Re: Judy/ Carbi-levedopa ?

[Guest guest]

Hi Judy,

Speaking from my point of view, carbidopa levodopa helped my husband in all

stages. He never had any bad reactions to it, but I noticed he had a slight

tremor in his hands if he did not get the medication on time; as when he was in

emergency, they never gave him his medications when needed, and he would start

to tremor in his hands slightly until they would give it to him and then his

hands would be calm. Every LBD patient is different with their medications, some

react and some don't to certain ones.

Jan Colello

Husband, Jim, dx w/LBD Oct. 2003, but had symptoms in 2000

Deceased, January 22, 2011

 

 

 

 

> , choking does happen to many people at the later stages of the

disease unfortunately. Does it happen only when being fed? Many times, choking

can happen at the very late stages as the muscles in the tongue and throat are

not working properly due to the Parkinsonism. Saliva can pool somewhat in the

throat while sleeping as the person doesn't swallow as often during sleep.

However, I believe you are speaking about it happening during a meal. My

suggestion is to feed as slowly as possible and wait till each small spoonful is

swallowed before putting more into the mouth. Have the spoon touch the tonque

and wait till the person closes their mouth to take it and swallow each time,

instead of just pushing the food in. I hope this helps, Norma

>

>

[Guest guest]

Hi Judy,

Speaking from my point of view, carbidopa levodopa helped my husband in all

stages. He never had any bad reactions to it, but I noticed he had a slight

tremor in his hands if he did not get the medication on time; as when he was in

emergency, they never gave him his medications when needed, and he would start

to tremor in his hands slightly until they would give it to him and then his

hands would be calm. Every LBD patient is different with their medications, some

react and some don't to certain ones.

Jan Colello

Husband, Jim, dx w/LBD Oct. 2003, but had symptoms in 2000

Deceased, January 22, 2011

 

 

 

 

> , choking does happen to many people at the later stages of the

disease unfortunately. Does it happen only when being fed? Many times, choking

can happen at the very late stages as the muscles in the tongue and throat are

not working properly due to the Parkinsonism. Saliva can pool somewhat in the

throat while sleeping as the person doesn't swallow as often during sleep.

However, I believe you are speaking about it happening during a meal. My

suggestion is to feed as slowly as possible and wait till each small spoonful is

swallowed before putting more into the mouth. Have the spoon touch the tonque

and wait till the person closes their mouth to take it and swallow each time,

instead of just pushing the food in. I hope this helps, Norma

>

>

[Guest guest]

Hi jan

Thanks for your take on the carbi- levodopa

My mom never had many of the shaking symptoms usually associated with the

parkinsons - I suppose we should keep thlmgs as is right now!

Interestingly enough with home hospice there now it looks like mom is rallying

some now - starting to Be able to tolerate harder foods again - go figure ! It's

always an enigma how things change!

Thanks,

Judy

Judy R. Strauss LMSW PhD

Lead Faculty

University of Phoenix

Jersey City Campus

100 Town Square Place

|Jersey City, NJ 07310

Cell-

Email- Jrstr@...

>

>

> Hi Judy,

> Speaking from my point of view, carbidopa levodopa helped my husband in all

stages. He never had any bad reactions to it, but I noticed he had a slight

tremor in his hands if he did not get the medication on time; as when he was in

emergency, they never gave him his medications when needed, and he would start

to tremor in his hands slightly until they would give it to him and then his

hands would be calm. Every LBD patient is different with their medications, some

react and some don't to certain ones.

> Jan Colello

> Husband, Jim, dx w/LBD Oct. 2003, but had symptoms in 2000

> Deceased, January 22, 2011

>

>

>

>

>

>

>

> > , choking does happen to many people at the later stages of the

disease unfortunately. Does it happen only when being fed? Many times, choking

can happen at the very late stages as the muscles in the tongue and throat are

not working properly due to the Parkinsonism. Saliva can pool somewhat in the

throat while sleeping as the person doesn't swallow as often during sleep.

However, I believe you are speaking about it happening during a meal. My

suggestion is to feed as slowly as possible and wait till each small spoonful is

swallowed before putting more into the mouth. Have the spoon touch the tonque

and wait till the person closes their mouth to take it and swallow each time,

instead of just pushing the food in. I hope this helps, Norma

> >

> >

>

>

[Guest guest]

 

>

> > , choking does happen to many people at the later stages of the

disease unfortunately. Does it happen only when being fed? Many times, choking

can happen at the very late stages as the muscles in the tongue and throat are

not working properly due to the Parkinsonism. Saliva can pool somewhat in the

throat while sleeping as the person doesn't swallow as often during sleep.

However, I believe you are speaking about it happening during a meal. My

suggestion is to feed as slowly as possible and wait till each small spoonful is

swallowed before putting more into the mouth. Have the spoon touch the tonque

and wait till the person closes their mouth to take it and swallow each time,

instead of just pushing the food in. I hope this helps, Norma

> >

> >

>

>

[Guest guest]

Hi jan and other friends

I so appreciate the immediacy of your answers - it's so comforting to know

someone else is there who 'gets it'

I find it hard to share this with other folks who have no idea what it means

when one day I'm preparing for

The worst and the next day I'm hopeful!

I was wondering if any of the way this disease progresses can be related to the

overall health of the person prior to the onset- meaning in moms case because

her organs are in good shape i.e, no heart disease or diabetes etc-

Has jan or others noticed that being in Prior good health might predict a longer

life span in general than others who have other health issues?

Judy R. Strauss LMSW PhD

Lead Faculty

University of Phoenix

Jersey City Campus

100 Town Square Place

|Jersey City, NJ 07310

Cell-

Email- Jrstr@...

>

>

>

> >

> > > , choking does happen to many people at the later stages of the

disease unfortunately. Does it happen only when being fed? Many times, choking

can happen at the very late stages as the muscles in the tongue and throat are

not working properly due to the Parkinsonism. Saliva can pool somewhat in the

throat while sleeping as the person doesn't swallow as often during sleep.

However, I believe you are speaking about it happening during a meal. My

suggestion is to feed as slowly as possible and wait till each small spoonful is

swallowed before putting more into the mouth. Have the spoon touch the tonque

and wait till the person closes their mouth to take it and swallow each time,

instead of just pushing the food in. I hope this helps, Norma

> > >

> > >

> >

> >

[Guest guest]

Dear Judy,

This is the roller coaster ride that is Lewy Body... one day we are in the

depths of despair, and the next day, there is hope (even though we understand

the outcome). We just don't want our loved ones to suffer, and that is my

greatest worry. I don't want my Mom to be in pain. My Mom was in good health

before this dreaded disease. She is a Holocaust survivor, so I'm wondering if

her difficult childhood could have had some sort of influence on the condition

developing later on.

Heading to the Bronx soon to take care of Mom today. Hope your Mom is

comfortable and can give you a smile.

Hugs,

Helene

> > >

> > > > , choking does happen to many people at the later stages of the

disease unfortunately. Does it happen only when being fed? Many times, choking

can happen at the very late stages as the muscles in the tongue and throat are

not working properly due to the Parkinsonism. Saliva can pool somewhat in the

throat while sleeping as the person doesn't swallow as often during sleep.

However, I believe you are speaking about it happening during a meal. My

suggestion is to feed as slowly as possible and wait till each small spoonful is

swallowed before putting more into the mouth. Have the spoon touch the tonque

and wait till the person closes their mouth to take it and swallow each time,

instead of just pushing the food in. I hope this helps, Norma

> > > >

> > > >

> > >

> > >

[Guest guest]

According to my husband's neuro team, because he was in pretty good health even

with serious LBD present, that he could live for years unless he developed an

infection or some event took place. A couple of months later he fell, broke his

hip, had surgery, had a massive heart attack and died. I had been preparing

myself for several more years. It was, at the end, too fast and utterly

unexpected. We wish for the end, but we wish for the end of Lewy...not the end

of our loved one. The picture of him as a strong, vibrant man is beginning to

reemerge in my thoughs. For a while, all I would see was the ravaged, gaunt

skeleton of the man he was at the end. The pictures from better times are

comforting. Nan

> > >

> > > > , choking does happen to many people at the later stages of the

disease unfortunately. Does it happen only when being fed? Many times, choking

can happen at the very late stages as the muscles in the tongue and throat are

not working properly due to the Parkinsonism. Saliva can pool somewhat in the

throat while sleeping as the person doesn't swallow as often during sleep.

However, I believe you are speaking about it happening during a meal. My

suggestion is to feed as slowly as possible and wait till each small spoonful is

swallowed before putting more into the mouth. Have the spoon touch the tonque

and wait till the person closes their mouth to take it and swallow each time,

instead of just pushing the food in. I hope this helps, Norma

> > > >

> > > >

> > >

> > >

[Guest guest]

Thanks. It's been a couple of months now so I am slowly returning to waht will

be my new normal. Found out I HATE the word 'widow.' Nan

> > > > >

> > > > > > , choking does happen to many people at the later stages of

the disease unfortunately. Does it happen only when being fed? Many times,

choking can happen at the very late stages as the muscles in the tongue and

throat are not working properly due to the Parkinsonism. Saliva can pool

somewhat in the throat while sleeping as the person doesn't swallow as often

during sleep. However, I believe you are speaking about it happening during a

meal. My suggestion is to feed as slowly as possible and wait till each small

spoonful is swallowed before putting more into the mouth. Have the spoon touch

the tonque and wait till the person closes their mouth to take it and swallow

each time, instead of just pushing the food in. I hope this helps, Norma

> > > > > >

> > > > > >

> > > > >

> > > > >

[Guest guest]

Helene, I may be wrong but think it is your aunt, mother's sister who is her

caregiver? If so, how is she holding up to the increasing challenge?

>

> Dear Judy,

> This is the roller coaster ride that is Lewy Body... one day we are in the

depths of despair, and the next day, there is hope (even though we understand

the outcome). We just don't want our loved ones to suffer, and that is my

greatest worry. I don't want my Mom to be in pain. My Mom was in good health

before this dreaded disease. She is a Holocaust survivor, so I'm wondering if

her difficult childhood could have had some sort of influence on the condition

developing later on.

>

> Heading to the Bronx soon to take care of Mom today. Hope your Mom is

comfortable and can give you a smile.

>

> Hugs,

> Helene

[Guest guest]

Nan, I see " widow " as preferable to " divorcee " or " ex " . I know all hold huge

challenges to deal with but I think you can hold yourself up to a lifetime of

devotion that the other labels can't do. I've not been there but would hold my

head high if that becomes reality. I know it is all new to you and I send my

deepest condolences. Please grieve well, heal well and feel proud of all you

accomplished.

>

> Thanks. It's been a couple of months now so I am slowly returning to what

will be my new normal. Found out I HATE the word 'widow.' Nan

[Guest guest]

, you are right. Widow is preferable to those other terms. Thanks for

the reality check. It is sooo preferable. Smiles, Nan

> >

> > Thanks. It's been a couple of months now so I am slowly returning to what

will be my new normal. Found out I HATE the word 'widow.' Nan

>

[Guest guest]

Hi Judy,

Was a tough visit today... she did a lot of sleeping, but seemed lucid while

awake. She didn't speak at all today. She didn't have breakfast or lunch,

except for some ensure and other fluids. Swallowing was hard, and I spent a

good part of the day coaxing fluids into her. Finally, around 5 pm, she started

to swallow, and chew.... was worth all the effort..

Stay in touch.

Helene

> > > >

> > > > > , choking does happen to many people at the later stages of

the disease unfortunately. Does it happen only when being fed? Many times,

choking can happen at the very late stages as the muscles in the tongue and

throat are not working properly due to the Parkinsonism. Saliva can pool

somewhat in the throat while sleeping as the person doesn't swallow as often

during sleep. However, I believe you are speaking about it happening during a

meal. My suggestion is to feed as slowly as possible and wait till each small

spoonful is swallowed before putting more into the mouth. Have the spoon touch

the tonque and wait till the person closes their mouth to take it and swallow

each time, instead of just pushing the food in. I hope this helps, Norma

> > > > >

> > > > >

> > > >

> > > >

[Guest guest]

Wow Helene - this sounds like a real decline from last you were in town - not

eating two meals and not speaking at all sounds new - you mist be beside

yourself - please feel free to call me any time - 24/7

I and this group are here for you- and I know from talking

To you that you have support from others who love u and your mom! But, the offer

remains -

Be in touch

Judy R. Strauss LMSW PhD

Lead Faculty

University of Phoenix

Jersey City Campus

100 Town Square Place

|Jersey City, NJ 07310

Cell-

Email- Jrstr@...

> Hi Judy,

> Was a tough visit today... she did a lot of sleeping, but seemed lucid while

awake. She didn't speak at all today. She didn't have breakfast or lunch, except

for some ensure and other fluids. Swallowing was hard, and I spent a good part

of the day coaxing fluids into her. Finally, around 5 pm, she started to

swallow, and chew.... was worth all the effort..

>

> Stay in touch.

> Helene

>

>

> > > > >

> > > > > > , choking does happen to many people at the later stages of

the disease unfortunately. Does it happen only when being fed? Many times,

choking can happen at the very late stages as the muscles in the tongue and

throat are not working properly due to the Parkinsonism. Saliva can pool

somewhat in the throat while sleeping as the person doesn't swallow as often

during sleep. However, I believe you are speaking about it happening during a

meal. My suggestion is to feed as slowly as possible and wait till each small

spoonful is swallowed before putting more into the mouth. Have the spoon touch

the tonque and wait till the person closes their mouth to take it and swallow

each time, instead of just pushing the food in. I hope this helps, Norma

> > > > > >

> > > > > >

> > > > >

> > > > >

[Guest guest]

Dear ,

What an amazing memory you have!!! Yes, it is my mother's sister who is the

primary caregiver. We have aides in the house 4 days a week, but nobody

overnight (my aunt's decision). I go up weekly, and one of my brothers goes

every other week (and sometimes every week).

My aunt is a 4'10 " powerhouse of energy. She doesn't give up - ever. Sometimes

she can be very negative, and drives me crazy - that was more at the beginning

of the disease. She's mellowed over time. Sometimes she gets very sad, but

always pushes forward. She likes to be in the thick of things all the time -

even when I'm there, she wants to help out. I have to practically yell at her

to leave the house and go out and do her errands or just be by herself.

I forgot to answer the question about the hallucinations. My Mom didn't have

really scary ones, but sometimes saw people standing in the living room that of

course weren't really there. She once called and told me she was going to my

aunts house (this is many years ago) and should she take the couch with her

because it was very still, like it wasn't breathing.

I'm grateful for every good day that she has left, and hope that we can make the

rest of the journey a smooth one.

I hope there is a special place in heaven for our loved ones who have suffered

with this dreaded disease. (And for us, too!)

Helene

> >

> > Dear Judy,

> > This is the roller coaster ride that is Lewy Body... one day we are in the

depths of despair, and the next day, there is hope (even though we understand

the outcome). We just don't want our loved ones to suffer, and that is my

greatest worry. I don't want my Mom to be in pain. My Mom was in good health

before this dreaded disease. She is a Holocaust survivor, so I'm wondering if

her difficult childhood could have had some sort of influence on the condition

developing later on.

> >

> > Heading to the Bronx soon to take care of Mom today. Hope your Mom is

comfortable and can give you a smile.

> >

> > Hugs,

> > Helene

>

[Guest guest]

Dear Judy,

I'm actually used to this by now... there are days that she doesn't say a word,

but you can see in her eyes that she knows what is going on!

At least she was able to drink Ensure, and finally ate at 5 PM.

Hugs for you and your Mom!

Will talk soon!

Helene

> > > > > >

> > > > > > > , choking does happen to many people at the later stages

of the disease unfortunately. Does it happen only when being fed? Many times,

choking can happen at the very late stages as the muscles in the tongue and

throat are not working properly due to the Parkinsonism. Saliva can pool

somewhat in the throat while sleeping as the person doesn't swallow as often

during sleep. However, I believe you are speaking about it happening during a

meal. My suggestion is to feed as slowly as possible and wait till each small

spoonful is swallowed before putting more into the mouth. Have the spoon touch

the tonque and wait till the person closes their mouth to take it and swallow

each time, instead of just pushing the food in. I hope this helps, Norma

> > > > > > >

> > > > > > >

> > > > > >

> > > > > >

[Guest guest]

Hi Judy,

My husband was very athletic and I believe it had a lot to do with his longevity

with LBD.  In 1993 before any doctor was aware of LBD my husband had RLS that

was not known at that time either, so he suffered a great deal with RLS in the

beginning, Jim's neurologist did not dx RLS until a few years later. Then Jim

soon after that began falling and losing his balance, but the neurologist still

didn't know what was going on, so when we were in Connecticut visiting my

husband's family they made an appointment for him to see their doctor who took

one look at Jim and said he had Parkinsons. When we arrived home from our trip

Jim's neurologist still didn't see it. Jim was only falling off balance at the

time, but the Dr. in Connecticut said he could see it by Jim's affect. It wasn't

until 1996 that Jim was actually dx with Parkinsonism by his neurologist, his

neurologist said he didn't have a true Parkinsons, which we found out later in

2003 to be true when

he was dx with PDD/LBD, but was hallucinating, delusional and confused in 2000,

the neurologist had not heard of LBD until 2003. Jim had a long string of things

and issues since 1993 leading up to LBD. I believe it all started when he went

in for back surgery in 1992 and the anesthesia triggered it and it progressed

from that time. That is my opinion. Jim had REM from the day we were married, I

had no idea that it could be a clue to neurological problems, I thought he was

having nightmares, so the anesthesia may have triggered what was already there.

I do believe that because Jim was physically active with no other complications

other than LBD symptoms that it  helped him survive more years. It is just an

opinion, I do not know for a fact if that helps, but it makes sense that it

would.

 

 

 

> >

> > > , choking does happen to many people at the later stages of the

disease unfortunately. Does it happen only when being fed? Many times, choking

can happen at the very late stages as the muscles in the tongue and throat are

not working properly due to the Parkinsonism. Saliva can pool somewhat in the

throat while sleeping as the person doesn't swallow as often during sleep.

However, I believe you are speaking about it happening during a meal. My

suggestion is to feed as slowly as possible and wait till each small spoonful is

swallowed before putting more into the mouth. Have the spoon touch the tonque

and wait till the person closes their mouth to take it and swallow each time,

instead of just pushing the food in. I hope this helps, Norma

> > >

> > >

> >

> >

[Guest guest]

I can only feel the doctor's frustrations too. LBDers are so different in the

way they react to certain medications and their sensitivities to drugs, while

some medications work for some, they don't work for others. I think the bad

medications for LOs should be avoided altogether. My husband did really well on

the Exelon Patch to the end, but I never let the doctor take it beyond the first

dosage. I forget now, but I think it was something like 4.6 I kept it at " less

is best " and it worked fine for him at that dosage. He did react once when a

nurse ran out of Jim's Exelon and took someone's patch that was 9. something. I

was not happy about that. It was too much for Jim and I saw it right away. He

did very well on the lower dosage.

I have heard where others could take Klonopin, my husband could not tolerate

that. My husband could take Vicodin, it helped with his RLS the most, and others

react to Vicodin.

 The one Miracle Drug for Jim that is on the Bad medication list was Mirapex, he

got a second life on that, it lasted for about 3 years before it lost its

effect.

Jim was letting me know toward the end what he wanted and even though he had it

in his health directive not to have any life supports, he knew it was toward the

end and he wanted to live, so I helped him where I could, but at the end it was

impossible for me to do anything.

I think the less medications taken the better if one can get away with it.

Jan

 

 

 

>

> > , choking does happen to many people at the later stages of the

> disease unfortunately. Does it happen only when being fed? Many times,

> choking can happen at the very late stages as the muscles in the tongue and

> throat are not working properly due to the Parkinsonism. Saliva can pool

> somewhat in the throat while sleeping as the person doesn't swallow as often

> during sleep. However, I believe you are speaking about it happening during

> a meal. My suggestion is to feed as slowly as possible and wait till each

> small spoonful is swallowed before putting more into the mouth. Have the

> spoon touch the tonque and wait till the person closes their mouth to take

> it and swallow each time, instead of just pushing the food in. I hope this

> helps, Norma

> >

> >

>

>

[Guest guest]

Hi jan

The anesthesia idea is one I have heard before - my mom endured a huge operation

staying under for over 11:00 hrs after a

Break of both her shoulders in 2004 -

I just wonder given the downhill slide I have had to witness for all these years

if I will ever recover again from the trauma of it all!

Judy R. Strauss LMSW PhD

Lead Faculty

University of Phoenix

Jersey City Campus

100 Town Square Place

|Jersey City, NJ 07310

Cell-

Email- Jrstr@...

>

> Hi Judy,

> My husband was very athletic and I believe it had a lot to do with his

longevity with LBD. In 1993 before any doctor was aware of LBD my husband had

RLS that was not known at that time either, so he suffered a great deal with RLS

in the beginning, Jim's neurologist did not dx RLS until a few years later. Then

Jim soon after that began falling and losing his balance, but the neurologist

still didn't know what was going on, so when we were in Connecticut visiting my

husband's family they made an appointment for him to see their doctor who took

one look at Jim and said he had Parkinsons. When we arrived home from our trip

Jim's neurologist still didn't see it. Jim was only falling off balance at the

time, but the Dr. in Connecticut said he could see it by Jim's affect. It wasn't

until 1996 that Jim was actually dx with Parkinsonism by his neurologist, his

neurologist said he didn't have a true Parkinsons, which we found out later in

2003 to be true when

> he was dx with PDD/LBD, but was hallucinating, delusional and confused in

2000, the neurologist had not heard of LBD until 2003. Jim had a long string of

things and issues since 1993 leading up to LBD. I believe it all started when he

went in for back surgery in 1992 and the anesthesia triggered it and it

progressed from that time. That is my opinion. Jim had REM from the day we were

married, I had no idea that it could be a clue to neurological problems, I

thought he was having nightmares, so the anesthesia may have triggered what was

already there.

> I do believe that because Jim was physically active with no other

complications other than LBD symptoms that it helped him survive more years. It

is just an opinion, I do not know for a fact if that helps, but it makes sense

that it would.

>

>

>

>

>

> > >

> > > > , choking does happen to many people at the later stages of the

disease unfortunately. Does it happen only when being fed? Many times, choking

can happen at the very late stages as the muscles in the tongue and throat are

not working properly due to the Parkinsonism. Saliva can pool somewhat in the

throat while sleeping as the person doesn't swallow as often during sleep.

However, I believe you are speaking about it happening during a meal. My

suggestion is to feed as slowly as possible and wait till each small spoonful is

swallowed before putting more into the mouth. Have the spoon touch the tonque

and wait till the person closes their mouth to take it and swallow each time,

instead of just pushing the food in. I hope this helps, Norma

> > > >

> > > >

> > >

> > >

[Guest guest]

Hi jan

What a surprise about Jim wanting to live - after all he had been through.

Sometimes I wish all of us in this group could form a village where we could

together! Even with support from family and friends I feel alone and isolated !

The only comfort I seem to

Get is here! And for that I will be eternally grateful!

Judy R. Strauss LMSW PhD

Lead Faculty

University of Phoenix

Jersey City Campus

100 Town Square Place

|Jersey City, NJ 07310

Cell-

Email- Jrstr@...

> I can only feel the doctor's frustrations too. LBDers are so different in the

way they react to certain medications and their sensitivities to drugs, while

some medications work for some, they don't work for others. I think the bad

medications for LOs should be avoided altogether. My husband did really well on

the Exelon Patch to the end, but I never let the doctor take it beyond the first

dosage. I forget now, but I think it was something like 4.6 I kept it at " less

is best " and it worked fine for him at that dosage. He did react once when a

nurse ran out of Jim's Exelon and took someone's patch that was 9. something. I

was not happy about that. It was too much for Jim and I saw it right away. He

did very well on the lower dosage.

> I have heard where others could take Klonopin, my husband could not tolerate

that. My husband could take Vicodin, it helped with his RLS the most, and others

react to Vicodin.

> The one Miracle Drug for Jim that is on the Bad medication list was Mirapex,

he got a second life on that, it lasted for about 3 years before it lost its

effect.

> Jim was letting me know toward the end what he wanted and even though he had

it in his health directive not to have any life supports, he knew it was toward

the end and he wanted to live, so I helped him where I could, but at the end it

was impossible for me to do anything.

> I think the less medications taken the better if one can get away with it.

> Jan

>

>

>

>

>

> >

> > > , choking does happen to many people at the later stages of the

> > disease unfortunately. Does it happen only when being fed? Many times,

> > choking can happen at the very late stages as the muscles in the tongue and

> > throat are not working properly due to the Parkinsonism. Saliva can pool

> > somewhat in the throat while sleeping as the person doesn't swallow as often

> > during sleep. However, I believe you are speaking about it happening during

> > a meal. My suggestion is to feed as slowly as possible and wait till each

> > small spoonful is swallowed before putting more into the mouth. Have the

> > spoon touch the tonque and wait till the person closes their mouth to take

> > it and swallow each time, instead of just pushing the food in. I hope this

> > helps, Norma

> > >

> > >

> >

> >

[Guest guest]

 

> >

> > > , choking does happen to many people at the later stages of the

> > disease unfortunately. Does it happen only when being fed? Many times,

> > choking can happen at the very late stages as the muscles in the tongue and

> > throat are not working properly due to the Parkinsonism. Saliva can pool

> > somewhat in the throat while sleeping as the person doesn't swallow as often

> > during sleep. However, I believe you are speaking about it happening during

> > a meal. My suggestion is to feed as slowly as possible and wait till each

> > small spoonful is swallowed before putting more into the mouth. Have the

> > spoon touch the tonque and wait till the person closes their mouth to take

> > it and swallow each time, instead of just pushing the food in. I hope this

> > helps, Norma

> > >

> > >

> >

> >

[Guest guest]

> > >

> > > > , choking does happen to many people at the later stages of the

disease unfortunately. Does it happen only when being fed? Many times, choking

can happen at the very late stages as the muscles in the tongue and throat are

not working properly due to the Parkinsonism. Saliva can pool somewhat in the

throat while sleeping as the person doesn't swallow as often during sleep.

However, I believe you are speaking about it happening during a meal. My

suggestion is to feed as slowly as possible and wait till each small spoonful is

swallowed before putting more into the mouth. Have the spoon touch the tonque

and wait till the person closes their mouth to take it and swallow each time,

instead of just pushing the food in. I hope this helps, Norma

> > > >

> > > >

> > >

> > >

[Guest guest]

Hi jan and group

Jan, your post below touches on many different great points of wisdom, but I

would like to highlight the following:

Every person in the late stages of a terminal disease in some way is taking an

accounting of their life- the proud parts and also the regrets

It seems to me that your constant companionship with Jim was the reason he

wanted to go on! It accentuated the peace that came with knowing you were with

him and not alone - it probably also reminded him of all the fond memories you

shares together as a couple!

Also, I have read both in the scholarly literature and other writing that the

dying person needs the peace of mind to know that their loved ones are going to

be ok when they r gone - it is also Of great comfort for dying parents to be

reassured that their children and families are in harmony and peace together!

There are countless stories of dying folks who have reunited with an estranged

loves one close to their passing - or asked that fighting children male up in

their presence so that they can rest in peace!

Although imam not convinced regardless of mom having home hospice that she is

close to passing I have now finally been reassuring her that we r all ok and

thar we can make it without her - that she has given us a firm foundation built

on great love and good values and morals on which we

Can continue to build and grow -

Jan, Thanks for the reminder that hanging onto a loves one too much at the end

of life is more selfish than anything else -

Best,

Jude

Judy R. Strauss LMSW PhD

Lead Faculty

University of Phoenix

Jersey City Campus

100 Town Square Place

|Jersey City, NJ 07310

Cell-

Email- Jrstr@...

>

>

>

> > >

> > > > , choking does happen to many people at the later stages of the

> > > disease unfortunately. Does it happen only when being fed? Many times,

> > > choking can happen at the very late stages as the muscles in the tongue

and

> > > throat are not working properly due to the Parkinsonism. Saliva can pool

> > > somewhat in the throat while sleeping as the person doesn't swallow as

often

> > > during sleep. However, I believe you are speaking about it happening

during

> > > a meal. My suggestion is to feed as slowly as possible and wait till each

> > > small spoonful is swallowed before putting more into the mouth. Have the

> > > spoon touch the tonque and wait till the person closes their mouth to take

> > > it and swallow each time, instead of just pushing the food in. I hope this

> > > helps, Norma

> > > >

> > > >

> > >

> > >