since 2015.
The training consists of four weeks of four hours of therapy per week and 30 minutes of exercises at home every day. The sessions consist of seven standard exercises in large movements (such as walking with big steps) and also focuses on one’s own questions (e.g. more readable writing if the handwriting has become too small) and getting back into the driver seat. The sessions are supervised by a physiotherapist and an occupational therapist.
About six weeks after the end of the training, you will come back, speak with a rehabilitation physiciand and see how things are. If you want to, you can then participate in a BIG for LIFE training group in your own region. (Dutch).
Yes, there is.
In a retrospective study, described in the ‘Nederlands Tijdschrift voor Revalidatiegeneeskunde’ from September 2019, Oudegeest and colleagues show (Dutch) that people with Parkinson’s took steps forward after attending the LSVT-BIG training and that this improvement still persisted 6 weeks after the study (Engel, 2019). The article describes the results of a total of 58 patients who were treated between January 2016 and the evaluation in July 2017. For all outcome measures, improvement was seen at group level, both immediately after training and six weeks afterwards. Three examples:
- In the “6 Minute Walk Test” people with Parkinson’s walked 458 meters in 6 minutes before training, 44 meters more immediately after training and six weeks after training that increased to 60 meters more.
- For the Timed Up and Go test, people first got up from their seats in 9 seconds, immediately after training in 6.8 seconds, and this effect was still the same six weeks after training.
- The biggest improvement was seen in the activities that people wanted to improve themselves. Before training patients gave these actions a 4, after training a 1.7 and six weeks after training a 1.9 (1 = not difficult to 7 = not possible).
Although it cannot be definitively concluded from this study that the training works because no control group participated, the effects are, according to the authors, so large that it is highly unlikely to just be about coincidence. Other international studies have also concluded earlier that LSVT-BIG delivers more progress than physical therapy or a shortened two-week LSVT-BIG training (McDonnell, 2018; Isaacson, 2018).
LSVT-BIG for all? Save the date!
Oudegeest no longer needs to convince me. For me, LSVT-BIG is already one of the indispensable ingredients for the red pill, a pill that everyone – who wants to be in control of their own Parkinson’s – should be able to receive at the point of diagnosis. Why isn’t the art of hitting CTRL-ALT-DEL – and starting over by thinking and moving BIG – part of our treatment yet?
“Rehabilitation medicine in the Netherlands is not yet ready to take this on on a large scale. There are of course many questions. How are we going to pull it off with all the other things we have on our plates, will the health insurance companies reimburse it?” But Oudegeest would not be Oudegeest if for him the glass wasn’t half full. He has already planned two days for LSVT-BIG trainers to come to the Netherlands: 12 and 13 June 2020. Physiotherapists and occupational therapists can register and can become a certified LSVT-BIG trainer in two days.
With this blog post I hope to contribute that they will come en masse. The director of my own concert hall already has vivid dreams of a sold out venue 🙂
McDonnell, M.N., Rischbieth, B., Schammer, T.T. (2018). Lee Silverman Voice Treatment (LSVT)-BIG to improve motor function in people with Parkinson’s disease: a systematic review and meta-analysis. Clinical Rehabilitation, 32:607-18. https://doi.org/10.1177/0269215517734385 (Closed Access)
Isaacson, S., O’Brien, A., Lazaro, J.D. (2018). The JFK BIG study: the impact of LSVT-BIG® on dual task walking and mobility in persons with Parkinson’s disease. Journal of Physical Therapy and Science, 20- 636-641. https://doi.org/10.1589/jpts.30.636 (Open Access)
Kelly, V.E., J. Eusterbrock, A.J., Shumway-Cook, A. (2012). A Review of Dual-Task Walking Deficits in People with Parkinson’s Disease: Motor and Cognitive Contributions, Mechanisms, and Clinical Implications. Parkinson’s Disease, vol. 2012, Article ID 918719, 14 pages, 2012. https://doi.org/10.1155/2012/918719 (Open Access)
Engel, M.F., De Pooter-Westra, A., Pasker-De Jong, P., Oudegeest, W.J. (2019). Een retrospectief cohortonderzoek. De eerste grote stappen met LSVT-BIG binnen de parkinsonrevalidatie in Nederland. Nederlands tijdschrift voor revalidatie geneeskunde, jaargang 41, nummer 4, 11-15. https://docs.google.com/viewer?a=v&pid=sites&srcid=ZGVmYXVsdGRvbWFpbnx3cGJ2cmF8Z3g6MTQ3NjAyNTUyMjBhNzAwZg (Dutch)