Re: new member (from canada)

[Guest guest]

jenny

hi jenny welcome back, i am sorry that your dad was not a candidate for teh

new medicies and i am also grateful tahtyou have such a wonderful doctor and a

great nh for him i know you are so pleased about both,

my husgand and i moved down to pensacola florida in jan 03 because my dad

asked us to move down and help him at time he was having mild shakes, paranoid

hallucinations an d mostly unexplained falls, my dad was a helicopter pilot for

the us navy for years so all of this upset him terribly, this past may we

had to hospitlize dad for 3 weeks wthis is where we got the diag of lbd, and e

is quite typical case, he now walks with assistacne and with a walker and has

the lbd gait,

feel free to vent, scream yell, ask, cry, laugh share stories, share tears,

share life'a stories. we are all here thru the thick and thin, take care adn

good luck hugs, sharon m pensacola florida

a smile a day keeps the meanies away!!!

laughter is a breath of fresh air!

[Guest guest]

Welcome back. Hope we don't scare you away again. This group has been a God

Sent for me.

I would love to hear more about the new drug you mentioned. I pray your

doctor will profect it and pass it along to the rest of the world. It would be

wonderful if a cure is found.

Please feel free to let us know what is happening. We do care.

Hugs and Prayers

Jacqui

[Guest guest]

commented:

we are extremely lucky b/c my dad's doctor is one of the leading researchers

on lbd. . . . we are a VERY close family and we've only gotten closer b/c

of all this.

*******************************

Believe me, you DO have two very important reasons to be thankful!!! I

would settle for just one of the above!

carol

[Guest guest]

Hi , welcome back to the group. I am sorry that your dad doesn't

qualify for your Dr.s new drug therapy, but I totally understand when

you say he wouldn't want life prolonged and be living the way he is.

The private care home he is living in sounds wonderful, and I am sure

that has put your minds at ease about that part of his care. Mum

lives in a similar situation here in Ontario. She loves her place and

has only good things to say about it - even on her bad days!

Take care, hope to " see " you here again.

.

[Guest guest]

,

Good to see you back. I am qurious as to what made them decide your Dad

had LBD and then move it to AD also? I was never as fortunate as you

and did not get DX for my Mom. I just knew it was Alzheimers as she

looked so different from the other people she was in a group with that

did have AD.

Sorry to hear the new drugs might be a little late for your Dad.

Donna R

[Guest guest]

hi donna,

thanks for the e-mail.

we don't know with 100% certainty that my dad has alzheimer's. when his

doctor (lbd specialist) tested him a few months ago, he made the diagnosis.

he said that there have been notable changes in the direction of

alzheimer's. without doing a cat scan or mri, we won't know for sure, but we

don't want to put my dad through that. we tried having one done a year or so

ago, but he was way too claustrophobic and stopped it within minutes. his

dr. is 95% sure that he has alz. and that's good enough for us. he's not

changing his meds at this point. the meds aren't really doing anything for

him anymore. he's too far gone.

it's great to see the love and support in this group. i'm definitely going

to tell my mom about the group for spouses. i think it would be beneficial

for her.

hugs,

jenny

>From: twomido@...

>Reply-To: LBDcaregivers

>To: LBDcaregivers

>Subject: Re: new member (from canada)

>Date: Sat, 13 Nov 2004 23:20:09 -0500

>

>,

>

>Good to see you back. I am qurious as to what made them decide your Dad

>had LBD and then move it to AD also? I was never as fortunate as you

>and did not get DX for my Mom. I just knew it was Alzheimers as she

>looked so different from the other people she was in a group with that

>did have AD.

>

>Sorry to hear the new drugs might be a little late for your Dad.

>

>Donna R

>

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[Guest guest]

noted:

we don't know with 100% certainty that my dad has alzheimer's.

**********************

There is no certainty in any dementia diagnosis - until after death and a

brain autopsy anyway. . .

carol

(As it is said, nothing is certain except death and taxes!! <g>)

[Guest guest]

,

Sorry I left out one little word. I meant to say my Mom did NOT look

like the AD people she was in the group with. I was just wondering what

were the differences that made the MD think your Dad had AD as well as

LBD. What behaviors did he exhibit, or what did he do that made him

think your Dad had both.

Carol, I do know there is no certain way to know for sure. And I did

not get an autopsy. But Mom could tell me what was going on with her

right up until the week before she died. She had a difficult time

getting out what she meant, but there was always awareness. And if I

asked a question, she could understand and answer with a yes or no and

sometimes even go on and explain briefly.

Donna R

[Guest guest]

Donna asked :

What behaviors did he exhibit, or what did he do that made him think your

Dad had both.

*************************

In my mom's case, she was diagnosed with Alz in April, 2000. She saw a

neurologist from the Northwestern Alz. Disease Research Ctr in November 2001

mainly because I forced my sister to take her and there was no mention of

any different diagnosis.

When my mom was in the hospital last summer, our primary doctor was very

impressed with my mom's ability to remember who everyone was at the hospital

and he opined that she might not have Alz after all. Of course, he knows

very little - or so I think - about dementia - even though he is a wonderful

doctor in every other respect. The idea of LBD came from Geri Hall, an

astoundingly wonderful nurse practitioner who posts on the Alzheimer's List.

She brought up LBD because my mom does have some slight Parkinson's

symptoms. That is in part how I found this list.

In any case, it would be a battle akin to the U.S. Civil War for me to try

and get my sister to ever again take my mom to see another neurologist.

It's difficult enough to get her to take my mom to see our regular doctor

twice a year as he requested!!!! However, at some point, I will just have

to work up my nerve (I can be a bit wimpy sometimes) and discuss my desire

for my mom to occasionally see a specialist with our doctor.

[Guest guest]

Sorry - I do have a bad habit of accidentally keeping the mouse next to the

send square and one wrong click and OOPS!!!

I only wanted to add that I have a feeling my doctor sees no need for my mom

to see a neurologist or other specialist. In a way, I guess it does not

matter because my mom is doing quite well, all things considered. Her

biggest problem is real difficulty walking. She has no adverse reactions to

any meds and no hallucinations and her PD-like symptoms are not pronounced.

Still, I, for one, would feel so much better knowing my mom could see

someone - even very occasionally - who actually KNEW something about

Alzheimer's and LBD. I know more about dementia than our doctor does and

certainly WAY more than my POA sisters!!!!

carol