Improvement with rehabilitation is rarely straightforward. The process of recovery is different for everybody. It usually involves ups & downs with breakthroughs & setbacks. Some people can make big changes over a short period of time but perhaps for most, progress can feel frustratingly slow. Setbacks are usually more common than not and sometimes happen for no apparent reason. This usually does not mean the treatment is wrong, it just reflects that this is not a simple problem, but physiotherapy is one of many treatments that can make a real difference.
PATIENTS BENEFIT THE MOST FROM MULTIDISCIPLINARY TREATMENT.
Is Physio/Physical Therapy Right for you?
PHYSICAL THERAPIES (PHYSIOTHERAPY & OCCUPATIONAL THERAPY)
Written by Glenn Nielsen (Physiotherapist) and Clare Nicholson (Occupational Therapist) and Christine Smith (Speech and Language Therapist)
The diagnosis of Functional Neurological Disorder (FND) encompasses a wide range of problems, many of which can benefit from physiotherapy and occupational therapy. You may have physiotherapy or occupational therapy alone, or together as part of a rehabilitation package that can also include speech therapy, exercise therapy and psychological therapies.
Physiotherapy can be helpful for people who have symptoms that affect voluntary movement. This includes weakness, tremor, dystonia, and problems with walking and balance. The main aim of physiotherapy is to retrain movement patterns and restore normal automatic functioning. A survey of physiotherapists specialising in neurology in the UK found that most saw people with FND from time to time and a proportion saw people with this problem regularly.
Scientific evidence to support the use of physiotherapy has been limited but in the past few years a number of good quality scientific studies have been published. These show that physical rehabilitation based on an understanding of FND can result in improvement in symptoms in 60 to 70 percent of people (2-4). The physical rehabilitation described in the studies are active treatments that focus on retraining movement patterns. This can make real changes in the way the brain controls movement.
The main aim of Occupational Therapy is to help people overcome the effect of health problems and disability using practical strategies and support. Occupational therapists can help people with movement problems (in a similar way to physiotherapy), but they can also help if you have fatigue, pain, dissociative seizures, cognitive difficulties, low confidence, anxiety and low mood to name just a few. The ‘occupation’ in occupational therapy does not only refer to paid work, but also to all other daily activities that you may want to complete in your day (getting washed and dressed, meal preparation, housework, child care, leisure activities, shopping, using public transport etc). What you work on with your occupational therapist will be based on the goals that you set. Occupational therapists will work with you to identify the impact that your symptoms are having on your ability to carry out your daily activities. You will then work together to develop strategies to overcome barriers to participation, improve your abilities, independence and confidence.
Both physiotherapists and occupational therapists sometimes provide mobility equipment (such as crutches and wheelchairs), as well as other adaptive aids and environmental modifications (such as rails and ramps). Providing equipment is a complex issue. Many people with FND have the experience of being told they should not use adaptive equipment. The reason why clinicians tell people this is that it is widely believed that adaptive equipment changes the way we move in a way that could prevent or delay improvement. Also, equipment often causes secondary problems such as joint pain and muscle deconditioning. Therefore, in most cases, it is usually better to avoid unnecessary equipment use, especially early after symptoms have first started. It is a different situation if a person is in danger without equipment or if a person continues to experience disabling symptoms after they have completed treatment. In such cases, the right equipment can improve independence and quality of life. We recommend taking a common sense approach when thinking about using equipment and getting advice from a physiotherapist or occupational therapist who understands FND.
If physiotherapy and occupational therapy didn’t work for you, you are not alone. If 60 to 70 percent of people improve with physical rehabilitation, it must also be true that 30 to 40 percent of people with FND will get little or no benefit. It is difficult to know why this is the case, it reflects the complexity of the diagnosis. If this is your experience, with the support of your doctor you may find more benefit from a different type of treatment or a different clinician. You may want to give physical therapies a second (or third or fourth) chance and come back to it at a later date. Timing is important to get the most out of rehabilitation. Physical therapies are usually more effective when they start after the diagnosis of FND is made as the treatment can be more specific and it is likely to involve a degree of education regarding FND, how it relates to you and your story and how your symptoms can be helped. Also, other health conditions, such as persistent pain and fatigue can interfere with progress. In this case it may make sense to address other conditions (for example optimising pain management) before starting or as part of physical rehabilitation.
Speech therapists can offer assessment, advice and support around any difficulties you might be experiencing with either speech and swallowing. They will initially offer a comprehensive assessment of your speech / swallowing symptoms , including a self-report, observation and specific tasks. The assessment will also look at the impact that your symptoms are having on your daily life and any precipitating or maintaining factors that may be involved, including discussion of how these symptoms may fit into the broader diagnosis of FND. Therapy may be beneficial depending on the symptoms you are experiencing and their frequency. This therapy may be ‘direct’ (focusing specifically on alleviation of symptoms), or indirect (looking at education around symptoms for you and your family). Indirect therapy may also include strategies to manage symptoms while you are working on other issues e.g. in psychology. There is limited published evidence for the benefit of SLT in Functional Neurological Disorder at this time (a recent scoping exercise reported minimal published evidence), however, anecdotal evidence and patient report is very positive about the potential impact of SLT on speech and swallowing symptoms.
What You Can Do
Are you trying too hard?
As mentioned above it is common that the harder someone with FND tries to move normally, the worse their symptoms become. If you find yourself in a moment where your movement is getting worse and worse, stop, count to 5 or 10 (or take 3 deep breaths) then start again. You may find this helps. Also be kind to yourself during a bad day.
Do you have any bad habits that may make your symptoms a little worse?
For example, some people sit in funny positions that may feel comfortable but may actually affect the joints, increase stiffness or over stretch the tendons and ligaments. Improving your habitual sitting position can make a big difference, particularly when you have altered sensation, loss of range of movement (tight muscles or locked joints). Getting out of bad habits can speed up recovery with treatment.
Are you getting enough sleep?
Poor sleep and poor health tend to go hand in hand and optimising your sleep at night can have an enormous impact. Some simple tips include – minimise daytime sleeping; have a “wind down” routine in the evening and stick to a regular sleep and wake time. Your doctor can assess you for specific sleep related problems and direct you to more information.
Do you have a “boom and bust” activity pattern?
This is when you are very busy and you squeeze a lot of activity into a short period of time, only to hit a wall, leaving you “out of action” until you start to feel better. This is a common problem for people with persistent pain and or fatigue. Boom and bust activity patterns tend to result in a “negative spiral” which overtime can make you feel more fatigued or cause more pain for a given level of activity. Addressing boom and bust is an important part of rehabilitation and involves learning how to spread your activity over a week and take regular short breaks – easier said than done!
Can you increase the amount of exercise you do?
Often symptoms limit how much and the type of exercise that is possible. However, if you are able to exercise moderately it can have many benefits, such as improving strength, endurance and mood. In fact, a study has shown that regular walking exercise can improve FND – particularly in people who have more mild physical disability . It is important that exercise is started slowly and increased by only small amounts at a time to avoid complications such as excessive fatigue or pain.
Graded Goal Setting
Goal setting plays an important part in getting better and if you work with a physiotherapist or occupational therapist you will likely talk a lot about what your goals are (what you hope to achieve). However, it is also important that that you work towards goals in your own time. Grading your goals carefully is important; think of your end goal and then break down the steps that are required to achieve it. Try to master each step before you move onto the next progression. Moving too quickly towards your end goal may make your symptoms worse and can lead to frustration and disappointment.
Why patients want physio/physical therapy
FND patients have a tremendous amount to gain from properly administered physiotherapy. It is imperative, however, that FND patients receive physiotherapy tailored specifically to them. This is based off research articles and from interacting with thousands of patients diagnosed with Functional Neurological Disorder.
Many patients cannot contribute their onset of symptoms to current or past emotionally traumatic events. Because many patients become symptomatic after accidents, surgical procedures and as a result of underlying medical conditions, they often have a difficult time trusting the FND diagnosis.
It is a difficult concept for FND patients to grasp why such a strong emphasis in psychology treatments exists when mental health symptoms do not always manifest, and loss of neurological function does.
FND patients in general find they benefit the most from physiotherapy, and they are eager and willing to participate. Once many patients begin to re-learn natural movements many find their brains innately repair rather quickly.
Physiotherapy is the most beneficial resource available for those with a Functional Neurological Disorder diagnosis. Becoming ambulant again and learning techniques to remain mobile is not only advantageous for patients, but in the long run, it is the most cost efficient use of resources and most likely to keep patients’ healthcare cost to a minimum.
WHY PATIENTS NEED PHYSIOTHERAPY?
1. There is growing evidence that physiotherapy can be very effective (Gelauff et al., 2014b) (Nielsen et al., 2013)
2. Short-term and long-term successful outcomes were documented in the treatment of patients with functional movement disorders by a rehabilitative, goal-oriented program with intense physical and occupational therapy. The rapid benefit, which was sustained in most patients, suggests substantial efficacy that should be further assessed in a prospective, controlled, clinical trial. (Czarnecki…2011)
3. Physiotherapists in general are interested in treating such patients and feel physiotherapy to be an appropriate treatment. However, inadequate service structures, knowledge and support from non-physiotherapy colleagues are judged to be barriers to provision of care. (Edwards., 2012)
4. There are specific interventions and approaches that seem to work, and are amenable to study e.g. unlearning maladaptive motor programs, ignoring negative movements, focusing on complex motor programs as a whole (i.e. not focusing on a paralysed leg, for example, that might be the case for a non-specialised physiotherapist) (Nielsen et al., 2013)
5. The most successful programs appear to do this by conceptualizing the FMD as a problem with abnormally learned “motor programs” in the brain that have to be “unlearned” (Nielsen et al., 2013)
6. Most physiotherapists questioned in a study felt that they could do more to help FND patients, but felt poorly supported by neurologists and existing service structure (Edwards et al., 2012b)