Re: Message from Raquel

[Guest guest]

writes from that perspective. I think they are in the archives.

can tell you for sure. I did print off a few of them.

June C.

>

> Subject: Message from Raquel

> To: LBDcaregivers

> Cc: " "

> Date: Thursday, May 22, 2008, 10:44 AM

> Hi friends! (I'm sending this to too because I

> haven't had luck in posting messages through this

> address.

> I'll be brief because I have to go back to work.

> I'm trying to find again a wonderful piece on " the

> world " of a person with LBD, and have had no luck. Can

> anyone help me? I want to send it to our family so they can

> better understand what's going on in their Dad, brother,

> friend's mind.

> Thank you. You are all my new friends!

> Love,

> Raquel

>

>

>

>

>

[Guest guest]

Raquel - are you referring to:

Lewy Body Disease from a Patients Point Of View

by Shirley Lay

http://www.care-givers.com/DBArticles/pages/viewarticle.php?id=730

>

> Hi friends! (I'm sending this to too because I haven't had

luck in posting messages through this address.

> I'll be brief because I have to go back to work. I'm trying to find

again a wonderful piece on " the world " of a person with LBD, and have

had no luck. Can anyone help me? I want to send it to our family so

they can better understand what's going on in their Dad, brother,

friend's mind.

> Thank you. You are all my new friends!

> Love,

> Raquel

>

>

>

>

>

[Guest guest]

If you're interested in reading 's writings - there's a

folder in the files section:

http://health.groups.yahoo.com/group/LBDcaregivers/files/

And go into the folder marked:

Writings by who has early onset Alzheimers

Also if you go to the message page:

http://health.groups.yahoo.com/group/LBDcaregivers/messages

And type in and click search - you'll find a # of

other articles by him that I've posted in the past...

>

> >

> > Subject: Message from Raquel

> > To: LBDcaregivers

> > Cc: " "

> > Date: Thursday, May 22, 2008, 10:44 AM

> > Hi friends! (I'm sending this to too because I

> > haven't had luck in posting messages through this

> > address.

> > I'll be brief because I have to go back to work.

> > I'm trying to find again a wonderful piece on " the

> > world " of a person with LBD, and have had no luck. Can

> > anyone help me? I want to send it to our family so they can

> > better understand what's going on in their Dad, brother,

> > friend's mind.

> > Thank you. You are all my new friends!

> > Love,

> > Raquel

> >

> >

> >

> >

> >

[Guest guest]

Thanks for the article, . It's wonderful. Who knows what else goes on in

the minds of our loved ones with LBD? Today has been a good day in our home,

except for a moment this morning when my beloved told me, " I am handicapped.

This illness has really changed my life " . Obviously, he doesn't realize HOW MUCH

it has changed MINE -OUR life!

Thank you also June and Ron for writing back. Everyone & nbsp;in this

group & nbsp;contributes a little to my own sanity. Reading about your experiences

-most of them soooo much like mine- has made me understand better what Sherman

is going through and what I can do to help him.

That article about entering the " world " of a LBD patient and not trying to argue

or to reason or to show the logic of any situation also helped me a lot. The

caregiver tends to forget that she/he is dealing with somebody who cannot see

things in the same normal way healthy people see them. So this morning, when my

husband was extremely worried about " the pipe that's leaking " and the need to

call a plumber to fix it right away, I was ready to deal with it, get him to

calm down and to forget the matter. All the leaks are fixed in our home now!

I'm glad I was able to post my messages succesfully. I'm such an illiterate when

it comes to computers!

Hope tomorrow is a good day for all of you!

Love,

Raquel

[Guest guest]

Raquel,

Glad to hear today was a " good day. " it is better when we can have those kind

of days.

Yup, I kept my sanity by reading what others were going through and how they

handled their situation. It all helps.

Have another good one tomorrow.

Hugs,

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

Re: Message from Raquel

Thanks for the article, . It's wonderful. Who knows what else goes on in

the minds of our loved ones with LBD? Today has been a good day in our home,

except for a moment this morning when my beloved told me, " I am handicapped.

This illness has really changed my life " . Obviously, he doesn't realize HOW MUCH

it has changed MINE -OUR life!

Thank you also June and Ron for writing back. Everyone & nbsp;in this

group & nbsp;contributes a little to my own sanity. Reading about your experiences

-most of them soooo much like mine- has made me understand better what Sherman

is going through and what I can do to help him.

That article about entering the " world " of a LBD patient and not trying to argue

or to reason or to show the logic of any situation also helped me a lot. The

caregiver tends to forget that she/he is dealing with somebody who cannot see

things in the same normal way healthy people see them. So this morning, when my

husband was extremely worried about " the pipe that's leaking " and the need to

call a plumber to fix it right away, I was ready to deal with it, get him to

calm down and to forget the matter. All the leaks are fixed in our home now!

I'm glad I was able to post my messages succesfully. I'm such an illiterate when

it comes to computers!

Hope tomorrow is a good day for all of you!

Love,

Raquel

[Guest guest]

Raquel: I am so glad to hear from you again. As i said I am not at my home

computer so I do not have your address to reply directly. If you are

reading posts you have seen mine perhaps on how things are going. I hope

things are OK for you. If you can keep up that good attitude and remember

to try to go to their world instead of dragging them back into ours, that is

wonderful for both of you. It has been very difficult and I wish I could

have learned early on some of the things that would have helped me prepare

and cope. God Bless us all. Leona

Husband Ray, 67, diagnosed PD in 2004, LBD in 2006, Nursing home May 2,

2008.

[Guest guest]

Thank you, Leona, for writing back.

And thanks to all of you who share your bad experiences with medicines -I'm

making a list to be prepared.

Several have mention Exelon with good results. It's that & nbsp;medicine

similar & nbsp;to Razadine or Namenda? Is it used instead of either one? Is it a

better choice?

Today, Saturday, my spirit was dragging when I got up. I don't know why I feel

this way particularly in the morning, when nothing has happened yet. I take my

antidepressant at night because it makes me drowsy, something I can't afford

during the day. So, I would think that with the whole night to take effect, I

should wake up with a smile on my face. Does any of you have the same feeling on

the AM hours? I'm trying to get over the sadness of this hopeless situation.

A few months ago we & nbsp;bought a condo & nbsp;apartment and have a nice

balcony/deck, and I'm planning to put a lot of flowers in pots. Also, for many

years I had a vegetable garden (when we were living in our house) and canned my

own tomatoes and froze my own summer squash, parsley and swiss chard. This year

we have the opportunity to have a community garden on the complex, and I jumped

for it! I have two 4 x 8 plots that I will start next Monday, weather

permitting. Maybe I can even get Sherman to go with me, at least to take him out

of the house -he has never been the gardening type, more into books and manual

jobs like remodeling our house, fixing our cars and every thing else around the

house. He used to help me, but I don't think he has the strength anymore. Wish

me luck with my garden! When everything is producing, I'll send you a picture.

Take care. Have a nice long weekend!

Love to all,

Raquel

[Guest guest]

Hi Raquel - to answer your question - Exelon is a cholinesterase

inhibitor (the other two is Razadyne & Aricept)... The three are the

same, but are slightly different. so if one doesn't work, try

another. Namenda is another dementia med that is used along w/ one of

the 3 - for mid to late stage.

If you go into the polls section you'll see (from those who

participated) what is used more than the other... Just interesting

info...

http://health.groups.yahoo.com/group/LBDcaregivers/polls

I'm sorry you're feeling so blue in the AMs. How about listening to

that Gene tune " GOOD MORNING, GOOD MOOOOORRNING " loudly when

you first wake up - I'm sure that'll put a smile on your face! :)

Not trying to belittle your experience at all - just trying to put a

smile on your face. Besides a medication - do you see a

therapist? - I certainly did during mom's journey - it's always nice

to vent in person to a 3rd party - someone who isn't directly

involved who can give sound advice... plus allow you to use all their

tissues...

Good luck w/ that garden! Sounds wonderful. My condo in the city has

no grass! can you believe that? And we paid a 'landscaper' to clean

up the surrounding area - 'landscaper'?? there's no grass! shoulda

called him a 'sweeper'

; loving daughter of Maureen of Boston, MA; dx'd with LBD in

2/2006 (confirmed via brain biopsy;) fell victim to rapid decline

from Risperidone; Mom fell into the 50% category of those who could

not handle antipsychotics; Was successful on Celexa, Exelon, ALA &

B1; Mom became my Guardian Angel on Sept. 30th, 2006.

>

> Thank you, Leona, for writing back.

> And thanks to all of you who share your bad experiences with

medicines -I'm making a list to be prepared.

> Several have mention Exelon with good results. It's

that & nbsp;medicine similar & nbsp;to Razadine or Namenda? Is it used

instead of either one? Is it a better choice?

> Today, Saturday, my spirit was dragging when I got up. I don't know

why I feel this way particularly in the morning, when nothing has

happened yet. I take my antidepressant at night because it makes me

drowsy, something I can't afford during the day. So, I would think

that with the whole night to take effect, I should wake up with a

smile on my face. Does any of you have the same feeling on the AM

hours? I'm trying to get over the sadness of this hopeless situation.

> A few months ago we & nbsp;bought a condo & nbsp;apartment and have a

nice balcony/deck, and I'm planning to put a lot of flowers in pots.

Also, for many years I had a vegetable garden (when we were living in

our house) and canned my own tomatoes and froze my own summer squash,

parsley and swiss chard. This year we have the opportunity to have a

community garden on the complex, and I jumped for it! I have two 4 x

8 plots that I will start next Monday, weather permitting. Maybe I

can even get Sherman to go with me, at least to take him out of the

house -he has never been the gardening type, more into books and

manual jobs like remodeling our house, fixing our cars and every

thing else around the house. He used to help me, but I don't think he

has the strength anymore. Wish me luck with my garden! When

everything is producing, I'll send you a picture.

> Take care. Have a nice long weekend!

> Love to all,

> Raquel

>

>

>

>

>

[Guest guest]

---

Hi Raquel,

I struggled with the morning blues alot through this journey,

sometimes they still come back.I have learned to stay focused more

on what I can do and try not to feel as hopeless.Its not easy

sometimes.I think your garden idea is a wonderful one.I also think

its important that sometimes through the journey, in my case Ive let

go of certain goals and sacrificed them for little everyday events

that lbd throws at us.Try to keep the garden idea, and go through

with it.Its important that we find ways to stay positive and have

things even if there small to look forward to.Boy , it toulk me alot

of time and some big losses in my life to learn that, but I do feel

Im on the right track.I hope this helps you some and I hope you all

are doing well.My very best Ron

In LBDcaregivers , Raquel Asay wrote:

>

> Thank you, Leona, for writing back.

> And thanks to all of you who share your bad experiences with

medicines -I'm making a list to be prepared.

> Several have mention Exelon with good results. It's

that & nbsp;medicine similar & nbsp;to Razadine or Namenda? Is it used

instead of either one? Is it a better choice?

> Today, Saturday, my spirit was dragging when I got up. I don't

know why I feel this way particularly in the morning, when nothing

has happened yet. I take my antidepressant at night because it makes

me drowsy, something I can't afford during the day. So, I would

think that with the whole night to take effect, I should wake up

with a smile on my face. Does any of you have the same feeling on

the AM hours? I'm trying to get over the sadness of this hopeless

situation.

> A few months ago we & nbsp;bought a condo & nbsp;apartment and have a

nice balcony/deck, and I'm planning to put a lot of flowers in pots.

Also, for many years I had a vegetable garden (when we were living

in our house) and canned my own tomatoes and froze my own summer

squash, parsley and swiss chard. This year we have the opportunity

to have a community garden on the complex, and I jumped for it! I

have two 4 x 8 plots that I will start next Monday, weather

permitting. Maybe I can even get Sherman to go with me, at least to

take him out of the house -he has never been the gardening type,

more into books and manual jobs like remodeling our house, fixing

our cars and every thing else around the house. He used to help me,

but I don't think he has the strength anymore. Wish me luck with my

garden! When everything is producing, I'll send you a picture.

> Take care. Have a nice long weekend!

> Love to all,

> Raquel

>

>

>

>

>