Re: Re: Sharing a Jim observation -To Arlene

[Guest guest]

Dear Arlene -

I am very behind in reading messages, and am sorry I didn't read this from you

sooner. I just want to say " amen " to what June wrote. You have done/are doing

everything possible. Five of each of us couldn't manage all there is to do with

this disease. And LBD makes other kinds of problems - blood pressure,

infections, emotional events, you name it - worse. So we have even more to deal

with.You are doing a wonderful job handling all that's needed for your husband.

Your devotion shines through your messages, and is really inspiring.

I look forward to hearing from you again - and of course keep you and your

husband in my prayers.

Have a peaceful week-end.

Lin

June Christensen wrote:

I think your observation about them being up and down

is part of just being " normal. " Aren't we all? I can

feel great (or bad) one day, and feel the oposite the

next. Makes a difference what the weather is and all

sorts of things. So, why wouldn't they? And, they

can't tell you if they hurt or what hurts or if their

stomach is upset, etc.

However, if they truly have a UTI, I don't think the

body can fight it off. I believe that the UTIs are

part of Lewy Body, or else, which I think happened in

my husband's case, is that they pick up the infection

in the course of treatment by the doctor/hospital/

nursing home (you fill in the blank). I believe my

husband got staph infection in the urinary system

somewhere, possibly because of use of a catheter. He

would take antibiotics, it would clear up, and then he

would get it back again after a few weeks off the

antibiotics. He took macrodantin as a preventive, but

it didn't stop them. They finally admitted to me,

after I asked them, that he did have staph infection.

--- Zweibeers@... wrote:

>

>

> Jan, I don't post very often and have scores of

> unread 'digests' but I

> always read your messages when I see your name. You

> explain things so well and

> really have given a lot of insight into this

> blankety blank disease. Thanks.

> Sorry to hear about the swallowing problems.

> Similar episodes have occurred

> here and like everything else, it passed. Just

> when you think, 'oh no, now

> it's the swallowing thing (or whatever)' it

> passes. So I hope that Jim will

> be fine and that this is an isolated incident. I

> hope that the Lord will

> bless you for all that you have done for Jim.

> I have wanted to make a comment for a long time,

> just in general, about the

> up and down nature of this disease, and the up and

> down nature of so many of

> the things that we see. People post that they

> think their loved one has a

> UTI because of behavior changes or mood swings.

> What about just being

> constipated, or the barometer changing, or not

> enough liquids, or a reaction to

> some food, or just needing some more sleep. I think

> that all of these things

> precipitate ( or at least could and do at times)

> behavior changes and mood

> swings. I wonder about all of the UTI tests that

> are given and the

> antibiotics that are prescribed, some even

> prophylacticly, and whether consistent

> administering of antibiotics doesn't in and of

> itself create a problem. I wonder

> about food additives and chemical reactions going

> on, too. I guess I wonder

> if I should be feeling guilty because I never have

> my husband tested for

> UTI's. When I have thought that something weird

> was going on and insisted on

> testing, it always came back negative.

> Bottom line is that I usually attribute the constant

> changes as the lewy

> bodies moving around, affecting one thing one day

> and affecting something else

> the next.

> With my husband, since I can't understand a word he

> says 95% of the time,

> and I have to make a guess on what is going on, I

> am sort of stepping back

> from intervention and letting nature take its

> course. He is on 2mg. of

> RaZADYNE two times a day and 12.5 mg. of Seroquel

> at night, and that is it right

> now. A hospice nurse checks his heart rate, b. p.,

> listens to his lungs,

> checks out his " bowel sounds " , monitors his bowel

> movements and so I wonder if

> UTI checks are necessary. Doesn't the body fight

> off these things on its'

> own?

> I always read what Lin has to say also and I respect

> the opinion of the two

> of you. I gather that her mother is subject to

> UTI's on a regular basis

> also. I guess I just want to relieve an

> underlying anxiety that persists in

> the back of my head that maybe I am not doing enough

> or insisting more

> urgently that he be tested more often. Sorry for

> the long diatribe.

> Arlene

>

>

>

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> [Non-text portions of this message have been

> removed]

>

>

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