Re: new to this

[Guest guest]

Welcome to the group. At first it was a daily struggle to deal with the

disease. I read a lot of articles.

Went to an Alzheimer meeting and they discussed it a little and then read

the book 36 hour day.

All of this helped me understand. Then I joined this group and they have

helped me by all the discussions that go on.

M

>

>Reply-To: LBDcaregivers

>To: LBDcaregivers

>Subject: new to this

>Date: Sat, 24 Jan 2004 00:46:12 -0000

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>Hello. My 69 year old father has just been diagnosed with LDB. We

>have seen a decline in him for atleast 6 months but he just was

>diagnosed. It looks like we will have a long road ahead. How did

>others cope at the begining?

>

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[Guest guest]

Welcome, haleybale, and I'm sorry to hear that your father has been

diagnosed with LBD. It's hard news to swallow, and there are lots

of adjustments and questions ahead, but you've found the right place

to ask them. Everyone here has been exactly where you are, and we

understand more than most will about the emotions you'll be going

through.

Perhaps you could tell us more about your father, and what symptoms

he's showing. Is he on medicines to manage the symptoms?

My father is also 69, and while I'm still in the diagnosis process,

but am 99.44% sure it's LBD. His symptoms go back a number of

years, though the past year has shown the most decline.

For me, switching roles was a tough one, which I actually still

struggle with daily. He can no longer make good decisions by

himself, but he thinks he can, and wants to make them himself.

Emotionally, I cry frequently these days, rant and rave on here if I

need to, and am trying to make sure I don't lose myself to my Dad's

needs. It's quite easy to do, as many here will tell you, so take

good care of yourself while you're taking good care of your Dad.

Hugs to you at this tough time.

> Hello. My 69 year old father has just been diagnosed with LDB. We

> have seen a decline in him for atleast 6 months but he just was

> diagnosed. It looks like we will have a long road ahead. How did

> others cope at the begining?

[Guest guest]

---

Thank you all who have answered. My father was diagnosed about a

month ago from a doctor in their small town. My sister found a

doctor who specializes in LBD here in the Chigao area. He just went

Wednesday and the diagnosis will take 2 months. This doctor does not

believe that it is LDB but post reactions to the cerbral anyrism

that he had 8 years ago. I do not know if I believe this because all

of the things my Dad does I have now read as symptoms of LBD. The

biggest decline has been in the las 4 minths but he has difficultly

walking, shuffles along, has falls, has low bladder control, is

confused at times and very with it at other times, has brown outs

and sometimes seems as if he has just been somewhere else or talked

with soemone else evan though he has not. I guess that I now have to

wiat for two more months.

My mother will be the primary care giver and seems to be in denial.

She is really counting on this new doctors words that it will not be

LBD. What ever it is is not good. All I know about the medicines now

is that he was given one for memory and one for PArkinson's like

symptons.

Thank you all again. I am scared.

In LBDcaregivers , " jaektaylor " <jaektaylor@y...>

wrote:

> Welcome, haleybale, and I'm sorry to hear that your father has

been

> diagnosed with LBD. It's hard news to swallow, and there are lots

> of adjustments and questions ahead, but you've found the right

place

> to ask them. Everyone here has been exactly where you are, and we

> understand more than most will about the emotions you'll be going

> through.

>

> Perhaps you could tell us more about your father, and what

symptoms

> he's showing. Is he on medicines to manage the symptoms?

>

> My father is also 69, and while I'm still in the diagnosis

process,

> but am 99.44% sure it's LBD. His symptoms go back a number of

> years, though the past year has shown the most decline.

>

> For me, switching roles was a tough one, which I actually still

> struggle with daily. He can no longer make good decisions by

> himself, but he thinks he can, and wants to make them himself.

>

> Emotionally, I cry frequently these days, rant and rave on here if

I

> need to, and am trying to make sure I don't lose myself to my

Dad's

> needs. It's quite easy to do, as many here will tell you, so take

> good care of yourself while you're taking good care of your Dad.

>

> Hugs to you at this tough time.

>

>

>

> > Hello. My 69 year old father has just been diagnosed with LDB.

We

> > have seen a decline in him for atleast 6 months but he just was

> > diagnosed. It looks like we will have a long road ahead. How did

> > others cope at the begining?

[Guest guest]

Welcome Haleybale:

I'm so sorry your father was diagnosed but, as we say over and over

here, thank goodness you found this site. I'm sure it will help you

tremendously. While this disease often means different levels of

progression for almost each individual patient, in so many other ways

the LBD experience is universal.

You asked how we coped in the beginning. God knows! I have no

idea. My best advice to you is to educate yourself as much as

possible about this disease because you'll find yourself having to

explain what it is to a whole lot of people who have never heard of

it. As well, I would come to learn about medicines that have been

more successful in coping with the symptoms of this illness because

meds often have to be tweaked in order to keep them " working " .

What I also did is post here ... often. The people here are so

helpful and so willing to make as much as they can better for people

who reach out to them.

I hope you'll come to find this site as invaluable as I do.

Abby

[Guest guest]

Dear Haleybale:

Welcome to the group. I am sorry you are going through this period of

diagnosis. You are aware of the changes, the diagnosis will only confirm the

course

of treatment. It is very difficult. I am sorry your mom is on denial. We

always hope for improvement, and the nature of this disease, with the

fluctuations, makes us hope for a permanent improvement.

We are here to give you all the support we can. Please post often. What is

your dad's name? My thoughts and prayers are with you and your family.

Josie