anniversary and birthday

July 16, 2004

Dear friends. I wanted you to know that yesterday I celebrated my 68 birthday

and today is Jims and my 49th wdding anniversary. Next year is the big 50 and I

hope Jim will be well enough to celebrate it with a big party. Lord willing.

Phyllis

There are 25 messages in this issue.

Topics in this digest:

1. Re: Shhhhhhhhh....from sandie

From: " cathy maryfield "

2. Courage

From: " abbybb1 "

3. Sandie and

From: " abbybb1 "

4. Josie

From: " abbybb1 "

5. Re: DLBD Patient would like to say Hello

From: " Patti "

6. Re:singing

From: " Patti "

7. Re: LBD - from Sandie and

From: " Patti "

8. Re: Patti - 'the tremor'

From: " Patti "

9. Re: Ribbon

From: " cathy maryfield "

10. RE: Ribbon

From: " cathy maryfield "

11. mum's coming for a visit

From: " "

12. Re: To Abby - Sandie and

From: " Sandie "

13. Re: Re:singing

From: " cathy maryfield "

14. Re: Re:singing

From: " cathy maryfield "

15. Re: Why I am here

From: " Patti "

16. Re: At long last...

From: ppark4915@...

17. Re: Re: Why I am here - Patti

From: " Sandie "

18. Re: Shh..from sandie/ M

From: " Sandie "

19. Re: DLBD Patient would like to say Hello

From: " Patti "

20. Re: Thank you Patti

From: " Patti "

21. Re: Thank you Patti

From: " Patti "

22. Re: Patti's Posting, Medications, Research

From: " Patti "

23. Re: Patti's Posting, Medications, Research

From: " Patti "

24. Re: Patti's Posting, Medications, Research

From: " Patti "

25. Re: Swallowing/Simmel

From: LadySmilingAtU@...

________________________________________________________________________

Message: 1

Date: Thu, 15 Jul 2004 08:28:12 -0500

From: " cathy maryfield "

Subject: Re: Shhhhhhhhh....from sandie

woo hoo!!!

You and are very lucky people.

Love always makes us smile.

M

>From: " Sandie "

>Reply-To: LBDcaregivers

>To: LBDcaregivers

>Subject: Re: Shhhhhhhhh....from sandie

>Date: Mon, 12 Jul 2004 14:46:23 GMT

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>

>hey group...

>

>i am going to use all lower case letters, sneaking in to tell

>you some news...shhhhhh, don't tell anthony that i told you, but last night

>he booked, and confirmed his travel plans...he

>will be here, yes, in des moines, (again...yippee) on

>august 28-sept. 18. i must say...shhhhhh, I am SO VERY EXCITED,

>I COULD SHOUT FROM THE ROOF TOPS OVER THIS NEWS - SMILING

>HUGE HERE IN DES MOINES,AND UNTOUCHABLE AS MY FEET HAVEN'T

>HIT THE GROUND SINCE HE GAVE ME THE NEWS.....woops, shhhhhhh

>

>wheeeeeeeeeeee!!!!!!!!!!!

>sandie

_________________________________________________________________

MSN Life Events gives you the tips and tools to handle the turning points in

your life. http://lifeevents.msn.com

________________________________________________________________________

Message: 2

Date: Thu, 15 Jul 2004 13:40:25 -0000

From: " abbybb1 "

Subject: Courage

Well, hello:

Yours and Sandie's names were among the first I saw when I signed

back on here this morning very early.

I gather you are getting excited about your grandson. I waded

through e-mails until I found yours talking about the confirmation of

a boy named . How exciting!! With my second I wanted to know

the sex so I could prepare myself and my son Adam for the arrival.

It helped me enjoy the certainty of my second son so much in advance.

Is feeling better? I recall she wasn't feeling that well at

the end of June. Has she gotten any better or is she just trying to

develop ways to cope with the ickiness.

I think Max's rose story is lovely and is yet another message for you

that he's still looking out for you and wants you to know he's OK and

wants you to be OK too.

Sorry to hear about your dad. That must have been really scary for

him at first and for you later. What caused that? I don't recall

reading about why that happened to him.

How's your fight going to get Olivia into the nh of your choice. I

know it can be tough. It wasn't until the doctor's at St. Mike's

came onside with us that we were able to get my dad in at his place.

It's really frustrating being caught amidst rolls and rolls of red

tape.

My Nasty neighbour is also driving me mad. She has informed the city

that our air conditioner is in the wrong spot and we and several

other of our neighbours have to move it in order to meet the by-law

requirements. She's awful!! We bought the house and found these

things here but she's determined to be difficult and is now paying

the price since a few of her neighbours have reported the size of her

deck and the placement of her shed. Round and round it goes. It's

far too frustrating for me to keep up with.

Anyhoo, hello again. I've missed " chatting " with you like this.

Abby

________________________________________________________________________

Message: 3

Date: Thu, 15 Jul 2004 13:31:29 -0000

From: " abbybb1 "

Subject: Sandie and

Hello to you both:

Sandie, I sent an e-mail to you a few weeks back and another to you

this morning. Look in your box for my latest.

I never knew you had a heart condition. They are mentioning the

possibility of arythmia(sp??) for my husband as well and are doing a

whole series of tests. As I told , he's a true chicken when it

comes to needles and he's been pricked and prodded and had tonnes of

blood drawn from him. The result is his electolytes are down and he

needs to monitor his caffeine consumption. has just informed

me that chocolate was one thing she had to monitor once the same

thing began happening to her. Whatever will you do Sandie? Is there

caffeine free chocolate and, if there is, does it taste quite so

chocolately?

Sandie, seriously, you need to get this checked and monitored. After

observing what's happened to my husband, I know more than ever that

you don't overlook possible heart ailments. You owe it to yourself

and each of us who care for you to investigate ways to make this

better. Please Sandie, don't be passive about this. (I'm joining

forces with you and am resolved to nag her to death until she

sees someone who can tell her what's up with her heart.)

My husband's cousin who lives in Windsor is having her bridal shower

this weekend. Windsor (located on the border of Detroit) is a 4 hour

drive away. My husband's parents and sister want to drive down with

us but I'm weary given my husband's palpitations. He last had them

on Tuesday but, by the time we got him back to emergency, they had

subsided. He wants to get to see his aunt who is elderly and he wants

to bring the kids but I'm a little less secure. What do you think?

Well, my kids are off to camp and my husband's going out in search of

a printer cartridge. He's been home and it's been wonderful. How I

wish he were on vacation instead of being home because of this. He

goes back to work on Monday and I'll miss him but also hope life

returns to normal for him since he spends much of his time pacing the

floor.

I'm off to do some more Special Education work and hope to be done

before noon (wishful thinking, I know).

Thanks for your friendship and for caring Sandie and . You

are truly the best friends ever,

Abby

________________________________________________________________________

Message: 4

Date: Thu, 15 Jul 2004 13:48:53 -0000

From: " abbybb1 "

Subject: Josie

Josie:

It does my heart good to see your name here. It's right somehow that

you found your way back to us - even if it is temporarily.

I do think my husband's life is stressful. At work, he's an

itinerant supervisor who moves from condo and building site to other

conds and building sites ensuring that the work is being completed

and that the men who work for his company are showing up for work.

On top of that there is the " stuff " that is going on with my family

which have wrecked havoc on his life. Like you, he's having a hard

time with the coffee thing but we've switched to decaf coffee and

he's being a really good sport about it. I recently bought

a " Pilates " beginner tape. Perhaps we could do it together.

You must be missing your girls. Is home with you for the

summer? I know you said she was at summerschool but is she back with

you?

My boys are great. They're in a half day summer camp so I can work

on this bloody course and then we're doing tonnes with them. I'm

determined to make up for the horrible summer they had last year when

things with my dad were really horrible. We've had an above-ground

pool installed and we're taking them to Canada's Wonderland

throughout the week so that they don't have a chance to be bored. As

well, now that I'm not working I'm spending time catching up with

friends who have their own kids so they've had a lot of company

recently. I'll never be able to recreate for them the fun they

should have had last summer but I'm trying.

Thanks again for the post. After writing to Sandie, I was going to

go onto my course work but, when I saw your name, I just had to

post. To me, so much of what this board has done for me is

attributed to you and my early days of struggling with my dad's d/x.

Lots of love and all good things,

Abby

________________________________________________________________________

Message: 5

Date: Thu, 15 Jul 2004 14:14:46 -0000

From: " Patti "

Subject: Re: DLBD Patient would like to say Hello

Thank you for saying this as I am much the same way. I enjoy the

simple crossword puzzle books even though it may take some time to

complete one evenually the word I am looking for will come to mind. I

enjoy playing with my grandchildren which involves reading them

childerens stories and with no embarrassment there. Also we will sit

down with a coloring book and color pages together or we will water

color. I find I enjoy programs that are educational like quilting,

painting, construction, decorating along with those that are even

geared for children. I do find that Saturday morning cartoons are

agitating though. word search is another one I can enjoy, but it

seems to bore me and doesn't hold my concentration that long. I also

enjoy watching shows that are on PBS. I asked for some paints last

Christmas, but I haven't done anything with them yet. I will one day.

I would like some different colors to work with. I was a quilter and

love quilts and have some I am hand quilting that I do need to finish

but lack the concentration to do it for vey long. I think what you

suggest is really good and as I have had a wide variety of interests

I will probably continue to do such different

things......Hugs....Patti

> > > Dear Patty:

> > >

> > > I am Josie, I have been lurking for a long time. I was very

> active

> > on the

> > > site, but could not handle the pain anymore and had to give it

> up.

> > Hi,

> > > everyone, my dear friends, I continue to pray for all of you.

> It

> > took Patty's

> > > enourmous courage and clarity to bring me back, I will go back

> to

> > lurking soon.

> > >

> > > Patty: My dad was diagnosed with LBD very late in his disease.

> We

> > got the

> > > diagnosis about one and a half months before he passed away.

He

> > had all the

> > > symptoms for quite a few years, especially his problems with

> > walking and falling

> > > down. He had problems formulating his thoughts into words only

> the

> > last few

> > > weeks of his life. Before that, he became very animated and

> > coherent whenever

> > > he had company and did not seem to be bad at all. He was able

> to

> > continue to

> > > give us advice and encouragement until the end. He did not

read

> by

> > himself or

> > > watch TV for over a year, but my mom read to him. She kept him

> > busy playing

> > > computer games, dominoes and everything else he could be

> interested

> > in.

> > >

> > > I would like to know whether you feel that you can communicate

> > better by

> > > typing on the internet than by having to speak. Whether the

> words

> > come easier

> > > through your fingers than through your mouth, or is it that you

> can

> > take your

> > > time typing? My dad became frustrated when he could not speak

> the

> > words that we

> > > all realized he was thinking in his mind and even more

> frustrated

> > when we

> > > tried to guess and guessed wrong.

> > >

> > > You said that your mom had the same symptoms you had. It seems

> to

> > me that it

> > > can really run in families. My dad's side of the family has a

> > history of

> > > this type of behavior, and one of his sisters is having a lot

of

> > trouble with it

> > > now, she has not been diagnosed yet, but she can't remember

> > anything or make

> > > any desicions by herself. My dad's uncle died of Parkinson's

> and

> > my

> > > grandmother had dementia for several years before she died.

> > >

> > > I admire you so much, as all of the other members here do as

> > well. You are

> > > very courageous and knowledgeable and we really appreciate

being

> > able to get

> > > your point of view. You and your family have my prayers and

> > support, hugs,

> > >

> > > Josie

> > >

July 16, 2004

Happy Birthday and Anniversary. God Bless you both

Jacqui

July 17, 2004

Way to go Phyllis, many congratulations to you on your birthday and to you and

Jim on your anniversary, saying a prayer for jim's health on you 50th.

.x

Re: DLBD Patient would like to say Hello