Re: Re: DLBD Patient would like to say Hello

[Guest guest]

patti,

one of the caregivers traits is patience, more patience than most, adn when

we get frustrated we have to escape.

again, your posts are so informative, i will work on getting those sites

looked up for you.

sharon m

a smile a day keeps the meanies away!!!

[Guest guest]

Dear Patti:

Thank you for your prompt response. I you have confirmed what I thought

about the disease. The reasoning process is not affected, I could see it in my

father's eyes, but it was the communication that was difficult. It takes a lot

of patience and putting yourself in the LO's place to communicate. Have you

tried to write letters to your family? I think it would be so much easier if

we know what you are going through and what kind of support you need. They

will probably understand your wishes better and will have a " hard copy " to go

by.

That can be a starting place for you to let your family know about your

condition. This is going to be so emotional for everyone and will make it more

difficult for you to communicate. If you have a note telling them about it, it

will relieve you from that emotional difficulty and then you can have a list

for yourself of items that you want to discuss, you will not have to rely on

your memory at that point. This is what I have done all my life, I have a

" little bit " of ADD, but managed to get a B.S. in Chemistry, worked as a chemist

and as a science teacher. I have always had to rely on lists to remind myself

what needs to be done daily, especially when I don't have a lot of structure

in my life.

Try to find new games to challenge yourself. Have patience and give yourself

time with them. You want to " think outside of the box " , exercise different

parts of your brain, make new neural connections. The point is not necessarily

to win, just practice something new.

Are you having trouble walking? That was my dad's first and most pronounced

symptom. The last year of his life, whenever I took him to the DR, I insisted

that he use a wheelchair from the car to the office. I was very adamant

about it, but he didn't get mad, he used to laugh at me because I was afraid he

would fall and he thought he could make it on his feet. Maybe he realized it

was better for him to keep trying to walk as much as he could. He was in

physical therapy for about nine years. My dad had an accident nine years

before.

He was in Intensive Care for ten days, at 79 years of age, with no hope of

survival. He had many hours of reconstructive surgery and a lot of pain

medication that I am sure triggered his LBD. He did survive, but was never able

to

walk properly again. We thought he had problems walking because of all the

damage on his pelvis and femur, so he got to go to rehabilitation a lot through

all

those years, I am sure that helped him to stay more physically fit.

I don't know how different your thought process is from everyone else's. I

have those flashes of brilliance, and if I don't write it down, the thought is

gone. I am so glad you can take so much pleasure in your poetry. You might

consider sharing it with us, if it is not too personal.

Thank you for letting us understand what you are going trough. It seems that

what you loose the most is the daily functional abilities, your intellect

remains, you just need a little more time to express yourself and take care of

yourself. The hallucinations and panic attacks are also a concern, but I will

leave that for a later post. I do have to go back to my list!

My love and prayers are with you, Patti, hugs,

Josie

[Guest guest]

Liam had been an avid reader but in the last four years I noticed that even with

books on tape he could not stick with any book until the conclusion. Music,

which he dearly loved, would put him to sleep as would tv.

Simmel

Re: DLBD Patient would like to say Hello

Hi Josie,

My heart gors out to you and I firmly believe that evntuall and

hopefully not too far off there will be a cure for all these

degenerative diseases.

To answer your question yes. It is easier for me to write than it is

to speak the words. Even though doing this I still sometimes get a

blnk it is always something I can come back to latter. These blank

spells in search for the right words, names or whatevr is much grater

than talking as I can take as much time as I like and I have no fears

of being interrupted or ot talking loud enough and having to repeat

myself all the time. One problem I do sometimes have and that is

being misunderstood as people cannot hear the tone of my voice, I

also find that I am contiually showing signs of dyslexia in my

typing, or leaving letters out, particularly when I start to type too

fast. I do try to proofread as I go, but I miss alot easily. I enjoy

writing poetry. It is ver frustrating for me to write any more than

my name and sometimes that is hard. Then I have trouble reading it

when I do. My vision is not that great and so it seems things are

easier for me to read on here than other tyoes of writing. I no

longer have the concentration to finish a book and have to read th9gs

over and over again to sink in sometimes, but these things I have

learned to deal with and appreciate the fact I can at least do some

of the things I lost. I am trying not to lse them again so word

games, and wiritng about my feelings helps me. I am not great at the

games, but then some of them I surprize myself. My poetry really

amazes me. I look at it and can't believe I wrote that

I have to write it as quickly as it comes to mind or I forget it.

This is one of the reasons that I feel some of my intellect remains

intact and has not deteriorated to the point some of the other

functioning abilities have. I think that forms of Lewy body are

interrelated if not all and I too am concerned about the genetic

factor. As similar problems have been in my family as well.

I do hope you will post again. I think this helps me although I may

be slow with it everyone here seems to be very

patient.....Hugs...Patti

> Dear Patty:

>

> I am Josie, I have been lurking for a long time. I was very active

on the

> site, but could not handle the pain anymore and had to give it up.

Hi,

> everyone, my dear friends, I continue to pray for all of you. It

took Patty's

> enourmous courage and clarity to bring me back, I will go back to

lurking soon.

>

> Patty: My dad was diagnosed with LBD very late in his disease. We

got the

> diagnosis about one and a half months before he passed away. He

had all the

> symptoms for quite a few years, especially his problems with

walking and falling

> down. He had problems formulating his thoughts into words only the

last few

> weeks of his life. Before that, he became very animated and

coherent whenever

> he had company and did not seem to be bad at all. He was able to

continue to

> give us advice and encouragement until the end. He did not read by

himself or

> watch TV for over a year, but my mom read to him. She kept him

busy playing

> computer games, dominoes and everything else he could be interested

in.

>

> I would like to know whether you feel that you can communicate

better by

> typing on the internet than by having to speak. Whether the words

come easier

> through your fingers than through your mouth, or is it that you can

take your

> time typing? My dad became frustrated when he could not speak the

words that we

> all realized he was thinking in his mind and even more frustrated

when we

> tried to guess and guessed wrong.

>

> You said that your mom had the same symptoms you had. It seems to

me that it

> can really run in families. My dad's side of the family has a

history of

> this type of behavior, and one of his sisters is having a lot of

trouble with it

> now, she has not been diagnosed yet, but she can't remember

anything or make

> any desicions by herself. My dad's uncle died of Parkinson's and

my

> grandmother had dementia for several years before she died.

>

> I admire you so much, as all of the other members here do as

well. You are

> very courageous and knowledgeable and we really appreciate being

able to get

> your point of view. You and your family have my prayers and

support, hugs,

>

> Josie

>

>

>

[Guest guest]

In a message dated 7/13/2004 6:37:50 PM Central Daylight Time,

pattijsp@... writes:

I find it very frustrating to write. My writing

is so small and sloppy I cna't hardly read it.

Patti,

you wrote about being frustrated writing. my dad has that too, and as he

gets further into lbd his writing gets smaller and smaller and more and more

difficult to read.

reaching out to hug you, take care patti,

sharon m

a smile a day keeps the meanies away!!!

[Guest guest]

Patti

Liam's writing was so bad for the last few years that he could not read what he

tried to write.

Simmel

Re: Re: DLBD Patient would like to say Hello

In a message dated 7/13/2004 6:37:50 PM Central Daylight Time,

pattijsp@... writes:

I find it very frustrating to write. My writing

is so small and sloppy I cna't hardly read it.

Patti,

you wrote about being frustrated writing. my dad has that too, and as he

gets further into lbd his writing gets smaller and smaller and more and more

difficult to read.

reaching out to hug you, take care patti,

sharon m

a smile a day keeps the meanies away!!!