Re: Introduction and follow up to Ron's post

[Guest guest]

Dear , Please do stay here with us.One bad apple cannot spoil the whole

bunch.Please know that we will be the lucky ones to have you here and for me

personally, I would like to say that it is an honor to meet you sir.Sincere

hopes that you will stay with us for our benefit Ron

Introduction and follow up to Ron's post

Hello to all......... ....after reading Ron's post, I'm not sure if I should be

a member of this group or not. If I could help caregivers in any little way,

then perhaps it is.

I am a 59 yr old forensic psychiatrist. I was diagnosed with Lewy Body Disease 1

year ago. My life has changed totally. I practiced in CA but had to take medical

disability and have voluntarily surrendered my medical license. That was a big

blow after all the years of work to obtain it. Fortunately, I caused no harm to

patients.

My wife and I had to sell our home in CA and have moved back to PA to our

'roots' where we have family and friends for support.

I am now on Namenda and Aricept and notice many positive results. I just had

another SPECT scan which showed severe neurogenerative changes. It becomes more

difficult to remain in denial especially when I look at the scans. I guess I've

always been able to justify all my gradual deterioration over the years with

other 'things.'

I could go on and on but nothing I say is new to anyone. I'm still trying to

find a new 'me' and an identity other than being a physician. I hope to be help

to help others as a victim of this disease. I'm not sure just how to do that

yet.

When I trained, we didn't have SPECT scans. So I'm no expert on interpreting

them. Other than having them done to check for plateauing out versus looking at

progressive changes, they help me the most to have to accept that I do have a

disease and that I must accept it and deal with it on a daily basis.

Fortunately, I am still cognizant enought to be able to verbalize just how

frustrating it is not to be able to remember little things, to find difficulty

finding words when I speak, to feel the shame and embarrassment when I forget

where I am and get people mixed up in my mind.

So, to all caregivers. Thanks for being patient with us and for just being nice

to us and making us still feel important in life. To me, this is the major

battle I currently have. I still need to feel important to others and to

society. I don't feel that anymore. It is a loss.

[Guest guest]

Hello ,

Welcome to the group. I hope that we can be of some use to you too.

I was saddened to read that you no longer feel important to others and to

society. Have you thought about perhaps creating a blog where you can share

your thoughts/experiences with LBD? I'm sure it would prove helpful to others

and in this way you could satisfy your very valid need to feel connected to life

and a contributing member of society.

Best,

Courage

(Please disregard the drama that is currently causing as it has been

fixed and has never happened her before).

Introduction and follow up to Ron's post

Hello to all.............after reading Ron's post, I'm not sure if I should be

a member of this group or not. If I could help caregivers in any little way,

then perhaps it is.

I am a 59 yr old forensic psychiatrist. I was diagnosed with Lewy Body Disease

1 year ago. My life has changed totally. I practiced in CA but had to take

medical disability and have voluntarily surrendered my medical license. That was

a big blow after all the years of work to obtain it. Fortunately, I caused no

harm to patients.

My wife and I had to sell our home in CA and have moved back to PA to our

'roots' where we have family and friends for support.

I am now on Namenda and Aricept and notice many positive results. I just had

another SPECT scan which showed severe neurogenerative changes. It becomes more

difficult to remain in denial especially when I look at the scans. I guess I've

always been able to justify all my gradual deterioration over the years with

other 'things.'

I could go on and on but nothing I say is new to anyone. I'm still trying to

find a new 'me' and an identity other than being a physician. I hope to be help

to help others as a victim of this disease. I'm not sure just how to do that

yet.

When I trained, we didn't have SPECT scans. So I'm no expert on interpreting

them. Other than having them done to check for plateauing out versus looking at

progressive changes, they help me the most to have to accept that I do have a

disease and that I must accept it and deal with it on a daily basis.

Fortunately, I am still cognizant enought to be able to verbalize just how

frustrating it is not to be able to remember little things, to find difficulty

finding words when I speak, to feel the shame and embarrassment when I forget

where I am and get people mixed up in my mind.

So, to all caregivers. Thanks for being patient with us and for just being

nice to us and making us still feel important in life. To me, this is the major

battle I currently have. I still need to feel important to others and to

society. I don't feel that anymore. It is a loss.

[Guest guest]

Welcome Dr. ,

Glad you are here and one of the first things I hope we can help you with is no

guilt or shame. You wouldn't feel that way if you had a broken leg... And this

isn't anything you are " doing " and thus can change just because you know what it

is.

It helps many of us to have you here as it better helps cgs understand what the

experience is from their Loved Ones (LOs) point of view.

And maybe we can give you some pointers from our experience of caring for

someone with this disease. I can't imagine what this is for someone who has

been on the medical end of this for most of your life. Hang in there. It is

not an easy road for anyone.

Hugs,

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.

Introduction and follow up to Ron's post

Hello to all.............after reading Ron's post, I'm not sure if I should be a

member of this group or not. If I could help caregivers in any little way, then

perhaps it is.

I am a 59 yr old forensic psychiatrist. I was diagnosed with Lewy Body Disease 1

year ago. My life has changed totally. I practiced in CA but had to take medical

disability and have voluntarily surrendered my medical license. That was a big

blow after all the years of work to obtain it. Fortunately, I caused no harm to

patients.

My wife and I had to sell our home in CA and have moved back to PA to our

'roots' where we have family and friends for support.

I am now on Namenda and Aricept and notice many positive results. I just had

another SPECT scan which showed severe neurogenerative changes. It becomes more

difficult to remain in denial especially when I look at the scans. I guess I've

always been able to justify all my gradual deterioration over the years with

other 'things.'

I could go on and on but nothing I say is new to anyone. I'm still trying to

find a new 'me' and an identity other than being a physician. I hope to be help

to help others as a victim of this disease. I'm not sure just how to do that

yet.

When I trained, we didn't have SPECT scans. So I'm no expert on interpreting

them. Other than having them done to check for plateauing out versus looking at

progressive changes, they help me the most to have to accept that I do have a

disease and that I must accept it and deal with it on a daily basis.

Fortunately, I am still cognizant enought to be able to verbalize just how

frustrating it is not to be able to remember little things, to find difficulty

finding words when I speak, to feel the shame and embarrassment when I forget

where I am and get people mixed up in my mind.

So, to all caregivers. Thanks for being patient with us and for just being nice

to us and making us still feel important in life. To me, this is the major

battle I currently have. I still need to feel important to others and to

society. I don't feel that anymore. It is a loss.

[Guest guest]

Dear ,

Please stay with us - there is so much we can learn from you. I'm

glad you have moved closer to other loved ones - that is important.

I'm grateful that are you are able to write about your experience -

we had no idea what was going on with my Mom for a while (we chalked

a lot of it up to good old Jewish guilt), and then, in time, all the

pieces fell into place. My Mom was (and still is) on aricept and

Namenda was added about a year or two ago - there were cognitive

improvements, but when she started the namenda, she started to sleep

more - who knows if it was the meds or the progression of the

disease. Her word retrieval was horrible, and she could barely put a

sentence together, and then the doc took her off the paxil and she

has shown a lot of improvement with zoloft - she can put together

sentences again.

Good luck with your journey - I hope that maybe a clinical trial will

become available soon.

Regards,

Helene

>

> Hello to all.............after reading Ron's post, I'm not sure if

I should be a member of this group or not. If I could help caregivers

in any little way, then perhaps it is.

>

> I am a 59 yr old forensic psychiatrist. I was diagnosed with Lewy

Body Disease 1 year ago. My life has changed totally. I practiced in

CA but had to take medical disability and have voluntarily

surrendered my medical license. That was a big blow after all the

years of work to obtain it. Fortunately, I caused no harm to

patients.

>

> My wife and I had to sell our home in CA and have moved back to PA

to our 'roots' where we have family and friends for support.

>

> I am now on Namenda and Aricept and notice many positive results. I

just had another SPECT scan which showed severe neurogenerative

changes. It becomes more difficult to remain in denial especially

when I look at the scans. I guess I've always been able to justify

all my gradual deterioration over the years with other 'things.'

>

> I could go on and on but nothing I say is new to anyone. I'm still

trying to find a new 'me' and an identity other than being a

physician. I hope to be help to help others as a victim of this

disease. I'm not sure just how to do that yet.

> When I trained, we didn't have SPECT scans. So I'm no expert on

interpreting them. Other than having them done to check for

plateauing out versus looking at progressive changes, they help me

the most to have to accept that I do have a disease and that I must

accept it and deal with it on a daily basis. Fortunately, I am still

cognizant enought to be able to verbalize just how frustrating it is

not to be able to remember little things, to find difficulty finding

words when I speak, to feel the shame and embarrassment when I forget

where I am and get people mixed up in my mind.

>

> So, to all caregivers. Thanks for being patient with us and for

just being nice to us and making us still feel important in life. To

me, this is the major battle I currently have. I still need to feel

important to others and to society. I don't feel that anymore. It is

a loss.

>

>

>

>