Re: Dr. /Introduction and follow up to Ron's post

[Guest guest]

Welcome Dr. ,

Your being here will help us all more than you know, both caregiver and our

Loved One with LBD; you are very important to us here. We are here to help you

in anyway we can and you can help us, because you are dealing with the illness

personally and can help us understand our Loved Ones and what they may be

experiencing.

You have probably heard of the book, " Life in the Balance " by Graboys MD,

another doctor experiencing LBD, and having that same feeling of loss to feel

important to others and to society. If you have not read the book, I highly

recommend it. I identified with it through being my husband's caregiver and my

experiences with him.

I'm glad you have found us and hope we can be as much help to you as you will be

to us.

Jan Colello

Lafayette, California (San Francisco Bay Area)

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.