Thank you

[Guest guest]

Welcome to the board GC. Yes, you'll find lots of useful information

here. Pose all the questions that you have and we'll be there for you

during this roller coaster ride. In the meantime, click the link in my

signature and go to the Links section of the board - there are a lot of

useful information for you there. Since your dear ole dad will be

moving in with you - go to the Home Safety folder to find links to

sites to help make your home safe for your dad. You should also contact

your local elder services and have them visit your home so that they

can give you suggestions on what to do to safe guard your home for your

dad.

; loving daughter of Maureen of Boston, MA; finally diagnosed

with LBD on 2/06 after also being diagnosed with everything from AD to

Vascular Dementia caused by mini strokes to Binswengers...; was victim

to rapid decline from Risperidone (or combination of Risperidone with

other drugs OR possibly received another " bad drug " when she was

observed/tested in a hospital in 10/05); in a NH since 11/05. Update:

on antidepressant Celexa, 20mg (still teary, but not as weepy) and as

of 4/21 on Exelon.

Visit the LBDCaregivers board on the web:

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

(See files, suggested links, databases, photos of members, and search

previous posts)

>

> Thank you for letting me join your group.

> My 84-year-old Dad just got diagnosed with LBD.

> We knew he had some form of older-age dementia, now we know what it

is.

> He wants to live with me, he is still the good ol' Dad I always

loved, just

> infirm with age, and with a progressive " lessening " . I am taking him

in soon.

> I am sure this group will be great for me, and Dad and his other

sons!

>

> Thanks!

> GC

>

>

>

[Guest guest]

I am Wally and Eileen's youngest daughter Vicki and they are NOT a

burden to me but I feel blessed to be able to spend so much time

with them. They are a joy to be around and I enjoy seeing them

nearly twice or more a week.

They have been wonderful parents and continue to be. I had a

marvelous childhood and am so thankful that my 2 daughters (3 &

18mo) are able to spend time with and will KNOW their grandparents.

BTW - I love everyone signing HUGS! Makes you feel really loved!

Hugs,

Vicki

>

> I want to thank all that have welcomed me with open arms. I am

very touched

> and moved by the warmth you have shown.

>

> Here are some stats about my husband.

>

> Wally is 76 yrs. old B/D 9-16-29

> Retired Operating Engineer (Heavy Equipment)

> Sinemet CR 3 times a day

> Sanctura

> Lexapro

>

> I noticed a couple years ago that he was quieter, drifting off and

would ask

> dumb questions. My kids and I laughed it off as " well that's a

man " . He was

> on Lipitor for cholesterol for almost 6 yrs.

>

> Went to a Neurologist beginning of 05, we didn't like this Dr. I

would ask

> him a question and he couldn't answer my question. He said it had

Alzheimer

> and gave him aricept. Wally had terrible reaction to the aricept

so stopped

> taking it. Nov. of 05 tried another Neurologist this Dr. said he

didn't have

> AD that it was PD. He didn't shake much and said it wasn't far

enough along

> to take any meds. April 06 went back and he said to take Vit. B-1

for his

> memory. Tried to call this Dr. and he or his staff would never

call back.

> Wally was feeling anxiety and problems in May. We had planned to

go down to

> Texas to visit 2 of our sons. Wally said lets go and maybe he

would feel

> better after seeing everyone down there. Uh Uh we drove 2 days

down there

> and we stayed only 3 days. He said we had to go back home or we

would never

> get home again. So we left and came home.

>

> Our son emailed me when we came home and said go to spacedoc.net

and read

> about statin drugs and Lipitor. I read about stain drugs and many

or the

> symptoms mirrored what he was feeling. So I took him off of

Lipitor and

> started him on what they recommended for natural help for

cholesterol. Which

> is COQ10, fish oil, Vit. B 1-6 and 12, folic acid, .81 mg.

aspirin. He also

> takes calcium and L-Carnitine.

>

> We did get into seeing our primary Dr. and she had him get a Cat

Scan of his

> brain and pelvic area. They found nothing wrong in the cat scan

and his

> blood work up was fine. The reason for the pelvic area was his

over active

> bladder problem.

>

> In the meantime he is having hallucinations of when he would go to

the

> bathroom the water was coming up and everything was flooding. If

he was

> laying on the couch or bed he thought he was flooding. He was

confused, had

> terrible anxiety, couldn't sleep and didn't know why this was

happening. He

> wanted to die and didn't know why God was punishing him. In this

month time

> before we got to see an neurologist we saw her 2 times and I

talked to her

> at least 4 or 5 times on the phone. She is wonderful calling back

and trying

> to help.

> She gave him Lexapro for anxiety and it helped till we could see

the

> neurologist.

>

> Finally after a month of trying to get to talk or an earlier

appointment

> with this Neurologist we got to see him on 6-29-06. As I am

telling him all

> of his problems which consisted of everything I wrote about in

previous

> paragraph, he put his hands to his head and shook his head and

hollered

> " Just answer my question.....Is he better after taking him off of

Lipitor. "

> He said he doesn't have Alzheimer he has Parkinson's and give him

Namenda.

> Gave me a sample of Namenda and he would see me in 5 weeks.

>

> I was told about another Neurologist and had made an appointment

with him

> for 7-5. I was so upset about this last Dr. that I called my

primary Dr.

> about the Namenda and she said don't start him on this till he

sees the new

> Neurologist. We saw the new Neurologist 7-5 and he is wonderful.

Listens to

> what you have to say and is very helpful and informative. He put

him on

> Sinemet CR and Sanctura for over active bladder. He was on Oxytrol

which is

> not good for PD patients because it causes memory loss. At this

time he said

> he has PD not AD. Suggested we go to a Neurophysiologist for

testing. Then

> we had another appointment with this Dr. and he said the results

from the

> testing in Lewy Body with PD. When we went back after 2 1/2 weeks

of being

> on the Sinemet Wally was more alert and didn't have that no

expression face

> and staring eyes, so the Dr. said the Sinemet must be working.

>

> I have read a couple of emails that Sinemet CR was not good for

LBD. Now I

> am concerned about that. Our next appointment with the Neurologist

isn't for

> 2 months.

>

> This is where we are today. He is not interested in TV and is

either laying

> on the couch or on the floor. He can still make something to eat

for

> breakfast and lunch. I have to dish out his pills because he says

he gets

> confused. He does not want to be alone so I am stuck in the house

with him.

> He says he has anxiety when I leave.

>

> I think I am drained writing this and I am sorry it is sooooooo

long. My

> letters will be shorter after this one. I promise!!!!!

>

> To the ladies that live in Illinois.......I live in Antioch and

retired last

> Nov. and am 66 yrs old. We have 5 children, 15 grandkids and 2

great

> grandson. One great grandson was born 7-31-06.

> 2 sons live in Texas

> 1 son in Central Illinois

> 2 daughter in Northern Illinois

>

> Thank you for listening to me,

> Eileen G.

>

[Guest guest]

I just wanted to say thank you for all the replies I got for " Does this mean I

have Chiari " . I have talked to dr Rosner because my son has an appt with him on

Tuesday and he said that he would look at me also. His nurse also said that

anything below the foramen magnum is not supposed to be there and this is their

specialty. So I'm very anxious to find out. I'm still in a lot of pain and my

neck feels so weak. I have only been dealing with this for a month and I have to

say you guys that have been battling this disease are some strong

people....including my son. Thank you again for all the support and answers. I

hope everyone is having a good day.