Re: Re: Persistant problem/Darryl

[Guest guest]

Hi Darryl,

I live in Lafayette, not far from you. My husband goes to Walnut Creek Kaiser

and his neurologist is the one that diagnosed him with Lewy Body in 2003

Boyd wrote:

We are in ez and Concord area in SF Bayarea.

I don't think it is heart problems as they have done two EKG now in

the last 6 months (last one on tuesday) and her was fine. If it is

something to do with the BP then I am not as worried. They will get it

under control I think.

I'm just concerned it is LBD. I don't know and I don't think they do

either. Here is my last email from her doctor this AM.

" Hi Mr. Boyd,

It's not really clear to me why she has this leg pain. IT could be

cramps from the Atenolol but that should be out of her system soon.

The Vicodin does not affect Lewy Body disease as far as I know. I

recommend giving her the Vicodin every 4 hours if she needs it to keep

her pain under control. Take care "

Doesn't give me a lot of confidence. She is in a lot of pain this AM

again and the vicodin really doesn't help her a lot.

I called " Complex Cronic Care " department yesterday. They specialize

in elder care and cronic conditions. All I got from them was " Boy, she

has a lot going on " . I thought I called the wrong department!

I don't know what to do.

Darryl

> > My Mom was diagnosed with LBD back in May. She had some habitations

> > that were controlled with Seroquel (smallest dosage). She was not

> > getting any sleep for about 2 months we found out later. The Seroquel

> > helped her get to sleep and stopped the hallucinations. She also got

> > the " shuffling walk (Parkenism). At first I saw no dementia problems

> > and don't see many if at all today.

> >

> > They were also trying to get her blood pressure under control before

> > that and trying different BP medicines. Most of them made her sick or

> > did not work. Around June they put her on Atenelol and that lowered it

> > somewhat and did not make her sick at that time. They added another BP

> > medication later and then the BP went too low. So they eliminated it.

> >

> > Through all of this she has had some nausea in the AM and her legs

> > " seem heavy " and ach off and on.

> >

> > A few weeks ago these symptoms of the nausea and Legs have been

> > getting worse until Sunday when she was in so much pain in the legs

> > (ach and tingling feeling and could not get comfortable) and the

> > nausea just would not stop. We went in to the emergency and they felt

> > it might be the Atenolol as the side effects for that drug is the same

> > as she was having including minor dizziness, cold feet and hands,

> > nausea, aching legs, tiredness).

> >

> > So they stopped the Atenolol that night and she slept poorly, but on

> > Monday she only had mild problems with the symptoms in the morning

> > then they stopped. We went into her doctor that afternoon and she said

> > she had never had any problems with Atenolol like that but to be

> > cautious, she stopped it and had us use the other BP medication

> > (Felodipine) instead.

> >

> > Now for the problem. This morning (Tuesday) she had all the Legg

> > problems and the nausea in the am again and it is tapering off.

> >

> > I'm lost here. Could it be the new BP medicine or maybe the old has

> > not left her body yet, or could it be the Seroquel? Some of the side

> > effects of Seroquel are tiredness and nausea. I though (or hoped) some

> > of you might know!

> >

> > Sorry for the long post!!! I don't know what to do for her!!!

> >

> > Darryl

> >

> >

> >

> > --

> > I am daugher of Leonard, diagnosed May 2004, probably had lbd since

> 1993,.Dad had a serious fall in 7/05 causing him to hav hip surgery

> .After that he developed aspiration pneumonia 7/05 with pulmonary

> embolyis, which he almost died from. He had a 2nd bout of aspiration

> pneumonia and uti 8/05. He died when his blood pressure fluctuations

> started dropping without coming back up on 9/25/05,

> > may he rest in peace with his mom and dad,

> > a smile a day keeps the meanies away

> >

> >

> >

> >

> >

[Guest guest]

Darryl,

Could it be something else that no one has thought about. Did she fall? Could

she have damaged her hip or leg? I keep thinking that LBD people do have a hard

time telling where the pain is and I wonder how you know she is in pain and how

you know it's location. Even moving her legs around doesn't necessarily mean it

is her legs. If you put your hands on her legs, does she cry out or flinch?

Is she bed ridden? Does she sit a lot.? That can cause swollen ankles. My Mom

had swollen ankles but she was in a wheel chair all day.

I hope you found Jan's note and find a place that can help you.

Hug,

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

Re: Re: Persistant problem/Darryl

Hi Darryl,

I live in Lafayette, not far from you. My husband goes to Walnut Creek Kaiser

and his neurologist is the one that diagnosed him with Lewy Body in 2003

Boyd wrote:

We are in ez and Concord area in SF Bayarea.

I don't think it is heart problems as they have done two EKG now in

the last 6 months (last one on tuesday) and her was fine. If it is

something to do with the BP then I am not as worried. They will get it

under control I think.

I'm just concerned it is LBD. I don't know and I don't think they do

either. Here is my last email from her doctor this AM.

" Hi Mr. Boyd,

It's not really clear to me why she has this leg pain. IT could be

cramps from the Atenolol but that should be out of her system soon.

The Vicodin does not affect Lewy Body disease as far as I know. I

recommend giving her the Vicodin every 4 hours if she needs it to keep

her pain under control. Take care "

Doesn't give me a lot of confidence. She is in a lot of pain this AM

again and the vicodin really doesn't help her a lot.

I called " Complex Cronic Care " department yesterday. They specialize

in elder care and cronic conditions. All I got from them was " Boy, she

has a lot going on " . I thought I called the wrong department!

I don't know what to do.

Darryl

> > My Mom was diagnosed with LBD back in May. She had some habitations

> > that were controlled with Seroquel (smallest dosage). She was not

> > getting any sleep for about 2 months we found out later. The Seroquel

> > helped her get to sleep and stopped the hallucinations. She also got

> > the " shuffling walk (Parkenism). At first I saw no dementia problems

> > and don't see many if at all today.

> >

> > They were also trying to get her blood pressure under control before

> > that and trying different BP medicines. Most of them made her sick or

> > did not work. Around June they put her on Atenelol and that lowered it

> > somewhat and did not make her sick at that time. They added another BP

> > medication later and then the BP went too low. So they eliminated it.

> >

> > Through all of this she has had some nausea in the AM and her legs

> > " seem heavy " and ach off and on.

> >

> > A few weeks ago these symptoms of the nausea and Legs have been

> > getting worse until Sunday when she was in so much pain in the legs

> > (ach and tingling feeling and could not get comfortable) and the

> > nausea just would not stop. We went in to the emergency and they felt

> > it might be the Atenolol as the side effects for that drug is the same

> > as she was having including minor dizziness, cold feet and hands,

> > nausea, aching legs, tiredness).

> >

> > So they stopped the Atenolol that night and she slept poorly, but on

> > Monday she only had mild problems with the symptoms in the morning

> > then they stopped. We went into her doctor that afternoon and she said

> > she had never had any problems with Atenolol like that but to be

> > cautious, she stopped it and had us use the other BP medication

> > (Felodipine) instead.

> >

> > Now for the problem. This morning (Tuesday) she had all the Legg

> > problems and the nausea in the am again and it is tapering off.

> >

> > I'm lost here. Could it be the new BP medicine or maybe the old has

> > not left her body yet, or could it be the Seroquel? Some of the side

> > effects of Seroquel are tiredness and nausea. I though (or hoped) some

> > of you might know!

> >

> > Sorry for the long post!!! I don't know what to do for her!!!

> >

> > Darryl

> >

> >

> >

> > --

> > I am daugher of Leonard, diagnosed May 2004, probably had lbd since

> 1993,.Dad had a serious fall in 7/05 causing him to hav hip surgery

> .After that he developed aspiration pneumonia 7/05 with pulmonary

> embolyis, which he almost died from. He had a 2nd bout of aspiration

> pneumonia and uti 8/05. He died when his blood pressure fluctuations

> started dropping without coming back up on 9/25/05,

> > may he rest in peace with his mom and dad,

> > a smile a day keeps the meanies away

> >

> >

> >

> >

> >