Re: Question re neurologist visit

[Guest guest]

If I might suggest a book called, " The caregivers guide to Lewy body demetia " by

Hellen Buel Whitworth.  It covers all these types of issues and several more. 

It's available on Amazon in both hard copy and kindle.  I'm currently reading

it and it's been extremely informative.

http://www.amazon.com/Caregivers-Guide-Lewy-Dementia-ebook/dp/B004Q9SVF2/ref=sr_\

1_2?ie=UTF8 & qid=1313941026 & sr=8-2

 

If you don't own a kindle,  you can download an app to read any kindle book on

your pc or smart phone.  The app is free.

 

  

To: LBDcaregivers

Sent: Sunday, August 21, 2011 6:40 AM

Subject: Question re neurologist visit

 

Hi all.

Dad had his angioplasty/heart stenting done this week and so far we've

seen a good improvement. Not great because, let's face it, he still has

very little functioning in the way of coronary arteries but one is now

unblocked and stented so he seems to have a little more energy and isn't

sleeping about 20 hours a day. We're pleased so far. I took everyone's

advice and made up bright yellow handouts for the hospital staff. They

only took one but they did keep it with his notes so that was something.

He ripped his cannula out twice (I would say very typical LBD behaviour)

and thought that was quite funny! Anyway, onwards and upwards.

My question now is, the neurologist who diagnosed Dad's LBD earlier this

year (Dr Simon at RPA Hospital in Sydney) is seeing Dad in a

couple of weeks for the first time since Dad's diagnosis. Dr

actually specialises in Parkinson's which is why we went to see him in

the first place but obviously recognised LBD when he saw it. I'm

wondering if anyone can suggest anything for me to ask when we see him

this time? Sydney is over two hours' drive away and I have no idea how

long it will be till we see Dr again and I don't want to miss the

opportunity to ask what I need to ask, particularly in relation to

medication. At the moment, the only difference to Dad's meds from when

he was diagnosed is that one of the PD drugs was reduced and then ceased

and his other PD drug has been reduced but he is still on a lower dose

which has resulted in Dad's tremors increasing a little. Dr

mentioned last time that Dad may be able to try a drug used to treat

Alzheimer's. I have no idea yet what that drug is. Has anyone heard of

such a thing and/or had any experience with it?

Thanks all. I'm so glad to be here.

Tania...

[Guest guest]

Thanks , I think I may just do that.

Tania

>

> If I might suggest a book called, " The caregivers guide to Lewy body demetia "

by Hellen Buel Whitworth.  It covers all these types of issues and several

more.  It's available on Amazon in both hard copy and kindle.  I'm currently

reading it and it's been extremely informative.

>

http://www.amazon.com/Caregivers-Guide-Lewy-Dementia-ebook/dp/B004Q9SVF2/ref=sr_\

1_2?ie=UTF8 & qid=1313941026 & sr=8-2

>  

> If you don't own a kindle,  you can download an app to read any kindle book

on your pc or smart phone.  The app is free.

>  

>   

>

>

> To: LBDcaregivers

> Sent: Sunday, August 21, 2011 6:40 AM

> Subject: Question re neurologist visit

>

>

>  

>

>

> Hi all.

>

> Dad had his angioplasty/heart stenting done this week and so far we've

> seen a good improvement. Not great because, let's face it, he still has

> very little functioning in the way of coronary arteries but one is now

> unblocked and stented so he seems to have a little more energy and isn't

> sleeping about 20 hours a day. We're pleased so far. I took everyone's

> advice and made up bright yellow handouts for the hospital staff. They

> only took one but they did keep it with his notes so that was something.

> He ripped his cannula out twice (I would say very typical LBD behaviour)

> and thought that was quite funny! Anyway, onwards and upwards.

>

> My question now is, the neurologist who diagnosed Dad's LBD earlier this

> year (Dr Simon at RPA Hospital in Sydney) is seeing Dad in a

> couple of weeks for the first time since Dad's diagnosis. Dr

> actually specialises in Parkinson's which is why we went to see him in

> the first place but obviously recognised LBD when he saw it. I'm

> wondering if anyone can suggest anything for me to ask when we see him

> this time? Sydney is over two hours' drive away and I have no idea how

> long it will be till we see Dr again and I don't want to miss the

> opportunity to ask what I need to ask, particularly in relation to

> medication. At the moment, the only difference to Dad's meds from when

> he was diagnosed is that one of the PD drugs was reduced and then ceased

> and his other PD drug has been reduced but he is still on a lower dose

> which has resulted in Dad's tremors increasing a little. Dr

> mentioned last time that Dad may be able to try a drug used to treat

> Alzheimer's. I have no idea yet what that drug is. Has anyone heard of

> such a thing and/or had any experience with it?

>

> Thanks all. I'm so glad to be here.

>

> Tania...

>

>

>

>

>

[Guest guest]

My mom has been on a combination of very-low-dose Aricept and Namenda

for several years. The difference her level of cognition, as well as the

return of her personality, when she was started on these drugs (Aricept

first, Namenda later) was astounding. I often say they gave my mother

back to me for a time. She is also on Seroquel (not much, 75mg/day

divided) which helps with her hallucinations and delusions.

Exelon is another alzheimer's drug that is sometimes used in LBD.

Whichever drug is used, starting just one at a time, and with the lowest

smallest dose, is they key in LBD. And not all of these drugs are

well-tolerated in LBDers, so it is trial and error (one of the reasons

it is important to just start one at a time)...

I don't know a whole lot about a lot of drugs, and tend to do my

research on them only as they apply to my own mother's regimen...but if

this little bit helps you then there it is .

--

His,

Sherry

daughter/guardian of , dx 4/09 with LBD, living in a nearby NH

> Hi all.

>

> Dad had his angioplasty/heart stenting done this week and so far we've

> seen a good improvement. Not great because, let's face it, he still has

> very little functioning in the way of coronary arteries but one is now

> unblocked and stented so he seems to have a little more energy and isn't

> sleeping about 20 hours a day. We're pleased so far. I took everyone's

> advice and made up bright yellow handouts for the hospital staff. They

> only took one but they did keep it with his notes so that was something.

> He ripped his cannula out twice (I would say very typical LBD behaviour)

> and thought that was quite funny! Anyway, onwards and upwards.

>

> My question now is, the neurologist who diagnosed Dad's LBD earlier this

> year (Dr Simon at RPA Hospital in Sydney) is seeing Dad in a

> couple of weeks for the first time since Dad's diagnosis. Dr

> actually specialises in Parkinson's which is why we went to see him in

> the first place but obviously recognised LBD when he saw it. I'm

> wondering if anyone can suggest anything for me to ask when we see him

> this time? Sydney is over two hours' drive away and I have no idea how

> long it will be till we see Dr again and I don't want to miss the

> opportunity to ask what I need to ask, particularly in relation to

> medication. At the moment, the only difference to Dad's meds from when

> he was diagnosed is that one of the PD drugs was reduced and then ceased

> and his other PD drug has been reduced but he is still on a lower dose

> which has resulted in Dad's tremors increasing a little. Dr

> mentioned last time that Dad may be able to try a drug used to treat

> Alzheimer's. I have no idea yet what that drug is. Has anyone heard of

> such a thing and/or had any experience with it?

>

> Thanks all. I'm so glad to be here.

[Guest guest]

Tania - Aricept & Exelon are the first line of treatment for LBD and are the

same meds used for Alzheimer's patients. I would assume one of these is what

your neurologist was referring to. Please note, as with all meds, that people

with LBD should be started on a low dose and then can be increased slowly. If

your Dad is taking Sinemet or any other Parkinson's med (carbidopa, etc.), also

be careful that it is given at a very low dose and people with LBD (generally)

cannot tolerate higher doses of Parkinson's meds. It's actually not as

important to know what to ask as to be pro-active and be sure nothing wrong is

given to your Dad. I trust that you will have plenty of your own questions that

pertain particularly to your Dad and will do well. Norma