Web resources for Parkinson's disease

Dr Keith Barnard recommends websites relating to this week's Clinical Review.

Genetic developments
This article is not very long, but it is very complicated. I admit I did not understand half of it. However, the final paragraph, 'Popular press v scientific press' addresses the important issue of how progress in the genetic understanding of a disease is portrayed to the wider public. There is a common misconception that once a gene is discovered that is associated with a specific disease, a cure is just around the corner.

This short passage discusses how a gene 'breakthrough' in Parkinson's disease was first welcomed in the media, and then denounced by it when they realised no miracle was forthcoming.

We need to know what our patients are thinking, and this helps us understand some of their hopes.

And if you like some pictures with your text, there is also a very good colour image of a Lewy body.

Why go there: informative.
Downside: a complex introduction.
Information from: Davidson College, North Carolina.
Address: Please click here.

Desperate measures
I was going to leave herbal medicine alone this time, but I was surprised to find how many claims there are that herbal medicine can treat Parkinson's disease effectively.

One particular product, called 'Parkinson's Support', claims to have a 95 per cent success rate, 'giving rapid results that help speech issues, walking and the performance of daily tasks'. You have to take it for three months to become 'balanced', whatever that means.

Basically this is an extract of rhododendron. There is much enthusiastic and apparently reasoned argument as to why this works.

I have a close friend who is suffering the indignities and frustrations of Parkinson's disease, despite the latest pharmaceutical and physiotherapy treatments.

Sometimes he probably feels desperate enough to try anything, including this. I think he might as well go and chew on an azalea in the lovely garden he can no longer tend.

Why go there: it all sounds very plausible.
Downside: as I said, it all sounds very plausible.
Information from: Traditional Tibetan Healing.
Address: www.tibetanherbs.com/parkinsonssupport.html.

Commissioning guide
I make no apology for giving the Parkinson's Disease Society a second mention with this offering. This 30-page PDF, called 'Moving and Shaping', is a guide to commissioning integrated services for people with Parkinson's disease.

It discusses the key requirements of services for patients and how proper commissioning of services can make an impact to care.There is no ideal model, however there are some excellent suggestions based on experience and even cost-saving hints.

One particularly impressive example is how a specialist Parkinson's disease nurse saved a trust the equivalent of £100,000 in a year.

If you are concerned about Parkinson's disease provision in your area, print this out, read it and start planning.

Why go there: this could revolutionise your Parkinson's disease provision.
Downside: it is a long document.
Information from: Parkinson's Disease Society.
Address: www.parkinsons.org.uk/PDF/Moving_ shaping_complete.pdf.

Dr Barnard is a former GP in Fareham, Hampshire.

Website of the week

I liked everything about these pages; they are head and shoulders above many charity sites. There is a clean, professional look, it is easy to navigate, and the content offers everything that Parkinson's disease patients and their carers would expect to find.

The key message that comes across is the availability of support for patients and carers, including a DVD, Being There, which aims to answer the questions and concerns of newly diagnosed patients and includes interviews with patients, carers and expert healthcare professionals. And it is free.

The area of the site for professionals is equally impressive. In addition to the usual page with external links, there is a host of offerings from the society.

Why go there: probably the best Parkinson's disease site available.
Downside: none.
Information from: Parkinson's Disease Society.
Address: www.parkinsons.org.uk/default.aspx.

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