Lewy Body

[doris]

Hi Every one
We went to the hospital yesterday and was diagnosed with Lewy body dementia.I am glad that i now know what i am dealing with but am frightened of the out come. The info i have read give the average of 7 years for the disease from the start of the symtoms. I can't remember how long we been dealing with all different gradual symptoms as we didn't know what was wrong.It seems to have been years on and off. What are the stages of this ?does anybody have any experince of this.
Doris

 

[Geraldine]

Dear Doris

You must be relieved at last to have a diagnosis but obviously very fearful of what is to come. Every case is different and what I can tell you about Mum might be very different fro what you experience.

My Mum first became ill in 1999 with hallucinations and poor gait and eventually died around this time last year. But like you it wasn't until she was well into the condition that I began to realise that it wasn't just the usual case of aging. She was not diagnosed with Lewy body until late 2003 (after an incorrect daignosis of Parkinsons). For the first few years she became less steady and confused only on a gradual basis but in 2003 after series of infections quickly deteriorated and a rapid deterioration in late summer meant an admission to an EMI home, she previously lived with me and my family. Her mobility stabilised a little but in Autumn she started declining again and never recoved. I know it is said the latter stage can last from 2 years onwards, Mum was around 18 months in this stage.

best wishes
Geraldine

 

[doris]

Hi Geraldine
When you say the later stage how bad was she .My friend is hallucinating on and of every fortnight and gets confused. but is ok in between for a few days. He was described with quetiapine for this, did your mother have this ??did it help.He has been diagnosed with parkinsons for 5 years now and taking madopar for this.I want to make the most of what we can if things are going to deteriate soon
sorry to be so negative but i need to know what to expect
thank you
Doris

 

[Kathleen]

Doris

I understand completely the need to know what to expect and when, but it seems there are huge variations in the symtoms and timescales, so we are all in an awful limbo and constant state of watching and waiting.

My Mum has AD with an element of vascular dementia, whatever that means and has been showing marked memory problems for about 5 years or so, her vascular episodes are few and far between, so we just have to take life as it comes from day to day.

Mum is now in the later stages, with marked loss of speech and understanding, problems with getting her to eat or drink and so on, and this could go on for several years yet. She seems happy in her own reality though and is always relaxed when we see her.

I cope by telling myself she will stay happy and one night die peacefully in her sleep, if I think too hard about the alternatives, I can't deal with it at all.

Kathleen

 

[Geraldine]

Dear Doris

by the time Mum went into the home she was completely confused and paranoid and aggressive and having hallucinations daily she had no idea where she was and the concept of home was meaningless meaning only her childhood home. She was 'off her feet' and had forgotten how to walk what to do at the toilet and was getting me up several times in the night and wanting to get up a 3 and 4 in the morning. She was not given qutepiane until the Lewy Body was diagnosed in the hospital and I think it did do some good. They took her off all her meds and started from scratch. She did deteriorate rapidly though, a few months before this I was sort off 'coping' at home with respite help from Crossraods and holding down a part time job and looking after my family and thinking I would have to start looking at homes maybe 9 months down the line. I understand your wanting to find out more I was exactly the same and while I realise that every case is different and that we need to take things one day at time my way of coping was to arm myself with all the available information.

best wishes Geraldine

 

[doris]

Thanks for your replies,
The doctor prescribed Quetiapine which we started, and for the first three days i didn't sleep. Yesterday and today he is back to normal i can't beleive the difference.We went out in the car today ,had a laugh, got lost, came home and have been in such a good mood its like the last 18 months didn't happen.
I know this is probably only temp but it give such a boost to have him back just if it is for however long.
It is suprising how much their mood affects your life, i have been quite deppressed of late but am feeling alot better today.
Does this disease have stages like AD ?
Thanks again ladies
Doris

 

[suem]

Doris
I have sent you a PM which might give your further info
regards