Posted by Sylvia Copeland --Previous Message--
on 7/14/2004, 4:23 am, in reply to "Re: International Legionella Rehabilitation Survey"
68.10.100.154
: : --Previous Message--
: 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.
:
: : : : :
:
I was hospitalized on June 14 2004 with pnemonia and things changed for me about 36 hours later . I was transfered to ICU stat. I can not remember a lot of the 5 days I was in there. My husband and children said that it was worst thing they had to go through. Watching me fight for my life.
\I was in the hospital for week and a half. I had to come home with oxygen 2 liters while resting and 3 during the night while sleeping.After a week and 3 days on oxygen. I returned to my pulminary doctor two weeks after being discharged and he took me off the oxygen. But I am having a problem with getting very weak if I move around more than 10 minutes.My muscles are still very weak. He told me to try to walk no more than 30 minutes a day. I have problem with my muscles just shaking all over when I try to do some things around my house.I was a very energy person
before this. I was a full time cook at a Nursing home. And now I can not stand up in my kitchen to
fix a meal for my husband and I don't see how I can go into work right now and cook for 60 people and bo my feet for 71/2 - 8 hours.