Posture and Parkinson’s: ask the expert
Many people experience changes in their posture during the course of Parkinson’s. For some, changes may be subtle, such as developing a slight stoop, but for others they become pronounced, forcing them into extremely painful positions.
Even subtle changes in posture can cause discomfort, make it harder to walk, and affect balance. For those who develop more severe postural problems, the impact on everyday life can be profound, causing breathing difficulties, pain that most commonly affects the arms, legs, joints and back, falls and severe difficulties with walking and mobility.
What's it like to live with postural problems?
People affected by Parkinson’s share their experiences of changing posture and how this affects day-to-day life.
Our expert: Professor Bettina Debu
Bettina is a Professor at the University Grenoble Alpes in France. She trained in both neuroscience and physical education and her research interests are focused on postural and movement control. She is a leading expert in posture and gait in Parkinson’s so we’re delighted to have her with us to explain what we know so far about the postural changes in Parkinson’s and what questions still need to be answered.
What postural problems can affect people with Parkinson’s?
It’s very common for people with Parkinson’s to experience changes in posture that may not be visible at first but will affect balance as the condition progresses.
We’re unaware of it but we are constantly making tiny, unconscious adjustments to our posture to keep ourselves balanced and our centre of gravity in the right place. This control of our posture significantly depends upon the brainstem, a part of the brain that can be affected in the later stages of Parkinson’s. When the brainstem is no longer able to do this automatically, people have to start to control their posture and balance consciously. So often people with Parkinson’s may find they actually need to concentrate on these things.
People with Parkinson’s can also experience more serious postural problems that cause visible physical deformities. The two most common issues are:
- Camptocormia — also known as ‘bent spine syndrome’ which is when people become very severely bent forward.
- Pisa syndrome — named after the famous leaning tower, in which people lean over to one side.
With both, the problems are present when upright and are eased or can even completely disappear when lying down.
It’s not clear exactly how common these are in Parkinson’s but the impact on quality of life can be profound. These postural deformities can be extremely painful and can interfere with simple daily activities. For those with camptocormia as they are so bent over it is difficult for them to look ahead when they’re walking and the effort involved in doing so is very tiring. People with these severe postural changes can also often feel very isolated and stigmatised.
Why do some people develop severe postural problems?
The reasons why some people experience severe postural problems in Parkinson’s are very poorly understood. People who have a history of back problems or injuries do seem to be at higher risk but other than that it is very difficult to predict who may be affected.
In some cases, taking certain medications including antipsychotics or anti-Parkinson’s medications, or surgical treatments such as deep brain stimulation, can trigger the sudden appearance, or worsening, of postural problems. In these cases, simply adjusting medication or the level of stimulation being delivered is often enough to reverse or ease the problems.
However, for most people the development of postural problems is gradual and there is no clear, single cause. Research suggests that there may be a number of complex and connected factors involved. These may involve:
Changes in muscle tone with either some muscles becoming overactive other muscles becoming weakened — or a combination of both. For some, if these changes cause the muscles supporting the spine and trunk to become imbalanced it may lead to the emergence of severe postural changes.
Interestingly, although you would probably expect people to lean towards the side of the body that is more severely affected by their Parkinson’s symptoms, studies that have looked at Pisa syndrome have found that there is no clear pattern in which way people with Parkinson’s lean.
Changes in the way the brain processes ‘proprioception’ and body schema perception. Proprioception is the sense through which we perceive the position and movement of our bodies. Body schema perception enables us to orient and adjust our vertical position based on sensory information.
Some studies suggest that Parkinson’s may interfere with how the brain processes the messages it receives from muscles and joints about the position of the body. This may result in people no longer feeling that they are leaning or bending as well as lead to changes in muscle tone.
Other researchers have suggested that Pisa syndrome may be caused by a shift in the visual perception of verticality, meaning that patients could no longer tell when an object is vertical. They would then align their body to the shifted visual vertical and feel they are standing upright. Indeed, in Pisa syndrome people quite often don’t realise they are leaning over, and it’s actually the partner who first notices the problem.
However, studies we’ve conducted suggest that these changes in the perception of what is vertical may actually be the brain adapting to people’s new position rather than causing it.
We simply do not know enough about the root causes of postural problems. With both muscular changes and brain changes, it’s very difficult to know whether they are causing the problems or are actually an effect or reaction to the original cause. Either way, it’s likely that there are a number of factors involved and that these may be different from person to person.
How are postural problems treated?
Treating postural problems is complex but there are ways to both alleviate the pain that many people experience and to try and correct the postural problems themselves.
In terms of drug treatment, there is a range of things that can help:
- Adjusting Parkinson’s medication may be helpful if the postural problems worsen when drugs start wearing off — but this doesn’t work for everyone.
- Injections of muscle relaxants (such as botox) can be used to ease tense muscles to improve posture, but finding the right muscles to target can be tricky and again it’s effectiveness can be unpredictable.
- Injections of anaesthetic drugs into the muscles can provide effective pain relief.
There is now also a growing body of evidence that deep brain stimulation (DBS) may be beneficial. A recent study which looked at cases in Germany found that if DBS was effective in 60% of camptocormia cases, and other studies have suggested it may also be beneficial for Pisa syndrome.
These findings offer additional evidence that changes in the brain may play a crucial role in causing postural changes. But it appears that surgical approaches need to be used early — within 2 years of the onset of severe postural changes — to have these benefits.
Exercise and physical therapy is a very important avenue for improving postural problems and should be undertaken as early as possible. Ideally, people with Parkinson’s should start exercising (or continue if they are already active) from the day they are diagnosed to delay or even prevent the onset of postural problems.
Although the studies conducted so far have tended to be small and short-term, they do suggest that 2–3 hours of weekly exercise can significantly improve posture and pain. It also seems that as well as doing exercises to improve general fitness, activities that really focus on balance, posture and proprioception — such as dance, tai chi and pilates — may be particularly helpful for people with postural problems. Many of these activities can be adapted so that people can do them when they are seated or even lying down.
However, the most important thing is that people continue to exercise regularly to get the most out of it, and that means that it’s vital that people try out different types of exercise and find something that they really enjoy and can stick to.
Physiotherapy can also be really helpful for providing more one-to-one tailored exercises that specifically target areas that the individual can focus on.
There is also research underway looking at whether using approaches to change the proprioceptive feedback the brain receives from the muscles and joints can ease postural problems.
One of the simplest examples of this is that when people with camptocormia wear higher heels or even just stand with their heels on a thick book for a while it can help them to stand up straighter.
Unfortunately, it seems that this simple trick only provides temporary relief — if people wear raised heels all the time, it seems to wear off — so it’s not a long-term solution but I do know that some people use this technique when they know they want to be able to be more upright and find it helpful.
What is next for postural research?
As with so many things, the key to improving and even reversing postural problems is early recognition and management.
However, diagnosing these problems early is really not happening and one of the major reasons why is that we do not have an international consensus on diagnostic criteria. I think developing a shared and agreed understanding of when and how to diagnose and quantify these issues is the most urgent priority for improving management, care and outcomes for people with Parkinson’s.
Alongside this we also need more research looking at postural problems and how they develop and change over time so that we can finally pin down the root causes of these issues. And finally, of course, we need better, larger studies to develop and assess the effectiveness of treatments and management strategies.
Special thanks to Professor Bettina Debu for her help with this blog.
This blog is not meant as health advice. You should always consult a qualified health professional or specialist before making any changes to your treatment or lifestyle.