Re: question

June 18, 2002

Colleen

The swallowing and problems are pretty common on this board, I believe.

My father-in-law has not had much in the way of swallowing problems yet but

I think we are headed in that direction.

One book I have read recently that I found very inspirational on " what to

say " when our LOs are agitated, confused, etc. is " Talking to Alzheimers "

by Strauss.

Here it is on Amazon (forgive the plug):

http://www.amazon.com/exec/obidos/ASIN/1572242701/ref=cm_mp_etc/104-7756981-

8490362

It is very practical and includes sections on dealing with anger, tears,

etc. all the way up to helpful hints on how to reword question to make it

easy for the LO to stay in the conversation.

I don't know if I've mentioned it on the board before. If I have forgive

me (yikes, memory loss).

Christie

At 21:07 6/18/02 -0500, you wrote:

> I suppose I really want to know is what to expect next in the

>

> Does anyone

> have suggestions to calm them when they are so aggitated?

>

> Colleen

>

June 18, 2002

Colleen

Welcome to a group with many stories, experiences, and heartfelt

replies. I have noticed my dad is having trouble swallowing

liquids....he is choking on them easily. I know from testing that food

or liquids taken in can be asperated into the lungs....causing

asperation pheumonia. This is always a concern as my dad has

experienced it before.

As for calming during hallucinations, I reassure my dad. I confirm what

he is seeing, even though he can't tell me what is there, I just know he

isn't looking at me and something else is agitating him. I tell him how

I realize how he must be scared and frustrated. Also, if we can just

turn away then maybe what he is seeing will go away. Also, many times I

tell him it will be ok, that I am going through it with him and we will

both be ok.

Best of luck to you, and I will add you to my list of prayers. When all

else seems to fail, pray!

Sandie

Des Moines, IA

June 19, 2002

Sorry to hear that your mother is so advanced in the disease. My only

suggestion is to look at her meds and see if any of them are causing

agitation and to communicate with her doctors. Unforunately, with this

disease, you may need to do a lot of the research yourself. Perhaps you

could list ALL her meds to us and some might stand out.

She also may benifit from very gentle physical therapy. Perhaps covered

now my Medicare since they have added it to the dementia diagnosis. Imelda

To learn more about Lewy Body Disase, please visit the Lewy Body Disease

Association site at: http://www.lewybodydisease.org

June 20, 2002

Hi Colleen,

We just entered Home Health because my husband suddenly lost his ability

to walk. He doesn't have the swallowing or lung problems. The med that

has helped my husband the most with the hallucinations is Exelon - even

a low dose may help (my husband takes the 4.5 mg size mixed in a little

peach juice). If he misses a dose he has a lot of problems with the

hallucinations. We recently started sinemet in a very low dose (10/100)

and my husband can tolerate 2 tablets a half at a time throughout the

day (it also causes hallunation problems). It seems to ease his

stiffness/pain and he can stand for a short time (long enough for me to

be able to bathe his backside a couple times a day). ~lula

June 21, 2002

In a message dated 6/18/02 9:07:24 PM Central Daylight Time,

liebhart@... writes:

> My question is - will this disease effect her swallowing skills and lung

> function.

Hello and welcome, Colleen. Sorry to hear what is happening to your mother

and that she has osteoporosis as well.

To answer your question, it is our experience here that the poor posture will

indeed effect her breathing and swallowing. My husband's Parkinsonism is

quite pronounced and he occasionally complains of difficulty swallowing.

Also, the compression of the internal organs due to poor posture renders them

less than fully functional. His physician told me some years ago that

respiratory problems are the usual cause of death for individuals afflicted

in this manner.

Is your mother in any kind of physical therapy? My husband is and it is

helping him considerably.

Cheryl

June 21, 2002

In a message dated 6/18/02 9:07:24 PM Central Daylight Time,

liebhart@... writes:

> My question is - will this disease effect her swallowing skills and lung

> function.

Hello and welcome, Colleen. Sorry to hear what is happening to your mother

and that she has osteoporosis as well.

To answer your question, it is our experience here that the poor posture will

indeed effect her breathing and swallowing. My husband's Parkinsonism is

quite pronounced and he occasionally complains of difficulty swallowing.

Also, the compression of the internal organs due to poor posture renders them

less than fully functional. His physician told me some years ago that

respiratory problems are the usual cause of death for individuals afflicted

in this manner.

Is your mother in any kind of physical therapy? My husband is and it is

helping him considerably.

Cheryl

June 21, 2002

Thanks for the response. They are planning to start physical therapy again to

see if she responds. She is so advanced into the disease that she does not

respond well to the therapist anymore. This did help last summer at a time when

she stopped walking.

She started walking again with the therapist help, but this time it appears more

severe with the dementia. We have had it recently diagnoised, but have been

experiencing the effects of the disease for at least 5 years. This time the

decline seems permanent.

However she moved herself from the wheel chair to a living room chair when no

one was watching! We don't know how she made it without falling. She was not

walked in weeks. She did fall a week ago when she tired something similar. The

doctor is trying her

on a new medicine and will start therapy with this medicine if she seems to

tolerate the low dosage of this medicine. I will need to

write down the type of medicine to share. I think it must be a fairly new

medicine, because the doctor is interested in her success and will give it to

others based on her experience.

She is starting to loose bathrooming skills. I suppose I want to know how low

she will go with this disease before passing. She is in such poor total health

that I think each week is her last. Thanks for sharing with me. Colleen

Re: question

In a message dated 6/18/02 9:07:24 PM Central Daylight Time,

liebhart@... writes:

> My question is - will this disease effect her swallowing skills and lung

> function.

Hello and welcome, Colleen. Sorry to hear what is happening to your mother

and that she has osteoporosis as well.

To answer your question, it is our experience here that the poor posture will

indeed effect her breathing and swallowing. My husband's Parkinsonism is

quite pronounced and he occasionally complains of difficulty swallowing.

Also, the compression of the internal organs due to poor posture renders them

less than fully functional. His physician told me some years ago that

respiratory problems are the usual cause of death for individuals afflicted

in this manner.

Is your mother in any kind of physical therapy? My husband is and it is

helping him considerably.

Cheryl

June 21, 2002

Thanks for the response. They are planning to start physical therapy again to

see if she responds. She is so advanced into the disease that she does not

respond well to the therapist anymore. This did help last summer at a time when

she stopped walking.

She started walking again with the therapist help, but this time it appears more

severe with the dementia. We have had it recently diagnoised, but have been

experiencing the effects of the disease for at least 5 years. This time the

decline seems permanent.

However she moved herself from the wheel chair to a living room chair when no

one was watching! We don't know how she made it without falling. She was not

walked in weeks. She did fall a week ago when she tired something similar. The

doctor is trying her

on a new medicine and will start therapy with this medicine if she seems to

tolerate the low dosage of this medicine. I will need to

write down the type of medicine to share. I think it must be a fairly new

medicine, because the doctor is interested in her success and will give it to

others based on her experience.

She is starting to loose bathrooming skills. I suppose I want to know how low

she will go with this disease before passing. She is in such poor total health

that I think each week is her last. Thanks for sharing with me. Colleen

Re: question

In a message dated 6/18/02 9:07:24 PM Central Daylight Time,

liebhart@... writes:

> My question is - will this disease effect her swallowing skills and lung

> function.

Hello and welcome, Colleen. Sorry to hear what is happening to your mother

and that she has osteoporosis as well.

To answer your question, it is our experience here that the poor posture will

indeed effect her breathing and swallowing. My husband's Parkinsonism is

quite pronounced and he occasionally complains of difficulty swallowing.

Also, the compression of the internal organs due to poor posture renders them

less than fully functional. His physician told me some years ago that

respiratory problems are the usual cause of death for individuals afflicted

in this manner.

Is your mother in any kind of physical therapy? My husband is and it is

helping him considerably.

Cheryl

June 21, 2002

Thanks for the response. They are planning to start physical therapy again to

see if she responds. She is so advanced into the disease that she does not

respond well to the therapist anymore. This did help last summer at a time when

she stopped walking.

She started walking again with the therapist help, but this time it appears more

severe with the dementia. We have had it recently diagnoised, but have been

experiencing the effects of the disease for at least 5 years. This time the

decline seems permanent.

However she moved herself from the wheel chair to a living room chair when no

one was watching! We don't know how she made it without falling. She was not

walked in weeks. She did fall a week ago when she tired something similar. The

doctor is trying her

on a new medicine and will start therapy with this medicine if she seems to

tolerate the low dosage of this medicine. I will need to

write down the type of medicine to share. I think it must be a fairly new

medicine, because the doctor is interested in her success and will give it to

others based on her experience.

She is starting to loose bathrooming skills. I suppose I want to know how low

she will go with this disease before passing. She is in such poor total health

that I think each week is her last. Thanks for sharing with me. Colleen

Re: question

In a message dated 6/18/02 9:07:24 PM Central Daylight Time,

liebhart@... writes:

> My question is - will this disease effect her swallowing skills and lung

> function.

Hello and welcome, Colleen. Sorry to hear what is happening to your mother

and that she has osteoporosis as well.

To answer your question, it is our experience here that the poor posture will

indeed effect her breathing and swallowing. My husband's Parkinsonism is

quite pronounced and he occasionally complains of difficulty swallowing.

Also, the compression of the internal organs due to poor posture renders them

less than fully functional. His physician told me some years ago that

respiratory problems are the usual cause of death for individuals afflicted

in this manner.

Is your mother in any kind of physical therapy? My husband is and it is

helping him considerably.

Cheryl

June 22, 2002

In a message dated 6/21/02 2:37:49 PM Central Daylight Time,

liebhart@... writes:

> She is so advanced into the disease that she does not respond well to the

> therapist anymore.

Hi, Colleen,

It was looking that way here for awhile, too. Unable to understand or follow

directions. But with ongoing PT and OT I see improved cognition, too. The

massage therapist once told me that the phsycial manipulations that go with

massage and PT help to release the " feel good and think better " enzymes in

the brain. So once finished with PT it will be back to massage therapy and

exercise class. I know he will crash again and again, but just keeping my

fingers crossed for now.

I find it interesting that your mother was able to move herself from

wheelchair to couch on her own. I've seen that before and marvelled. :-)

As far as " how low will she go " before it is all over, that will depend on

her and her other health problems. For those in otherwise good general

health, deterioration can result in total, global incapacity in which the

patient is unable to do anything at all for themselves and becomes oblivious

to their surroundings. I hope my husband goes before reaching that stage.

I'm sorry for the tightrope you are walking on a weekly basis.

Cheryl

June 22, 2002