"Two heads are better than one" I have always heard. I've found that this is especially true when I started to deal with Post Polio Syndrome. Because Post Polio people are scattered far and wide networking on the Internet is a major enabling tool for us.
network - Pronunciation: 'net-"w&rk;When I looked up the word network, both of these definitions seemed relevant to what is being done on the Internet. By interconnecting our computers, we people with a common concern or a common interest can interrelate; we share our troubles, share our solutions, rejoice together. This is a resource that we modern polio survivors are blessed to have.
This Post Polio Syndrome thing has been troubling polio survivors all through history, but just recently has it been legitimized by giving this condition a label. Because there were no statistical data and case histories collected on significant numbers of polio survivors in the past, Post Polio Syndrome was not observed as a distinct category of disease. As a result, mis-diagnosis of patient symptoms often had grim results. I have been most disturbed by what has happened to my friend that was diagnosed as psychosomatic and malingering to explain exhaustion and fatigue. I later learned this mis-diagnosis is unsettlingly common.
There are two aspects of the Internet that endow power to Internet users. The first is access to information. (This is the subject of the next section; Book-up.) The other is the ability to communicate with other Internet users, which number in the hundreds of millions. There are other Post Polio Survivors out there. The task is to find and communicate with them. Those who have gone before us have shown us how.
There are a number of Netnews conferences dedicated to the interest of the disabled and some of these are specifically dedicated to polio. There is a newsgroups named:
You can subscribe to this like you would any other news group. Search the "all newsgroups" list on your news reader program for other polio related groups by searching on the word "polio". Do this on a regular basis, as newsgroups appear and disappear when there is an interest in some subject not currently covered. Try it out.
Join a polio mail list. This is a group of people interested in the subject of polio that write messages to one another or to "ALL". Each message is sent to everyone who subscribes to this service. You needn't write anything when you first sign on, but you could and you would be welcomed.
I've used and recommend the St. Johns echo server: email@example.com. Their purpose is "To supply information, and to provide support and friendship in an informal and friendly environment."
The following is shamelessly copied from Ernie Wollering
firstname.lastname@example.org - A 'Few holds barred' discussion. Some folks have flinched at the tone, occasionally. " The Polio Life list is an unmoderated, user maintained list dedicated to exploring the full range of ideas and activities of persons who have survived polio. The focus is intended to be on polio survivors as complete individuals with varied lifestyles, experiences and beliefs who belong to the broad disability community.' 'The model for the list is not a support group but rather a forum where people with a common experience or interest in polio can share experiences and insights. Topics might include (but are not limited to) medical issues, as well as recreational, intellectual, social, political, disability rights and advocacy, and literary interests of the list members."
To subscribe to polio life send an e-mail to:
In the "Subject:" field type: subscribe
Some other groups to sample are: