Self-help for Parkinson’s disease

It may seem that people diagnosed with Parkinson’s disease are no longer in control of what happens in their body. They discover that medication can improve or even remove their symptoms. It is less clear to them what they can do to help themselves.

Some people had already explored alternative therapies before their diagnosis in an attempt to alleviate symptoms which had not yet been explained. Natalia had spent a fortune on herbal medicines from a Chinese practitioner before she discovered the cause of her symptoms.
Rafa was training for a marathon when the symptoms which led to the diagnosis of Parkinson’s disease appeared. He had up until then prided himself on being fit and active. He wanted to continue exercising but was uncertain what he should to continue to do, and what, if anything, might make things worse.

Rafa’s neurologist reassured him about the beneficial as opposed to the possible harmful effects…

Age at interview 51

Gender Male

Age at diagnosis 49

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Walking was many people’s main form of exercise. Several people mentioned that having a dog helped to motivate them to walk regularly. Ann walks for an hour in the morning and another 25 minutes in the afternoon as well as housework, gardening, shopping, yoga and swimming so she feels she is doing pretty well. Gina walks to work, and Stephen makes a point of walking to the shops. Penny on the other hand had been encouraged to exercise but found it no help.

Penny was relieved when she was told that the reason exercise was not helping her was that her…

Age at interview 53

Gender Female

Age at diagnosis 51

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Alan believes dancing is good exercise for him because of its rhythm.

Age at interview 67

Gender Male

Age at diagnosis 51

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Swimming was another form of exercise that some people enjoyed. Fred could use the local pool at a time set aside for therapeutic exercise and found that he could do things in the water that he could not do on dry land, like concentrating on his ‘heel-toe’ exercises. What he and others found they couldn’t do was swim in a straight line – they swam in circles.

David likes swimming because it is pain free and you can put in as much or as little effort as…

Age at interview 54

Gender Male

Age at diagnosis 48

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Sharon longed to be able to do the things she used to enjoy but found the swimming pool guards…

Age at interview 57

Gender Female

Age at diagnosis 49

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Several people attended a gym, but some said that they went less often than they should. Fred had bought some equipment to have in the house, but he didn’t use even this as much as he should. Steve tried aerobics but couldn’t keep up. However when he changed to Pilates he found the stretches helpful. Brian had been taught exercises in a gym but said it was difficult to do exercises alone and didn’t like the noisy music at the gym. He was now in a trial exercise programme which he hoped would make a difference.

Kevin who was diagnosed with PD 2 years ago notices the benefits that follow a good workout at…

Age at interview 58

Gender Male

Age at diagnosis 56

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Several people had tried exercise to help them relax. Angela, Karen, Gaynor and Judie had all done Tai Chi. Karen felt it helped her to concentrate her mind and to relax. Gaynor really enjoyed Tai Chi because it was ‘not strenuous, you could do it at your own pace, being all about your emotional wellbeing and being balancedAnn can enjoy a yoga class because the teacher keeps an eye on her and rescues her if she seems about to fall.

Geraldine chooses therapies which suit her particular needs. She now uses yoga to help with her…

Age at interview 60

Gender Female

Age at diagnosis 42

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Many people had used massage, chiropractic, osteopathy, reflexology, reiki, Bowen massage or healers. Ruth said that massage helped with stiffness and the effects lasted a few days. Many of these techniques produced short-term improvements particularly for painful spasm, but most people said that the results, if any, were only temporary.

Peter was introduced to Bowen Massage and if it wasnt so expensive he would have liked to have…

Age at interview 72

Gender Male

Age at diagnosis 67

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When Penny tried reiki she found it impossible to lie either on her front or her back which she believed the therapist found frustrating, though on their website they insist that they can work effectively on someone who cannot lie flat. Since then she has discovered another much more helpful relaxation technique.

Penny was introduced to a technique called Mindfulness which helps her.

Age at interview 53

Gender Female

Age at diagnosis 51

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People had mixed feelings about acupuncture. Humphrey felt that he was ‘not designed for acupuncture; for Peter ‘it didn’t make a bit of difference’. But others reported quite dramatic effects and felt they benefited from having it regularly.

Helen was surprised by what happened to the needles when she had acupuncture.

Age at interview 39

Gender Female

Age at diagnosis 33

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Angela has felt much better since she has been having regular acupuncture.

Age at interview 59

Gender Female

Age at diagnosis 55

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Tom, Geraldine and David controlled how much protein they ate just before or just after taking levodopa since this seemed to make a difference to the effectiveness of their medication’

Tom learnt from a nutritionist how regulating his protein intake could avoid interfering with the…

Age at interview 40

Gender Male

Age at diagnosis 27

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It is very difficult for people to weigh up the benefits of these treatments, very few of which are actively promoted by their doctors. Several people were concerned about the cost of each session, let alone of regular treatment. Peter had found Bowen massage a very successful way of relaxing but he didn’t believe in other alternative therapies for Parkinson’s disease. Although he believed they worked in some respects, he felt that they could not help his Parkinson’s.

Some people said that therapies like yoga, Tai Chi and massage helped them to relax and to feel as if they were doing something positive to help themselves. Relaxation meant relief from pain, spasm and feelings of stress. Many people, several of whom had noticed that their emotional state greatly affected their symptoms, noted that relaxation helped calm their tremor, helped them to sleep and made them feel generally better. Joe had tried various things and felt they did more for his mood than for his physical symptoms’ ‘I think it helped me feel I was doing something to be better, made me feel lifted a bit and of course attention to one’s body, physical attention, massage, acupuncture. Anything like that makes one feel better, makes one feel loved really.’

 

Professional help for Parkinson’s disease

Most of the ongoing care for Parkinson's disease happens in the hospital outpatient clinic. A neurologist, geriatrician or physician with special interest in Parkinson's disease...