Rapid Responses to:
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Rapid Responses: Rapid Responses published:
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Melanins or melanin-like compounds as defense-line.
- Friedrich Flachsbart (13 September 2004)
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Patients’ voices in research into Parkinson’ Disease and massage therapy
- Charlotte Paterson, Jeffery A Allen, Margaret Browning, Gillian Barlow, Paul Ewings, (15 September 2004)
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Neuropsychiatric symptoms of Parkinson's Disease get forgotten
- marion y gray (16 September 2004)
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Re: Melanins or melanin-like compounds as defense-line.
- John P Heptonstall (16 September 2004)
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Re: Neuropsychiatric symptoms of Parkinson's Disease get forgotten
- Nancy A Williams (18 December 2004)
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Friedrich Flachsbart, General Medicine Praxis 37085 Göttingen
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Dear Sir, Infection is in my patients the stepping stone, triggering Parkinson's disease. The lesson of 1918 influenza and post-infectious parkinson should not be forgotten. Parkinson's disease is an infection-response in many cases. Sincerely yours Friedrich Flachsbart Competing interests: None declared |
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Charlotte Paterson, MRC Research fellow MRC Health Services Research Collaboration, Dept of Social Medicine, University of Bristol, BS8 2PR, Jeffery A Allen, Margaret Browning, Gillian Barlow, Paul Ewings,
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Your new series on the ‘patient’s journey’ is most welcome and is likely to demonstrate a number of recurring themes. The extent to which people value non-pharmaceutical interventions, including complementary and alternative therapies is one such theme that was identified by Baker & Graham (1) and has also been identified by other people with Parkinson’s Disease (2) and by people living with other types of chronic disease (3;4.) Our recent research, funded by The Parkinson’s Disease Society as a collaborative venture between researchers and patients, explored in some depth how people with Parkinson’s Disease experienced a course of massage therapy (5). We used qualitative interviews before and after a series of eight weekly massage therapy sessions, to describe individual experiences and to investigate the extent to which standard health status questionnaires were able to capture the patient’s perspective. People with Parkinson’s Disease and their carers were actively involved in the research at several stages, and this enabled us to produce some recommendations for research teams considering running clinical trials in this area, and more generally to reflect on the difficulties of evaluating therapies in the context of a progressive chronic illness. Bringing patients voices into the BMJ (6) and into research teams (7) is a vital step if we are to evaluate the whole range of health care resources used by patients, and make those evaluations meaningful to all concerned. Reference List (1) Baker MG, Graham L. The journey: Parkinson's disease. BMJ 2004; 329:611-614. (2) Low J. Lay perspectives on the efficacy of alternative and complementary therapies: the experiences of people living with Parkinson's disease. 2001. Leicester, Division of Health Studies. De Montfort University. Ref Type: Report (3) Wallcraft J. Healing minds. A report on current research, policy and practice concerning the use of complementary and alternative therapies for a wide range of mental health problems. 1998. London, Mental Health Foundation. Ref Type: Report (4) Tallon D, Chard J, Dieppe P. Relation between agendas of the research community and the research consumer. Lancet 2000; 355(9220):2037- 2040. (5) Allen JA, Barlow G, Browning M, Ewings P, Paterson C. A pilot study to investigate how to assess the effects of therapeutic massage in people with Parkinson's Disease. 2003. Taunton, Somerset Research & Development Support Unit. www.hsrc.ac.uk/Current_research/research_programmes/research_link.htm (accessed 14.9.04) (6) Lapsley P, Groves T. The patient's journey: travelling through life with a chronic illness. A new BMJ series to deepen doctors' understanding. BMJ 2004; 329:582-583. (7) Paterson C. 'Take small steps to go a long way' consumer involvement in research into complementary and alternative therapies. Complementary Therapies in Nursing and Midwifery 2004; 10:150-161. Competing interests: None declared |
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marion y gray, consultant in old age psychiatry middlemore hospital Auckland New Zealand
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I was interested to read Baker and Graham's article on Parkinson's disease but was a little alarmed that the authors left out psychiatrists in their list of professionals who may assist the patient in managing their illness. The implication being that psychiatric symptoms are not part of the journey, although I acknowledge they do talk about depression. Unfortunately Parkinson's disease is a neuropsychiatric disorder and many people with the illness suffer from disorders of mood, cognition and perception. These can present at any stage of the illness and in some cases are worsened by medication used to treat the physical symptoms. By recognising that these problems occur commonly, we as practitioners can help patients and families understand that what is happening is part of the illness and not them going mad or failing to cope. We can also offer treatment which in many cases can transform a very difficult and distressing situation. The authors talk about being honest with people who have Parkinson's disease so don't let us as health professionals stigmatise those suffering from psychiatric symptoms whatever the cause. Competing interests: None declared |
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John P Heptonstall, Director of The Morley Acupuncture Clinic and Complementary Therapy Centre LS27 8EG
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Sir Friedrich Flachsbart's message of infection causing Parkinson's is interesting. The 'controversial' research scientist Hulda Clarke, biophysicist and cell physiologist, maintains that Parkinson's is linked (through her research) to nocardia and, if I remember correctly, strep. infective agents. She claims that Parkinsons is caused in some way by one of these bugs leaving the mouth during dental surgery travelling through the nervous system into the brain. Bearing her message in mind this past several years I have made a point of asking of Parkinson's sufferers' whether the onset followed close on the heels of dental or extensive dental work - a surprisingly large percentage said it did. I wonder if anyone could elaborate on this theory, if there is any mileage in it and if not why not? Regards John H. Competing interests: None declared |
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Nancy A Williams, retired (publishing) NA
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I was most interested to read Marion Gray's article Neuropsychiatric symptoms of Parkinson's disease get forgotten. I was diagnosed with PD aged 42 in 1987 and have frequently been surprised how little attention is given to the effect Parkinson medication can have on a patient's mental state. My mind in tandem with my limbs seems to go through the same 'ons' and 'offs', which can make the management of life quite chaotic. I was lucky to have access to a neuro-psychologist at one of the London teaching hospitals, who listened to my doubts and fears and gave me back my confidence. Now seventeen years later I'm losing control of my limbs, but my mind is holding on. Competing interests: None declared |
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