Parkinson's Disease and the Internet (for 1996 AGM)

Parkinson's Disease and the Internet (for 1996 AGM)

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Information is the most powerful tool we have in the fight against Parkinson's Disease. The Internet is one of the largest and most effective methods for sharing information and collaborating on a global and/or local basis.

It follows that the Internet must be an important part of the overall Parkinson's picture.

2. What is the Internet?

The Internet is a very big computer network made up of all the computer networks in the world connected to each other. It covers most of the planet.

People use the Internet for many things -- the three most important are:

• The World Wide Web: The Web is the most well known Internet service. Using a Web Browser you can retrieve documents from servers all around the world, there are lots of Web pages on many different subjects. You can also use a search engine to look for Web pages which contain a specific phrase.
• Electronic Mail: You can send & receive messages to other people with an Internet mail address. This is a very cheap and fast way of communicating. You can subscribe to Mailing lists to have a discussion with other people about a certain topic.
• News: Internet News is a forum for discussions for large numbers of people and messages, often many hundreds of messages in a day are read by tens of thousands of people. Generally these discussions are on some computer-related subject, although there are an increasing number of medical and social groups.

There are two main forms of Parkinson's related information on the Internet: discussion groups; and Web pages.

There are two main discussion groups (mailing lists) related to Parkinson's:

• The general PARKINSN mailing list
• The CARE list (Caregivers Are Really Essential) for carers

On these lists, everyone is equal. Carers, sufferers and professionals all interact and produce an active, thoughtful, and useful discussion. Kind of like the PDS AGM, but 5 times the size, held around the world, every day.

There are a large number of Web pages about PD -- well over 60Mb worth about Parkinson's specifically, which is a lot - more than all the publications ever produced by the PDS! These are written by many different people all around the world and they weave themselves into a "web" of material for you to explore.

There is also an IRC (Internet Chat) channel which runs once a week where people can "meet" over the network. This generally happens quite late in the evening our time because of global time differences.

4. Who is on the Internet?

Various estimates state that there are between 30 million and 60 million people on the Internet at the moment. Some people think there will be approximately 1 billion by the year 2000.

As far as Parkinson's is concerned, there are around 1,500 people from all over the world on the PARKINSN mailing list (about 25 from the UK, although it is difficult to tell). These people are generally:

• Carers
• Sufferers
• People with a professional interest (I use the term "PD Professionals")
• Friends/Relatives of the above who watch the list and copy articles to them

As more and more people join the Internet, this number will rise rapidly. Often, people don't know they have easy access to the Internet -- most people in large corporations have access, which means not only can they subscribe to the list, but they can pass information along to family & friends.

5. How do we know what is said on the Internet is true?

This is a difficult problem. There is no censorship or editorial control on the Internet, so anyone can say whatever they want. There are two ways this is handled:

• Other people on the Internet express their opinions. For example, if someone posts something that is factually incorrect, it will be corrected in a matter of hours.
• You, the reader, need to make a decision based on the information available to you. This is the same process as in any other sphere of life -- we don't believe everything on the TV, for example. The point is, you have the information to make an informed decision.

6. Are you suggesting we give everyone access?

No. Whilst this would be a nice aim, it isn't remotely practical. However, we can make sure that as many people as possible benefit from sharing information with the Global PD community:

• If PD Professionals were to join the Internet, they could collaborate and share information with their colleagues in a much more efficient manner than they can at the moment. This brings a direct benefit to the Parkinson's community as a whole.
• If the national societies like the PDS got a presence, they could work with their counterparts in other countries. For example, there is no point in someone in the US writing a pamphlet about speech therapy if we have one in the UK they can have. We are all fighting this disease together, and should share information as much as possible.
• As we publicise the Internet and the Parkinson's aspects of it, then more individual members will be prompted to gain access, and also those friends/relatives who have access at the moment will pass information on.
• An increasing number of libraries, schools, and universities are providing access for people as part of their overall educational and social mission. Universal access to the Internet could be part of some of the major Political Parties' General Election manifestos.
• There are more and more "Internet Cafés" which allow you to "surf" the Internet for the price of an (expensive) cup of coffee.
• I am producing "PD CD", a collection of Parkinson's information from the Internet, on a CD. This will allow people to benefit from the information on the Internet without having to have an Internet connection (see the end of this sheet for details)

No. Why have a national network when you can have a global one for no more effort?

• Parkinson's affects people all around the world, and we can learn a lot from other countries.
• Some of the social problems are different in other countries, but it is useful to understand the problems other countries have, and how they are handled.
• Different countries have different perspectives on the disease and how to approach it. For example, the US is very focused on surgery (they had Pallidotomies commonly available before they were even publicly discussed here), and the UK and Europe are much more active in drug treatments (Apomorphine is still unusual in America).
• In discussion groups, numbers of subscribers is paramount. There are enough people on the global PARKINSN list to ensure a lively and useful discussion. With the best will in the world, it would be difficult to start another one in Europe.

At the moment there is very little European-specific material on the Internet. I am unsure of the reason although it may be cultural, but I would like this situation to change!

8. What is Simon doing?

Work wise, I help companies make the best of the Internet; I also run my company's Internet infrastructure and overall Internet presence. This means I have a lot of equipment and expertise, but unfortunately very little time. Therefore I'd like to enable people's activity on the Internet, but avoid becoming a bottleneck.

On a Parkinson's front, I have a number of projects underway:

• A Parkinson's web site ("James") at www.nipltd.com/parkinsons/. I will be moving & re-writing this site as http://www.parkinsons.org.uk/.
• I will be launching "PD CD", a CD of all the Parkinson's information I can get from the Internet.
• When time permits, I hope to run a questionnaire on the Web so we can find out just who is out there.
• I'll host mailing lists if someone wants one.

• Filtering the Internet for items of interest to others and passing them on.
• Maintaining a vibrant web site.
• Watching the mailing lists for things which should be responded to.

9. What could you do now?

• If you have (or can get) access to the Internet, join the PARKINSN mailing list, and look at the many pages on the web.
• If you have a personal computer with a CD ROM drive, you may be interested in PD CD; ask for details.
• If you don't have access to the Internet, but know someone who does, ask them to pass things onto you.
• Talk to other people inside and outside the PDS, and help shape what the Society should do on the Internet.
• Talk to me; argue; discuss. Just don't sit on the fence.

• You can contact me via email at simon@nipltd.com.
• If you are on the Web, in July I will be launching http://www.parkinsons.org.uk/ which will contain information from the UK, a list of other sites on the web, and instructions on how to join the PARKINSN mailing list.
• You can also go to one of the many search engines and search for pages with the word "parkinsons".

PD CD is a collection of all the Parkinson's information I can find on the Internet, placed on one CD. This includes all the web pages I can find (and get permission to include), and the archives of the PARKINSN mailing list since it started in 1993.

You can use this CD in any computer with a CD player to read the information, without having to have a connection to the Internet and all the cost this entails.

Current plans are for PD CD to launch sometime in the next month; likely cost will be around £15 - I don't plan to make a profit, but I can't afford to make a loss either.

If you would like more information about PD CD, please fill out a form or drop me a line.

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