la:

[Guest guest]

la:

My family is also Italian. We live in Toronto, Canada. My parents

emigrated in 1958 and have lived here ever since then.

Let me begin by telling you that your English is very good - much

better than my Italian for sure.

I'm sorry that your dad was diagnosed with LBD but glad that he's

benefitted so much for the medication. When I read how you were able

to see your father greet you at Christmas by standing up, it brought

tears to my eyes.

You're absolutely right - in so many ways LBD is worse than

Alzeheimers but having him properly diagnosed means less pain and a

better life for our loved ones. I'm so grateful for the fact that my

dad was diagnosed. As bad as he is now, he would be really horrible

if we were still unsure as to what was wrong with him.

My dad's sister in Italy (they live in Rome) also has LBD. What

is " LBD " in Italian? My mother's forgotten what it was my aunt was

diagnosed with and we want to be sure it's the same thing as what my

dad has.

la, I hope you'll find this site very informative. I know

I've benefitted tremendously by being part of this group. I truly

think the people here know so much more about this horrible disease

than many doctors who remain unaware of what exactly it is.

I hope your father continues to do well and that you post and let us

know how he's faring often.

Abby

[Guest guest]

Abby, Piper, Kathy, ...

Thank you very much for such a warm welcome.

I'm sorry that your dads and mothers were diagnosed with LBD.

For Abby: In Italian " LBD " is " Demenza a corpi di Lewy " , very similar

to the English name. I strongly hope your aunt has found good doctors

in Rome. My parents live in Milan. If you need I can ask the doctor

who is taking care of my dad. She might know a good one in Rome.

I'm extremely glad I found this group. I read your messages for a

couple of days before I wrote and I see that people here are

wonderfully supportive and willing to help each other. This means a

lot, because often my family and I felt alone against this illness.

My father started doing well after the last summer. We had a terribly

hot summer in Italy, and he suffered a lot (even with an A/C). He had

to spend the whole day in his bed, wasn't able to do anything alone

but eating, always looking at the same wall. I visited him in August

and he was not good. He used to wake up often during the night (but

he still does) and call my mum. When my mum goes to him, he's not

able to say what he needs. We think he has nightmares, or is subject

to hallucinations (now, much less fortunately), or gets scared

because he cannot recognize the room in the dark. With the excuse

that in our flat the only room with A/C was his room, I slept on a

mattress on the floor next to his bed. I remember those days as the

sweetest with my father. He called me several times during the night,

just to be sure that I was there, and then he could fall asleep

again. This is somehow curious and I'd like to know your experience:

at the beginning (two years ago, when we understood he was ill but

had still no idea what it could be) my dad was *very* aggressive and

angry with everybody. Now he is absolutely sweet and he even worries

for me or he feels sorry to call me when I'm there! If he knew it is

not an annoyance at all... I've read somewhere that often LBD

patients become aggressive. What is your experience? Maybe there is

no general pattern in LBD.

After the first 'aggressive' phase, he suffered of a severe

depression after he had a surgical operation... this is a long story.

To shorten it, the operation was not only useless, but even dangerous

for him: The doctors mixed up a hygroma with some blood in his brain.

The weeks after were awful. He walked in the hospital on his own legs

and he came back home in a stretcher. He was absent, the eyes empty,

he could start suddenly crying and then looked at me and my sister

and saying with a severe voice " Never, never let other people see you

are crying " .

After this awful hospital, we were so happy he was accepted in a

rehabilitation hospital. But there they gave him the deathblow. We

told them about the hygroma and nevertheless they forced him to stay

in a wheelchair at least 6 hours a day. He complained that he was

tired and had bad headaches, but we relied on the doctors and even

treated my poor dad as a spoilt child. The turning point was when,

through friends of friends, we found the actual doctor. She

immediately said that my father must lie down in the bed as long as

possible, since this was the only chance the hygroma to get

re-adsorbed! At the rehabilitation hospital they lost interest in him

and we brought him back home. He slowly started feeling better, being

less depressed and *very very* sweet. At the beginning we were very

confused about it. My father has always been a workaholic and didn't

show us his feelings. It is like if this illness allowed him to show

how tender and sweet he can be. Strange effect...

With the new medicines and when the summer was over, he was more

active. Having lunch and dinner with my mum in the kitchen was very

important for him. Then he asked to stay on the wheelchair to watch

TV, then he wanted to play cards (and he wins!), ... and on December

12 my mum called me to say that he was walking with the walker :-)

This was the greatest Christmas' present I could receive.

Sorry, I wrote a very long message... Good night to everybody.

la

[Guest guest]

Dear la:

Welcome to the group. Your story is very touching. Your dad has gone

through so many ups and downs, it is amazing that he has become so much better

now.

My dad had lbd, he passed away on August 18, 2003. He had periods of times

that he was aggressive and suspicious, right after he had a stroke. He

probably had lbd for about 9 years, but he was never diagnosed properly. We

noticed

the changes in his personality. He became very sweet, his personality was

dry and distant before lbd. That was the only positive thing about lbd, he

showed the sweet and caring part of his personality my mom always talked about.

My mom helped him a lot to maintain his abilities. He always wanted to be with

her, not leave her side at all. She read to him and he was often in a

rehabilitation program, which made him maintain some of his physical abilities.

He

was very frail, nevertheless.

I am glad you found this site. It has wonderful, supportive members and a

lot of good information. My thoughts and prayers are with you and your family.

God bless you,

Josie

[Guest guest]

Welcome Grabriella,

My Mom passed away Oct, 02. But she also had a similar experience with

hospitals your family had. She was awake and alert when she went in and

20 days later I put her in a nh and carried her out of the hospital.

They had her in Depends as she was no longer hold her urine. And the

only reason I put her into the hospital was to get her sleep meds

" adjusted. " For 3 years she had slept only every other night and I was

tired.

It took me a while to talk the nh into taking away all the meds the

Hospital MD had put her on, but she was still in a wheel chair, but

asking to go to the bathroom, wondering around and talking and enjoying

company. She lasted only one year in the nh. I have a very small home

and wheel chairs don't work very well here. And I was at the nh feeding

her every meal and could sleep at night. If she was up a the nh, they

had staff that were up anyway.

The dumb MD at the hospital responded to me when I asked about meds,

" You treat all dementia the same. " I had been here for a while and

although I didn't have a Diagnosis of LBD, I knew from others here that

all Dementia isn't treated the same.

So welcome and keep reading and learning. Glad you found an MD who can

help. A good one should work with you.

Donna

[Guest guest]

Thanks for telling me what LBD is in Italian. My aunt has had the

illness for 7 years but she was diagnosed with Morbid Alzeheimers.

Given what I've read about so many loved ones on this site and given

what I've seen of this disease in my own father, I think she's been

misdiagnosed. However, she has been unable to move for the past two

years and she hasn't spoken in almost that long as well. Yesterday,

we learned she's no longer swallowing - she clearly is near the end

now and, as her family put it, that's a blessing in her case.

My own father also became very, very sweet once this disease began to

take it's toll on him. He rarely argues anymore and is a bit more

open (not much) to having people help him and do things for him. My

father was never very aggressive however but he did react with

aggression to some of the incorrect medications he was given before

he was diagnosed with LBD. Nevertheless, this illness has certainly

mellowed him a bit.

What's been really hard for me to see is how my father has suffered

physically in this illness. My father worked in construction his

whole life and was a person who defined himself by his physical

prowess. Up until May of this year, he walked 2 miles a day, worked

out a bit each morning and did the gardening for most of his older

and sicker neighbours and some of our family members. He was proud

when people told him how good he looked for his age. This is why I

know what he hates most about this illness is how it's limited him

physically. He experiences increasing problems with his movement and

even needs to be helped dressing at times. It's hard for me to see

as I said before but it must be hell for him to live with.

I'm so glad your father improved so vastly once you took his care

into your own hands. That is such a reward for you. I know one of

the things I appreciate throughout all of this is the tender memories

I'm forming with my dad now. It sounds like you're doing the same

thing. If nothing else, that is one positive about this entire

experience.

Abby