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Chapter 1

My Experience

Quite early in my life I began to see the impact that Parkinson’s disease could have on someone’s life. First, with an uncle, whose movements were slow and curious to me as a child, but who always looked solemn, and later on, another very dear relative, who, on retiring from a busy and stressful job, was diagnosed with the disease. This changed his sociability, his powers of communication and his enthusiasm for life. I was already into yoga at that time and we discussed how it might help him, and so, encouraged by his wife, he began a daily regime of postures and breathing (Asana and Pranayama). This helped him to stay reasonably mobile and active despite the disease.

So when I was asked to take on a group that had been running for some years for people with Parkinson’s disease, I accepted to see what more I could do. This has become an interesting and enjoyable session with lovely caring people, so supportive of one another, and the highlight of my week. They have taught me about the disease, how its symptoms are managed, and how differently it affects people; they have shown me what can and can’t be done, and what can be achieved by focus and mental application.

Many years ago I was offered work as a yoga teacher within a psychiatric unit at my local general hospital. Having had little hands-on experience in this area as a specialism, I fell back on my basic yoga training, which fortunately was broad and based on a ‘yoga for health’ model. I stayed in this post for ten years or more, and learned much. This led me to work with a special needs group at my local college, a group of very mixed students – two were in wheelchairs, others with mental illnesses, and some with limited physical mobility after experiencing road accidents. This gave me experience beyond my official training.

My work with people with multiple sclerosis (MS) has been largely on a one-to-one basis, as each individual can be at a very different stage of the disease, from wheelchair-bound to able-bodied. I was always on the lookout for new ways that I could offer yoga to assist these students, carefully watching them to see how they responded and which approaches worked. I was thirsty for knowledge, and I still am.

I hope that this book will encourage yoga teachers to work with groups like this. Far from being limited and mundane in yoga practice, they are rewarding and inspiring, a fertile learning ground for all involved.

To some, all yoga is therapeutic. It is possible to bring about positive change using a general yoga teaching approach, adapting postures and offering a class that includes breathing and relaxation. A good, inclusive yoga teaching qualification will give a teacher adequate skills to offer this.

My message here is that Yoga Therapy training is extremely useful but would have given only some of the understanding that I have gained through practical, therapeutic experience. But do not dismiss the good that can be done with the basics, common sense, applying Ahimsa (doing no harm) and having a curious and inventive mind.

I added to my yoga teaching skills by studying further, with training in a psychophysical therapy, Postural Integration, which is akin to Rolfing and Emotional Therapy. This reinforced my belief and understanding that body and mind are one, and that working on the physical can bring about transformation in the mental and emotional fields, a belief, for me, supported by the yoga Pancha kosha model. I have developed many of my subtle energy techniques by blending these approaches together. What I knew to be effective in the body-mind model is now being proven and explored as neuroception and interoception, in the field of neuroscience. The outcomes of my work have come not from research (and I am not a medic); they have come from my hands-on experience with people, over many years.

Yoga Therapy helps us to understand the depth of the individual condition. While seeking therapy for one thing – Parkinson’s, for example – what is often revealed is another underlying issue. This may be a belief, a state of being, and we may find that this underpins everything else. A karmic pattern may be revealed. We seldom get to this in a group situation, but in one-to-one work there is the opportunity to go below the surface, if the student is ready.

It is easy to get distracted by the need within ourselves as teachers to see measurable improvements. We want to see better balance, improved stability. We want to offer the dream of this condition not getting any worse. But let us not forget the goal of yoga – peace of mind, inner stillness, or even enlightenment.

I sometimes modify these goals with a modern psychotherapeutic approach, ‘to be the best I can be, with all my faults, quirks and health conditions’ today. It is known that if we can improve breathing, relax and stay mobile, the organism is less likely to fall into a cycle of illness and added health complications.

Both Parkinson’s and MS are not going to go away for those with the diagnosis. It may incur fear, anger and despair, and these may continue as the disease process takes away the person’s normality. Many come to a place of acceptance – not that other emotions stop (we never stop feeling), but adjustments are made, and building from a new place, a new way of being begins. What does not change is the inner being, and maintaining this connection is what yoga does best.

What is Parkinson’s disease?

One person in every 500 has Parkinson’s. That’s about 127,000 people in the UK.

Most people who get Parkinson’s are aged 50 or over but younger people can get it too. (Parkinson’s UK)

Parkinson’s is a progressive neurological condition, where the cells that produce the chemical dopamine cease to function and die. Dopamine enables nerve messages to be transmitted from the brain to the muscle. Interruption in its flow means that the message doesn’t get through properly, causing dysfunction in muscle control and mobility, which sometimes results in the classic Parkinson’s symptoms – tremors, a shuffling walk and lack of facial expression. Other symptoms are rigidity, muscle spasm and ‘freezing’. People also find that they may suffer from tiredness, pain, depression and constipation. As well as the physical problems caused by motor activity, the area of the brain responsible for motor activity is also responsible for mood, so people with Parkinson’s are susceptible to anxiety and may also be depressed. The disease process and the speed of its progression are different for everyone, but these should all be taken into account when planning a yoga programme.

Treatment of Parkinson’s disease

There is currently no cure for Parkinson’s, and the cause is not known. It is managed by a drug regime, occasionally surgery and other supportive therapies. Drug treatments aim to increase the level of dopamine that reaches the brain, and to stimulate the parts of the brain where dopamine works. There are many different drugs prescribed for Parkinson’s, and it is helpful for a yoga therapist to understand how these work, and how they may affect behaviour, muscle control and energy levels.

Levodopa is the main drug treatment for Parkinson’s, and in the UK these are Madopar and Sinemet® (it may be prescribed under different names in different countries); the body changes this drug into dopamine. It is important to consider the side effects when looking to plan Yoga Therapy, as the following may be reported:

•confusion

•hallucinations and delusions

•mood swings

•psychological changes

•sleepiness, fainting or dizziness.

If students report these, advise them to refer to their specialist nurse.

There are many other drugs that supplement the activity of dopamine, either damping down the motor responses that cause tremors, by boosting the uptake of dopamine, or slowly releasing dopamine into the system. Deep brain stimulation is being used more frequently for those for whom dyskinesis (severe trembling) is a growing problem during their ‘off’ times. According to Parkinson’s UK:

In deep brain stimulation signals from an electrical implant in the brain help reduce Parkinson’s symptoms, such as tremor and stiffness. Deep brain stimulation is not a cure, but it can give some people better control of their symptoms. It may help to reduce some movement symptoms of Parkinson’s, such as slowness of movement, stiffness and tremor. It may also mean that someone has to take less medication, which can reduce the risk of side effects, such as involuntary movements (dyskinesia).

In providing Yoga Therapy, the pacing of the drug regime needs to be considered, as this will affect the optimal time when the student will be active. Parkinson’s has daily on/off phases: the terms ‘on/off’ or ‘motor fluctuations’ refer to the period when people can no longer rely on the smooth and even symptom control that their drugs once gave them. Each individual will need to consider this, along with the timing of yoga practice.

Exercise is essential for both quality of life and for maintaining mobility for as long as possible. Swimming, walking, stretching and other physical activities are encouraged. In some areas Conductive Education is offered, a system of integrated education and therapy that can help any child or adult with a neurological movement problem (cerebral palsy is the most common condition treated). It is also useful for genetic disorders and for adults with Parkinson’s, MS, stroke or acquired brain injury.

Parkinson’s UK say that an exercise regime will improve the following:

•walking, sitting down, standing up and turning in bed

•keeping joints flexible and relieving the effects of rigidity

•improving or maintaining muscle strength

•balance training and preventing or managing falls

•pain relief through manual therapy

•maintaining or improving effective breathing.

We can see that yoga can help to meet many of these.

The progress of Parkinson’s disease is measured by the Hoehn and Yahr scale, a system commonly used for describing, in broad terms, how Parkinson’s symptoms progress and the relative level of disability. It was originally published in 1967 in the journal Neurology by Margaret Hoehn and Melvin Yahr, and included stages 1–5. Since then, stage 0 has been added, and stages 1.5 and 2.5 have been proposed and are widely used. The stages are as follows:

•Stage 0: No signs of disease.

•Stage 1: Symptoms on one side only (unilateral).

•Stage 1.5: Symptoms are unilateral and also involve the neck and spine.

•Stage 2: Symptoms are on both sides (bilateral), but there is no impairment of balance.

•Stage 2.5: Mild bilateral symptoms with recovery when the ‘pull’ test is given (the doctor stands behind the person and asks them to maintain their balance when pulled backwards).

•Stage 3: Balance impairment; mild to moderate disease; physically independent.

•Stage 4: Severe disability, but still able to walk or stand unassisted.

•Stage 5: Needing a wheelchair or bedridden unless assisted.

In a clinical setting, however, a more practical evaluation is used based on everyday activities. This asks questions about speech, swallowing, difficulty using utensils, handwriting, difficulty dressing, falling, ‘freezing’, walking, turning in bed, etc.

What is multiple sclerosis?

Multiple sclerosis (MS) is a condition of the central nervous system, involving the immune system. More than 100,000 people in the UK have MS. Symptoms usually start in the twenties and thirties, and it affects almost three times as many women as men. It is a lifelong condition, and the cause is not known. As yet there is no cure, but research is progressing fast.

In MS, the immune system begins to attack a substance called myelin, which protects the nerve fibres in the central nervous system. This damages the myelin and strips it off the nerve fibres, either partially or completely, leaving scars known as lesions or plaques.

This damage disrupts messages travelling along the nerve fibres – they can slow down, become distorted, or not get through at all. As well as myelin loss, there can also sometimes be damage to the actual nerve fibres. It is this nerve damage that causes the increase in disability that can occur over time.

As the central nervous system links everything the body does, many different types of symptoms can appear in MS.

There are several different types of MS. Relapsing-remitting MS is the most common and first stage of the illness. It may be, but is not always, followed some years later by secondary progressive MS, where disability gradually increases. Other types are primary progressive MS, which usually affects people from their mid-forties onwards, and does not have the relapse-remission pattern, and benign MS, where there has been an initial illness with recovery and few symptoms following, although this does not mean that it will not develop.

Treatments for MS include disease-modifying drugs that have an immunomodulating effect. These are often interferon-based and are injected. They work with the immune system in various ways, and often have flu-like side effects that may last 48 hours or so. Various drugs are prescribed to help with symptoms such as tremor, sleep difficulties and tiredness.

Physiotherapy, massage and modifications to diet are also recommended, as well as Yoga Therapy.

MS symptoms include numbness, tingling, loss of muscle strength, paralysis, difficulty balancing and walking, and difficulties with both coordination and dexterity. Spasm and stiffness may be present, and there may also be bladder/bowel problems, speech difficulties and overall mental and physical tension.

There are often accompanying emotional disturbances, depression, anxiety, mood swings frustration and fears. Tiredness is a debilitating problem with this disease.

Comparing Parkinson’s disease and multiple sclerosis

We can see that both Parkinson’s and MS are neurological diseases but have very different causes. Although they affect different age groups, there are similarities in the needs of both groups that can be met through yoga practice. This book may therefore be useful for working with both of these groups as:

•both have mobility and movement issues

•both have spasm, stiffness and balance problems

•in both cases there is disruption to daily life and possible depressive conditions, tiredness, loss of confidence and quality of life.

Cautionary note

As I am not a medical doctor, nor a research scientist, my experience is from directly working with people, and so the practices and methods suggested in this book are to be used alongside orthodox medical treatment, and they should not be used instead of orthodox treatment.

It is always best to refer a student to their specialist nurse or doctor if is there is any doubt as to whether a particular yoga practice would be contraindicated.

How yoga makes a difference

A small survey of our practising groups has shown that for MS, in a range of practices covering joint mobilising, strengthening, stretching, balancing, relaxation, breathing and visualisation, the most helpful, and the one that the students themselves perceived as producing a noticeable beneficial effect, was relaxation, followed by strengthening and breathing practices. All of the students reported feeling energised and well after the sessions. We asked if partners were able to note any differences. Those that reported back commonly said that their partner was calmer, steadier, moving better and sleeping well after yoga practice.

A similar survey of our Parkinson’s students over the same practices – joint mobilising, strengthening, stretching, balancing, breathing relaxation and visualisation – found that stretching and joint mobilising were the practices that they enjoyed and found the most useful. Students reported feeling more mobile and energised after class. Although it was hard for them to identify any specific improvements in their condition, they all reported feeling better and generally well, and noticed a difference if they did not attend class. It clearly helped them to maintain useful movement and to stay active, and their partners noticed that they moved better and were calmer after yoga.

Research into the effects of yoga for Parkinson’s disease and multiple sclerosis

There have been various studies looking into the impact of yoga on Parkinson’s and MS, and I present below some of the more relevant ones in this section.

Parkinson’s-related research

Kaitlyn Roland completed her PhD research at the University of British Columbia (2012), which measured Parkinson’s disease-related changes to daily muscle activity and the consequences for physical function and frailty. She found that yoga not only improved psychological wellbeing, but also had an effect on the mobility problems experienced by many patients.

Boulgarides et al. (2008) researched into the effect of an adaptive yoga programme on mobility, function and outlook in individuals with Parkinson’s disease. The background for the research was:

…that Yoga has been found to be effective in addressing problems of strength, flexibility, balance, gait, anxiety, depression, and concentration. These problems are all present to varying degrees in individuals with Parkinson’s Disease (PD). Different forms of exercise and therapy have been found to improve the symptoms related to PD, but no experimental studies have been found exploring the effects of a Yoga program on those symptoms.

Their conclusion was that changes in measures of strength, ROM (range of movement), mobility, gait, balance and psychological health indicate a positive effect of yoga for those with Parkinson’s, supporting further study using randomised controlled research design with more subjects.

Multiple sclerosis-related research

The research results of yoga for MS are much more mixed, although several studies have shown that yoga practice relieves fatigue. In early 2008, The Expanding Light yoga school co-sponsored a research study of Ananda yoga that included energisation exercises, a combination of deep breathing, isometric contraction and mental focus to increase body awareness and neuromuscular coordination. The purpose of the study was to investigate the effects of this yoga routine on various aspects of day-to-day functioning and quality of life in individuals with MS. The results of the study showed encouraging positive results on many fronts, including improvements in balance, strength, levels of anxiety and depression, feeling of vitality, concentration and a sense of wellbeing.

The Rutgers School of Health Related Professions recently conducted a pilot trial (see Fogerite et al. 2014). Those who participated were better able to walk for short distances and longer periods of time, had better balance while reaching backwards, fine motor coordination, and were better able to go from sitting to standing. Their quality of life also improved in perceived mental health, concentration, bladder control, walking and vision, with a decrease in pain and fatigue.

Almost all of the research projects recommend further research with larger groups for a more accurate picture.