Path: utzoo!utgpu!news-server.csri.toronto.edu!cs.utexas.edu!yale!bunker!hcap!hnews!157!3!Butch.Walker From: Butch.Walker@f3.n157.z1.fidonet.org (Butch Walker) Newsgroups: misc.handicap Subject: Who is this Guy? Message-ID: <12976@bunker.UUCP> Date: 20 Jul 90 20:19:35 GMT Sender: wtm@bunker.UUCP Reply-To: Butch.Walker@f3.n157.z1.fidonet.org Distribution: misc Organization: FidoNet node 1:157/3 - Nerd's Nook, Rocky River OH Lines: 99 Approved: wtm@bunker.UUCP Index Number: 9366 [This is from the Silent Talk Conference] I've been involved in FidoNet and Echomail so long I sometimes forget some folks don't have any clue as to who I am, or what my story is, or why I post messages about Electronic Support Groups. Some may think I'm just some relatively new Sysop "Do Gooder" and blow my posts off as not being relevant. So, let's start from square one. I started in FidoNet in Concord California (that's 31 miles due east of San Francisco) in late 1985. I came in as 10/625 & 10/626. I was one of the few to be running two nodes, two lines, and multitasking two copies of Fido 10#, then later 11#. In the spring on 1986 I became the third system outside of Dallas to run echomail, and about the same time founded Net 161, which has since spun off four other nets in Northern California. In the fall of 1986 I hosted a meeting in Chicago to form the FidoNet backbone, and from early 1987 until late 1987 besides acting as the first REC for region 10 and the first NEC ever, acted as the First official ZEC (Jon Sabol holding the unoffical position prior to my taking it over). During that time with the help of Bob Hartman, Ray Gwinn and a host of others we created, tweaked, fine tuned, and debugged what all of you now take for granted. On January 24th, 1989 my wife (then 29 years old) suffered a massive intracranial hemorrhage when an arteriovenous malformation located in her corpus callosum cut loose. We almost lost her. For ten days she laid in a combination of ICU's, NICU's, and a neurosurgery floor waiting for brain surgery. For just under a month she was unable to sit upright without being strapped into position, and had a wide variety of cognitive deficits. Before she was even transferred post surgery from UCSF to John Muir for Rehab I started the THI_CVA echomail conference (commonly known as the Brain Injury Conference). Thanks to folks I met via that conference the next days, weeks, months and now a year and a half proved a bit easier to get through. Ellen still has cognitive deficits and will have until the day she dies. I have spent 18 months as a care giver and will continue in that capacity as long as either of us is still around. I am as you might now realize a great believer in the impact and importance of Electronic Support Groups. I have seen in the past 18 months the positive change that takes place when someone stumbles across one of the groups and finds out that they are not alone, that others have gone before, and that they can improve and look forward to the years ahead instead of fearing them. The US Government estimates (according to the press releases that accompanied the most recent law that was passed) that 43 million Americans suffer from a physical or mental disability. First I detest the word disability, and secondly I'd like to know what they are smoking. It is estimated (and probably on the low side) that just under 2 million in the US suffer from Alzheimer's alone. That doesn't even include the other forms of dementia. It is also estimated that over 1.5 million in the US suffer a Traumatic Head Injury each year. Almost 2% of our population walks around with a bomb in their head (an AVM, or an Anuerysm) and close to 40% of those will hemorrhage during those individuals lifetimes. How many SCI's each year? In one Cleveland hospital alone over one weekend there were 5! What is important to me in those numbers are the astounding number of us that face those problems daily with no contact with other individuals facing the same battles. Electronic Support Groups represent a means by which those individuals can communicate with each other lending help, support, comfort, hope and information without leaving the comfort of their homes, without exposing themselves to the outside world until their self confidence and self esteem can return to what for them are comfortable levels. In various conferences over the last year or so I have been told that the people that need help have found the conferences or that an adequate means of distributing the conferences exists. I say to you that feel that way, please send what you are smoking here, because you are so far out of touch with reality it isn't close to being funny. In a recent radio interview I said that the odds are better of winning the big jackpot in the state lottery than for an impaired individual to find one of the support groups. I said it then and I say it now. There are so few BBSes internationally carrying the support group conferences that I for one am ashamed. When I speak to groups, without fail I am asked if there is a system in some city that a friend or loved one can log onto to access one of the support groups. Almost everytime I have to hang my head and say NO! Frankly it makes me sick to have to give them the bad news. So, you will continue to see posts from me announcing new support group conferences, or posting listings of the conferences, or asking for a system in a given area. If you don't like it, tough because there are millions out there that aren't as lucky as you. They haven't found the help yet, and until they at least know it exists AND can get local access to the help, I'm not stopping! -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!157!3!Butch.Walker Internet: Butch.Walker@f3.n157.z1.fidonet.org