Re: scared with questions

[Guest guest]

Hi, Elise. Each affecting with LBD can react differently with the various

medications. My mother (now 89 and 5 years since her diagnosis) could not

tolerate the Aricept. From the very first dose, she experienced frightening

hallucinations. After three days of nightmares and hallucinations that left her

stressed and sleepless, I stopped the medication. The pharmacist asked me to

give it more time so it could get fully into her system but I just couldn't put

Mom through more of her constant fear. Following that, Mom was put on Seroquel

(of course, all meds are started at the lowest dose and slowly increased to what

the doctor determines is the maximum) which ended the frightening images

immediately. Mom has remained on Razadyne and Namenda even though the Seroquel

was discontinued a few years ago. I did ask the doctor to cut the dose on the

Razadyne...the higher dose left her too fatigued to function. We backed it down

slowly until an improvement was noted.

Unfortunately, most of the meds are on a trial basis. Sometimes, the dose needs

to be adjusted while some meds might not work at all.

As for your own fears, it is very understandable. We enter this world with our

loved one and soon realize we have to monitor everything closely and really take

charge of everyday decisions. By educating ourselves, the journey can be made

easier for both ourselves and our loved ones. This group has been instrumental

in my personal learning experience; I encourage you to take advantage of the

years of wisdom shared, adding gems of wisdom you might gather on your own.

Best wishes to you and yours,

Lynn in Florida

snip> > Does anyone have any advice about continuing the Aricept based on the

side effects it seems to be causing?

[Guest guest]

Elise this is a very scary thing to deal with at first, every one of us

here understands that . But as we learn more about the disease and

start taking control and advocating for our loved ones, finding the

right doctor, the right meds, the right responses to their behaviors,

much of the fear is replaced by confidence in dealing with them and any

professionals that are involved in their care.

I can only compare to my own mother's situation; Aricept worked

amazingly well with her (and still does); she is also on several other

meds, and the combination of them - all at low doses - has kept her

" stable " (behaviorally and cognitively) for nearly 2 years. So finding

the right doctor (which you may already have) and the right mix of meds

(which may or may not include Aricept, there are others) and a good

environment for him will be key in helping him to do as well as

possible...

My best to you and your family...

--

His,

Sherry in Michigan

daughter/guardian of , dx 4/08 with LBD, living in a nearby NH

> Hello, all,

>

> I am new to this site and vey scared, as I'm sure all of you were in the

beginning. I have a rare lung disease myself called primary pulmonary

hypertension, and the message board on the Pulmonary Hypertension Association

website has been a Godsend to me, so I was excited to find this website for Lewy

Body as well.

>

> My wonderful father, who will be 85 in two weeks, was just diagnosed last week

with LBD. He has been in excellent health up until now, so this has been a huge

shock. I started to notice he was getting a little more forgetful sometime this

winter, but it seemed manageable. Then he kept talking about these vivid dreams

he was having, and how he would get up in the middle of the night to look around

the apartment because he had dreamed someone was there (he has lived alone the

last three years since my beautiful mother died of heart disease.)

>

> Then, about six weeks ago he started telling us he thought he had carpet

beetles in his apartment. He said he was seeing " swirls " or " movement " and the

" aftermath " of a bug " feeding frenzy. " After determining there were no bugs and

that his eyes were fine, we took him to a geriatric specialist, who did memory

tests and gave us the LBD diagnosis. They put him on Zoloft and Aricept.

>

> Almost immediately, Dad started experiencing extreme fatigue, loss of

appetite, trouble sleeping and staying asleep and some muscle cramps. We took

him off the Zoloft, and now we are wondering if we should take him off the

Aricept, as these symptoms are listed among possible side effects. My dilemma is

that if the Aricept will help his memory, is it worth it to wait to see if the

side effects will last?

>

> The doctor said he was in the early stages of LBD and the progression will

likely be slow, but since he got diagnosed and started these new meds, he seems

so much worse! Before this, he only took a diuretic for mild high blood pressure

and a baby aspirin.

>

> Does anyone have any advice about continuing the Aricept based on the side

effects it seems to be causing?

>

> Thank you for any help anyone can give me. I am so lost right now as I try to

process all this, and I know my dad feels the same way.

>

> Elise in Illinois

[Guest guest]

The problem is if it is the Aricept, the longer he's on it, the longer the

withdraw will be. If there's a chance that's what's causing the problem I would

stop it. Also check any over-the-counter meds he might have on hand. If he's

living alone and somewhat forgetful he can get into a lot of trouble

self-medicating with OTC's.

>

> Hello, all,

>

> I am new to this site and vey scared, as I'm sure all of you were in the

beginning. I have a rare lung disease myself called primary pulmonary

hypertension, and the message board on the Pulmonary Hypertension Association

website has been a Godsend to me, so I was excited to find this website for Lewy

Body as well.

>

> My wonderful father, who will be 85 in two weeks, was just diagnosed last week

with LBD. He has been in excellent health up until now, so this has been a huge

shock. I started to notice he was getting a little more forgetful sometime this

winter, but it seemed manageable. Then he kept talking about these vivid dreams

he was having, and how he would get up in the middle of the night to look around

the apartment because he had dreamed someone was there (he has lived alone the

last three years since my beautiful mother died of heart disease.)

>

> Then, about six weeks ago he started telling us he thought he had carpet

beetles in his apartment. He said he was seeing " swirls " or " movement " and the

" aftermath " of a bug " feeding frenzy. " After determining there were no bugs and

that his eyes were fine, we took him to a geriatric specialist, who did memory

tests and gave us the LBD diagnosis. They put him on Zoloft and Aricept.

>

> Almost immediately, Dad started experiencing extreme fatigue, loss of

appetite, trouble sleeping and staying asleep and some muscle cramps. We took

him off the Zoloft, and now we are wondering if we should take him off the

Aricept, as these symptoms are listed among possible side effects. My dilemma is

that if the Aricept will help his memory, is it worth it to wait to see if the

side effects will last?

>

> The doctor said he was in the early stages of LBD and the progression will

likely be slow, but since he got diagnosed and started these new meds, he seems

so much worse! Before this, he only took a diuretic for mild high blood pressure

and a baby aspirin.

>

> Does anyone have any advice about continuing the Aricept based on the side

effects it seems to be causing?

>

> Thank you for any help anyone can give me. I am so lost right now as I try to

process all this, and I know my dad feels the same way.

>

> Elise in Illinois

>

[Guest guest]

This isn't drug related but it is very important to understand that as scared as

you are, your father is probably twice as scared.

Imagine yourself in his shoes. Suddenly you can't trust your own instincts and

you're afraid of telling anyone what you are experiencing for fear that they

might harm you, abandon you or worse. Please keep in touch with him every day.

Check in as often as possible and trust your instincts. If you get the urge to

call, call. If nothing else he'll appreciate your thoughtfulness.

His independence won't last long. Think ahead about getting him into a situation

with you or some other trusted caregiver(s) so he'll have someone to watch out

for him 24/7.

Most of all, try to avoid thinking of him as a " patient " . If all you think about

is how bad off he is, whether or not he's taking his meds or what's ahead for

him, you'll miss all the good times yet to come. Please don't fret so much over

spilled milk or misplaced words but take time to laugh with him, reminisce with

him, and just be with him. When your world is shrinking it's the little things

that mean the most.

>

> Hello, all,

>

> I am new to this site and vey scared, as I'm sure all of you were in the

beginning. I have a rare lung disease myself called primary pulmonary

hypertension, and the message board on the Pulmonary Hypertension Association

website has been a Godsend to me, so I was excited to find this website for Lewy

Body as well.

>

> My wonderful father, who will be 85 in two weeks, was just diagnosed last week

with LBD. He has been in excellent health up until now, so this has been a huge

shock. I started to notice he was getting a little more forgetful sometime this

winter, but it seemed manageable. Then he kept talking about these vivid dreams

he was having, and how he would get up in the middle of the night to look around

the apartment because he had dreamed someone was there (he has lived alone the

last three years since my beautiful mother died of heart disease.)

>

> Then, about six weeks ago he started telling us he thought he had carpet

beetles in his apartment. He said he was seeing " swirls " or " movement " and the

" aftermath " of a bug " feeding frenzy. " After determining there were no bugs and

that his eyes were fine, we took him to a geriatric specialist, who did memory

tests and gave us the LBD diagnosis. They put him on Zoloft and Aricept.

>

> Almost immediately, Dad started experiencing extreme fatigue, loss of

appetite, trouble sleeping and staying asleep and some muscle cramps. We took

him off the Zoloft, and now we are wondering if we should take him off the

Aricept, as these symptoms are listed among possible side effects. My dilemma is

that if the Aricept will help his memory, is it worth it to wait to see if the

side effects will last?

>

> The doctor said he was in the early stages of LBD and the progression will

likely be slow, but since he got diagnosed and started these new meds, he seems

so much worse! Before this, he only took a diuretic for mild high blood pressure

and a baby aspirin.

>

> Does anyone have any advice about continuing the Aricept based on the side

effects it seems to be causing?

>

> Thank you for any help anyone can give me. I am so lost right now as I try to

process all this, and I know my dad feels the same way.

>

> Elise in Illinois

>

[Guest guest]

Elise,

I had the same problem with Mom on Aricept and took her off them. It wasn't

worth it to me and she did ok without them for 4 years.

She had a real bad time with most meds.

Hope this helps. It is always a weight problem. Which side do you come down on

with meds or without them. I just let her do her thing without them. She died

at 88 and 1/2. She was about 84 when she finally came to live with me.

Hugs,

Donna R

Cared for Mom 3 years in my home and the last year at a nh. She passed away

from LBD in 2002.

scared with questions

Hello, all,

I am new to this site and vey scared, as I'm sure all of you were in the

beginning. I have a rare lung disease myself called primary pulmonary

hypertension, and the message board on the Pulmonary Hypertension Association

website has been a Godsend to me, so I was excited to find this website for Lewy

Body as well.

My wonderful father, who will be 85 in two weeks, was just diagnosed last week

with LBD. He has been in excellent health up until now, so this has been a huge

shock. I started to notice he was getting a little more forgetful sometime this

winter, but it seemed manageable. Then he kept talking about these vivid dreams

he was having, and how he would get up in the middle of the night to look around

the apartment because he had dreamed someone was there (he has lived alone the

last three years since my beautiful mother died of heart disease.)

Then, about six weeks ago he started telling us he thought he had carpet beetles

in his apartment. He said he was seeing " swirls " or " movement " and the

" aftermath " of a bug " feeding frenzy. " After determining there were no bugs and

that his eyes were fine, we took him to a geriatric specialist, who did memory

tests and gave us the LBD diagnosis. They put him on Zoloft and Aricept.

Almost immediately, Dad started experiencing extreme fatigue, loss of appetite,

trouble sleeping and staying asleep and some muscle cramps. We took him off the

Zoloft, and now we are wondering if we should take him off the Aricept, as these

symptoms are listed among possible side effects. My dilemma is that if the

Aricept will help his memory, is it worth it to wait to see if the side effects

will last?

The doctor said he was in the early stages of LBD and the progression will

likely be slow, but since he got diagnosed and started these new meds, he seems

so much worse! Before this, he only took a diuretic for mild high blood pressure

and a baby aspirin.

Does anyone have any advice about continuing the Aricept based on the side

effects it seems to be causing?

Thank you for any help anyone can give me. I am so lost right now as I try to

process all this, and I know my dad feels the same way.

Elise in Illinois