RE: My Dad - progression

[Guest guest]

In a message dated 9/9/02 4:13:04 PM Central Daylight Time,

cindy.vechinski@... writes:

> You know, my MIL's doctor recommended that the kids take 1000IU of Vitamin E

> to help " ward off " the possibility of them contracting this dreaded

> disease. Have you heard that?

I sure haven't! I am aware that it is believed to enhance the effectiveness

of Aricept - don't know about other meds. The interviewer last week did ask

what meds and vitamins each of us is taking. When I included my own dose of

400mg Vit E twice a day (which I've done for decades!!) he responded with and

emphatic, " GOOD! " Wish I'd asked him about that. But - am fixin' to send

him an e-mail anyway, so will include your question.

Sandie, how frightening to possibly have two men within the family have the

same condition. I have begun to worry about my BIL, as his posture and gait

are not unlike Bob's earlier on, his judgement is compromised, and he is

increasingly confused. His wife complains of his short term memory. I am

almost waiting for her to say he is seeing things. Their 92 yo mother is

still very, very sharp, in spite of a brief bout with dementia following

surgery last fall (not uncommon). Let us know what your uncle's doctors

decide, please.

Cheryl

[Guest guest]

Hey, Jacki, with " y'all " and " carrying " your mother - where in the South are

you?

Cheryl, in Mobile

[Guest guest]

Hi Sandie. You and your dad are always in my prayers, and I will be certain

to include his brother. I am so happy that he is receiving better care

right now. Do you think he feels better, or more at ease, with a " guy "

taking care of him versus a gal?

You know, my MIL's doctor recommended that the kids take 1000IU of Vitamin E

to help " ward off " the possibility of them contracting this dreaded disease.

Have you heard that?

Good luck and thanks for keeping us posted.

My Dad - progression

Group

I have noticed a progression with my dad. He is still at the hospital,

psychiatric unit, and receiving very good care. Everyone there has

echoed just how much they adore my dad, and care so deeply for him. One

man even told me he remembers taking care of dad 2 1/2 yrs ago when dad

was there...it is very hard for him to face the progression and just

can't imagine just how hard it must be for me. He still cares for my

dad and does cares for my dad. This difficult time facing the disease

has not stopped him from being near my dad and for that I am grateful.

Anyway, I remember posting how dad is refusing most meals. While at the

hospital he has needed to be fed most of the time. Again, sometimes he

eats and sometimes he doesn't, yet when he does 99% of the time he needs

to be fed. He still lies awake in his bed and doesn't go out of his

room much. Almost like a fear or phobia of being around other people.

My intuition tells me he is embarrassed and concerned of what other

people may think.

Also, on to another family member. My dads oldest brother was diagnosed

with Parkinson's several yrs. ago. Yesterday my aunt told me he is now

having hallucinations. He doesn't tremor all day, yet tremors all

through the night and is up most of the night with these hallucinations.

I was able to ask my aunt what these hallucinations were and they are

mainly of people, former customers in the lighting business they own.

Hmmmm, this frightens me that there may be 2 men in my family with this

dreaded disease. Please keep these brothers in your prayers.....

Sandie

Des Moines, IA

[Guest guest]

Hi Sandie. You and your dad are always in my prayers, and I will be certain

to include his brother. I am so happy that he is receiving better care

right now. Do you think he feels better, or more at ease, with a " guy "

taking care of him versus a gal?

You know, my MIL's doctor recommended that the kids take 1000IU of Vitamin E

to help " ward off " the possibility of them contracting this dreaded disease.

Have you heard that?

Good luck and thanks for keeping us posted.

My Dad - progression

Group

I have noticed a progression with my dad. He is still at the hospital,

psychiatric unit, and receiving very good care. Everyone there has

echoed just how much they adore my dad, and care so deeply for him. One

man even told me he remembers taking care of dad 2 1/2 yrs ago when dad

was there...it is very hard for him to face the progression and just

can't imagine just how hard it must be for me. He still cares for my

dad and does cares for my dad. This difficult time facing the disease

has not stopped him from being near my dad and for that I am grateful.

Anyway, I remember posting how dad is refusing most meals. While at the

hospital he has needed to be fed most of the time. Again, sometimes he

eats and sometimes he doesn't, yet when he does 99% of the time he needs

to be fed. He still lies awake in his bed and doesn't go out of his

room much. Almost like a fear or phobia of being around other people.

My intuition tells me he is embarrassed and concerned of what other

people may think.

Also, on to another family member. My dads oldest brother was diagnosed

with Parkinson's several yrs. ago. Yesterday my aunt told me he is now

having hallucinations. He doesn't tremor all day, yet tremors all

through the night and is up most of the night with these hallucinations.

I was able to ask my aunt what these hallucinations were and they are

mainly of people, former customers in the lighting business they own.

Hmmmm, this frightens me that there may be 2 men in my family with this

dreaded disease. Please keep these brothers in your prayers.....

Sandie

Des Moines, IA

[Guest guest]

In a message dated 9/9/02 8:04:22 PM Central Daylight Time,

jgibbs@... writes:

> am from Tifton, GA located on I-75 in south Georgia.

We are practically neighbors! :-) Cheryl

[Guest guest]

Hi!

The last time I carried my mother to the neurologist, I asked him what would be

good for us children to take that could help us keep the brain cells going. He

said Vitamin E was very good. He suggested getting from GNC called " Cell

Protector " . It had what you needed and also helps your immune system. Since

vitamin e was mentioned I thought ya'll might be interested in this.

Jackie

Re: My Dad - progression

In a message dated 9/9/02 4:13:04 PM Central Daylight Time,

cindy.vechinski@... writes:

> You know, my MIL's doctor recommended that the kids take 1000IU of Vitamin E

> to help " ward off " the possibility of them contracting this dreaded

> disease. Have you heard that?

I sure haven't! I am aware that it is believed to enhance the effectiveness

of Aricept - don't know about other meds. The interviewer last week did ask

what meds and vitamins each of us is taking. When I included my own dose of

400mg Vit E twice a day (which I've done for decades!!) he responded with and

emphatic, " GOOD! " Wish I'd asked him about that. But - am fixin' to send

him an e-mail anyway, so will include your question.

Sandie, how frightening to possibly have two men within the family have the

same condition. I have begun to worry about my BIL, as his posture and gait

are not unlike Bob's earlier on, his judgement is compromised, and he is

increasingly confused. His wife complains of his short term memory. I am

almost waiting for her to say he is seeing things. Their 92 yo mother is

still very, very sharp, in spite of a brief bout with dementia following

surgery last fall (not uncommon). Let us know what your uncle's doctors

decide, please.

Cheryl

[Guest guest]

Hi!

I am from Tifton, GA located on I-75 in south Georgia.

Jackie

Re: My Dad - progression

Hey, Jacki, with " y'all " and " carrying " your mother - where in the South are

you?

Cheryl, in Mobile

[Guest guest]

--- In LBDcaregivers@y..., " Vechinski, " <cindy.vechinski@m...>

>You know, my MIL's doctor recommended that the kids take 1000IU of

>Vitamin E to help " ward off " the possibility of them contracting

>this dreaded disease. Have you heard that?

that is interesting, my husband has taken Vitamin E for years

but not in such a high dose. I wonder where the doctor heard this,

and if there have been any studies done on it.

Sandy, So happy to hear that your dad is getting loving care at the

hospital. Apparently your BIL has not been diagnosed with LBD yet,

are they looking at that...how awful for the family. As always you

are in my thoughts and prayers. Barb

[Guest guest]

Cheryl

Awww, the struggles your BIL is having is very scary too. I understand

how you are just waiting for " the diagnosis " . My uncle is up for some

type of new med. as a research tool. When I asked my aunt what it was

she couldn't remember. He was supposed to start in July but all Drs.

were on vacation at times throughout the month, then again in August.

When she called the office said possibly the beginning of Sept. As of

Friday she was supposed to call and when I saw her Sunday, I forgot to

ask he she talked to the dr. office. My uncle does see a very compitent

neurologist. I did tell my aunt of the possible LBD, as some times it

does start with a PD diagnosis. Anyway, I am wishing you. with your

upcoming decisions, strength, knowledge and courage. You will know when

it is the right time to make the decisions necessary to better

accomodate Bob's struggles. I will be saying extra prayers for you,

Bob, and your BIL. Thank you for sharing this story Cheryl!

Sandie

Des Moines, IA

[Guest guest]

You know, this disease doesn't run in my family, but it didn't run in my

MIL's either, so I think I might just start taking that stuff! I hope they

are not horse pills!

Thanks Jackie!

Re: My Dad - progression

Hi!

The last time I carried my mother to the neurologist, I asked him what would

be good for us children to take that could help us keep the brain cells

going. He said Vitamin E was very good. He suggested getting from GNC

called " Cell Protector " . It had what you needed and also helps your immune

system. Since vitamin e was mentioned I thought ya'll might be interested

in this.

Jackie

Re: My Dad - progression

In a message dated 9/9/02 4:13:04 PM Central Daylight Time,

cindy.vechinski@... writes:

> You know, my MIL's doctor recommended that the kids take 1000IU of

Vitamin E

> to help " ward off " the possibility of them contracting this dreaded

> disease. Have you heard that?

I sure haven't! I am aware that it is believed to enhance the

effectiveness

of Aricept - don't know about other meds. The interviewer last week did

ask

what meds and vitamins each of us is taking. When I included my own dose

of

400mg Vit E twice a day (which I've done for decades!!) he responded with

and

emphatic, " GOOD! " Wish I'd asked him about that. But - am fixin' to send

him an e-mail anyway, so will include your question.

Sandie, how frightening to possibly have two men within the family have

the

same condition. I have begun to worry about my BIL, as his posture and

gait

are not unlike Bob's earlier on, his judgement is compromised, and he is

increasingly confused. His wife complains of his short term memory. I am

almost waiting for her to say he is seeing things. Their 92 yo mother is

still very, very sharp, in spite of a brief bout with dementia following

surgery last fall (not uncommon). Let us know what your uncle's doctors

decide, please.

Cheryl

[Guest guest]

In answer to your question to having a " guy " taking care of my dad as

opposed to a " gal " , I really don't think that has mattered much. I

think it is more about " he " needing someone to take care of him. I have

been talking extensively to the staff at the hospital and have had a

very positive light shed on the subject of my dad with LBD. All the

staff at the hospital really likes my dad. They are compassionate and

caring people. Some of them feel that dad is just plain fearful. None

of the staff feels dad is aggressive or combative. None of them feel

that my dad will hurt them. All of them are very comfortable with him

and caring for him. The only thing they struggle with is the fear that

my dad displays. It seems to break their hearts as it does mine. He

seems to only want to lay in the bed, not wanting to eat and not wanting

to participate in life...any activities.

Today I went to visit him, was able to get some meds. in him, put an

antibiotic cream on his face, and fed him half a personal size container

of ice cream. He has not been out of bed for a day, yet today I was

able to get him up. He is so weak and somewhat unstable. I know this

disease has progressed into an area that I am not real ready to face,

yet stand my ground in giving my dad his dignity. He is now totally off

the Zyprexia (that happened yesterday). The rest is up to him and any

other power higher than my dad and I.

Still hanging in there, with my dad in my heart, mind, and soul...

Sandie

Des Moines, IA

[Guest guest]

Jackie

Thank you for passing on the " Cell Protector " information. I am sure I

will check into this one. Hope all is well with you, and that your mom

is doing fine!!!

Sandie

Des Moines, IA

[Guest guest]

Thanks for asking about my mom. We still don't know if it is alzheimer's or

LBD. He has put her on exelon and seroquel. She still is worse in the

evenings. Wanting to go home. She asks how her things have got here and she

walks around the house as if she has never seen it before. Very confused but

she has been calmer.

Jackie

Re: My Dad - progression

Jackie

Thank you for passing on the " Cell Protector " information. I am sure I

will check into this one. Hope all is well with you, and that your mom

is doing fine!!!

Sandie

Des Moines, IA

[Guest guest]

Jackie

On a positive note, atleast your mom is much calmer. In this disease I

have learned to accept the bad with the good. I truly hope your mom is

at peace soon knowing that even though her things are there, it will be

ok. Best of luck to you, and you will be in my prayers.

Sandie

Des Moines, IA

[Guest guest]

Thanks Sandie for your concern and prayers. You and yours are in mine also.

Jackie

Re: My Dad - progression

Jackie

On a positive note, atleast your mom is much calmer. In this disease I

have learned to accept the bad with the good. I truly hope your mom is

at peace soon knowing that even though her things are there, it will be

ok. Best of luck to you, and you will be in my prayers.

Sandie

Des Moines, IA

[Guest guest]

In a message dated 9/11/02 12:18:40 PM Central Daylight Time,

cindy.vechinski@... writes:

> My MIL did better when a " gal " attended to her rather then a " guy " . Not

> sure why.

TeeHee. MY MIL, who only has the barest hint of dementia, did a LOT better

when her new primary aide was a male. He even got her to wear makeup again!!

:-)

Cheryl

[Guest guest]

I almost wish your Dad could just stay at the hospital being his care seems

so much better there. My MIL did better when a " gal " attended to her rather

then a " guy " . Not sure why. At the group home, they only have women

working there, no men. I am glad the hospital you have him in right now is

kind and compassionate. The hospital my MIL was in, they were very

inattentive and not real compassionate at all. It is certainly sad to hear

he is fearful. Was he that fearful when he was on all the medications

consistently?

I do wish you the best and will keep you all in my prayers. Hang in there.

I hope you know what a great job you do caring for your Dad!

RE: My Dad - progression

In answer to your question to having a " guy " taking care of my dad as

opposed to a " gal " , I really don't think that has mattered much. I

think it is more about " he " needing someone to take care of him. I have

been talking extensively to the staff at the hospital and have had a

very positive light shed on the subject of my dad with LBD. All the

staff at the hospital really likes my dad. They are compassionate and

caring people. Some of them feel that dad is just plain fearful. None

of the staff feels dad is aggressive or combative. None of them feel

that my dad will hurt them. All of them are very comfortable with him

and caring for him. The only thing they struggle with is the fear that

my dad displays. It seems to break their hearts as it does mine. He

seems to only want to lay in the bed, not wanting to eat and not wanting

to participate in life...any activities.

Today I went to visit him, was able to get some meds. in him, put an

antibiotic cream on his face, and fed him half a personal size container

of ice cream. He has not been out of bed for a day, yet today I was

able to get him up. He is so weak and somewhat unstable. I know this

disease has progressed into an area that I am not real ready to face,

yet stand my ground in giving my dad his dignity. He is now totally off

the Zyprexia (that happened yesterday). The rest is up to him and any

other power higher than my dad and I.

Still hanging in there, with my dad in my heart, mind, and soul...

Sandie

Des Moines, IA

[Guest guest]

Wow! He must be pretty good with people!

Re: My Dad - progression

In a message dated 9/11/02 12:18:40 PM Central Daylight Time,

cindy.vechinski@... writes:

> My MIL did better when a " gal " attended to her rather then a " guy " . Not

> sure why.

TeeHee. MY MIL, who only has the barest hint of dementia, did a LOT better

when her new primary aide was a male. He even got her to wear makeup

again!!

:-)

Cheryl

[Guest guest]

It is hard to know if my dad is fearful while on a continual schedule of

meds., it has been so long since that has happened. Thank you for your

caring words, and your support. Tomorrow is yet another meeting and I

sure wish I had an army to go with me...maybe isn't that busy

and could bring the sub with her...anyway, reality is I will be my own

team and have found my voice alone can echo when it comes to my dad.

Today I had the honor of going to our amusement park, in one of the

banquet rooms, to here the actual Patch speak. WOW WHAT A MESSAGE

HE HAS TO SEND. I am tempted to buy another book and give to the

nursing home in hopes they will show some LOVE and COMPASSION, CARING,

and TIME to all of the residents there. Patch took time with everyone

he spoke to, individually. When in line to have him sign my book he

asked what I got out of todays speech...I said I have learned on my own

that every day is a gift. That my mom died 18 1/2 yrs ago, my dad

struggles with a degenerative neurological disease and my sun comes up

everyday. I have found to incorporate humor in every day life and make

the best out of what is left. He shook my hand and said " Bless You. "

He is truly an inspiration.

Wishing you all that life has to offer and hoping your MIL is doing

well.

Sandie

Des Moines, IA

[Guest guest]

Good luck with tomorrow. I will look forward to hearing your results. What

an honor to meet and speak with Patch ! You ARE an inspiration Sandie!

I have reaped so much benefit from so many of your posts. Not just on this

disease or the dealings of it, but also how to still find the positives in

things. I feel very fortunate to have you as a friend!

Good luck with things tomorrow.

RE: My Dad - progression

It is hard to know if my dad is fearful while on a continual schedule of

meds., it has been so long since that has happened. Thank you for your

caring words, and your support. Tomorrow is yet another meeting and I

sure wish I had an army to go with me...maybe isn't that busy

and could bring the sub with her...anyway, reality is I will be my own

team and have found my voice alone can echo when it comes to my dad.

Today I had the honor of going to our amusement park, in one of the

banquet rooms, to here the actual Patch speak. WOW WHAT A MESSAGE

HE HAS TO SEND. I am tempted to buy another book and give to the

nursing home in hopes they will show some LOVE and COMPASSION, CARING,

and TIME to all of the residents there. Patch took time with everyone

he spoke to, individually. When in line to have him sign my book he

asked what I got out of todays speech...I said I have learned on my own

that every day is a gift. That my mom died 18 1/2 yrs ago, my dad

struggles with a degenerative neurological disease and my sun comes up

everyday. I have found to incorporate humor in every day life and make

the best out of what is left. He shook my hand and said " Bless You. "

He is truly an inspiration.

Wishing you all that life has to offer and hoping your MIL is doing

well.

Sandie

Des Moines, IA

[Guest guest]

-

And I feel honored knowing you are there as a friend of mine. Just

think, you have that huge Mega Mall in Minneapolis...shopping is therapy

to me. I have a friend living in Hopkins, and it is around a 4 hour

drive to her apartment. Iowa really isn't that far. I would love to

meet you in person some day...keep that in mind.

Thank you for all of your kind words and support. I know all your works

on earth will not go unnoticed.

Sandie

Des Moines, IA ~ just a little ways from Minnesota

[Guest guest]

Hi Sandie. Thanks for the nice words! Our Mega Mall is indeed huge. I

don't shop there much because it is so huge it is hard to find your way

around! We take our children to Camp Snoopy a few times a year. That is a

blast! Hopkins is about 35 minutes south of my home. I can't believe you

are only 4 1/2 hours from me!! Wow! I will certainly keep that in mind.

If you ever plan a trip to see her or the mall, let me know!!

Take care,

RE: My Dad - progression

-

And I feel honored knowing you are there as a friend of mine. Just

think, you have that huge Mega Mall in Minneapolis...shopping is therapy

to me. I have a friend living in Hopkins, and it is around a 4 hour

drive to her apartment. Iowa really isn't that far. I would love to

meet you in person some day...keep that in mind.

Thank you for all of your kind words and support. I know all your works

on earth will not go unnoticed.

Sandie

Des Moines, IA ~ just a little ways from Minnesota

[Guest guest]

I will definately let you know if I am headed Northward!! In fact, a

local friend and myself have been planning to do just that...to see our

mutual friend in Hopkins. Maybe that will happen and when it does, I

will also plan on meeting you. This world is definately becomming

smaller and smaller...I just Love It!!

Sandie

Des Moines, IA

[Guest guest]

I will definately let you know if I am headed Northward!! In fact, a

local friend and myself have been planning to do just that...to see our

mutual friend in Hopkins. Maybe that will happen and when it does, I

will also plan on meeting you. This world is definately becomming

smaller and smaller...I just Love It!!

Sandie

Des Moines, IA

[Guest guest]

Sounds great Sandie!

RE: My Dad - progression

I will definately let you know if I am headed Northward!! In fact, a

local friend and myself have been planning to do just that...to see our

mutual friend in Hopkins. Maybe that will happen and when it does, I

will also plan on meeting you. This world is definately becomming

smaller and smaller...I just Love It!!

Sandie

Des Moines, IA