Re: New member - questions

[Guest guest]

Hi, ,

I am so sorry to hear about your grandfather, but I am glad you found our

group. It is a great bunch of people with lots to share. My father has been on

Memantine since February. It is also called Namenda in the US. My dad is in

the later stages of LBD, and Namenda is to be used in conjunction with

Aricept, another AD medication. Aricept has worked well for my dad for many

years,

before the Namenda. I have not been real pleased with the results of the

Namenda. However, some people in the group have had really good experiences

with

their LO and Namenda. Every patient with LBD responds so differently to the

same medications so you have to find what works for your grandfather. My

father's neurologist thought Namenda would be a waste of time, but I still

wanted to

try it for Dad. It has not caused any adverse reactions.

I am amazed that the VA was able to diagnose your grandfather with LBD.

There are so many medical professionals that have never heard of it. There are

medications that are helpful with LBD that can make your grandfather's quality

of life better for a time.

The insurance problem in this country stinks. Can your grandfather go on

Medicare? It is reasonably affordable and provides high quality medical care.

Thank you for sharing your story with us. Keep posting and let us know how

you are doing. You will find tons of information here.

Big hugs,

Piper

[Guest guest]

HI ,

I've heard that sticking to one doctor is very difficult in VA hospitals.

Perhaps your grandmother can keep an updated booklet on who your father say,

what they prescribed so that you can cut through the red tape? We do have

members her in FL who will be happy to help. These are a great bunch of

people.

Hang in there.

Courage

New member - questions

>Since my Grandfather was diagnosed by two different doctors, I have

>been searching the web to educate myself and my family on LBD. For

>the past couple of weeks, I have been learning everything I can about

>this disease. My Grandparents live in Florida, and my mom and I are

>in different states. My mom and I have been trying to tell the family

>that we thought my Grandfather had dementia for the last couple of

>years. Around 3 or 4 months ago he started having hallucinations.

>Very quickly he realized that they were not real, he told my

>Grandmother about it and she got him to see a Psychiatrist at the

>Veterans Hospital, where after only a few questions he was diagnosed

>with LBD. None of us had a clue about this disease, so my mom and I

>made arrangements to go visit. Before the appt, my mom sat my

>Grandfather down and asked him about the hallucinations, and he was

>able to describe in full detail all of them. The hallucinations don't

>bother him, but he is very acutely aware of what is going on with

>him, he tells my Grandmother that he doesn't know how much longer he

>will remember her, and that he is worried more about her than

>himself. While we were there we took him for a second opinion with a

>Neurologist, the four of us were in the examining room, and that had

>to be one of the toughest days for me, to see my Grandfather struggle

>to answer simple questions, to not be able to do simple math, to not

>be able to draw the face of a clock with the time the Dr. asked him

>to draw. At that appt. we truly saw what was happening to him. We

>were hoping that because he took so much medication (around 18

>different pills a day) that could be part of what was causing the

>hallucinations. He has started to have violent dreams, and his

>depression has only been getting worse.

>While we were in Florida he was taken to the emergency room for

>pneumonia, he has emphysema and any cold has to be taken seriously.

>My mom and I went back to our homes and he was released from the

>hospital a few days later, only to be readmitted again for his heart.

>The new doctors took him off most of his medication (most of which is

>for his heart, and his emphysema) and once he got home he had tons of

>energy and while at the hospital and once he got home he didn't have

>any episodes. Then the hallucinations started again this week, and

>seem to be getting worse. Yesterday he found himself talking into a

>mirror thinking he was talking to his brother. He has a tendency to

>fall more often now, and is taking to using a cane to help out. He

>has difficulty unclenching his right hand and is starting to have

>trouble with shaking uncontrollably, which I know are all symptoms of

>the PD.

>It's very hard and frustrating for my mom and me because we are so

>far away. I usually visit them two or three times a year, I just got

>back and already feel I should go back again. They need assistance

>and can't afford to get any. We are trying to get him to see just one

>doctor as his primary, at the veterans he sees a different doctor

>every time he is there and has been hospitalized for being over

>medicated. Unfortunately the Veterans is free for him and he doesn't

>have other insurance to pay for him to see another doctor. We are

>working on him getting insurance and seeing one primary doctor.

>The other thing that I am worried about is his medication, the

>physiatrists at the veterans just prescribed a med called Memantine

>HTL 5 mg, which I found to be an AD drug, and have found nothing for

>its use with LBD. He goes to some many different doctors and none of

>them have a clue what LBD is. I have told my Grandmother to take a

>written description of LBD with her to every Dr appt.

>Has anyone here heard or used this Memantine with LBD? And is there

>anyone in Florida that can recommend a Dr. that has experience-

>treating LBD?

>

>Thanks,

>

>

>

>

>

>

>Welcome to LBDcaregivers.

>

>

>

[Guest guest]

, welcome to the site, you will find much information from the

caregivers, as I have I'm caregiver to my 75 year old husband who, after a

stroke in Oct 2002, was dx'd with parkinson with LBD, however he is not on any

meds for either, since the meds the neuro. prescribed only made his paranoia and

agitation worse. There are others on the site that are familiar with the

memantine given to their Lo's. I'm sure they will help you to find answers.

LOL, SC Pat

M & M wrote: Since my Grandfather was diagnosed

by two different doctors, I have

been searching the web to educate myself and my family on LBD. For

the past couple of weeks, I have been learning everything I can about

this disease. My Grandparents live in Florida, and my mom and I are

in different states. My mom and I have been trying to tell the family

that we thought my Grandfather had dementia for the last couple of

years. Around 3 or 4 months ago he started having hallucinations.

Very quickly he realized that they were not real, he told my

Grandmother about it and she got him to see a Psychiatrist at the

Veterans Hospital, where after only a few questions he was diagnosed

with LBD. None of us had a clue about this disease, so my mom and I

made arrangements to go visit. Before the appt, my mom sat my

Grandfather down and asked him about the hallucinations, and he was

able to describe in full detail all of them. The hallucinations don't

bother him, but he is very acutely aware of what is going on with

him, he tells my Grandmother that he doesn't know how much longer he

will remember her, and that he is worried more about her than

himself. While we were there we took him for a second opinion with a

Neurologist, the four of us were in the examining room, and that had

to be one of the toughest days for me, to see my Grandfather struggle

to answer simple questions, to not be able to do simple math, to not

be able to draw the face of a clock with the time the Dr. asked him

to draw. At that appt. we truly saw what was happening to him. We

were hoping that because he took so much medication (around 18

different pills a day) that could be part of what was causing the

hallucinations. He has started to have violent dreams, and his

depression has only been getting worse.

While we were in Florida he was taken to the emergency room for

pneumonia, he has emphysema and any cold has to be taken seriously.

My mom and I went back to our homes and he was released from the

hospital a few days later, only to be readmitted again for his heart.

The new doctors took him off most of his medication (most of which is

for his heart, and his emphysema) and once he got home he had tons of

energy and while at the hospital and once he got home he didn't have

any episodes. Then the hallucinations started again this week, and

seem to be getting worse. Yesterday he found himself talking into a

mirror thinking he was talking to his brother. He has a tendency to

fall more often now, and is taking to using a cane to help out. He

has difficulty unclenching his right hand and is starting to have

trouble with shaking uncontrollably, which I know are all symptoms of

the PD.

It's very hard and frustrating for my mom and me because we are so

far away. I usually visit them two or three times a year, I just got

back and already feel I should go back again. They need assistance

and can't afford to get any. We are trying to get him to see just one

doctor as his primary, at the veterans he sees a different doctor

every time he is there and has been hospitalized for being over

medicated. Unfortunately the Veterans is free for him and he doesn't

have other insurance to pay for him to see another doctor. We are

working on him getting insurance and seeing one primary doctor.

The other thing that I am worried about is his medication, the

physiatrists at the veterans just prescribed a med called Memantine

HTL 5 mg, which I found to be an AD drug, and have found nothing for

its use with LBD. He goes to some many different doctors and none of

them have a clue what LBD is. I have told my Grandmother to take a

written description of LBD with her to every Dr appt.

Has anyone here heard or used this Memantine with LBD? And is there

anyone in Florida that can recommend a Dr. that has experience-

treating LBD?

Thanks,

Welcome to LBDcaregivers.