(No subject)

[Guest guest]

Jayn

I am one of those survivors of LBD in my life, and you too, will find a

way. In sharing the stories, of life experiences with LBD, my hope is

that others will realize they are not alone, and also gain strength in

the fact that there are people who have survived...making other's

survivors as well.

Sandie

Des Moines, IA

[Guest guest]

Hi to all in this group,

I felt compelled to post here today.

Freedom of speech is a wonderful thing. I am not one for diplomacy,

so I will say it the way i feel it. For those of you who don't know,

I joined this group in January 2003, I had never heard of LBD until

then. My Dad Ron is one of the many 'victims' of this terrible

disease, he is 73 years old, I am 32. There is an awful lot I don't

understand nor do I pretend to. I absorb every post individually but

don't usually respond, for no reason in particular. I like to read &

learn of others' experience and I appreciate each post,as this is as

much a unique disease to the sufferer of LBD as well as the

caregiver. I may not agree to some opinions, but hey, that's

okay ..right? We are all entitled to our say/thought...that's

definate. We will all have good & bad and even some ugly days....but

that's why we are all here. Let's express what we feel...let's get

it out..agree...disagreee...it doesn't matter...we are a support

group..for our Loved One's.... AND EACH OTHER. 'Melt Downs' ARE

Okay...'opinions ARE Okay. Let's just cut each other some slack

here...What do you say?????

That's my 2 cents/pence worth...and if you don't like it...hey I

don't mind.

Warmest wishes to each & every one of you.

Kind Regards

Emma :-)

In Australia where we are experiencing the very pleasant Autumn/Fall

weather.

> I wonder if anyone ever gets overwhelmed when you bring up your

emails?? I

> begin to read and realize that some are just to certain people. So

I hope I

> am not about to offend any of you by this suggestion. When it is

something

> that we all can benefit from then send to the group, if a personel

reply then

> send it to the individual.

> I am always afraid if I don't read each one I may miss something

that I would

> need to know.

> I haven't gotten to the place in the road that so many of you have

already

> been. I sometimes wonder if I get so impatient now what will it be

later? I

> know I already pray a lot but I believe that when " the beast "

really gets to

> roaring then I just might be in prayer 24/7, which wouldn't be

bad, I just

> don't know how some of you have gotten thru the awful times that

you post. I

> know for sure I won't be able to cross the bridge until I get to

it. Sooo

> I'll keep reading and crying and laughing until that time comes.

> Thank each of you for all the information that you give. I wonder

sometimes

> when I read where one has come in from work, or one has done

something with

> children, and then has to be a caregiver, how do you find the time

to post to

> us when we are having such a bad day? God knew what He was doing

when I found

> the group/

> Just wish I could be one of you who are going to the group

meeting, just know

>

> I won't. But who knows what will happen between now and Aug.?

> God bless each of you

>

> Jayn

> in S GA

>

>

>

[Guest guest]

Emma

Thank you for your reply and take on the many emotions of LBD. My

opinion, is " Very Well Put " . Thank you for stepping up to the plate,

and offering a bit of your heart to the group.

Hugs to you!!

Sandie

[Guest guest]

Jan

Yes, I receive all the emails, personally, as emails. I read so much,

and take all them in...maybe I should be the interpretor of the group.

NO, JUST KIDDING, terrible joke on my part. But, yes I do get them as

emails and read them all.

Sandie

[Guest guest]

Jayn,

I have been in a group that doesn't want " personal things " included. It

was not a very nice place. How we get to know one another and identify

with each other is not only with LBD but also with the personal things.

And I believe the group would get boring with just LBD info. My

personal info was LBD related. I could not be seperated from the

dementia when it affected my life. No, I would not be in favor of

limiting this group to what is said. You never know when what you said

to one person is exactly what several needed to hear that day.

Donna{MI}

[Guest guest]

Mine comes directly to my email, but you can go to the Yahoo! Groups site as

well.

Kath with 48 messages to go.

Re: Re: (no subject)

> In a message dated 3/29/2003 7:41:25 AM Pacific Standard Time,

jancea@...

> writes:

>

> > Do some of you

> > actually have these come to your mail box as e-mail?

>

> YO! Jan -- I thought that's where everyone got these messages. Is there

> another way?

> Joni

>

>

>

[Guest guest]

Dawna,

I was so touched by your post I had to write a quick note. Have to

get Mom fed lunch and then get ready to go to work for a few hours.

You can ramble on as much as you want. I have and I still feel like I

belong here. We all do have our days when we try to sort our feeling out by

writing them down. This I feel is part of coming to grips with all the

emotions we encounter with this ever-changing disease.

I don't know much about PD but I do know that cognitive functioning

remains until near the end of its course. Many times PD and LBD overlap.

Russ, our resident researcher may be able to give you some clues as to how to

tell when this is occurring. I am glad your mom likes her neurologist. I

can't even get my mom to go to her PCP let alone a specialist, but I am

working on it.

Got to go. Stick around....never know what you might learn here. So

glad to have you with us. I will write you later to address some other

thoughts

Love & Prayers

Betty

[Guest guest]

Betty,

Can I just copy your letter? It brought tears to my eyes. I felt as

if I was writing the letter myself. You hit so many feelings that

have been inside me for some time now that I have not been able to

bring to light here.

>Your post brought up some feelings that I

> must address. When I first joined this group about a month ago, I

had no

> idea what to expect. To be honest, for a while I felt like such an

outsider,

> isolated in my little corner of the US. My brother is eight years

older than I, so you might say I was an only child.

One brother is 6yrs older. I am in a family of 5 children 20+yrs

apart from oldest to youngest to make it worse.. ONLY girl.

> Nothing was ever constant and I learned to be very flexible and

resilient. What I did not learn was how to bond with other women.

First coming to this group, I felt uncomfortable when there was

joking and quick messages back and forth with no reference to LBD. I

was having a hard time placing people with names and mostly

felt " left out " of the conversation.

I read the posts every day when I can. And YES they come into my mail

box which my husband set up JUST for LBD emails. One weekend I didn't

check my mail and on Monday 165 emails.. oopse

I am one of the lurkers because of being scared of saying the wrong

thing or not responding with the right answers. I have had so many

ups and downs lately I don't want to feel like all I do is complain

and ramble on like an idiot.

Mom has been getting worse. I have had to explain to my Grandmother

(mom's Mom) she is 93, what LBD was and tell her about this illness

and during that time I saw two women crumble before my eyes. My

Grandmother and Mom all over again as I described this illness. The

best part (if there is one?) My Grandmother told the nurses about

Mom's illness and I supplied the Nurses at the NH w/ ALL sorts of

information on LBD.

Mom had her appointment w/ the new Neurologist. Mom LOVES him.

Guess what... she may NOT have LBD... figure that one out. She has

all the symptoms to me. The research I have looked up, read here and

all that. BUT, this new guy says she may have PD yes, but he says it

is PD PLUS... ??? and also a movement disorder?? Can this be so?

Now that is part of my ups and downs. The other is as I said Mom is

getting worse. Her hands and feet are " freezing " up more. I am

having to move them for her. When I am taking care of her they stop

and I am her hands and feet. Feeding her, bathing her, walking for

her, and etc. Mom's memory is becoming more confused. She is

looking for words more when we are talking. She is talking about one

son and changes his name half way thru the conversation and then goes

back to the correct sons name. Thank goodness I am not " crazy " ..

LOL. (as for that statement was that in good taste or not?)

Anyways.. enough rambling.. and yes, I know I can ramble.. but I feel

that I have over stayed my stay in " talking " (writting). (and

probably spelling half the words wrong too)

But I wanted to thank Betty, Joni, Sandie, Sandy, Sally, Emma, Donna,

Donna, Jayne, AND ALL the rest for being YOU...

OH yeah.. THIS is DAWNA in NH (New Hampshire) not Nursing HOME or any

of the other abbreviations you came up with

[Guest guest]

Hi Dawna in NH, - not a nursing home...LOL

YOU WROTE:> I am one of the lurkers because of being scared of

saying the wrong thing or not responding with the right answers. I

have had so many ups and downs lately I don't want to feel like all

I do is complain and ramble on like an idiot.

I hear you!! I have only joined here in January 2003. However, I

have come to the realisation (with help from others here) that there

isn't a right or wrong thing to post. I too felt a little uneasy for

the same reasons. The way I see it is what we post isn't

being 'judged' by anyone here, on the contrary, posts are read by

people who have walked this path and who are walking this path,

caring & sharing people who are a huge support network here for each

other. Rambling on " like an idiot " is part & parcel and something we

all have done at one stage or another. So please don't be " scared "

to share whatever it is you would like to say. Please let this group

be your support as you go through your " ups and downs " with your

mum/grandmother and LBD/PD plus situation. Reach out & someone will

be here for you.

Regarding your mum's possible PD plus diagnosis, there is a website

which you may or may not have come across. I started out there when

I thought my Dad had PD. It's www.braintalk.org . It is full of

wonderful insightful people. People who are the sufferers of PD.

They would be more than happy to answer any of your questions and

are an excellent resource. If you do visit there, please let me/us

know what you thought and keep me/us informed of your mum's

progression.

I took my Dad to a PD specialist just yesterday- it's a process of

elimination thing for me & my own piece of mind. He does have

Parkinsonian symptoms but doesn't have Parkinsons Disease. A couple

of little tests the specialist did with my Dad were; 1.Cogwheel

rigidity test - Doc gets 'patient' to relax there arm then Doc will

turn & move it around to see if there is any 'sticking'(cogwheel

rigidity) within the particular range of motion. 2.'patient'

reapetedly touches each fingertip with their thumb as fast as they

can , this is done on both hands. With my Dad his right side

was 'slower' than his left. Which reminds me, apparantly PD tremor

(if your mum does have tremor) is usually predominantly on one side

of the body...don't know why this is.

Anyway...time for me to stop " rambling on " ...LOL...

Dawna I hope this helps

Hugs {{{ }}} to you and your mum

Warm Regards

Emma

in Australia where nature continues to bless us with it's beautiful

weather.

[Guest guest]

Thank you Jayn. I don't know if I can add anything helpful re: destroying this

beast but it certainly won't be for lack of trying

Courage

(no subject)

Courage, about the deposits on the brain, I do not know about LBD but I do

know for AZ it is caused by amyloid deposits. My sister was diagnosed with

amyloidosis on Jan l5 and died Jan 24. During the time of research, I found

that AZ is one type of amyloidosis.

You keep going girl, you may come with an answer to this thing called LBD!!!

Jayn

in S Ga

[Guest guest]

Thanks Jayn and I tip my hat to all of you here.

Courage

(no subject)

Courage, do you think he, your prime minister will ever see your email??

Wouldn't it be nice if he did, who knows how the ball gets rolling in these

cases. You continue to shout and if one shouts long enough someone will pay

attention just to stop the noise!!

Keep up the good work

Jayn

[Guest guest]

Thanks Jayn

I talked to my brother tonight and he really believes that " the only thing wrong

with mom is that she has been alone too long and now she is surrounded by old,

sick people " and he says she is a hypochondriac (which she is) but he doesn't

know anything about LBD despite the info sent because he hasn't read it. It's

kind of like sending your baby to be taken care of by someone who hasn't a clue

about babies...

I am appreciating the break though, but I have the feeling that this weekend

when our trailer season starts, I will have mom back and crying or perhaps that

guilt will hold off until the long weekend and then it will start...oh well, it

would have happened anyway even if she was here in Toronto.

I had an uneventful afternoon today. No calls from mom. No doctors

appointments. No inspectors (both have been in in the past two weeks). The

daycare is clean. We are between board meetings and no major decisions have to

be made. I placed an order for some supplies and then went out. I cannot tell

you how long it has been since I didn't need to do SOMETHING or many somethings

in one day and didn't have the time to do it all or even half of it. But today,

it was different...and it felt weird...like I was forgetting to do something

important but couldn't figure out what it was.

Kath

(no subject)

Don't get your hopes up about the place being right! We all know it really

doesn't matter where they are, they are not going to be happy. It is a wonderful

thing for you to have him taking care of your mom a few days, we will pray she

really gets on a tear like she has done with you.

Sometimes it is the ones who are away that have all the

answers!!!!!!!!!!!!!!!!!!!!!!!!!!!

Just let them have to deal with all the issues for a few days and their point

of view changes.

Hang in

Jayn

in S GA

[Guest guest]

What are the symptoms of yeast die off? How do I get Diflucan or Flagyl? I am currently only using Nystatin, and other supplementation in addition to a GFCF diet. What would yeast die off look like, because we are seeing a rash in addition to diarrhea (once) irritability, stimming has def increased - what do you think? I m new to the group, as of today. I obviously have much to learn here.

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