Fwd: Suggestions on how to get involved in the group discussions

[Guest guest]

Thanks Courage, I always admired how Dad managed to bear it all. When

he died, though it was so painful to me I felt it was such a release

for him to not have to suffer without his first family anymore, I felt

like I was letting him go to them. It was strange how suddenly the 45

odd years he was without them suddenly didnt matter anymore, he was

with them. Now I cry for him, when I think what he went through. Its

the ones who are left behind that are left with the grief and you know

maybe it is so nice " beyond " that we dont even need to be grieving. If

only we knew hey?

Love to you all, Ilse

Begin forwarded message:

>

> Date: Fri Sep 19, 2003 2:21:56 AM Australia/Melbourne

> To: <LBDcaregivers >

> Subject: Re: Suggestions on how to get involved in the

> group discussions

> Reply-To: LBDcaregivers

>

> IIse, I cant' imagine what your father has gone through. It was

> almost too

> much to read let alone bear! Your family has gone through the ringer

> as

> well and I wanted to acknowledge this.

> Courage

[Guest guest]

Hi I agree with Courage, I'd just like to say that I dont often reply

to posts as others already have and usually have put it much nicer or

knowledgable than me, so I think I wont send one so as to not overcrowd

the posting. So heres to all the Happy Birthdays I've missed out on

also. I still feel like I dont know everyone here and that I am

intruding to reply to posts who I dont know who they are, but slowly

and surely I'm getting to know who is who. I felt like the comments I

was making were being ignored so I just said so and was reassured they

were not. I understand that not every post will be replied to

everytime, so if you feel out just say so and you will get a response

soon enough. I find this site like a real release although I dont have

a family member with LBD, but schizophrenia is bad enough. I have felt

very much on my own with my feelings with everything that has been

going on over the past 20 odd years and even though I havent spilled

out all my anguish to everyone here, it has still been a crutch to have

contact with such caring people who understand much more than others

out there who dont have any idea of what it means to have to watch

someone disintegrate with their thoughts.

Everyone new will have something to offer the " oldies " no matter how

small, so please share your stories and griefs and your humour, because

like my Dad used to always say if you lose your sense of humour you

have lost everything. Dad lost his first wife and three boys to

suicide, then he had to watch his next two sons " go mad " and his second

wife (Mum) die of cancer, so if he could keep going, then there must

have been something in his attitude that worked.

Ilse

Begin forwarded message:

>

> Date: Thu Sep 18, 2003 2:35:39 PM Australia/Melbourne

> To: " LBDcaregivers " <LBDcaregivers >

> Subject: Suggestions on how to get involved in the

> group discussions

> Reply-To: LBDcaregivers

>

> Hi All,

>

> I've been giving some thought to those of you who are feeling left out

> of the group or perhaps unsure about joining in the discussions.

> Having said this, I thought I would share how I got into the fray.

>

> 1. Ask tons of questions. When I joined in April (I think!) I jumped

> right in and didn't read anything posted beforehand so naturally I had

> tons of questions. When I learned about the papers that were posted I

> read them and asked tons of questions about those too. Asking

> questions is a great way to gain knowledge and to meet others on this

> list who have LO's who share the same symptoms/meds.

>

> 2. Introduce topics of interest to you. Please, please take the ball

> and run with it. We are all here for the same purpose - to learn and

> to support.

>

> 3. Just dive in. We are all people here so please don't be shy!

> Even if you don't get a big response keep at it. We all respond to

> posts that are of interest to us and there are over 400+ of us now.

>

> 4. Your posts don't have to be LBD specific. Sharing a dementia

> joke, any kind of joke or something funny that your LO's have done is

> a great release for me and I know that others feel the same way.

> Sharing what's happening to you is equally important. As caregivers,

> we are so concerned about our LO's that we forget about ourselves. I

> discuss tons of stuff that is not LBD related...my latest offering

> being my rear end!

>

> 5. Share information/research/studies/papers/Doctor's contact/Senior

> Center/Memory Clinic information. There may be someone out there who

> needs this info or is looking for a great place to bring their LO for

> care. Post about your experiences with these places - I like hearing

> about what's out there in the world for people like us dealing with

> this disease.

>

> 6. Take the plunge and post. You don't have to use your/LO's real

> name if you want more privacy. Don't let your shyness stop you from

> getting the support you need and deserve.

>

> OK, that's it for me. I'm sure there are tons of other ways to join

> the discussion but essentially I'd like to invite everyone - all 400+

> of you - to join and let your voices be heard.

> Thanks,

> Courage

>

>

> Please follow this link to learn more about Lewy Body Dementia

> http://www.lewybodydisease.org

>

>

>