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Dear Dr. ,

By now I hope you know we have welcomed you with open arms. We hope

we can be a help to you. Even though this is a terrible disease, it

will help you and your family to be as prepared as possible. Because

we armed my mom with as much knowledge as possible, she is able to

tell herself when she has her awful delusions that they may well be

delusions and not real, and that helps some.

In addition, you will be able to give us a very helpful perspective.

Because of your training and education, you are able to articulate

well what is going on and what you are feeling, and this will be

extremely helpful to us as caregivers. Write as much as you can

while you can. You might even think about writing an article or even

a small book on LBD from your perspective. It could at least be

posted free on the LBD website if you don't want to publish it.

Finally, work at internalizing and personalizing for yourself the

value of every human being, whether or not that person seems to be

able to " contribute " . My mother blesses me every time I see her, in

spite of the fact that she can no longer work, dress herself, even

take herself to the bathroom. Her loving spirit is the most

important thing she ever had to give, and it will live on after her

body ceases to breathe. You will always have value.

Gurganus

>

> 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.

>

>

>

>

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