Posted by dorothy --Previous Message--
on 8/13/2004, 7:16 am, in reply to "Re: International Legionella Rehabilitation Survey"
67.50.199.129
Steve,
Sorry to hear you're having trouble coping. It isn't easy. I've been out of the hospitol for seven monthes and still have acute memory loss. And sometimes can't get the words out right or remember the most simple things. Last week I read a recipe and instead of spraying the cooking spray on the pan I sprayed it in the bowl.
I lost clumps of hair and have chronic fatigue, sometimes I feel like it was yesterday since I was sick.
I hope you continue to talk to your doctor about these things. They don't have a lot going for them on LD.
I finally steered him to this sight to read all the things that I have. I'm only the second case he has ever seen.
: Please send any details of survey to me. I
: would like to take part. I am recovering from
: nearly dying of it last year and am left with
: slight brain injury from being hypoxic. I
: also have a permanent pain in the right side
: of my head. I would wlcome news from anyone
: on how to cope.
: --Previous Message--
:
:
: ================================================
: International Legionella Rehabilitation
: Survey
:
:
: ================================================
: There is a very little literature or
: information
: on the subject of techniques for surviving
: and coping with Legionnaires disease and even
: less money to fund it.
: IF there is sufficient interest, I propose to
: conduct an international survey to discover
: more information about surviving this
: dreadful disease.
: I will post the results for everyone in the
: group now and future members which will
: hopefully improve your quality of life.
: Presently, Doctors all over the world don't
: have
: much data to make recommendations for their
: patients, hopefully this survey will change
: that
: situation.
: I am still formulating my ideas, so feel free
: to
: comments, express your needs or other
: requirements, etc. No real names will appear
: in
: the results, and it goes with saying all
: information will remain confidential.
: Only LD survivors know the real truth and
: have the experience. I am hoping this survey
: will discover useful hints and tips from
: various parts of the world that can be shared
: for the benefit of everyone.
: Of course, if nobody participates there will
: be
: no results. I am an engineer by trade, so I
: will buy the software, math is no problem,
: however once I have assessed the response I
: may try to encourage a university or other
: institute to help, which MAY require that
: institute reviewing copies of your medical
: records (sent at your own expense).
: Since there is no money (except mine) and my
: spare time, the survey will be emailed. It
: will take time to compile, conduct and
: report, so please don't expect results
: overnight.
: The survey will probably comprise a simple
: questionnaire asking basic questions about
: health
: before and after, medications, exercise,
: diet, etc.
: Since this is a low cost survey, I can't
: accept
: a qualified acceptance; by that I mean a
: person
: that wants to do bits of the survey.
: Qualified
: acceptances would be classed as No, I simply
: dont have the resources to handle too many
: variables.
: Please send general questions to the group
: or my private email address: deepcastle (at)
: hotmail.com
: Please, Please Please use the title: :
: International Legionella Rehabilitation
: Survey (ILRS)
: Tell your doctors, tell your consultants,
: tell anyone that will listen 
: I encourage you to participate - Hoping for
: overwhelming response.
: Regards,
: John Herbert
: PS: Dont lose this chance to make a
: difference.
:
: :
: