Tips and tricks: how Parkinson’s patients can discover their own coping strategies
PD in Practice
Author: Mariella GrazianoPublished: 11 August 2016
Prep: Cook: Serves:
Mariella Graziano, president of the Association of Physiotherapists in Parkinson’s Disease Europe, has experience of managing people with Parkinson’s across all disease stages, and one of the most useful ways to coping with the condition often lies with the patients themselves, she argues
People with Parkinson’s are capable of developing their own creative ways to overcome daily difficulties. Over the years, health professionals have observed with admiration the effectiveness of these unique, self-created strategies that sometimes work where medication occasionally fails.
Health professionals are increasingly aware of the creative and effective power of people with Parkinson’s to help maintain their independence. In 2014 the European Physiotherapy Guideline for Parkinson’s Disease (Keus et al, 2014) made a recommendation to take into account the trick that patients developed to overcome specific problems, evaluate their safety and adequacy and to improve the strategy if required (1).
In a video presented by Anke H Snijders, MD and Bastiaan R Bloem, MD, (2010) a 58-year-old man with severe freezing of gait surprised health professionals when he was able to jump on his bicycle and cycle safely along the road with astounding agility – fending off his freezing in the process. When he jumped off the bicycle, his freezing of gait would resume.
Another ingenious strategy created by a 50-year-old man with Parkinson’s was bouncing a tennis ball during ‘off’ periods. During ‘off’ periods his arms shake violently.
Then, one day a friend threw an orange at him, and to his surprise he caught it and the tremors stopped. So, he experimented and started throwing a ball in the air and catching it again and again with his shaking hand. The tremor stopped during this action, but returned whenever he stopped. After a lot of practicing, he noticed that by bouncing the ball he could get up from the chair and it helped even to walk and run better.
Don’t underestimate the value of self-management
These cases are a source of inspiration for therapists to creatively apply and teach their patients appropriate tricks according to their specific needs. Patients’ discovery of movement strategies and cues for themselves supports the present approach of physiotherapy. It is also proof that we should actively encourage our patients to contribute to their own disease management.
European Physiotherapy Guideline for Parkinson’s Disease Samyra Keus et al (2014)
‘Cycling for Freezing of Gait’, Anke H Snijders, MD and Bastiaan R Bloem, MD (2010) in The New England Journal of Medicine
Physiotherapy and Parkinson’s disease
Between 2004 and 2007 Mariella Graziano, on behalf of Parkinson’s Europe, organised a series of physiotherapy workshops held across the world. The aim was to share the strategies invented by people with Parkinson’s – like the ones mentioned in this article – with professionals to encourage their own contribution to disease management.
To learn more tricks and tips to help with Parkinson’s symptoms visit Parkinson’s Europe ‘Coping strategies’ page here.
Parkinson’s Europe co-founder Lizzie Graham wins World Parkinson Coalition award
Parkinson’s Europe co-founder Lizzie Graham has won a World Parkinson Coalition (WPC) award for her contribution to the Parkinson’s community. Lizzie is one of four people set to receive the Robin Elliott Award – which is given out every three years to individuals whose efforts best embody the goals and ethos of the WPC. She will be presented with the award in a ceremony at the World Parkinson’s Congress, which will be held in Barcelona later this year. Commenting on the news of Lizzie’s award, Parkinson’s Europe President, Veronica Clark, said: “Lizzie is Lizzie, and we love her for who she is and what she has done for us all – for people with Parkinson’s past and present and, I’m sure, future.” Lizzie co-founded the European Parkinson’s Disease Association (renamed Parkinson’s Europe last year) in 1992. She has since held several roles within the organisation – including secretary general and…
Study explores predictors of cognitive impairment in Parkinson’s disease
Cognitive impairment can affect some people with Parkinson’s – and may greatly impact their quality of life. Now, researchers in China have examined the possible risk factors for cognitive impairment in those with the condition. The study analysed data from 409 people with Parkinson’s within two years of their involvement in the Parkinson’s Progression Markers Initiative (PPMI) – an international study that follows people with and without the condition over time. The participants, who were newly diagnosed and experiencing normal cognitive function at the start of the research, were studied for at least five years. Published in ‘Frontiers in Aging Neuroscience’, the results indicate that older age at onset, high blood pressure and worse baseline motor symptoms may be among factors that could contribute to an increased risk of developing cognitive impairment. The researchers cautioned that “a larger sample and much more comprehensive assessment, and prolonged follow-up, will be required”.
Could frailty be a potential risk factor for Parkinson’s disease?
Frailty can refer to a reduction in physical function, and its attributes – including a slow walking speed and weak grip – are commonly experienced by people with Parkinson’s. Until now, there has been limited insight into the link between frailty and the risk of developing the condition over time. This is what led researchers at the Huazhong University of Science and Technology in China to analyse data from a large UK study, which was gathered over a 12-year period. Published in JAMA Neurology, the analysis found that frailty may be linked to an 87% higher risk of developing the condition. Commenting on the results, the researchers said: “These findings indicate that physical frailty is a potential risk factor for [Parkinson’s], and the assessment and management of frailty might have clinical significance in the at-risk population.”