RE: Membership of this Group

[Guest guest]

I grieve for you with your diagnosis, but what a wonderful opportunity

for all of us to learn from you. No matter how much we love and care

for someone with LBD, we're still outsiders looking in. My only fear

would be that you might find the descriptions of some of the details

of the later stages of the disease disheartening. I think that you

would find much good information about possible medications and

therapies.

Please contribute whenever you are comfortable doing so. We look

forward to your participation.

Ann Hilgeman, list owner

[Guest guest]

Dear , Welcome to the group. I am so sorry about your diagnosis, but very happy that you have found us. My husband, 62, though still in the early stages, cannot think or speak clearly enough to tell me what it's like for him. I would consider it a real gift to see and feel from your perspective!

Mai-Liis

[Guest guest]

I agree with Ann, Mai-Liis, and others - you are most welcome. Perhaps

there are other patients on the list as well, even if we are not aware of

it. Please lean on us - we are good at propping each other up!

Welcome,

Christie

At 21:16 8/9/01 -0000, you wrote:

> I have

> been diagnosed as having early stage onset Lewy Body Dementia (DLB).

>

> Cay suggested I might like to join this group but it worries me

> slightly that you may be just a support group for Lewy Body patient

> carers and not be interested in the patients themselves getting

> involved.

>

> I would greatly appreciate you guidance and comments.

>

> Thank you

>

> Regards

>

>

>

>

>

[Guest guest]

Dear Mai-Liis

I will try and contribute as much as I can, fortunately my ability at this time to think and type on my computer is not badly impaired. I do have many other problematic aspects of the disease, I cannot physically write, my hallucinations are very bad, memory is as you would expect very poor and, surprisingly I've lost my long term memory as well. Sometime a trigger helps to put things back into what I call my intermediate memory. (This sits between my short and long term memory and if I can lodge events in there I keep them for quite a while).

My Exelon is absolutely marvellous and it keeps me on an even keel.

So for now thank you again for your warm welcome

Kind regards

P.S. My spelling is now very poor but I blame my computer [lol]

======================================My name is J S The following are my e-mailspashley@... [Preferred]pjsashley@...p.ashley1@...======================================

-----Original Message-----From: Mai-Liis Sent: 09 August 2001 22:37To: LBDcaregivers Subject: Re: Membership of this Group

Dear , Welcome to the group. I am so sorry about your diagnosis, but very happy that you have found us. My husband, 62, though still in the early stages, cannot think or speak clearly enough to tell me what it's like for him. I would consider it a real gift to see and feel from your perspective!

Mai-Liis

[Guest guest]

Dear Ann

Don't worry about my view of my long term prospects, I'm

fully aware of what's in store. Two days ago I had my

second visit, with my wife/carer, Ann, to a local nursing

home where we both 'talk' to patients in the last stages of

the disease. We find this experience fulfilling, not

frightening. The Nursing Manager and I are about to write

an article on the whole subject.

As for other matters, I'm lucky, I'm on Exelon

(Rivastigmine) which holds me as stable as you can get at

the moment. I'm also a very active member of the

Alzheimer's Society here in the UK.

Never worry on my account I can talk about every aspect of

my disease from now until my passing without getting at all

upset.

Regards

======================================

My name is J S

The following are my e-mails

pashley@... [Preferred]

pjsashley@...

p.ashley1@...

======================================

> Re: Membership of this Group

>

>

> I grieve for you with your diagnosis, but what a

> wonderful opportunity

> for all of us to learn from you. No matter how

> much we love and care

> for someone with LBD, we're still outsiders

> looking in. My only fear

> would be that you might find the descriptions of

> some of the details

> of the later stages of the disease disheartening.

> I think that you

> would find much good information about possible

> medications and

> therapies.

>

> Please contribute whenever you are comfortable

> doing so. We look

> forward to your participation.

>

> Ann Hilgeman, list owner

>

>

>

[Guest guest]

, we are lucky to have you with us, indeed! I am glad that you find Exelon helpful. My husband and I feel the same about Aricept. My husband's daytime hallucinations only lasted a few months, but the night stuff kept him and me from sleeping. He is now on 75 mg. of Serequel, with good results. He sleeps through most of it. I would like to hear about your experiences with this aspect....IF you feel like writing about it.

My husband sure could not write a well thought out paragraph like you have. In some respects, his memory is better than mine, but he has no ability to make logical relationships, weigh decisions, plan, etc.

Mai-Liis

[Guest guest]

Thank you for your courage to participate in our group. While my husband is not

fully aware of all that LBD involves, he does try to do everything he can to

help himself. He takes exelon too and it has really made a difference. Since

we are on a higher dose, he only usually needs a half seroquel tablet (12.5 mg)

a day for hallucinations now. He had been up to 50 mg about 4 months ago. He

kind of knows when he's going to have problems so I pay close attention when he

says " I don't feel well " or when he says he wants to go home. To me it's like

he gets overwhelmed with everything going on around him and it starts not to

make sense for him - it seems to help if I get him to a quiet place, even in the

car with just me and him. As you can write, my husband can still read his music

and play his piano, for which I'm thankful. -lula

- In LBDcaregivers@y..., " " <p.ashley1@b...> wrote:

> Dear Ann

>

> Don't worry about my view of my long term prospects, I'm

> fully aware of what's in store. Two days ago I had my

> second visit, with my wife/carer, Ann, to a local nursing

> home where we both 'talk' to patients in the last stages of

> the disease. We find this experience fulfilling, not

> frightening. The Nursing Manager and I are about to write

> an article on the whole subject.

>

> As for other matters, I'm lucky, I'm on Exelon

> (Rivastigmine) which holds me as stable as you can get at

> the moment. I'm also a very active member of the

> Alzheimer's Society here in the UK.

>

> Never worry on my account I can talk about every aspect of

> my disease from now until my passing without getting at all

> upset.

>

> Regards

>

>

>

> ======================================

> My name is J S

>

> The following are my e-mails

>

> pashley@o... [Preferred]

> pjsashley@b...

> p.ashley1@b...

>

> ======================================

>

> > Re: Membership of this Group

> >

> >

> > I grieve for you with your diagnosis, but what a

> > wonderful opportunity

> > for all of us to learn from you. No matter how

> > much we love and care

> > for someone with LBD, we're still outsiders

> > looking in. My only fear

> > would be that you might find the descriptions of

> > some of the details

> > of the later stages of the disease disheartening.

> > I think that you

> > would find much good information about possible

> > medications and

> > therapies.

> >

> > Please contribute whenever you are comfortable

> > doing so. We look

> > forward to your participation.

> >

> > Ann Hilgeman, list owner

> >

> >

> >

[Guest guest]

Dear

A big welcome to you! You sound most courageous and aware of your disease.

I am so glad that Exelon is helping you---how is your movement?

My husband is also on Exelon, 4.5 mgs. He also takes Sinemet 4xday to aid

with his walking which has become increasingly difficult this last year. I

find the " spatial " aspect of this disease is a challenge for him -where the

chair is, where to sit etc. Locating the arms of chairs helps to " place "

him.

Hope the group is a help for you and for your Ann

~Marilyn

p.ashley1@... wrote:

> My name is a 65 year old male living in the UK. I have

> been diagnosed as having early stage onset Lewy Body Dementia (DLB).

>

> Cay suggested I might like to join this group but it worries me

> slightly that you may be just a support group for Lewy Body patient

> carers and not be interested in the patients themselves getting

> involved.

>

> I would greatly appreciate you guidance and comments.

>

> Thank you

>

> Regards

>

>

>

>

>

[Guest guest]

--since some of us who are the children of patients fear that we

may someday be the patients, we could hardly turn you away. In fact,

I'm curious about your symptoms and how they could tell what you had

in the early stages if you don't mind saying. Here in America

patients are typically far along before diagnosed.

> My name is a 65 year old male living in the UK. I

have

> been diagnosed as having early stage onset Lewy Body Dementia (DLB).

>

> Cay suggested I might like to join this group but it worries me

> slightly that you may be just a support group for Lewy Body patient

> carers and not be interested in the patients themselves getting

> involved.

>

> I would greatly appreciate you guidance and comments.

>

> Thank you

>

> Regards

>

>

[Guest guest]

, I have created ways of dealing

with them most of the time.

Please explain the methods of dealing with the tremors.

[Guest guest]

Dear Mai-Liis

Please forgive a brief reply tonight, I'm a bit down.

I have my hallucinations all the time during my waking hours but they are not so bad that I can't live with them. The funny thing is that I can gererally differentiate between the real and the imaginary.

At night, and I aways go to bed late 1am or 2am in the morning because I live for the day and going to bed is it's conclusion, I don't like (I'm sure you understand), I have such a large cocktail of drugs that 15 mins. after my tablets I go to sleep for 6 hours exactly. During my sleep I don't have hallucinations as such but what I call very vivid dreams , some OK, others nasty. I never wake up until 6 hours has elapsed.

My evening cocktail is made up of 14 tablets, including 20mg of epam (Valium), 1mg Risperidone, 200mg Carbamazapine, 150mg Venlafaxine, 15mg Zopiclone, 6mg of Exelon (Total per day 12mg) and 2 Heart tablets. If I feel I'm in a bad way at bedtime I have my doctors permission to supplement my epam with additional Lorazepam.

My total daily intake of tablets is 34.

I'm a walking drug store [lol]

Regards

======================================My name is J S The following are my e-mailspashley@... [Preferred]pjsashley@...p.ashley1@...======================================

-----Original Message-----From: Mai-Liis Sent: 10 August 2001 00:47To: LBDcaregivers Subject: Re: Membership of this Group

, we are lucky to have you with us, indeed! I am glad that you find Exelon helpful. My husband and I feel the same about Aricept. My husband's daytime hallucinations only lasted a few months, but the night stuff kept him and me from sleeping. He is now on 75 mg. of Serequel, with good results. He sleeps through most of it. I would like to hear about your experiences with this aspect....IF you feel like writing about it.

My husband sure could not write a well thought out paragraph like you have. In some respects, his memory is better than mine, but he has no ability to make logical relationships, weigh decisions, plan, etc.

Mai-Liis

[Guest guest]

Dear Marilyn

I'm on 12 mg of Exelon per day - maximun dose (or have I

told you all that, I cant remember [lol]}.

My spatial awareness is not bad, I stagger quite a lot and

can't always walk in a reasonable straight line. Objects

can become 2 dimensional suddenly, which is annoying, the

cup that was there one minute seems to move into the wrong

place. I also have Parkinsonian symptons in the form of the

'shakes', these come and go, I have created ways of dealing

with them most of the time.

Regards

======================================

My name is J S

The following are my e-mails

pashley@... [Preferred]

pjsashley@...

p.ashley1@...

======================================

> Re: Membership of this Group

>

>

> Dear

> A big welcome to you! You sound most courageous

> and aware of your disease.

> I am so glad that Exelon is helping you---how is

> your movement?

>

> My husband is also on Exelon, 4.5 mgs. He also

> takes Sinemet 4xday to aid

> with his walking which has become increasingly

> difficult this last year. I

> find the " spatial " aspect of this disease is a

> challenge for him -where the

> chair is, where to sit etc. Locating the arms of

> chairs helps to " place "

> him.

>

> Hope the group is a help for you and for your Ann

> ~Marilyn

>

> p.ashley1@... wrote:

>

> > My name is a 65 year old male

> living in the UK. I have

> > been diagnosed as having early stage onset Lewy

> Body Dementia (DLB).

> >

> > Cay suggested I might like to join this group

> but it worries me

> > slightly that you may be just a support group

> for Lewy Body patient

> > carers and not be interested in the patients

> themselves getting

> > involved.

> >

> > I would greatly appreciate you guidance and comments.

> >

> > Thank you

> >

> > Regards

> >

> >

> >

> >

> >

[Guest guest]

Dear Christie

Many thanks for your welcome, I have been overwhelmed by the

nice comments received from you all.

Regards

======================================

My name is J S

The following are my e-mails

pashley@... [Preferred]

pjsashley@...

p.ashley1@...

======================================

> Re: Membership of this Group

>

>

>

>

> I agree with Ann, Mai-Liis, and others - you are

> most welcome. Perhaps

> there are other patients on the list as well,

> even if we are not aware of

> it. Please lean on us - we are good at propping

> each other up!

>

> Welcome,

> Christie

>

> At 21:16 8/9/01 -0000, you wrote:

> > I have

> > been diagnosed as having early stage onset Lewy

> Body Dementia (DLB).

> >

> > Cay suggested I might like to join this group

> but it worries me

> > slightly that you may be just a support group

> for Lewy Body patient

> > carers and not be interested in the patients

> themselves getting

> > involved.

> >

> > I would greatly appreciate you guidance and comments.

> >

> > Thank you

> >

> > Regards

> >

> >

> >

> >

> >

[Guest guest]

Dear Lula

Your husband sounds very much like me except I used to play

the piano and organ, very well I'm told, I can't play a note

now, I dont even know where to start. It's very frustrating

as I love music of all kinds and I just want to play again.

Perhaps next to not being able to drive any more this is my

greatest annoyance.

Regards

======================================

My name is J S

The following are my e-mails

pashley@... [Preferred]

pjsashley@...

p.ashley1@...

======================================

> Re: Membership of this Group

> > >

> > >

> > > I grieve for you with your diagnosis, but what a

> > > wonderful opportunity

> > > for all of us to learn from you. No matter how

> > > much we love and care

> > > for someone with LBD, we're still outsiders

> > > looking in. My only fear

> > > would be that you might find the descriptions of

> > > some of the details

> > > of the later stages of the disease disheartening.

> > > I think that you

> > > would find much good information about possible

> > > medications and

> > > therapies.

> > >

> > > Please contribute whenever you are comfortable

> > > doing so. We look

> > > forward to your participation.

> > >

> > > Ann Hilgeman, list owner

> > >

> > >

> > >

[Guest guest]

Dear

If you dont mind tonight I will be brief.

The one thing that you can say for our National Health

System here in the UK is that once they get you in front of

the right consultants they are very good at their job and

bring every resource to bear on your problem.

After 4 years being treated for depression, that happened to

me I saw a first class neuologist who arranged for every

test and scan 'in the book' to be carried out on me within

2/3 weeks. The results were clear for all to see, even me,

I had dementia. With the other characteristic symptoms I

had (see other letters from me today) this made them come to

the conclusion that it was most likely to be LBD as you call

it, (we call it DLB - Demenetia with Lewy Bodies in the UK).

The only way they will ever know for sure is after my death

when they will have the opportunity to use my body for

medical research - that's my wish.

Regards

======================================

My name is

The following are my e-mails

pashley@... [Preferred]

pjsashley@...

p.ashley1@...

======================================

> Re: Membership of this Group

>

>

> --since some of us who are the children of

> patients fear that we

> may someday be the patients, we could hardly turn

> you away. In fact,

> I'm curious about your symptoms and how they

> could tell what you had

> in the early stages if you don't mind saying.

> Here in America

> patients are typically far along before diagnosed.

>

>

> > My name is a 65 year old male

> living in the UK. I

> have

> > been diagnosed as having early stage onset Lewy

> Body Dementia (DLB).

> >

> > Cay suggested I might like to join this group

> but it worries me

> > slightly that you may be just a support group

> for Lewy Body patient

> > carers and not be interested in the patients

> themselves getting

> > involved.

> >

> > I would greatly appreciate you guidance and comments.

> >

> > Thank you

> >

> > Regards

> >

> >

>

>

>

[Guest guest]

wrote:

Dear Marilyn

I'm on 12 mg of Exelon per day - maximun dose (or have I

told you all that, I cant remember [lol]}.

Dear ,

I am glad that you are still "getting around" as it were. I have

noticed my husband does not read as he used to and perhaps the movement

of newsprint is occurring for him ,as your objects seem to be moving

on you.

Please feel free to ask any questions from us.

Take care,

~Marilyn

My spatial awareness is not bad, I stagger quite a lot and

can't always walk in a reasonable straight line. Objects

can become 2 dimensional suddenly, which is annoying, the

cup that was there one minute seems to move into the wrong

place. I also have Parkinsonian symptons in the form of the

'shakes', these come and go, I have created ways of dealing

with them most of the time.

Regards

======================================

My name is J S

The following are my e-mails

pashley@... [Preferred]

pjsashley@...

p.ashley1@...

======================================

> Re: Membership of this Group

>

>

> Dear

> A big welcome to you! You sound most courageous

> and aware of your disease.

> I am so glad that Exelon is helping you---how is

> your movement?

>

> My husband is also on Exelon, 4.5 mgs. He also

> takes Sinemet 4xday to aid

> with his walking which has become increasingly

> difficult this last year. I

> find the "spatial" aspect of this disease is a

> challenge for him -where the

> chair is, where to sit etc. Locating the arms of

> chairs helps to "place"

> him.

>

> Hope the group is a help for you and for your Ann

> ~Marilyn

>

> p.ashley1@... wrote:

>

> > My name is a 65 year old male

> living in the UK. I have

> > been diagnosed as having early stage onset Lewy

> Body Dementia (DLB).

> >

> > Cay suggested I might like to join this group

> but it worries me

> > slightly that you may be just a support group

> for Lewy Body patient

> > carers and not be interested in the patients

> themselves getting

> > involved.

> >

> > I would greatly appreciate you guidance and comments.

> >

> > Thank you

> >

> > Regards

> >

> >

> >

> >

> >

[Guest guest]

I'll try and give you some idea of how I cope.

First my computer. I make use of the aids that are available for people with disabilities, large mouse pointer, slow mouse speed control, etc.. the keyboard is still something of a difficulty on a bad day; I can spend 30 minutes typing a few lines, but I wont let it beat me. On a very bad day I just have a rest and know that all my friends will understand. Words tend always the get miss-spelt; if it wasn't for the spell checker I'd be unreadable.

Handling drinks. I always ask for half a cup/glass of whatever I'm having and always use both hands to drink it with. Sometimes I even ask for a straw - yes with tea and coffee - I don't care what other people think, if they have a problem with it it's theirs not mine. I've got quite hardened to their type of reaction.

I carry about a special knife, fork and spoon when I'm having a bad time. These have large rounded handles so that I can grasp them much better than the normal ones. I'm sure they are available in the States etc..

I have got into the habit of using two hands for many thing where 'normal' people who use one, its second nature now.

Reading a newspaper or magazine is always done on a desk or table so I don't have to hold it.

I cant write anymore, only in capitals on a very good day; but I get by. My wife laughs when I can still sign cheques [lol]

The worst thing I experience is not the routine shakes but the involuntary spasms and there is absolutely nothing I can do with them.

I went to a meeting some time ago when I had my cup of coffee. I was drinking it as usual with two hands when I had a spasm; the remaining contents of the coffee went up into the air and poured down on the front of the light cream trousers I was wearing. Shortly afterwards I was asked to stand-up and address the audience and , yes, you've got it, on this occasion I was embarrassed, but I can laugh about it now [lol].

Kind regards

======================================My name is J S The following are my e-mailspashley@... [Preferred]pjsashley@...p.ashley1@...======================================

-----Original Message-----From: buev@... Sent: 11 August 2001 01:14To: LBDcaregivers Subject: Re: Membership of this Group

, I have created ways of dealing with them most of the time. Please explain the methods of dealing with the tremors.

[Guest guest]

Dear Marilyn

Thanks for your reply. Its interesting you should mention reading; I reckon I read a book six times before I even start to absorbs it let alone commit anything to what I regard as my intermediate memory (that bit that still works). By the time I get down to the bottom of a page I have forgotten what I read at the top and so I have to start again, absorbing a little bit each time. The same goes for newspapers etc..

When I'm writing an e-mail like this one I'm forever referring back to previous paragraphs because I can easily lose track of what I'm on about.

Never the less I don't give up I keep trying that's the only thing to do

Regards

======================================My name is J S The following are my e-mailspashley@... [Preferred]pjsashley@...p.ashley1@...======================================

Re: Membership of this Group > > > Dear > A big welcome to you! You sound most courageous > and aware of your disease. > I am so glad that Exelon is helping you---how is > your movement? > > My husband is also on Exelon, 4.5 mgs. He also > takes Sinemet 4xday to aid > with his walking which has become increasingly > difficult this last year. I > find the "spatial" aspect of this disease is a > challenge for him -where the > chair is, where to sit etc. Locating the arms of > chairs helps to "place" > him. > > Hope the group is a help for you and for your Ann > ~Marilyn > > p.ashley1@... wrote: > > > My name is a 65 year old male > living in the UK. I have > > been diagnosed as having early stage onset Lewy > Body Dementia (DLB). > > > > Cay suggested I might like to join this group > but it worries me > > slightly that you may be just a support group > for Lewy Body patient > > carers and not be interested in the patients > themselves getting > > involved. > > > > I would greatly appreciate you guidance and comments. > > > > Thank you > > > > Regards > > > > > > > > > >

[Guest guest]

wrote:

Dear MarilynThanks

for your reply. Its interesting you should mention reading; I reckon

I read a book six times before I even start to absorbs it let alone commit

anything to what I regard as my intermediate memory (that bit that still

works). By the time I get down to the bottom of a page I have forgotten

what I read at the top and so I have to start again, absorbing a little

bit each time. The same goes for newspapers etc..When

I'm writing an e-mail like this one I'm forever referring back to previous

paragraphs because I can easily lose track of what I'm on about.Never

the less I don't give up I keep trying that's the only thing to doRegards

Well, , I think you are doing a remarkable job. I find your

information informative and very succint.

Take care,

~Marilyn

======================================

My name is J S

The following are my e-mails

pashley@... [Preferred]

pjsashley@...

p.ashley1@...

======================================

-----Original

Message-----

From: Marilyn

Sent: 11 August 2001 05:11

To: LBDcaregivers

Subject: Re:

Membership of this Group

wrote:

Dear Marilyn

I'm on 12 mg of Exelon per day - maximun dose (or have I

told you all that, I cant remember [lol]}.

Dear ,

I am glad that you are still "getting around" as it were. I have

noticed my husband does not read as he used to and perhaps the movement

of newsprint is occurring for him ,as your objects seem to be moving

on you.

Please feel free to ask any questions from us.

Take care,

~Marilyn

My spatial awareness is not bad, I stagger quite a lot and

can't always walk in a reasonable straight line. Objects

can become 2 dimensional suddenly, which is annoying, the

cup that was there one minute seems to move into the wrong

place. I also have Parkinsonian symptons in the form of the

'shakes', these come and go, I have created ways of dealing

with them most of the time.

Regards

======================================

My name is J S

The following are my e-mails

pashley@... [Preferred]

pjsashley@...

p.ashley1@...

======================================

> Re: Membership of this Group

>

>

> Dear

> A big welcome to you! You sound most courageous

> and aware of your disease.

> I am so glad that Exelon is helping you---how is

> your movement?

>

> My husband is also on Exelon, 4.5 mgs. He also

> takes Sinemet 4xday to aid

> with his walking which has become increasingly

> difficult this last year. I

> find the "spatial" aspect of this disease is a

> challenge for him -where the

> chair is, where to sit etc. Locating the arms of

> chairs helps to "place"

> him.

>

> Hope the group is a help for you and for your Ann

> ~Marilyn

>

> p.ashley1@... wrote:

>

> > My name is a 65 year old male

> living in the UK. I have

> > been diagnosed as having early stage onset Lewy

> Body Dementia (DLB).

> >

> > Cay suggested I might like to join this group

> but it worries me

> > slightly that you may be just a support group

> for Lewy Body patient

> > carers and not be interested in the patients

> themselves getting

> > involved.

> >

> > I would greatly appreciate you guidance and comments.

> >

> > Thank you

> >

> > Regards

> >

> >

> >

> >

> >

[Guest guest]

> wrote: First my computer. I make use of the aids that are

>available for people with disabilities, large mouse pointer, slow mouse

>speed control, etc.. the keyboard is still something of a difficulty on a

>bad day; I can spend 30 minutes typing a few lines, but I wont let it

>beat me.

, I told a friend who has Parkinson about you and he, who use to type

90 words per minute, recommended a computer program that has Voice

Recognition. There are a few out right now and they are quite

sophisticated, able to " learn " your speech and correct mistakes. I don't

remember which one he uses but if you're interested, I'll ask.

Imelda

[Guest guest]

Many thanks Imelda. As I'm an old hand computer

professional, I have all the latest bits and pieces of

software, and, yes I also use IBM Via Voice or Dragon

Naturally Speaking Voice Recognition software, which are the

two main products most people refer to. They certainly have

their place but also bring with them their own set of

frustrations which are sometimes equally as difficult for

people like us to combat. I don't mean this in a derogatory

way but people with Parkinson's disease and people with LBD,

with Parkinsonian like symptoms, do not have the same

'trouble set'.

Regards

======================================

My name is J S

The following are my e-mails

pashley@... [Preferred]

pjsashley@...

p.ashley1@...

======================================

> RE: Membership of this Group

>

>

> > wrote: First my computer. I make use

> of the aids that are

> >available for people with disabilities, large

> mouse pointer, slow mouse

> >speed control, etc.. the keyboard is still

> something of a difficulty on a

> >bad day; I can spend 30 minutes typing a few

> lines, but I wont let it

> >beat me.

>

> , I told a friend who has Parkinson about

> you and he, who use to type

> 90 words per minute, recommended a computer

> program that has Voice

> Recognition. There are a few out right now and

> they are quite

> sophisticated, able to " learn " your speech and

> correct mistakes. I don't

> remember which one he uses but if you're

> interested, I'll ask.

> Imelda

>

>

>

>

>

>

[Guest guest]

difference between Parkinsons and LBD with Parkinsonian like symptoms

Sorry to butt in but the main difference is that the doctor fears the meds that will /might alleviate the Parkinson problems will wreak havoc with the LBD.

Ev

[Guest guest]

--I'm interested in exactly what you've noticed about the

difference between Parkinsons and LBD with Parkinsonian like symptoms

(see below) Can you please spell it out for me?

> I don't mean this in a derogatory

> way but people with Parkinson's disease and people with LBD,

> with Parkinsonian like symptoms, do not have the same

> 'trouble set'.

>

> Regards

>

>

>

[Guest guest]

Whilst Ev makes some interesting points, I understand the

different terminology to be interpreted as meaning

Parkinson's Disease is a disease in itself, unrelated to any

other, and not necessarily terminal. Parkinsonian is a

reference to features that are Parkinson like in similarity

but don't stem from the same basic problem.

Ev's point therefore follows on that if the meds for

Parkinson's are improved to a point where it is almost

'cured' it certainly doesn't follow that this will have any

effect whatsoever on the similar symptoms shown in some LBD

patients. If LBD patients have been on Parkinson meds then

you could argue, as Ev does, that their lot will be much

worse.

This is my understanding to date. My doctors wont give me

any of the controlling Parkinson Disease drugs for this

reason.

Regards

======================================

My name is J S

The following are my e-mails

pashley@... [Preferred]

pjsashley@...

p.ashley1@...

======================================

> Re: Membership of this Group

>

>

>

> --I'm interested in exactly what you've

> noticed about the

> difference between Parkinsons and LBD with

> Parkinsonian like symptoms

> (see below) Can you please spell it out for me?

>

> > I don't mean this in a derogatory

> > way but people with Parkinson's disease and

> people with LBD,

> > with Parkinsonian like symptoms, do not have the same

> > 'trouble set'.

> >

> > Regards

> >

> >

> >

>

>

>

>

[Guest guest]

Dear ,

Like Ann, I grieve for you for your diagnosis and am also concerned that you

might find descriptions of the latter stages of the illness disheartening.

However, I also agree with her and others that you should feel so welcome here.

I am another who can't quite " get under my husband's skin " to understand what he

is experiencing and would welcome your input. And be glad to offer you support

through your ordeal. Welcome to our " family. "

Cheryl