Posted by dorothy --Previous Message--
on 6/17/2004, 6:49 am, in reply to "Re: International Legionella Rehabilitation Survey"
67.50.199.129
Thea- I'm so sorry for the pain I know this is causing you and your family. I had legionnaires six monthes ago. I spent eight days on the ventilator and two more weeks in the ICU recovering. The memory loss was devasting. I did not know who anyone was for about the first six days.
He can feel you there and it helps him to have you there.
: Thea- I caught LD about a year and a half ago.
: My memory problems started in the hospital as
: your husbands have and have continued since.
: At times, I have forgotton things from 30-60
: days prior to my hospitization. I still
: don't remember things as I used to and am
: often surprised when friends or family tell
: remind me of things. Currently, short term
: memory loss is still a problem and at times
: very frustrating. It wasn't until recently
: that I found that the long term effects are
: almost worse then the short term. I left the
: hospital thinking I would be back to normal
: in a couple of months. I would give anything
: now to feel like I did before I got LD. Stay
: supportive, read all you can find, and take
: care of yourself. We do improve but it sure
: is slower and longer lasting than anything I
: was prepared for.
: --Previous Message--
: My husband is currently in the hospital, on a
: ventilator, with the diagnosis of
: Legionnaires. This is day 14 that he is in
: ICU and it is completely overwhelming and
: distressing to me, to our family. We know so
: little about the disease and I'm searching on
: the internet as much as I can when not at his
: side at the hospital. He is a young 56 year
: old, was very healthy and athletic with no
: pre-existing condition before this struck
: him...which is still a mystery as to how and
: where. As he's been slipping in and out of
: awareness these past 2 weeks he has seemed to
: know who I was and whenever I mentioned our 5
: year daughter I could see emotion on his face
: and he would often have some tears. I'm
: particularly distressed today because,
: although he was more alert and aware than
: he's been since ICU, he did not know who I
: was or who our daughter is when I showed him
: photos....shook his head no when I asked him
: if he knew who she was. Has anyone out there
: had any experience with a legionnaires family
: member, or themselves, that completely
: forgets who their family members are? I came
: across this site in a google search and
: thought I could find some help in coping as I
: endure this dreadful situation. Kindly, Thea
: --Previous Message--
: : Yes to the confusion and short term memory
: loss. And even some long term memory loss.
: I had LD, ARDS and stroke while on
: ventilator. 4 weeks on vent in coma. It's
: been 2 and a half years and I still have
: problems with both confusion and memory loss.
: Terry
: Previous Message--
: I have a question about the effects of LD on
: short term memory & confusion. My
: husband is having some problems with both.
: The pnuemonia caused ARDS (acute respiratory
: distress syndrome) & I have read short
: term memory & confusion can result from
: ARDS & persist for awhile. Was wondering
: if anyone else experienced this problems
: after legionairres disease.
: --Previous Message--
: : I have specific questions about the affects
: of LD on vision and/or eye problems. I did
: suffer a stroke while on ventilator, and the
: stroke could have caused the vision problems,
: but my question concerns whether LD could
: have also contributed or could have caused
: lasting problems with vision and
: weakeness/tiredness of eyes.
: Thank you,
: Terry
: --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.
:
: :
: : :
: